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Kris4444

Postinfectious/immune mediated autonomic neuropathy

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Hi all. I'm still struggling with symptoms during and after exercise which last all day. My new ANS doctor told me today that he thinks I may be suffering from postinfectious/immune mediated autonomic neuropathy. He says he has to consider what further testing he might want to do. He has also put an email in to a doctor at NIH to see if we can send my catecholamine blood to him for further testing. So far, no response back from NIH.

Can anyone tell me what this new possible diagnosis is? I've tried to Google info on it but it seems it encompasses several different disorders? I'm wondering why he is thinking this.

The symptoms that I deal with during and after riding my horse or exercising are: flushing, profuse sweating, goosebumps, vertigo (while exercising) post exercise: issues with thermoregulation. I am freezing all day after exercise even after showering. When I finally warm up, usually at bedtime, I overheat and get very red everywhere and fall can't stay awake.

I'm getting very frustrated as this doctor ran all new ANS testing and found many issues but hasn't answered many of my questions. He has put me on a beta blocker even though he thinks I have mast cell issues. The beta blocker does seem to help when I'm riding but not if I do aerobic type exercise like walking quickly outside or on the treadmill. I run into most of the issues when I STOP moving. The vertigo, flushing and sweating get worse when I'm finished exercising or if I slow down my pace.

Any info on this post infectious immune mediated autonomic neuropathy would be appreciated. Thank you!

 

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Hi. I don't know whether it's related to your issues, but I had Epstein Barr virus many years ago and it triggered the fatigue and autonomic issues (diagnosed as ME/CFS some years later). In more recent years, I have developed POTS (as well as being diagnosed with EDS III). I was getting more and more food and drug intolerances and I started to link it with Mast Cell Activation and or Histamine Intolerance. I score high for reactions to higher histamine foods and now I am on low histamine/inflammatory diet and supplement regime. My intolerance to exercise is still there and it hasn't helped me at all. I have also been on Propranolol, and am still on Gabapentin and Nortriptyline which have all been implicated in Mast Cell Activation. The Autonomic Dysfunction including tachycardia and gastroparesis etc have worsened as has the autonomic neuropathy in the last 8-9 years, and changing diet and using supplements seems the only way for me to go. I doubt I will pursue a diagnosis of MCAS/MCAD as it's quite tricky to get that diagnosis. 


TC

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Apparently from various pieces I have read Propranolol and other beta-blockers can trigger it or make it worse. Tricyclic antidepressants and Gabapentin have also been mentioned as adding to the problem. I will see if I can find the links later on. 

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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

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Are you measuring your HR before during and after exercise?  I used to get terribly sick after exercise  (and still have symptoms even though my POTS is much better.).  I find that it is because my HR increases much more than a normal person's.  So for example within 5 minutes of riding a bike slowly at the lowest level my HR goes from 75 to 125 when a normal person might go to 100. I can't ride at my full strength, because  my HR would quickly go to 180 or 200.  Sometimes after exercise I would have migraine headaches for DAYS until I finally figured out the connection to HR/BP.  It can also be helpful to measure your BP before and after exercise.  

I have found ways to work around the exercise hangover - drinking water before during and after, wearing compression hose and cooling down.  Cooling down is really important until my HR has calmed down.  When I first got POTS I would exercise and then sleep for a few hours!

Eventually I realized that yoga was the best exercise for me, because it keeps me moving while having my HR low.  If horseback riding is triggering your symptoms, it also might make sense to take a break until you get your situation sorted out.  Good luck!

 

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On 3/11/2016 at 4:34 PM, Sylvie33 said:

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

 

Hi Sylvie. I read this with great interest. I have EDS, POTS, NCS and autonomic and small fibre neuropathy. I've been on Nortriptyline since 2007 and I am now weaning myself off it. I didn't find the Propranolol any good and it made the tachycardia, flushing and BP levels much worse. I've tried it twice, the first time for a few years. I am now on a baby dose of 2.5mgs per day of Ivabradine, I cannot tolerate more as it upsets my bowel. I am also very disabled with everything going on. 
 

I think it's hard to get a dx of MCAS/MCAD over here and I doubt I will get referred anywhere. I knew I was getting much worse with foods and drugs. I found all the high histamine foods gave me most issues. I am now on the low histamine/inflammatory diet which is higher in oxalates and is supplemented with appropriate non-drug support. It's worth looking into Histamine Intolerance and Vagus Nerve issues. Low Histamine Chef and Dr Diana Driscoll looks into these in great depth and explain what is happening and what you can do for yourself. Even my cardiologist says what I can do for myself is better than what the drugs can or cannot do. Since being on the diet I am flushing up less and bowel is less problematic. I hope it improves further. This to me is a treatment plan and requires no drugs which I may have issues with and may cause other problems. 

I hope you get some help. 

TC

 

 

 

 

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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

 

 

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On 3/11/2016 at 4:34 PM, Sylvie33 said:

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

 

Hi

Sorry for delay in getting back to you. I had health issues for years after EBV gave me Glandular Fever. Then in 2007 everything went wrong suddenly resulting in autonomic dysfunction, POTS, neuropathy etc. I know it was MCAS/MCAD now as the symptoms have evolved and changed. The intolerances and issues have worsened and now it all makes sense. I don't think there is much chance of my doctors pursuing this diagnosis as they most likely won't even have heard of it. This is the path 'low histamine chef', took http://thelowhistaminechef.com/diagnosing-histamine-disorders/

MCAS will make you depressed and many other health issues. I have or have most of these http://thelowhistaminechef.com/histamine-intolerance-symptoms/

The Propranolol made me much worse and the second time last year I was on it everything went haywire. I am glad I found out what is going on and can work on my diet to make sure that I am doing the best thing for my body. Dr Diana Driscoll has also done a lot of research on MCAS. 

Take care and I hope you find some relief.

TC 

 

 

---Sylvie

 

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EBV started all of my problems too. I'm not sure what to think about this new doctor and his diagnosis. He is sending me for an MIBG scan now. Just have to make sure it's covered by my insurance. The doctor had to send a letter for insurance to review.

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Kris4444

Many people seem to have problems triggered by EBV. It's a tricky one. Some people recover fine and others like us have issues. I'm sure it triggered the chronic fatigue and autonomic issues that got worse. 

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My neurologist has not put that label on it but basically in explanation says the same thing. My onset was following several bouts of strep throat and a sinus infection and then some sort of eye rash thing they thought was autoimmune. Then came all the autonomic stuff... so because my neurologist believes my autonomic Neuropathy to be autoimmune based he had me start IVIG. Was very effective the 2 times I had it.

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So basically it's the thought that ones autonomic neuropathy is the result of an immune system mistakenly putting out auto-antibodies directed against the autonomic nervous system. An abnormal response that was triggered by exposure to an infection. Thus supporting an autoimmunity basis for the condition.

In my case a battle many years ago with viral meningitis is now thought quite possibly the trigger in the development of my autoimmune autonomic neuropathy. The meningitis itself resolved but I was never the same afterwards for reasons that could never be explained until years later when at least one relevant antibody showed up. I read a Mayo article a few years back which discussed the link between a person having had a viral infection which caused a significant rise in spinal fluid protein and the development of auto-antibodies and AAN. Anyway after putting it off for a long time I finally agreed to starting IVIG. I was very blessed to have it quickly authorized and started last Monday. I'm to receive it weekly for 6 weeks and then every other week for 6 months. We'll see were it takes me.

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Thanks Kris !  I hope you get some answers and symptom improvement or resolution. I know this can be such a frightfully long and frustrating journey. Keep on in your search for answers though. It will pay off in the end.

I love your picture btw. It's just beautiful. I used to show hunter/jumper and flat now many years back.

    Janet

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Thank you! I too rode hunter/jumper growing up. In my 20's I switched to dressage. My daughter jumps and is learning dressage as well but she thinks it's boring lol. 

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