Deb

I'm a week late, but I hope you had a really great Birthday. Reading your posts always lightens my heart. You're a truly warm, caring and loving person. I hope you stay in remission. My thoughts are with you.

Hi Morgan, I'm glad you've come back, and with such great news! You've experience what most only dream about! There are a lot of caring doctors out there, but to have one stick up for you in that way, WOW!

I can't believe some of you have those twitches!!!!!! I remember first noticing it in my eyes. I twitched, trembled, and actually shook so much that I had a hard time walking and started falling a lot. I was tested for epilepsy, but when that came back negative, my neurologist just basically shrugged it off. Believe it or not, my Primary Care Physician determined that it was the SSRIs that were doing it to me. It's a very rare side effect of SSRIs, but as most of you have found out, if there's a side effect of a medication, than POTS sufferers will have it! Ha Ha. Looking back, I think that some of the twitches and trembling actually was part of having POTS because I had them before I started Paxil and after being off of it for four years, I still have them occasionally. I've gotten so used to them that I mostly don't even pay attention to them now.

Yes, I am completely off the meds. Like you, I also have asthma and other allergies and eczema, so I have to take preventive medications. I started having anxiety attacks because of or along with the POTS, and I still get them. I use Lorazapam only when I feel one coming on. Thankfully they are very infrequent now. I think the meds were a real life-saver for me. I couldn't get myself to the bathroom alone before I started on the midodrine and florinef. They were like magic. Don't get me wrong, I felt bad most of the time, but I had some good days, too, and I was able to go back to work. I was sick for about two years. I hope your own health is improving.

When I read your posting, I almost cried. It brought back so many memories from when I was trying to find out what was wrong me. I wish I could slap your sisters for their attitudes! I relied a lot on my husband's support. He's a fishing guide and knows lots of doctors (they all seem to like to fish) and he was able to pull in a favor with someone who knew the head of the Neurology department. It was at Christmas and no one was going to be able to do the TTT for weeks. Fortunately I had the test on Jan 30th and was able to start medications the next day. So, my advice to you is to do some research into locating a doctor in your area and then find someone who knows someone who can get you in for an appointment. Make a list of your symptoms and take it with you. I was also diagnosed with pure autonomic failure before it was narrowed down to POTS by the TTT. I'll be thinking of you. Good luck.

Since I'm now recovered from POTS, I can look at my symptoms, etc, a little more objectively than I could when I was feeling so bad. I can honestly say that if I hadn't been on the Florinef, I would not have been able to do anything. The side effects were way more desireable than the symptoms. My doctors tell me that it is extremely unlikely that I will have POTS again, but if I did, I would not hesitate to take the Florinef again. Like Meg said, if it's the only thing that works, then use it. Just try to eat as healthily as you can, and NEVER let yourself get dehydrated.

I, too, find this topic fascinating. I started having anxiety attacks AFTER the POTS symptoms started but before I was diagnosed with POTS. I am such a laid back type person that I fought the doctors about having anxiety because in the beginning the doctors in the ER were trying to blame my POTS symptoms totally on anxiety. Sound familiar? With all the POTS symptoms it was hard to sort out which symptoms were from POTS, which were from the anxiety, and which were the side-effects from the medications! I have never found a real connection with stress and my attacks. I know that stress can trigger them, but I think there is so much more that isn't known about anxiety. I saw a therapist for awhile, but none of the techniques worked for me. I have gotten to where I recognize the symptoms, but I still cannot stop them or even relieve them on my own. Anyway, I agreed to try Paxil and then Zoloft but neither one helped me deal with the anxiety. I had so many horrible side-effects that I couldn't function. What finally did work for me is Lorazapam (generic of Atavan). I always have a couple with me, and when I start feeling the symptoms, I pop one and I feel better within minutes. Fortunately the attacks are not very frequent anymore.

I hope your appointment with the gastro went well. Your pain sounds like what I had when I was having my worst POTS symptoms. I was terribly distended and couldn't eat. I felt like a knife was stabbing into me. It was hard to even breathe normally. I was also put on Levisin like Mandasmom to relieve the spasms. It really did help, and I only had to take it when I was having symptoms, not everyday. I sure hope you have good news.

To Nadine, Despite the side effects, Florinef helped me a lot. I also drank several quarts of water and added salt to some of it every day. That combination seemed to keep me hydrated. I forget the name of the drug I was on, but it kept my BP elevated so I could function. I would faint or nearly faint every time I stood up when I was at my worst. So, that really helped, too. I paced myself so that I wouldn't get overly tired. That was hard, because I love to be outside but I tired so easily I couldn't do more than walk for a few minutes on the days I worked. Resting between periods of activity (laundry, dishes, etc) really helped. I also hired a girl to do the heavy cleaning every other week for me. It was worth the cost. I also realized I didn't have to have a spotless house. That was a great lesson.

In answer to dsdmom about autonomic neuropathy, yes, I did suffer from it. I had periods of freezing or burning up, I had irritable bowel syndrome, I had trouble swallowing, I lost a LOT of weight because I could only eat a few bites before I felt full. They were the most troublesome problems. All of those finally went away. The only neuropathy I still have is a slight numbness in my little fingers, mostly my right one.

It's been over two years since I wrote on this forum. I learned so much here and more than anything else, it helped me to get through the bad times. After many months of feeling tired, losing weight, fainting spells, hospital visits, lost time at work, etc, I was diagnosed in Dec of 2003 with POTS at the University of VA Medical Center where I also worked. I had the strongest reaction on the Tilt Table Test of anyone tested there, and I still hold that title. My illness was caused by a virus that attacked my nervous system. I consider myself one of the lucky ones because even though it took a while, but my nervous system finally healed, and I am mostly as healthy as I was before POTS. I remember reading here that the people who recover don't write anymore. For the most part, I suppose that's true. I DID recover, and I did stop writing. In my defense, though, we had a reorganization at work and then my husband and I moved. They don't actually sound like very good excuses, so they? I still have an occasional anxiety attack, but I've learned to deal with them, and only need a Lorazapam tablet about once a month. I still haven't found another job since we moved, but life is slower here in the country and it's been good for me, especially with my son now married and a baby granddaughter, too!

I've had that just about all my life. For me it's oversensitivity/eczema. Taking a cool bath with bath oil helps A LOT!!! Also, and this sounds gross but really works, spread on a thin layer of Vasaline on the area that acts up. I keep a container by my bed. The Vaseline brand works the best because it is easier to spread. If you don't want to or can't take a bath, then take a cool shower and spread with the Vasoline as soon as you pat yourself dry. I used hydrocortisone creams for years, actually decades, and it now doesn't do a thing for me. I hope this helps! Oh, it can also be a sign that you need more fluids. I can always tell when my lips start to get dry!

Even though I don't have most of my POTS symptoms any longer, I still get the numbness in my toes and fingers. The Neuro that diagnosed me said that I probably had a virus that damaged my peripheral nerves but they may heal in time. It's always worse when I've overdone and worn myself out. I've been canning tomatoes, that would wear anyone out! The only thing that now seems to help the numbness is to get enough sleep. If I pace myself better, then I go for days without any numbness. Sue, I've never had as much numbness as you've described, but when it was the worse, it went down my right side from my right ear to my big toe. Have you gotten you gotten the results back from your tests?

I've read about theophylline. It wasn't an option for me because I have asthma, and there are much better medications for asthma now. It would have been a bad trade-off. I am very happy for you that it's working so well. You're the first one I've heard of that's taking theophylline for tachycardia. Keep up the good progress!

I can vouch for all of the advice given above. Florinef got my kidneys back on track with the help of a lot of salt and water that I was unable to do with water and salt alone. But, it also gave me headaches. The longer I was on it, the worse I felt. I got to where I had a headache almost non-stop and chest pressure that felt like a tight band around my chest. As for weaning off of it, I was told to take half of the pill for three days, and then stop completely. I would not recommend that to anyone. Wean off of it much more slowly. I had horrible side-effects that included huge swings in BP, additional anxiety, and fatigue. If you are worried about the side effects, then start out with just half of one of those little pills. If after a week or so it seems to help, then maybe that's all you'll need. You should be able to tell if it's working, because you'll start to feel a good deal better. From my own experience, I believe Doctors tend to over-medicate. I was taking so many pills that it was hard to tell the symptoms from the side effects!

You sound like you need a little encouraging! I may be recovered from POTS!!!!! It's too early to tell positively, but my POTS symptoms are gone. My PCP thinks I may have gotten low blood volume from medications I was on that led to the POTS. All of those symptoms were exacerbated even further by the Zoloft. I am very sensitive to EVERYTHING, every stimulus, every medication, EVERYTHING! I've been off of the Florinef for almost two months, and my BP has finally stablized. In fact it went form fluctuating drastically up and down to staying pretty level at around 120/75. A lot of the problems I have were caused from too much seratonin from the Zoloft. I was having myoclonic jerks that were effecting my walking and breathing and swallowing, and oh yeah, talking. I'll be off of the Zoloft this Sunday, and so far the jerks have lessened and lessened to where I rarely have them any more. The Neuros and the Psychiatrist the Neuros insisted I see thought I was having anxiety and panic attacks when actually I was reacting to first the Paxil and then Zoloft. I was having some anxiety, but if I was kept on the lower dosage of Paxil, I probably would have recovered much more quickly. So, it is possible to recover from POTS if the cause is found and can be corrected. As in my case, if I don't let myself get dehydrated, I may never have trouble with POTS again.

Blackwolf, I'll hold you and your family in my thoughts. My sister went through a similar ordeal with her son and her best friend's husband. My nephew was about seven at the time and is now fourteen. He doesn't even remember it anymore. They got him counseling for a while after it happened, and the counselor said that since he was rather young, he probably would not remember it. I also want to share with you what works for me when I get muscle spasms. It really really really helps me if I can go for a walk. Lying down makes them worse, much worse. And if I can't walk, then putting my legs up seems to help some (like on my trash can under my desk at work). I sometimes get them only in my eyelids or only in my hands. At those times, I tried to massage my face very gently or rub my hands together. It sometimes relieves the jerks. Stress definitly makes it worse, though. I also have very loose bowels, and I use a fiber additive (I think it's called something like Beneful or Fiberful?). Anyway, you can use any of them, I like the one with no sugar. I add the recommended amount to one of my glasses of water in the morning, and if I'm having a bad time, then I also have another glass of it in the evening after dinner. It has made a remarkable difference in the pain and gas and (I'll try to be delicate), ummm explosion? that happens when I'm a bit stressed. Try to get more rest and eat as healthy as you can. Hope you feel better in every way, real soon.

Hello Carol, I'm not going to address all of your concerns, but I wanted you to know that I have read about using biofeedback to help control not only heart rate, but also blood pressure. I think that book sounds very interesting! I will probably buy it, too. As for your Doctor thinking you're a wacko or whatever, I didn't get that impression when I read your posting. It sounded to me like he is truely interested in helping you. I don't have an opinion as to whether you should or shouldn't have the TTT again. I can tell you that it costs about $2000. Like you, I've also experienced wide swings in blood pressure and waking up at night feeling dizzy and spacey, and the horrible adrenaline rushes at the least provocation. What my doctors have recently discovered is that I am highly sensitive to medications. Even more so than they first thought. I have side-effects to medications that almost no one has. This has contributed to my body over-reacting to things. I've always had a super-sensitive nervous system, but the POTS made it worse. So when I went off of my medications (which I did one at a time), I was much worse for quite a while, but then I got much better. I wanted to tell you this because I've noticed that many of the people who write on this forum have written that they are sensitive to medications, and you may very well be too. It took me weeks to recover from going off of the meds. It may be that your body needs a little longer to get back into rythym, so to speak. I would be inclined to take your doctor's advice and stay off of the beta-blocker until you see him again. In the mean time, if you aren't already drinking loads of water and adding extra sodium to your diet, you probably should do so. It's amazing how much better I am just by drinking more water and adding a teaspoon of salt to my regular diet. I hope that you find some answers and start to feel better soon!

Ann, I couldn't tolerate the beta-blocker I was on, either. I did a little research of catecholamines, and I printed something to show my PCP on Thursday. At least she always thought that my problems were not only caused by anxiety. I hope you've gotten some relief from your anxiety attacks. I've tried Xanax, but it doesn't seem to do anything for me. Another reason why I think there is more than anxiety going on.

Ann, I do feel as though I don't have POTS. I may not be cured, though. I still believe that my autonomic responses are not completely normal. It takes me forever to recover from being hot or cold. My heart rate goes up at inappropriate times, but not by 30 bpm, more like 22 to 25. I have an appointment next week with my GP who is very supportive of me even though she doesn't know much about POTS. I'll ask her about excess catecholamines. I'm pretty sure I was tested for that in early January. But it certainly is something to check out. I think I read somewhere that some people can have anxiety attacks while asleep. If that's true, then I guess I have them because I wake up sometimes shaking. It is always far worse when I am lying down. How about you? Are you worse at different times? I hope you're doing better and find something that helps your anxiety.

Dear Ann, You are the first person I've read about that sounds like what I am going through. I have been complaining to my doctors for months about weakness in my legs and arms, shaking and/or trembling, and falling down. The episodes I have come and go, but they usually last for a few weeks, and then go away for a few weeks. During the periods that are episode free, I feel mostly normal. I still have a bit of the weakness and the trembling from time-to-time. I was having a lot of forceful heart beats, plus my blood pressure has gone up and stayed up, so my cardiologist put me on an ACE inhibitor. It took almost four weeks to work, but I do feel a great deal better, and the episodes are much less severe. In fact after abut six weeks, I'm finally back in a good period. I had similar results that you did from the last tilt table test I had about two weeks ago. I was shaking so hard my limbs hurt and my hands felt numb. And yet, my heart rate and blood pressure responses were normal! I failed miserably the last time I had the TTT in January. The Doctor who did the last tests (I also had the two breathing tests) said that I am now either recovered from the POTS or in remission. YEA!!! But the real kicker is that he also said that my reaction to the tests and the episodes I've been having were caused by anxiety, yes, anxiety. I've been on 100 mg of Zoloft for three months now, and they increased it to 150 mg. How high of a dose do most people take? I'm now at the place where my "specialists" don't want to see me anymore because they say there isn't anything wrong with me other than anxiety. I just don't know what to think anymore. I'm trying not to think about it at all. I am trying to keep an open mind, though. So I'm giving the Zoloft time to work, and if the episodes don't come back, great! But if they do, my husband is pushing me real hard to go to Johns Hopkins for a complete work-up. I guess I really don't have anything to help you with, Ann, other than to say that you're not alone. I've been holding back from writing all of this out because it's been a little hard for me and my husband to accept, but I just had to get it out.

I was having very bad diarrhea for months, and when I wasn't, my stools were very loose. Taking Medimucil twice a day helps with the loose stools, and since I've been on Zoloft, it's helped a whole lot with the pain and gas that I was having.

This is very exciting news! I've been thinking that my own problems might be exacerbated or even caused by a hormone deficiency. I hope you start feeling GREAT!!!!!

Thanks Patricia. I have been pretty low lately because I just seem to be getting worse. I'll just have to be a little more patient and find out what they think is wrong, and then go from there. I have such a hard time getting anyone from the Neurology Clinic to call me back.

Hi Roy, I use something similar to those on the days that I can't walk, but have enough energy while sitting to do a little exercise. I got mine from physical therapy I had during one of my hospital stays. I think it helps keep me from being a couch potato!