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Dysautonomia without POTS???


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I have been diagnosed with dysautonomia but I do not suffer from POTS. Anyone else here have this condition? My symptoms include: chils, hot flushes, reddening of the face, sweats, difficulty sleeping, fatigue, general feeling of ill-health, flu-like symptoms, occasional diarrhea and tachycardia and loss of appetite. I am on Atenolol which helps with the tacycardia. I recently have had a normal panel of blood test including thyroid.

I also am taking an antidepressant and anti-anxiety med.

Any help is appreciated. I am so depressed. I am 37 and I am home-bound due to my symptoms. I have been diagnosed in 1996.

Diane

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Diane,

I am glad you posted that question. Who dx'd you and where did you go for testing? I am sorry that you are bedridden, but I'm glad you found this forum, as you'll find everyone here to be so supportive. Also, besides meds, are you using fluids, salts, hose, etc. to help with your symptoms? Or do those things not help you at all?

I know there are many types/reasons for dysautonomia, and many of us on the forum have POTS, but I, too, was wondering if there are any that fall into a gray area, such as yourself. I might be one of those people as well. I was initially given a dx of dysautonomia and POTS by one doctor, but the neuro at Mayo didn't think I had POTS b/c I passed the TTT. I do have a lot of the classic symptoms of POTS though, but usually only after I've been lying down for several hours or when I get up first thing in the a.m. Some days are better than others. I get tachycardia often, usually triggered by eating large meals, sugar or alcohol or bad dreams at night. I also get tachy due to surges of adrnealine when startled or stressed or anxious about something. My breathing gets very irregular some days, like my body forgot how to breathe. My body temp and gut motility gets out of whack a lot too.

Did you pass a TTT? Is that how they ruled out POTS for you?

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Dianna,

I also have dysautonomia without POTS. I have a lot of the same symtoms as you do.

I was initially diagnosed with POTS but found out that I most likely have NCS and OI. But I'm definitely in that gray area.

I just follow the general guidelines that the POTS peope use. Increased fluid, extra salt etc.. I can't tolerate meds very well so I'm not curretly taking any meds.

I get tachycardia sometimes from certain foods, alcohol, and medications. And my Hr goes up when I stand but never as high as those with POTS. Mine might go up 30 points sometimes but not all the time.

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Diane,

I am glad you posted that question. Who dx'd you and where did you go for testing? I am sorry that you are bedridden, but I'm glad you found this forum, as you'll find everyone here to be so supportive. Also, besides meds, are you using fluids, salts, hose, etc. to help with your symptoms? Or do those things not help you at all?

I know there are many types/reasons for dysautonomia, and many of us on the forum have POTS, but I, too, was wondering if there are any that fall into a gray area, such as yourself. I might be one of those people as well. I was initially given a dx of dysautonomia and POTS by one doctor, but the neuro at Mayo didn't think I had POTS b/c I passed the TTT. I do have a lot of the classic symptoms of POTS though, but usually only after I've been lying down for several hours or when I get up first thing in the a.m. Some days are better than others.  I get tachycardia often, usually triggered by eating large meals, sugar or alcohol or bad dreams at night. I also get tachy due to surges of adrnealine when startled or stressed or anxious about something. My breathing gets very irregular some days, like my body forgot how to breathe. My body temp and gut motility gets out of whack a lot too.

Did you pass a TTT? Is that how they ruled out POTS for you?

I was Diagnosed up at Mayo Clinic. My TTT came back normal so they ruled out POTS. I Initiially went to Mayo because I was having Tachycardia (all the time!!) I was put on atenolol and have to play with the dosage to get it to really help. I am unable to get off of the atenolol because my heart rate races out of control. Sometimes I have tachy with it and have to take an extra dose. They said I have innapropriate sinus tachycardia and dysautonomia because of my above mentioned symptoms in my last post. I rarely have low blood pressure. It ranges from 120/70 to 136/70 (with meds). I also get tachycardia with bad dreams, adrenaline surges, excercise (even walking), low body temp, etc...

THANKS for your post and please keep in touch. It really helps my morale.

Diane

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Dianna,

I also have dysautonomia without POTS. I have a lot of the same symtoms as you do.

I was initially diagnosed with POTS but found out that I most likely have NCS and OI. But I'm definitely in that gray area.

I just follow the general guidelines that the POTS peope use. Increased fluid, extra salt etc.. I can't tolerate meds very well so I'm not curretly taking any meds.

I get  tachycardia sometimes from certain foods, alcohol, and medications. And my Hr goes up when I stand but never as high as those with POTS. Mine might go up 30 points sometimes but not all the time.

I am familiar with OI but what is NCS???

I am thinking that I am not tolerating meds very well either but I am on several. Thanks for posting!!!

Do your symptoms wax and wane???

Do you have problems with the summer heat (heat sensitivity???)

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Dianna,

I also have dysautonomia without POTS. I have a lot of the same symtoms as you do.

I was initially diagnosed with POTS but found out that I most likely have NCS and OI. But I'm definitely in that gray area.

I just follow the general guidelines that the POTS peope use. Increased fluid, extra salt etc.. I can't tolerate meds very well so I'm not curretly taking any meds.

I get  tachycardia sometimes from certain foods, alcohol, and medications. And my Hr goes up when I stand but never as high as those with POTS. Mine might go up 30 points sometimes but not all the time.

I am familiar with OI but what is NCS???

I am thinking that I am not tolerating meds very well either but I am on several. Thanks for posting!!!

Do your symptoms wax and wane???

Do you have problems with the summer heat (heat sensitivity???)

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Dianna,

I also have dysautonomia without POTS. I have a lot of the same symtoms as you do.

I was initially diagnosed with POTS but found out that I most likely have NCS and OI. But I'm definitely in that gray area.

I just follow the general guidelines that the POTS peope use. Increased fluid, extra salt etc.. I can't tolerate meds very well so I'm not curretly taking any meds.

I get  tachycardia sometimes from certain foods, alcohol, and medications. And my Hr goes up when I stand but never as high as those with POTS. Mine might go up 30 points sometimes but not all the time.

Gayle-

What symptoms do you experience? How were you diagnosed? Do your symptoms come and go???

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My dysautonomia is MVPS, although I do have occasional struggles with POTS-type symptoms, too. I'm much better now than I was 3 years ago - I was about as close to being bedridden as one can be without actually being stuck in bed. I had horrible intolerance of being upright, but sitting was not as bad as standing. I would always have a head rush/graying out upon standing even from a sitting position. My blood pressure sits about mid-90s over mid- to upper-60s. I feel a whole lot better if at least one leg is somewhat elevated, so I'm thankful that I can prop my feet on my computer at work.

I have experienced all of the same symptoms as you, plus about 20 more that you did not mention. They will still appear and seem to go in spurts, but I've done quite well since early summer or so, with periods of doing well for the previous year or so. The reappearances are generally quite mild and short-lived compared to when all the symptoms acted up at the same time and were very pronounced. I only take 10mg of propranolol on a need basis - otherwise I'm prescription-free and "treat" myself via nutrition. But had you asked me 3 years ago, I would have said I was on a long, slow road to the afterlife rather than a road to recovery!

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Dysautonomia doesn't have to be POTS related, it can be other things or possibly unidentified.

Gena

It's funny that you should mention that your breathing gets strange because I have the same problem somedays.

Gayle

One of the criteria of POTS is if your heart rate goes up 30 bpm. POTS doesn't mean that you have to have any change in blood pressure. Some POTS patients have hypotension, hypertension or both but you can have POTS without any blood pressure changes.

NCS is NeuroCardiogenic Syncope

I personally am very sensitive to medications and yes my symptoms wax and wane. I have sensitivity to heat and cold.

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Dysautonomia doesn't have to be POTS related, it can be other things or possibly unidentified.

Gena

It's funny that you should mention that your breathing gets strange because I have the same problem somedays.

Gayle

One of the criteria of POTS is if your heart rate goes up 30 bpm.  POTS doesn't mean that you have to have any change in blood pressure.  Some POTS patients have hypotension, hypertension or both but you can have POTS without any blood pressure changes.

NCS is NeuroCardiogenic Syncope

I personally am very sensitive to medications and yes my symptoms wax and wane.  I have sensitivity to heat and cold.

Interesting. My heart rate usually towards the evening when my atenolol starts to wear off goes up at least 30bpm or more if I am doing something or upon standing from a crouched position.

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I have such an overlap of symptoms, my doctor just tagged me with orthostatic intolerance. That covers a lot of stuff. I have never fainted, but lately have episodes of lightheadedness. I think a lot of symptoms overlap and lots of us don't have just classic sx of one thing or another. Mayo, and Vanderbilt rejected me and I've already had ablation (which I highly DO NOT reccommend) so Cleveland would be silly for me. So I just deal with my symptoms as they come and go, add on or get a little better. I am very housebound at this point, but plan on discussing mito at my next appt. I am determined to get some kind of real dx before I croak. I haven't seen a neurologist or endocrinologist, but at my last visit we thought, why bother. But maybe psychologically it would help me to have something to explain this cursed problem. Morgan

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I have such an overlap of symptoms, my doctor just tagged me with orthostatic intolerance.  That covers a lot of stuff.  I have never fainted, but lately have episodes of lightheadedness.  I think a lot of symptoms overlap and lots of us don't have just classic sx of one thing or another.  Mayo, and Vanderbilt  rejected me and I've already had ablation (which I highly DO NOT reccommend)  so Cleveland would be silly for me.  So I just deal with my symptoms as they come and go, add on or get a little better.  I am very housebound at this point, but plan on discussing mito at my next appt.  I am determined to get some kind of real dx before I croak.  I haven't seen a neurologist or endocrinologist, but at my last visit we thought, why bother.  But maybe psychologically it would help me to have something to explain this cursed problem.  Morgan

Morgan-

Do you have any other problems besides OI? Also, why did the other 2 hospitals/clinics reject you? Are you on any meds? I am sorry you are house bound. I am too and it really is no fun. Email me anytime.

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