Jump to content

Recommended Posts

My son has had the usual POTS messed up sleep, specifically he seems to have a longer than 24 hour body clock. Neither of his POTS docs have prescribed a sleep med, though one suggested melatonin (which didn't work). Now we're trying a new primary care doc - in our desperate attempt to find one that "gets it" - and on the first visit, he prescribed xanax. He wants Mike to use it to get on a regular sleep schedule so that he can get back into school this fall (which I don't see as realistic - if only sleep were the ONLY issue....).

Anyway, we're a little reluctant - xanax seems like pretty powerful stuff just to go to sleep. I'm a little concerned about the addictiveness. And also is it even possible to "change" a sleep clock that's longer than 24 hours?

Thanks for any help...

Link to post
Share on other sites

I use it. I take a .25 mg tablet every night an it sure helps calm things. It has been a real help getting things back on track. I have been taking it for 4 years now.

Addictive? Maybe. In the grand scheme of things, to me, it is woth it.

Link to post
Share on other sites

I don't worry about addiction ...after 18 years of no sleep one would be insane with out sleep aids. xanax can relax me but not make me sleepy.

Klonopin works for me.

Also on the melatonin thing, don't know how long you tried it but for helping to restore sleep delayed syndrome, you often have to take melatonin for a couple of weeks to see an effect. I tried it years ago and after a few nights, nothing. Then I read if your body is low on it, it is a hormone and needs to build up...then it would help.

but due to alleged side affects in females (that I can no longer find online so maybe it was not true) I no longer take melatonin but on occassion.

I wish your son luck with the xanax as I have read on many message boards over the years it can help. Also if he can eat ok a good carb snack can help, too.

Link to post
Share on other sites

My son saw a new POTS doctor today. We discussed Dan's insomnia, among many other things. He was okay with Danny taking Melatonin (which helps a little, but not much) but said that under no circumstances would he ever put Danny on something like Ambien or other sleep aids. I guess he feels that they would be more distruptive to Danny's system in the long run. We didn't specifically talk about Xanax, but I bet that it would be on his list of things NOT to do.

This new doctor is insistent that Danny wake up and gets out of bed by 8AM every day, regardless of how much sleep he's had during the night. I think it's going to be very difficult, if not impossible, for Dan to do that, but I also know that this is something we need to try, even if it means the whole day is ruined until he adjusts. Dan could not go to school in the mornings this year because of his sleep issues. He will be a high school junior next fall and cannot have another year like this past one. This is not the first doctor who has told Danny that he needs to reset his rhythms.

This doctor has a lot of experience with POTS, so we'll give his advice a try.

Lenna

Link to post
Share on other sites

Just FYI

If you have been clinically studied by sleep doc and tried ALL the normal 'sleep routine' stuff, if you have DELAYED SLEEP disorder syndrome or your circadium rhythms are OFF...getting up at the same time EARLY will do nothing but make some of us more sleep deprived.

I once spent 36 hrs awake...and my sleep doc was stunned but realized, he had an unsual case that he studied for years to no avail.

So if GETTING UP EARLY no matter what does not help, do not blame the patient but a doctor that does not know horrible sleep disorders...and the fact adrenalin surges in ANS issues can whack out systems. :(

Also I can NOT fall asleep without the tv on (USUALLY A HUGE NO NO by book trained ONLY sleep docs) with ANS racing thoughts, a benign tv show or dvd helps me to fall asleep with my meds. I also have tinnitus really bad and it helps to masking out the 'screaming' noise in my ears.

Intense tv is a HUGE no no but some smart docs "get" the adrenalin surges and say calm or benign tv can indeed be a sleep inducer to some. (old tame movies, or shows like Mary Tyler Moore ) Just don't want to fall asleep to cable news shows. Yikes. B)

Like in ANS treatment, SERIOUS sleep disorders are not a 'one size fits all' treatment.

I guess this hits home with me because 20 years ago, progressive insomnia/fatigue and fast HR were my initial symptoms!!

I even flummoxed the sleep doc and never fell asleep on a govnt GHB study (that med was supposed to knock me out but sadly, did not)

Link to post
Share on other sites

I have used xanax for a couple years for sleep. Almost every night when I was on SSRI's. My doc said as long as i didn't take more than once per day, wouldn't have addiction problem. I have gone two weeks w/ out xanax and dont miss it (when I dont need it). It also comes in handy for those days were anxiety is a problem. My pri doc feels it is safer daily than say ambien.

Link to post
Share on other sites

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.

Link to post
Share on other sites

Not sure if this helps much, as sleep disorders are not just a simple "can't fall asleep thing" but if he doesn't eat many foods that help body convert to tryptophan, such as turkey, cheese, fresh cherries, some nuts... he may want to add this into his diet. It may not do a lot but it can't hurt to try :) Hopefully finding somethings that will help him get some sleep will help improve some of his symptoms, enough to be more functionable.

Link to post
Share on other sites

Lenna-

The concept of waking up your son at 8AM no matter what seems like the worst idea EVER in my book. I tried that in college (had an 8AM Inorganic Chemistry Class everyday so I was up at 7 no matter what). I was SO sick from that. It made my POTS worse, mucked up my sleep schedule even more (I couldn't fall asleep until 2 or 3 am) and generally created ****. That was the one class I skipped 5 classes of because my body refused to let me go. Let me explain refused: I would sit up to turn off the alarm and faint (not fall back to sleep, faint). I was nauseous all day, couldn't think to take notes in any of my classes, GPA dropped in ALL my classes; I just couldn't function.

I've had numerous doctors tell me to just re-adjust my schedule and I have attempted it multiple times. The last time I wound up in the hospital and was unable to walk for almost a month (this was 9:00AM five days a week) because my symptoms were so bad.

I guess what I'm trying to say is, doing this re-adjustment might not just ruin the whole day. I personally CAN function if I get one day in the week to sleep in as late as I want to. This schedule allows me to hold down a job. People with POTS, I've found, can't let ourselves get run down. If we do, it's back to square one. We have to listen to our bodies.

Your son is still growing, and like all teenagers needs extra sleep. POTS isn't just a mucked up sleep schedule. There is something physiologic going on. Also, just because this doctor has a lot of experience doesn't mean that everything he suggests is a good idea.

Best of luck to you and your son.

Sara

This new doctor is insistent that Danny wake up and gets out of bed by 8AM every day, regardless of how much sleep he's had during the night. I think it's going to be very difficult, if not impossible, for Dan to do that, but I also know that this is something we need to try, even if it means the whole day is ruined until he adjusts.

This doctor has a lot of experience with POTS, so we'll give his advice a try.

Lenna

Link to post
Share on other sites

You might want to try taking your son to a sleep specialist. If he hasn't had a sleep study, that could be beneficial too. Certain meds work better for certain sleep disorders. Knowing what exactly is going on with brain waves, oxygen, breathing, etc. during sleep could lead to better treatment.

I've been seeing a sleep specialist for the past year, and she has been fabulous.

I hope your son can get the help he needs.

Rachel

Link to post
Share on other sites

For the record...i was dx with Chronic Adult Mono in 85 (before ANS issues showed up and TTT confirmed in 98)

back then, I could fall asleep easy and even nap. BUT I still had to work jobs with my body's cycle...offices or exercise places where I did not have to be at work until 10am or noon...then I went to 9 to 5 job in 88 and by 90 my CFS aka Chronic adult mono was worse, insomnia became HORRIBLE and then out of control and tachycardia issues (shrugged off by holter monitor but noted as very tachy)

anyway as DelphicD said MAKING ONE GET UP is the worst thing to TRUE hard to determine SLEEP DISORDERS as of there are MANY.

Google Night Owl Syndrome or Delayed Sleep Disorders and other things.

It is NOT as easy as making somebody get up EARLY "no matter what'. That can be like making somebody go around 'drunk with fatigue' and depending on their job or driving, is dangerou as well. I also recooment a GOOD SLEEP SPECIALIST!!

Link to post
Share on other sites

I was diagnosed with non 24-hour circadian rhythm disorder by a sleep specialist. My sleep progressively shifts forward so that my "nighttime" is later and later, eventually drifting into morning, afternoon, evening, and back to night again after a few weeks. I tried everything at the beginning to stay on a regular schedule, but the harder I fought my body, the worse I felt. I agree with others who recommend a sleep doc. Documenting your son's sleep times on a calendar (including naps) is also a good idea.

There are some non-drug solutions to rhythm disorders. One that might be helpful is bright light therapy. Is the sleeping problem new for him? It could be a response to a medication your son is taking. These are all just ideas. A sleep doc is a great place to start if you are wary of starting strong meds.

Link to post
Share on other sites

Momdi

Do a search and take notes of the sleep disorders listed here...like if your son can NOT EVER "CHOOSE" or fall asleep at a certain time, that sounds like me with a day/night rhythm out of order but my sleep doc that treated me for years in the 90's did NOT recognize this. I am trying to do a saliva test this week when I get wound up at night before taking my meds and start with PM Cortisol levels ...

anyway, ask around in your area or get names of sleep doctors or centers and google them online. or call DIRECTLY and asks if Dr. So and so deals with difficult to treat insomnia/ sleep disorders as opposed to routine insomnia (SHORT term and often helped with a 'fixed sleep routine'. or sleep apnea.

If not, call the next closest centers or ask different doctors you see or people you know. I found my current ANS doc (an endocrinologist) 10 years ago on my own "letter writing campaign".

I had been seen for 8 years by a great Chronic Fatigue Syndrome doc who was understanding and compassionate but dismissed my GRIPE of "I feel better when I lie down than when sitting or standing up." THE CFIDS CHronicle even did a study about TTT and he said he found them of 'little value to the pts he sent for one".

Well, I talked to a shrink and showed her my letter. I sent it to 12 doctors and lo and behold two called me personally and the one I now see had a girl call me (TWO MONTHS after he got my letter) and it was 3 months to see him. But he has been a GOD SEND.

So if you can't get answers on the phone for your son, do homework and if have to, compose a letter. Nowadays some sleep clinics will answer email.

Best of luck and KEEP US POSTED!!

Link to post
Share on other sites

I think that once sleep is established and a loose schedule approached is wise. My husband treats alot of people with chronic pain and the truth is that if you are getting th right treatment it "balances". Folks who just take drugs randomly to get aa need met are much more likely to become addicted. I am not nor have ever been on the drug companies boards or employed. God one he. I would ask him if he is comfortable trying this. It really eas the only thing that helped for a couple years. Now I have a sleeper that works. Miriam

Link to post
Share on other sites
  • 2 weeks later...
Lenna-

The concept of waking up your son at 8AM no matter what seems like the worst idea EVER in my book. I tried that in college (had an 8AM Inorganic Chemistry Class everyday so I was up at 7 no matter what). I was SO sick from that. It made my POTS worse, mucked up my sleep schedule even more (I couldn't fall asleep until 2 or 3 am) and generally created ****. That was the one class I skipped 5 classes of because my body refused to let me go. Let me explain refused: I would sit up to turn off the alarm and faint (not fall back to sleep, faint). I was nauseous all day, couldn't think to take notes in any of my classes, GPA dropped in ALL my classes; I just couldn't function.

I've had numerous doctors tell me to just re-adjust my schedule and I have attempted it multiple times. The last time I wound up in the hospital and was unable to walk for almost a month (this was 9:00AM five days a week) because my symptoms were so bad.

I guess what I'm trying to say is, doing this re-adjustment might not just ruin the whole day. I personally CAN function if I get one day in the week to sleep in as late as I want to. This schedule allows me to hold down a job. People with POTS, I've found, can't let ourselves get run down. If we do, it's back to square one. We have to listen to our bodies.

Your son is still growing, and like all teenagers needs extra sleep. POTS isn't just a mucked up sleep schedule. There is something physiologic going on. Also, just because this doctor has a lot of experience doesn't mean that everything he suggests is a good idea.

Best of luck to you and your son.

Sara

I think that one of the most frustrating things about POTS is that there is nothing that works for everyone, and nothing that works for no one. Everyone has to experiment with different strategies to see what works for them.

I know that forcing a person with POTS to wake up at a certain time each morning can potentially have devastating effects on them. It would have been impossible for my son to get up at 8AM every day last fall or winter. But he's been a bit better for the last 2 months or so, and it is within his realm of possiblity now. We're starting out slowly... For a week I woke him up at 9AM every day, then 8:45 every day for a week, and now we're at about 8:30. It still takes him about 1/2 hour to get himself out of bed, and another hour or two before he's ready to start the day. But that means he's starting his day at 10 or 10:30 instead of noon, so we're making progress. It also means he's able to eat a little earlier in the day, so breakfast has become a word in our vocabulary once again. There have been a few days when he just could not get up, and I let him sleep an hour longer on those days. He also gets to sleep until 10 on Saturdays.

The goal, of course, is to get to school earlier next fall.

This may be working for my son because we're addressing some of his digestive issues. The thought is that if he's digesting more effeciently, his digestive system isn't keeping him up all night. He's falling asleep more easily at bedtime (still using Melatonin) which may be attributable to his digestive improvements, or may be attributable to getting up earlier. Or maybe to something else entirely...who knows.

Link to post
Share on other sites

I think its worth mentioning that many high schools are starting later. I was awarw when minneapolis started in 1997?. Teens body clocks work differently and it has increased learning, attendence..etc.

Miriam

Link to post
Share on other sites

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.

Guest
Reply to this topic...

×   Pasted as rich text.   Paste as plain text instead

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.

×
×
  • Create New...