Anoj

yes, i was also contemplating the theory of HR dropping in sleep and body jump-starting back to life. is this dangerous? many of the things you all described above happen to me as well. it usually happens when i'm extra tired or have pushed myself harder than normal (which for most people would be living a normal life). the internal nature of this is hard to describe and/or document. i was becoming paranoid that i was about to have a seizure, altho i have no idea what that would even feel like. if this theory is correct, i don't believe taking more beta blocker would make sense. that is one of the things my doc recommended - increasing the beta dose. if low HR is actually causing these adrenaline episodes, how would taking more beta help this situation? wouldn't it make it worse? doc wants me to take levsin every day. i haven't gotten much feedback on my questions about that here. probably becs his treatment option isn't very conventional or common. i don't really trust this form of treatment and haven't even done it, altho i did fill the prescription. one of my night episodes was so bad that i went to the hospital. when i arrived my BP was 140/something, which means it had to be way higher before i left to go there. lately, though, my BP has been normal during the episodes. one other thing was, my arm went completely red. (mast cell?) i have always wondered about mast cell issues. i take an antihistamine every day because if i don't, i break out in hives all over my body. the only thing doctors said was people with thyroid issues can get hives. i also have hashimoto's.

i look fine to others, but i can see things in myself that no one else seems to notice. just the other day, i was watching someone walk into my building at work and thought how energetic and spritely they looked. i walk much slower and know that i look "haggard." it made me sad seeing the other person with health and life and knowing that i don't have that. every physical act is a monumental strain to me. i have gained a lot of weight after POTS, so i don't look malnourished. i just look older, fat and haggard. i once was pretty attractive, so it's been depressing. what's even more annoying is that i have been open about my condition to my friends and family, and they still don't seem to UNDERSTAND how much i limit my activities and why. if i say i'm not going somewhere, they ask, "why? are you not feeling good?" i feel average or "normal" for me, but i'm not driving an hour to go to an all-night party, either! it just makes me angry. why would someone with POTS go party all night. does that mean i don't feel good today? no. it means i have POTS, and i don't do the things i used to do anymore. i don't know why, after explaining my condition to friends/family over and over again they don't get it. they don't understand why i'm not at every birthday party, etc. oh, i know i should be understanding and patient with them, but i don't feel like it today.

hello, i have hyper POTS. it had been a long time - nearly 2 years - since i had nighttime episodes. now that has changed. it is almost nightly, or every other night now, where i wake up in the middle of the night feeling like either a ) i am having a heart attack or b ) like i am about to have a seizure. this has been going on for about 2-3 months now. i don't know how to describe these episodes or what exactly they are. doc says they are just POTS episodes and prescribed levsin to regulate my "vagal control" but i haven't taken it yet. something that causes constipation/drowsiness/dizziness does not appeal to me. when i wake up, i feel shaky, but it's a shakiness coming from the inside, almost like, a current of electricity coursing through my veins. my limbs or body doesn't shake, it just feels like an internal tremor. it feels like my body is out of control. here's the part i don't understand. when these episodes happen, i take my BP and pulse, and they are completely NORMAL! i don't understand what these episodes are when the BP and heart rate are normal?? is it possible to have a hyper POTS episode in the middle of the night with normal vitals? this makes no sense to me. i've begun to wonder whether i am having seizures of some sort? i have already had a sleep study and 48-hr holter monitor. the sleep study showed alpha wave disturbance, and the heart monitor didn't show much, tbh. i don't think my doctors are going to want to repeat any of those tests, and i'm not sure if they're even necessary. i am just wondering if anyone on here with POTS, specifically hyper POTS, might have any experience with these middle-of-the-night episodes and/or have any ideas as to what this might be. i already know what a hyper episode feels like, but usually those episodes always showed some sort of elevated BP, and now i can't seem to document anything.

i sure wish SSRIs didn't make me gain weight, because they help my POTS tremendously. i'm on a very low dose of zoloft (not theraputic). tapered down from 50 becs of weight gain. i've been in a holding pattern, but considering switching to prozac becs i have heard it was more weight-neutral. i would love to be able to take an SSRI without side effects, because they really help my dysautonomia.

Is your doc willing to treat you based on symptoms? I personally think people can get too caught up in the strict definitions of different types of dysautonomia. Testing gives them a direction to go in as far as treatment. My HR didn't make it to 30 beats but I'm still on a beta Becs it controls my symptoms.

Can't do it. In fact, my POTS came on after a night of drinking. 3 beers, then I couldn't walk anymore.

you are not required to tell an employer or potential employer about any disability. i have researched this extensively due to problems i had at my previous employer. in my personal experience, i would NOT disclose unless and until you need an accommodation or medical help. i also wouldn't take a job unless i knew they could accommodate me if i had issues later. i went thru the ringer at my last place and was discriminated against. i'm now working part-time for a company i love. i wouldn't relive that experience for a billion dollars. http://www.ada.gov/qandaeng.htm in my case, i referred to this article frequently: http://www.eeoc.gov/facts/telework.html

i have been on & off midodrine since 2010. i am experimenting with getting off now because of the 3 a.m. adrenal surges. the POTS episodes i have in the middle of the night are blood pressure surges that wake me up from sleep. most of the time my heart rate stable, except for the surges. i ended up in the ER about a week ago becs i thought i was going into a seizure at 3 a.m. it turned out to be a surge. BP was high, arms got cold and red, sweats, shaking, diarrhea ...

are you saying that if you change betas, it might help? this one seems to be less effective after about a year.

thanks. good to know.

Well, I looked up anticholinergic (which is what Levsin is), and here is what i found: Anticholinergics inhibit parasympathetic nerve impulses (I have hyper POTS. Wouldn't you want a med that blocks sympathetic nerve impulses?) Medical and recreational uses: Sinus bradycardia due to a hypersensitive vagus nerve. Acute Anticholinergic Syndrome: Diminished bowel movement, sometimes ileus (decreases motility via the vagus nerve)So, obviously, this med has some affect on the vagus nerve??

My doc wants to put me on this, specifically for vagal "control." Anyone ever heard of this??? I haven't. I'm hesitant to take it. I'm afraid it will make me loopy and/or "stopped up." (I have those tendencies.) Again, this is not for IBS but vagal control.

I've (happily) been on Betaxolol 10 mg for over a year now. Lately, I've been having lots of problems, including 3 a.m. POTS episodes. I feel that the beta isn't doing a good job anymore. Is it possible for these things to quit working?

I'm working 20 hours a week. Working part-time has been a godsend.

Your medical history sounds almost exactly like mine. POTS, IC, hashi's ... Wow! Keep us posted!

In my experience, it's not that hard to get out of jury duty. I wrote a letter and told them I was moving once. Which I was. But never heard from them.

3 weeks on half-dose. the fatigue is better, and my body seems to be adjusting. not pooling as bad TODAY, i just wish and hope it will stay this way!

Thanks for the update!

This is on the front of the website and seems to match my symtpoms most closely: A degenerative disease of the peripheral nervous system characterized by a marked fall in blood pressure upon standing (orthostatic hypotension). The orthostatic hypotension leads to symptoms associated with cerebral hypoperfusion, such as dizziness, fainting, visual disturbances and neck pain (Mathias, Mallipeddi & Bleasdale-Barr, 1999). Other symptoms such as chest pain, fatigue and sexual dysfunction may also occur. Symptoms are worse when standing and are sometimes relieved by sitting or lying flat. Wouldn't the bolded segments apply to all dysautonomics, including POTS & NCS? The bolded parts describe my symptoms, so I thought, YIKES, I look like PAF, which sounds scary. Do the differences between having POTS, NCS and PAF matter to most of you on the board? They never really mattered to me, becs I always figured the term "dysautonomia" best describes my symptoms. All of my doctors seem to think you can have varying degrees of one or more of the different classifications. Based on my test results and limited medical care here, I seem to be a combo of hyper and neuropathic whatever (but not POTS, because i'm rarely tachy), so getting a more accurate diagnosis seemed pointless. How do you get diagnosed as "pure autonomic failure"? Is it worse than any other kind? How do you know if your dysautonomia is degenerative?

i have such reservations about SSRIs/SNRIs, even tho i know they help. i had a bad experience on effexor, so i am reluctant to try another SNRI. i am reluctant to try another SSRI becs i'm allergic to some of them, and if you google SSRIs you will see people complaining about weight gain. i personally think they all do it. (i gained on effexor, too, which is supposed to cause anorexia!) the frame of mind i was in when i started weaning was that i was feeling better and my body was ready. reality: not. how long have you all had dysautonomia?? it has been 2 yrs and 4 mos for me.

great post, buster. great perspective. i'm glad you were able to get SSDI!

full head of hair = low T?

i hope it kicks in for you and that you don't have side effects. 50 mg is the lowest therapeutic dose, and it worked great for me.

So does exercise help, or hurt? I am confused.

Same here, feeling great means bringing earplugs with me everywhere I go and limiting my activities. I am working w my doc on switching meds, but at this point it just seems like variations on the same few meds. I just wanted to talk. I'm not getting a lot of emotional support in my life.