scarfgirl

i would scream if i couldnt work at least part time so i dont know how the rest of you do it.

I scream. A lot.

Wow, thanks for all the responses.

I've been limited in medical recourses for almost a year because my doctor was busy having a baby. But now that she's back from maternity leave and my weird little clonidine crisis is over we're looking at the options about what to try next. I'm doing better, but I'm still not stable enough to work, which of course is my ultimate goal. So back to medical musical chairs.

Mestinon isn't listed in any of the research I have, but I had noticed it get a lot of hype so I wanted to get more info from people who had actually tried it. It's always hard trying to decide where to go next, especially since you always have the possibility of making yourself worse instead of better (or like Adderall that worked miracles but had that one annoying side effect of making me manic and suicidal).

Goldicedance, you mentioned a list of drugs that Grubb outlined? Where can I find that list? I've never seen him, but I did have him send me a bunch of research and we've mainly been going on that. However, both mestinon and procrit are absent from that list. Maybe it's time I requested a research update.

Thanks again guys.

kexia,

what do you mean by flare ups? theres periods of time your normal? lucky you lol i guess imno tthe only one who cant work but with me its everyday if i stand i get sick

I don't think I've felt normal in years, but I go through periods of time where fatigue and a little morning dizziness are my biggest complaints. During those times I am capable of working. However, if I catch a cold or push just a little too hard I am right back in that bed for weeks at a time. Because of that I can't keep a job, no matter how understanding my employer is.

And don't count yourself out just yet. I've had this for years and was completely bedridden at first. It takes a while to find a treatment that works, even now I'm still hoping for a miracle drug to come along and grant me some stability.

I know there's similar posts regarding mestinon, but you know.....brain fog, don't really want to sort through them all. So if you're taking or have at least tried mestinon, what was your opinion of it?

Thanks muchly,

Stacy

he considered "true" dysatuonomia's as things like peripheral neuropathy's, shy drager, and pure autonomic failure. he said pots was an extremely mild issue and not a TRUE dysauto.

That's like saying rheumatoid arthritis isn't a real autoimmune disease b/c Lupus and MS are more systemic. Definitely time to find a new doctor.

"Eventually all you women...

Statements like that are why I only see female doctors unless the male doctor comes HIGHLY recommended. Medical doctors often display a level of sexism you don't usually see among people of equal education. But that's ok, because the majority of people graduating from med school these days are women so that'll be changing real quick.

So what does he consider a TRUE dysautonomia?

The people I've met in life that are often considered the most "successful" were also the most miserable. I don't know any lawyers (except mine of course) but the doctors I know are slaves to their incomes, constantly having to worker harder and harder to afford their lifestyle and always stressed out and unhappy. You can't measure sucess by what job you have or how much money is in your bank account. Don't diminish yourself by comparing yourself to "normals". Looks inside yourself and what you've had to go through. Do you feel like you're doing the best you can with what you got? If so, then you're a success.

Having said that, yes I constantly feel like a failure. I was watching a TV show and one of the minor characters was a college professor. All of a sudden I couldn't stop thinking about what my life would have been like if I had been a professor (the career I was working toward before I got sick), instead of lying around all day playing World of Warcraft. I started getting really depressed and panicking at the contrast between what I wanted out of life and what I had. Coping is bitter and difficult sometimes, but take comfort in the fact that life rarely turns out right for anyone.

But, Mousie, thou art no thy lane

In proving foresight may be vain:

The best laid schemes o' mice an' men

Gang aft a-gley,

An lea'e us nought but grief an' pain,

For promised joy.

Still thou are blest, compared wi' me!

The present only toucheth thee;

But, Och! I backward cast my e'e

On prospects drear!

An' forward, tho' I canna see,

I guess an' fear!

Twice I held down part time jobs for a few months. Both times I lost the job because of flare-ups that kept me out of work for too long.

Perhaps if they hold me underwater for a little bit longer each time, I'll learn to breathe underwater.

Brilliant and Snarky. I love it. I'll save that one for the next time a certain someone gives me crap about my illness.

Mkoven: Welcome, and I hope you find what works for you.

Maybe Topamax just hits that part of the brain that's messed up with dysautonomia in just the right way. Lots of us take medications that weren't originally intended for dysautonomia and it looks like Topamax is already being used for weight loss, bipolar disorder, and lots of other things....so why not fainting?

EDIT: I found this article on a fibro site. Not very helpful I know, but if you skip down to the bottom three paragraphs it mentions how Topamax has the potential to treat many different disorders and helped this woman with her fainting. Maybe you stumbled upon a jackpot for yourself.

I have nothing much useful to add, just wanted to say welcome and to let you know that what you're feeling is quite normal. While it's a relief to finally have a diagnosis, finding out you have an incurable chronic condition is always hard on the psyche and it takes a while to cope. Hang in there.

The two types of noises that bother me are bass beats from (usually other people's) music and chatter. The bass upsets my head something awful, it's like my brain tries to pound in time to the beat. Environmental noises don't bother me but the noise from crowds does. I think my brain tries to process all the conversations going on around me and gets overwhelmed. I don't know why people talking gives me so much trouble when I can just tune out TV, traffic, construction, and my parrot chattering away non-stop.

You know what else gets me really bad? My husband's SNORING . He doesn't do it often, but when he does it's like someone is trying to saw into my head and I want to run screaming out of the room (and probably would if I could do so w/o falling down) Isn't that silly?

The electrophysiologist I saw said that ncs shouldn't make me short of breath or cause lightheadedness while exercising--just after.

That makes no sense. Of course you can have shortness of breath or ligthheadedness while exercising. Heck, healthy people have those problems when they push themeselves too hard at their workout. And for people with NCS standing up/walking is often pushing yourself too hard.

Florinef works great for me.

No side effects at all, but I am concerned about long term effects of using it so I stay on as low a dose as possible. I know some people use licorice instead of florinef so that's always something to look into if Florinef won't be your friend.

Yes, compression hose give very similar effects to midodrine. That doesn't mean you can't use both at the same time if you need too.

I tend to overheat quickly with the hose, even in winter, so I mostly just stick to midodrine unless I'm cold and dizzy

Thanks, I FINALLY managed to get an appointment with my doctor and I'll be seeing her tomorrow.

Also, I convinced the pharmacist to give me a few pills of the brand name and I've been taking them the past couple of days. I'm still out of breath easily during the day but I haven't had anymore of the night attacks, which is a HUGE relief. Keeping my fingers crossed that the solution really was that easy.

Tell me more about this patch...I've never heard of that. It doesn't irritate your skin to have something stuck to you for a week like that?

Karen

My guess is that he's using metabolic vs genetic as synonymous descriptors for acquired (caught it from a virus or injury, etc.) vs inherited (was born with it). I've heard metabolic and genetic both used in that sense often enough before, though never with POTS. He definitely needs to be clearer however as to his intent. Does he think this distinciton will affect your current treatment?

Stacy

I don't take clonodine, but I know that if I miss a dose of my meds, my heart goes crazy. The last time I missed my midodrine, I ended up in the ER with tachy that was out-of-control.

I know the general rule when taking meds for the heart is to never miss a dose. Our bodies become dependent on these medications, so when we're off of them, we're often in a lurch.

Hopefully someone here can help you with your clonodine question.

-Lauren

Thanks, but I'm not really worried about missing that one dose--it's bound to happen eventually and while aggravating it's rarely serious--I'm more concerned about the sudden change in my condition. I'm usually pretty stable and it scares me to suddenly be feeling bad again without a cold or bad day of some sort to point my finger at.

My husband used to work in a pharmacy and he swears people have problems all the time when they switch generic brands, but I dunno. I called my pharmacy and they're gonna get in the old brand of Clonidine and I'll see if things go back to normal. I really really hope that is the issue; I'm starting to get scared it's not. I can't sleep at night b/c I'm always gasping for breath and during the day I'm so foggy and exhausted I can't carry on a conversation. I haven't had symptoms like that in years.

My doc always told me as a general rule to give your body a week to adapt to new meds as long as the side effect stay relatively mild. Hope that helps

I decided to try the effexor xl. Day2 and I have a headache and am dizzy but no nausea or agitation so far. Anyone else have headaches on this med? Did they go away?

Dayna

It's possible you were always prone to this illness and it just took a big surgery to make you succumb to it. Or, it's possible the surgery itself fubbed something up. Or it could be something else entirely, and yeah you'll probably never know for sure.

You mentioned your own health was always good. What about the rest of your family? From what you've given so far it sounds like you don't have a reason to worry about passing it on.

I think POTS is like a lot of other illnesses (rheumatoid arthritis comes to mind off-hand) that aren't inherited per se, but can have a genetic predisposition. Noone in my family has been diagnosed with POTS, but my mother's side of the family has always been, er, a bit on the delicate side. None of them exercise or work strenuously and until I fell ill with POTS I always thought they were just lazy. Hehe, part of why I always pushed myself so hard is so I wouldn't end up like all the other women in my family. So while it's hardly proof of a genetic link for me, that and my own poor health were enough to convince me not to have kids of my own.

Excellent! Finding a good, knowledgeable doctor is such a big step!

**opens a bottle of champagne to celebrate, then remember it aggravates POTS so puts it away and grabs a Gatorade instead**

I think almost everyone here knows what you're going through. It's a constant uphill battle, and it does seem that many times I lose more ground than I gain. The worst is every time I catch a cold spending that week in terror that I'm going to have a relapse just b/c I caught a sniffle. And I had my birth control altered to stop my periods b/c I couldn't afford the downtime from them.

Have you tried physical therapy? I found that altering my exercise depending on how bad my illness is really helped me to get more control. Just a thought.

And you may feel lonely, but trust me, you're not alone .

Cheers,

Stacy

I've been having bad tachy and serious trouble breathing for a week and a half. Not long enough for me to start panicking--yet-- but it is unsettling because I've been so stable for so long. Then this morning I realized that my clonidine pills were different, blue instead of yellow. I asked my husband about that and he says it's been that way for a couple of weeks. Apparently my pharmacy switched Clonidine manufacturers. The switch coincides almost perfectly with when my troubles started.

Just as I don't want to panic, I don't want to get my hopes up either....but has anyone noticed a difference b/w different Clonidine generics?

Cheers,

Stacy

Edited to replace brain fog rambling with actually clarity