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Zap

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About Zap

  • Rank
    Advanced Member
  • Birthday 12/30/1982

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  • Gender
    Male
  • Location
    Wisconsin
  • Interests
    Music, Carillons, Amateur Radio, Natural Healing, Herbs, Cooking, Cars, and more!

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  1. Larry

    How are you doing now? I have similar symptoms and diagnosis as you?

    1. Zap

      Zap

      Hi,

      Presently I'm in a bit of a relapse symptom-wise.  I've never been close to normal, but was at least doing better with respect to pain and fatigue.  I've been following a diet regimen throughout 2017, and relaxed a bit during the holidays which I'm sure didn't help.  Things were also stressful, which also worsens my symptoms, too.

      Locally we had a fundraiser to bring greater awareness for dysautonomia, and there is going to be a research study that will test patients for auto-antibodies.  I'm expecting to find out more this month, and potentially be part of the study.  A positive test may be able to result in immunotherapy (IVIg), which holds a lot of promise toward improving day-to-day life and symptoms.

      In the interim, I'm trying to get back to where I was before, but I'm still limited in my daily activities either way.  Hope this helps, and I'd certainly be interested to find out more about what you're dealing with.

      Regards,
      Corey

  2. 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.
  3. 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.
  4. 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.
  5. 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.
  6. 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.
  7. 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.
  8. 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.
  9. 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.
  10. 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.
  11. 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!
  12. 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.
  13. 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).
  14. 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.
  15. 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.
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