Anoj

i am not leaving the forum.

better science ... wouldn't that be nice.

as for CFS, fibromyalgia, et al, i still feel like the medical establishment doesn't take those issues seriously. people seem to be labeled a "kook" if they have these things. several doctors tried to label me as CFS, and i wouldn't let them. i thought it was a lazy thing to do, instead of finding the cause to my problems. now i think dysautonomia was probably involved with a lot of my health problems throughout life. although i would like to find the CAUSE for that.

i just want to say that i am NOT in good shape. i'm friggin fat. was i in good shape before POTS? i didn't work out. but what i did was perform at least 4 times a month, worked events, traveled, played with my kid, etc. etc. i was very active, 140 pounds. post POTS 220 lbs. i blame it on my SSRI (sorry if you've heard this story before). i'm not trying to be defensive, but i worked out for months and months after this diagnosis and did not lose ONE pound! in fact, i kept gaining! i know weight is not the issue in this particular thread, but it's just really depressing to think that anyone in this world could think that i was lazy or deconditioned. and, i got a pretty good lecture from my doctor about losing weight and exercising. "come back in 4 months, and you'll be a completely different person."

sorry, don't mean to drag this discussion out. i guess it's just nice to have a little support coming from somewhere.

IMHO it sounds like a hive. I would be very cautious that you may be allergic. Especially watch for worsening symptoms as you increase the dose.

thanks, doc, for making things worse for us. i'm sure disability insurers and social security, as well as less educated doctors will love reading this and make our lives miserable in turn.

this is one of the reasons i think "awareness" can be bad. not all doctors have the same level of understanding of this illness and spread the wrong information. heck, the ones who really know don't really know.

we all know that exercise can HELP, but what is the CAUSE of our problems?

WHAT IS THE CAUSE?

i believe that we are all pooling somewhere, and all these other bodily functions being out of whack are just reactions, whether hyper, traditional or whatever form of POTS.

WHY ARE WE POOLING? WHY AM I POOLING?

i think there is a real, NEUROLOGICAL reason for this! why is it that when i drink caffeine or take any stimulant, it feels like a metal pole is being electrocuted and twisted inside my brain, then i am so sleepy i can't help but take a 3-hour nap. this has nothing to do with "deconditioning."

why is it that three rounds of 3-month exercise sessions didn't cure me over the course of 2 years? (and more exercising at home)

my doctor subscribes to this "deconditioning" philosophy, and it's not helping me.

i have neuropathy and hyper components. i thought they were supposed to be separate.

i also had a gradual and sudden onset. i had reoccurring symptoms until one day, bam.

oooooh, i have struggled with this issue, puppylove! you would think that the last thing we'd be worried about is what people think of us in wheelchairs, but i struggle with the same thing! i also feel kinda guilty, like, hey i can walk, why am i in this thing, and people will think i'm nuts if i get up and move around. but i know it would be absolutely necessary for me in certain situations. i couldn't handle a tour i was on recently and had to leave early. i was able to stand for about 45 minutes, but i was very lightheaded and uncomfortable and kept wiggling my legs and squeezing my calf muscles. i hope you enjoy the fair.

i have gone through three 3-month cycles of exercise with a personal trainer who was educated about my condition. it did help, but it didn't cure me. it's frustrating. i'm in a lazy phase right now, which is my own fault, but after trying and trying and trying to diet and exercise and take care of myself, and going through a horrible 3-month period of zoloft withdrawal and then re-acclamating to it, i'm not motivated. i don't know what it will take to get me back on track.

hashi's also was my first dx. i was dx after i had my kid, but i have had it since i was 10 years old. what i thought were regular sore throats turned out to be repeated bouts of acute and very painful thyroiditis. now, why would a 10-year-old get that? i have had a pretty stressful life, and i know that contributes to a lot of illness.

thanks. they tested me for sjogren's and i didn't have it. i'm not sure what test they used, though. it was something my endo did.

This sounds awesome. Pensacola is about 5-6 hours from me. I wonder if I could handle the trip.

McBlonde, I have Hashimoto's. I wonder if that has something to do with it.

what happens when you get off of the beta? what withdrawal symptoms do you have? why do you need to wean slowly, and how slowly? i am on the lowest dose. not sure if that matters.

you know, the more i think about it, maybe this is more of a "burning" sensation.

thanks! i assume that he meant my veins were constricting because of the high NE levels. there wasn't much other evidence. but i know i'm still pooling because i can see it. my TOES pool. lol.

Hello there. It has been a while since I've last written. I've been reading and lurking more lately.

It has been about 5 months since I was "officially" diagnosed with hyper POTS. At that time, my medicines were switched from Midodrine + Florinef to just a beta, Betaxolol. Since then I have noticed a marked improvement in certain symptoms, but a marked decline in others.

For example, I no longer get adrenaline surges. This is great! Most of my syncope spells were preceded by extreme adrenaline. Also, I really haven't had any fainting spells since I started the beta. I am able to engage in some "stimulating" activities that I could not do before, such as riding in a car for a long trip. That's the good news.

The bad news is that I feel like I'm pooling more, and my tolerance time to be upright seems to be shorter. I just don't have the energy to walk or be upright. I spend most of my day sitting and/or reclining (which I know does not help POTS!). I did go through another round of exercise therapy, and that didn't seem to help the pooling. I feel like the increased pooling could be because of the beta.

That's where the action plan comes in. I'm wondering if switching to clonidine or Labetalol would help. I've also been toying with the idea of adding Midodrine back into the picture. However, my doctor said during TTT, my veins were constricted - don't know how he knows this, but I'm confused about it to be honest.

Just not sure which direction to go in right now. Any insight would be appreciated. Thanks!

i'm looking at the other symptoms, naomi ... bladder incontinence. hmm. i'm embarrassed to say i've been having this symptom, too! ugh.

oh, great. i did test positive for neuropathy. thanks, naomi!

it is interesting you say that - i was tested for Sjogren's and it came out negative. i was sure i had it because my eyes were/are SOOOO dry! if you look up dry eye symptoms, you will probably see that abnormal tearing is actually one of the symptoms of dry eye. i know it sounds weird and opposite, but it's true. maybe the dryness is causing the eye to overcompensate.

Hello ... I have seen in various places dry eyes listed as a symptom. Before I had my initial POTS crash, I went for a few months with VERY dry, red eyes, to the point that they were extremely painful and I couldn't tolerate any light or wind. I went to several docs, and none of them seemed to come to a consensus. One of them said I had pinkeye, which I knew was not the case! The only thing that helped was steroid drops.

I'm starting to have problems again. It's very uncomfortable. I was just wondering if this is related to POTS and how.

Thanks!

My onset was withdrawal from an SSRI. My doctors think the drug was masking my problem, but I think the withdrawal itself was the cause (combined with alcohol). I don't know what the "root" would be in my case, and I've never met anyone we whose dysautonomia was triggered this way. Hard to convince the medical profession that the drug withdrawal could have done this.

I have neuropathy, but I also have hyper components, so I guess mine is "mixed" POTS.

I wonder what this means for the hyper patient. One doc has been telling me for years that I'm vit D deficient.

Thanks Anoj. Which one do you take?

I've been on 10mg for a little over a year now. I just did google and now I'm more freaked out, I read all the possible side effects, arrrg. Part of me wants to not mess with it and just stay on. But maybe there is a chance I could feel better by not taking it, who know, like you said, everyone is different.

don't freak out. you can handle this. i am on zoloft. i take the lowest therapeutic dose, 50 mg. when i weaned, i alternated a full pill with a half pill every other day for about 3 weeks, then cut down to a half a pill a day for about 3 more weeks, etc. that is slower than a doctor will tell you to wean.

i would definitely not stop cold turkey, and i would not listen to that guy! i have weaned very slowly in the past, and yes, it does cause symptoms like dizziness. how long have you been on it? if you google you will see lots of information about tapering off of antidepressants slowly.

i recently tried to get off of mine and failed miserably. my dysautonomia got worse when i weaned off. but everyone is different.

i think i may ask her to take her BP lying, sitting, then standing.

she has had several TIAs, and her kidney function is deteriorating. her numbers are way more controlled now than they used to be. i am glad that you guys think her numbers look good. i have been researching, and i think the wide pulse pressure might have something to do with hardened arteries.

she fainted once while trying to wean off of lexapro (same thing happened to me), and she fainted once after taking a pain pill after a dental visit (same thing happened to me!). so, i thought dysautonomia might be something to explore with her.

thanks for your replies.

This NET topic is one I've been interested to understand but this thread and even links are way beyond my level of comprehension. Can someone help me understand this at a milk and cookies level?

i second this. i struggle to understand a lot of things posted here, this being one of them. and, i don't have a lot of free time to research.