Zap

I was given Nortriptyline to deal with chronic migraine in the past. It helped stop the migraines, but it caused me to have symptoms of sympathetic excess, most notably a rise in baseline heart rate of about 30 bpm, increase in my already overactive sweating, and worsened orthostatic intolerance. I had to discontinue due to adverse effects. I was told that the side-effects usually manifest for most (but not all) that try it.

I'm lucky enough to have been able to get an adjustable bed frame to go with my Tempurpedic bed. I generally use the "zero-gravity" position. Had it about a year now, and it definitely helps with both aches and reflux. I've found it easier to fall asleep, too.

I am curious if you have any other symptoms aside from the numb/tingling sensations. I get that on occasion in one leg and I have abnormal (increased) sweating which gets very old. I also have random migratory pain (though it is not always consistent). The reason I ask is my QSART was also irregular and indicated patchy post-ganglionic sudomotor neuropathy. Gabapentin did nothing for me, other than increase appetite, which occurred even at a very small dosage. I have improved somewhat over time, but even still I have random flare ups that cause things to regress. I'd like to think that things become slightly less bad even within the flares. So far the only medication which I've really responded to positively is steroids, but no doctor wants to touch that subject.

Yes - can confirm that I'm another that seems to be sensitive to just about everything. Small doses of drugs act as if they were much larger. Also much more sensitive sense of smell (and therefore bothered more by things). It isn't everyone but there is a group of us that definitely have these shared symptoms.

Well this pretty much correlates with what I've found - nice to see it in print. I had a whole bunch of gastric testing done with abnormal results. Since they can't find an underlying cause for it - it gets lumped with the autonomic problems. Now if we could just find more underlying causes for the autonomic problems maybe we'd be on to something! With enough evidence building up that all these pieces add up to something life-altering maybe I can attempt to (finally) get some type of treatment for it.

I've been barking up this tree for what seems like an eternity. Nobody listens to me or says they have already run a few tests and I don't have any markers whatsoever. I still can't neglect the fact that I felt awesome - was able to get up in the morning like a normal person - did a tune up on a car without incident - stopped aching - no migraines - no crazy sweating problems or temperature sensitivity - less to no GI upset. I'm sure I'm missing something here - but don't you know that the trade-offs aren't worth it? And yeah - that's what doctors have told me - I'm finally going to let them know that being employable and having a life are certainly worth mitigating. Add to this for some reason I have elevated morning cortisol and ACTH. The ACTH was quite a bit elevated - on a good morning where I slept the night before and caused no stress going in for the blood draw. Dexamethasone suppression (had a decent day after it of course - functioned in the morning - etc) caused suppression of the high levels which may be why I feel better when I took it - but since it suppresses we don't have an answer to why the levels are so out of whack (since there is theoretically no ACTH or cortisol producing tumor). Endocrinology has basically said they don't have more to do. Alex - I was given a week of Prednisone also - that caused my sweating to be worse - but unlike most of the other steroids - dexamethasone has practically no mineralocorticoid effects - so it doesn't change water retension and BP. I was also given a "baby dose" of it unlike the prednisone. So either it was too much prednisone or since my BP is always good (no drops when standing detected in numerous trials and always a normal level) that may be part of it too. Didn't have a BP cuff when I was given the prednisone so it may have elevated BP levels and had unpleasant side effects from that. I'm also sensitive to ALL meds so that may have been a part too. That's the really sad thing is I feel like I don't need that much to feel better so that begs the question of what it is doing. Even 1 mg - 1 time per day - for the suppression test resulted in a substantial improvement of symptoms.

That's really interesting - now I'm curious what the reasoning was for such a recommendation and why it never came to pass. If the BP was low enough it may have needed further boosting from the Midodrine than what mineralocorticoid effects would arise from HC. I feel that at times it would be valuable to have something that I could use as needed even if it wasn't all the time. Definitely experience bouts of symptoms. I know that we discussed your protocol at one point in the past - the other article I found previously I was actually able to speak to the doctor that wrote it via email. He said they would use a period of a few months during which the steroids were tapered until they stopped using them all together. This was to treat SFN of an inflammatory nature that they couldn't find another underlying cause.

Interesting - maybe he's brought more testing as part of his experience. I knew he was well regarded by those who were lucky enough to be able to see him. I attempted to make an appointment with him when he was very new in town but I was declined by scheduling since I had seen another specialist already. At any rate it may be of interest to others that Dr Chelimsky is going to be speaking during a 2 hour Autonomic Support Group session at Froedert in December (on the 4th from 6-8 PM). I was planning to possibly show up and see what his topics are for the evening. Maybe there will even be some Q&A at the end if we're lucky.

I keep forwarding my neurologist these articles - maybe in a few months it will make for two of us! Did/do you have BP issues at all? In my few encounters I found that dexamethasone worked better for me (which doesn't have significant mineralcorticoid effects) - but I would suspect HC or Prednisone may help more for those that have low BP since it will boost blood volume to some degree.

ABSTRACT.There is controversy regarding the incidence and significance of hypothalamic-pituitary-adrenal (HPA) axis dysfunction in chronic fatigue syndrome (CFS) and fibromyalgia (FM). Studies that utilize central acting stimulation tests, including corticotropin-releasing hormone (CRH), insulin stress testing (IST), d-fenfluramine, ipsapirone, interleukin-6 (IL-6) and metyrapone testing, have demonstrated that HPA axis dysfunction of central origin is present in a majority of these patients. However, ACTH stimulation tests and baseline cortisol testing lack the sensitivity to detect this central dysfunction and have resulted in controversy and confusion regarding the incidence of HPA axis dysfunction in these conditions and the appropriateness of treatment. While both CFS and FM patients are shown to have central HPA dysfunction, the dysfunction in CFS is at the pituitary-hypothalamic level while the dysfunction in FM is more related to dysfunction at the hypothalamic and supra-hypothalamic levels. Because treatment with low physiologic doses of cortisol (<15 mg) has been shown to be safe and effective and routine dynamic ACTH testing does not have adequate diagnostic sensitivity, it is reasonable to give a therapeutic trial of physiologic doses of cortisol to the majority of patients with CFS and FM, especially to those who have symptoms that are consistent with adrenal dysfunction, have low blood pressure or have baseline cortisol levels in the low or low-normal range. KEYWORDS.HPA axis dysfunction, hypothalamic-pituitary-adrenalaxis, chronic fatigue syndrome, fibromyalgia, CFIDS, cortisol, hydrocortisone The article is FAR too long to print here but check out the full PDF: http://www.cfids-cab.org/rc/Holtorf.pdf Multiple studies using steroids to re-align the HPA axis without using so much that it causes Cushing's. I keep finding these articles that explain how steroids may have made such an improvement in my well-being - will be interesting to see what I am told come November when my next appointment rolls around - been forwarding these to the Dr's office!

Another WI - Milwaukee specialist is Dr. Rose Dotson at Aurora. She has past experience from Mayo and is setting up an autonomic lab (which may actually be up and running by now). She is VERY thorough with labs and if there is an odd but treatable problem causing dysautonomia she will definitely try to find it. She is also responsive to her patients and will hear them out and respect their medication limits knowing that side-effects can often be a deterrent. A unique experience to most of the doctors I've seen over the years. I've never seen Dr Chelimsky but I have had other experiences at Froedert just prior to his arrival there. As at the time I was at Froedert there was a VERY strong stress on deconditioning as the be-all-end-all cause, they were unfortunately not very pleasant (aside from the initial autonomic testing done from an outside referral - which led to diagnosis). - which resulted in my finding Dr Doson via referral. That said - the autonomic lab is certainly capable of diagnosis and operates similarly to Mayo's.

Some universities require medical coverage to be enrolled as a traditional full-time student. If you don't have coverage from a parent then you are forced to purchase their insurance plan. It may be that she was required to have this plan and was told it would cover her medication (which she most likely - prudently - asked before enrolling).

Frequent infections should in theory lead to immune testing - if the doctors are watching the incidence. Have you had Immunoglobulins checked? This is one of the ways to test for immunodeficiency. Low Ig can be a gateway to IVIg - which is one of the ways to medically work at low immunity - but only if there are definitive low results. A regular blood panel will show white cell counts - which can also be another indicator of immune related issues - but it can also just indicate a current infection. An Immune Complex Panel tests for things like autoimmunity - at least the more prevalent types like Rheumatoid Arthritis, Lupus, Sjogren's, scleroderma. Also have to mention the natural immune modulators too - garlic and oil of oregano are two BIG ones. Using these types of things will help a weakened immune system. One other comment - your gut bacteria ARE your immune system - so keep in mind that imbalances there can also be part of the cause for immune issues.

I found this through some random research and was shocked. This possibly explains why positively I responded to steroids in the past. I followed up further by writing one of the doctors to get treatment protocol information. I'd be happy to discuss what he talked about if there is any interest. It basically involves a multi-month course of steroids that are eventually tapered. The basic idea was that they see two SFN case types - many genetic which won't respond to steroids OR other idiopathic, related to inflammation, and respond to steroids. For the genetic type cases, I have researched and found a novel medication that may provide a quality-of-life improvement without the cardiac side effects. This is especially important, as many with SFN don't respond well to existing meds like Gabapentin and Pregabalin. I think we will see into the future that SFN is one possible root cause of POTS / dysautonomia. Maybe we can also see at least some cases that respond to this few-month treatment, and have hope for partial/substantial remission of symptoms. I know at least one other forum member has had this response. Here's the PubMed link (http://www.ncbi.nlm.nih.gov/pubmed/16519781) J Peripher Nerv Syst. 2006 Mar;11(1):47-52.Acute steroid responsive small-fiber sensory neuropathy: a new entity?Dabby R, Gilad R, Sadeh M, Lampl Y, Watemberg N.SourceDepartment of Neurology, Wolfson Medical Center, Holon, Israel. dabbyr@netvision.net.ildabbyr@netvision.net.il AbstractSmall-fiber neuropathy is often idiopathic and commonly follows a chronic course. Treatment is often effective in treating the core symptom of pain, but it has no effect on the pathologic process. We describe four patients with acute small-fiber neuropathy who responded dramatically to steroid therapy. All patients had acute onset neuropathic pain, normal nerve conduction studies, and evidence of small-fiber dysfunction in quantitative sensory testing and skin biopsy. Symptoms were distal and symmetrical in three patients and generalized in one patient. In two cases, the neuropathy presented as an erythromelalgia-like syndrome. Marked clinical improvement occurred 1-2 weeks after oral prednisone therapy was initiated. Three patients remained symptom free, and one patient experienced recurrence of neuropathy after prednisone was tapered.

I do agree that the term is used very loosely (incorrectly) both in the public context and even amongst some medical-types. Preservation-type behaviors or borderline paranoia tend to both get lumped incorrectly as "OCD" because of the external appearance of repetition in behavior.

I recently did a 12-day juice fast, which helped a lot with some of my symptoms - sadly it isn't exactly sustainable. I guess I'm not the only one with unexplainable GI symptoms. Recent testing shows some issues, but now the GI doctor seems to have blown it off. (Gastric dumping, esophageal dysmotility). I had thought about doing a regimen again as it helped drop some of the excess weight that was gained from crummy medications that didn't even help enough to be worth it. It is interesting that abstaining from most foods seems to help - I might have some food allergy testing done at some point, but unless it says I am allergic to everything - I can say that I have done enough elimination diets to find all major sources of allergy, and come up without any answers from all that frustration.

Interesting - so you're saying that the complement system was elevated rather than decreased. That can be indicative of an ongoing battle fighting off a pathogen. Might be worth following that further, as it was sometimes used to Dx infection. It is not as commonly used these days, as ELISA and PCR testing have now provided more accurate/detailed methods for this. But it certainly raises curiosity about a persistent infection that is causing heightened immune activity and possibly causing other symptoms. Wouldn't it be great to find out this is all based on some type of infection that can possibly be cleared?! Ultimately, there has to be SOME type of cause, and when all other markers keep coming up negative, it has to be something!

Issie just beat me to the punch! I was just going to say that Wikipedia mentions: "C4d has been identified as a biomarker for systemic lupus erythematosus.[2]" "Mutations in this gene cause complement component 5 deficiency, a disease where patients show a propensity for severe recurrent infections. Defects in this gene have also been linked to a susceptibility to liver fibrosis and to rheumatoid arthritis.[1]" So, this is interesting considering I was going to possibly ask about complement testing at some point. It seems to confirm a link to autoimmunity. At some point, the links for at least a subgroup of dysautonomia patients having autoimmunity is going to become too loud to be ignored. Maybe it will finally lead to efficacious treatment! We can hope, anyway.

As a random note, I do personally feel that dysautonomia wreaks its havoc on many of us, making us sensitive to avoiding disaster, due to our inability to deal with stress. It may in some cases be a tendency toward self-preservation moreso than anything else, as we know it becomes easier to avoid stress than to encounter it, so a protective behavior grows out of this....

Funny, that is, that I've not so far needed a break from the turmeric, but maybe I have finally gotten to the point where I do. I've been theoretically diagnosed based on the fact that I have abnormal QSART, TST sweating response, and slightly diminished tactile test response in the feet. No biopsy so far, but it is fairly certain - my neuro says that it isn't worth the pain of the biopsy (which used to get ordered routinely in the past) as it doesn't change the course of action. I'd like the genetic tests as 23andMe isn't currently testing most SNPs. I will definitely not stop the search, and I am still suspicious that my cause is inflammatory/immune as my response to steroids is pretty indicative. I am to see an Endocrinologist soon, and maybe we'll find HPA-axis malfunction, which could explain some of these things. The recent esophageal and gastric emptying tests show malfunction, which honestly backs up the SFN theory anyway. ALSO, I discovered yesterday that the Benfotiamine I was taking was such a miniscule dose that it wasn't even on the charts for the survey being done for CFS based on the Italian study. Upped to taking 6!! capsules at a time and all of a sudden after I was taking just one, twice a day, for over a month, that it is finally doing something!! It gave me quite a bit more energy than I previously had. Just have to see whether it drops out or works long-term, but it looks promising. Felt a lot more like myself, for a change (especially as of late). Of interesting note, regular B1 didn't seem to have the same effects. Still chasing the SFN issue, regardless, as it seems to be the closest thing to a cause I've found so far.

I feel that I'm fighting this battle given my immune response to steroids. No positive tests, and even told I have nothing, but that doesn't guarantee that something is below the threshold. Hopefully some day there will be a better way to detect immune dysfunction in its earlier stages.

It is unfortunate that when this cascade of symptoms took most of my life away, I already was following a very strict vegan diet, without much grain of any type. The problem is no matter what I do that the issues tend to persist. The funny thing is my NE testing was normal - both laying and standing. I thought for sure that it would be elevated, but it wasn't so. I tried the Sudafed, but it wasn't effective at all for me. Again, it was surprising. But I don't have the blood pressure disturbances that most do. My etiology is a bit bizarre, really. I would ideally like to do the SFN genetic test. That would at least possibly determine whether that is a defining factor here. Even the turmeric seems to not be helping me as much as it used to, sadly. I may be doing a juice fast again, so we'll have to see what I find. Speaking up about it (insanely) has now convinced the doctor that I'm allergic to something that is causing the migraines. Unfortunately, I'm now starting to think that it is more related to the possible dumping discovered in the gastric tests than any particular food, as I've never in all the elimination dieting I've done over the years been able to find a trigger for the migraines. I've also discovered a doctor that believes in functional medicine and that many ranges for tests are inaccurate and too wide. I'm possibly thinking about having him evaluate any endocrine tests I run, as there could be a "mild" deficiency. On that note, I think that most doctors consider anything not life threatening "mild" and blow it off. I'm sick of being dismissed when others on this forum have had WAY more attempts at finding a treatment to ameliorate even some of the symptoms and improve quality of life.

Wow, all my appointments have been a total bust lately - I'm being sent to an Endocrinologist for abnormal acylcarnitite profile and based on my fasting causing remission of some symptoms. There was too much concern over orthostatic issues (despite that my BP doesn't drop) to try my experimental treatment right this instant, though I asked for something to help control the migraines. Given my GI test results (stomach emptying EARLY - seems incorrect due to my other GI issues, but could be possible) and esophageal transit delays / sphincter dysfunction I now have to see a GI specialist. The gastric dumping could account for a number of my autonomic symptoms.... but I've never had a bypass or anything, just lucky I guess to have this horrible problem in spite of that. But maybe blood sugar flux could be causing the migraines and symptoms if fasting makes me a bit better.... seems like a few connections are converging for a change. I wish I could get the testing to rule this problem in or out. Another article I found implicates low NE in some of these issues too. A few new things to explore, but still no reprieve from all the symptoms at this point.

Okay, I've got my neurologist appointment this week. I'm going to be pressing with this research information in order to attempt a novel drug therapy. The doctors can't have it both ways - if it is truly idiopathic, then research is showing sodium channel problems. That is grounds for attempted treatment with a drug that would possibly be indicated for POTS from many angles. At least from my research, which I know can be somewhat misleading as to real world efficacy, this would theoretically supplant common therapies like beta-blockers for a number of reasons, not limited to the fact that it doesn't cause BP drop. At any rate, the biggest claim to fame is modulation of the NaV 1.7 and NaV 1.8 channels, those implicated in idiopathic small fiber neuropathy. Given the immense amount of pain I've been in lately, I'm certainly open to trying something to help. Unlike most other existent meds that are believed to modulate these sodium channels, there appears to be a LOT less side effects implicated from the data. I'll post a follow up here again at the end of the week after my discussions at my appointment. Hopefully the test-run will be approved and we can see if there is any real world efficacy.

Wow, I've been having digestive problems for years - I've never been given anything, and am just now finally having some of the tests to rule-out everything else so it is a semi-formal IBS diagnosis. I believe I've had at least a mild form of dysautonomia since my teens, with the migraines and bowel problems. I seriously think that all these problems are linked together, which considering the numbers of people out there with migraine, IBS, fibro, etc. one would think more research would be going on, as any attempt to treat things would be grossly successful in a profit sense (and even more-so if it ended up being remotely effective treatment). My present theories on this (especially from a digestive standpoint) are linked to bowel bacterial balance, a subject that is just beginning to come to light in research circles.