Thursday, July 23, 2009

POTS (Postural Orthostatic Tachycardia Syndrome)

Postural orthostatic tachycardia syndrome (POTS) is a condition of dysautonomia, and more specifically, orthostatic intolerance, in which a change from the supine position to an upright position causes an abnormally large increase in heart rate, called tachycardia. This is often, but not always, accompanied by a fall in blood pressure. Several studies show a decrease in cerebral blood flow with systolic and diastolic cerebral blood flow (CBF) velocity decreased 44 and 60%, respectively. Patients with POTS have problems maintaining homeostasis when changing position, i.e. moving from one chair to another or reaching above their heads. Many patients also experience symptoms when stationary or even while lying down. Symptoms present in various degrees of severity depending on the patient. POTS is a serious, though non-life threatening, medical condition that can be severely disabling and debilitating. Some patients are unable to attend school or work, and especially severe cases can completely incapacitate the patient.



(Great video on POTS symptoms and what is is like to live with POTS)

Dealing with one chronic illness is bad enough, but dealing with two can be unbearable at times. I have been dealing with EDS all my life, each year adding on new symptoms and more pain. Along with the symptoms of EDS, I have been dealing with my 'heart problems'...that was the term I used to describe the symptoms of my undiagnosed POTS. They included severe palpitations, dizziness, chronic fatigue, nausea, tightness in my chest, and passing out.

The symptoms started in my early teens, but weren't what I considered severe - some palpitations, some migraines, some fatigue. In my early twenties, the symptoms started to get worse. I had such severe migraines that I was in a migraine study at UCLA, in which they labeled the cause of my migraines 'undetermined' and said they couldn't help me anymore. I had bouts of passing out quite often, sometimes these accompanied the migraines and sometimes they didn't. I passed out at random times in random places: at home, at work (one time, when I was working for an airline and was checking in customers at the gate, I collapsed and caused a bit of commotion from the passengers and my coworkers!), even driving in the car (yes, scary!). The doctors I was seeing at the time had no clue what was wrong with me and some said it was all just in my head. My occasional heart palpitations became more frequent. I was exhausted more and more of the time. The symptoms were getting pretty bad by 2005.

When I went to Johns Hopkins in June of 2005 and was diagnosed with EDS, I mentioned these symptoms, and the doctors said I probably had POTS (I didn't know what that was at the time), but that it didn't seem bad enough to cause concern, and I didn't need to do anything for treatment other than drink lots of water and eat lots of salt. They said they weren't going to do any formal tests at that point in time. For the next two years, I just took their advice, figured I probably had POTS, but there wasn't anything I could do, and that was that.

From 2005-2008, my symptoms got pretty bad. I was having a hard time mustering up energy to do anything on daily basis. I was dizzy and lightheaded 100% of the time. I was nauseous always. My heart raced all the time, and when I would have a really bad 'episode' (what I called my 'racing heart'), I would be worn out all day. Some days, I didn't even know how I was going to work, let alone get up and move around the house. I knew something was really wrong, so I started to investigate that acronym the geneticist had used: POTS. Postural Orthostatic Tachycardia Syndrome.

Finally, in 2008, my symptoms got so bad, I knew I needed to seek treatment and get a formal diagnosis. And, I was hoping that I also would find some help. I contacted my general doctor who sent me to a cardiologist. They had me wear a halter monitor to watch my heart rate for 30 days. It had electrodes that attached on my chest and a monitoring device I attached to my waist on my pants. I had to press a button on the device anytime I felt my heart palpitating, and this would record an EKG. Then, I had to call the monitoring center once a day and transmit my EKG over the phone (a very strange thing!). A few times, the people from the center called to make sure I was okay, as they said my monitor recorded my heart beating at dangerously high levels! When the test was over, it was concluded that I had no arrhythmia's but I did have severe palpitations (so my heart raced really fast a lot of the time, but the beats weren't abnormal). After this, they sent me for a tilt table test. My test was positive for dysautonomia and they said I had POTS. During the test, my heart rate went up to 170! My blood pressure fell to 50/30. I did pass out.

What is POTS? What is it like to live with POTS? Does it go away? Is it curable? What are the symptoms?

POTS seems to be different for different people. For some, POTS is something one gets as a teen and outgrows it by their early twenties. For others, and I am finding this to be the case for those who have EDS and POTS together, it gets really bad around the mid-twenties and just continues to get worse with age. My symptoms are pretty severe now, at almost 28, and they make my life rather difficult on a daily basis. When I move, whether lying to sitting or sitting to standing, bending over to reaching above my head - and sometimes movements so slight as turning my head or moving my arms - my blood pressure drops, my heart rate goes way up and I become dizzy, things get black, and sometimes I pass out (which is inevitable if I don't immediately sit back down). I can't stand for long periods of time, like at a concert or in line at the grocery store, and more and more I am having a hard time standing at all. I am always tired, fatigued, have no energy, and this is caused by my heart doing overtime all of the time. I have likened it to 'running a marathon 24 hours a day, while not actually doing any physical activity.'

There is no cure for POTS. There are some forms of treatment, but nothing that takes away all of the symptoms. I tried the 'lots of water and salt' plan, which did nothing for me (though I continue to consume lots of water and salt just in case). I tried medicines. There are beta-blockers, steroids that make your body retain salts, medicines that keep your heart rate up, medicines that keep your blood pressure up. I went through the rounds. If 10/10 is feeling perfect, the closest I got on medicines was a 4/10. My endocrinologist exhausted all resources she and her team of doctors felt they could, and so I was stuck with a 4 out of 10. That was improvement, so I took it, but when I lost my insurance, I had to stop those medicines (couldn't afford at $1300!). Some people find relief on the meds, some don't. Some find just a little. That was me - just a little bit of help. Now, with no meds and no other choices, I currently am dealing with the full range of symptoms. I do a lot of resting, have a hard time being fully mobile, and am in a wheelchair if I need to go out and do things that require a lot of walking or standing, or on days I have no energy. Mostly, I just don't do a whole lot.

POTS, in itself, can be disabling. EDS can be disabling as well. Put them together and you have me - a young, healthy-looking woman on the outside, who is really ill, battling 2 syndromes that leave me in a lot of pain and thoroughly exhausted. It is very hard to convey this to friends and family. How do you explain your fatigue and pains, how do get across your 'invisible disease' without seeming lazy and like you are just complaining? Most doctors don't even know about the two rare disorders Ehlers-Danlos Syndrome and POTS. I was diagnosed with both, by medical doctors, and yet I still don't get the respect/sympathy I would if I told someone I had Parkinson's, breast cancer, or any other random number of well-known diseases. Not that I discount or discredit anyone's medical condition whatsoever; more so, I find it very hard, very frustrating that all diseases aren't given equal weight. Most people still don't understand. They don't believe me when I tell them I am sick. That is why I have chosen to dedicate time to increasing awareness of EDS, POTS, and bipolar disorder (another post). As the saying goes, 'invisible diseases suck!' - and, yes, they do. So, lets do something about it.

And, to keep a bit of humor here, as Elliot said on the TV show Scrubs, 'If you want sympathy, get a disease people can see!' (Just kidding!)



(Video: Trailer for Changes: Living with POTS documentary)

Symptoms of POTS outlined by Dysautonomia Information Network

  • Fatigue (which can be disabling)
  • Sleep disorders (can cause unrefreshing sleep and an increased need for sleep)
  • Headache/migraine
  • Myofascial pain (characterized by regional muscle pain accompanied by trigger points)
  • Neuropathic pain
  • Dizziness
  • Tachycardia
  • Exercise intolerance
  • Clamminess
  • Anxiety
  • Flushing
  • Postprandial hypotension
  • Blood pooling in limbs (can make legs feel heavy and appear mottled and purple in color)
  • Intolerance to heat
  • Feeling cold all over
  • Low blood pressure upon standing
  • Cognitive impairment (may include difficulties with concentration, brain fog, memory and/or word recall)
  • Narrowing of upright pulse pressure
  • Cold hands
  • Hypovolemia (low blood volume)
  • Chills
  • High blood pressure
  • Hyperventilation
  • Numbness or tingling sensations
  • Reduced pulse pressure upon standing
  • Low back pain
  • Aching neck and shoulders
  • Noise sensitivity
  • Light Sensitivity
  • Disequalibrium
  • Arrhythmias (irregular heart beats)
  • Chemical sensitivities (May have multiple chemical sensitivity and can be very sensitive to medications - may only need small doses)
  • Easily over-stimulated
  • Feeling full quickly
  • Feeling "wired"
  • Food allergies/sensitivities (some foods seem to make symptoms worse)
  • Hyperreflexia
  • Irregular menstrual cycles
  • Loss of appetite
  • Loss of sex drive
  • Muscle aches and/or joint pains
  • Swollen nodules/lymph nodes
  • Polydipsia (excessive thirst)
  • Weight loss or gain
  • Feeling detached from surroundings
  • Restless leg syndrome




(Video: A Demonstration of Dysautonomia POTS)



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68 comments:

lisas mom said...

your not alone my 16 year old battles the same POTS and Ehlers Type III 9/9 on beighton scale and spends most time in bed. See carepage-girlinchair or facebook-Lisa Simmons
We belong to EDNF, and DYNA kids support groups
Linda in Fla

BubbleGirl said...

I'm pretty sure I have POTS too, but I haven't been diagnosed with it. I used to lose consciousness upon standing all the time, until I got good at feeling when it was going to happen, then I'd sit down immediately, no matter what I was in the middle of doing. I have a lot of salt in my diet, and drink lots of fluids. I find I'm more affected when I'm stressed and not eating regularly.
My GP refuses to send me for more tests, he figures one incurable disease is enough, so he won't send me to find out I have another one. I've even brought in stuff for him to read, along with the prevalence of POTS in EDSers... But no luck... I guess time will tell.

Vegan Danielle Davis said...

@lisas mom:
hi, great to meet you! i checked out lisa's profile on facebook and added her. i am so sorry to hear she deals with both EDS and POTS. it seems one or the other would be enough, but both limits life a whole lot. have you found things that help her? meds? holistic tricks? i am not certain that anything really helps me with the dizziness, fatigue, etc. my diet has certainly helped my GI tract, but the rest of it hasn't changed at all - just gotten worse over the years - especially the last 2 years. i send my love to you both. i know how hard it can be. all we can do is take it one day at a time. she is very lucky to have a mom that reaches out and helps - that is wonderful! keep it up - you probably will never begin to understand how much it means to lisa! (my mom's name is linda as well!)

@BubbleGirl:
i understand that! my old doc used to tell me that she wasn't allowing me any more tests. at first i thought it was kind of funny...then, it got irritating. i have had to be super pushy when it comes to my health care. it seems time is definitely what did it for me - symptoms crept up on me over the years, then manifested themselves into a full-blown case of feeling horrible all the time. that is when i fought for the diagnosis. it took me a while to track down the right people. some people with EDS, it seems, show a few POTS symptoms but it never gets too bad. my mom, for example, has some hypotension and very mild tachycardia, occasionally. but, it certainly doesn't limit her life - except every once in a while as of late, she is getting chest pains while laying in bed...?...me, on the other hand, it affects my every move all day long. i hope your symptoms just stay where they are! they seem manageable from what you write. it is bad enough dealing with the EDS. lol! if you do find they get worse, shoot me a line if you have any questions that need a more detailed response! (and, i just went straight to a cardiologist for the testing - if your insurance allows for this, that is what i recommend. if you need a referral, just insist! but, hope it doesn't get that bad!!)


xoxo

TNmomb said...

I am the wife of a 40 year old man who has been diagnosed with POTS . He had it as a teen-ager but they really didn't know what it was. He got a flu a few years back and it came back with a vengance. nothing is working. When I read your blog it was helpful in a sad way because he is not having much luck with any of the meds,salt water etc. We have gone the holistic path as well. When we combine the best of the best he sometimes has a few good days. A lot of work for it though and he is frustrated and getting very depressed. I can't blame him. We have a 5 year old and a full life which he has been MIA from . He tries so hard bt just can't beat it. I too am sad and tired but for the sake of my family I am getting filled up so I have enough in my tank to keep going.I am wondering if anyone has heard of any support groups in LA?? I think our doctor is good and is trying everything to help him. I think he needs more support than just me.

Vegan Danielle Davis said...

@TNmomb:
Nice to meet you and your husband. I am so sorry to hear about your situation and his health issues. POTS is not easy - for the person with it or anyone close to them. It seems to pull every last thread one has available - until there doesn't seem to be any hope. As you said, it probably will take more than just your support to get him through this (not that there is necessarily an end in sight), but don't let that undermine what you have done for him (and will continue to do). Support from the ones we love is SO important (even though it might seem hopeless at times). I can't even begin to describe where I would be without it. (Or where I wouldn't be.) So, do continue to be strong. It will benefit him (and, in turn, I hope that benefits you and your son as well.) For POTS that isn't accompanied by EDS, I am reading a lot that people will eventually 'grow out of it,' so that is hopeful. It may be a long road, but perhaps that can be something to look forward to as the months and years pass - that there very well may be resolution. As far as outside support, I would urge him to utilize what is out there. Sometimes all the difference in the world is made by just communicating with someone who has the same illness. There are blogs (and, you should tell him to communicate with me - I am open to any questions or just for him to vent), there are websites that have helpful info (DINET is great, and DynaKids while aimed at youth, might help your son understand (in time) what his Daddy deals with:http://www.dinet.org/index.htm -and- http://www.dynakids.org/ ....there might be support groups out there. Perhaps someone will comment on this post with one in LA. For me, the closest I have gotten to a support group is just from the internet, but it really has been a huge help. Even just reading and emailing with people has helped. If he is able to lie on the couch and type, he might be able to bond with people with POTS. There is a blog that does group chats for POTsy people, but I don't know if they have kept up with it - he or you could email the organizer?? http://potsawareness.blogspot.com/ - also there are some more non-pharmaceutical tricks on this blog: http://wheredidigetthislemon.blogspot.com/2009/06/anti-dysautonomia-non-pharmaceutical.html .... I haven't found a lot to work for the POTS, but I do continue to drink tons of fluids, especially in the heat, stay inside where it is cool (the heat really does affect me) and I always wear my compression stockings (rated 30/40, the strongest out there). If I come up with anything else, I will post it on the blog. Feel free to subscribe and keep in touch - and tell him to pop in and say hello if he is feeling up to it. My love goes out to you and your family. xo dani

Vegan Danielle Davis said...

@TNmomb:
oh - and the guy that runs the POTS blog chat group - his name is Dave (so says the website) and I tracked down his email: dys_x at live dot com - (no spaces, keep the underscore) hope that helps!

alice said...

hi danielle

ive just been diagnosed with pots, after two long years of struggling to understand what was wrong with me. im sure the condition has gone on longer than this, i remember at the age of 13 blacking out, and being unwell with similiar symptoms for three months. its just a relief to finally now what is wrong with me, and now to see what i can do to put it right. im on quite a few tablets, which do make me feel better, unfortunately at the moment i cant sit up for very long. im hoping that will change soon. look forward to reading your blog.xx

Capron said...

This is my second go round with symptoms. My first experience, four years ago, changed my life. Then I ran a riding stable and was living my dream. My husband and I had just built our log home on the farm. My world came crashing down with symptoms that defied diagnosis. Panic attacks debilitating fatigue, crashing blood pressure. I fired my PCP when she refused to call for more tests. Eventually I received the dx of CFS. My cardiologist suggested salt and water which helped, but my dogged determination and my husband's unwavering devotion got me back on my feet. We were forced to sell the farm and move. At that time no one mentioned POTS- not even the cardiologist. I made slow progress over the next couple years and eventually returned to work and began building a private psychotherapy practice. I left my stockings and salt behind thinking it was all in the past. Unfortunately it was not. Now I am once again struggling with POTS symptoms and am awaiting my chance to meet with a new cardiologist. But at least I have new hope in that I have a possible diagnosis. Every day is a struggle because I am a very hard working creative person. My house feels like a prison at times and I admit to moments of despair but I rely on my faith and my wonderful husband to keep hope alive. Thank you all for sharing your blogs. It helps to know I am not alone.

Anonymous said...

I was working in Magna factory in Concord, I was picking a part by bending my body, I felt dizzy. I thought it I was tired. I came to wash romm but have trouble in urinating it was burning. I came home, I felt palpitations, while in bed.

Doctor gave me Ammoxicillin for Bladder infection. I went to hospital for palpitation. They said it was PVE but harmless.

One day I was driving a car. I got down from the car. I was felling dizzy, blurred vision and panicking. These happened several times.
I went to hospital emergency six tomes. but every time they release me within two hours, treating nothing.

I matched my symptoms with the internet, I discovered, It was POTS. Boold pressure falls bellow and heart rate increases. I feel very awkward.
I am drinking lots of water and keeping measuring blood pressure, heart rate. It improved a little.
Now heart rate not increasing that much and pressure better controlled. Avoiding trigger situation.

Still i feel anxiety and panic.
I am 61 years old.

Cardiologist gave me loop monitor for two weeks for recording cardiac ivents. I gave back for 30 events. He did Ultrasono Ecg and Exercise test.

I am a diabetic patient, take diamicron, metformin, Avapro(Blood pressure medication) and lipitor.

Can anybody suggest, was there any connection between Urinary tract infection, paplitation and POTS?

Any non medical suggestions to improve the situation?

But no report yet from the cardiologist. It is about four weeks. Situation worsend, Probably I cannot exercise test now.

doctormom said...

Funny how all these seemingly crazy stories make sense. I haven't been diagnosed by a geneticist yet, but I have an appt. in Baltimore Oct. with Dr. Francomano. I was a Family Physician for 12 yrs and feel extremely blessed that my most severe symtoms didn't start until I was 41. Since that time, I have hit the ER or been admitted over 300 times. I developed rather severe hypertension requireing 6 blood pressure meds at once. I also developed arrhythmias and needed those zapped out of my heart. I needed a pacemaker in 2004 after I developed a heart rate of 12- not something which is compatible with life or staying awake!!! Then in 2001, I developed extremely low blood pressures, esp. after eating or in warm environments. There are indeed some advantages to living in MN.I was fired from my last physician job after working at a new clinic for 4 months on 09/11/01 because I had been admitted 6 times in the 4 months I was there - what an interesting day! I wasn't covered by disability insurance, but Social Security didn't even argue or ask me for an exam, so at least I've been covered by Medicare for the past 8 yrs.I and was taken off all my BP meds except my beta blocker to control the fast heart rates. I also am blessed to have 2 parents who had a heart bypass in their early 50's and have had early coronary disease for the past 10 years, so when I would develop chest pain from low or high blood pressure, they were obligated to admit me. I was finally diagnosed with POTS in 2006. I have been lucky in that the flurinef which helps with salt and water retention to keep BPs stable has been a God-send for me.
When I was diagnosed with POTS, I noted that one of the causes is EDS, which I blew off as a diagnostic possiblilty. You don't get much specific training in these things in med school. Then I thought, "Wait one hairy little minute. Is it more common for one person to have 25 common disorders, or more likely to have a rare genetic condition?" I also have had spondylolisthesis and scoliosis with 2 back fusions, 3 incisional hernias, seizures,bilateral cataracts, sleep apnea, reactive hypoglycemia after a gastric bypass ( not a good idea in someone with EDS), pelvic prolapse, a rather ugly fracture/dislocation of my ankle, alongw with the hyperflexibility. I saw a rheumatologist last yr. and she said Yeah, you're hypperflexilbe, but as for all this other stuff, I have no idea.
I have since finished a Master's in Counseling and Psychology and am able now to work 12 hours per wk. I will be starting a Health Psychology Group in a couple of weeks, to help others like us whose physical and mental health are all wrapped up together.I have found that it is most important for me to acknowlege the losses and grief that go with a chronic disabling condition. I can kick and scream, but radical acceptance of what is, since I can't change it, helps me get through the tough days. I also have personally found that I had to go from a position of being supermom (single parenting 3 teenagers is my full-time job) to feeling completely disabled to coming to an understanding of my self as competent with limtations. Most of us are not going to take up skydiving any time soon, but that doesn't mean we can't live fulfilling, productive lives.My 17 y/o has developed disabling chronic pain, uncorrectable vision and has those goofy "sharks teeth", or extreme dental crowding you can see with EDS. How she can be hyperflexible and stiff as a board all at once is beyond me. She has been shamed by all sorts of pain specialists, who think she is drug-seeking or just plain nuts. She is going to try to finish high school on-line this year, since the schools have been less than supportive (truancy court is a lot of fun.)If getting to a correct diagnosis with all the training I've had is this tough,it has to be extremely daunting for the average patient.

Anonymous said...

Doctormom can you please comment:

My POTS will recover spontanously, I am hoping so, because it started with bladder infection/bacterial infection.
But still I am in doubt because I am a diabetic patient. I had electrolytic problem in 1999.

Matin
amatin3@gmail.com

doctormom said...

I want to start by saying that I can't provide you with specific medical advice, since I don't currently have an active license. That being said, some details of your story caught my attention. For one thing, Avapro in someone with POTS may definitely make it worse, since Avapro and other drugs like it will drop your standing blood pressure. So, I would be hard pressed to make a diagnosis of POTS in someone on those meds. Secondly, as you point out, diabetes in and of itself can damage nerves which control blood pressure, heart rate and other "autonomic" functions, i.e. those things most people's brains tell their bodies to do, but ours don't, like how to control heart rate and blood pressure. This also makes it hard to diagnose true POTS from that of diabetic complications. Have you had an echocardiogram? This is also info I would want, because diabetics are prone to heart disease which doesn't show itself in conventional ways, and that can also cause blood pressure problems. I would want to discuss these issues with your primary care doc or cardiologist and see what they have to say. Best of luck and keep your chin up
Patti

Anonymous said...

Reply to Doctormom
Specialist did three tests: 1. Exercise test 2. ECG 3.EKG by ultrasonogram, pictures of heart valves how blood flowing. 4. Loop monitor (recorded 30 cardiac events).ECG has been done 10 times in emergencies.These tests are completed 12 days back. Technicians said, if specialist likes, he will inform me within 4 days. But he did not inform. Family physician did not informe me anything. Any report was sent her or not I do not know.
I am alone now in Toronto with two children. I am not courageous enough to drive or go to family physician alone because of fair of triggering situation.
Because i felt panicking after getting down from car six times, though driving is not a problem for me. Wednesday one will come, I will go to her then.

After urinary tract infection on 11th June 2009, I stopped Avapro, because I saw in the internet not take Avapro while urination. But that time I did not feel POTS. I took 150 mg of Avapro 4 time, while I panicked and pressure went high. I do not take it now.

Fantastic is that neither family physician or specialist is informing me anything.

Let me tell again the steps:
a. 11th june feel dizzy(little)
b. 13th June Trouble in urinating
c 15th June Palpitation (started panicking)
c. July 2, panicking , getting down and standing from car.


ABDUL MATIN
416 742 4092
DR. ZUZANA GROSS family Physician)
416 256 9642
DR. MYERS (Cardiologist) KMH Laboratories.
416 444 1075
(905) 855-1860

2075 Hadwen Mississauga, L5K 2L3

Anonymous said...

Doctor MOM again

I alwayes afraid now, giving intense unhappiness. By controlling my body movement still I can fairly live at least in home. But very restless, what is going to happen, If there is any serious problem in Echo cardiogram they used tell me in the meantime.

I had the hope that it is only bacteria, I could convince myself, that it will go soon. IF it is diabetic, the probably cannot be repaired. Now I am feeling little burning in the right leg joint, if I stand longertime. Some burning in hands in night time. Sleeping is a problem now.

I need some convincing sentences so that atleast I can run my life by controlling myself.

Is there any way to improve?

I have about three years undiagnosed diabetes, 1996-1999, IN 1999 I had syncope for electrolytic problem.
Little blood came out in non celebral region, but Dr Gentilli of Toronto general hospital ruled out heart reason. All sorts of checks, ECG Echo, exercise, holter monitor were done that time. But no problem was found. Dr. Gentilli termed it Trauma but i did find any incidence of Trauma in my life.

IN 1996, I hade pressure high due to diabetes at night, but family physician did not give any medicine.
From 1999, I feel an area sensless in right thigh.
After that, diabetes medicine was prescribed.
In 2008, again I had a syncope due
to not sleeping 24 ohours. I worked at night. In morning when I came home, see daughter slipped in ice and broke ankle, I had to spend hole day in hospital and trying to sleeping by sitting, brain felt pressure , the again came work in night, Whole night i was pressure within brain, morning when I was coming home, I became sensless.
Again all sorts of heart testswere done, MRI done but no trouble found.Old Trauma was mention again, some glists dried, some mucous in sinus area

I dont feel PVC that mouch .

How can I convince myself I can survive in this situation.
I feel more emotional problem than the low pressure problem.

I I walk within home I am OK, After ending walking half an hour, stand five minute pressure goes to 88/58/92. I just go to bed.

Anonymous said...

Doctor mom again

If I have autonomic failure, can you please suggest changes of life style to be safe.

Can I do exercise? How much? Can I drive?
What are the precautions to be taken?
Heart rate is increasing gradually I believe.

Did autonomic failure made urinary tract infection? Or UTI harmed the nervous system?

Is there anyway to improve sleep problem?
Is there any way to recover it fully or partially? or moderately

amatin3@gmail.com

Anonymous said...

Awareness Needed -

I know what you all are going through.

We live in Fl. and our son has had POTS since 2002. He also has hyper mobility synd. He just finished radiation treatments to stop the growth of vascular malformations taking over his dominate right arm.

The worst thing is that he tries to fit going to college for 2 classes a semester into his POTS life. The university is horrible about even trying to understand and accommodate him. He has to write tons of papers even though his right arm is very bad and they won't even give him a parking spot. We must unload his wheel chair in the middle of the road with cars flying at us.

POTS patients need the big media people to listen, do some stories, and help educate teachers, doctors, etc.

POTS is bad but could be better if ABC, NBC, CBS etc could help raise awareness. Some of their stories are lame compared to helping raise awareness of a rare, incurable illness. Awareness could bring more research money and a hope for a more normal life that ALL POTS patients are hoping to regain.

Our son's wish - his life as it was before POTS!

nikki80thomson said...

I have just been diagnosed. I am 29 years of age and this has been happening since I was 15. 14 years later and I have now have answers. I found your videos great especially showing my partner it has helped him understand.
Thank you
Nicola England UK

Anonymous said...

im now 20 and i have had pots for 4 years i was only diagnosed with pots about a year ago i had to give up work and all my normal activities as i couldnt stand up for long and got tired very easily. i have tried most medications availiable to me and none of them have helped they all seem to make the symptoms worse not better i now have my dad looking after me and have to watch what i can do but i have become used to not being able to do things but it is hard when there is something that you want to do but cant....


zoe walker, leicester, uk

Nevada Girl said...

Hi, I was diagnosed with Marfan Syndrome about 25 years ago (another connective tissue disorder similar to EDS), mainly because of my height - I was 6'0" at 14 and I'm female. I've had my heart watched regularly for years, and tachycardia was diagnosed also as a kid, and beta blockers didn't help, only made it worse. In 2006, I revisited the geneticist who diagnosed me and she revised her diagnosis to EDS, hypermobility type. That same year, I saw a new cardiologist who looked over my years of symptoms such as fatigue, joint aches, trouble sleeping, tachycardia, dizziness, etc., and decided to do a tilt table test. I passed out after 9 minutes and went into cardiac arrest after 11 minutes. My BP starts out HIGH when I stand to try to counteract the venous pooling, then drops dangerously low. The attending physician said that if my BP had dropped any further, I would have had a stroke.

After receiving the diagnosis of POTS, I no longer feel like it's "all in my head." I know others are out there with EDS and POTS. My primary care doctor once commented that specialists sometimes don't know what to do with me, and when the tests they choose came back negative, it only confirmed their thoughts of "she looks healthy and normal." Finally, a name for the disease I always had but never had a name for.

In addition to this, I also have salt wasting kidneys, that was only diagnosed last month, but I was born with it. My endocrinologist is fantastic and put me on prescription grade potassium to keep my salts in me, increase blood volume, and help with muscle pain. Voila! No more muscle pain all the time, only when I over-exert myself. As you have experienced with EDS, you always have some time of pain, joint inflammation or subluxation, and this one little change has been a God-send. Hasn't helped my normally low BP (at rest) nor high BP (upon standing), but my muscles feel good.

I wish you the best of luck, and thank you for posting about your struggles. I am only 36 years old, and sometimes I think, "It can't be possible that I could feel this tired at my age."

Keep up the fight.

Dino68 said...

I first developed POTS when I was 22 after being exposed to chemicals from a new car. Looking back, I can see that I had mild symptoms of dysautonomia most of my life. After the chemicals I had gastroparesis and almost all of the other symptoms of POTS. On a tilt table test my heart rate went up from about 90 to 197 within a minute. I could turn my head and my heart rate would increase by 50 bpm. I took some Chinese herbs which helped my stomach problems enough where I could maintain my weight (my weight had dropped to less than 90 pounds) and I had been on a feeding tube. I eventually took clonidine which brought my heart rate down and reduced the adrenaline levels some but I still cannot drive, am dizzy all of the time and most days am barely functioning. It has been almost 20 years since I was exposed to the chemicals and I am still trying new treatments as they come along. The only treatment that has made me feel significantly better was a steroid shot for allergies about a year into my illness. A few months later I took the same medicine and had a bad reaction to it. I also believe I have a mild form of a connective tissue disease as many doctors have thought I had Marfan's syndrome just by looking at me and I have numerous bony abnormalities. Fortunately, most people with dysautonomia respond better with time and treatment than I have and can often get back to a nearly normal life.

Good luck to everyone!

Jenni said...

Hi there. I was diagnosed with postural orthostatic tachycardia syndrome (POTS) at the near-completion of graduate school (I only had a few weeks to go), at a physician assistant program in Fort Myers, Florida, when I was dismissed from the program based on what I now know to have been symptoms of POTS. Unfortunately I had not been well-schooled on the full and at times completely debilitating symptoms experienced with POTS, and therefore thought what I was experiencing was something I could "fix" or "un-due." After many sleepless nights, and even more days spent tirelessly searching for answers following my dismissal from the program, I have begun to gain some insight into this condition, but am left wondering where else I should be looking for current and up-to-date information on dysautonomia and POTS. If anyone has any suggestions for good resources as I continue on my quest to learn more about this condition which has wreaked so much havoc on my life I sure would appreciate hearing from you! Thanks so much!

Vegan Danielle Davis said...

@Capron - I am so sorry to hear about your POTS symptoms returning and really affecting all you have worked to build in your life. I know exactly what you mean. I appreciate you sharing your story, as it really does help knowing there are others out there who share our pain, our hopes, and our disabilities. I do hope that you find a plateau, that things can at least be 'calm' for you, and that you are able to find some peace in who you are, everything included, and be happy in the everyday. I know it is hard. I find it a struggle most days. Don't give up though, we are all in this together and there is a way to be happy through the pain. :) Keep your chin up and keep a smile on. Much love and peace to you. Thank you for sharing. Hang in there!

Vegan Danielle Davis said...

@DoctorMom - thanks for sharing your story! You are quite the inspiration. I love that you have taken your conditions and are now using them to help others with theirs, and in turn I am sure that helps you deal with yours as well. I can't believe there was so much trouble getting to the bottom of your possible EDS and your diagnosed POTS, considering your former field. It seems like no matter what your background, who you know, etc., that no one pays attention to all of the conditions as one genetic disorder. They tend to want to treat you, like you stated, for 25 different things and never look at the whole picture. I am glad that you finally got your POTS diagnosis. Any word on the EDS one with Dr. F? I hear that she is a wonderful doctor. I also certainly know what it is like to lose jobs/careers over having to miss work for doctor/hospital visits. I had the same exact thing happen to me. I would love to hear your update, please keep me posted on your EDS dx. Also, sorry it has taken me so long to respond - life has been too much the last few months, but I am back to giving you all the attention you deserve, and to focusing on the blog again. Thank you for your patience. :)

Vegan Danielle Davis said...

@Nikki Thompson - I am so glad you found them helpful! Great that you got a diagnosis. It can be hard a lot of the time, just keep taking it one day at a time and have patience with everyone, including your partner...and they will have patience with you too. It is a learning experience for not only us, but our families and friends too! Bendy hugs! :) xo

Vegan Danielle Davis said...

@Nevada Girl - (From another Nevada GIRL! Reno area!) Thank you SO much for sharing your story! I was tested for Marfan's before EDS, so I am a bit familiar with it. I am sorry you deal with that and POTS too - though, at least getting a POTS diagnosis may have provided you the 'mental' relief it did for me. It finally gave a reason to why I always was so exhausted, why I had such bad chest pains, and why I couldn't stand up without feeling sick and awful. I am glad your endocrinologist has been such a help! I LOVED my Endo back in VA, but I haven't found one since I came back to my homestate of NV. Are you in Northern or Southern? I would love to hear how you are now that Spring is here. Please keep in touch and comment as you like. :) Gentle hugs!

Vegan Danielle Davis said...

@Dino68 - Thanks for your comment and stay strong! I hope you have found things you love to do, during your good moments, even if just from bed! Hopefully knowing there are others out there is at least a bit comforting! Gentle hugs from an EDSer, and always live your life with spirit, no matter how mobile or immobile you are! <3

Vegan Danielle Davis said...

@Jenni - I am sorry to hear about your POTS diagnosis and how it has affected your future/career. What I have learned from having POTS and EDS, is that I don't look at my future the same as I once did, but I still have a future. I now am learning how to change my goals to reflect things I am ABLE to do. I hope you are able to find peace with your illness and that you still find happiness within yourself and from those in your life. I wish you the best of luck in your journey! I will post things on POTS as I learn more, too. Thanks for commenting and I look forward to hearing more from you! <3

Nevada Girl said...

Hi Vegan Danielle Davis. I am a Reno native, and live in the Reno area, and work directly in Reno! Imagine that! I am going to who I am told is the best endo around, and he is FANTASTIC. People come here to see him from all over the U.S. and even other countries. His name is Robert Fredericks at Endocrine Associates. He doesn't require a referral from a primary, but they will ask for any information or test results you may have. It takes about 5+ months to get in for a new patient consultation, and he spent almost 3 hours with me on my first visit, but regular visits after that are easy peazy to get in. A warning: he takes all the time he needs with every patient, so it is not unusual to be waiting for your appointment up to 1-2 hours, but trust me, it is worth the wait. He treats every issue one at a time so that there is no confusion about what causes what, and what helps. He is especially knowledgable about POTS and the veinous pooling, and how it is different than other types of POTS, since as you know, EDS sufferers have it because of over-elastic tissue and veins. He also treats my teen daughter, who also has EDS and mild orthostatic intolerance. EDS is crummy enough without the double-whammy of POTS to add to the mix. Anyway, Dr. Fredericks is great, although a bit big brained (my regular doc says most endo's are).

I see Dr. Frank Carrea at Sierra Nevada Cardiology, and he is also great, and takes time to talk about your concerns and is realistic about the future. Nice to know I am not alone, and for sure, not alone in Reno. Let me know if you need any other info.

Vegan Danielle Davis said...

@ Nevada Girl - Wow! Super great to see there is another EDSer/POTsy here in Reno! I have one other friend here in Reno that has EDS, no POTS diagnosis, so there are at least three of us here! Thank you so very much for the info on your docs, that is a huge help. It really stinks when you move from somewhere and adored your docs before, and have to go through the blind process of finding new ones. I really appreciate it! I will certainly check out the endo and cardio. Who is your Primary? Do you have a pain doc? I see Dr. Jensen for Chiro (just did a post on him and his neat form of chiro) if you ever need one. I just LOVE him. I would love to keep in touch. Please feel free to drop me a line anytime - via comments or at my email (linked to on the home page). I hope you are having a great week! (And, I hope this weather evens out a bit - if your joints are anything like mine, they don't like this back and forth stuff!). xoxo

Nevada Girl said...

@Vegan Danielle Davis: My primary is Dr. Michelle Kiser, and she is wonderful. She is the one that sent me back to the geneticist to reevaluate for EDS, as opposed to Marfan's, and she was right. She has taken fantastic care of me for around 10 years now, and every concern is taken seriously. She's over at Renown Family Care at Ryland, near Renown on Mill Street. I go to Dr. Karl Forsberg at Performance Chiropractic (775-853-0250), and he is the best chiro I've seen in the area, and I've been going to chiro's since I was a kid. He also adjusts everything else besides the spine, such as hands, feet, shoulders, knees, ribs, etc., which is great for me because I subluxate everywhere. I'll send you my contact info via email, to keep in touch. Take care.

cportnoy said...
This comment has been removed by the author.
generic viagra said...

What causes POTS Disease (Postural Orthostatic Tachycardia Syndrome)?
My daughter was diagnosed with this. She is only 11. What are signs and symptons and what causes it.

Nevada Girl said...

To @generic viagra:

Wikipedia actually has a very good description of POTS, which can be caused by a variety of issues, such as infections, issues with hypothalamic controls (autonomic nervous system), and various other issues. In many people, it is resolved by resolving the cause of the POTS. Unfortunately, when one has POTS due to a connective tissue disorder, like myself, it is a life-long struggle. In my case, since my connective tissue is compromised, my tissues are quite elastic and don't heal well. This affects the vascular system in the body. So when I sit or lay down, the blood pools in the abdomen or legs ("veinous pooling"), and when I stand up, instead of the blood being pumped to the rest of the body as it normally should, it stays pooled because my vascular system is unable to constrict sufficiently enough to help the blood circulate. So, my heart rate increases significantly, and my blood pressure does rise initially in an attempt to get things moving, but this doesn't happen adequately enough so I start to black-out because the blood isn't making it to my brain. If I don't either 1) get moving to get the blood flowing, or 2) sit back down, my blood pressure takes a nose-dive and I will pass out and my heart will go into cardiac arrest.

This scenario is not the case for everyone, as the passing out is called neurocardiogenic syncope, and not all POTS sufferers have this part of it, especially since POTS is caused by so many different things. If you don't understand all of the POTS issues, it would be best to talk to your cardiologist. Sometimes taking medications or simply increasing the salt in one's diet will help to increase blood volume, raise blood pressure, and reduce the effects of POTS as a result. This isn't suggested for everyone, so you really should talk to your daughter's doctor for help with managing her symptoms.

Take care and good luck!

Done being SICK and TIRED said...

I am 40 years old and I have had POTS since I was a teenager. But not diagnosed until 40yo. I have recently uncovered that one of the causes of POTS may be caused by a an inheirited gene. The defect has been found in gene TNFSF5 @ q26. This can cause POTS and hyper IgM syndrome. I am not a physician. I have been unable to work since 2006. I have researched all of my medical history (1000,s of pages). Having the hyper IgM syndrome enables you to get reoccuring infections. Espeically upper respiratory, sinus, gi infections, and uti's. I have had to find all of this out on my own. My doctors have always missed it. I encourage all of you to do as much research as possible on your own as well as doctors. Get your medical records and go over them. And most important....Get a doctor who believes you and is helping you. I have had experiences with doctors that are great doctors but they aren't figuring out what is going on. Doesn't mean they are not a good doctor but they probably haven't exprienced this yet. Now with the research I did, my entire family on my mothers side will be helped because they had no idea there was a bad gene in our family. And this was very lucky bucause we don't know who my mother's biological father is. Having an answer means more sometimes than actually feeling better. With my experience, much has not helped but always trying the best to be emotionally happy has helped me. I think that an early diagnosis is very beneficial (physically, meatally, emotionally). I hope everyone the best of luck and never give up. I look at it as a very big challange. I love a challange. Bring it on!

Anonymous said...

Danielle,
I am so happy to find your blog!!! I have had the worst 2.5 years of my life. I am finally about to get a diagnosis after seeing over 25+ doctors and being told over and over I'm crazy, I have too many kids, Im crazy, etc.... Now I found a doctor that is about to diagnose me with POTS! I have also been diagnosed recently with Fibromyalgia from my rheumatolgist. I go for my tilt table test in 6 days. Thank you for sharing your story and helping others! I have started to believe others that maybe I am crazy, not knowing what else to think. Im glad to know I'm not alone, not glad others suffer, but glad I'm NOT crazy!! People need to know about this! I am excited to finally have a real diagnosis and hopefully stop being called crazy! Thanks again for sharing you experiences, sorry you also had to go through all the pains and suffering...

Molli

Kim said...

Glad I found this site! i too have EDS same type as you and am vegan or as close to vegan as possible.

Also after looking through the POTS symptoms, Im wondering if I should be checked for that also.

Kim again said...

I am in Reno too - is there an EDS support group here? If not, maybe we should start one!

momofboys06 said...

I posted back in Oct, and was confirmed POTS on the 12th of Oct. I do also have Fibromyalgia and Osteoarthritis, so yes I know pain all too well.. Love your blog. I am raising five young boys and living life the best I know how!

Anonymous said...

I live in the UK and I was diagnosed with POTS and ehlers danlos a couple of years ago too. The worst part for me is that it took so long to diagnose - my POTS symptoms came on after a bad case of gastric flu and then I went to see so many doctors (maybe 8 consultants in all?) and no one had any idea what was wrong! I had every test they could think of and when they all came back clear I was told it was an anxiety disorder and I ought to just chill out - it must be stress. I completely lost hope of ever getting better, particularly as I missed so much school I had to drop out completely. I was incredibly lucky in that I was eventually sent to a neurologist who had heard of POTS (most doctors, I find, haven't) who referred me to a colleague of his who is a specialist (Professor Matthias at UCLH in London - fantastic doctor). He diagnosed me with the tilt table test and also suspected that I might have Ehlers Danlos too, so sent me along to another specialist. I'm now on midodrine and symptom free thank goodness! Though I still struggle with some things, for instance I can't drink alcohol at all as it makes me very ill. Also, I'm constantly getting injured as a result of the Ehlers Danlos and I'm having surgery to correct a shoulder that keep dislocating. I hate having to constantly explain to people why I can't drink, why I missed a year of school etc. because no one's heard of POTS! I've never heard of anyone who has both of these diseases, which is why I was so pleased to find your blog. I'm so sorry that you're still struggling with your illness and that you haven't found any treatment that works for you. I really hope you get better, and thank you for your blog!

Nicole said...

I definitely feel your pain. In 2008 i started to have a lot of health problems. They seemed to be all of a sudden but when i look back i have had mild symptoms for a long time now. I actually went to medical school in 2008 and dropped out in the fall of 2010 because i just couldn't do it. In November of 2008 i was diagnosed with POTS. In November of 2009 i was diagnosed with fibromyalgia. In March of 2010 i was finally diagnosed with EDS hypermobility type. Since then, i have also been diagnosed with gastroparesis which doesn't allow me to tolerate any oral medications. Last week i was also diagnosed with an immune deficiency. I am having a hell of a time with life in general. It is hard for people to understand. They say they understand but they really don't unless they have it. My boyfriend has stuck by me but i can tell it is hard for him. I am so tired of my family thinking i am just being lazy or saying what else is new when i say i am just really not feeling well. I don't know how to deal with it. I am happy to know what has been wrong with me and finally prove anyone wrong who said it was in my head. It is so hard when you don't look like you feel. Thanks for your posts!

Anonymous said...

I was diagnosed with EDS 15 years ago, doctors seemed to miss it the first 30 years of my life. I've always had low blood pressure and many of the symptoms of POTS but didn't even know it existed until today. I've seen many doctors, neurologists and even MS specialists who told me they had no clue what was wrong with me. I now believe it may be POTS and have scheduled and appointment with my family doctor to discuss the possibilities and where to go from here.
Thank you for your post, it has enlightened me greatly.

Dawn S said...

(continued from above)

We are being investigated for a mitochondrial disorder. I found someone whose family has almost the exact same symptoms as my family (including hypermobility, POTS, fatty liver, muscle weakness, She has a "real" diagnosis of a specific mitochondrial defect/disorder. It was a gene mutation of 7518 A>G. She said that her family is the first one identified with it (ever) and she was diagnosed by the same mitochondrial doctor I will be seeing at the Cleveland Clinic... I have a feeling our family will be the second family diagnosed with it...

Just a suggestion... For those vegans out there, that may be causing some of the severity of your health issues. My brother and sister were vegetarians from their mid teens and they had worse symptoms than the meat eaters. They have both gotten some improvements since marrying meat eaters and having kids who loved meat, so they have started eating some meat. If you do have a mitochondrial disorder, you are probably SUPER low in carnitine and could be unwittingly making all of the cells in your body weaker and less able to function.

This is related to autism, but it applies to mitochondrial disorders in general. It is a great article: http://www.otherhealth.com/homeopathy-discussion/9491-biochemical-observations-mitochondrial-dysfunction-autism.html

"Impairment of mitochondrial fatty acid oxidation due to carnitine deficiency. Carnitine pumps fatty acids into the mitochondria. With the help of vitamins B6, C, and
niacin, the body produces carnitine from the amino acids lysine and methionine found in high quality protein. Adequate amounts are not thus formed so some carnitine must come from muscle and organ meats in the diet for it is not found in vegetables. Obviously, a low protein or a vegetarian diet would likely create a deficiency of this vital nutrient, and impair the mitochondrial function causing a loss of energy and a build up of triglycerides and fatty acids in the blood and cells."

They also said, "Dr. A. Feller (1988) reported in the Journal of Nutrition that arrhythmias are usually a result of a carnitine deficiency. The heart is enabled to pump more blood, with fewer beats, and with less tendency toward oxygen deprivation. Vitamin E would be its ally in this for it enables muscles to function on 40% less oxygen. This would relieve angina and reduce risk of heart attack. A deficiency may result in chronic tiredness, fatigue, nausea, dizziness and anemia. Lysine is converted to carnitine, and carnitine increases Acetylcholine an important neurotransmitter. Autonomic system abnormalities can be caused by disturbances in Acetylcholine levels...".

I wish you all health and answers to your problems. Please wish me luck in getting answers at the Cleveland Clinic in May.

Krista said...

Thank you so much for your blog. I'm very sorry that you have to deal with these awful diseases, but I'm grateful to you for sharing your story. I also have severe Hyperadrenergic Dysautonomia/ POTS/ Mitral Valve Prolapse with arrythmias, and several other related problems- including chronic fatigue, shaking, eternal nausea, migraines that would fell an ox, and severe IBS. (The daily, severe IBS is a party in itself. I occasionally need hospitalization and morphine to make it stop). I think that I have ED as well- my cartilage is strangely flexible. I've been through all of the diagnostic difficulties you've been through- its ghastly to feel this sick and have people tell you that you are suffering from some sort of emotional or mental malady-- you have my deepest empathy for every time someone sent you to a shrink instead of to a neurologist. It took over 20 years for me to get a solid diagnosis from Dr. Chimali (Neurology) and Dr. Fouad (Cardiology) at the Cleveland Clinic. I'd recommend them to anyone with these symptoms. But, as you say, the meds don't really work and they seem to exacerbate some symptoms while helping others. Pain management helps, but then of course every ER I visit during a crisis labels me as a pariah junkie. (Can't blame them, really- I'm 5'9" and I weigh 105 lbs.) Other than that, though, I look normal. Aside from the weight issue, I actually look wonderful. I agree with you-- I often wonder if life would be a bit easier if I actually looked sick. My main concern now, frankly, is this-- am I going to die? The doctors say no. But the doctors don't seem to understand these diseases very well. I've probably read 200+ case studies, articles, and medical treatises on my particular melange of illnesses, and there seem to be so few of us who have all of these conditions at once, with this level of severity. To be honest, I don't think that I'm going to survive this. Its not my intention to be dramatic. I've stopped breathing twice now. I'm 41 years old- I've been fully disabled for six years. It gets worse every year and I'm pretty much housebound. (Thank God I have a wonderful husband who works at home.) But as for mortality, I really don't think that there are any useful statistics. The actor Brittany Murphy died of an apparent overdose, but her brother claims that it was really her Dysautonomia/POTS. The drugs she was supposedly abusing are all the same drugs that I take. Since you seem to have the most closely similar set of complex problems that I have found in another patient- what do you think? Do you trust the statistics? I hope you don't find the question too upsetting, but... do you think that this particular combination of diseases is fatal?

I wish you the very best in life, and again, I thank you for sharing your story. Best of luck to you.

Krista Levy

Hailey said...

my name is hailey i am 12 years old and i was diagnosed with POTS last year it has been really tough for me and my worst symptom is the chest pains! my teachers mostly think im faking and it irratates me! my parents try to put it off kindof like its not a big deal but it realy conserns me! im really thankful for this website to share my thoughts with people who have my same condition! i am currently going to greenville NC to the heart institute at ECU every three years but my symptoms seem to be getting worse! im trusting god to take care of me but its hard!but i will continue to pray for healing and i incourage you too to!
Hailey :)

Krista said...

Dear Hailey,

I'm so sorry to hear that you are dealing with this. There are some things you need to do and lots of things you need to know. I have been dealing with POTS and very severe Dysautonomia for most of my life, and there are many, many things you should know that can help, especially as you get older. This is not a well-understood set of syndromes and doctors- even really good doctors- don't understand it very well, partially because it affects so many different parts of your body. I think I can help you, but you are too young to contact people you don't know on the internet and typing is a little bit hard for me at the moment. If you wish, I'd be happy to speak with your mother on the phone. Please tell her that she can call me any time; I think that my experiences over the past 20 years could help you a lot and I don't want you to have to go through the same frustrating, trial-and-error experiences that I've had to deal with. (I can shed some light on the chest pains, for example. Also, you should know that there are only a very few medical institutions in the US that are equipped to deal with your condition. Honestly- there's so much information, it would be much easier to simply talk to one of your parents. My name is Krista Levy, by the way. I used to be an executive at Warner Bros, and I've been disabled with problems relating to POTS/Dysautonomia for six years. My phone number is 661-972-3572 and my email address is kristalevy@gmail.com. As I said, please discuss this with your parents and see if one of them would like to chat with me. I very much hope that I can give you some help. If they call and I don't pick up, tell them to go ahead and leave a message with a time when I should call back. (I'm in California, so thats Pacific Standard Time.)

Take care and hang in there, Hailey. And don't let anybody tell you that any of your symptoms are "all in your head." They aren't. Just because doctors (or teachers) can't actually see problems in your body doesn't mean that you aren't experiencing exactly what you say you are experiencing. I know you are. The worst part of the conditions you have is not being believed when you tell people what you feel- and not being believed.

Good luck to you, young lady.

Warm regards,

Krista
(And, just a reminder- DON'T put any of your personal information up on this or any other web site.)

:)

Krista said...

Dear Hailey,

I'm so sorry to hear that you are dealing with this. There are some things you need to do and lots of things you need to know. I have been dealing with POTS and very severe Dysautonomia for most of my life, and there are many, many things you should know that can help, especially as you get older. This is not a well-understood set of syndromes and doctors- even really good doctors- don't understand it very well, partially because it affects so many different parts of your body. I think I can help you, but you are too young to contact people you don't know on the internet and typing is a little bit hard for me at the moment. If you wish, I'd be happy to speak with your mother on the phone. Please tell her that she can call me any time; I think that my experiences over the past 20 years could help you a lot and I don't want you to have to go through the same frustrating, trial-and-error experiences that I've had to deal with. (I can shed some light on the chest pains, for example. Also, you should know that there are only a very few medical institutions in the US that are equipped to deal with your condition. Honestly- there's so much information, it would be much easier to simply talk to one of your parents. My name is Krista Levy, by the way. I used to be an executive at Warner Bros, and I've been disabled with problems relating to POTS/Dysautonomia for six years. My phone number is 661-972-3572 and my email address is kristalevy@gmail.com. As I said, please discuss this with your parents and see if one of them would like to chat with me. I very much hope that I can give you some help. If they call and I don't pick up, tell them to go ahead and leave a message with a time when I should call back. (I'm in California, so thats Pacific Standard Time.)

Take care and hang in there, Hailey. And don't let anybody tell you that any of your symptoms are "all in your head." They aren't. Just because doctors (or teachers) can't actually see problems in your body doesn't mean that you aren't experiencing exactly what you say you are experiencing. I know you are. The worst part of the conditions you have is not being believed when you tell people what you feel- and not being believed.

Good luck to you, young lady.

Warm regards,

Krista
(And, just a reminder- DON'T put any of your personal information up on this or any other web site.)

:)

Anonymous said...

Has anyone with this syndrome been tested for heavy metal (mercury) toxicity? If so, has anyone been treated successfully for it by detoxing from heavy metals?

curious MD

Anonymous said...

It breaks my heart reading these posts! My 15 year old daughter was officially diagnosed with POTS & Raynaud's syndrome about 1 1/2 years ago, but she had symptoms for about a year before that. Fortunately, we are blessed with an amazing pediatrician who recognized the symptoms & immediately sent her to both a rheumatologist & a cardiologist who were able to diagnose her conditions. She was started on medications to manage her symptoms (norvasc, lyrica, and pyridistigmine), which have helped her tremendously--they have not eliminated her symptoms, but have definitely made things more tolerable for her. However, we were still unsure of how she developed these conditions...until 2 weeks ago when she went to the genetics clinic & was diagnosed with EDS type 3--hypermobility type. Now at least we have an underlying cause--thank goodness! Even though it doesn't change her treatment, it's a little more comforting to know more clearly exactly what we're dealing with. I would strongly encourage any of you who are seeing doctors that won't listen to your concerns or who won't continue working to help you to search out doctors who will listen and who will help. There are phenomenal doctors out there that can help these conditions be at least more tolerable and manageable. Also, make sure you have a 504 Plan written if your child is in school. This protects them legally and allows for the accomodations they may need at school. Thank you for sharing your stories & helping us know we're not alone in this struggle!

www.publicidad.org.es said...

It can't work in reality, that is exactly what I suppose.

Anonymous said...

hey you dont get e d s over night you weardo. so back off you know the people that realy have it gets affended.

Anonymous said...

FYI- Look, previous Anonymous commentator, perhaps you are frustrated and bitter with your own health circumstances. That is understandable but this isn't a proper forum for rudeness. Most people who post here are looking for help. We are sick. Some of us are very, very sick and such comments are simply not constructive. On a softer note, I hope you are OK.

Anonymous said...

I am glade that I have found this blog. I was diagnosed with pots about two weeks ago by a electrophisologist. For about one year I have been experiencing rapid heart rate and dizziness. The past month I have had near fainting episodes. I am 33 yrs old married with two children 7 and 5. I am having a difficult time coming to terms with this. I sm a full time nurse and take pica on the side. I was recently tried on Padilla and had horrible side effects. I still have nausea and cannot eat well. I sm currently taking salt tabs and increasing fluid intake. I am fringe to keep my hopes up that there is something to help my symptoms so I can lead a decent life. I do cry a lot daily. Just need help coping. Praying everyday for gods touch. I hope more research goes into this to help everyone who has to deal with this. God bless.

Anonymous said...

Hi, I was just diagnosed with Pots. I was told that I had Vertigo 11 months ago and then they finslly did MRI and found a brain tumor. Docs said this is cause of symptoms. Tumor was removed but symptoms persisted up until now- 11 MONTHS LATER. I am frustrated and tired. I am a single mom of 3 boys. I feel like nobody understands this horrible nightmare I have been living with. Days when I feel good, people say I look like a person who is fine and maybe its anxiety...LOL!!!!!! I would love to chat with anyone who can relate or has any advice. Gatorade and salt seems to be my prescriptions. Thanks.....POTGAL

SMB at Home said...

Hello. Thank you for sharing. My brothers (identical twins) were diagnosed with Ehler-Danlos syndrome. Oh well. They have the stretchy skin and hypermobility, and one of them has a hole in his heart. I don't have double jointedness or that stretchy skin. I'm the exact same height as my mother, 5'1", and as my maternal grandmother, 5'1".

At 15 I began to have symptoms, and at 18 I was diagnosed through witnessed convulsions with temporal lobe epilepsy due to a possible brain tumor.

It turned out to be a benign tumor, a ganglioglioma I think? resulting from an initial physical scarring in early infancy which self-perpetuated through the epileptic process. Got it fixed with surgery eventually. Highly recommend surgery over drug treatment if you are sensitive to neurological drugs. The neurological drugs can be nasty.

So, among other things, in my teens I had low blood pressure. I'd collapse, and black out from low blood pressure even at rare times. Alcohol lowered my blood pressure, particularily the morning after.

Very very very different and distinct experience from blacking out/seizures from epilepsy. As an adult American in my 30s I rarely ever have low blood pressure symptoms now.

Does this sound familiar to anyone? Can you dig? I'm wondering if susceptiblity to epilepsy might have anything to do with POTS? There is SUDEP. I've had heart palpitations. Eh. Not scared, just curious. So curious. I've had heart palpitations. Mentioned them to a doctor once before a diagnosis of epilepsy and was told I was being silly. Get less palpitations now as I'm older.

Krista said...

To SMBat home: I have severe, generalized, progressive dysautonomia and POTS. I was interested in your article because of the epilespy connection. I've been in the care of so many doctors -gastroenterologists, neurologists, cardiologists, etc over the past 20 years. I've been to the Cleveland Clinic, which is probably the best place in the world for diagnosing Dys and POTS. And none of it helped. My husband and I have conducted our own research for years, and we actually determined that dysautonomia/POTS was the problem before the doctors were able to confirm it. A few months ago I was dying- literally. I was unable to digest at all and I fell down & lost consciousness pretty much every time I stood up. I was frequently having respiratory failure and choking out. Finally, my husband realized that I was having seizures of some sort and he arranged to get me Neurontin, which lowers over-excitement in the brain and is commonly used to control epileptic symptoms. After I was on the drug for 18 hours, the pain stopped!!! All of my symptoms improved. Since November, I have been able to eat- just like a normal person. I still have debilitating symptoms and I doubt I'll ever be able to do many normal things, but all of my symptoms are better. I have minimal side effects from the Neurontin and , though I am not cured, I have gotten so much of my life back. I now only have respiratory & cardiac distress when I am under extreme stress (as in... airline travel and Christmas with the family) :) ...but I would recommend that you try Neurontin. That drug, in combination with Fludrocortisone (which keeps the blood levels up), lots of water, Pindolol (for tachycardias and arrythmias) and monitored pain management for godawful migraines... the combination of these drugs saved my life and has given me so much more physical freedom. I was a virtual shut-in for more than 2 years. Now I am able to safely drive a car (!)and take care of my house and my husband. I can walk through a flourescent-lighted supermarket without losing consciousness. I would recommend that anyone with Dysautonomia/POTS try Neurontin. It may not work for everyone, and the side effects should be closely monitored, but it helped me so much- it gave me a life. Be well everyone, and good luck to all of you.

Krista said...

To SMBat home: I have severe, generalized, progressive dysautonomia and POTS. I was interested in your article because of the epilespy connection. I've been in the care of so many doctors -gastroenterologists, neurologists, cardiologists, etc over the past 20 years. I've been to the Cleveland Clinic, which is probably the best place in the world for diagnosing Dys and POTS. And none of it helped. My husband and I have conducted our own research for years, and we actually determined that dysautonomia/POTS was the problem before the doctors were able to confirm it. A few months ago I was dying- literally. I was unable to digest at all and I fell down & lost consciousness pretty much every time I stood up. I was frequently having respiratory failure and choking out. Finally, my husband realized that I was having seizures of some sort and he arranged to get me Neurontin, which lowers over-excitement in the brain and is commonly used to control epileptic symptoms. After I was on the drug for 18 hours, the pain stopped!!! All of my symptoms improved. Since November, I have been able to eat- just like a normal person. I still have debilitating symptoms and I doubt I'll ever be able to do many normal things, but all of my symptoms are better. I have minimal side effects from the Neurontin and , though I am not cured, I have gotten so much of my life back. I now only have respiratory & cardiac distress when I am under extreme stress (as in... airline travel and Christmas with the family) :) ...but I would recommend that you try Neurontin. That drug, in combination with Fludrocortisone (which keeps the blood levels up), lots of water, Pindolol (for tachycardias and arrythmias) and monitored pain management for godawful migraines... the combination of these drugs saved my life and has given me so much more physical freedom. I was a virtual shut-in for more than 2 years. Now I am able to safely drive a car (!)and take care of my house and my husband. I can walk through a flourescent-lighted supermarket without losing consciousness. I would recommend that anyone with Dysautonomia/POTS try Neurontin. It may not work for everyone, and the side effects should be closely monitored, but it helped me so much- it gave me a life. Be well everyone, and good luck to all of you.

Tess said...

hello, I'm 19 years old. I have a daughter that is 1 year. I have had pots symptoms as a kid, but became extremely worse after the birth of my daughter.. I was wondering how you manage to work.. or if you don't work how do you manage to pay for doctor bills? I know it will take up to 2 years to get on disability and how crazy the advocates may think I am. Numerous times I've been told I'm crazy. Even attempting to enjoy my beautiful daughter is difficult on days like these. If you could give me your input it would be greatly appropriated. Thank you ^^

Tess said...

hello, I'm 19 years old. I have a daughter that is 1 year. I have had pots symptoms as a kid, but became extremely worse after the birth of my daughter.. I was wondering how you manage to work.. or if you don't work how do you manage to pay for doctor bills? I know it will take up to 2 years to get on disability and how crazy the advocates may think I am. Numerous times I've been told I'm crazy. Even attempting to enjoy my beautiful daughter is difficult on days like these. If you could give me your input it would be greatly appropriated. Thank you ^^

Krista said...

Dear Tess- I'm so sorry about your work situation. I read your question about finances. Its impossible to work with some forms of Dysautonomia- I haven't been able to work since '05 and, even though I have excellent care and access to really helpful medications, I doubt I'll ever be able to work again. (Hell, I'm happy when I can shower and take care of my house.) I loved my work and I miss it. I miss it a lot. But I know that I'm lucky. Very, very lucky. I had a good career. I'm 42. I've been married for 14 years to a wonderful guy who understands the illness. And, thank God, I have private PPO coverage from my private insurance both for myself and my husband, which will be provided until I'm 65 as part of the benefits package I have from my old job. I also had to get Social Security disability because of some odd quirk of California law. SS does take a long time and several rejections will probably happen before they give you benefits. I think I was rejected four times. I think that your benefits may be calculated based upon your work history and past salary, but I'm not sure exactly how that part works. I do know that you will have to prepare your case very carefully. I'd recommend using a lawyer, if possible. You'll probably end up going before a judge at the last stage. I did. The entire process was lengthy and but the judge was kind. Make sure that you have all of your medical records in order and speak to the judge's office- usually they will tell you exactly what you need to do to prepare your case properly. Its important that you do exactly what they tell you to do and provide everything that they ask for. I'm sorry to say that it will probably take a year or two before you get to that stage. YOu should check and see what short-term SS disability benefits are available to you in the meantime. I hope that you will be OK- it will probably be important for you to have family to rely upon. You are so very young to have to deal with such a debilitating health problem, especially now that you have a baby. I can't imagine how difficult that must be. Please remember that there are people out here - people who read your story through your posts- who are rooting for you and praying for you. I'm going to add you to my prayers, Tess. And I'm sending you a hug. Hang in there, sweetheart. Be well.

Anonymous said...

does anyone know what it feels like to be growing OUT of POTS? I have had POTS for 6 years (well, diagonised for 6 yrs), and latley I feel like all my symptoms from 6 yrs ago are coming back. I'm having palpitations, dizziness, vertigo, and as a result, anxiety. My doctor did tell me a yr. ago that if I were to no longer need my medication (a beta blocker and migraine pill), I would know! He said I would feel VERY uncomfortable. Part of me is hoping it's going away, but a large part of me is worried it's getting worse.

Katie

Krista said...

Hey, Anonymous- I wish I knew. I've read that people grow out of POTS, and perhaps they do. But if you have generalized Dysautonomia (which is the umbrella problem under which POTS is diagnosed)then I'm pretty sure it doesn't go away. Mine is progressive and all the POTS symptoms have grown steadily worse over the past 22 years. If you just have straightforward POTS, then I hope that you grow out of it immediately!!! :) Best of luck to you. Be well. And- last thought- have you tried Fludrocortisone (also called Flourinef?) It keeps your blood level up and helps with the POTS symptoms a LOT.

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sick and tired in Kansas said...

I am 41 years old and was diagnosed with FMS when I waw 25 and EDS-III finally when I waw 36. I have been reading up on POTS and most of the symptoms sound familiar. The only thing is I have never really passed out. I have come close, but not fully. I had a tilt table test back in my 20s and do not remember what the decision was at that time. Though I do remember throwing up. I also sometimes have these episodes where I cannot move or speak, but am totally aware of what is going on around me. Have you ever heard of something like this? thank you for the information you post. It is always nice to know one is not alone.

Anonymous said...

i am 17 years old and have been diagnosed with EDS( hypermobility) and POTS recently. i have been to the ER multiple times through out the two years it has surfaced the first time this ever came about i was checking on my younger brother and came back inside the house to find my self extreamly dizzy and knelt down and put my forehead to the ground then proceded to call for my mother in the other room she took me by the shoulders and lifted my upperbody upright and i promptly past out. she then took me to the ER and they told me i had virtigo and sent me home one episode i past out and laid down on my back and repeatedly passed out another time i passed out standing up 9( completely out of the blue) and got a concusion from hitting my head on our tile floor. most of the time i dont remember these episodes ill be one place fine. then i wake up somewhere completely different. ive had so many IVs now my viens are so weak they blow my viens every time they try and give me one. i have severe reflux since birth and have had issues with my stomach and intestines my whole life. im 5'4" very pale skin and about 98 pounds i have never made it to 115 in my entire life. all these atribute to the EDS.. or so im told. a very invisible sickness indeed. i have passed out at school multiple times also. and was always writen off as anorexic and havent eatten that day. lazy because im so pale, or because my joints hurt to much to get up from a seat to change class and walk two hundred yards through pushing, mocking children. i COMPLETELY understand not being seen for strength of actually getting up and making that two hundred yards seven times a day five days aweek my junior high and high school years. people dont understand this illness as much as cancer or any other wide known illnesses but. it could be fatal if i was to pass out on my tile floor and crack my skull or pass out down my stairs. its a invisible hurt inside.

Rebecca said...

I am sure I have both POTS and EDS, but how do I find a doctor to take me seriously? I am so tired of trying to get help and feeling so crappy, but looking perfectly healthy on the outside...

Can anyone help?

Rachel Perales said...

I was diagnosed with EDS last April after a car accident, but have been experiencing heart palpatations and dizziness for a few years now. I have always been very hyper flexible since I was a kid though. In 2010 I had two back fusion surgeries and was considered disabled last year. Just last month I had ligament reconstruction on my left ankle and my right ankle hurts, my shoulders hurt and pop out, I have these horrible chest pains that last what seem like forever. I had a heart ultrasound and it was normal, but the dizzy spells make me have to hold on to the wall or drop to the floor. I am on so many medications, for migraines, depression, anxiety, nerve pain, you name it, I got it. Pretty sad, I'm only 35 and I feel like I live in my bed. My two kids don't like to see me like this and it seems to give their dad more ammunition against me. I was also born with a non-functioning thyroid and diagnosed with Lupus in 2009 and Sjogren's. My joints are in constant pain, especially my fingers, I am constantly fidgiting just to try to relive the pain I am in. I am seeing my Dr in the morning about my chest pain last night and the dizziness and to refer me to an Endo maybe until I can see a Rhume.

Michelle Wentlandt said...

As a young woman battling the medical system this makes me feel less lost right now. I am 19 and only just now having doctors looking into diagnosing me with EDS, when they should have the first time I broke my ankle instead of shattering my leg at the age of five. They have been saying I am 'too stretchy' and would grow into it. This past October I had to have my shoulder completely reconstructed before I could begin college after spending all of high school with my arm barely connected to my body by only skin and severely damaged muscles due to the hyper extended nature of my ligaments. The injury occurred my freshman year, just over five years ago but the doctor blew me off. Now however because of the extensive scarring all over my body, the dangerous level of hypermobility, and now my heart showing once more that I am not paranoid. Because having a pulse of 112 and a blood pressure of 111/72 aren't the right match when you're at rest and only 128lbs with no drugs in your system. Pardon my rant I apologize for the life story. And any advice about coping with eds and ptsd along with how to find specialists would be great!

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