scarfgirl

Another thing I should get checked out but haven't.

Also a major problem for me. Before I got sick, my IQ ranked me in the top .4 percent. Now I can't even focus well enough to take my driver's test, something EVERYBODY is supposed to be able to pass. I keep telling the doctors what a problem this is for me, but they just ignore it, or worse, try to put me on anti-depressants because 'stress' makes it hard to concentrate.

I'm handicapped physically, but it's the cognitive issues that keep me disabled. If I could think, I could work.

Huh. It really helped my symptoms, and gave me TONS of energy. It wreaked havoc on my sinuses though, and I never got around to trying it in a non-smoked form.

Sorry your experience was so bad. Hope you get better soon.

I've had so much improvement lately that I don't worry about it so much, but back when I seemed to be in constant decline (one step forward, two steps back) my worry was that I'd just keep slowly but surely getting worse and worse until I ended up kicking the bucket to pneumonia in my 40s. That I'd get so weak and tired that my body would just completely shut down one day. No idea if it was a realistic fear or not, but it at least SEEMED that's where I was headed.

After a long airplane ride my calves are killing me! And I also get an unpleasant tingling at night, not really pain just uncomfortable.

You poor thing!

Chaos - how long after starting Z/Z did you start to notice a difference?

There's no rule saying you always have to upbeat on these forums.

I'm FINALLY starting to recover some from a relapse that lasted.....well, a long time. Just the other day I thought, "Hey, I actually feel like I might be able to move around a bit. Great. Now I get to start all over AGAIN." Can't even be happy about feeling good because I know it's just part of the cycle. And now I get to add my spouse dumping me and pushing me out of my home to my list of 'Reasons to quit trying'. I won't quit, but **** it's hard sometimes to keep going.

You're not the only person suffering, but it sure does seem that way when most of the people around you are healthy and oblivious. Forums like this are a life saver because it reminds us that we're not alone, and that we're not crazy.

Hang in there sweetie.

You just beat me to the punch! I saw an infomercial for those leg massagers and wondered the same thing. They sure look weird, but the idea sounds....comfortable.

It takes FOREVER to build up the stamina necessary to perform 'normal' forms of exercise. If you try by starting out on a treadmill you'll just make yourself sick. If you can do a recumbent bike, great, but even that may be too much. I can now use a treadmill on my good days (but never 5 miles, oh my!), but I had to go through **** for several months to get that far. I highly recommend seeing a physical therapist that's willing to learn about dysautonomia and working with them to start off.

I also really recommend, if you can, using the Wii Fit game. Because it focuses on posture and core strength--a more eastern approach to fitness, it provides you with relatively easy exercises that really do a lot to build up the muscles that give us a better quality of life. And while I'm extremely sensitive to coat hanger pain flare ups, I surprisingly don't experience them with WiiFit.

Any doctor can set up a sleep lab. Only the ones certified by the American Academy of Sleep Medicine or some other specialist program are truly qualified to assess a sleep study. There is this nasty little type of insomnia that I'm betting most of us have: hyperarousal insomnia. It is caused by a state of sympathetic hyperarousal, aka too much norepinephrine. This will stop you from getting to sleep and disrupt the sleep you do get. It leads to that tired but wired feeling and deprives a person of the deep sleep that resets the neurotransmitter levels in the brain. Some of us are screwed up hypothalamically and in our circadian patterns. A sleep study won't show that. POTS definitely effects my sleep and sleep directly effects my POTS, so for a doctor to dismiss it as not relevant is just wrong. If you get a sleep study, make sure the doc that administers it is qualified.

Thanks for that warning. I'll make sure to check on that.

If hyperarousal insomnia won't be noticed....then what the heck will they be looking for, apart from narcolepsy and RLS?

My son had a sleep study done last September. They diagnosed him with Restless Leg Syndrome. They also did not take his POTS into consideration, but they also wouldn't give him any medication that they normally give for it because of the POTS. They had my son going to a sleep psychologist trying to get his insomnia and eratic sleep hours turned around, but she wouldn't listen to the other symptoms he also had to deal with. The psychologist wanted him up and out of bed every day at the same time. She didn't understand how he wakes up nauseated every day and can't get out of bed. So I stopped taking him.

Starting 2 weeks ago, his sleep completely turned around though once he started taking vitamin D. He falls asleep every night by 11:30 and is waking up in the morning. It has only been 2 weeks, but I'm hoping it holds out and hopefully doesn't revert back.

So basically the sleep study just added another diagnosis, but they weren't really able to help. My sons POTS doctor took the route of giving him a medication for his POTS that also had a sedative in it to try to help him sleep (Doxepin). It worked for a couple of weeks but then stopped helping him sleep. So, now it's the vitamin D.

I love my Vitamin D . It hasn't helped me get any sleep though.

Having a sleep study done in a little under two weeks. Not really expecting much, since despite filling out a long questionnaire about my health, the doctor showed zero interest in my dysautonomia, and is looking at my sleep problems as a completely separate issue. I find anytime a doc ignores my chronic illness he's probably not gonna be right about anything else, since EVERYTHING goes back to the POTS. So I'm getting tested for narcolepsy even though I know **** well I don't have it.

Anyhow, wanted to get feedback from peeps who have also had a sleep study done, so I can compare my results with others. Also wanted to know if anyone actually got some of their insomnia, etc. fixed by having a study done.

Cheers!

S

oh yeah. really aggravating since the desire has come back, but the big finale is still absent. Probably a good thing I'm not seeing anyone right now. I'm fairly certain it's one of my meds though, not the POTS itself. When the POTS first started, sex and especially orgasms would cause me to lose consciousness, making the whole act undesirable for me.

I take .2mg of florinef a day, and take a daily potassium supplement to offset the effects. I need florinef to counteract the BP drop I get from my beta blocker.

If you've only been on it a short time, and are tapering off gradually, there really shouldn't be any side effect. I went off of florinef once after being on it about four years. I reduced my dosage over a period of a couple of months and had no side effects. Bad feelings may just be you losing any benefits you were getting from it. Measure your BP and see if it's getting lower, that may be one way to tell if the florinef was helping you.

I have sometimes pondered-in a mostly silly manner I should warn- that since women are so much more likely to develop POTS than men, that perhaps a sex change, or at least hormone therapy would be in order for me. Maybe if I were a dude it would go away . Not only would I be able to return to work, but I'd probably get paid what I was worth for once!

Florinef does indeed have a suppressive effect, which is why your doctor wanted you to taper off of it instead of just stopping cold turkey. If done gradually, your body should start up its normal production cycle.

Are you taking florinef for POTS or were you taking it because of suspicion of Addison's? I don't quite understand why your doctor wants you off of it. If it was helping with your POTS then of course you'll feel worse when you stop taking it.

There was a point where stomach bloating, while probably not my worst issues, was definitely my most annoying and uncomfortable one. Normal BMs, but felt like I needed to pass gas and couldn't.

I was also having problems with my blood sugar(I would get the shakes if I didn't eat every few hours), and in trying to fix that I accidentally got rid of the stomach problems too. I cut out all sugar and ate LOTS of fiber. I switched from white flour/rice to brown and stopped eating processed foods, as much as I could anyway. Gradually the stomach problems just went away. So did the shakes. Not really sure what specifically was causing the problem, and I try to pay attention when it flares up again. Like today for example, I feel bloated and have a feeling it has to do with that small bag of chips I ate earlier (needed the sodium!). Don't know for sure though.

I don't have panic attacks, but stay in a constant state of anxiety. I'm not anxious about anything in particular, just this general feeling that something is wrong, or something bad is about to happen. It's a state of constant alertness and 'readiness' that is very wearying. I even have nightmares at night that play out the anxiety (running away from something, back in school and forgot about a test, etc). Ativan helps, but it seems designed more for the occasional attack than as a constant treatment. I'm also taking Klonopin, but I can't tell that it does a thing for me.

I'd really like this feeling to go away, as it's almost impossible to concentrate like this, and everything, even just watching TV, seems to exacerbate the problem.

uh-oh, what if I'm visiting doctors in diff states?

Oh man a cough will put me right down. It's 50/50 whether I'll pass out or throw up whenever a coughing spell hits me. And a cold puts me in bed for a lot longer than two days. It takes me forever to get over the lightheadedness that sinus congestion brings on.

No experience with Mestinon, just wanted to wish you good luck.

Once my divorce is final I'll have to go on Medicare part B. Of course it hardly covers anything, so I'll need to supplement it big time. How do I figure out which plan is best for me? Every education site is really aimed at seniors, but I need a plan for the young and disabled.

If anyone else with POTS has had to do this, I'd love to hear about it.

Hmm.....I think I'm gonna drink a cup every day and see what happens.

I have noticed my stress levels are higher when I've had caffeine. I don't know if the caffeine itself is triggering some sort of response, or if I'm just finally awake enough to feel 'stressed'. It's not a pleasant side effect, but worth dealing with to gain some acumen.

@KC: what herbal remedies are you referring to?

I'm going to continue using caffeine, right now I'm drinking a cup every other day (really don't want to get addicted since that'll cancel out any benefits). How can I respond to this email in a way that will get the doctor to understand that this is important to me? It's got to be significant that caffeine gives me such a huge boost, and I don't won't him to write me off just b/c I'm not improving like he thought I would. It seems like doctors are great at listening and understanding....for about 3 visits. If you're still a mystery after that, it's because you're difficult.

Also, if anyone has suggestions as to safer/more effective alternatives to caffeine or a way I can ingest it semi-regularly without forming a habit, please let me know!