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Does POTS get worse over time?


DSM3KIDZ
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I've recently been diagnosed with POTS and my symptoms are managable. I didn't know I had a problem till the doctor took my bp/pulse while standing. At least I know why I've been feeling zoney lately. I also have gastroparesis which both problems occurred at the same time Aug 2004. I was reading some boards and I was wondering if things get worse over time? I'm scared to think I might not be able to stand or something. I have three small kids 6,3 &1 so I need to stand. I'm having a hard time managing my GP and am scared for the future. I get autonomic neurapathy testing done tommorrow.

One more question is autonomic neuropathy the same as dysautonomia?????

Any feedback would help Thank You

Dayna

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What will your tests entail, Dayna? Let us know how they go ...

I'm surprised to hear that your doctor told you that you had pots on the basis of a standing pulse measurement. More typically, people go through a lot of testing--first cardiac to rule out other possible reasons for tachycardia... and then autonomic (tilt table test being the most important and considered the diagnostic test for POTS).

I loved your line "I didn't know I had a problem until ..." That's an excellent sign! It means that you can do some things to help you feel better than you currently do (non pharmaceutical interventions); I think it also means you don't have to worry that things are going to get worse for you over time!

People typically find their symptoms are cyclical anyway--getting worse during menstruation, for example--and not progressive. Only extremely rare forms of dysautonomia are progressive, and it doesn't sound like this is what you have.

I strongly recommend as first order of business that you get medical compression stockings--30-40, thigh high or to the waist. Especially if you need extra energy to stand and take care of your kids. They help so much! Also up your salt and water intake, gatorade's great, etc. You can read lots about these measures on this site.

gotta run; but good luck tomorrow!

m

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Hi, Dayna,

I'm new to the forum and haven't been officially diagnosed with dysautonomia yet, although I was diagnosed with POTS ten years ago, but what I've found is that I have symptoms every day, but most days are very manageable. I can drive, walk, stand for long periods, grocery shop, etc. I have spells when I can't function at all only after I've had the flu or high levels of stress, and those times have been rare, like every two years or so. (It does take me about three months to recover, though). I don't know your situation. If you've read the entries here, you'll notice that everyone seems to be different, even though most have the same condition.

I can't help you with the autonomic neuropathy part; I don't know what that is. Sorry.

I go in for a tilt table test the first week of April, and everyone at this forum has been soooo supportive of me. I'll tell you the same thing they've told me: it's scary to have this condition, but it'll be good to have the tests and know exactly what you're dealing with so you can learn your condition and learn what you can and cannot do.

I raised two children and graduated college while ill with this. It took me two years longer than most people, and a lot of help from my mom, but I did it. You can too. It's hard. but hang in there. Keep us posted.

LindaJoy

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Dayna

Regarding neuropathy, this recent discussion (link below) may help. This can be one of several to many causes of POTS.

http://dinet.ipbhost.com/index.php?act=ST&f=1&t=2061

I doubt if knowing whether this is the cause will help with your treatment at this point. There is just so much unknown still. You may still go through trial and error to find meds and other treatments that will help with symptoms, reglardless of the results of this test. Many of us have not had autonomic testing of this kind done, so don't know what is causing our POTS--except to guess.

In response to Merrill's comment about Tilt Table Test and ruling out other causes of your symptoms, including tachycardia--most of us have been diagnosed with a Tilt Table Test and have had other tests to rule out other causes. It certainly makes sense to rule out other causes. However, I'll just say that my sister was diagnosed with POTS last year in the very same way you describe. She saw an electrophysiologist who measured her heartrate sitting and standing and he diagnosed POTS without further cardiac testing.

Regarding your concern about POTS getting worse--it is unlikely that you are going to get worse now that you are diagnosed and can start some treatments that will help. But, there is a lot unknown about this condition still. Many of us find that certain triggers can at least temporarily make symptoms worse--infections, allergy flare-ups, significant stress of any kind, surgery, etc.

Glad you found us and best wishes in finding solutions that will help you feel better.

Katherine

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PS

Send me a personal msg with your e-mail address and I will send you this document in PDF format.

The Postural Orthostatic Tachycardia Syndrome:

Definitions, Diagnosis, and Management

YOUSUF KANJWAL, DAN KOSINSKI, and BLAIR P. GRUBB

From the Electrophysiology Section, Division of Cardiology, Department of Medicine, The Medical College of Ohio,

Toledo, Ohio

August 2003

Katherine

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Guest tearose

Hi Dayna, hope all the tests went well. I agree that a month seems too long to wait! Are they unable to read the results? Are they being sent out somewhere for interpretation?

Well, if you have to wait, we'll help you pass the time!

take care, tearose

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Well I know I have POTS from the tilt table test and I know I failed the sweat test because I didn't sweat except for head when placed in the sauna. I'm going to call on Monday to see if we can get results sooner. I'm really scared and don't know if I want to know anything sooner because I don't know what is causing autonomic neuropathy and being a mother of 3 (6,3&1) I'm scared of the worst. I need to live long and healthy for them.

Dayna

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Dear Dayna, as a mother of two, son 11 and daughter 7 1/2, I can say only one good thing, you probaly won't die form POTS, be sick yes, die no.

My biggest trouble is missing out on alot of fun, especially in the summer as the heat rises.

best of luck and Ihope you can get your results soon.

blackwolf

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Dayna

At this point autonomic neuropathy is believed to be one of the leading causes of POTS. However, no one understands exactly what causes the neuropathy. It does not seem to be progressive in most people, and even gets better over time for many people. So please don't feel worried at all that your life is over in any sense, just b/c you get this diagnosis.

Like others have said, you may find that you will have to make some lifestyle modifications--hopefully they will be MINOR--things like keeping well-hydrated and adding more salt to your diet. I have not had this test, but I suspect my POTS is caused by neuropathy. In any case, after a very bad bout with POTS, I have recovered to a very functional level. I still have to keep well-hydrated, take extra salt, avoid prolonged standing (walking for long periods is not a problem for me though), take a beta blocker as needed. Sometimes I am pretty tired and I don't have great exercise tolerance (but it is slowly improving). I have tried stopping my low-dose SSRI again. I tried before and after two months a lot of symptoms came back and I had to go back on it. This time, I seem to be doing a lot better without it. So, what I am trying to say, is, please don't lose hope--there is no need to. You may not get worse, and even see improvement with time. And as other have said, POTS is NOT a death sentence. We are lucky.

Katherine

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  • 2 weeks later...

Hi

As others have said, POTS won't kill you, but can limit your activities, depending on the severity of your symptoms. There are some people with mild symptoms who can be easily, well controlled. I have children ages 9 and 3. Trying to keep up with them is the hardest thing I do physically. They have so much energy. Ahhhh, to be young and healthy again. I know that it may be hard to hear, but the less you worry the better. Stress and worry makes our symptoms tons worse, mine anyway.

POTS and neuropathy are associated. About 5 to 10 percent of patients with POTS get neuropathy. It often does not show up on an EMG because the small fibers are involved. Diabetes, thyroid problems, and B12 deficiency can cause neuropathy too. Neuropathy means that the nerves, probably in your legs, are slowed down. It is not life threatening.

Dr. Low told me that the neuropathy is not usually progressive. He says that POTS typically improves around age 50. There is natural "hardening of the arteries" as we age. In POTS our blood vessels don't have good tone. The hardening of aging helps the blood vessels to be more firm so our heart and therefore our brain gets more blood flow to it.

HAS ANYONE REACHED AGE 50, AND REALLY GOTTON BETTER? I have 10 years to go, but don't want to have false hope.

Karyn

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:P Wow, REALLY hate to be the knell of discouragement here, but I am 50 as of last December, and I am definitely not getting better. I am in fact the worst I have ever been. However, I do have other illnesses which contribute to my overall health. I have meneires, which is an inner ear disorder and I have it in both ears. One side is a hearing loss type and the other, vestibular, or just whacks out my balnce, but doesn't cause significant hearing loss, I've also had fibro and cfids for a very long time, since I was 20. I did work fulltime until 2003. So I was functioning for a long time, even though I didn't feel well. It wasn't until my cardiac ablation that things kind of tumbled down for me. So, I'm not sure I'm the best source. I guess it all depends on whether you have overlapping illnesses, and how well you respond to treatments. I think this is a process that waxes and wanes for most of us. There are times we just feel better, and times we wonder if we ever will. I can see the theory behind the age thing though. I don't have syncope and am not sure I have significant blood pooling. I will never know exactly what is going on with me, but at this point don't really care, as long as I am believed. I guess there are just so many factors and this is so variable in everyone, it's really hard to determine. I do know there are people who have come on and have gone back to their previous lifestyles, so we should never give up hope.

Karyn, so sorry, promised I wouldn't do this, but are burning soles a symptom of neuropathy? I have tingling and pins and needles, but the bottoms always feel like I'm walking on hot coals. I haven't really seen this in neuropathy patients I've taken care of, but most of them were diabetics or pvd's, so they would have altered pain thresholds. When I applied to NIH, they had that question on the application, but didn't indicate what it was for. I have had my B levels checked and they are fine, so am assuming it's some weirdo neuropathy pots thing. My pcp says some of his aids patients get it, but they can't quite figure out what it is. I don't have aids, so don't think it's the same. Thanks. Don't answer if you don't want to get into one of those let's ask the doc scenarios, it's really hard to hurt my feelings. thanks! morgan

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Hi,

I've assumed autonomic neuropathy and dysautonomia were the same, whever I see my internist he writes one or the other for my diagnosis. I was diagnosed at age 39 but think I have always had POTS. My doctor says when I was younger I could just tolerate the symptoms better. I can relate with the gastroparesis, I drink alot of protein shakes and take reglan if I'm going to eat food.

Karyn, I am now 49, I actually was doing pretty well until last year when the symptoms became really bad again. I had a hysterectomy when I was first diagnosed for fibroids. I have been on estrogen therapy until October. My physician thinks now maybe my vessels will harden. He describes them as rubbery like a babies. Dr. Low says it's just a labile autonomic system. They both believe as our arteries get harder our symptoms should improve. I'm thinking maybe that is why my bp got high on my tilt table test last week because they are getting firmer. I am getting less syncope. I hope they are right. Who would think we want to get old :P But if it improves our quality of life I'm for it. I think my worst symptoms now are the fatigue, nausea, imappropriate sinus tachycardia and just a generalized flu like feeling. The situational depression doesn't help, I had to give up my school nurse job in October. I miss it soooo much. I notice now have less of a startle response like I did when I was younger. For me the symptoms have waxed and waned, I did really well for 2 years on Prozac then it stopped helping. Lexapro worked even better for 2 years then it didn't help. I haven't been on an SSRI now for a couple years. I did try Lexapro again this summer but couldn't tolerate the GI side effects. 4 years ago I had no side effects at all. Go figure. It's great to have you on the forum Karyn. :) The drug that is recommended now is mestinon instead of midodrine. Haven't been able to try it yet because my sodium stays too low.

Dawn

PS I'll turn 50 in January. Maybe it will be the best birthday ever.

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I am 40, and have had POTS/NCS since very early childhood. Dr. Grubb believes I was born with it, and my parents report symptoms from the beginning, such as my diffuculties waking up, being groggy, accident prone in the mornings, and once I was able to walk, I could be found sleeping in the most unual places/positions. Isn't it amazing that as an infant, my instinct was to lie down!? :P probably saved me from even more concussions than the ones I got as an older kid and grown up...that's a lot of head cracking I've gotten (at least 10 concussions, and 2 skull fractures, and a broken nose).

Like the poster above, I don't mean to dampen any hopes--I just want to share that so far, I've not gotten better over the years. Instead, my symptoms have waxed and waned, but in general have gotten worse. I am fortunate that I'm still able to work, but there are times when question my sanity... and my body doesn't play along with my choice.

Additionally, I was told to expect a worsening and/or intensifying of my symptoms when I hit menopause by Dr. Grubb.

Nina

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Dayna

I guess the bottom line is obvious--there is no crystal ball. There are many different experiences with POTS and not enough is known yet for a doctor to give you as an individual any definite prognosis.

The primary point I want to make is to keep in mind that in general, it is probably the most ill individuals who use or remain using this forum. I am not diminshing the value of their input or the validity of their experiences AT ALL. But, I want to point out that the responses here may or may not really reflect the "average"/"typical" POTS experience. I think every time this question about long-term outlook is posted, someone gets around to pointing this out. This may be a biased group here.

Despite that, you have gotten great feedback and advice from everyone who has responded.

Take care,

Katherine

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Hi

Katherine:

You make an important point. We are a biased sample here. I have seen patients with very mild symptoms who don't even need to take medication. They just have symptoms with infection, vomiting, sleep deprivation, for example. Those patients probably won't feel the need to join the discussion forum on a regular basis because their lifestyle really has not been altered, certainly not drastically like some of us. I hope I get better around 50 but I am not counting on anything. I have had false hope in the past and it is crushing. I think positive attitude, acceptance, and perserverance help me the most.

Morgan:

Burning sensations are one of the most common pain sensations that my patients describe when they have neuropathy. I have the burning sometimes too. There are medicines that can help like neurontin. Other causes of the neuropathy besides POTS could include diabetes, thyroid dysfunction or low vitamin B12 level. AIDS patients can have neuropathy from low B12 level or immune deposits on their nerves.

Karyn

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Karyn, I have neuropathy in my hands, and feet--due to nerve impingement that didn't get corrected soon enough--so I've lost some function and sensation permanently. Yep, mostly burning sensations, although occassionally, I get itching, and sometimes, very sharp pains and spasms/jerking (clonus). My neuro has written that I have neuropathy, reduced wave velocities on EMG, with fasiculations and clonus.

Anywhooo, just wanted to add that my neuropathy is NOT related at all my autonomic problems. Also, while my ANS pumps out lots of epi and norepi all day long, it's functioning perfectly--it's responding to my loss of bp and perfusion of blood to the brain. My neuropathy is from a spinal injury as a child that went undiagnosed for 30 years (ruptured disc, that ended up leaving me naturally fused at c5-6, but in a bad position with encroachment on the cord). Had it repaired, and got some sensation back in my extremities and improvement in swallowing, but unfortunately, it comes with the neuropathies.

Nina

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My doctor says I have autonomic neuropathy. Which I'm sure you know deals with the automatic functions of your autonomic nerves. There must be all sorts of neuropathies (?) because I have POTS and GP from the neuropathy. Are you guys talking about peripheral neuropathy?

Sorry, I'm new to all this and don't always understand the different terms. S

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I've actually had my testing at NIH that should all my cardiac nerves nerves are functioning, are they are distributed normally.

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Guest tearose

I don't enjoy this topic cause it makes me get more "real" with the reality of my particular situation. I am not getting better, I am getting worse. It has been 14 years of progression and yes, there were times of improvement and times of relapse. Not to discourage anyone but to be "real", I share this.

Now I am in the slow process of going either back to Mayo, MN for the third time in 14 years, OR going to a closer facility; the partnering hospitals of Mass General in Boston, to see if I am now in a diagnosable neurodegenerative process.

Isn't the only accurate way to diagnose cardiac denervation through a PET scan? (did you have this Nina at NIH?)

tearose

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Hi everyone,

Yes, DSM3KIDZ, I was talking about peripheral neuropathy (slowing down of nerves in legs, and sometimes legs). Sorry, I was being confusing. Yes, autonomic neuropathy could refer to dysfunction of the autonomic nerves (to organs and blood vessels for example) in the autonomic nervous system.

I will be leaving for the American Academy of Neurology meeting tomorrow, and will be gone all next week. I will be in withdrawal, not being able to "talk" with everybody.

I would talk more now but have too many trip preparations to make. I hate traveling because it always messes up the POTS, but I look forward to updates in neurology, especially autonomic disorders!

Karyn

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