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Tessie,

Ah, you're a fainter, too? Does your BP usually fall quite a bit when you stand and your HR go up? You may also have orthostatic intolerance, and perhaps NMH (neurally mediated hypotension). I can hardly wait to hear what they find out on your tests. You must be from the midwest? I'm originally from Iowa, now in Arizona, yearning to go back to the midwest again!

Jana

Yup that's me! I'm really hoping that they find out some answers...so many doctors haven't. I'm from Nebraska and have friends and a daughter in Iowa..glad to meet you! Hope you can come up this way some time! Will be a 4 hour drive to Omaha to the doctor.

sounds strange...are you on one of those beta blockers known to cause asthma? Just woke up and too sleepy to think of which ones cause this....weird what the sleep place told you..mild sleep apnea...? but that's during sleeping.

I'm not on any beta blockers. The sleep place said that because I only stopped breathing 3 times and not 5 times during testing that I didn't qualify by insurance standards for treatment. I felt that any times of not breathing weren't good and considering that I hardly slept that night because of all the discomfort I wondered how many times I normally stop breathing.

Sounds like reflux to me, have you had a bravo? This a test where they clip a small sensor to your esophagus and track your acid production for 48 hours. You wear a small receiver that records everything. Many don't feel the heartburn that they do have.

I have been treated for reflux before but never been tested ...interesting thought!

I seem to cough for no reason after eating, which is completely knew. I think it is related to dysautonomia symptoms.

I've never noticed if it's related to eating...that's interesting. My coughing doesn't always lead to nausea....it's more then but I always cough most in the morning when I have the most other POTS symptoms.

When you say ,"for no reason", can I take that to mean that your cough has been evaluated by the medical community and nothing has been found as a cause?

By "for no reason" I mean I don't have a cold or phlegm sometimes I might have been around an irritant but most of the time I just cough and don't even know it. My husband says I never really quit coughing but it's definitely more since I've been going off of Zoloft and Klonopin. I also don't always breathe at night. Had a sleep study and they said my nervous system just didn't tell me to breathe all the time but not enough to use a C-PAP or oxygen. This also really concerns my husband.

I'm going off of the medicines I've taken for the past 2 years so that my testing will be more accurate for dysautonomia when I go on the 30th. At the beginning of my more severe problems I was coughing lots in the morning until I'd eventually throw up. The coughing has started again....does this happen to anyone else?

Tessie,

Your BP and HR numbers sound a lot like mine, except supine my HR is always 60 since I have a pacer to keep it from dropping further. I've been to Mayo MN, and it does sound like you're going to get most of the tests they would do at Mayo, at least the tests that they did for me. We're all different, of course, but I think you sound like you'll be in good hands.

Cheers,

Jana

Hi Jana! Thank you for the encouragement! It's been a tough week and my spirits are pretty low so I'm encouraged by your words. Sometimes my HR goes down to 50 or in the 40's. For a very long time the doctors here didn't seem to think anything of it though I asked why it was okay that I passed out and tried to throw up on the treadmill and why my heart monitor test showed over 2 hours of bradychardia and 30 minutes of tachychardia....2 years ago.

They told me it was all anxiety even though I was no longer feeling anxious...just sick. It is definitely a journey and a learning experience! Also have to be more assertive than I've ever been in my life!

Hope you're doing well currently!

Tessie

Tessie, did you check his bio? Many hospitals post them on their find a doc pages. Is he with a teaching hospital or larger metro hospital? Sometimes--but not always, this means you will get better care than a lone doc practicing in a small town who rarely sees any difficult cases.

It sounds like they are doing all the right tests and going in the right direction and not brushing off your concerns and symptoms.

If you are like me, you worry that all the tests will negative--not a bad thing, but it would leave you without a diagnosis and frustrated.

Personally, I say go for it and trust this doctor. After 3 years of trying to find doctors who gave a darn, I am very happy with my docs and finally getting answers. Tests I thought would be negative are giving us answers instead.

HUGS--it is tough going through all this--I have a bunch of tests on Monday, so know you have company in the diagnostic journey. Keeping you in my thoughts,

Becky

Hi Becky! Yes I did check his bio and he is listed on this dinet site of physicians that specialize in dysautonomia. He is in a large metro hospital after working at Mayo Clinic for 2 years with their doctors. The doctors here only thought I had anxiety disorder and even sent me for 2 days 2 years ago to be in a ward with suicidal and homoical patients...it was terrifying! I have a doctor here that believes me now and has helped me get to this specialist.

I do worry that the tests will be negative and I'll be back to people just thinking I'm making this all up. Today I feel tearful because I'm trying to go off the medicines that they need me off of so the tests will be as accurate as possible.

Thank you for the Hugs! I very much hope that all will go well for you on Monday. I hope you keep finding answers!

Tessie

Hi!

I'm scheduled to have an autonomic reflex screening and an EMG on November 30th in Omaha Nebraska with Dr. Pariwat Thaisetthawatkul. I know they will be testing my nerve responses, sweat output, blood pressures and pulse rates, tilt table, breathing and etc. for 2-3 hours. Dr. Thai was at Mayo Clinic for a couple of years and is now working out of the Clarkson Hospital in Omaha. Does this sound like it compares with the tests done at Mayo Clinic?

I've also been keeping records of blood pressure and pulse rate at home. This morning my supine levels were 99/59 with pulse rate 71 and went o 73/56 with pulse rate of 113 upon standing.

I have tremendous thirst--do any of the rest of you have that? Strangely however, I don't sweat much at all.

Thanks for any insight you could give me.

I also have internal tremulousness...sometimes it becomes visible...it started at the same time as my other symptoms and I've never been sure if it's because of the medicines or the dysautonomia. Would love to know if anyone finds out. It is listed on the symptoms for POTS on this site.

Last time I was in the hospital--about 6 weeks ago...they put oxygen on me even though they said my oxygen levels looked fine and I felt so much better..much less faint and more clear with thinking. I was diappointed when they took it off. Wished I could always have access to oxygen when I feel that way. Have found all your insights very interesting!

JJB- I am thankful for your post and wondering what other information you could give me. I just discovered this past year and half that I have POTS and fibromyalgia that were mistaken for anxiety disorder. My 20 year old daugther has struggled since she was 14 with migraines and epilepsy. (Elena...the doctors can tell on the EEG when you would have had a seizure as well as when you really have one...my daughter shows a brain irregularity every 30 seconds). The partial seizures really haven't happend for 3 years (that we know of) although her EEG's are still not clear. She takes Keppra to control them. She has many migraines which are not controlled and other symptoms that seem similar to mine. I have been wondering if there is a connection.

How did you find out what was going on for your daughter? We've been to so many neurologists (perhaps we'll take her to the one I found that works with dysautonomia) and had very little help...especially with the migraines.

Thank you-

Tessie

This is interesting since I know that I have fibromyalgia and but was having problems that we believe are POTS first. Thank you for the information!

I found on this site that Dr. Pariwat Thaisetthawatkul is the only doctor listed as a specialist in my state. He is the doctor I will have my autonomic relex screen and just wondered if anyone else sees him and what I could expect about how he does screens and checkups etc. Thank you-

I'll be going on November 30th for an autonomic reflex screen? Could you tell me what to expect?

Thanks!

I'm in the process of being diagnosed with dysautonomia. We've suspected it for several months and now the tests are down to POTS. I have been taking blood pressures and pulses in different situations for the past few weeks to have a record for the doctors. Most of the readings are classic POTS when rising from lying to standing but I'm curious if any of you ever experience having a high top number but a low bottom number. Example 138/72 pulse 94.

130/74 pulse 83...I have chest pain then and feel faint. In between those reading I had low blood pressure but that's normal for me ex. 102/64.

Thanks for your input! This is all so new to me!

Tessie