Clairefmartin

Just wondering, I hear everyone say that on this site alot. I think I am feeling quite POTSy right now, its making it hard to type. I get very shaky and my heart pounds, I can feel it pounding from my ears to my fingertips and sometimes even down to my toes. Sometimes I am tachy along with it, especially if I lay down at night or stand up suddenly, and every morning. Then there's the lightheadedness and pressure in my head - I feel it in my eyes and all over my head if I stand up or go upstairs, I don't know if that's sinuses or POTS....which by the way I don't officially have. I also feel jittery and anxious too, and for no reason. Its very frustrating. My symptoms have switched over the last few weeks - before when I was working and on my feet for 8+ hours a day I was lightheaded a lot more and I fainted (only once) when standing up suddenly, but it seems to have calmed down since being at home, and now I know how to sit and breath or lay down if i feel like I'm going to pass out. It is annoying because I had such a good day - I went shopping this morning by myself for a few hours and got some crafty things to do at home and some gardening stuff, and spent another few hours outside and felt wonderful. And my garden looks good as a result Then we ate dinner and now I have this whole body bad feeling. Anyways...sorry to vent - it would be great to hear what your defintions of POTSy are - I really have benefited from all your posts since I joined. Thanks!

I think I may look into those filters for my hubby....he probably wouldn't like me saying so though As for me - I get bloated after every meal, but I burp instead. Its rediculous, I sound like a beer guzzling frat boy after I eat, and it lasts for hours! Can you imagine the noises and smells if all of us got together for a meal??

Its great to hear positive med results!! Glad you are feeling better:) Cheers

"Certain Foods, such as dairy products, may increase symptoms in some patients. White sugar and other refined carbohydrates can exacerbate hypotension by causing increased dilation in the gut (Mathias, 2000). It is important to identify and avoid food triggers. Studies show that gluten sensitivity may play a role in neurological disorders (Hadjivassiliou, Gibson, Davies-Jones, Lobo, Stephenson & Milford-Ward, 1996)." Just found the quote! Thought I'd share.

***My favorite gluten free bread sub is called Chebe bread, you can order it online or find it at most health food stores. THey have a pizza/calzone mix and a buscuit mix, its all tapioca based, and is sooooo good! The other great brand I use is rice pasta called Tinkyada, it tastes like regular pasta and is all brown rice based. My husband can't tell the difference. Hope that helps!

I will try and find the quote on carbs and symptoms to post here... Fututrehope I tested negative for all those as well...but still felt horrible both in my tummy and all the other POTS symptoms after eating gluten - it really helped when I stopped. If anyone wants recommendations for great gluten free foods let me know I am an expert by now and swear by them.

Just curious - I just read that POTS symptoms can be triggered by certain processed carbs, and over a year ago I stopped eating all gluten because I thought Celiac disease was causing all my symptoms, including the extreme tachy. I felt so good for about 6 months straight when I stopped eating gluten, still hadminor bouts of symptoms, but I improved dramatically. My doctors told me I had IBS and was not Celiac, but I stayed off it because I feel like crap when I ate flour/oats/wheat/etc... Has anyone else read this or experienced this? I am still technically undiagnosed with POTS - but this seemed to be yet another indicator that I have it. Thanks! And by the way - since joining and posting on this website, I have felt so much more hopeful - and it is great to meet so many nice caring people

I am way worse in the mornings - but I have found that if I lay in bed for a few minutes while awake, then gradually sit up and stay seated in bed for a few more minutes, then evenually get up and walking I feel a little better. Thi has only been possible since I've been on medical leave form work though, and am able to stay in bed till 7:30-8am. While teaching I had to get up at 5:30 and my mornings were horrible! My heart raced all the way into 2nd block. I also crash in the afternoons - 3-7pm I am useless -but I have been that way since I had a spinal fusion 6 years ago, so I don't know if its related.

I have no clue if this will help or not - but I am having similar sleep issues as well. When I am extremely tired or about to fall asleep, I get this shaking/vibrating feeling and it leads usually to a dream that involves falling. Then I jolt awake and my heart is racing and i am short of breath. I never thought that the dreams were related, but I told my doctor after it actually kept me up past 3AM the other night. I had an EEG done and am waiting on the results. And I agree with futurehope, a sleep EEG test may be good for peace of mind. Good luck!

Thanks for all the help - luckily I am off all meds except for as needed Ativan, so my tests should come out as abnormal as they are capable of. I am now scheduled for a local TTT, and set up to go to UVA to see Dr. Phillips who will read the results. Hopefully he will know based on my syptoms what else to test for, there are so many (symptoms and tests!). I think I'm going to apply for Vanderbuilt as well, though I went to their website and wasn't sure if they actually treat you or they just use you for their own tests. Anyways- thanks for the feeback

Thanks for the feedback guys! I will be happy to just know that I am not nuts and there is a name to my symptoms. I think I am lucky in that I still function fairly well, I drive and garden and go out, I just try and take it easy because moving around alot makes me lightheaded. Some days I can;t get out of bed though, so we'll see what happens at the doctors, hopefully they'll be able to make life a little easier and I'll be able to go back to work. By the way Unicornisis - my Mom is driving me, and I didn't even think about elevations issues! Thanks for all the tips, I'll keep you all posted.

Good news - I was just told verbally that I got approved to go down to UVA to see Dr. Phillips who specializes in POTS. I have to get a TTT done here and bring the results down. I am so happy I don't need a lawyer after all !! Yeah !!

About the MVP TTT thing - I was so uneducated about what was going on, I'm not sure what was tested for, I just rememeber he mentioned MVP. I am going to request copies of all my lab work and tests so I can know what was done. I have worn halter monitors and has stress tests, many EKGs, the nuclear testing where they inject dye and watch your heart and arteries, and everyone said my heart is healthy, it just beats fast. The last time I was in the ER they saw that my heart rate jumped around when I stood up or moved, and they said "hmmm, thats interesting." and sent me on my way. They paid more attention to my blood pressure dropping when I sat up, but still told me I was fine and to go home. Luckycharm - thanks for the Vanderbelt info, I am going to send in the app and see wat happens. Did they help you figure out what was wrong and treat you?? On a side note- do you go to the University of Co? My brother goes there:) Once again, thanks everyone for all of the encouraging words, I have felt hopeless and doubtful that there really is anything wrong and that its all anxiety, but in my gut I know its not and I need to just keep moving forward. Thanks!

Hi everyone, I keep reading all of your diagnosis at the bottom of your posts, and I had a question about getting tested for all those things. Did you see one doctor who specialized in dysautonomia, and if so, do you have suggestions as to where I should go? I live in Virginia, but am willing to travel. I am so frustated with the specialists I've seen, and my poor PCP admits he doesn't know what to do with me, so we basically picked the closest doctor from a list of centers for autonomic studies. I am scheduled at UVA with Dr. Phillips, and he has me scheduled for an EMG, but I think I need a TTT instead, or maybe both. I need to get tested for movement related near fainting (I have only blacked out once from standing up, but get lightheaded often), heart rate increases when I stand, GI problems, and these weird tremors and shaking sensations when I get tired or am trying to fall asleep, and a whole bunch of other minor things, like rhaynodes (I spelled that wrong!) in my hands. Just wondering what tests you guys had doen for your diagnosis, and if you had suggestions as to doctors. Thanks!

Thanks Be Still, I do feel POTSy based on what I've been reading on this site. I am thinking of getting a lawyer, and even looking into disability once I get a diagnosis. I don't know how I'm going to work feeling like this. You guys give me hope!

Thanks for the replies - to answer both your questions, I had a tilt table test to see if I had MVP (mitral valve prolapse) almost 4 years ago, and the cardiologist couldn't induce fainting, but he said my heart rate went up, so he perscribed toprol. I don't have MVP, and this was way before I'd heard of POTS or anything like dysautonomia. I was on toprol for 2 years and was miserable - it made my blood pressure drop and I was tired and weak. I finally went off it, and figured out it wasn't doing much anyways, my rapid heart rate has usually been the big issue (until the recent severe lightheadness). I don't think he was looking for anything other than MVP, so I want to have the tilt table test again. My heart rate is way up when I get up in the morning, and it pounds when I lay down at night. I also have been having this weird buzzing/vibration sensation before falling asleep in the last few month, almost like tremors in my upper body and head. It is really uncomfortable...has anyone else had this?? It can last for hours, and jolt me awake, and then my heart is pounding away once again. I ususally take a bunch of ativan to get through it - that's my doctors solution for everything right now! So the only med i take is ativan as needed, which is alot lately, and it doesn't take away my symptoms, but it calms me down. The thing that is so frustrating is that my symptoms keep changing, I'll have the intense heart rate thing for a few months, and then the lightheadedness for the next few months, and then on some days I feel totally fine. While I was teaching, I was on my feet for 8 hours a day and it was ususally very stressfull, and the constant movement seemed to make the lightheadedness and tachy heart stuff way worse. I would have episodes were my vision would start to go (like I was going to pass out) and the room would spin a bit, so I'd sit down with my head between my knees and couldn't sit up or stand of almost an hour. My legs and arms turn this purplish color too...and the my heart rate always went way way up when this happened. Thats what got me wheeled out of class...and then I started having tremors and hot/cold flashing with the rest of the symptoms. It sucked! Anyways....that has recently stopped, I haven't had an "episode" in a few weeks, just the tremors, fatigue, and vibrating sleep thing. Is this normal with POTS? Do symptoms change? Thanks for all your help - it feels good to talk to people who can relate! Forgot to mention luckycharm, I am in the Virginia Beach area, but my family is in the NoVa region. No one in southern VA treats or deals with dysautonomia, UVA was the closest, and Hopkins was where the neurologist suggested. Whats the deal with Vanderbuilt? I have been on their website, but it seemed like they only do clinical studies - do they actually test and treat patients?? Thanks!

Hello everyone, I was wondering if anyone had any suggestions....I have been sick on and off for the last 3-4 years with rapid heart rate, dizziness, major GI issues, near syncope, tingling sensations in my hands and feet, shakiness, etc..... the list goes on. I have seen every specialist around with no results except to treat the heart rate issues, and finally when I went to an ENT he mentioned dysautonomia, and told me I was a text book case. So - I researched it online and think I have POTS, I have every symptom on the list in some form, and I cried when I read it beacuse all these doctors have been telling me I have anxiety and IBS issues and no one has had answers. So I took the printout with my notes on it to my promary care Dr., and he agreed to refer me down to UVA to the autonomic lab there. My insurance denied coverage, and I just had some more testing and saw a new neurologist in order to get approval to go to a lab, and she said she didnt know what was wrong with me, and agreed to refer me to either Hopkins or UVA as long as I would consider the fact that it could all be anxiety related. So - I was wondering if you all think I have POTS or its just anxiety...from my understanding dysautonomia can cause anxiety, but my only anxiety is related to my health!! Otherwise I'm fairly anxiety free. I was wondering if anyone had suggestions with insurance, they are being horrible, and I am stuck at home on upaid leave from my teaching job because I was being wheeled out of the classrrom at least twice a week for the last few months. I know I have a right to treatment, I am on the verge of getting a lawyer. Sorry this is so long - any suggestions woul be much appreciated!! Thanks! Claire