anaphylaxing

I've learned that you kind of need to think about what you need from the ER before going in and stick to that. EG abdominal pain--need them to exclude gallstones, kidney stones, aortic aneurysm etc. So focus on the pain and what brought you there. If they ask about your other history then casually mention dysautonomia allergies etc...but to be fair to the ER docs (not that it's necessarily right) they need to be most on the ball with acutely life threatening stuff which THANKFULLY usually isn't POTS.

If you say too much about obscure things or seem too emotional many docs will just write you off as anxiety. Not that it's right. Hopefully someday with increased awareness things will change.

Hot topic! K, so I didn't think gluten was an issue for me, then again I flushed with most meals. I recently found out I'm allergic to nuts so was baking my own shortbread. Eating it made me super sick I almost threw up...the main ingredient being flour. So have I been gluten intolerant this whole time. Well, I'm going to try limiting it and see if it helps. I test negative for celiac.

Those of you who avoid it, do you just buy things that say gluten free or do you consider stuff that naturally doesn't contain gluten to be safe?

Life is so confusing these days!

Ana

If the skin rash sticks around, it might provide useful info to have a sample/biopsy taken of it looking for mast cells to help guide your treatment. Have you had serum tryptase drawn?

Ana

I've only had POTS since being on antihistamines and having anaphylaxis and my husband always mentions that he thinks the many meds I'm on might be contributing to the POTS. The problem is they're fighting off anaphylaxis and the only way to know if they're the issue is to stop them which is SCARY!

I've found others blogs so helpful so I just started one about my battle with mast cell disease, POTS, and adrenal insufficiency in case anyone's bored

http://mastcelladrenalinsufficiencypots.blogspot.com

If any of you have blogs, let me know, would love to read them!

Just in case any of you are interested. I Have ?MCAS/D, POTS, adrenal insufficiency too and just started a blog (yesterday) to track my symptoms/prorgression

http://mastcelladrenalinsufficiencypots.blogspot.com/

I have zero threshold for stress since this started. I can barely handle someone speaking to me, I wear ear plugs. I'm so withdrawn because I'm trying to avoid stress.

Interesting and hope you feel better. I guess I never really "recover" then because my HR always goes to 120-130 on standing or with exertion and can be anywhere between 50-100 sitting/lying. No matter when I stand it shoots up.

Interesting, thanks! I'm 30 lbs up since I've been on steroids as my appetite's been through the roof, so a bit of weight loss would help, but I definitely don't want to have those "spells" after lunch and supper too! yikes. I'm on a slow steroid taper. It's just funny to me that everyone was saying there's "no explanation" and it was as simple as what I was eating diverting blood to my GI tract and causing symptoms because I'm presumable hypovolemic. I guess we can't expect all the answers to be from the system.

In case this helps anyone else. I was having debilitating spells of tachycardia with rates up to 150 in bed at about 9 am everyday. No one could explain it. So we were just ignoring it. I tried just eating a mouthful for breakfast and voila! No spell.

I seem to be able to tolerate eating normal meals later in the day it's just too much for the POTS in the morning.

Checkout the "Levine protocol" and article discussing exercise treatment for POTS

i have random numbness hands, feet, torso, face haven't found an explanation yet.

I'm so sorry to hear this. Are you okay now? Was anything different about today? less hydrated? cycle change? anything?

drink lost and eat something, lay down for awhile and keep us posted!

You CAN do this. You ARE stronger than whatever this is.

ignore me I just realized that you already replied to this

Hi Lynne, IVIG is approved for the mayo type of dysautonomia. It is not experimental for that form of autoimmune neuropathy. If you google IVIG and FDA you will see all the illnesses that IVIG is approved for, there are a lot, and more coming that are in research protochols currently. It is a approved for polyneuropathy, but not for mono neuropathy, like small fiber, yet! It is considered steriod sparing, as conditions treated with steriods other unwanted illness caused by the steriods. It is already being used for Lupus and insurance if paying for that even though FDA hasn't listed it yet.

I get two infusions once a month and my diagnosis code is for hypogammaglobulinemia/cvid. While I do have significant autoimmune autonomic small fiber neuropathy, my large fiber nerves still work, and I had a test for the the one mayo antibody, but not the panel and that came back negative. When I saw Dr. Grubb in toledo, he said that Mayo has found 5 autoantibodies and they will probably continue to find them. He agreed that my neuropathy was autoimmune. I had an infusion yesterday and I am feeling rather good today, I usually feel fluey after infusions. My heart rate and BP have slowly been improving and my pain levels have dropped. Recently, I have finally presented with labs/biopsies suggesting that I have Lupus/sjogrens. So, there is no doubt it is autoimmune at this point. These symptoms and illnesses are all part of an autoimmune and immune defiecency defect and tend to cluster together. IVIG can be difficult to tolerate and it doesn't make you normal again, but it helps with the progression, infection and pain.

How did they determine that your condition was autoimmune and start IvIg? This is something I've wondered a lot about

-heart races with standing, anxiety, exertion

-constant tingling hands feet sometimes trunk and face

-tinnitus

-Also have mast cell/allergy issues:anaphylaxis, flushing, swelling tongue/airway, trouble breathing, hives, itching

-temperature sensitivity esspecially heat

-sound sensitive

-tired

-need lots of sleep

-muscle twitches

-low grade fever

-night sweats

-constipation

-diarrhea

-lip blisters

-increasing number of allergies

-dermatographism

-facial flushing

-palpitations

-headache

-bradycardic when lying down

-low BP

I also have adrenal insufficiency so I don't know what symptoms are what but those are them!

What limits you in the store? fatigue? heart rate? temperature? I carry I ice packs with me and extra clothing layers in case of temperature changes. I walk a bit then sit or lean wherever then go more. But I'm not shopping for myself yet or driving so I don't know if it helps

Also I'm on a fairly high steroid dose so it's probably giving me false energy. Hang in there. You are gong through SO much,

There can be a lot of different causes of changes in signal in the pituitary gland ranging from incidental/nothing to lesions. Like others said, I would get my hands on the report. Call the radiology department if you have to to see what it says for yourself. Talk it over with your doctor or if they are unwilling try to find a new doc. Also important (but I'm sure you've had it ) to test you pituitary function. Also women of child bearing age often have "bulky" pituitary glands which can be a totally normal finding in the absence of a lesion or compression of surrounding structures.

I hear ya and I've only been dealing with this for 6 months so I can't imagine how much worse you feel. Not knowing what's ahead, not knowing how to make things better and feeling so betrayed by your body. It really feels like no one can possibly understand but when I come here, I can't say that anymore. Everyone is battling their own war against these diseases and it is the one thing that gives me some comfort. I also try to tell myself it could always be worse, but I know it's not that helpful...

People always comment that mine are huge but they constrict normally with light

Yes mine started on steroids and I'm trying to get off of them, but I'm scared if the POTS is permanent that it will flare as the steroids might be helping

was that an electronic or manual? if electronic could be an error. If manual would be worth getting checked out

Did anyone's symptoms start while on steroids?

Thanks! Do you know why they decided on the propanolol? was it your rate or your symptoms? I really hope you see some great results!

I have tingling/numbness in my hands and feet and wondering if its related to POTS/peripheral neuropathy....

Would you be willing to share the exercise protocol you are using or are you not allowed to?

Fascinating! Thanks! I wonder if POTS doctors use rates to decide treatment or symptoms does anyone know?