Sylvie33

Hi Rah, It seems like you are doing all the right things in terms of your classes and teachers. I'm newly diagnosed and still trying to understand the relationship of POTS and exercise...but the recent thread on the "Levine Protocol" here emphasizes the relationship between exercise and POTS symptoms is a highly erratic and individual one. Exercise might ameliorate or exacerbate symptoms...As you can read, even within a carefully controlled study, a relatively small percentage of participants emerged symptom-free...and we don't know for how long they remained so....if only exercise would banish POTS! I think your own and others' comments here point in the direction you might be taking on too much now....it's great you were able to be so active recently, but as I noted, it's hard to base your current needs on what was tolerable/effective for you even in the recent past. The good news is that positive change is very possible for you. I loved school, but always found it stressful...and stress can affect everything...it can affect pain and muscles. Unfortunately, the deregulation of our autonomic nervous systems magnifies its effects. Perhaps you can arrange time for a conversation with your doctor to discuss ways to better address your symptoms. You may just be going through a period of adjustment now. None of this your fault...it's just a challenge to sort out what works best as symptoms and circumstances change. Best, S

Hi Rah, I'm a professor on sick leave .. so I'm now familiar with both sides of your dilemma...here are some questions and observations. 1. Have you registered as a student with a disability? This is essential for necessary services as well as to ensure fair treatment. For example, perhaps you can get help going to classes (having someone carry your books etc)....this may preclude need for a wheelchair. 2. Are you taking on too much? I would suggest a very light schedule this semester. It may be too late to arrange this now, but one course and an independent study might be a good option...I always suggest to returning students (including healthy ones) to take only the number of courses in which they can excel.....this will boost your confidence as well as lighten your load. 3. You might be anxious about your return, which exacerbates all symptoms...this will fade as you adjust, a meet your teachers, and discuss your needs and meeting course requirements (see above and below). 4. E-mail and make appointments to see all your professors now. Introduce yourself...no need to state your specific disability...but it is important to explain what your needs are, and to give the heads up about possible situations pertinent to your illness. Let them see you are serious and enthusiastic. Ask about their policies about making up work if necessary....etc. After the arranged first meeting, check in frequently during office hours. Face time is better than email. In this way you are grooming them to support you during the semester and in the future (ie for independent study work, etc.) and affirming you are a serious and responsible student. Any good professor will acknowledge your commitment and will be receptive to your needs..if not, drop them now. (Might be hard with required courses...but you can negotiate in the future). I realize you have financial commitments, but your school should be receptive to your situation, and I've worked out all sorts of deals with serious students....this is why forming relationships early on is so important. Feel free to PM me if you like.

Thank you, Yogini, for the brand recommendations. I've never seem melatonin packaged in anything but capsules...I suppose if you have endless time you could buy your own capsules and divide..... Yet, if you have only occasionally insomnia, and tiny doses of Ambien help, it may ultimately be healthier than a daily dose of melatonin.... S

Hi Exhale, I think the suggestions to call/see your doctor are very appropriate. I also think taking off for a run, especially after not exercising for awhile, was obviously too much for you. I was very athletic (high level yoga and swimming) up until last year when my dysautonomia began. I felt too ill to exercise until about three months ago. I'm now working one-on-one with a body worker/yoga teacher. I'm taking things extremely slowly....yet I can already see changes in my strength and balance. It has been very difficult to let go of the person I was such a short time ago...in all respects. Physical exercise is one area I know will result in harsh effects if I push too much. I had a nuclear stress test yesterday (it was as bad as it sounds). I felt literally broken into pieces when it was done....for the treadmill was overwhelming...I was a mess all evening. Today I just got a massage instead of doing yoga....I feel so much better....I'll do yoga tomorrow! So my main point is to initially do less than you think you can....talk it over with your Dr.....you may also consider PT if you are covered for it, so you can be watched closely. S

Hi Yogini, I began taking supplements when I first became very ill last year. I may stop now after seeing the latest PBS "Frontline" last night....scary. Anyway, after doing research on melatonin, I was surprised to learn it is a hormone, only available by prescription in Europe. So it is not a benign substance. Also, as "Frontline" emphasized, we have no idea what's in a particular bottle or capsule. Your experience may reflect this. I also learned the use of melatonin (if it is melatonin) is best for regulating circadian rhythms rather than helping to induce sleep on a particular night. It also supposedly has a short half-life, so time released low-doses are best....used consistently. I do take 3mg. when I go to sleep and sometimes another when I invariably wake at 4am (usually with tachycardia). I also take a total of .75 mg Klonopin in .25 mg doses, so although I 'think' melatonin helps, I'm not sure it does. I don't blame you for staying away from the "z" drugs...or from benzodiazepines. Luckily the latter is effective for me in tiny doses, esp. when I am tachy. By the way, this is not an endorsement, but Frontline did note the only supplement manufacturer they found that voluntarily tests and guarantees its products is Nature's Gate, a Canadian firm. I really encourage readers to see this show... Hope this info. Is helpful!

Sarah, I PM'd you -- would love to talk catechoramines when I read your cites! (Now, could I ever imagine writing that sentence even a week ago?!). Rachel, Your story is amazing -- I have read your various posts about your son, but had no idea he was so debilitated at first. It must have been terrifying, and the strength and resolve of the two of you is mind-boggling and inspiring. I have read it several times to give myself heart....It amazes me that you both clearly overcame so much fear, and opened yourself up to be strong and very educated, to get to where you two are today. Like many "newbies," I feel my greatest challenge is just getting over my own fear, anxiety and depression about being ill. When I have my brief windows of emotional respite, I feel I can manage all that comes along with this illness. I have had other medical issues in the past -- a brain tumor (benign) as well as a cerebral hemorrhage -- and I just sailed through. I recovered in record time, and never doubted my ability to get well. I feel very differently with this -- why I so appreciate your telling me your and your son's story. Thank you so much for sharing it with me -- and I wish you both the best -- I now know just how far you both have come when I read your posts! --Sylvie

Dear Lindz, We've talked before here, and I'll say again to you to please try and take one thing at a time.... If you read my thread ("old person with POTS etc."), you can see my diagnosis is coming in....maddeningly slowly... yet "serious" to quote the new cardiologist...but I'm doing my best to deal with it. I've also been symptomatic for over two years. All my symptoms rolled in with depression and anxiety.....which are steadily getting much better now, as my dysautonomic symptoms worsen....but I am far more able to cope than I was even a few months ago. Remember, your feelings can pass... It seems you need calmness now. You have this forum and all our cumulative knowledge about anxiety, uncertainty, and fear... So please breathe...no kidding...it helps. Try your best to take your mind off unknowns... Sylvie

More lovely replies and thank you for your stories....I feel so heartened by your company. Nymph...I haven't gotten all my results back, but so far it does not look like I have an AI disorder...I've asked for a lip biopsy for Sjogrens, but have been discouraged by my rheumatologist. She owes me a call, so I'll bring it up again. I know I'm the right age for it (you young thing!). Great that you're pushing through with your studies and teaching....and that you have a plan b. So smart. My sister was a state daycare lobbyist and became a classroom teacher at 45. When she was 55 she got another masters and became a librarian....she's now 64 and going strong....lots of roads you might go down. Gosh Liz, you have been through so much....I'll PM to learn more about your meds, we share a lot of symptoms,and I'm hopeful, since this new diagnosis, I might be able to feel more even...I can only describe how I feel as very "jagged," and fatigued, now I know why, with my BP all over the place. I'm grateful for your support and prayers, and impressed you have accomplished all that you have. Kitt...what great information. I've been afraid to drive for months. I've never fainted, but was given the term presyncope on Wednesday....well, that's it. I live in NYC and am far more afraid of running someone down than a car accident. On the other hand, subway stairs and standing are challenging. Actually, everything now seems challenging...I'm really hoping for just an improvement with meds...a little bit...I'll be happy with that. I can understand how the work of a pacemaker might be superseded by a faulty autonomic system. Good advice. The idea of surgery of any kind seems overwhelming....Ill also look up more on catecholamines...I'm clueless. Can you fill me in a bit more? As for yoga...I was a fanatic for ten years. I gave it up over a year ago because one of my early symptoms was falling. Now, after just two months (after total deconditioning) I'm seeing some results. But it's HARD work, even these baby steps, when it used to be pure joy. I'm so lucky to have a great teacher.....she totally gets it.. Once again, thanks so much....you've all been so helpful. Please PM me if you'd like to talk more, or if I can be helpful to you in any way.... Sylvie

To Katy...if you have an underlying autoimmune disorder, there are treatments, like IVIG, that can be really helpful. I'm continuing rheumatic testing, even though it's pretty clear my case is idiopathic, just for the possibility of such treatment. Robin, there is nothing quite like anxiety with a deregulated autonomic system. Makes me long for the days of old-fashioned anxiety attacks! I now have a great talk therapist who did a lot of reading about dysautonomia just for me, and I push myself to see her...it's so helpful. I also suggest getting some tapes, and/or direct instruction if you can, for meditation and/or light yoga (or any physical movement). I also take a low dose of Klonopin at night. To Katy too: I also had a few very stressful years before I got sick...it might be more likely that latent dysautonomia made things feel more stressful rather than stress "causing" this. In any event, it's water under the bridge for us. It's important to walk away from self blame (I tend to this too). We all have a lot of adjustment to do, so of course there is lots of anxiety. I'm trying to seek as much good help with this as possible. We're lucky to have this forum! ....S

Thank you all for your open and sympathetic replies...just what I wished for...for Angelloz, let me be honest....I'm not accepting and adjusting well. I'm a lot better than I was, but each diagnosis is simultaneously reassuring (no I'm not imagining this) but also very scary. Yesterday was pretty devastating, for I'd clung to the belief this was a passing thing...yet Angelloz, your improvement is heartening, especially your ability to get out there and shop, etc. I'm hoping that I'll adjust the way you have. Dancer, thank you for addressing my hair (loss!)...I havent gotten my thyroid tests back, but I'm assuming it's due to neuropathy. My son was here today, and scoffed at the idea I look like I'm losing it....but it's clear to me (there was more on my brush today than on my head). Lewis, I really like all your posts, and I'm sure you're right about supplements...I have no reaction I know of, but I'm going to try the biotin. I take what you have written to others about exercising seriously, (I just finished a session with my yoga teacher; I think it's the best thing I'm doing now). p8d, we think alike. I had joined a Buddhist temple when I was first symptomatic and I bought Toni Bernhard's book before I knew what it meant to be really sick and bedbound. She's great...I recommend her to all who are reading this. Now I'm too sick to even sit at the temple to meditate, but luckily my husband got into it....I'm so glad, for its a great outlet for all the stress that comes with this. P8d and Angelloz, I do appreciate what you each wrote about teaching....for I'm grieving...I held out hope until yesterday I could somehow go back....I think the frank prognosis I got (and I think this is a really, good, kind doc....found here, of course) has nixed this idea. My son, who flew in from LA today, was worried I am spending time on this forum, but I think it's so great to feel surrounded by people who understand all the oddities of this illness....it defies description. I know I just have to take time to feel well enough to put myself on some sort of new path....thank you so much for helping me. Please feel free to PM me if you'd like to talk more about any issues raised here! Sylvie

Hi DG, Thanks for writing....I'm so impressed by the work of your talented and focused girls (and their mom for your continued support and encouragement!). I'm worried about salt, for you can see my BP is high. I'm drinking coffee now! I just really didn't realize I had severe cardiac symptoms. My (former) neuro did a quick poor man's TT and told me my 20 pts. drop in BP was below the cut-off of 30! (Wrong I was told last week!) So I was just at a loss @ my fatigue...etc. I am very heartened by the story of your girls....for I've left my work (and a book) behind me last year....I felt completely overwhelmed. I'm in a better now.....learning slowly to accept my new life. So nice to also be encouraged by you! ---- Sylvie

Hey everyone, I've been on this site since last spring when I was hit with a barrage of dysautonomia symptoms. They arrived on a wave of depression (finally much better) so it was difficult to get my first neurologist to take me seriously until my small fiber biopsies came back positive in October...he was chagrined for a day or so...Basically I was hoping it was all anxiety....the least medically noxious diagnosis I could hope for. After seeking hitting up the gastroenterologist (+ gerd), rheumatologist (- autoimmune disease, so far), ophthalmologist (signs of small fiber damage) I finally went to the cardiologist last Monday, where I was positive for POTS and OI with simple monitoring. TTT today (not fun at all). Had to stop it when my PB fell from 140/90 to 80/60! Did not faint, but was extremely nauseous and sweaty. So Vasovagal Dysautonomia, he said, noting I could have POTS or OI any old time. Does the term neurocardiogenic cover all three? Good news for all you young folks out there...he's seen many people "outgrow" this! But at my age, with a rapid onset and clear small fiber neuropathy,....it's "serious," he said. So now what? Got propanalol...10 mg.immediately helped my tachycardia. I'm due back next week for a nuclear stress test and more discussion. My very worst symptom is fatigue and I now know why....a sort of relief. Could this be pure autonomic failure? I am working with a yoga teacher...my balance is good and I'm getting stronger (so it's not MSA). However I still have difficulty sitting unsupported without reeling and feeling jagged after ten minutes. I'm housebound. Any advice? Tests I should have? Medication? Diet....I eat very healthily....I'm taking l-lysine, cq10, magnesium, D3, and b-12. I'm sort of cynical about them. Just got biotin for my vanishing hair. Jokes welcome Getting used to the idea of no longer being a professor (very sad, but this is my second year on leave)....I would like to get back to painting...most of all I'd like to sit up! Would love to hear from old vets and all you smart, experienced young people! Thanks so much! Sylvie

There are a number of medications I know some people on this site are using....some primarily targeted to treat ADD (like modafinil) and others for conditions like Alzheimer's. I just ordered and received sulbutiamine....a supplement in the US and a prescription drug in Europe....its synthesized thiamine said to improve energy and cognition. I'm afraid to take it, for insomnia is a side effect....as is true with most of these other meds. Also, I like many people here, am so sensitive to all drugs. I'm sure others will share their experiences...we are in a bind!

Dear Sarah, No apologies about subject matter! We are all here here to learn more about our errant bodies and to hopefully help others dealing with symptoms and issues. I like it that you are forthright and not using euphemisms. I was on propanalol for too many years for high blood pressure (I say this because I later learned it was contraindicated by other medications I was on). No constipation then. You should Google it however....I find Wikipedia to be really an excellent starting point. If I remember you correctly, you are newly diagnosed...right? The difficulty with this disorder is the sheer unpredictability of symptoms. You just may have motility issues now. Could be IBS or simple constipation. I first became really ill about nine months ago. Got GERD for the first time and my large bowel simply froze for a while. Miralax helped, as did milk of magnesia (which did cause unpleasant cramping). My digestion is now much better yet I still tend towards constipation. I use a stool softener -- docusate sodium --- on as as-needed basis... takes a few days (so no need to repeat doses right away) but very effective without diarrhea or cramping. Hydration is imperative. As for the issue of others "not getting it;" this is difficult. I want to start a thread on the creative description of symptoms! Here are some of mine: jagged, reeling, broken, vibrating....feeling like I've just run up a hill just when standing up...so, so exhausted I can't move... Sometimes I just take my husband's hand and put it on my chest so he can feel the tachycardia....gets me a hug! I should lug out my thesaurus to be even more articulate.... Yet I just walked half a mile and back to a salon to lop off my thinning brittle hair..and I feel...happy! Little windows of this lately for the first time since this all hit. Just take heart that symptoms (and emotions) change, and sometimes for the better. This is a diagnosis that takes so much adjustment....and it is so hard because it is rare and incomprehensible to myself, let alone others, but as we become more knowledgeable, hopefully those around us will be too. Sylvie

Hi, Just a typical Saturday night for me doing medical research.... I looked up clonidine and noticed a side effect is a painful swelling of the salivary gland (located, it said, behind the ear). Do you take it? Could be a medical mystery solved if you do! Hope you're better now! S

Hi, I must play Jewish mother here because I am one....it should hurt you to get an EKG for peace of mind? I'm concerned because of your stated heart problems in you signature. If this is new for you, and serious enough for you to post, it would be prudent to check it out ASAP....especially since you have radiant pain in your back. You know not to fool around with chest pain! Please report back....(hope it's simply holiday GERD!) Sylvie

Oh Katie, Only someone as diligent as you are will read this far down! Far from shutting down discussion, you made a convincing argument (for me) to begin it anew in a more open framework. Happy New Year! Sylvie

Ditto to all! As I just wrote a friend, my husband is off to two parties...I shed about three tears (severe dry eye), but I am fine...just need to rest this overly heavy head of mine! Looking forward to learning (more) from you all next year! Sylvie

Hey Katy, Thank you for your thoughtful reply. I understand your hesitancy to address the issue of exercise in the context of this study. I will start a new thread in the new year! Happy New Year (knowing the only way I will see midnight is if I wake up in my first of several annoying night sweats). --Sylvie

Hi Angie, You are clearly worried about this, so it appears to be something new. My thought is waiting over a month to check this out is too long...particularly because you are having hearing disturbances. Try to see if your neurologist can see you (much) sooner. Minimally, try to see if you can talk on the phone. Do you have a GP you like? Perhaps this person can do a basic assessment soon and run interference for you with the neuro. Best, Sylvie

I have no doubt the Levine findings are overblown for the general POTS population, yet I am now wondering how much my inactivity is worsening my symptoms. For example, my tachycardia and neuropathic pain are increasing daily. (The only advice the bigwig dysautonomia specialist gave me in November was to MOVE!) Like many people here, I was very athletic until I became ill a year ago...I did strenuous yoga every day...planned my schedule around my classes. When I had a brief recovery last January-April, I swam. Now I have been bedridden since April, but have begun gentle yoga 3x/week. It is very helpful, and I know I should increase it to every day. My symptoms are still very present, but I am stronger and my balance is much improved. I also feel almost well for an hour or so after a session....helps that it is capped by a massage. I do manage to take buses and the subway to appt.s each week, with a lot of difficulty. I still have crushing fatigue, and I'm sort of shocked I find it so hard to leave my bed, but I only feel a true respite from my symptoms when I am supine...with head support. I think the emphasis on exercise "cures" masks the real need for consistent, apppropriate exercise to prevent deconditioning and to preserve what wellness we have. Firewater and Ancy's posts (as well as the drop-out rate in Levine's study), suggest the need for highly individualized programs.... I'm curious to see what others have experienced in terms of deconditioning and ways to address it .Again, I am not seeking a cure, but I would like to forestall further deterioration! Thanks.. Sylvie

You're welcome Evergreen. Nymph says it so well. Please try and act on the wise advice she offers about depression. Sylvie

Dear Evergreen, I've also dealt with depression most of my life. As you can see from my signature, I now have reason to be pretty scared of antidepressants. That being said, I had the most profound depression of my life emerge as my severe dysautonomic symptoms rolled in last April, and for the past two months I am now on 10mg. of Nortriptyline, as well as 7.5 mg of mirtazipine for sleep. These are "baby doses... I'm not happy taking these and I am still depressed, but my head is above water. My advice is that your other symptoms will be far easier to address if you treat your depression (which very often accompanies other neurological illnesses). However, based on your comments about candida and mold, it seems like you are still just beginning your quest to find out why you feel ill. It seems like you also need a good basic physician to help guide you (no easy task to find one I know). So, I strongly suggest you first find is good counselor, and explore "talk therapy" before taking psych meds, especially be you are diagnosed. This is such an important part of my treatment. If you are truly suffering from depression, meds may be in order, but note what I and others here have emphasized...you may be hypersensitive to them, so go very slowly. Many, like Paxil and Effexor, are also very difficult to withdraw from. Some are beneficial for POTS and neuropathy, but you must first find out if you have these. To sum up, I suggest you proceed very cautiously with meds, but make haste in finding a good counselor to see you through this whole ordeal. If you can,I suggest you interview counselors to ensure a good fit. Just ask for short appointment....anyone good will support this idea. If you are short on cash, there are community-based services to tap into....can't really interview in this scenario, but try to do what you can for a good fit. This is all overwhelming I know....why I think it is an important first step to get a good counselor first! Bring DINET materials to your first appointment! My best to you, Sylvie

Hi Rich and Corina, I found the link myself, but thank you Rich. I see your point about it not making explicit claims, but price does implicitly suggest it is more....clearly we agree though! As I mentioned before, I really enjoy your well-researched posts as well as how assertive you are as you seek treatment and answers. I see you've had far more testing than I have....perhaps I will PM you to see what has been most helpful. I'm now trying to rest up for a party. We had a friend stay the night, and I felt almost well....paying for it today, of course! Have a lovely holiday (...to all readers:. Sylvie

Thank you ks, I do have access to PubMed, my favorite reading source these days.....much to learn. Yet I still feel a web-based market approach (for a concept still undergoing trials) sends up red flags. Thanks for the link!