Alexander

CONGRATULATIONS!!!! FEELING HAPPY AND PROVING TO YOURSELF THAT YOU STILL CAN DO A LOT AND STILL HAVE TO OFFER A LOT IS THE BEST MEDICINE FOR ALL SORTS OF HEALTH PROBLEMS. ALL THE BEST!!

Brain fog is probably one of the worst symptoms of PoTS. To me it feels like I am spaced out, living in a different dimension. During the times that it is at its worst, I have slow responses, cannot bring myself to concentrate (VERY FRUSTRATING BECAUSE IT CAN HAVE A DTRIMENTAL IMPACT ON YOUR WORK), and cannot enjoy what I am doing in general. It definitely feels like I have had 4 or 5 glasses of wine. I have told this to a Doctor and he said to me. "That is cool!! You are a lucky man feeling "high" all of the time; and I responded; do you want to trade places??

I do not take any drugs for my PoTS. That is because I am very sensitive to drugs. The doctor has prescribed Florinef, Midodrine and a SSRI. Of these I have tried only the SSRI, but only for a while as I could not handle the side effects. Generally, although I have symptoms that are disturbing, my ligestyle is still rewarding and I can do most things even if that means that I will have to put extra effort compared to "normal" people to achieve them. I thank God that I do not have to take meds, and pray that my health does not deteriorate. Best of luck to all!!

Yes! dizziness in front of the PC or TV or whenever standing still is my primary symptom. And the fact that I am a PhD student who needs to sit sown and read/research in the internetr does not help at all. Of course there are good days and bad ones, but it is always there. I do not know what to do witn this one. Any suggestions beyond the salt/water/drugs alternatives.. Alex

Dear All, I was wondering whether, in additio to POTS, you are having orthostatic hypotension. I am aware that it is believed that these two are separate conditions but I think there is a lot of overlap. Otherwise we wouldn't feel dizzy all the time. I am regularly having a blood pressure around 110-5 over 60-65 but when I stand up and saty still for lets say 5 minutes it can be 90 over 60. Sometimes when I also sit upright my BP is lowerish.. So, how many of you are getting some degree of orthostatic hypotension? Best Alex

Dear All, I was wondering if any of you have any problems with getting enough anaesthesia in the dentist. I went for a filling/root canal the other day and could not proceed because no matter the injections I was just not responding to the local anaesthetic. I have heard that people with EDS III has this problem. Any suggestions???The sure thing is that I am intrerrible pain and cannot postpone the inevitable (doing the root canal) as my teeth is ina mess. I am so frustrated and dont know what to do.. Best Alex

Hi all! I too get regular chest pain, especially when I am upright and active. This is very scary indeed!!! Other times I just get a sharp pain which comes and goes spontaneously for no appartent reason but I have been told that the second type is nothing to worry about. I too had a stress test which was essentially normal a year ago along with an echo (showed MVP) and ECG etc. Alex

Hi there Michelle, Could I ask you what do you mean exactly when you are saying that you can usually prevent a crisis before itr happens. Do you do that pharmacologically (midodrine, florinef etc at the time of sumptoms in addition to the usual dose) or you just eat tones of salt and water to raise your blood pressure (or both?). Also when do you are talking about genetic predisposition do you mean ehlers danlos syndrome? Lastly, may I ask: Have you tried or will you ever try to stay completely off drugs? What do you think will happen if you do that? All the Best Alex

Hi again Michelle, I am reading again your last reply and it got me worried. Do you think that my PoTs might be caused by my bradycardia because this is how I am interpreting your last statement...I am scared about the prospect but I have not investugated this, nor anyone suggested something like that thus far..

Dear Michelle, I am so glad that you are feeling better!!! I am so happy for you plus that it gives me strength to hope tha something similar migt happen to me. It appears that God is rewarding you for helping all of us who suffer from POTS by establishing this Foru, and the Pots Place of course. I wish you full recovery because surely PoTs is something You CAN do without... As regards the pacemaker, NO doctor has ever suggested it to me and I am prying that no doctor will. I was just saying loud some terrifying thoughts. Do you think that I might need one, or I am just a worrier (this time without any cause of concern). All the Best A.

Dear Michelle, Thank you for your response!!I am feeling slighly better than usual the past few weeks. No major improvements though..How about you?? How are you feeling? With regards to the sitting/lying bradycardia, the thing is that I do not take neither have I taken a beta blocker. This is because they make me feel awful!!!It looks like I have the partial dysautonomia rather than the hyperadrenergic kind of POTS. In fact, the only time I have taken a beta blocker was two years ago (one time) and at that point POTS came into my life.. It is no wonder why I hate them!! I would like to know whether my sitting dizziness is attributed to the bradycardia (because definately it is not the tachycardia tha makes me feel dizzy when I sit). Don't you think that a 50 sitting pulse rate is bit strange for a POTS patient who takes no beta blockers..I am afraid again that something really wrong is going on...At times, I don't know whether tachycardia or bradycardia makes me feel worse. One things is for sure. The thought of some doctor suggesting pace maker as treatment is not only petrifying but unwelcome.. But...again, things sometimes have to get worse before they get better. All the Best A

Dear All, The title of my post might surpise some of you (bradycardia) since this is a Postural Tachycardia Syndrome Forum...I shall try to explain. I was diagnosed with POTS by Prof. Mathias in 2002 (England). I get all the nasty symtoms (lightheadidness, orthostatic tachycardia etc). However, (this is the interesting bit), very often my resting heart rate (when I sit or lying down) is 50 or lower (!) at times and I know for a fact that it can go to as low as 38 during sleep (holter). I am writing this email now and my heart rate is 50!!! Who would believe that I have PoTS? Of course when I stand up, or after drinking stimulants like caffeine etc, my heart rate is restored to the usual 130s... I was wondering if any of you had this problem, and whether you could offer any explanations. The thing is that I feel dizzy when I stand up (probably because of the acceleration and the drop in BP), but also (!!!) I feel dizzy when I sit (maybe due to the bradycardia???) Yours views are welcome. All the Best Alex

Hi all, With me the weirdest thing happens. When I firstly get up every morning my heart is on the 80s and 90s range (even when I stand!!!). It is really amazing because every morning I think that PoTs has finally left me. As soon as I eat something or start getting active (whatever is sooner) my heart rate is "restored" to the usual and disturbing 130s and 140s range. And of course my high hops are crashed!! I keep hoping though every single day. PoTs is a mysterious syndrome after all... With Best Wishes to All

Dear All, I am back after a period of major exacerbation with POTS which left me completely unable to funtion properly. Hi Michelle, I wish to ask you something! You have mentioned something about a positive ANS and tat you do not get sick anymore!! I too, have observed that I absolutely CANNOT GET SICK since being diagnosed with POTS!! Where can I get tested for this ANS and what is wrong with exactly??? A second question is whether any of you has found Selective Serotonin Reurtake Inhibitors (i.e. Efexor- anti-depressant) helpful not only for the depression but primarily for the controling symptoms. Some believe that it can help rebalance the autonomic nervous system.. I wish you all the best. See you Alex