lynnie22

looneymom, you asked for info on adrenal fatigue. Here is a link my friend sent to me: http://www.drlam.com/index.php I am also going to check it out.

Hi Jackie, That sounds fascinating. It's amazing that we can actually learn to control our autonomic nervous system. What I'm curious about from anyone who's done this --Daddysgirl perhaps, is how does it become automatic and not a frequent need to breathe or be aware? How does the change become one you don't have to think about like in biofeedback where awareness is so important? Good luck again, Jackie.

Hi Margie, Is it a specific yoga studio that would be also in NYC where I am, (like Iyengar or Kripalu or Cyndi Lee) or did you shop around to various places to find the right fit? Hi Looney mom, I have been in physical therapy for months, just told it wasn't helping my frozen shoulder (caused alot of pain and little help) and they wouldn't treat more than one condition with insurance. In any case, looking for a new PT place in any case.

Margie -- I wanted to ask you what kind of yoga has helped you. I am very deconditioned, have inquired about yoga and have been told that the only type of yoga for limitations is Iyengar, but a class for special needs. Did you join a class or get individual help? I'm very interested in beginning, limited at the moment by torn rotator cuffs. Looneymom, I asked a friend of mine very versed in adrenal fatigue if she could recommend some articles to post. Awaiting her response.

Just wanted to add that looneymom just posted about the center and many positive things said. Sounds very promising.

Great to read all this. Very encouraging. I recently posted asking people about alternative treatments that have worked. I keep reading more and more about this program -- it sounds very promising. Congratulations on your tremendous progress. Just a question about her two week program, if you can answer. I have heard that it is physically vigorous. Is that true, or is it tailor made in that sense also for each person? I would possibly be interested, but am totally out of shape, not at all helpful for my condition. Thanks alot.

I just wanted to wish you good luck, Jackie and will be very interested in hearing about your experience.

I have read several posts about many more 'natural' approaches to helping POTS -- going gluten free, biofeedback and yoga, organic foods, supplements, etc. Has anyone ever been cured of POTS by using any of these routes? Or, what has really helped? I am really curious and interested in what we can use and do -- putting our experiences together to see what works best.

Hi, thanks for all your support. It was good to read about your experiences -- I like the idea of firing a doctor. I did start at Mayo as many of you, although not in the POTS clinic -- but with a cardiologist for my tachycardia who then sent me for autonomic testing. From what I've been reading, it may be that Mayo will not take me back since I'm 'too old'. I find that so hard to believe that they are refusing to treat patients over 50, unless I misunderstood. My internist I've seen for over 30 years....he's always been there for me. He believes I have POTS but knows nothing about it and won't learn. That is very disappointing. He and the crew of doctors at his hospital that I've seen for years think I'm making a 'big deal' about how I feel. I did find a POTS doctor here in NYC but I need other specialists who at least are willing to learn about it and help me differentiate between things. Jackie, you mentioned about a low grade fever for days a month. Although this is off topic, I wanted to know if this was a related symptom. My Mayo certification also has given me some legitimacy. It's just these docs think it's no big deal, and for example, I'm scheduled to have a endoscopy this week with heavy duty anesthesia and considering my erratic bp/hr these days, I'm alittle concerned. The doctor is completely dismissive because he doesn't get it. Despite the legitimacy, I'm still viewed as somewhat crazy to get laid up so often.

I read some old posts about breathing problems, and for the last few days once again, that is me. But, is it POTS, or is it not? Most doctors who are specialists in other areas like the pulmonologist are not very interested in seeing me these days. For years, I kept asking all of them for help with my racing heart, my breathing problems, my exhaustion most of all, so many things, and they dismissed me as "not in shape" or as 'depressed'. I finally got diagnosed, but problems still crop up, and the regular crew still dismiss me, thinking I'm making too much of a deal of things, which maybe I am. I hate the fact that I focus so much on all these limitations. Some days are good, but then there are a string of 'bad' days, and I'm never sure if I'm sick, if something else has gone wrong, or it's my autonomic dysfunction. What do you do, how do you balance it all, and what do you do about the uninformed, and dismissive other specialists? How do you know?

Hi Chaos, I just wanted to thank you for the link. It has taken me a while to get online due to shoulders, etc. Really feeling like I am having a bout of CFS or something else -- exhaustion, sore throat, trouble breathing. Trying to find someone in NYC who can treat this -- the neuro with POTS doesn't treat these symptoms. Thanks.

About 15 years ago, I became so exhausted that I couldn't move, had vertigo and a sore throat. Finally I was diagnosed with CFS. It seemed to get better after about two years, but bouts of exhaustion came and went. Then I started having OI and exhaustion and Mayo diagnosed me with POTS. About three weeks ago, after a few months of dealing with the sleeplessness of a torn rotator cuff and frozen shoulder (not better yet), I became exhausted. I assumed it was simply sleep deprivation, but I also got that old familiar sore throat and dizziness. I think perhaps the CFS has returned, not sure. I've never been sure what CFS even is, but I've heard there is a correlation. I just wanted to know if any of you know the correlation, and what is the best approach to getting a diagnosis and treatment. There's much going on in my neck of the woods -- I feel pretty overwhelmed. POTS, total exhaustion, now the other shoulder is going, significant weight loss for unknown reasons, struggling to go to work but getting harder and harder. And can't sleep because of the shoulders. Thanks for listening.

Hi Flatout, I'm coming to this a bit late. Good luck on your trip to Mayo. I was there three years ago, self-referred. None of my doctors nor I had a clue what was wrong with me but suggested I go there. Self-referred luckily landed me with a cardiologist who did all the testing for POTS, even though I wasn't in that clinic. That rule is very disturbing, since so many of us are over 50, I am 64 and would never have gotten tested unless I landed with a good doctor there. I don't understand their rule, but I imagine if you have a couple of appointments with a POTS savvy cardiologist and neurologist set up beforehand, I can't imagine they aren't obligated to follow up with the right tests. Besides POTS I recently got diagnosed with idiopathic peripheral autonomic neuropathy which seems to be reserved for the 60 plus group--it necessitated most of the same tests. So sorry for your frustrating experience. By the way once I was tested, they then needed a doctor here to send all the results to, but self-referred is good, as long as you know who you're seeing. Anyway, good luck again. and hope you find a way in to get the help you need.

sorry for my brain fog.

it's been so interesting to read and learn all of this. Alex, my POTS doctor told me the mestinon would not affect me at all unless I stood so am confused about the supine hypertension. He was mainly concerned about improving my tone and energy and boosting my bp a little as well as lowering my hr standing.

Well generally the mestinon sounds good for most of you. Good to hear Rama that it has few side effects. As I mention in another post, I have had reactions to everything lately, even vitamins.

Hi Everyone, What is this hyper allergic state that just gets worse about? LindaJoy, I also have become allergic to antibiotics and right now I have bronchitis, have no idea what the doc is going to do. He is not at all POTS savvy, never heard of it till me. SongCanary, for the colonoscopy, they said maybe I should hold off with my inderol until after the colonoscopy since it will lower my bp. Please explain how taking it worked for you, and why. I do know that the anesthesia causes my heart to race even more when I wake up. Katy, what a list! Sorry about this hope the Xolair works. I am confused as to why this is happening -- is it like an autoimmune overreaction to everything? I am hoping to find an antibiotic that I can take (doubtful) or something that can be given for the allergy, and hope the colonoscopy sedative is something I do not react to. Anyway, thanks for responding. Overwhelming. Good look to us all.

Since being diagnosed, I have become more and more allergic -- It's as if my immune system is in hyper reactive mode. This is becoming very problematic as I cannot seem to take any new medications that my body is not used to without a major allergy reaction. Even at very low doses. I have a frozen shoulder/torn rotator cuff/labral tear and cannot take ANY pain killers except advil which hardly does the trick. Even benign lidoderm patches caused this metallic taste in my throat followed by a sinus allegy for days. The pain of the shoulder with PT is a killer. I did have one cortisone shot which didn't do a thing, they want to give me another one in a different place in the shoulder. A bit wary of that, although few options. Haven't yet been successful at taking the pots medications either, and I seem to just be more sensitive to everything, whether it's stress or standing or meds. Next week i've finally taking a much awaited colonoscopy and I'm nervous that I'm going to react to whatever they give me, let alone I'm mystified how I will get to the place without any beta blockers. My tachycardia on standing has now become much worse. But my main concern is this allergy response. Does anyone find this to be the case for them? What do you do for it? Thanks!!

Thanks for your replies. I will search for posts on mestinon, Alex. Sorry about your experience Vettesage. Although I am not new to POTS, I couldn't find a doctor to treat me for the last two and a half years. But it wasn't as bad back then as it is becoming lately, so I'm pretty new to knowing much about the treatments. I don't know why things seem to be getting so much worse the last few months, and I sometimes feel so frustrated and scared, just because everything seems to be happening at once. But I'm glad to have found you all.

Went to my pots doctor who gave me a prescription for mestinon. It is used for myasthenia gravis and increasing muscle strength. It is true that I am very tired and deconditioned. He said it would up my bp as well. Has anyone been treated with this?

Well I can certainly relate -- it mirrors exactly what I've been dealing with. For the past year or so, I have become allergic to almost everything new or even unused for a while -- so all antibiotics at this point are out. I even had an allergy to a calcium supplement, if severe body itching for hours is an allergy. But I don't think I should be so afraid. It's ridiculous I tell myself, when this might actually help me. The pots doctor has prescribed the same for me, but I really hesitate because of my occasional very high bp. But right now I have a regimen of new medicines waiting for me for everything. The best way I know to handle any of this is to take a small dose at first and see. I am one of those who read warnings and my endo gave me armour to replace the very ineffective synthroid with the warning that it could cause palpitations at any time, so of course it has made me hesitant. Still, I think the best thing to do is to try things and see. Before I had some bad reactions, I wasn't scared to take anything. I think those bad experiences just color everything but somethings will really help. I do think since the pots, I have become more sensitive to everything -- my moods, gravity, adrenaline, pills-- so I am trying to respect that by trying to take less.

Hi All, I wanted to respond to your posts alittle. Futurehope, your post about exercising despite exhaustion has encouraged me. Thanks. I have this crazy work schedule that involves hours of sitting. It seems I never have time for me....but I guess it's good my job is sitting since I can't stand easily. But still terrible for my pots and general health. I have a recumbent bike at home which I use way too infrequently. Yes I have always taken brand synthroid, but my numbers have gotten more and more out of whack, so I will try Armour and see what happens. I don't know much about Dr. Levine's program. I have a feeling I'm hardly in shape for it right now. You really have tried a lot -- but sorry it hasn't yielded results. It is frustrating. Julie, I personally think your T3 should be normal, it is what the body uses after all. My own endo was trying to explain to me that the numbers at the cellular level may be totally normal even if the blood says otherwise. But he then said if I don't feel well, then we have to keep trying to adjust it. So maybe there is a relationship between pots and our thyroid hormones. I did the reverse T3 test which was abnormal. Why won't they do it for you, Julie? Of course the fact that it was abnormal still didn't change anything.

sorry. I'm not awake. I meant Rochester, MN.

By the way, I was to Mayo in Cleveland. Does anyone know how the two are different?

that's scary that any part isn't accepting Medicare.