the4richards

I've been away for awhile. Feeling pretty good. Just popped in and saw this topic. This was one of my first symptoms and one of the worst. Docs couldn't explain it and said it was just part of my autonomic system that was going haywire. I would gasp for air during the day and wake up gasping at night. Also had the rubber band lightly twinging feeling. I realized I was shallow breathing a lot. So I started doing deep breathing / holding / forcing both in and out with closed, pursed lips. If you try it, it should make noise. There's a post somewhere on the technique. I can't say this was what made the gasping go away, but I strongly feel it helped.

I had no problems with swings. Loved roller coasters. But sick with driving and flying. I once went to a gym that had an elevator. Once we were up (one floor) I grabbed at the wall and asked how they could stand working out there when the floor swayed. Ha...the floor was fine. I haven't been on an elevator since that I don't experience phantom floor movement.

CarrieJessica, Mine weren't like yours, but I had them after my TTT and during my worst flares. Docs said it was normal for dysautonomia. They put ice on the back of my neck...said it calmed the nervous system somehow. It worked, but the whole thing was scarey.

I also had very frequent low grade fevers with no apparent infections. Docs kept wanting to give me antibiotics even though they couldn't find anything but fevers persisted. All stopped when I got POTS a little more under control. More frequent, smaller meals and cut out sugar and "white food".

I am totally off all meds. I still have POTS symptoms. Lately I've been about 70 bpm supine and 125 upright. I can normally deal with it but the heat has been doing a number on me. We've been putting in fence posts the last month and yesterday I couldn't even rake in grass seed without panting and sweating like crazy. My bp and hr went too low on the meds and I prefer being off them and sitting when I have to.

Somehow I missed this topic. This was one of the first symptoms I had prior to POTS diagnosis. I told my doc that I would periodically realize that I needed to take a breath, like my body had forgotten to do it automatically. They kept trying to tie it to sleep apnea but it was during the DAY. I did not have sleep apnea, but I would also wake up needing to breath...similar I guess, but I did not have obstructed breathing...just stopped. Very scarey. Finally with POTS diagnosis, one doc said it probably was POTS related as breathing is part of the automatic nervous system and just about everything it does was wacky in me at the time. This finally went away about the same time as my increased blood pressure symptom (a couple of months from diagnosis, about 4 months in total) For me, lots of good things happened when I started eating more frequent/smaller meals, and cut out sugar and flour(moderately low carb diet).

I had migraines prior and during my first flare. Beta blockers helped everything for me. I finally was able to get off the beta blockers and now I get an occassional migraine, though not as bad as they used to be.

OK...I'm probably not supposed to do this... I'm on a lot of "daily sales" sites and this one popped up today. It seems like a good deal and it's a good thing for us to have... http://1saleaday.com/ It's a wrist heart rate monitor for cheap cheap cheap. It has to be purchased TODAY 4/20 by midnight. Sorry if I violated any rules...feel free to delete...

I noticed about a year before my first flare that any exposed areas to the cold and I get hives. Even in 50+ temps if there is a wind. I've even gotten them when I prepare cut up chicken for dinner, my fingers will be little itchy sausages for a while. I can't even have ice in my drinks. Lovely when you live in Michigan!

Mine was sudden onset with mostly good days. Rama said " Strangely I now realise I had mild Livedo reticulitis on my palms since i was a kid." I didn't know what this was so I googled it. I've had this on my legs since I was a kid and didn't think anything of it, I just avoided shorts a lot! I also had migraines prior to and during my first big attack.

Thanks for all the tips everyone. Kimbellgirl - I guess I was dehydrated...all the excitement and I forgot to drink all my fluids. That definitely helped the tachycardia. The headache is hanging around. Dizzy- I tried a round of rotating tylenol and ibuprofin and the headache laughed at me. So I'm sending the kids off to bed early and trying the "hang your head off the bed" followed by a glass of wine and lights out. On a good note, my son is doing great and doesn't even need pain meds even though he has 3 pins set in his arm!

My son fell and broke his arm Saturday afternoon which worked it's way into emergency surgery at 4am(yeah, that's Easter morning). I stayed awake the ENTIRE night and through the next day. So I was awake from 8am Sat morning till Sunday evening at 9pm. NO SLEEP at all. I tried several times to sleep but I was so worried I just couldn't shut off my brain. I did sleep really well last night for 10 hours, but I have a terrible headache(since yesterday afternoon) that ibuprofin doesn't help and my heart rate is much higher than normal. I can live with the racing heart (as we're all kinda used to that), but this headache is a killer. Any advice? I've tried ibupofin, mild meditation, caffine...I'm hoping if I fix the headache maybe the heart will get back to my normal.

This book excerpt tells a about the anaerobic threshold concept and what happens during the different "phases". http://books.google.com/books?id=BC9SiAsUPqsC&pg=PA258&lpg=PA258&dq=exercise+test+%22metabolic+phase%22&source=bl&ots=8VZKX_iqZp&sig=4wljz4aTtH5FQhUBPWykjXURZIo&hl=en&sa=X&ei=j851T-vkPOOU2wXo8sixDQ&ved=0CHYQ6AEwCQ#v=onepage&q=exercise%20test%20%22metabolic%20phase%22&f=false Textbook of work physiology: physiological bases of exercise, By Per-Olof Åstrand

I had posted about this also. ======= Posted 15 July 2010 - 09:22 AM I've been experiencing some dramatic hair loss lately. I've noticed it for a couple of weeks now. I did some research and have found that this can occur for some of the following reasons: a) 3-4 months following a major illness (my POTS came on suddenly and severely, putting me in the hospital 3 times in March of this year) b.) beta blockers have been responsible (I'm on a low dose atenolol. I started out on 150 a day and am down to 25) c) over doing some vitamins (like A). I haven't been taking any new vitamins. So...I have pretty thick hair and am still fine, but have definitely lost about 1/4-1/3 so far. A couple of people have actually commented (without prompting from me). (a) above usually stops without complete loss. (b.) stops when you stop the drug. =========== I don't know if my loss was from drugs or being sick but I was lucky and was able to stop Atenolol. It has completely grown back. Good luck...

After a lot of research, I insisted on an endo and the glucose tollerance test. I am pre-diabetic. This article http://care.diabetesjournals.org/content/26/5/1553.full#sec-54 explains a lot. Some people cannot handle even pre-diabetic levels of glucose. They get POTS symptoms. I have been lower carbing for 2 years now. It has GREATLY improved my POTS. I still get flares but they're many months inbetween and not very bad, and they only last a day or two. I still have HR swings, but they do not bother me. I also had the OGTT (3 hour sugar test) a couple of times when I was pre-teen. I was normal, but I was having POTS symtoms even then. I keep my carbs to 50-120 ish a day. I do NOT go over 40 per meal. I have cut out all sugar, potatoes, rice and flour. This is a great site if you're interested in lowering carbs and the damage that can occur with higher readings. http://bloodsugar101.com/ I'm not saying this is everyone's problem, and I don't know if it is my problem, but if not, it sure is exacerbating my POTS symptoms.

This started happening about a week before my first flare. When I finally ended up in the hospital they were concentrating on my super high bp and hr and totally dismissed the breathing. They said I was just just "anxious". Give me a break. I didn't have anything to be nervous about BEFORE my first flare. Good news is, it's been 2 years since then and I haven't had the breathing issues since.

I get severe midmonth abdomen pain. This lasts 6 days and has been going on EVERY month for 8 years. Docs know it's hormonal, but it's inflaming my bladder. I NEVER put two and two together before...I just though my POTS symptoms got better midmonth....but I do NOT have POTS symptoms when I have the abdominal pain. Now I have to wonder if the inflamation is somehow stopping the POTS symptoms? Weird.

I've had quite high BP with flares (180/110). At first it would stay high for hours, now it lasts about 10 minutes and comes down. I definitely get anxiety with it. I feel the rush and know I have to lay down immediately. Sometimes a little xanax just to quiet the shakes.

dani, I was not prone to anxiety prior to POTS. However, that was my worst symptom. I would have it sometimes during an attack, sometimes when I was "normal" and just sitting there doing nothing. I resisted about 3 months and finally took 1/2 a xanax. What a difference. I kicked myself for not doing it earlier. I was prescribed 15 pills and now, 1 1/2 years later I still have 3 left, so I am NOT abusing them. I found that when I was really strung I could take 1/4 and get passed the bad time until my hr and bp settled to "normal". I didn't need it often as I was gradually getting better as my body adjusted to changes I was making. SO...I think anxiety is a symptom. There are LOTS of alternatives to deal with it. Xanax is an option but not one I would have used if I had to use it often as it can be addictive. But thank God it was there! Donna

Chrissy, This happened to me after my TTT. As soon as I started shaking they dumped ice all over me. The bed is slightly concave so they were able to really pack it around me, especially the back of my neck. They suggested ice packs at the back of my neck if I got tremors later...which I did and it helped.

sue1234, I had my sugar levels checked many times in the ER and during my stays there. They hovered around 106 fasting, which is pre-diabetic range. I never had a high reading there (although I was nauseous and couldn't eat) and I have NEVER had a low, although I got hypo "symptoms" regularly when I didn't eat. I insisted on a 3 hr. glucose tolerance test. My 2 hour was 190 (diabetes is 200+, pre is 140-199, normal is 140 and under). Once I got my sugars under tighter control, my bp went from being high to low. Now it ranges from 110/70 sitting to 90/70 standing. After about 10 minutes the standing bp will bring itself back to normal. lieze, Diet definitely helped me. I cut out all sugars, starches and anything white (rice, bread, potatoes). At first when I didn't eat every 2 hours I got hypo symptoms but testing showed sugars were normal. I am still eating 50-120 carbs a day, which is by no means a super low carb diet. I can now eat up to 40 carbs a meal and keep my sugars where I want them.

This is for the newbies looking for answers...and hope. My story In early March of 2010 I had the following symptoms that had me calling 911: blurred vision, pain in my left arm, dizziness, nausea, migraine, sweating, blood pressure about 195/110, hr 185 when standing, near syncope. After 3 trips to the ER, with initial prognosis of TIA(mini-stroke), NCS, and finally POTS, I was put on high dose of beta blocker with a side of Zanax when needed. I had severe anxiety and shakes which I had NEVER had before. Final diagnosis NCS(positive TTT) and POTS, negative TIA - my heart is strong. A couple of other things that had recently popped up was I had cold urticaria (hives if I was exposed to cold), and my sugar levels were a little high (in the pre-diabetes stage). I had to drastically change my eating habits because of the nausea. I ended up eating frequent small meals on a lower carb diet. I lost 25+ lbs and my sugar levels were now normal (I had access to a glucose meter). I am now on about 5 mg bb (atenalol) 2x a day, I no longer have ANY disabaling symptoms. The only thing I do have is a 15-30 pt swing in my hr when standing, but it is managable because my supine hr is 55. I can do anything I could do before. My cardiologist is going to start taking me off the bb. The doctors don't know what caused my symptoms...a virus I had a couple of weeks before maybe? A reaction to the cholesterol meds I recently started taking? I STRONGLY believe it was diabetes related. My sugar levels made me sensitive to EVERYTHING. Once I got those in control (and they were never diabetic levels) everything else started to get better. This web site http://care.diabetesjournals.org/content/26/5/1553.full#sec-54 gave me insite that diabetes can cause the cardiovascular, metabolic and sudomotor problems I was having. You do NOT have to be full blown diabetic. Some people's bodies just can't handle the high sugar levels and react like they've had untreated diabetes for years. So bottom line...if you suspect diabetes at all...even pre-diabetes...cutting carbs could be a miracle for you. FYI...I almost didn't post this because I know the majority of you on this site will have your condition forever. I do not in ANY way want to belittle your pain and struggling to have a quality life. I was just one of the unlucky lucky ones to have the condition that went away (and I pray stays away) and hope I might be able to help at least one person in a similar situation. God Bless You All and may His healing hands rest upon you. Looking4Answers

Hello all. I've been doing very well lately. So well that the docs want to pull me off my bb. I still have a hr swing, but it's not terrible and well tolerated. On to my little test... I forgot to refill my statin (40 mg simvistatin/Zocor) and went without for a week. I noticed that my blood glucose was doing terrific during this time (it's been hovering on pre-diabetic). I finally got the refill and took 1/2 a dose. Several hours later, my glucose was up and I was sweating bullets. I couldn't get my bp to register on my home unit and checked my hr...it shot from 50 sitting to 140 standing. I haven't had this for months. Needless to say, I stayed sitting the majority of that evening. I did not take the statin the next day and everything is about back to normal. Hmmmmm...anyone else take a statin? Have you noticed this? I don't know how long it takes meds to clear from your system. I just had cholesterol bloodwork done and I don't know if 7 days off meds would get me a statin free number or if it is still lingering in my body. My numbers were decent and I really don't want to start taking them again if it's going to effect me this way. Any advice or words of wisdom?

OK...so I just did more searches and found this has been posted lots of times. (I must have mispelled my first search...oops). It looks like a lot of us experience this...and I don't think anyone is actually bald yet because of it!

I've been experiencing some dramatic hair loss lately. I've noticed it for a couple of weeks now. I did some research and have found that this can occur for some of the following reasons: a) 3-4 months following a major illness (my POTS came on suddenly and severely, putting me in the hospital 3 times in March of this year) b.) beta blockers have been responsible (I'm on a low dose atenolol. I started out on 150 a day and am down to 25) c) over doing some vitamins (like A). I haven't been taking any new vitamins. So...I have pretty thick hair and am still fine, but have definitely lost about 1/4-1/3 so far. A couple of people have actually commented (without prompting from me). (a) above usually stops without complete loss. (b.) stops when you stop the drug. I have been doing EXTREMELY well on atenolol. I consider myself normal (just minor occassional dizziness). I hate to switch drugs at this point. Has anyone else experienced this? What did you do? Did it go away? Thanks.