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Other Illnesses AND POTS


MaryJo
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Hi Everyone,

I have POTS and EDS, (the EDS being genetic). I wondered what other conditions commonly occur with POTS or could be linked with it.

I also have asthma (which I have heard is linked), but would love to know if anyone else has alpha 1 antitripsine deficiency (genetic chest condition), or has anaphylaxis.

If there is anyone with anaphylaxis, (although the adrenaline is life-saving therefore necessary) can it make POTS worse? I have read that POTS people seem to get more allergies, but wondered if any of view have severe allergy, and have to carry adrenaline.

Thanks,

Love,

MaryJo :unsure:

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MJ, I have severe allergies to a number of medications, 2x anaphalaxis to antibiotics, and 2x anaphalaxis to allergy desensitization shots for environmental allergens (ragweed and mold). I've had many severe allergic reactions that were treatable with benedryl, epinephrine and huge doses of steriods.

I don't think there is any hard data (research) on ANS disorders and allergy, but there is a disorder called mastocytosis, which some here have been tested for.

See the help-yourself section pinned at the top for links.

Nina

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Oh, and the epinephrine shots work wonders to speed up your body's ability to handle the reaction; those shots saved my life at least 4 times now. However, they slayed me for at least a week at a time to recover from my autonomic systems overloading.

Other concurrent conditions to ANS that seem common on this forum:

asthma

Irritable bowel syndrome (rapid transit or constipation, or both)

Refulx

bladder problems

etc.

See the main site of DINET for readings onm all this stuff http://www.dinet.org --check out the sections marked

symptoms

mechanisms

causes

detections

what helps

what to avoid

research

and of course, links

Edited by MightyMouse
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Hi MM,

Thanks your response has been really helpful. I have anaphylaxis to what I believe is aspirin, but the blood test result seemed to be negative for this. I first got problems from applying Bonjella (not sure if you have this brand in the States, but it is mainly used on the gums of teething babies; I used it to try to ease jaw pain due to the EDS), which contains aspirin.

I was sorry to hear that you had to use your epipen in the past, but your information was really helpful to me as you are the first person I know with anaphylaxis and POTS!!!!!!!!

Thanks for the info about mastocytosis. I don't know much about this, but will check it out.

Keep Well,

Love,

MJ

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Hi Persephone,

Thanks for your response, and I hope that you are now feeling better yourself!

Alpha 1 antitrypsine deficiency is a genetic condition which leads to premature emphysema, even though you have never smoked. It is diagnosed via a blood test which takes about 6 weeks to come back to the GP. It is quite rare, but not as rare as EDS. In terms of symptoms, you get repeated chest infections, shortness of breath etc.

From what you described, I do not think that you have this, (but I am no doctor!). However, what you describe sounds like what happens to me when I get a rib sublux! I recently injured my rib area, and since then the bones pop in and out, and can move just by turning.

How are things in the Bristol/Bath area? I visited Bath and Bristol last year, when I was not so bad and could still have fun. I had a great time.

How are you getting on with your future decisions? I hope everything works out for you!

Love

MaryJo

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Just to clarify, I don't have an epi pen. The shots of epinephrine were given in the hosptial or in my doctor's office. I also caught a few reactions soon enough that a huge oral dose of benedryl and medrol pack (loading doses of oral steroids) got me out of immediate distress.

I have been told that my asthma is atypical. I don't get wheezing or rattling in my chest until I'm in a major crisis. I often get tightness and uncontrollable coughing if I'm off meds. I take singulair, advair, zyrtec and flonase every day. It's kept me stable with asthma for several years. I haven't had to use my rescue inhaler for several months :unsure: BTW, the medication in the rescue inhaler is on the "what to avoid" list, but when you can't breath, your airway is primary to the side effects. Without breathing, you die. With meds, I only feel cruddy for a few hours to a few days. Way, way better than the other option (dead).

Nina

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