avidita

Hi Nikki, Dizziness has been my major symptom. It is worst sitting, sometimes lying down, never standing. I, too, had full ENT workup (several times). Too many tests to list here - all normal, except for a VEMP test (Vestibular Evoked Myogenic Potentials). It tests a part of the inner year that other tests can't so it is the only one that can show if something is wrong there or not. It's more of a functional than organic thing, but still. I would ask your ENT to do it, maybe there will be something there. Let us know how it goes for you. M. PS. I actually need to correct that. If I get a migraine (mine are vestibular migraines - vertigo, no pain) I am dizzy when standing up and better when lying down. But those are episodic, have had them forever, and have nothing to do with my everyday POTS symptoms or dizziness.

I actually competed in Physics Olympics in HS in Eastern Europe (read college level physics at the US level) and then took advanced Physics classes for fun in college in the US. So this is quite amusing Since I am of the persuasion that dysautonomia is not a vaccine against anxiety and its physical manifestations, I want to take issue with having to have my head examined . The same way that all my relatives right now are wrong about having all my symptoms come from anxiety and pretty much ignoring my POTS diagnosis as "nothing to worry about" or "nothing that my possibly cause the symptoms I am experiencing", the opposite is also true. Dysautonomia does not make one immune from anxiety. I could be wrong. I will be interested to hear how exactly does POTS make anxiety absolutely impossible for me, then maybe I will have more arguing points against my family . I don't think Xanax and Atarax- like pills are supposed to make one functional all on their own in a bad POTS flareup the way the are doing for me. My pseudointellectiual comment referred to my particular situation btw and I am not saying it applies to other people, just food for thought. Thnx.

Hmmm. They didn't do anything other than the TTT in the ANS lab, but the doctor insisted that based on my readings there is no way I have hyperadrenergic POTS. How much did your BP spike exactly? Do you remember? Was that during the TTT?

My otoneurologist gave me a written test about such symptoms yesterday. She explained that those are very common with vestibular disorders, but also with anxiety. I know I have anxiety in addition to my medical issues (it's only natural when your body refuses to work properly) and no particular vestibular disorder so my sensations are caused by it. Yours might be, too. I do have POTS, but I think a lot of my symptoms are also caused and/or made worse by my anxiety. Sometimes it's hard to differentiate, but one shouldn't just file everything that goes wrong under POTS. Anxiety is very common in dysautonomia patients and addressing it is important and beneficial. I would look into that if I were you, because the questionnaire was a real eye opener for me b/c it described a lot of my disconnected/in a dream feeling perfectly. Hope that helps, M.

Hi all: I hope your holidays were fine! I am still overseas getting tested . The doctors here are not quite familiar with the tests for hyperadrenergic POTS in particular, so I was wondering, if anyone has been diagnosed with it and how exactly. I know they take the catacholomines (spelling?) lying, sitting and standing, but what is the procedure exactly. How long to you stay in each position before they take blood, etc.? What other tests do they have for it? My doctors will do any tests I want, but I'll have to tell them how to perform it exactly, so I can use the results later... Anyone who has experience with hyperadrenergic POTS and its diagnosis in particular will be appreciated Thanks all and I hope you have a wonderful and symptom-free weekend! M. In case anyone is curious about my tests so far: EMG - normal TTT - potsy, but surprisingly better than the beginning of the year (my pulse jump was only borderlining, like 35 beasts more than supine; actually my pulse has been normal for the past few days for some reason, like 100 walking, 65 sitting, 50 laying down, dunno why, still symptomatic...) Very extensive blood work: mostly normal, but with low Magnesium Level, very high B12 levels (I do take supplements), and the real kicker - confirmed allergy to soy, rye and gluten and nut intolerances, which is great news for me, because that is literally ALL I eat (soy burger with bread for breakfast, soy shake for lunch, etc.), so if I modify my diet, I'm hoping for improvement ; no Lupus; Lyme's decease still not ready; Differential blood work a little off, but that will be discussed with my docs later; thyroid OK; sex hormones OK; Slightly high Chlorine in blood, which may mean dehydration; I'm sure I'm missing something, cause it's 3 pages of fine print test results, but they are fine ENT workup - normal with the usual slight deviation in my VEMP test, which is very minor and should not be affecting me much according to the doctors EKG - normal Coming up next week: Holter Monitor, heart echo ( I have a tricuspid valve prolapse, just need to get a picture of it) and endocrinology tests (catacholomines in particular)

My family is sending me. I don't really have any problems with long flights, just pop some Xanax and/or motion sickness drug and I'm peachy. Even back in Feb, when I was arguably worse than now, I handled the flight just fine. The reason I am going, is b/c US doctors require A LOT of wait time before appointments, do not spend time with you and are very expensive for someone without insurance. I have many specialists there on my fingertips (albeit no good POTS ones - small country/rare condition kind of thing). At the very list the blood work I need to have done costs $1600 in the US and about $150 in my country. That alone is worth the trip. Strange thing in my case is that I am diagnosed with POTS, but the symptoms I'm experiencing (constant dizziness, nausea, tremors, etc.) don't really have much to do with my standing up or working out or doing anything that would make a POTS patient worse. Like today, I was horrible in the morning, very dizzy sitting/lying down. So I drank an anti-anxiety tea and drove to the mall and shopped/stood in line, the works and felt BETTER than when sitting/lying at home. Not good, but much better.

Hi again B/c my health has taken a very bad turn, so I am being shipped to Europe to do testing (and possibly go on anti-depressants) while awaiting an appointment in Mayo in March. There is a doctor in Mayo that specializes in my type of symptoms (the constant relentless dizziness type) and he has agreed to see me and have other people take a look at me, too. I will use my time in Europe to do as many diagnostic tests as possible (b/c they are cheaper there), so the Drs in Mayo will have an easier time with my Dx. My question is this, what would you suggest I get tested and what tests should I do? (I am making a list: Lymes, holter monitor, Lupus, etc.) Below is a list of some of my most common and/or recent symptoms in case they give some ideas. I haven't had any POTS related tests other than the TTT, so maybe those with more experience will have ideas (like how do you test low flow POTS or your norepinephrine levels... anything relevant really) - constant dizziness - especially when sitting or lying on back (had ENT workup already) - arrhythmia upon lying down (esp. when lying on left side) - akathisia - I came across recently and it perfectly describes how I feel most of the time - nausea (sometimes) - tremors (I don't know if this is anxiety related or not) - strange sensations as if zooming in and out when trying to fall asleep - feeling of floating when lying down Thanks in advance! M.

That is so AWESOME! I hope you stay well. Your story has given me hope in a very difficult time for me I thank you for that!!!!!!

I have some reading issues but they are not similar to yours. Since before my POTS started I've gotten vestibular migraines (bad dizziness/sometimes vertigo and nausea) from reading for prolonged periods of time. It used to be mostly around tests where I would study for 6-7 hours straight. But since POTS it can take me only 20 minutes to go from fine to very dizzy from reading. It seems to happen when I am sitting, so I try to read lying down.... The weird thing is that sometimes I can devour a 800 page book in 24 hours (reading non stop through the day and night) if it is interesting to me (like the Harry Potter installments, LOL) and sometimes I will get dizzy before I finish an article in a magazine.... so mine may or may not be some type of anxiety....

Hi: I was put on Topamax back when my symptoms first started for what they thought was a cyclical migraine I couldn't get out of. I tried the baby dose and it was dreadful for me. However, they had me start it at the same time as Effexor XR and I am not sure if it was the Topamax or the Effexor or the combination of both that did the trick. Also, I had the reaction the first night I was taking it - woke up feeling like someone is puring hot water into my skull and I was dying. So if you are able to tolerate it for as long as you have, it might be better for you than it was for me. Metal feeling in the mouth is a normal side effect, especially if you drink soda, etc. It normally leads to weight loss, but it's nothing to be concerned over. The migraine, however,is a different story. I would def speak to the doctor about that. Hope that was helpful. M.

Thank you SO much for the responses! I am glad to hear that people have managed to get improve their dizziness! Yogini, I have not tried ANY POTS medications yet. I tried salt loading some months back, but only made me feel terrible. Atarax or Xanax take most of my symptoms away. Problem is that they are not for long term use. I am very hopeful that once we try to treat POTS pharmacologically, there will some medication that will give me a similar relief. Anti-depressants maybe. Thanks again!

Hello everyone: I am sorry to post a new question so soon, but I am really desperate right now. My major symptom of POTS is dizziness. When my symptoms first started in Dec of '06, I couldn't get out of bed, felt extremely dizzy and nauseous, but after stopping Yaz and taking 1/2 of the .25 Xanax 2-3 times a day I improved over a few months and although I wasn't feeling super, I was pretty functioning with the occasional bad dizziness/nausea, which Xanax and sleep pretty much took care of. Fast forward to Dec '08 when I got my molars extracted and the same constant dizziness came back, it improved a little over time, but I was put on Atarax in July, b/c the dizziness/nausea got severe again. Atarax works fine, but it's not a long-term solution. I was only taking 1/2 of the 25mg twice a day, so I decided to stop it and the dizziness/nausea came back big time (like back when my symptoms started), it only mildly improves when I lay down and it's really bad when I sit down. Standing and walking doesn't make it worse, but it so bad to begin with that I can't stand up much anyway. I am honestly at my wits end and I feel I am never going to get better. I was optimistic until last Dec, but now I really don't see the light at the end of the tunnel. So, here is my question. I did a search about the constant dizziness symptom and came across some posts of people who have gotten better. Can please anyone who has gone through what I'm going through and has improved post a reply to my posts and let me know what has worked for them. I really need to hear from people who have improved to a functional level (I'm defining a functional level with something as little as holding a part-time job and having a family - that is a dream). I know people get worse, etc. and that is scaring me A LOT, so I want to hear from those who have gotten better. PLEASE. History, if interested: Dx POTS Feb '09 tilt table test Normal tests: complete ENT workup (except for a VEMP test, which ENT doctors are telling me doesn't explain my kind of dizziness, plus the ENT medication didn't improve me, so I tend to believe them); MRI; Tyroid; EKG; and some others I cant remember Abnormal tests: TTT, minor Tricuspid valve prolapse Current meds: 1/2 of 25 mg Atarax 2x day; Past meds: Tried Topamax, Effexor, Lexapro in 2007 - didn't work. Nothing for POTS.

Anywhere from 54-65 when lying down. 70-89 when sitting down. Btw when I feel the worst when my heart rate is low (regardless of whether or not I've had prior HR spikes)...Neuro won't consider BB for me with my already low resting HR.

No. I've always had Ds when I am above 120lbs (5'7") and a Cs when I am around 115lbs. I haven't noticed a connection between breast size and POTS (and I've been through some pretty wild ups and downs) nor have I noticed a connection between my hormones and my breast size (my period went from coming every 26 days like clockwork to coming every 19, 22, even 36 days since last May). I have, however, noticed a connection between what I eat and my breast size. A diet higher in carbs seems to affect my cup size A LOT. Like last winter I couldn't work out and ate more carbs, so I gained about 10 pounds (from 115 to about 125) and instead of getting Ds I barely fit into a DD. It's weird.... So anywho, check you diet

I sent him an email in the beginning of this year when I was feeling pretty bad and had the intention to fly to England to see him ( I was in Europe at the time). I sent him a Word file with my symptoms and history and he sent me a very detailed email that he did not feel I had POTS, but rather just low blood pressure and some suggestions on how to deal with that. So, I didn't go to see him at the end. However, it was nice of him to take the time and go through my Word file and send me a long email back with his opinion. I don't think any doctor in the US would do something like that. If you can go and see him - do. From my experience I think he will give you the time of day. Hope that helps, M.

If the autoimmune issue is under control I can't see why nerve rehabilitation would not be possible. Neuro research all points to our bodies being able to heal. Until recently they thought the brain had a finite number of cells to go on and now they know that is wrong and there are stem cells even in the brains of older individuals. Not to mention people who recover from bad strokes and accidents and their brains completely rewire themselves in oder to regain functionality. So yeah, I think it is possible for nerves to "heal"...

Thanks Intuit! That was helpful! I absolutely agree with you that managing stress is very important along with building up fitness. I am taking some of things you said to mean that you have managed to improve your symptoms. That makes me optimistic!

Yep. In the beginning of this year I had the strangest thing with my hands. "can't tell my hands what they want them to do" would be the perfect way to describe it. It happened when I was trying to flip a spoon in my hand and my fingers just wouldn't go in the right direction, or when I tried to eat chips or operate a fork...anything that required a little more precision and coordination on my fingers' part. The doc's thought it was MS and did an MRI, but no Then they did an XR of my neck and found that it doesn't have the natural curve to it, but is flattened, so hey said it probably pinches a nerve or whatever and it somehow affects my hand movements. I didn't buy that, but it kinda went away after a few weeks....

That's very close to me! Would you mind sending me his contact as a message and how much he charges? I would really appreciate it! Thanks, Margarita

Hi Maggie, I am in Tampa and was wondering which doctor you were seeing in Florida. I see doctor Zia all the way in KY, because I don't have insurance right now and he has very reasonable rates for people without insurance. Do you have a general practitioner who knows about POTS? Thanks, Margarita

Or, more likely, the mechanisms of POTS themselves result in anxiety - the sympathetic nervous system is the flight or fight mechanism and its been demonstrated to be overactive in response to orthostatic stress. Secondly, one of the chief mechanisms of POTS is possibly the impaired reuptake of norepinephrine which results in this stress hormone moving and collecting in plasma and activating beta receptors = anxiety like symptoms. Third, when circulation to the brain becomes disordered sometimes the body releases tonnes of epinephrine to attempt to re-regulate circulatory control. It doesnt work but by god it makes you anxious. Fourth, the brains of most POTs patients were found to have high levels of lactate - a result of reduced glucose metabolism due to hypoxia. Lactate levels have been connected with anxiety. Five, a portion of POTS patients were found by Stewart et al to have significant postural hypocapnia - which also results in anxiety as a symptom. Anxety and POTS go hand in hand because anxiety is an obvious result of many of POTS mechanisms. I guess it is individualized. Whether or not it's POTS that is plaguing me, I know I have anxiety as well. I have a cognitive behavioral book that I am working myself through and I have every major type of wrong thinking, etc. So, I am sure that if I a manage to minimize that aspect of my anxiety (the one that is non-POTS related, but rather stems from my thinking patterns), I think it will make a dent in my symptoms. Just because my POTS is activating the anxiety mechanisms in my brain, doesn't mean I am not exaggerating that problem with my thinking patterns. That is my personal opinion for myself at least. Other people are different It helps me to think that there is something in this that is under my control somehow and not just lay back and play victim (which I am not saying anyone does, but I know I am making my anxiety worse with my thinking patterns, so I am not going to ignore that).

I voted 2 years. My symptoms began abruptly and severely in Dec, 06. By Feb, 07 I was already getting better after weeks of being bed-bound and since no one could find anything wrong, it was dismissed as anxiety. I was content with that and for the next two years took Xanax on occasion and was steadily improving....until I got my molars extracted in Dec, 08. Then I got really crappy and pushed for a diagnosis other than the anxiety. Finally in Feb '09 I went to Europe to do tests and had to literally beg a dysautonomia specialist in Bulgaria (my home country) to give me a TTT. He laughed and told me to see a psychiatrist, but that he would give me the TTT anyway because he had some med students with him and it would be interesting for them to see what a TTT was. 2 minutes after the TTT started and my pulse doubled, he wasn't laughing anymore and was lecturing his students on what POTS is. I would have pushed for a TTT earlier than 2 years if it hadn't been that I was improving prior to the molar extraction.

Hi Daisy, I do get those push/pull sensations and I hate them. I came across a study recently for people with unexplained generalized dizziness and the participants were found to fall into these categories: dysautonomia (duh!), physical trauma to the head, anemia, anxiety or arrhythmia. The dysautonomia aside, I do believe that anxiety alone can cause that type of dizziness and given that the POTS diagnosis is making me extremely anxious all the time, I am not counting it out as part of the problem. Who said one cannot have POTS and Anxiety? The last ENT specialist I went to was very good and explained the mechanism to me like this: lets say that you have a minor flaw in your vestibular system (in my case the way it processes certain information), that causes you to get dizzy sometimes, which in turn makes you anxious. The part of the brain that is responsible for anxiousness and dizziness overlap, so one makes the other worse. If you can put numbers to it, say the vestibular problem alone is a "1" and the anxiety is a "1" as well, but together, they don't make a "2" but rather, they magnify each other and you get a "4". By the way, I am not a doctor, but I disagree with your neurologist somewhat. If your vestibular system was not functioning properly that would have shown on a test somehow. Did they do a VEMP test on you? That was the one that was abnormal for me. Margarita

@ramakentesh: I didn't have any expectations about the answers. Like I said, my doctors and I are at a loss at this point. However, my husband, family, and all but 2 doctors think I have anxiety and the fact that I am able to exercise is proof enough for that. They think that since I have dizziness to a point where I can't work and feel bad most of the time, it would be unthinkable for me to do a hike and have POTS at the same time. I just wanted to check if there is anything to that. I was hoping that there is a chance they could be right, given that I get worse from exerting myself mentally WAY MORE than when I exert myself physically. @Tachy Phlegming: I am thankful to anyone who offers advice or an opinion about what possibly could be going wrong with me. I always get motion sick and if I don't drive myself, I get sick within 10-15 minutes and traveling does not make the dizziness better by a long shot. I am usually very medicated and sleep the whole way. Other than that, when the dizziness progresses when I read or when I study, etc. and then it's full blown vertigo with me spinning, etc. The website mentioned that this disorder is not associated with vertigo and my dizziness goes into vertigo mode when I am migrainating (that's what I call it ). @Amy: I don't take offence with you at all. I am sick of being told I am causing this to myself and I need to stop digging for answers and get therapy or go on antidepressants. Like I explained to ramakentesh, to say the people around me don't think I have POTS will be an understatement . Thanks again to everyone who answered!

I am sorry you are feeling anxious about your new diagnosis. I've read some on the connection between POTS and Celiac Disease and from what I understand it can actually cause POTS symptoms. In other words, if you take care of the Celiac Disease through diet modification, etc. it may improve your POTS symptoms significantly. Which would be something to look forward to. I hope that is the case with you!