i was dx with pots in 2004. friday night immediately after eating i didn't feel right, i was nauseous, my heart picked up speed and i felt this burning sensation (felt like it was inside my arms and back). the burning feeling will come on all of a sudden, last 1 minute or 2 then go away, then a few minutes later i will feel the burning again. i was in the er friday night. they know about pots... thankfully. my bp was 112/32. they just gave me iv fluids. by the time i left my bp (bottom number) was up to fifty something and my heart rate was down, and i didn't feel to bad. the next day i had another episode, again yesterday and today. i have had these episodes before, but not this bad and not this frequent. i wonder if these episodes have any thing to do with the trigger point injections (steroid & lidocaine) i had about a month ago in my neck and shoulder. the next 3 or 4 days after the injections my face was redder than i have ever seen. but back to this weird feeling i get inside my body, it almost feels like someone hooked me up to an iv and sent fire through it. i hate feeling funny during the episode, scary. i haven't eaten much since friday, but have managed to drink 32 ounces of water a day.  last night i woke up at 1am not feeling well, my heart felt like it was racing but when i took my pulse is was 83. my heart felt like it was beating hard. i went to the bathroom, turned on the light and looked at my eyes... my eyes were dilated, i was nauseous, felt the burning, and had diarrhea which was yellow liquid. the night before that my diarrhea was white liquid, like water. i don't mind feeling pain or nauseous, but i do not like this burning sensation and feeling funny or difficulty breathing. wish i didn't have episodes that scare me. has anyone else ever experienced the burning sensations, and if so what do you do for it?

Hello. What you are describing is how my symptoms are when I am going into anaphylactic shock. Each symptoms on its own doesn't mean you are in anaphylaxis, but when we combine them all, it indicates you are headed into shock. When this happens to me, I immediately start my emergency protocals, which is to double all my histamine blocker meds (meaning I take an extra allegra, zyrtec, and Zantac) and I take a singulair. If that doesn't work, I tend to take some prednisone, which usually will calm down the symptoms.

Before I was diagnosed, I had symptoms such as yours, except that after I had all the symptoms you described, I would pass out. If you pass out, you are now in anaphylaxis. Sadly, no one (including the ER) recognized this as anaphylaxis. So, they just gave me IV fluids, nausea meds, and tried to stabilize me. It was quite scary. Now that I know what it is and how to prevent or halt the progression into anaphlayxis, I don't really have these attacks very often anymore.

Anything that is causing that burning sensation is definitely a trigger for you. Your job is to identify what is causing it. Keep a medical diary and write down everything that you eat and drink throughout the day and how you feel afterwards. After a while you will see a pattern of what bothers you.

Now in the meantime, you might be in a heightened trigger time where you are just so reactive right now that it doesn't matter what you eat or drink because you are still having those symptoms regardless. So, you need to give your body time to rest and recover. That means literally staying at home and just lying around for possibly even a week! Don't eat of drink anything but the most mild of foods. My safe foods are saltine crackers, white minute rice, and water. That is it. Even then if I eat more than a baby amount of those foods at a time, I will start to get sick. I take extra zyrtec, zantac, and allegra during these times and that helps a ton. Eventually I recover and am able to resume life again!

I totally know what you mean with the burning sensation. I describe it as feeling as if my skin is on fire under the top layer of my skin. sound familiar? Haaa. Before I was diagnosed, one of my fastest triggers to the burning feeling was even one sip of alcohol or wine. I would get a severe aching feeling that traveled through every muscle quickly along with a deep flush and headache. I quickly figured out that alcohol was not allowed, not even a sip. Turns out that both alcohol and shellfish are the 2 biggest triggers for mast cell problems. Needless to say, I haven't tasted either for over 10 years!

Deborah, Thanks for your reply. It helps to know I m not alone. I take lexapro to help raise my blood pressure, metoprolol for tachycardia (i also have dysautonomia), zyrtec 10 mg (suppose to take twice a day but been taking it once a day), fomatidine 40 mg (suppose to take twice a day but take once a day), klonopin .5 mg dissolvable (suppose to take every night before bed but take as needed), promethazine for nausea (zofran gives me a violent headache), chromolyn sodium 800 mg a day and singular. May I ask what meds you take? Grubb did give me hydroxyzine 25 mg capsules about a year ago, I took 1 capsule before bed and the whole next day I felt like I was walking on a cloud (didn't like the feeling), so I did not take it again. I wonder if there is a lower dose. Also, when you are having an episode.. does it affect your vision? Sometimes I see what looks like an old tv film (flickering). These episodes scare the heck out of me. I had just  got done eating a hamburger, french fries, a few bites of my daughters chocolate cake and chocolate milk (was at a restaurant. I never eat that much, and haven't ate that much since. I ve been eating small meals since that severe episode. I know dairy makes me nauseous and gives me diarrhea, so was in the milk. I don't know, I usually only have milk in my cereal. Also, I was around my nephew who had just gotten over the stomach virus. Can a virus stir mast cells? After the ER trip, I didn't feel good the next few days. I pooped (tmi) out pure water 1 night, then for 5 or 6 days it was pure yellow liquid. I asked the ER to do a tryptase, they said they didn't do them. Are they right?

i have POTS too. grubb gave me lexapro and said it would help raise my bp and gave me metoprolol for fast heart rate. i was worried about taking a beta blocker being my bp gets low. he said not to worry that it would target my heart rate mostly. if i did not take a beta blocker, what could i take for my high heart rate? i also have klonopin, but just read it could worsen hypotension. when i am having them attacks, i wonder what i can get in my body quick. i don't think benadryl capsules work right away. to bad there wasnt dissolvable benadryl. is promethizine safe to take for nausea? is zyrtec twice a day, singulair once a day, and fomatidine 40 mg twice a day a good start. i need something to take when the episode comes on. something that will get into my body right away. benadryl or low dose hydroxyzine?

I'm sorry to hear about the burning sensations. Ick.  That would be very scary😁I hope that with proper meds you will get this under control. There are so many unnerving symptoms with these mast cell disorders. The people on this forum have helped me a lot when good guidance from doctors is not readily available. And this is a great thread with a lot of info. I was looking for tips and a found two here. Tomorrow I'm going to double up on my Zantac (currently i take 1 am & 1 pm) When I'm in a mess, I usually take a third and it seem to help most of the time. So why not just take it daily?!! Sometimes it even seems that Zantac helps more than the h1's! But who knows! I'm also going to do the bland saltine cracker diet next time I feel ick.
As far as the vision thing. That is a major, scary symptom I get when I'm having a severe episode. Like someone posted, things seem to be moving fast and I get disorientated and feel like I'm not really there. it scares the *#%! out of me. I have also had times of a kind of tunnel vision, and other times where my vision is so off, I get sick.
Before I knew I had AU and MCAS, I was tagged a looney by the docs (I still am in some circles ) when i described these symptoms. So now I'm on psych meds I likely don't need to be on and that are probably exasperating my symptoms and keeping my bucket at a hefty weight :-