Sylvie33

Best to you and the girls!

Hi, I just responded to Faye on this topic, and Katy, I wanted to thank you for your link to the article on Interstitial Cystitis....I have this too, and a correct diagnosis can save a lot of grief (let alone use of antibiotics and anti-yeast meds!) Testing is a tad complicated, but we're already used to that (and diagnosis does not mean a UTI might still be present). Also, AZO is wondrous for pain.

Hi Faye, I'm sorry you are dealing with this. Like many women with dysautonomia, I'm well-acqainted with UTIs and I take Bactrim -- a sulphur amalgam. (It can also be used by women at a low dose prophylactically before sex.) Yet, I'm writing because I would like to stress here that Cipro and other antibiotics in the fluoroquinolone class (including Levaquin and others) can be neurotoxic and cause sensory and autonomic neuropathies. There is a lot written on this on the web. Also, I think PPIs, like Prilosec and Nexium, can also cause dysautonomia. This is important information, for both bladder issues and GERD are common among those of us with autonomic issues. By the way, I noted another poster talked about the UTI/yeast infection cycle. Antibiotics can cause yeast infections, so imo it's probably a good idea to use an OTC product like Monostat on your last day of antibiotic use. Hope this isn't redundant given all the great info. on this site!

Dear Ancy, Thinking of you and wishing you the best. ? Sylvie

I just went to Amazon to order the Scratch electrolyte mix and read it has calcium...can this be a problem for those of us with motility issues? Thanx.

I'm in exactly the same boat (bed) since the acute onset of my symptoms 11 months ago. This post is so timely. I just now wrote my doctor about this very issue of the vicious cycle: my symptoms are keeping me horizontal, which is, I know, further deconditioning me....which is exacerbating my symptoms...especially POTS and OI. Yet, Goodr, I would encourage you to eat .. if it's just Ensure or sipping a smoothie during the day. We need energy to move, which I try to do...even though its mostly unpleasant. For the past six months I've been moving for at least an hour a day, with breaks. This includes light yoga 3X/week and getting to at least one appointment or doing a light errand 2X/wk. If I have to get to a doctor's appointment by public transit I do it...although it can knock me out the next day. I am finally getting little windows of pleasure from some of this. My great inspiration is my pen pal. This is her 19th year with severe dysautonomia (Sjogren's). We write daily and she makes me report (only she's allowed to push me ...she's going through **** and pushes herself). We somehow fell into this. I try to sit at my desk for these letters. So these are things to contemplate. You can see you are not alone in this struggle...thanks for bringing this up (so to speak!).

Yes TCP, We apparently have similar stories. CC does test for MCAS. ...but I have to apply and be accepted to be seen by them....just learned this today. I was surprised, at first, not to see people weighing in here, but I just found a 2013 thread...lots of info. Thanks for your observation! Sylvie

Dear folks, I've begun the process to go to the Cleveland Clinic. I'm searching for additional testing and a comprehensive treatment plan addressing all my symptoms. I have many dysautonomic symptoms, sensory neuropathy, depression, and perhaps some characteristics of Ehlers Danlos Syndrome. All my dysautonomic symptoms began with a wave of anaphylaxis and depression (no one I've seen so far has any ideas about this: but it's why I suspect MCAS). It's been a long haul getting diagnosed...but I have been tested and have positive skin biopsies for PN, a profound drop in BP with a TTT, and a DX of neurocardiogenic syncope and POTS. It's amazing no one can test for MCAS in NYC (Maitland is no longer taking patients) and I simply cannot find a communicative neurologist. I've been really disabled for a year now. I would so appreciate hearing from people here with the disorders I've listed and those who have experience with centers...I'd appreciate advice about the Cleveland Clinic and any alternatives. Mostly I'd like to know if visiting a comprehensive center resulted in an effective treatment plan for you. Thanks so much for your consideration and advice.... Sylvie

Dear Ancy, I just also want to send you my best wishes and an additional hug! ??? Sylvie

Hi TC, I really appreciate what you wrote me. I'm going to look into the low histamine diet...I see lots on the web. It's hard though, because I'm too sick to cook, and I'm totally relying on my husband for shopping and food prep. Yet I know it will be ages before I get any sort of MCAS dx. And I should do what I can to mediate symptoms. I've been reacting to all sorts of foods lately. I'm also looking into an EDS dx ..makes sense for me. We seem to be twins! I'm on a low dose of nortripyline, and as much as it adversely affects my HR, I think other ADS might be worse, as I noted above. My depression just moves in sync with my dysautonomic symptoms. It's such a quandary. I've also just read there is a really high correlation of anxiety/depression with EDS. I just think it may point to some neuro-inflammatory process going on. Anyway, I've begun my application to the Cleveland Clinic....so maybe I'll get a more definitive idea of what ails me. Now treatment....that's the more perplexing challenge! Thanks for your reply! S

Hi TCP and Kris, I did some searching and learned beta-blockers can block the effects of an epi-pen in case of anaphylaxis. I also learned mast cells emit serotonin....which is why anything that behaves like an SSRI can aggregate deregulation (at best) or trigger serotonin syndrome at worst. All my troubles with dysautonomia began with a serotonin syndrome crisis in Nov. 2014...complete with anaphylaxis. I had full-blown dysautonomia by last April. Now DX with neurocardiogenic syncope, POTs, and autonomic and sensory small fiber neuropathy. AND I'm still depressed, but on a baby dose of nortripyline....not terribly effective....and it gives me tachycardia to boot. So I am wondering about MCAS testing.....I might start a thread...for it would take an out of state trip, which I can't imagine right now! I'm wondering if I should just do what you are doing...but I really would like a good treatment plan....especially since the propanalol is helpful (though I'm very disabled). Difficult enough to get my dysautonomia DX....no one in all of NYC tests for MCAS. I know Anne Maitland did, but she's no longer taking patients..... So hard to figure this all out.... Sylvie ---Sylvie

Dear TCP, Can you tell me how propanalol and nortripyline are contraindicated with MCAS? Thanks! Sylvie

So happy to hear this.......! ? - s

Robin.... Sickness behavior is what healthy people feel when they have the flu...exhausted, seeking to stay in bed, etc. It is also common in autoimmune illnesses...like sarcoidosis, lupus MS, etc. AND it is found with dysautonomia! It also is typical of CFS and fibromyalgia....which is why researchers are looking at the role of cytokines 8n these disorders. I'm really not very clear about the workings of cytokines, so if someone more scientific is reading this please chime in.

Dr. Julian Stewart, a pediatric cardiologist who researches these things, writes about a number of different cytokines ---endogenous inflammatory markers ---associated with dysautonomia. Cytokines are also implicated in "sickness behavior," which is my biggest dysautonomic problem, and also in depression.... So apparently there is something inflammatory going on with us....they just have no idea precisely what or why yet. Just a bit of an issue that many antibiotics also cause neuropathy!

Will do!

Hi, I've found this NYC list to be dated. Moderators (and the poster) may PM for updates.

Hi Draven, To Sarah's very thorough testing list I'd add biopsies for small fiber neuropathy....very definitive for both your autonomic and sensory symptoms. These are done by neurologists. Inarguable if positive! Mine were preceded (by insurance dictates) by an EMG...no fun...measures possible large fiber (motor) impairment, and it was negative. All these tests are so important to gain a more definitive diagnosis, and also in your case, to create a clear paper trail for sick leave/disability benefits. I'm currently on employer disability, and their requests for status and updates are constant (unfortunately, I can keep up!). I'm still in the process of testing to see if I have an underlying autoimmune disorder or MCAD.....not easy. Former requires visits with a rheumatologist (although a neurologist can start the process) and the latter...well I'm still seeking someone... You do have a lot going on, and I'm sure you'll get some answers with appropriate testing......just prepare to be a patient patient (takes forever). All my best, Sylvie

Small fiber neuropathy also causes nail ridges, very dry skin, and distal hair loss. My hair has thinned considerably in my ten months of dysautonomia, and it's texture has changed. However, I'm taking the supplement biotin and I'm now seeing some improvement.

Also, GG, your girls might know this...there is an organization called Dysautonomia Youth Network of America (Dynainc.org)...lots of resources. Interesting personal histories that even relate toddler experiences!

There is a genetic condition called "familial dysautonomia," or Riley-Day Syndrome, which is first manifested in infancy. It is found exclusively among Ashkenazi Jews. This may not be what your daughter has, but there is a dysautonomia center at New York University which specializes in it. This might be the best place to take your child. Apparently they have made great strides in treatment of affected children. They deal with very few adults, though I'm going to be seen there next month because I live in NYC. Please feel free to PM me if you would like more information. Publications about this disorder, as well as support groups for it, may be very helpful to you. Best of luck....I hope you find other parents to help see you both through! Sylvie

Beautifully put Katie....real words of wisdom about finding empathy and compassion for oneself....I struggle with this. And Sarah, your words stressing a benign "letting go" of the judgments of others are also so helpful. This thread is relevatory in understanding how illness may harshly be viewed as "failure," by ourselves and others....yet it's just the way things are for many of us now....we must find understanding and kindness where we can, and especially within ourselves, as hard as this may be.

Dear RJE, Yes, you do have a lot to contend with...but you sound strong. Do you have one really good doc who can be a sort of quarterback? I have two whom I can call and/or email. Makes such a difference... I'm having a lot of difficulty traveling now too (labile BP!). So I'm spending a lot of time on the phone now...looking for a new neurologist and a MCAS specialist. Great way to triage...if they don't call back, forget it (doc does not have to call, just someone with medical knowledge from their office). I did well today...calls from assistants to one apparently good neuro and two MCAS specialists. Talked with my PCP about this today. I found my great cardiologist on a thread here. Lots of additional info. from private messaging forum members. I hope you can get a solid, reliable team....whom you don't have to visit to talk. It's a work in progress for me, as you can see, but I'm so grateful for the good ones, and so reassured by easy and direct contact. S

Hi RJE, My dysautonomia is apparently idiopathic, and I have both autonomic and sensory neuropathy. I know it feels overwhelming, but try to see other doctors who might be important for your conditions and who might be more proactive. You may just have to prioritize who you see. For example, I've had terrible fatigue since this came on (in spades, April '15). I saw both a testing neurologist (positive skin biopsies) as well as an eminent dysautonomia specialist. They did blood work, but ultimately also just "sent me home." My advice is perhaps to next see a cardiologist familiar with dysautonomia (you can consult the physician list here, or call ahead and ask to speak with someone in the practice to see if they are knowledgeable). Best thing I did....for my fatigue is explained. I just miserably failed a tilt table test (neither neurologist did this!) and was diagnosed with neurocardiogenic syncope and POTS. I found I had other significant cardiac abnormalities...I am undergoing further testing. I also was started on a beta blocker (Propanalol) and already have more energy. This has really been an emotional boost for me...the feeling that perhaps I will feel better in the future than I do now with proper supervision, support, and medication. I've also consulted with a rheumatologist and an ophthalmologist (probably another important doc for you). As noted, it's difficult to be your own advocate, but having this diagnosis requires this. Best, Sylvie