Sylvie33

Dear MTG, Well said --didn't know about DINET's statement. -

Hi, My boys (husband and adult son) chipped in and got me a yoga teacher/body worker 3x/week. I've been virtually bedridden since April. It's a miracle -- we do yoga (I was a fanatic before I got sick) and she ends with a massage. It's the "laying on of hands" that does it. I feel "well" -- like my old self for at least an hour. (It has now been 7 hours --bedtime --and I feel like a mess.) Mind you, the exercise is difficult; it is very paced, but I am breathless and irritated --none of the joy I used to feel. I also feel really bad when I walk, or go to the Dr. (My life now). I just feel great when it's over after the massage. I realize I am so lucky to have a kid helping me, for this ain't cheap. Yet it is amazing to have a window open just a crack to the feeling of health. I also have gained a lot of strength back in four weeks (and I have significant atrophy). This might be something couples or good friends can do. S

Hi Lisa, Katybug's observations seem like a good starting point. lI wish to add two comments to the mix: 1. You can have dysautonomia without POTS, and 2. My antidepressant cocktail led to serotonin syndrome and and my subsequent abrupt withdrawal (I was in hypertensive crisis) apparently triggered what I now know are small fiber sensory and autonomic neuropathies (positive skin biopsies). I was taking a very high dose of venlaflexin... with a high dose of Paxil and a beta-blocker.... AND I had lots of neurological symptoms (tremors, loss of balance, etc.)from these meds before I went into crisis. They reversed when I went off the drugs. I don't think you are at all in the same situation, however... I and my new shrink (who is also a neurologist) think venlaflexin is a particularly nasty and neurologically "dirty" AD...make sure you taper off of it very, very slowly and you may feel much better....although you may still have a sleep disorder. I have also read of an antidepressant only available in Europe ---Stablon--a serotonin inhibitor-- that is apparently as effective as the best SS and SNRIs and has virtually no side effects (extremely short half life. Has to be taken 3x/day --so very easy to discontinue). Still probably not to be used during pregnancy, but you have better options than Effexor. I hope this is helpful, Lisa Sylvie

Dear Evergreen, I went to the site for the heck of it. My suggestion is to forget you ever saw this. Snake oil, quackery...feeding on the very real uncertainties of having very difficult to diagnose and treat disorders. The ONLY information on this site are testimonials, and interesting that those experiencing miraculous cures happen to have 10 or so confounding conditions simultaneously! (Let's rope in everyone we can with a single uplifting story!) No mention at all about what is on those tapes, let alone any allusion to real research. Promises of singing, dancing, and pregnancy! A 30 lb. Weight gain with bison broth (loved that line explaining why the lucky Ms. Dinkle looked so fetching in her wheelchair). Granted I am extremely frustrated by the pace of diagnosis and relative lack of treatment ... nature of the beast(s) we unfortunately face. I know how much you want to be well, but I'm also angry at outfits seeking easy profits from this wish. Best of luck with your tests, and take heart that many young people like you do recover.... S .

Dear Rich and fellow readers, Timely topic for me; I've been reading a lot about CFS/ME in the past few weeks. Porfound fatigue is my most disabling symptom (life course right now?). However I know I have small fiber sensory and autonomic neuropathies. I only believe I don't have cfs/me because, so far, it appears I don't have an underlying autoimmune disorder or indications of one, either through testing or having joint pain, muscle aches, a precipitating virus...etc ....but as I said...so far. Lately, I've also read more and more about cfe/me sufferers who have a slew of dysautonomia symptoms. Although I' not signed in on CFS sites, I did join a CFS support group here in NYC just last week. (Have not heard back). Clearly there is lots of overlap, and also clearly there is next to no research funding for either disorder (I just read there are as many people in the US with CFS as there are people with HIV, yet the respective research budgets are something like 1.5 million vs. 3 billion!) Brian Vastag, who is a former Washington Post science writer with severely disabling CFS, is on the back of the NIH about this. When I think about the incredible strides in HIV treatment, it really hits home. (A treatment plan...now there's an idea!) All of this is in a great Atlantic Monthly article (10/15... should be easy to google). Most exciting thing in article for me is how Vastag describes moving to a CFS community in Kauai, Hawaii. He even fell in love with another resident and says they are happily doing nothing together! I'm trying to find out more about it. I would love to have such company in a beautiful, warm setting. To sum up, I think that placement in one or the other camp may be arbitrary at this point. Just as there are many types of dysautonomia, CFS may be a similarly broad "catch-all" diagnosis. I am also reading about "acute sickness response" that is characteristic of a lot of conditions aside from cfs (sarcoidosis, MS, etc): this term is the best one I've found so far to describe how I feel. The term is most often used when describing conditions where disease-fighting cytokines (things like hormones) attack our own cells. This is why I wish to have further autoimmune testing. (If anyone can write about cytokines in plain English, I would love to hear more!). I feel that if my fatigue was not so crushing, I would see myself (and my future) in a very different way. It blows my mind how much I've changed in less than a year. Thanks Rich for this thread. Lots to think about and discuss. Sylvie

Hi, My "other" is autonomic and sensory neuropathic. Cause may be drug toxicity but I am seeking further testing for autoimmune issues. Sylvie

I had an onslaught of dsyautonomic symptoms beginning this past April, (which are worsening) -- along with really severe depression (which is beginning to lift -- taking light meds). Like many people here, I knew my symptoms were not just "psychological (whatever that means -- given what is common here -- but that is another thread!). My psychiatrist, who is also a neurologist, pressed for more tests, and sure enough, my small-fiber biopsies (thigh and ankle) are both positive (for nerve damage). The neurologist who did the tests could not disguise his surprise and shock when he called: told me I was only his second case with two positives. (Because I was referred by a shrink, he was sure... oh, you know the story!) Not very reassuring. I meet with a dysautonomia specialist (Dr. Reimer, here in NYC) on Thursday. I've been reading as much as I can on the web. Apparently, when two sites are positive it indicates I have sensory neuronopathy (or dorsal root ganglionopathy) as opposed to plain old sensory neuropathy. Is there anyone here with this diagnosis? I understand it can indicate an underlying auto-immune disorder -- like Sjogrens -- or cancer. Yet I had a toxic reaction to medication last fall (antidepressants) -- I can't imagine this is all coincidental. I do not have POTS but I do have high blood pressure, shortness of breath, excessive thirst, dry eyes, skin that has basically turned into that of a 90-year-old in 8 months, hair loss, distal neuropathies....and simply disabling fatigue (worst symptom). Thank you (Is it weird I feel a sense of cheerful relief that this is "real," and when will I crash???) Any experiences/advice would be so welcome! ---Sylvie

Oh, I just noted you don't even have anxiety! There are antidepressants that are prescribed for pain -- Lyrica, Cymbalta, etc. However, if you are like me, these also may cause more trouble than they are worth. You may wish to search this site for pain medications that work well for people with POTS. --S

I suggest you spend some time researching these medications. Wikipedia is an excellent starting point. As noted, Effexor is primarily an antidepressant -- I have taken it for depression and found it was extremely rife with side effects; it is also extremely difficult to discontinue. (As noted above.) I'm not sure why it was prescribed as a first-line treatment for your anxiety. I find clonazapam (Klonopin) to be very effective for anxiety, however it is also highly addictive and also can create terrible withdrawal symptoms when stopped -- these can range from anxiety rebound to seizures. Your doctor is wise to hesitate. I am taking it now, and luckily, I respond to tiny doses (no more than .75 mg total). I split my pills and only use it for insomnia. I don't like taking it, and I am sure it is contributing to my cognitive "fogginess." There are other medications to try for anxiety that may be more appropriate for those who suffer from dysautonomia. Lots written on this site about Neurontin and alpha/beta blockers. Unfortunately, I am also quite depressed now and am searching for an antidepressant with the least likelihood of causing neurological symptoms. I am not having much luck! --Sylvie

How timely -- article in the New York Times yesterday about a worker in a cryotherapy salon (?) managed to freeze herself to death! -S

Hi folks, Again, thank you for all the advice -- just so wonderful to benefit from all your experiences. Met with Dr. yesterday and he threw out the prospect of Neurontin or Amitriptyline (Elavil) for anxiety. I opted for the latter because I am still riding the wave of depression that brought in (or at least was coexistent in timing) of all my dsyautonomic symptoms. However, I am worried about the anticholinergic effects of this drug. ( I have very dry eyes and constipation already: both arrived with other symptoms). I have read it can be good for neuropathic pain (which seems to be increasing daily -- but at a tolerable level) yet I also read it can, in rare cases, cause it. Ideas? ---Thanks again --- Sylvie

Dear folks, Thank you so much for your thoughtful replies. I spoke with my doctor on Friday, and he stated that clonidine is a very bad choice for me: I did have out-of-control HPB last year, and apparently missed doses of this drug can cause this (to the point of death). Not a good choice. I did find a thread on this site that weighs in on guanfacine (vs. clonidine) and reports far fewer side effects with it. I have an appointment on Thursday to further discuss options. Meanwhile, again, I really appreciate your responses -- Sylvie

Dear all, I did a search and see this medication cited in many posts, but I would like to zero-in here. I would like to try Clonidine for severe anxiety; it is so severe the word "anxiety" does not do it justice. It is a severe, almost electric shock-like flooding: it surges and sets off really my painful GERD. Like nothing I have ever experienced before my ANS symptoms set in. Some history: After a toxic reaction to anti-depressants, and a real beginning of a recovery, I experienced a sudden onset of dysautonomic symptoms (last April) for which I am currently undergoing (as I am sure you all know) a painstakingly slow evaluation. I do not have POTS, yet for the past eight months I have been virtually bedridden with severe fatigue. I also have excessive thirst, sweating, dry eyes, hair loss, GERD (test did come back very positive), neuropathies in hands and feet (very sensitive to walking now -- just had small fiber biopsies and am waiting for results) ... etc....etc I do have MVP and have had heart irregularities in the past, but have not yet begun a cardio work-up. Yet I am writing about my simply unbearable anxiety. I do take .75 mg of Klonopin at night (divided into three doses for when I wake up ... I have insomnia too...of course!). I do not wish to take it during the day for I am worried about addiction and dulling. I am seeing a great psychiatrist/neurologist as my primary doc as testing is underway. He had to cancel today, so I thought I would gather some information here. I do have high blood pressure, which is under control now (went up to 240/160 for weeks when I first had the reaction to antidepressants). I tried propanalol recently and it made my insomnia worse and did little for the anxiety. I am not reacting to meds well now. Interestingly, I also cannot bear alcohol in any form now -- I was never a big drinker, but now it feels like I drank poison. Is this common? So I would like to hear from those who are or have taken Clonidine. Is it helpful? Side effects? I know others out there are sensitive to medications -- how about this one? Thanks so much! Sylvie

Hi Lindz (and all) Thank you for your kind response! I was concerned you might think I was not taking your symptoms "seriously" when I wrote about therapy. You appear to be such an open, good-hearted soul! Like you, I simply cannot believe what I am experiencing is NOT tied to dysautonomia. Just too many symptoms to list, and all of them new since April (except GERD which started last fall). I do get respite at night from a small dose of Klonopin --.25 mg (.5 pill broken in half) up to 3x each time I wake (2-3 times/night). I do not feel comfortable taking this drug, so I do not take it at all during the day. I did have a near-normal day on Monday, which was a huge relief. But crashed yesterday and it seems so far, today. I am glad for this site -- it is so level-headed and helpful! ---Sylvie

Dear Lindz, I am also going through a long and frustrating process of disentangling my symptoms while feeling very sick. This is is so hard I know. I have a very confusing presentation: a very long history of depression(yet it was episodic and I was highly functional at all times). I also had surgery for a benign brain tumor in '98 as well as a brain hemorrhage in '02. Beginning about two years ago, I had a toxic reaction to antidepressants that caused Parkinsonism (for over a year -- no one could figure it out), then suddenly last Thanksgiving, I had severe allergic reactions to food and my meds and lethal levels of high blood pressure. Because of the allergic reactions, I was told by a physician substituting for my PCP to go off all antidepressants cold-turkey (horrible advice). So then I had antidepressant "abrupt withdrawal" syndrome too. I was recovering a bit (BP controlled over months, no tremors, etc. -- also no depression at all), but then then got walloped with dysautonomic symptoms and the worst episode of depression of my life this past April. All the more difficult because I could not go on anti-depressants, though I began a very low dose of mirtazipine a few months ago. I have been more or less bedridden since then with severe fatigue, GERD (new since withdrawal) other digestive issues, terrible insomnia (now improving), an anxiety that has defied description, as well as increasing peripheral neuropathies in extremities. I have much brain fog and it takes so much effort just to sit at my computer to type this. I had to take a work leave last year. Is part of this depression (surely -- I am also very much missing working), yet is something else going on? Well, that is why I am writing you now. Maybe. What I am doing about all this: I have finally found a great psychiatrist/neurologist (yes, board-certified in both) who takes all of the symptoms seriously and is acting as what he calls "my quarterback" with the other doctors. I made many, many phone calls to find this guy. He and I agree the line between "physical" and "psychological" is fiction -- especially regarding symptoms involving my autonomic nervous system. His involvement has been invaluable-- my initially skeptical neurologist (who is performing testing) is taking me very seriously: for the QB has called him several times. Dysautonomic symptoms, by definition, tend to blur the boundaries. "Adrenaline surges" or "anxiety," feel the same. Yet, I know depression increases the odds for all sorts of illnesses, and having a chronic illness also increases the odds for depression. I am stuck in the middle with both perhaps, yet I don't yet know. This may or may not be your story too. As for where I'm at: my depression is finally just beginning to lift, yet my autonomic symptoms have not. I just had an EMG, which I knew would be negative (for I have no difficulty with motion or balance), but this test was required (by insurance) before small fiber testing: I had the biopsies for this last week; I really hope they are negative. I also had an endoscopy and a "Bravo" test for GERD -- very positive with a recommendation for surgery. I am getting another opinion, for this doctor did not look at the big picture here. I am now doing CBT for the depression, which is very helpful. I have an appointment with a specialist in dysautonomia for November 5 (took me five months to be scheduled!). I sort of wished to skip this, for my insurance does not cover if, but the QB is insisting. So I am basically suggesting you pursue both routes, if you can, as well. Having "physical" symptoms should not deter you from getting counseling/therapy while you pursue getting the tests you need to rule out or confirm reasons for such things as your neuropathies and such. I know this is all confounding, and made far worse by skeptical physicians who seek the simple answer of "anxiety." As I told the initially skeptical neurologist doing my testing, I would be extremely pleased if I have no measurable nerve damage. As I have told others, it is so hard to do the research on Drs. when ill, but do try and talk on the phone with them (or another medical professional in their office) before you see them. One good doctor can make all the difference. ---Sylvie

Hi Navyblue, Symptoms in this arena are very difficult, but you are exercising well, it is extremely unlikely you have MS. TCP said it best. I do not have POTS or MS (and you should be assured by your MRI) but I do have a resounding cluster of dysautonomic symptoms -- including much numbness, tingling, and pain in my extremities. All of my symptoms (including fatigue, gut and urinary problems, excessive sweating, thirst, etc. etc.) may reflect small fiber neuropathies and I had my skin biopsies just yesterday to try to reach a diagnosis. I have written you before, and I encouraged you to try and get a good advocate to help you, for it seemed like you needed one to negotiate care with your parents. It seems clear you need a good neurologist as well as someone who will help calm your distress in the face of your symptoms. My best to you, Sylvie

Dear TWynnB, I so sympathize with much of your post - it is so difficult to get to these appointments when you are ill and then be disappointed with the doc. As someone wrote on some website I read (my new role -- dysautonomia researcher -- which you have to be with this illness) "all squares are rectangles but not all rectangles are squares," i.e. POTS is the square and dsyautonomia is the rectangle. By definition, POTS is dysautonomia. My case is the reverse: I have dysautonomia, but I do not meet the criteria for POTS. I had my first app't with a new neurologist last week. Because I "failed" the HR and BP testing, he stated I cannot have dysautonomia! Yet I also made an app't for a real expert on dysautonomia on November 9th. The new neurologist proudly told me he was an EMG expert(electromyography -- measures large nerve fiber effects on muscles) and ordered one for me, which I know from my agglomeration of symptoms, will not show anything: (like your hunches about the MRI). He found sensory loss in my feet, (to an extent that freaked me out) but I know my muscles are fine. I now know from his finding, and my own research done after meeting with him, I need specific tests for detection of small fiber neuropathy. I think, from what I read, (with all medical caveats needed here) you may need that EMG! So what are we to do? It is so hard as a patient to appear to know more than the doc even if you do. Here is the core of my advice: a) read, read, read, even if you scare yourself -- you need to ask the right questions and question wrong diagnoses in an intelligent way. Download and use citations if you must!). In the future, try and talk to someone with medical expertise in the office before you make a trip. For example, I talked with a researcher in the office of the the dys. expert and sent them a letter with the chronology of my symptoms. Whether it will help I don't know. c) try to use an advocate if you can. The best part of my ordeal now is that through phoning, I ended up with a great psychiatrist/neurologist who appointed himself as my "quarterback." I will let him deal with the new doc as my advocate to make sure I get the appropriate tests. (My good doc reads all the stuff I download and has respect for what I say -- a miracle in the medical world). Unfortunately, he is an exception; fortunately, he is my advocate. Do you have a physician who can also call to question the findings you find questionable? I am also on disability and I need to have a clear diagnosis in writing. In addition, we both need to at least try to determine the root cause of our symptoms, if there is one. (As more people will tell you here, many people have "secondary" POTS.) Finally, we at least should have a general idea about prognosis and treatment. I wish you well and I hope you can make some headway with getting a proper diagnosis and treatment. --Sylvie

Thanks Sarah and H&S. Well, there was a lot of child's poses in the yoga! I can eat quinoa, but have avoided fiber lately -- so this is good to know. I also appreciate the dosing information @magnesium. I also make smoothies with frozen bananas and sometimes just eat them alone as a sort of dessert. Husband has also been barbecuing and roasting quantities of chicken for me. Still seeking info. on organic sugar-sweetener free liquid meal substitutes and also high-protein/ high nutritional supplements to add to smoothies. Thanks -- S

Hi everyone, Relatively simple query where I would like to lean on those with experience. I would like advice/suggestions about simple foods, recipes, and products for a healthy diet for those with gastric motility issues. I'm off to gastroparesis testing on the 24th (waited two months!). My gastro symptoms began with severe GERD and evolved into little appetite and feeling prematurely full. No vomiting; a bit of nausea. I've lost quite a bit of weight. I also have developed severe constipation; I think this is also a result of being housebound since April. (I have just begun floor-based yoga yesterday and managed 25 minutes today -- a real step for me!) I'm sort of horrified by ingredients in commercial brands of supplements, although I drink one each morning. I read about "Orgain" and wonder about other nutritional supplements I see on the web. I am basically living on almond milk, greek yogurt, frozen pureed squash, packaged tuna (to my dismay), broiled or barbecued plain chicken and crackers with peanut butter. I just got a new "Magic Bullet" blender (and am too fatigued to open the **** box -- so I'm not quite up to complex preparation or cooking. And I was such a cook!), but I welcome smoothie/soup suggestions! I'm also interesting in supplements, although I am cautious about them as I am about meds. Yet just read an article "Coenzyme Q10 helps Verterans Battle Gulf War Illness Symptoms" (UC San Diego Health; Nov. 3, 2014) -- builds mitochrondrial strength. This was a carefully controlled study. I have no idea whether mitochrondrial issues are implicated in my sudden-onset general dysautonomia, but got the supplement immediately (what the heck). I also just ordered Magnesium Citrate -- heard it's good for sleep (big issue with me) and constipation. Thank you in advance for your advice! --Sylvie

Hi everyone, Relatively simple query where I would like to lean on those with experience. I would like advice/suggestions about simple foods, recipes, and products for a healthy diet for those with gastric motility issues. I'm off to gastroparesis testing on the 24th (waited two months!). My gastro symptoms began with severe GERD and evolved into little appetite and feeling prematurely full. No vomiting; a bit of nausea. I've lost quite a bit of weight. I also have developed severe constipation; I think this is also a result of being housebound since April. (I have just begun floor-based yoga yesterday and managed 25 minutes today -- a real step for me!) I'm sort of horrified by ingredients in commercial brands of supplements, although I drink one each morning. I read about "Orgain" and wonder about other nutritional supplements I see on the web. I am basically living on almond milk, greek yogurt, frozen pureed squash, packaged tuna (to my dismay), broiled or barbecued plain chicken and crackers with peanut butter. I just got a new "Magic Bullet" blender (and am too fatigued to open the **** box -- so I'm not quite up to complex preparation or cooking. And I was such a cook!), but I welcome smoothie/soup suggestions! I'm also interesting in supplements, although I am cautious about them as I am about meds. Yet just read an article "Coenzyme Q10 helps Verterans Battle Gulf War Illness Symptoms" (UC San Diego Health; Nov. 3, 2014) -- builds mitochrondrial strength. This was a carefully controlled study. I have no idea whether mitochrondrial issues are implicated in my sudden-onset general dysautonomia, but got the supplement immediately (what the heck). I also just ordered Magnesium Citrate -- heard it's good for sleep (big issue with me) and constipation. Thank you in advance for your advice! --Sylvie

Oh, my best to you p8d! Let's hope this is a short flare (and that your husband begins to understand...). ---Sylvie

PS: P8d: Can you take your husband to your appointment? Perhaps your doctor would be willing to call him? --S

To all, I've learned a lot from this thread and I thank you all! As p8d pointed out, I think with a new diagnosis stress levels are just so high: and these, of course, worsen symptoms. I decided today I just have to lay low for for a while now and try to keep my good phone friendships up. When I feel better, I will do some things like Katybug is doing in sharing face-time. I just don't feel up to it now -- it is a licking wounds kind of thing. Update: my old friend did not call -- and she was the one who originally set up the first phone date. I left a message for her, so ball is in her court. Yet, the guy I met at yoga and I have a phone date for tomorrow! My cousin, who called me for the first time in 15 years a month or so ago, also called again to see how I was. His wife is very ill and I will call her tomorrow. I think Nymph has such good advice, which I think I certainly could have always benefited from: "to learn to accept people for who they are at this moment, and define your relationship from there..." Still learning.... Thanks again, Sylvie

To my new confidants! Statesof: I am lucky I have a husband to whom I can give an hourly update, but I still worry about his stress level. I am concerned you feel you don't have one real confidant (did I interpret this correctly?). I's like to tell you I found a a really nice and positive "talk" therapist (after talking on the phone first with several). Expensive, but it is an hour just for me. My mood has definitely improved after just two sessions, as she speaks so positively about each tiny step I take (i.e. making it to her office) and she refuses to let me talk about my accomplishments in the past tense! My neurologist is also "on call" for me, and has called me at home, which is amazing. Still, it is very different than just having my former variety of friends to choose from. P8d, first of all, you ARE of great help to me because it is so comforting, as you note, to know others who are going through this experience. Our timing is so similar, yet I am still undergoing tests and have no meds yet. I can really commiserate with your experience with friends whom you've helped in the past. I think this is part of the problem when we were once the active, "well" people, and they may still be needy. The flip side is that my highly productive friends are a bit freaked out by all this. As I have also had a few acquaintances step up now, I see the silver lining: I realize I was using some poor criteria to choose friends and now, like you, I really am learning to be appreciative and grateful. HOWEVER: I texted two people today. One was a guy I met once and bonded with months ago when I could still get to "special needs" yoga. He is my age and also had to go on disability (for an immune disorder). Although he wished me a "happy birthday" in July, I was just too sick to get back to him. I also wrote a very dear friend who promised to call last month and then did not (twice!). She says she will today. I feel forgiving. I think all of those here who have responded to me so far are in a way suggesting I have some sort of "truth hierarchy" designed for the levels that each person I speak to can take. My sister and I (only sibling) had a very problematic relationship that has healed since her husband, and then I, became ill. We just have said to each other "we can only do what we can do." A mantra. I am envious of Nymph's support group! However, those that have written me so warmly and eloquently here are becoming one for me! S

Thank you Nymph, Reading over my post this morning it does sound pretty bleak, and I do feel better this morning. I think I just have to get used to the good and bad day thing in all realms: my body and my feelings. I already feel heartened by your kind response. Thank you! I would still love to hear from those who no longer have the stabilizing environment of a workplace. Thanks all, S