Sylvie33

I just read a bit about this. It is interesting to see it primarily affects younger, thin women....a subgroup for POTS. Yet, as Lewis wrote, it appears cardinal symptoms are gastroparesis and weight loss, as well as a "bruit" (defining noise) that can be detected. I hope this is a path to recovery for some readers.

Best of luck to you. I am also going to add PT to my treatment. I have a yoga teacher/masseuse come to my home..but my doc thinks the work and the social interaction of PT will be beneficial.

Hi Rich, I'm not aware of the Vanderbilt research: I know only about the implants. My error. Do you have a link to it? I just am concerned about quick-fix/dubious treatments advertised on the web which have no research to back their claims. There seems to be a lot of discussion about such things on this site this week. I feel people with illnesses like ours, which are so difficult to diagnose and treat, make us vulnerable to charlatans.

Katie: who asked for any of this? Yet I appreciate your wisdom..... States of: top of my head....worsens (like everything for me) as the day goes on.... I'm now going to try to look up why symptoms worsen at night....especially true for neuropathic pain....

Hey Debbie, I'm going to PM you about my saga, but I want to say here that I had small fiber biopsies -- ankle and thigh -- and they both were positive. This is what I mean about "visible nerve death." I also just went to the ophthalmologist, and he sees a bit of nerve damage in my eyes -- which threw me! Anyway, I will tell you more.... Sylvie

Hi Debbie, Never apologize for jabbering to me, the queen of blathering. Anyway, SSI might find dysautonomia difficult to understand....it does sound like you have your paperwork in order. You may wish to augment it with information from DINET. As for your anxiety....well, as someone seasoned in depression and anxiety and now someone with visible nerve death, I fail to see the difference between "anxiety" and "adrenaline surges." It's a sore point with me because I believe "mental illness" is just stigmatized neurological disease. It is no accident that for me my dysautonomia rode in on a wave of depression (and no coincidence neurological disorders like MS and Parkinson's are often accompanied by severe depression). See, now I am going on... Anxiety with dysautonomia is like anxiety squared. So don't downplay it to SSI....they are to be commended for recognizing "mental issues" like depression and anxiety as potentially disabling in themselves....if you like, you can present it as "comorbid;" it's the truth. I was an extremely high functioning depressive (38 years in my field, doctorate at age 41), but dysautonomia did me in...for the near future and maybe more....Seems like you have a similar case.

I wrote "etologies" -- not methodologies ... weird autocorrect.

I second MtoG. With our odd methodologies and symptoms, we are hard to diagnose and treat and easy prey....just having someone listen to all symptoms is alluring (I had a list of 23 last summer...just a tad shorter now).

Hi Faye, Yes, you are weighing it out here. This is good! Here I am on a SSRI again, with my history. The bottom line for me is that I needed some sort of medical intervention after 6+ months of suffering. I do not feel comfortable with nortriptyline, but I see real improvement. As noted, I halved my dose last week, but will not titrate further yet. You have experienced improvement too. It also appears you don't have side effects other than feeling a bit "emotional." If you are uneasy, consider going on 10mg. See what happens.... it may be a high enough dose for the spasms and low enough to reassure you. I've made all my changes with my doctor.... It's not a "clean" drug, but it does seem efficacious at a low dose, which was not true of newer SSRIs for me. Also a bonus that it helps you sleep!

I take just 10 mg./day. Read history below and you will see why. Yet, it knocked out my afternoon adrenaline/anxiety surge and I am sure it contributed to beating back the worst episode of depression in my life (with onset of dysautonomic symptoms this past April). Negatives: palpably increases my tachycardia and SOB when I take it in the morning. I was told it would help with insomnia, yet it worsened it (so I don't take it at night). Also further dries my eyes and mouth, (anticholinergic effects). Decreased it from 20 mg for these reasons. Neuropathic pain increased when I did. It also helped me with bladder emptying before I lowered the dose...Go figure. Yet, as many of us know here, we might react to meds in highly unpredictable ways (look at my history ...iatrogenic dysautonomia....I'm scared of everything). But you are also on a low dose...If it is working for you, that's great.

Ditto. In addition I am losing my hair (my digestion has improved, so I'm waiting for this to stop). No dice. My scalp sensitivity, like all my sensory issues, worsens as the day goes on..... Katybug's, you are a font of knowledge...do you (or anyone else) know of anything helpful to address this? Thanks..

It might..won't hurt to try. CBT is now at the center of a controversy in Britain, where a recent study paired it with "graduated exercise" as a "successful" treatment for CFS/ME. I've read the statistics were flawed and the duration of the study too short for optimistic conclusions...Yet there were also complaints like mine: that goal-setting is difficult with unpredictable illnesses. It's great your son is not depressed, and as I said, who knows, he might respond to CBT. It's not a med, and has proven to be effective for many disorders. I gave it a good shot so I can't tell you not to try! As I mentioned, it may be uplifting to have someone else regularly rooting for your son, as well as for him to have a private place to discuss things like missing school... You are clearly a very kind mom!

Hi Debbie, My interview brought up a lot of emotions for me....I did not anticipate this...so I do not wish to alarm you, but I am focusing on this aspect here so you are more prepared than I was. I had two interviews back in April: for SSI and for my employment insurer. The SSI one was very perfunctory...very young, inexperienced person...it was over very quickly (and I still haven't heard anything). I'm lucky I'm not depending on it. Everything I get from them will be subtracted from my employer insurance, so I have not called, even though my diagnosis has changed. However, the employer insurance interview took two hours. I wish to tell you I did find it upsetting, for it was during this very detailed interview process I realized I am truly disabled...since then I have had to adjust to this now undeniable fact, which includes I will most likely not return to my career. This is very difficult. Luckily, the organization is very supportive. So, all I can say is just be calm, open, and honest...it appears you have the documentation...and be prepared to do a lot of follow-up with SSI. As for the emotional aspects....You may be in a very different and more accepting place than I was, for I had only been sick for a year. Until about March I thought I would recover completely. The interviews occurred just was my symptoms were becoming severe. ("Good" news for getting disability, but not good news for me!) Just like relief at a diagnosis, but then there is the gamut of emotions in dealing with it. So, I suggest you might wish to rally support around yourself for this new step: you might also need help in getting a timely response from SSI. Good luck with this. Sylvie

Hi all, The Dr. Driscolls are optometrists....

PS... My neurologist nixed tianeptine.....thought he would. Supplement world is fraught...

Hi RM, I tried Cognitive Behavioral Therapy (CBT) for about six months to address my depression and fatigue. I am assuming your son's brain fog is accompanied by fatigue. Of course depression also magnifies both ---is this an issue for him? CBT is expensive, but I found a therapist in training whom I liked very much. The steps involved tracking feelings and activities, and then gradually moving to increasing the latter. I met with her 2x/wk. I enjoyed our talk sessions, but I was basically too sick and depressed to meet goals (even baby steps). I also felt that although my therapist was supportive, she did not have the insight/experience to effectively address where I am in life right now (having to give up my profession, etc.). Interestingly, my depression and brain fog are now lifting....I attribute this to time as well as 3x weekly private yoga/bodywork sessions. I am also seeing a wise psychologist for basic therapy. I am still very fatigued...but my strength is improving..... I think any sort of therapy/counseling with someone who understands the ramifications of chronic illness would be helpful. Perhaps CBT would be appropriate for your son. My basic suggestion is to have an "interview" session with the therapist to see if there is a match (looking at personality as well as therapeutic approach). The key is that your son is on board with the idea of therapy and that he clicks with the therapist. Hope this is helpful.... Sylvie

Just as a follow-up to MTG... Really good piece on supplements on the sciencebasedmedicine.org site right now. Australian researchers analyzed 50+ Chinese herbs and found everything from endangered species (Siberian tigers) to neurotoxins in them. Only 1/5 were what they were purported to be...

Hi, This apparently is another hot "internet disease" used to lure people into costly, odd diagnostic procedures and supplements. Please see sciencebasedmedicine.org, ("Fatigued by a Fake Disease")...this is a a very good site, or "quackwatch.com," ("Be Wary of Fad Diagnoses"). LA Times 9/15/10, also has a good article. All easily googled. Yes the HPA (hypothalamic/pituitary/adrenal) axis is involved in our disorders....but the focus on adrenal glands is way too simple.... Also, not to be confused with "adrenal insufficiency," a real disorder which results from damage to the glands.... The two sites I mentioned above are my go-to sites as I research practices and supplements, for I, like everyone here I guess, would love to find things to help me... I just wish to see the research! BTW, I am really open to new ideas (if they are scientifically-supported)...I just read a lot about two chemicals that might be helpful for fatigue ("sickness behavior") linked to dysautonomia and CFS/ME....tianeptine (a prescription antidepressant used everywhere but the U.S.; it is sold by Canadian pharmacies who will take US prescriptions... ) and sulbutiamine, (marketed as a supplement). Meet with neurologist today to discuss...I'll post when I know more... Sylvie

Dear ks42. You have a very convincing case study, and you are very level-headed about this (especially given the clamor on the web, which may be deserved...). My (pretty severe) dysautonomia was apparently caused by drug toxicity (antidepressants) and subsequent abrupt withdrawal --- even my big cheese dysautonomia specialist thinks this is the case. This is next to nothing in the literature addressing this either. A lot of the research on neurotoxicity of environmental factors and drugs is in its infancy. Consensus is out there that research funding is limited because of liability issues down the line. It is interesting the only data I found supporting my experience are from Italy! Yet when funds are finally released, findings are interesting. I read that most cases of Gulf War Illness (which often includes dysautonomic symptoms) --is in fact caused by drugs administered to servicepeople to undermine the effects of nerve gas. Apparently, about 25% of the population (and all of those with GWI, none without it) have a gene that rendered this medication neurotoxic. (Not to say that environmental factors in the gulf were not also neurotoxic). Makes me wish I could have a gene study....but goes to show what can be found with the right science and science funding.... Until then, the best news I can share with you is I was told dysautonomia due to toxicity can be alleviated and even reversed with time once the toxins are removed. My doctor did stress it is a slow process. I appreciate how hard you have worked to understand your illness....have you thought of writing up your experience for a wider audience? Meanwhile, I hope all three of you improve soon! Sylvie

Hi, Caveat: I am not a scientist and I am a dysautonomia newbie, but my endless bedtime is used researching this stuff... _____________ "Neuroplasticity" refers to any changes occurring in the brain from the level of neurons to entire areas (say with injury). Wikipedia explains it well. It is a process....not a "treatment," which occurs continuously. Behavior can affect brain neuroplasticity: this is why, for instance, cognitive behavior therapy has proven helpful for targeted behavioral disorders. Meditation also can change brain processes for the better. The proponents of this product are apparently using this idea. That being said, dysautonomia is an extremely complex illness involving neurons and neural pathways, areas of the brain and specific brain structures, vital organs, hormones, and various cells and cell structures in our brains and throughout our bodies.... (why most of here have head-to-toe symptoms). Secondary dysautonomia is even more complicated, for immunological and other systems are involved. Right now there really is no good research on why dysautonomia occurs. This lack of knowledge about root causes is why "treatments" only address symptom-reduction, and if someone is "cured," no one really knows why. (An exception is the use of certain infusions, like IVIG, to mitigate certain autoimmune disorders, which may,in turn, alleviate some dysautonomic symptoms). Although neuroplasticity is essential for healing, this product is touted as on that "retrains" neurons. Well, which ones and how? Hmmmm. Perhaps it makes users feel better, as does (good) therapy and meditation. Meditation is free! Bottom line, unfortunately, no easy answers or cures. Sylvie

Why not go on e-bay or etsy and find a very cool cane? You can see what length you need at a drug store, and/or if you know someone handy they can adapt it for you. Most importantly, you do not want to risk a concussion! I'm going to take a peek now myself..... S

Hey Lindz, Sorry I rattled on so. But try hard to stay in the present. Two months ago my digestive system was frozen: now totally changed. My strength is increasing. Most importantly, my depression is lifting: which is essential for dealing with the other stuff -- I have far less fear now and I'm doing my best to avoid self-diagnosis of worst case scenarios. Not to say I don't freak, but it is not my overriding state. S

Hi Lindz, I've written you before! It gets better! It does...I never would have believed it even one month ago. I ain't out of the woods, but here my story... My myriad of dysautonomia symptoms rode in on a huge wave of depression eight months ago. Not to mention anxiety! I was so freaked out I was numb -- beyond crying. I was especially grief- stricken about my job. But I am much better now emotionally. Although I've had a bit of improvement physically, I am still mostly bedbound. Recently got back two positive biopsies for small fiber neuropathy. Scary but validating. So here is what helped me: - great partner who flipped into a caring mode --- before this I was the big-time caretaker sort. - marking endless calls and landing a great doctor who helps with the others. You can tell you found someone good if they talk on the phone with you before an appointment. Yet my team is still incomplete, and two neurologists were washouts. - said good Dr. is a psychiatrist and a neurologist, so we converse in depth about my dysautonomia and my depression. I can freak out about symptoms with him. I try not to at home. I meet with him 1-2 hours 2x/month. Takes my bad insurance! Very comforting and healing. -I tried CBT therapy because I read it helps with chronic fatigue. Found out it did not work with me (a lot opposition on CFS forums too. ) Involves a lot of goal setting which is impossible with this illness. Switched to an older, very wise therapist. She simultaneously gives me permission to be sick while believing I will get better. 1x/wk. --A few good friends. My best friend of 30+ years has nursed many friends with HIV and lost more. He lives in another city and I haven't seen him since March. We talk at least once a week and I feel like he takes me exploring each time: we've gotten so much closer. (I've also lost many friends. I grieved over this too, but I get it. Illness and depression is not a welcoming situation: I've learned a lot about relationships. Not easy.) -British drama and mystery series. Watch them when I can't sleep --they often knock me out. Can repeat over and over! -light yoga followed by massage (great grown kid picking up the tab). Started 4 weeks ago. This NYC cynic is sold on the notion of "laying on the hands" to heal. --grown kid. He is so sweet-- I don't want him to have a depressed, sick mother. He just moved across-country and I want to visit. Big motivator. -Getting out and talking to people. Even if it is just in Dr. offices. Just pretend you're not so sick. Stick with strangers if you feel too miserable to really socialize. I still don't feel well enough to hang out with people, but I made it through Thanksgiving (easy group). -Drugs. My doses are baby doses since I had serotonin syndrome -which kicked off the dysautonomia. I take a total of .75 Klonopin in three doses for sleep. Also 15. mg.of mirtazipine and 10 mg. Nortriptyline for depression. I also take a slew of supplements, but can't tell if they as doing anything. All of this is an ordeal, no doubt about it. It is a wonky, unpredictable, really unpleasant illness that is really difficult to diagnose and treat. Depression/anxiety are so difficult even when otherwise healthy. I think it is really important to deal with these ....over everything else. Please try and have patience and be kind to yourself....try to find one good doctor, a counselor/therapist, and one good friend. If you are religious, lucky you, all sorts of resources. You found this site...I remember you from earlier posts, you are smart and you obviously have strength! All my best, Sylvie

Hi Rich, I thync you should ignore the ads. Please read my post to Evergreen re: "DVD's for POTS." MomtoGuiliana also posted DINET's statement emphasizing evidence-based treatment in this thread. I get the pop-up for that stimulator every time I enter the word "dysautonomia" or "depression" in a search. Drives me nuts. If only it was that easy! There is also some doctor touting vagus nerve surgery for dysautonomia in pop-up ads. Read stuff debunking him. What a way to advertise! "Real" vagus nerve stimulation (VSN --used for epilepsy and treatment-resistant depression), requires an implanted device. Research funding was recently cut for depression because of unconvincing outcomes. Yet a brief search I did today notes effective trials for VNS stimulation for heart disease: they are effectively creating autonomic stability. Still experimental, but might be cause for hope. In any event, it is not an easy procedure (the implant can cause a lethal stroke) and it seems far away from us now. PS: I really appreciate your posts -- you are working so hard to understand this illness and get well. Very inspiring. S

Dear Lisa, How wise you are, and what good research you have done to wind up on this site! I am now shocked about how willingly I ingested a ridiculously complex cocktail. I (obviously) had far too much faith in my psychiatrist. Yet when I had severe neurological side effects for about 18 months, neither she nor a neurologist questioned the drugs. Much discussion about and testing for a brain tumor (I collapsed a day after I got my clean MRI's back!). Even now, the prominent dysautonomia specialist I saw last month attributed my current, completely disabling symptoms to the abrupt withdrawal only. I'm not convinced. Lots of doctors very invested in prescribing powerful drugs whose workings remain obscure, and they don't want to dis them. You were on a high dose too! It may well be that everything except perhaps your excessive sleepiness may disappear. As you stated, the tapering process, even if gradual and well-supervised, can cause disturbing withdrawal symptoms.....hopefully this is the heart of your symptoms. Best of luck to you! Sylvie