KaciCrochets

1 hour ago, DizzyPopcorn said:

I cannot play video games anymore unless they're tame and nothing exciting happens.

LOL I thought I was the only one! I have never been a big fan of video games anyway but my husband and kids are, and I have a hard time even watching them play now. I get so stressed out. Ones like Beat Saber make me feel like passing out, I can't process fast enough anymore to even watch it.

I avoid confrontation like the plague, I get shaky and sweaty and get adrenaline rushes. Then I spend hours obsessively thinking over what happened. I hate it. My brain is so oversensitive that anything can trigger fight or flight, but someone being angry with me has always been a huge trigger. 

Welcome to the board!

Thank you for your replies. My weird head space is definitely a symptom and not a reaction to my symptoms, and it went away when I took the hydroxyzine. Maybe it has something to do with inflammation and intracranial pressure? Yesterday I salt loaded too much and got a major headache and felt so emotionally stressed I had to cry. Once I drank enough water to ease the headache the emotional symptoms went away, too. 

@POTSius That's good to know about the shaking and electric heating pad, I'll have to remember that. I had never had a reaction to Benadryl before, it sure is weird.

I went into my son's room this morning to make the bed and do some of his laundry (he's away at college and we are getting ready to sell our house, so tidying up), and I don't know if it was dust or what, but I haven't been able to stop sneezing. I'm desperately hoping I won't go back to surging and stomach pain now, but if I do it'll confirm the allergy theory.

Who else gets emotional and mental symptoms with a POTS flare? I get anxiety and a kind of desperate feeling like I'm trapped and there's no way out. When I'm dumping norepinephrine at night I get these weird, warped thoughts floating through my head that make me feel sick, like my brain is on a carnival ride that both spins around until you puke and has you looking into a funhouse mirror where everything is wavy and a little unfocused. These mental and emotional symptoms are, for me, the absolute worst and I can't stand them, they are unbearable. If I don't have them, everything else I go through is tolerable. Am I the only one who gets these symptoms?

I've been wondering about allergies, too, since I got symptomatic right around the start of ragweed season. My nose has been running on and off like crazy and my doctor said my lymph nodes in my neck were slightly enlarged. My symptoms got less intense on hydroxyzine, which is an old school antihistamine, but when I tried taking Benadryl I started shaking and couldn't stop. So idk what to make of any of that. I haven't taken the hydroxyzine for three nights and I haven't had any nighttime surges for the first time in weeks. I have never had issues with allergies affecting my pots before.

However, I did have an allergic reaction to my toothpaste after they switched to stannous fluoride. My whole mouth was swollen and I was exhausted for an unusually long time. Shortly after I started using a different toothpaste I started having nighttime surges, which got worse and worse over the course of the next three weeks. 

I can't say for sure my POTS got worse because of allergies, but the timing is suspicious.

23 minutes ago, Clueingforlooks said:

If my adrenaline is really flaring (like a sudden stressor) then I could get a flare of my IBS and some nausea. But the severity of the acid reflux that I’m getting now isn’t usual for my adrenaline to cause. My only thought is that my body is getting more and more irritated in the long term getting stuck in fight or flight so it’s creating more problems. 

I’ve also been having a problem with salt causing more adrenaline than it ever used to. Have no idea how I’m going to fix it. But even small amounts of salt in food lately spike my bp and my adrenaline gets worse and worse.  My resting bp can get quite hypotensive so its not like I don’t need the salt. Ugh it sure is frustrating.

Oh wow, that's got to feel awful. I can't even begin to think of why that would happen. It's crazy, all the issues POTS can cause. I read that more people are diagnosed with POTS than with MS, ALS, and Alzheimer's combined, and that POTS patients' quality of life can be on par with congestive heart failure and COPD, but still most people (and doctors!) have never heard of it. That blows my mind. We suffer so much but there is so little knowledge about how to help us. I hope someday they get us figured out so future generations won't have to go through what we do. 

2 hours ago, Scout said:

I'm so sorry you're going through this.

Similar to yourself, I had been coping OK for some years (it was still bad, but tolerable), and then, suddenly got a lot worse again — several months ago. Very similar symptoms to yourself. 

I wish I could offer some advice, but simply wanted to say we are here for you. 

Beta blockers also didn't work for me so hoping to find something very soon that actually does work, and I hope you also find something, too! 

P.S. Just noticed your username! I am just learning crochet at the moment and loving it. Feel free to PM me if you ever want to chat! 

Thank you, @Scout! I learned to crochet exactly one year ago, I'm hooked on it (pun intended)! I can make anything except sweaters, for some reason I can't fathom. I've sold quite a bit of crochet, and it's so nice to have a little income since I've never been able to hold down a job. 

It's so scary when symptoms get worse for no apparent reason. I had been doing so well, as long as I didn't push myself too much. Then bam! I had been keeping one eye on the future with some trepidation but now I'm a little bit terrified of how the rest of my life is going to go. Can't take anything for granted, that's for sure.

6 hours ago, Derek1987 said:

I dont even know what an alpha blocker is. What do they do? I have to take xanax in order to sleep. I had been taking benadryl for years in order to sleep. And that P word you mentioned, i had to google it. I dont have any tumors on my adrenal glands. Got that ruled out.

An alpha blocker is specifically for norepinephrine. Beta blockers are for adrenaline and a little bit for norepinephrine. I'm glad you got checked for pheo, although if you did have one it would have solved all your problems with a little surgery. Wouldn't an easy fix be nice? 

1 hour ago, Derek1987 said:

Not that ive noticed. They just added mestinon to the mix. Ive been on mestinon by itself and did nothing for the adrenaline. So now they are trying the combination of mestinon and coreg. They said the beta blocker isnt doing enough and are adding the mestinon to help my body " put on the brakes".

 

I dont live a normal life anymore. The best place for me to be is in bed and the lights out and in the cold. I had some visitors come over the other day for maybe an hour and a half. I sat up maybe 20 mins and layed on the couch the rest of the time. I was battling fight or flight during the visit but tried to be normal. All the noise of conversation, and trying to focus on conversation myself, it really took a toll. After they left, a tidal wave of fatigue hit me and i couldnt stay awake. Slept for about 3 hours and woke up feeling like crap. Lol.

Wow. What about alpha blockers? Beta blockers didn't work for me, either, they made me super relaxed but my brain was still jittery. I didn't sleep at all on them. I assume you've had pheochromocytoma ruled out?

Clueingforlooks I feel you. I got great sleep on the hydroxyzine the first two times I took it. After that, not so much. It helps the burning but I'm still surging constantly. I feel lucky I was only up with surges for three hours before I managed to fall asleep, but I sure feel like garbage this morning. Do you normally have stomach issues with adrenaline? This is a new symptom for me. 

I wouldn't worry. I knew I was in trouble when I started needing a higher dose to get the same effect. It takes normal people months or years for that to happen, but for me it was a couple of weeks. My brain is hypersensitive to everything, I hate it.

It is crazy, I totally agree. I don't tolerate meds well. When I found my dysautonomia doc a year after that, she said psych meds can really mess up your brain if you have POTS, she has benzos on her Do Not Take list that she gives patients. I know some people are helped by them, though. 

I know I'm posting late but I got excited at finding this. Benadryl had never been a problem for me until a couple of weeks ago, I took one to try to sleep and then couldn't stop shaking for hours. I actually went to the ER, where they gave me more Benadryl, which of course meant more hours of shaking. 🙄 I had never had that reaction before. My BP was something like 168/92. 

I do plies and tendus to keep my leg strength up when I can't do any real activity. I also like to hold a passe in releve to help with core strength and balance. Typically I do these while waiting for my lunch to heat in the microwave.  

Hi, I'm new here but not new to POTS. I'm hyperadrenergic but for the past few years my symptoms have been tolerable. However, the past three weeks have suddenly been brutal, for no reason I can ascertain. I've had norepinephrine surges all night for weeks, and after the first week I developed searing stomach pain to go with them. I've done the typical GERD protocol, and my new PCP put me on a low dose of hydroxyzine and that helps the burning go away, but does not stop the rushes. It keeps the rushes from becoming panic, but it's still tough to sleep. I had been doing well after starting the med a week ago, but yesterday I went from feeling fine to suddenly having stomach pain and nausea, and fighting panic. It was up and down the rest of the day, and nighttime was awful. I am having slow gut motility with it. It's hard not to let the anxiety spiral because five years ago I had a large kidney stone and that's when I became stuck in fight or flight. The ER gave me lorazepam, which I took for five weeks while I went through two surgeries, and then tapered off for three months, but I was stuck in hyperadrenergic h*** for two years before I healed enough to be able to sleep longer than four hours. So being back in this state for no apparent reason is terrifying. I'm 46 so I am wondering if hormones are becoming a factor. My doctor has referred me to neurology (I switched insurance so I can't see my dysautonomia specialist anymore), but given past experiences I am not very hopeful I will get help.  I guess I am just looking for reassurance that I am not alone in my struggles. Thanks for reading.