iheartcats

I can't believe you went around with that for so long - at least you know that sharing your story, if any of us have a serious accident we'll demand xrays for 'bruised' areas. I hope they can fix this for you. Keeping my fingers crossed for you!

When I am sick, my POTS goes crazy. I have worse symptoms even if I am fighting a minor virus. With a severe flu (which I had last year) my heart rate was off the wall, could be 120+ sitting. Drink lots of fluid and salt, if that works for you. It helped me get through the worst of it.

Oddly enough, I think it helps. I've noticed if I have very bad day or two (really tachy and stuff) and take a Xanax before bed, the next day my blood pressure is 'ok' and my tachy is improved moderately. I have no idea why Xanax would help - it's a drug I'd rather not take daily, so I wonder what it's doing and if something else could help. It's great for occasionally getting me some sleep/relaxed on the worst days and it's a nice side effect it helps symptoms a bit. Maybe this is something I need to discuss with Grubb.

Hmmm...that's good, glad no real POTS flare up. I'm keeping my fingers crossed. Just want it over and done.

Crap, Guys. You don't know how bad I want a good delicious expensive glass of wine. Now I'm tempted.

This seems to be working for me, too (just a few times a month) - I was told not to worry about addiction/withdrawal for an as-needed case (taking 3-6 times/month or so on average). So very glad to see other people have a similar set-up without issues.

I was told to take one Benadryl, and to take another if hives came back (otherwise Allegra was 'covering it.'). Hmmmm. I guess it could be a mild reaction returning. Either way, I hate these severe reactions because whether it's the Benadryl, allergic reaction, or whatever it's horrid the next day. I take Xanax on occasion (few times a month) and that's a CNS depressant and I do not get rebound Tachy. So it may not be the Benadryl.

Isn't it frustrating! I had a RAST for peanuts (it was negative, but haven't had an outright flare-up from them...). So it'd be great to know what's causing these. Do you take a Benadryl right away to stop your anaphylactic episode? I've had hives, issues, stomach probelms, etc. which is said to be an anaphylactic episode (and slight breathing issues, but no throat swelling thank goodness). I never know how bad these will go. I'm being allergy tested in January so we'll see!

Thank you! I'll work on staying extra hydrated (I always wondered if it was the Benadryl making my mouth dry!).

I have pizza once in a while from local places who can verify ingredients, and I always say nut allergy because of a reaction I had to cashews (and I believe almonds once). Tonight I noticed red hives on my chest and a few on my arms while eating cheese pizza. I was going to skip the Benadryl (last time I had to take it it made my POTS worse for a day or two, very Tachy, but in part I guess that could be from the hives, too), but I didn't want the hives or reaction to progress. I take Allegra every AM, but my PCP said I should take one Benadryl for a hive outbreak 'just in case' and make sure symptoms subside. Any ideas what could've caused the reaction? I eat bread, tomato sauce, cheese, etc without issue. I verified they use no nuts and they were familiar with nut allergies. As for the Benadryl - any way to try to 'beat the game' so I don't have worse POTS/Tachy later/tomorrow?

Sounds like a normal morning for me. Just getting ready waiting for Midodrine to kick in/getting hydrated. It usually calms a bit (90-105) in car, flares up walking to work, and I just am learning to deal. The more dehydrated I am in the AM, the worse it is.

Thanks for all the info - I feel a bit better about this now. I just want it overwith (and am secretly hoping I do not have a Gluten Allergy...!). I haven't started Beta Blockers because, in part, of my allergies. I want to know I'm not allergic to nuts, first - at least not enough to send me into shock because the Epi wouldn't work on Blockers, I read. I carry one now because of the severe Cashew reaction I had. I will hug kitty. I wish I could clone this kitty who doesn't flare me up.

I think I really have to keep my allergies under control - I take Allegra daily (and may switch to Zyrtec in the Spring/Fall seasons, I'll see how it goes). I also take Nasacort during the worst allergy times of the year. I have a cat - my old allergist said I could have 'immunity' to him...he doesn't cause hives, watery eyes, etc. I'm fairly lucky in that as I love cats. Other cats make me flare up a bit, though, so this cat is it for me I guess. Not gonna rock the boat. Dust Mites are my nemesis. I try to keep it dusted. My spouse tries to keep it vacuumed. I am supposed to wash my bedding every two weeks and I try...sometimes it's three and I really start to notice. But dragging it all to the basement is a pain and I'm usually exhausted from work! I do what I can, but do think I feel worse without having my allergies somewhat under control.

My doctor and I decided it'd be worth it to get an allergy skin-test to see if there are additional things I should avoid. I know I'm allergic to pollen/ragweed/some molds/dust mites (as are many people and you do what you can to avoid them) and I take Allegra. It seems to keep these somewhat under control. I'm also suspected to be allergic to nuts as Cashews gave me severe hives. I have to go off Allegra for 3 days though and I know I'll have to struggle with that...at least it's cold outside (getting this in January) so it's much better to get it over with now than in Spring. But my indoor allergies will be bad, I am sure! Any advice on how to get through this test and can I expect my POTS to likely act up afterwards? Any big risks of having this test? I also have eczema, but that's tied in with the whole allergy mess so I know that might flare up a bit.

I always get hives after shower/heat...I've looked this up and it's somewhat 'normal' in the grand scheme of things (some people have this reaction, not much you can do, etc). I also always turn bright red after scratching/touching (I am fair skinned)...but I don't think I welt like that. I just 'scratched' my arm to see...it's rather red, but I don't see welts. I do hive easily, though. I've always had horrid allergies and it may just be horrid allergies rather than MCAD. But I'd like to at least 'rule it out.' Thanks for all this help.

One is a serum tryptase (for mastocytosis) One is a four hour urine collection for methylhistamines (must be after an "episode" or it will be normal!) for MCAD Thank you - very helpful!

To verify, as I am calling my doctor, too...what is the exact test I ask for (the 24-hour urine dump)? Is that the main test to do first? Any blood tests?

I'm concerned I may have Hyperadrenergic POTS...due to my sister and brother now having symptoms in their late 20s. I really don't know where to begin with this - how can I have my NE levels tested (does this require a TTT)? Are there any medications a Hyperadrenergic POTS should not be taking? Are there any that are very helpful? I did notice the first time taking Xanax (used it for two days) my POTS was better...which was bizarre.

I'm very curious about this, too - I have horrid allergies and even get hives taking a shower. Just with water! I'm sensitive to foods, have trouble swallowing sometimes, and have eczema. I am trying to figure out how to approach this with my PCP - the tests sound so complicated, but she's good with helping me figure things out. I have an appointment with an allergist for a full test and I have to go off my Allegra for 3 days - is this likely to make my POTS horrible? Could this be a 'bad' thing to do (I need to find out if I'm allergic to nuts/wheat/etc)? Can I bring up MCAD with the allergist? Will they have an idea of what it is? Thanks for your help - I think we all have a lot of questions.

I recently found out my sister has been having some fatigue and heart rate issues so I put my heart rate monitor on her when I was home for Christmas. It went to over 100 and stayed 100+ while standing, like mine does. I sometimes randomly text her to take her heart rate and tonight it was 117, sitting. (On a GOOD DAY mine is 95-115 standing/walking, BAD DAY 115 - 155 up and about). She seems 'similar.' My brother has been having lots of fatigue/dizziness/etc. I took his heart rate (yes, I'm the crazy oldest sister) and it was 108 standing. None of us were really 'stressed out' during these tests. He's been to various doctors and they just say he has 'anxiety' and gave him Lexapro or something. Doesn't help. And my brother isn't the 'anxious' type, he's the most laid back of all of us! I know POTS is more prevalent in women, but what about my brother? How do we find out if this is some weird family thing? I'm concerned because none of us had symptoms show up until late 20s to early 30s - shouldn't we have seen these as a kid if it was familial? Or could we have a gene that was 'activated' by something like stress/viral? I know my POTS came on soon after the 'worst flu I ever had' and while going home from work with this 'worst flu I ever had' a saw a man get hit by a car and fly through the air and had to call 911. So I had a stress + viral event all in one. Any input you can give will be helpful. I've given my sister info on POTS to take to a doctor and we're going from there. She wants them to quit dismissing this as anxiety, because we are fairly certain it isn't.

I've taken it for a couple of nights now, and it helps me relax, get to sleep, and I don't have crazy-tachy-symptoms the next day like the Ambien so that's wonderful. Of course it could always turn on me like the Ambien, but for now it's helping. My prescription is as-needed, up to 3 times daily. The doctor wasn't concerned about 'withdrawal' - but I read so much about slow withdrawal of this. What if you just take it a few times a month, or say 3-4 nights in a row for a 'big event' your going through and then just a few times a month following? Any precautions I should watch for? Thanks!

I get occasional pains when I over do it...was told these were 'normal' but please get it checked out. It's peace of mind if anything. I had a couple EKGs last year that showed 'normal' - even though I sure don't feel normal!

I don't take Florinef...it's just one I'd like to avoid if I can from things I hear about it (I know it works great for some people, but I'm not comfortable with it yet anyway). But is there a test you can get for MCAD beside a bone marrow test (I tried to Google it...). Is there a simpler 'first round' - I'm heading to an allergist next month and think it'd be nice to check up on this, just in case. I have horrid allergies and it's worth a check. I also did not know you could go anap. from going off a medicine. I always try one new medicine at a time because of my sensitivity. I'm allergic to nuts, so I know what anap. can do (makes my POTS horrid for days...last time I accidentally ingested something and had to take an emergency Benadryl I had hives, diarrhea, stomach pain, and mild shortness of breath which lead to being severely dizzy and tachy for a couple days...so I see how this could be an allergic reaction rather than POTS in and of itself).

Be far away from the Virus that I suspect 'activated' the ol' POTS!

Sounds like it may be worth starting a small dose - at least giving it a try. I know I sometimes have side effects from medicine, but never have had 'all listed side effects' if you know what I mean. I may have a few and if they are tolerable, and the meds help, I continue taking them. Well, after I see how Mestinon goes it's nice to know that there's something else to try...tachycardia does get exhausting, easily.