Sleep Problems

[joanie]

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

[Merrill]

Hi, Joan. Sorry to hear your daughter's having a tough time. A lot of people on this forum report sleep disturbances--whether it's more than in the general population we couldn't really know. You can read many posts on the topic of sleep and/or sleep study by doing a search for those terms. Just be sure you search a while back--say in the last year or so. (It hasn't come up in the last month or two.)

I'm unclear as to whether your daughter had a traditional sleep study or not. It sounds like if she did, she didn't sleep...??? Is that what happened? Was she very nervous? (I slept more soundly than I typically do at home, which the neurologist told me is normal--if you remove a person from the environment in which sleep difficulty typically takes place, they tend to sleep better. But I digress...)

It would be good if they could diagnose whether she has sleep apnea episodes or not. (THere are 2 kinds: obstructive apnea, which is treatable with a CPAP machine, and central apnea which you can't do much about.) In any case, a mild sleep aid may be all she'd need to get some rest at night. There's a new generation of sleep drugs coming out very soon--but Ambien is supposed to be excellent in the meantime.

Good luck,

Merrill

[shelby]

I had to have that wrist thing on too. It was a part of the PRC clinic that they have up there. We called it the house arrest bracelet because we got weird looks when we wore it. When I did mine I got odd results too. Like lots of late night activity when I was sleeping. I was told that was not normal and that I should look into it. So I am not sure if it is just these two cases, but it seems like we are getting a pattern going here.

Shelby

[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

[shelby]

Hi Joan,

Yeah I am 23 so I guess that makes me an adult these days. lol. What pediatrician did they send you too? I swear if they tell you to go see Dr. Porter I would think twice about it. I mean he is a good doctor, but he didn't do anything for me. I went there a few months after I got sick and tried to get help. He did at TT and said that there was no problem and it was all in my head. That didn't help now did it? So it took another 2 years to get this all figured out. Thus my dislike of him. I think that he had it figured that I had NMH, so he did a tilt table where they lay you down and then stand you up and then inject some kind of drug to get your heart rate going. The latest TT that I did they just did one where they stood me up and measured my bp for 10 min to see if there was a change. There was at about 5 min 30 sec. So that gave me the correct diagnosis finally. Only took 5 years. I am not discouraging the Mayo Clinic at all...I really love the people up there and they have proved to be very helpful. I guess no matter where you go you are always going to find a doctor or two that you don't get along with.

I hope that things are going well for your daughter. I understand the not being able to fall asleep. I am trying to get to bed earlier these days since school started. I start to go to bed at 9 and fall asleep about midnight.

Shelby