Anoj

i am not a fan of SSRI's either, except that they help me so much with dysautonomia. i do agree with a lot of what jan said, in that doctors prescribe them like candy and deny their addictive qualities. everyone knows withdrawing from them is terrible. but, instead of calling it withdrawal, they call it "discontinuation syndrome." WHAT'S THE DIFFERENCE?

boymommy sorry no- I am not nursing - I lost my baby due to her prematurity

i am so sorry for your loss. <3

Hi all, I haven't been here in ages. Guess this is the right place to come, though.

For the past year or so, I have found that my symptoms have gotten much better. This was after switching from Midodrine & Florinef to a BB, after being diagnosed as hyper. (You can tell my docs were just guessing before the "real" dx!) The other constant med has been Zoloft, which has helped tremendously, with everything. However, since I've gained so much weight on it, I am trying to get off it. I have started weaning very slowly, and boy, is life a lot harder now. In an instant, seems like a lot of progress is gone.

Another issue is that I developed hives everywhere. It wasn't suddenly, but I had to get on Allegra or else I will break out in hives constantly. Now I am suspecting a mast cell issue (DUH) and think the BB might be the problem with the hives. I'm going back to my doc tomorrow to talk about switching to Clonadine from the BB. I wonder who on this board is on or has tried Clonadine, and how did it work for you? I feel I really need a depressor factor since I'm hyper and the BB does control my syncope symptoms. I am worried that the Clonadine will make me too tired. The BB I'm on is relatively mild in that sense (Betaxolol), and doesn't cause as much fatigue as most, from what I understand.

Anyway, the other thing that got me thinking about mast cell issues is that alcohol triggered my Big Crash and many others. I started googling mast cell and a lot of other health problems I have, and, lo and behold, a lot of this seems to be related. I don't want to read too much into things or jump to condlusions, but I also have interstitial cystitis, Hashimoto's thyroiditis, hives and the alchohol thing, which all seems to have a mast cell factor. At some point in the past, I also had colitis.

Anyway, I'm doing the best I can with the docs I have locally, but it's pretty lame. I am sure he will tell me tomorrow, just as he has in the past, that deconditioning is everything.

Thanks for listening and for your thoughts.

i've gained almost 100 lbs. i blame zoloft.

i haven't been here in a while. i'm weaning off of my zoloft right now and feeling terrible. (getting off after gaining close to 100 lbs) it helps me tremendously. if it weren't for the weight gain it would be a miracle drug for me. i never went higher than 50 mg though. the more you take, the harder it is to get off, imo.

i don't have pain. is it possible to have fibro without pain? i didn't think so. i wonder if there are any other conditions that alpha disruption point to?

hi everyone. i got the results of my sleep study . no apnea, barely snored once - but alpha wave disturbance. i need to do some research. my initial results keep showing stuff about fibomyalgia. the dr. said alpha wave disturbance is frequently seen in fibromyalgia. i've never considered that i might have fibro. i don't have pain. however, it would be more likely that i would have chronic fatigue. i don't like that term (either of them, really). i consider them "trashcan terminnology," as one of my doctors said.

i was just wondering if anyone had more info on this phenomenon? supposedly the alpha waves disrupt the deep sleep (delta waves), which means you don't get meaningful sleep. when i told the doc i need 9 hrs or i'm toast, she believed me and said the only treatment for this would be to sleep a lot - as much as my body needs - 9 hrs a night or more.

who has time for that? i work and have a house to take care of, etc.

i'm just curious to what all this could mean.

thanks!

i'm sorry, i know how discouraging that must be. however, maybe it's best not to focus on that one word (psychogenic seizure). try to get whatever positive you can out of the experience - or, forget about it and see someone else. i don't think you'll be helped in the hospital unless they catch one of your episodes. you know you can't fake sweating, etc., so you know in your heart that this is not made up. don't let anyone tell you it is or make you feel like it is.

i think a lot of us just have to take the best our doctors can offer us until we see someone better. for example, my cardiologist used the word "deconditioning," which i hated - but, he did give me more answers in terms of diagnosis and testing than anyone else i had seen before. i'm just taking the benefit of what i can get from each doctor.

try to stay focused on what you know is true, and keep searching for answers. you have support here.

autoimmune disease, i guess. wouldn't surprise me, considering i have another autoimmune disease. stress is a killer.

that's pretty cool. except it's a diuretic, too.

so interesting that you brought up the bradycardia issue. i'll def ask about this when i go to my follow-up appt.

yeah, my adrenals were at ridiculous levels before i got sick. but, i'm sure there are plenty of perfectly normal, healthy people who got sick, too.

1. OP - awesome, great, wonderful description of what daily life is like! i know a lot of us can relate to that. sometimes just sharing makes a difference, so thank you for your post.

2. colored glasses? i'm interested. please, tell more! i have always had a problem with getting overstimulated. ear plugs are my friend.

btw, i believe that stress is harmful and played a MAJOR role in my illness.

good article, focuses heavily on stress. but doesn't explain a purely neurological component, which i believe exists.

I know I haven't been here in a little while. I just wanted to pop in and say hi to everyone. I have been feeling pretty darn good the past 1-2 months (a big knock on wood to that!). I attribute this to nothing in particular. I am still on the same medications, still doing the same routine. Haven't really been exercising, tbh. This is why I will never believe that this illness is something we can control. In my experience, it is pretty random.

I started going in to work again. I go in 3 days a week and work from home the other 2 days. It is still a hellhole, but I am employed and have income. It is not the most secure job, either (we are going through an acquisition), but my bosses have pretty much decided to leave me alone. Part of me thinks that this is because they are going to lay me off when this deal goes through, anyway. But now I know I can handle working in an office at least part-time, and I am LOOKING. It's tough out there. I have recently been rejected four times for one reason or another - mostly because I'm overqualified. Great. It's hard to be a gangster when your health is fragile.

I am still on an SSRI for the POTS, and it helps, but I continue to gain weight. On the other hand, I do think the drug helps me deal with the stress I'm under - and believe me, it's a lot.

I don't really see my doc anymore, either. He ordered a sleep study, which I just completed with no abnormal findings to my knowledge, and maybe he'll follow up with me after I get my results. Not really sure. It would be nice to have a "real" doctor who truly has compassion and understands the illness. Although this guy seems to be an expert, he blames deconditioning for everything - I have been in touch with 2-3 patients of his in the area, and he told them all the same thing. They were not happy about it, either.

So, a few of the big improvements for me are being able to go out of town on short trips (which I couldn't do before) and being able to make it through a workday. The funny thing is, I still can't manage to do other things, like walk through the mall. I went to return something the other night and felt very shaky. When I got home and the next day, I had a migraine as payback.

What still irks me is that I know people don't understand - particularly people at work and family members. They all think I look fine when they see me. What they don't understand is that any time I engage in an activity, I need a day of rest. It's all about conserving energy, as you know. I also get guilt trips from certain family members as to why I am not visiting them, or worse, some of them aren't truly aware that I even have a health condition.

I also still can't have caffeine or alcohol. Caffeine makes me "electric dizzy," and alcohol obviously makes me ridiculously tired. I hate having to explain to people over and over, so I just quit. Maybe they are tired of hearing it.

Well, that's about it for the update. In my mind, I'm just thinking and hoping that this crap will just fade, and I'm really really wishing that my recent upswing will continue and that at some point in my life this will just be something horrible I went through. November will make 2 years for me.

Take care, everyone.

interesting. i finally had my sleep study done after about a 3-month wait. the tech said i had no apnea and barely snored once.

i agree with spinny, that my sudden faints were much more pleasant than the pre-syncope episodes where i don't faint.

Does it have to be D3? What is the deal with D3 vs. just D?

I am going to have to re-read what you wrote. Thank you for the insight! I had a feeling it might not be true. Wiki isn't the best source.

I found that info listed here:

http://en.wikipedia....tic_intolerance

Medications that increase blood volume:

• Fludrocortisone (Florinef)
  
• Erythropoietin
  
• Hormonal contraception
  
• Clonidine
  

Did not know that - don't know if it's true. Does anyone know?

I find it interesting, especially since a lot of hyper POTS patients report better results with clonidine vs. a beta blocker. I have been thinking about switching from a beta to clonidine but have been putting it off. I wonder if this is the push I need.

update ... had to go to my eye doc today. for the past 2 days have had blurry vision out of one of my eyes. turns out it is very irritated from dry eye. the nerve looks fine. she prescribed Restasis to help my eyes produce more tears. said my eye was so irritated it looked like someone rubbed it with sandpaper.

if adderall is on the list for hyper pots treatments, then i don't see why you couldn't take another stimulating drug like wellbutrin. wish i could tolerate either of these drugs, but i can't. good luck.

i am one of those people who has plenty of warning. this can be a good thing for obvious reasons, but i feel that pre-syncope is absolutely torturous. for me, it feels like i'm dying. i liken it to and endless feeling of nausea before you throw up.

i seem to recall reading an article that said people faint at different speeds.

one of the docs i saw kept insisting i had low vit D and urged me to take it. maybe i should listen to her.