wireless

***** about the neuro's attitude. POTS patients are often misdiagnosed as just having anxiety. I hope you can find a decent doc to get referred, maybe find a good dys doc who doesn't need referral.

I think it's worth getting one done if sleep is a big problem for months and months. In CFS and fibro, it's common to not be getting stage 3 & 4 sleep. Also there are circadian rhythm disorders. I am getting mine tomorrow. Worst case, I guess they find nothing helpful. Best case, my quality of life could improve by a large amount. You could always see a sleep specialist and he/she will let you know if you need a sleep study or not based on the questionnaires and what you say.

Vyvanse makes me get worse quality sleep, at least for a week. My sleep quality often ***** anyway, but to have something interrupting it further just makes it horrible. Yet I think I need vyvanse or something else for ADD, but maybe later. Actually on vyvanse I did get very sleepy at night as it was wearing off, but that sleepiness didn't translate to falling asleep. I have some anxiety about sleeping (I think that sleeping patterns and habits from childhood carry over majorly), and general life worries make it harder. Am getting sleep study done.

Thank you for posting these links! The first seems to apply to me too, I am reading with interest, and found the second link interesting. Great to know about this.

Have you read about insulin hypersensitivity? (I forget their little name for it.) I am wondering if I have that one, and it seems to be related to the hypokalemia thing.

It would be bad to have a low potassium level (blood test), but yes the ratio would be important as well. I had a 24 hr urine sodium level check.

I bet most dr's don't know much about this and will say see a psychiatrist

I've had my own little weird thoughts about how my ADD manifests very differently from the other people that I know, and I thought it was mostly due to being chronically ill (starting at a young age). I'm almost inclined to believe that SCT is ADD+chronic illness (like some low grade viral infection) or pediatric malnutrition, but perhaps their research shows differently already. I've noticed some of those characteristic SCT things being much more prominent at times, and much less at other times, depending on how my physical activity levels and sleep have been, perhaps mine is just mimicking SCT though.

Feel free to PM me about these or other topics BTW.

My dys specialist warned me not to lie down after my 5 mg doses.

In papers, Dr Low et al wrote that at a 5 mg dose there's not supine hypertension risk though. If it were frequent doses then I think the risk goes up, he was talking about 3x a day I believe.

I'm pretty sure it's something I have/had, it's improved over time with massage/physical therapies (types such as myofascial release) and occasional muscle relaxants.

Yep, mine varies a lot, hopefully the sleep specialist that I am finally going to will be able to help my sleep issues. It's not the only cause but maybe I could have more of my better days. I don't think that ALL dys people have debilitating fatigue though, some percentage do manage to have a job and kids and sort of normal life.

Hugs.

I just pushed myself harder and told myself I was just lazy. I'm now 42, and I can't seem to push anymore. Is this now my life???? I hate being so wimpy and feel so worthless. I'm an overachiever at heart, and I hate being dependent.

I know the feeling.

I think that we get ourselves more stuck in illness if we pushed ourselves for 10 or 20 years Lots of healthy people seem to push themselves and get pretty exhausted by the time they are starting to reach their career goals, but we were already sick in the first place, so... well I don't know what my point was there.

Is my MD just being optimistic, or will this go on for the rest of my life?

I think they look at the literature and see that most POTS patients recover, and that's what they pass on. Personally I think it's mostly the younger ones who heal, and the ones where onset was not related to their lifestyle being high stress. .

Hm, maybe you're in a flare-up and will get a few notches better suddenly, seems to happen a lot.

I have not taken Xanax very much, the times I did take it, usually it makes me depressed and irritable. Melatonin seems to mess me up the next day. Ambien was ruining my life (even though it felt nice to take a pill and fall asleep) - took me a long time to realize it was the Ambien. Rozerem sounds good, it seems to only work for 1/2 of people and it gives the others major insomnia.

I am new to it and like it too. It's somewhat like midodrine. In a study they found mestinon did the same type of good BP raising as midodrine for POTS, but it has less side effect.

Summer, you got it right.

Sort of depends on your doc. Some will really frown upon it, others don't mind. It depends on what you are doing too, stopping something that doesn't work is often fine, if you know why you needed it. It's not such a big deal to re-try what you were prescribed it in a past.

I'm ADD too and impatient, I am trying harder to give meds more time. If that's doing well for you for a few days, I wouldn't jump to conclusions about it. I hope it does continue to work well for you.

What part of ASAP do these people not understand. I am getting worse by the day it seems. Not in just the episodes, but Trying to get through my day accomplishing the bare minimun is too much for me. My doctor put ASAP on my reports. I don't think I can make it till the end of summer. I wonder if I can call for an earlier appointment. I have been on pins and needles waiting and now I just feel like a deflated old balloon. I am so frustrated.

Yes, call. And if they don't have anything then call back in a week to see if they've had cancellations.

Unfortunately sometimes waiting 1-2 months *is* "getting in quickly", but I bet you can get something a little better. Or try a different place altogether?

Maybe you should try going off more and more of them / staying off, but keep a small supply of each in case. Also obviously diet, sleep, fresh air, sun, etc can make an enormous difference.

Don't know much about this, but I would agree with your plan of when to take it. I'd try to take it on a worse-than-average night but not ones that are really worst.

Ambien ruined a year of my life. I liked it, it made it easy to fall asleep, and I just thought I was (separately) getting worse on a bunch of symptoms. Finally I realized it was mostly Ambien. You aren't supposed to take it for more than a couple weeks (but docs always thought it was benign). Personally I don't do well with benzos either.

Well, upon reading your post my ideas are... Telling people politely "awww, it's nice of you to be concerned. I'd much rather talk about something more fun and positive." And maybe launch into a topic right away. At the park, sometimes you might be able to ask someone else if they could give your kids a push, if they are standing right nearby pushing their kid anyway. Possibly say you are feeling a bit dizzy or nauseous. Maybe they can play frisbee or something else?

I read your post. That's terrible. Hugs and best wishes.

Totally could be something to help your circulation.

I had an ADD friend who was very fidgety (hyperactive) and noticed that I was too. (I am ADD too, or at least seem that way due to disorders.) I don't think I'm usually fidgety though, only when I have above-average energy.

I did/do the opposite, tensing up my legs and folding them. Helps my blood pressure or something, like they suggest for POTS. But I caused myself more problems due to having such bad and weird postures for so long.

Yeah keep trying I suppose Methylphenidate is in Dr. Grubb's paper as an alternative for people who can't tolerate Midodrine, and a lot of POTS people have tried Adderall which is similar to Ritalin.

Aww I've had jaw/neck issues that have been difficult, but nothing so severe. I hope that specialist has some good treatment options for you. If you can spend the money, I would suggest some massage/accupuncture type therapies. Regarding the regular docs, yeah that might not be worth it, getting such a lousy reponse. Perhaps if you ONLY said migraine then they would just give you a med for that? Also maybe they could give you Lyrica or something else besides a narcotic.

If it's a long-term thing, I'd say soft tissue problems. Especially if there are related symptoms like neck pain or scoliosis or if you can't do diaphragmatic breathing with relative ease. I wouldn't be so sure about being allergy-free though.

I think it's best to stop wanting people to understand beyond a basic level. I don't mean to sound harsh or anything, as I have the same problems and really struggle with it. If they really wanted to understand more, then I guess they'd read about other people's experiences with it. For some people, just reading the words, it won't sink in much though, and they would do better with watching the TV clips. People who are close to you should read books for the family members of those with chronic illnesses.

CFS = Chronic Fatigue Syndrome

CFIDS = Chronic Fatigue & Immune Dysfunction Syndrome

If both started when you were 13, then it sounds like the attention problems are related to the NMH. I definitely think that some people are misdiagnosed as having ADD and learning disorders and more, when it's a medical thing. Food allergies being a common example. They aren't supposed to diagnose ADD unless you had symptoms when you were young, kindergarten age, that teachers and parents noticed. Around puberty seems to be the most common age for onset for OI's.