joanie

the gene for POTS has recently been discovered- I think by Mayo.

Both a Mayo Dr. and another one commented that large pupils can mean POTS- and explained that just like other things (veins, etc) don't constrict well. so with the eye. It is the reason why light often bothers you- because the pupils can't get smaller. Joan

OK. My sixteen year old was diagnosed with POTS several years ago. Up until now, she can be very specific about what pain is where- muscles, joints, (also has EDS). Lately, she has been complaining that things hurt all over, in a different way, and can't specify where. Does it matter if she has fibro, too, in terms of treatment? Should we try and find out? Joan

Sorry to be so dumb, but is coritsol the thing that governs wakefullness? If so, Mayo found that my daughter's levels day vs. night were reversed.Any comments?

My daughter has always had pale, almost transclucent skin. Just before she got sick, she started to dabble in modeling. The makeup poelpe made this big deal about the skin- how they hardly ever saw it this "luminescent." When we first saw Dr. Grubb, he called it "POTS " skin. I thought it speaks to the link that LIndz has with EDS- the collagen in the skin being a little different (scaring, etc.) Don't know for sure.

I think it would be effective like that. My 16 year old uses it when she wants to go out with friends- it seems to help her stamina and allow her to walk farther. She still pays for the walking, but she says it helps. Taking it everyday seems to worsen her stomach...Joan

When my daughter uses the XR, her twitching and flailing at night become much more pronouced. (She does this, anyway.) I think it tries to keep her muscles active, while her other meds are trying to put her to sleep. Just what I think. It works better for us if she only takes it during the day. Joan

Sophie, looks like you and I are destined to be on the same topics...I wanted to give Lindz 5HTP in an effort to boost the level of seratonin in her body. (She is already on SSRIs, but, it was suggested to me by one Dr that SSRI's can only recirculate the seratonin you already have. I guess 5http is a way to get your body to manufacture more, or so the thinking goes.) I gave her one capsule (I found it easily at the health food store) and she developed a migraine that lasted for days. And, she isn't really that prone to migraines. One Dr said that it was because her body was already so defiicient in things that it sent it into a tizzy. Another Dr said that was nonsense, the http had nothing to do with the migraine.. I haven't given her another one...maybe if I started smaller...Joanie (thanks for the article on Dr. Sharf- that's a name I haave heard and wonderd if I should take Lindz there...)

Thank you so much for your interest and info, and concern. We will keep at it...Joanie

Yes, one of the local dr's did insist on a sleep study with the electrodes- but she didn't go to sleep all night. They didn't know what to do with that. She also had an MRI of the brain- said it was OK. .I know that the GHB is not supposed to have residual effects, but, with her, I think it is . When she comes off of it for a few days, her appetite is much better. (She is losing weight like crazy.) Thanks for the study...Joan

Thanks to you both. It is my 16 year old daughter who has POTS. Besides being on the DYNA website, I have been looking in at yours for a while. What a great group you all are!! (as are the DYNA parents.) For some reason, I couldn't post on here, but I finally bothered Michelle about it and she set me straight. (Michelle, you may not remember but we met several summers ago at the DYNA chill. I kind of lost it at one point when I realized just how sick Lindz could get..you helped a lot. ) Well, we are there, folks- pretty sick. But- to the Xyrem. Sophie, I had never seen this mentioned anywhere else, so it brought me out of "hiding." When Lindz got her POTS diagnosis at Mayo almost 2 years ago now, she really didn't seem to sleep at all. No difference with day or night. We kept getting blown off about this- but we knew that she really couldn't sleep. Mayo did pay attention on the second visit. They put an actigraph on her wrist for two weeks to measure movement- they can tell with this, they think, if she sleeps or not. (THe dr. recognized that an overnight sleep study wouldn't do it, because she probably wouldn't sleep.) When they contacted me with the results- they said this was a very unusual and extreme situation- that she wasn't getting any significant sleep at all. Well, we knew that. I asked them if they could fix it (MY gold standard at the time- now I know that helping it would have been plenty..) and they said they didn't know what "it" was. We didn't return, because she was trying to start her soph year in high school, and it wouldn't have been a quick trip. Well, she made it 2 days, and hasn't been back since.(She should be a junior.)

ANYWAY- one of our ancillary dr's suggested she had a sleep disorder at the route of the POTS "outbreak"- seemed like as good a theory as any. He finally put her on Xyrem. It is a liquid- highly controlled (it's the date rape drug) and was deveolped for narcolepsy.I'm told that narcoleptics fall asleep during the day becase their sleep at night is not deep enough.I t tastes bad, causes her to twitch around, you have to play with the dose, give it every 4 hours, if the dose is too low, you won't go to sleep, upsets her stomach so badly that she has to take zofran before to keep it down, etc. etc. I guess with sleep disorders other than narcolepsy, you can go way up on the dose. (the nausea is supposed to subside after a while, but with some it never does.) When she is out, she is out. She wouldn't wake up for anything (a little scary) and if she gets out of bed and falls asleep elsewhere, I can't get her up to move her. HAving said all that, it DOES regulate her days and nights. She is basically up during the day, and sleeps at night. (It seems to be a constant, changing battle to get the dose high enough to sleep, but not so high that she feels drugged and sick to her stomach during the day. Of course, with POTS, its' hard to tell where that day time feeling is coming from.) SO, I guess she is better off on it (she reluctantly agrees. You don't have to take it every night, and when she takes a few days off, she is begging to go back on it.) BUT- i really haven't seen amy improvement in the POTS symptoms- in fact, they are getting worse. What I don't know is if they would be even worse still, at her age, if she wasn't on it. The Dr had hoped she wouln'dt need it after 6 months or so- but that hasn't proved to be the case. Two of her other POTS dr's say they have not seen sleep this bad even with other POTS patients..I don't know about that, I have spoken with a few other moms who say their girls are just as bad...And yes, Sophie, we did have to add a tranquilizer into the mix, to quiet her thrashing that happens before she actually goes out.

I know this is a REALLY long introduction - but this is what I know about Xyrem, and I would appreciate it if anyone has any more info or ideas (Should we go for a week long sleep study- would they be able to offer any other helpful meds?) etc. etc. Thanks for being there. Joanie

I read several week ago in a post that someone participated in a Xyrem study (the drug used for narcolepsy.) Has anyone tried this for severe sleep deprivation associated with POTS? thanks.

Michelle, I think a forum on alternative therapies would be great. I have talked to several people who have been helped by acupuncture. Joanie

Thanks to both Merrill and Shelby. I did do a search of past postings (didn't know you could do that) and it was very interesting. My daughter did not sleep at all during the study- she usually can't sleep until about 5am, and they had to have everbody out at this hosp by then. NOW I'm understanding they may have been looking for apneas (which I wouldn't have thought she had,but ,looking at the postings, maybe.) The wrist actigraph showed a lot of muscle movement, but it appears that with POTS you have this, and maybe it wakes you up. what about a med to calm the muscle movements? SHelby, if you go back to Mayo (are you an adult? If so, I guess you see diff Dr.s than we do) please let us know how they want to treat this. With my daughter trying to attend some school, I am reluctant to run her back there...Joan

My fifteen year old with POTS has serious problems sleeping. At Mayo, they put a 2-week actigraph on her wrist (a computer that measures muscle movements) to determine sleep patterns. It came back that her sleep was very unusual and very extreme, that she wasn't getting much significant sleep,and they wanted her back. Meanwhile, another Dr. told us that they were on the right track, but they were not going to be able to "fix" it. Then, a third hospital closer to home (it's hard to keep traveling with a sick child, as you know)

insisted we do a traditional sleep study. Well, she didn't sleep at all, as I told them she probably would do. Has anyone had experience with following these leads on sleep? Is this just POTS, or, if it is "extreme," can sleep specialists help? Joan