dianaD

Hi Future Hope, Maybe I heard it through you! I think it was in the discussion of Dr. Grubb's latest talk. Do you think it would make us more hyper? Thanks!

Hi. Well, from what I've read, Cymbalta is the way to go with hyperadrenergic POTS. I'm going to ask my doc for it, but I was curious if anyone here is on it? Any luck? I think somebody else mentioned it, but it seems weird that it would be good for hyperadrenergics if it slows the uptake of norepi. Don't we already had too much norepi floating around? I appreciate any info you have. Beta blocker just aren't doing it for me. Thanks!

I'm sorry. What was the question?

Hi, I take it sometimes for sleep in the evening, and sometimes during the day if I have a bad day. It makes me feel almost drunk, and I'm not sure if I feel better, or if I just don't care as much!! Overall, I'd say it helps.

Hi, I have adrenergic POTS and have tried a gazillion beta blockers, but have not been successful with them. I have also tried mestinon (made me MORE adrenergic), lunesta (good for sleep), xanax (also good for sleep and it helps when a surge is coming on). Sometimes, when a surge hits, benadryl and a zyrtec will stop it. So, I think I have mast cell involvement. I take benadryl as needed, but zyrtec seems to help me the most. I would recommend ANYONE who has the adrenergic form to TRY zyrtec. It made a difference with me within 36 hours. The last few weeks I've tried minocycline, and I feel ALMOST well. I'm going to try it a few more weeks, and if if it still a tremendous help, I'm sending out the news bulletin!!!! Minocycline helps regenerate nerves, which is why we decided to try it, but no one else that I'm aware of is using it. I'm almost afraid to hope, you know? Typically, beta blockers are what people with this type take, but I wheezed and it didn't usually help after the first day. Then it caused depression after 3-4 weeks. I am a doctor and knew it could cause depression, but it just sneaks up on you, so please be careful if you try it. Good luck!

Hi again, If her corneas are really irritated, the restasis can burn more. You can ask him about a steroid drop for SHORT term use, and if the corneas clear somewhat, she may be able to tolerate the restasis better. Are her eyes dry enough to need an ointment at night time? You can even try the "stick on" goggles at the sporting goods store for night time, to preserve the moisture. They are individual goggles (no straps or anything) and have a mild adhesive. Oh, and be sure that she doesn't sleep with a ceiling fan on!! Ever! Good luck to you both, Diana

Hi Rossman, I'm so sorry for the struggles you are having. I think that most of us has probably gone through something similar to you, where so many systems are affected, it's hard to believe it is "just" POTS and/or "chronic fatigue". PLEASE! Those terms don't even begin to describe the level of debilitation we experience. I must tell you that I DO NOT believe you have Shy-Dragers. I have known 2 people with Shy-Dragers, and I, too, was afraid that was what I had, but I am pretty confident that it is NOT your diagnosis. Shy-Dragers is very aggressive, and almost immediately, both of my friends had parkinson's like symptoms, and extreme balance problems, beyond the POTSY fainting, weakness, dizziness, etc. I also, do not think you would still be here, and certainly not in good enough shape to be on the computer! I do think that autonomic dysfunction involves widespread organ involvement, pretty much everything that is "automatic" is broken. I wanted to leave you with some hope, though. I've dealt with this for a year and a half and I think I'm coming out of it, to a great degree. I never thought it could happen, but I'm feeling MUCH better now, and have not had a "surge" in about a month. Hang in. There WILL be a cure someday and you will find a medication to help you until then. Meanwhile, we are here for you.

I'm so sorry for the trouble you're having. A good doctor is a must, so how can we get you to one? A little known clause in most insurance coverages, is a "rare disease" clause, where they have to let you see a specialist in that area and be covered by the insurance. Surely your PCP can help you get to Dr. Grubb, Mayo, or Vanderbilt. It was worth it to me to go outside my insurance to get to Mayo. It cost $6,000 and went toward an out of network provider deductible, so for the rest of the year, I was able to see all kinds of doctors who knew POTS, and I had already met the deductible. I would plead with your PCP and provide him/her a list, with phone numbers for Dr. Grubb, Vanderbilt, Mayo, and maybe the list of MD's specializing in POTS in your area (I think it was on the other dysautonomia site.. brain fog... can't remember where I saw it...) Don't give up!!!

Hi, I am an eye doctor and may be able to help you somewhat, although without seeing her, this is a bit of a guess. There are many different causes for dry eyes. Depending on the cause, I will usually go with a steroid drop to reduce inflammation, and start Restasis meanwhile ( it takes at least 90 days for Restasis to get to its full effect, BTW), then go to plugs if the patient is still having problems. Plugs can be great (I have them), and I doubt you'd have any problems with the insertion procedure. Your major medical should cover it, too. You want to be sure your allergies are under control and that your eyelids are healthy (no blepharitis, crusts, flakes, plugged glands, etc.). Actually, I guess your doctor will need to be sure your lids are healthy! I don't think dry eyes are a direct consequence of POTS, though. POTS can be worsened with horSo, they may be entertwined. I hope your doc is able to help you! Diana

That is great news. I'm also going through the process of getting an appointment with him. Can you tell me if he said anything about your prognosis? There seems to be so much confusion on whether or not people actually recover from this. I, too, got mine from a virus, and I am just curious what his expert opinion is. Were you diagnosed as "adrenergic POTS"? Thank you! Diana

Hi, I'm sorry you are having so much trouble. I think that every one of us has gone through something similar at one point in time. I, too, had a list of symptoms that I took to the doctors to see if they could diagnose me. Because the symptoms seemed so diverse and unrelated, there was no way I could remember all of them, and I didn't know which one would be "the one" that would clue in the doctor. Finally, a friend of mine who is a GI doctor, asked me to e-mail him my symptoms and he is the one who figured it out! He said that he noticed that all of the symptoms pertained to the autonomic nervous system, so he knew it was a dysautonomia. Smart guy. So, this list is what saved me. You are not obsessive, just concerned! I saw a POTS specialist in Dallas who also indicated to me that because I was having so many symptoms even when lying down, he didn't think my symptoms were just POTS. And this was a guy who was supposed to know POTS!!! Anyway, I went to Mayo and within 12 hours, I had the diagonosis and treatment plan. Basically, the doc said that POTS affects so many areas of the autonomic nervous system, that the system is basically "broken". I do not think it is just a postural problem, speaking from experience. I have every single symptom on the list, except fainting, and they come and go in ANY position. I would echo everyone else's recommendation that you need to find a good doctor. I went through over 15 of them! (I can't tell you how many thought it was anxiety!!) But now, I am doing better (year and a half later) and I am starting to believe that it will eventually be a non-issue. I have an excellent neurologist and PCP, and can return to Mayo if I need to. Much of the treatment is trial and error , so after the diagnosis, almost anyone can help you (but you have to bring them the research much of the time!). Please hang in there. With the right doctor you WILL get better, but I caution that is takes a long time... You can call on us anytime, meanwhile. Diana

Hi, I have two kids - ages 8 and 9. I try to do just a little during the day, so that I can be more "up" for them when they come home. My hubbie takes them to school, and we pay someone to bring them home. People at school have tried to rally and help me with rides for them to events and things like that. We have learned to keep things simple, though, and miss quite a few outings. But I don't think that has been all bad. We have a lot of quality time, and they are in bed with me a lot, to read or play games. I don't think it is all bad. People say that the kids are well adjusted and happy and I'd have to agree. I try to get out a little and that helps. Interestingly, I go to a rec center to use the recumbant bike there, and afterwards, I can ususally run an errand. Something about getting the blood circulating or something. And I try to walk my dog every day (short walk, though, poor thing). Hang in, Diana

I am so impressed that you are able to go to school and even GET a bath!! I know it is harder for younger people to understand disabilities, but what an incredible social worker you will make!! You understand difficulties and will be so much more empathetic than your peers! Know that WE understand and that you are not alone.

I will be praying for you, too. With the proper medication, the MRI will be just a good chance for some much needed rest!! You can get through it!!! I hope, also, that you don't have MS. But, you have not been treated for MS at all, yet, so maybe some of these "POTS" symptoms will respond to the proper treatment. If you do have MS, will you PLEASE look into taking minocycline for it? It has been shown to REVERSE many MS brain changes and symptoms (you can google "monocycline nerve" for many interesting articles on the latest research in that area.). At a minimum, think of all of the friends, doctors and family members who never understood your POTS who could finally get a diagnosis they understand! We are here for you. Many prayers coming your way. Diana

I get those too, very regularly. Ihave an electric blanket and sometimes I just crank it up! Recently, I checked my BP and heart rate when I had those chills, and sure enough the blood pressure and heart rate were both LOW!! Just another sign of the autonomic system being broken, I guess. Hang in, Diana

I'm so sorry to hear about how much trouble she is having. I also have gastroparesis and gut motility problems. I wish I had a magic pill, but I can tell you what has helped for me. First, I had Metamucil everyday for a couple of months, and it did help. I got some ginger tea that is supposed to help, but I just don't like tea much, so I had trouble talking myself into it. When I had a spinach salad everyday and some metamucil, the problem was under control most of the time. Regular, mild exercise helped sometimes, if I was well enough to do it. Sometimes, though, especially during flare-ups, my food would just sit in my stomach all day, and nothing seemed to help. BUT, the motility problem just stopped, all by itself, sometimes, too. I was on Nexium for a few days, and that caused diarrhea with me, which was welcome! I hope that your friend improves and this becomes a non-issue for her soon.

Have you checked into the mast cell activation possibility? Have you tried antihistamines?

About the abdominal binder -- I found mine on the internet - you can even get them on E-bay. They're used for people after abdominal surgery. It's like a huge piece of elastic with velcro ends to hold it together. After I got mine, I saw them at our drug store! It really does help, but my ribs get sore. But, if there is something you need to do, it can give you just the boost you need to get through it. Hope this helps, Diana

Hi, YES!!! I have incredible difficulty breathing when sitting up or standing. I have had a gazillion pulmonary tests that the pulmonologists agree that it is the POTS, but they don't understand what is causing it. They say that my lung capacity is low, and that my ability to inhale and exhale (called MIP and MEP) is at about half of what it should be. Maybe some sort of nerve damage, but because it is better lying down, I would think that it is more of a mechanical difficulty... I have found that an abdominal binder that squeezes my middle helps, for some weird reason... You are not alone! Hang in, Diana

Hi everyone, Has anyone else had difficulty with wheezing since their diagnosis? I don't have asthma (but I wheeze around cats), but am developing wheezing, that is worse when my POTS symptoms are worse. I am wondering if it is a mast cell activation problem, but I'm curious if anyone else has this. Shortness of breath has always been one of my worst symptoms, but when the wheezing kicks in, it's a killer. The wheezing doesn't go away when I stop the beta blocker. Thanks so much! Diana

Hi, I have adrenergic POTS and I find that I'm not only avoiding social situations, I avoid even the telephone! I used to be a total people person, but now I get symptomatic just THINKING about interacting with people. It just sets me off. My mother-in-law was visiting and she is very high energy (the way I USED to be!). I was gasping for air within 5 minutes and my heart was racing. It's like my body is trying to keep up with her, but over-shoots. I totally understand what you mean about reacting in front of other people! Diana

Hi, Minocycline is shown to help with nerve damage in ALS, Shy-Drager's, etc. Has anyone tried it for POTS or heard anything about it? Thanks! Diana

That is so wonderful! Please let us know if it continues! It is great to hear the good stories, too! Diana

Hi all, I was starting to have a surge and took benadryl and zyrtec and it STOPPED. I've never thought I had mast cell involvement, because I don't get terribly flushed. But I decided to try it out of desperation. I have noticed that my face and neck can sometimes get a little pinker than usual, and when I take a shower, my left leg gets a red strip up the inside of my leg, but I don't get the bright red that they described in the article. Does anyone else have any experience with the mast cell possiblility? I'm curious what the latest buzz on it is... I also wanted to recommend to ANYONE with hyperadrenergic POTS to TRY benadryl or zyrtec and see if you feel better. The zyrtec me has helped every time I've tried it, and I didn't know if it was just a coincidence or not. They are just starting to really learn about this, so we may be paving new ground for the researchers. Diana

Hi, I've noticed that my fasting blood sugar is also increasing (about 110 now), my weight has increased, as has my waist line. And I'm having a great deal of trouble losing the extra 20 lbs. I have. I am pretty sedentary (although I still try to exercise most days). When I first got POTS, I gained a few pounds, then suddenly lost about 15, then regained another 20-25. And this was just over a few months time! Do you think the POTS has affected you in this way? Blood sugar metabolism IS an autonomic function, and I did suffer with the "rebound hypoglycemia" typical of pots. It wouldn't surprise me at all to find out that POTS is a factor... Diana