westernmass

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I usually only check my left arm! Ill keep an eye on it the next few days and see if I notice anything causing the painful ones.

Yes, me too, exactly! I've been wondering if I'm just doing it too tight? Ill try it looser later and see if I still get the throbbing pain. Makes me lightheaded sometimes. I follow instructions so don't think it's over-tight.

I actually have one area like this. It's on my chest. Haven't been able to figure it out. It's not always there and if I poke around there's not really a sore spot-- just sometimes something will hurt. Like a burn is how I explain it- water from the shower or sometimes my clothes or something will hit it right so it hurts. No idea what it is or if its at all significant but would love to know.

POTLUCK- wow, incredibly interesting. I feel like this may apply to me and gives me something to look into. These weird symptoms are hard to explain do I've actually never brought them up to anyone, but seems like I should...

Naomi-- I've recently, twice seen smoke that wasn't there!! I've been keeping it to myself-- but what do you think it is?? Aura related to migraine? Also to the original poster- I have also recently been smelling things that aren't around- garlic once, vanilla once (much more pleasant lol) and an insence smell once. I have also in the past few months seen the return of my migraines, so I'm guessing/hoping these are all related and I'm not headed toward the looney bin...

I've also, since pots, had bloodshot eyes ? Dry eyes and skin worse over the past year... Who knows (hopefully some doctor eventually will be able to tell me something decisive!)

I'm not sure I experience any, TBH. I wanted to get tested bc everything I've read for pots says treat any underlying allergies, and in the past year I've become allergic to my perfumes and my GI issues have been way worse since pots. Nausea, bloating, IBS- none of which I've had before (although I have had intermittent diarrhea for years...sorry TMI!!!). The allergies that came up were the delayed reaction sort... So that would make sense for the stomach trouble? But these have definitely developed fairly recently so I'm wondering what's going on inside my body! (As we all are...)

I went to Northampton wellness center in Massachusetts. It's an integrative place and they do a lot of allergy testing/treatment. I think a lot of places do. I had two types of bloodwork, iGg and iGe- one is for immediate reactions the other delayed. I was negative for two celiac blood tests. I was eating gluten (lots) at the time. I've been off all my allergens/intolerances for a little over a week now. GI issues definitely better but POTS symptoms still there. I've read it can take months to see improvement from GF. I don't really know at this point, LOL. I'm sticking with it but feel like I keep hitting dead ends with my search for the cause of my pots.

I'm definitely gluten intolerant/allergic. Was just hoping for answers finally! Can you give me any insight to looking into mcas if my tryptase is normal? My primary doctor has been great about looking into thing for/with me but not a lot of ideas on his own at this point and I've got potentially another 7 months until I get in to see an autonomic specialist.

Well my tryptase wasn't elevated and the blood work for celiac was negative. More dead ends! Not that you ever want diseases but I know we all want answers.

Thanks for checking in on the licorice. Sorry for the advice!

I know licorice root raises blood pressure... NO clue if its safe during pregnancy but maybe worth looking into?

Thank you, I will look into him and am willing to travel. I appreciate it. My issue atm is that I Already had all that testing, know it was "abnormal" but have yet to see a dr and get the full results. Ugh!

Same coast, but va is a pretty far hike! Though honestly at this point... Unless you meant Norfolk, MA?

OMG I feel you on this!! I had autonomic testing done at Beth Israel in Boston and have since been waiting almost two months to get an appointment! I'm on the wait list... For some reason they aren't setting appointments- everyone goes on the wait list. I call every week and am told the doctors aren't in or there are no spots... No appointments... Call back next week. very frustrating! Glad I'm not alone (maybe its a mass thing? Lol) but sorry you are dealing with the same.

I go weekly and take Chinese herbs as well. I've never had any bruising and at worst the needles feel like plucking a hair- most I don't even feel. I know my chest pain is the least bad it's been since starting acupuncture and the herbs. Make sure you look into different people and make sure they are liscenced! Tradtional Chinese medicine can be very effective but takes a totally different approach than western medicine. The acupuncture itself I find very soothing and meditative. I always sleep better after.

I have the small kind of circles/patches on my upper shoulders that seem to have lost pigment. It's very subtle but I never had it before. I wonder if this Mast cell related? My dr just checked my tryptase levels... My scalp is also itchy and has either pimples or little scabs- hard to tell through my hair. They aren't too noticeable but they are annoying!

I don't have this as severe as you, but the post about some fingers burning and some icy is me! Again I don't have visible raynaud's but sometimes ill have a few fingers feeling very hot and one or two feeling icy cold. So weird!

I have had something similar happen two or three times since pots. Wake up in the middle of the night trembling uncontrollably, with a strange feelin of not being able to move. When I do move after a few moments, the shaking stops. App three times were terrifying and I was exhausted after. Didn't last long. I know when I wake up in the morning, I experience this weird vibrating feeling- but I'm not actually moving at all. It's like an inner vibrating. Feels very strange.

Yikes, sorry you are going through this. Since getting pots in February, I also have developed ibs symptoms. I am on some Chinese herbs that seem to calm things a bit but still suffer from the symptoms- and mainly bloating! I was tested for food allergies, as I had a hunch I'd been developing several allergies over maybe the past year or at least since POTS. I have many, including gluten. So in addition to eliminating my allergens, I'm being tested for celiac disease and mastocytosis. Still waiting on blood results and just starting day 2 allergen-free but hoping this helps my poor digestive system. Have you been tested for allergies? Celiac? Do you have a history of ibs symptoms? My primary doc is my favorite so I had no issue going to him for help-- good luck I hope you find some answers and relief soon.

Yes I have seen that. Before I got sick I was very into green smoothies one doctor told me to avoid raw veggies though because they are hard on the digestive system and mine is so messed up atm. I don't know if a smoothie counts as raw? Any ideas?

I use coconut oil on my skin (it actually seems to help my acne on my face and otherwise is a nice moisturizer) and occasionally will eat a scoop out of the jar since I have heard of many health benefits. I've tried cooking with it but find for anything other than sweets it's too much- I prefer olive oil in a stir fry, for example.

^^ wow, no I haven't had that happen. Not that extreme at least. I do get flushes but not asthma attack. Could be MSG in the Thai if you've reacted that way before? Did you have asthma before pots? My pcp does think I should stop eating the foods on my list. So a new diet for me. I know it will be tough to get used to but the silver lining as many have pointed out is that I'm sure I will start to feel better when I stop giving my body food it shouldn't have! In the meantime my pcp ordered blood work for celiac and checking tryptase (sp?) levels for possible mastocytosis. I am now gluten-free dairy-free onion and garlic-free, egg-free, apple/pear-free and nut-free. Sheesh! Wish me luck

I have the mirena iud. I have basically no period. My acupuncturist, and mother, and deep down even I don't feel this is healthy. Specifically the acupuncturist doesn't feel it's a good idea to suppress any blood flow in the body especially when dealing with something like pots. I was thinking of switching to bcp to have a period again but even those are fake periods really. Plus everyone seems to be saying their pots gets worse with a normal menstrual cycle... I feel like this is really relevant to health ad maybe to pots issues and I just don't know which direction to go. No-bc is not an option for me either.