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No Nartcotics, Sleeping Meds, Etc Per Cleveland Clinic Chat. But Don't Some Of Us Need These?


iheartcats
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I have to take my occasional Ambien or my sleep would be horrible. I seem to get off on my sleeping time...I'll eventually be up all night. It helps 'reset' things. Also, if I'm overly anxious/worked up it also helps me sleep.

As for Narcotics, I don't think I've had to take Tylenol 3 or Vicodin since my Wisdom Teeth removal years ago, before POTS.

But the Ambien seems to be OK. I may be a tad more tachy the next day but that could be from dehydration overnight, stress from not sleeping well before, etc. Nothing really out of the ordinary though.

Does anyone use Sleeping Medication or Narcotics without issue? Why does Cleveland Clinic think it's so bad? My EP thinks my sleep is important and knows I take Ambien sometimes.

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Well for me, narcotics, sleeping aids, and pain killers don't seem to work on what they're treating, they just seem to suppress my respiratory system pretty badly. That's why I can't take em, but I can't confirm that's why they don't want others to.

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I am able to use Nartcotics/ Sleep Aids/ Pain killers without issue.

Every time I fall severely ill with bronchitis the doctors give me hydrocodone. On occasion I use it during particular major episodes to dull the pain. I also take Ambien CR nightly. Without it I would only get a few interrupted hours of sleep, if any at all.

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Is there any more information as to why, and for whom, Cleveland Clinic says this? CatLady, You were on a webchat? What did you tell the doctor about your diagnosis for him to warn about this? A webchat for what malady? TIA

BTW, for me personally, I'll have to agree. I stay away from Ambien because it messes with my heart rhythm and speed.

I will not touch narcotics because, personally speaking, I think I'm missing the enzyme to properly metabolize them. I haven't been tested to see if this is the case. In any event, taking a narcotic makes me feel poisoned and wish that I were not on this planet, KWIM?

CatLady,

If you are doing okay on the Ambien, I wouldn't concern myself too much.

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I've tried Ambien and other sleep meds, but they've never worked for me. Trazodone helps me relax somewhat and helps me to fall asleep, but it certainly doesn't give me a 'good night's sleep'. I do take 1/2 a Percocet at the lowest dose on days when my pain is too much, and it seems to take the edge off. If I take it too often, it lowers my BP, and I'm low enough already!

J

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The neurologist at Mayo gave me the same advice... no narcotics. I don't take anything for sleep besides benadryl or a rare phenergan (if I'm very nauseated), and he didn't say much about those. But he said that narcotics exacerbate pooling, which he believed to be my core issue, even the cause of my hyperadrenergic state. He wanted me to do all the non-pharmaceutical measures possible to control pooling/low volume like compression, salt, fluids, strengthening. I do all of that already. He also wanted me to start mestinon and some other meds.

We've been trying to conceive so those meds were not an option. I have constant burning skin pain which is worse at night and makes it so hard to sleep. 1/2 a vicodin is safe while trying to conceive, and is my only option for pain management right now.

Honestly, when I'm in a bad pain flare or have lots of adrenaline going through me, it would be worse NOT to address the pain/adrenaline. I just would get sicker. A little narcotic for the neuropathy helps me function better in the end. More than 1/2 a pill, though, and I'm too groggy.

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some of my first ans symptoms, in retrospect, were in response to opiates. I was given demerol for some painful procedures, and felt nauseated, lightheaded, and short of breath every time I'd sit up when the procedure was over. I don't know that it's completely contraindicated, but should be done with close monitoring.

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it is more important to find SOMETHING that helps INDIVIDUALS sleep than to listen to experts.

I've not had refreshing/quality sleep in decades. but losing more sleep=Worse POTS.

I use a med to calm GABA receptors & works like a charm most of the time. Klonopin.

Some docs don't like Ambien and claim it should not be on the market and it's like Roofies. Many docs have differing agendas/mindsets which is fine but don't make a patient suffer with more insomnia due to your ego.

So, that's my two cents on this subject.

My sleep doc I used to see really pushed Ambien but he got paid to do SPEECHES for them but even he finally understood, Klonopin wokrs for me. Also popular drug for RLS Restless Leg Syndrome.

:(

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Futurehope - I read the Cleveland Clinic Web Chat transcript from the other day. It looks like sleeping meds/narcotics should be avoided for Dysautonomia. Here's the line:

"anniekins: I have read that using opiates and some other medications can cause or make dysautonomia symptoms worse. If this is true would it be likely to make symptoms better if these drugs were stopped?

Speaker-_Dr__Fredrick_Jaeger: Narcotics, pain medicine, sleeping medications all may worsen the autonomic system including causing low blood pressure and affecting bowel and bladder activity and are best avoided."

Like I said, I take Ambien once in a while (maybe 3-4 times a month at most?)...and I don't see worse symptoms. I've not had to take narcotics for anything since POTS fortunately.

But what do we do? One never knows when they'll need a narcotic for something that happens. Also, bouts of insomnia make me worse...whereas an Ambien once in a while keeps things together and I sleep better.

I wasn't familiar with Roofies so I looked them up - they can treat severe insomnia and should be used short-term or on occasion. They have a lot of bad illegal use...but so do other drugs.

I just don't like a medication I use responsibly and rarely to be labeled as a bad/addict drug because others abuse it. If people here I take Ambien they are like YOU take THAT? OH! I'm like...it's a medication I use rarely...30 last me over 6 months. Definitely not abusing it!

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Like I said, I take Ambien once in a while (maybe 3-4 times a month at most?)...and I don't see worse symptoms. I've not had to take narcotics for anything since POTS fortunately.

But what do we do? One never knows when they'll need a narcotic for something that happens. Also, bouts of insomnia make me worse...whereas an Ambien once in a while keeps things together and I sleep better.

I don't tell people that I take narcotics (even though it's only 1/2 a pill a day at most) for theft reasons, but also to prevent them labelling me.

I think no sleep due to pain or other issues is worse than being labelled and will make us sicker in the long run. I don't know much about ambien, but if it helps you and you don't feel worse for taking it then I don't see a problem. You mentioned you feel a little tachier sometimes after, so maybe there's a different med that would be more effective? Either way, like you said you rarely take it.

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Cat Lady

Just used whatever YOU NEED! I was not trying to diss you on the Ambien..just saying whatever works for different people. Folks like to hype addiction issues all the time. Doctors love to push some drugs over the other and I never understood that.

Well try walkin around with no sleep. we need SOMETHING to help us sleep..not feel hungover but to get sleep.

I'm just saying some think ANY drug for sleep is horrible. I say "do your homework on ANY drug" Study risks/reward ratio

But for the record, I think newer drugs of last 10 years or so are more worriesome than something that's been around for DECADES but that's MY thoughs and my choices.

Also my doc did speeches for ZOLOFT (my old sleep doc, not Ambien) I need to go edit that..he thought Zoloft was so helpful it should be put in the water supply!? ha. He was big on Ambien as that is what was in some literature for sleep. I told him how melatonin often helped me (not a one shot deal but had to take it a few days in a row to get the effect) He said many doctors "argued" over melatonin, what dose,if it helped, what time to take it, yada yada.

The Roofies is just one arrogant doctor that told somebody Ambien is terrible.

Yet so is speed or amphetamine type drugs which are handed out like tic tacs for many with hypotension. :(

So sorry if you thought I was singling you out Cat Lady..I simply met you do what YOU need to do and the heck with what anybody else says.

Hope you get some sleep.

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Cat Lady

Just used whatever YOU NEED! I was not trying to diss you on the Ambien..just saying whatever works for different people. Folks like to hype addiction issues all the time. Doctors love to push some drugs over the other and I never understood that.

Well try walkin around with no sleep. we need SOMETHING to help us sleep..not feel hungover but to get sleep.

I'm just saying some think ANY drug for sleep is horrible. I say "do your homework on ANY drug" Study risks/reward ratio

But for the record, I think newer drugs of last 10 years or so are more worriesome than something that's been around for DECADES but that's MY thoughs and my choices.

Also my doc did speeches for ZOLOFT (my old sleep doc, not Ambien) I need to go edit that..he thought Zoloft was so helpful it should be put in the water supply!? ha. He was big on Ambien as that is what was in some literature for sleep. I told him how melatonin often helped me (not a one shot deal but had to take it a few days in a row to get the effect) He said many doctors "argued" over melatonin, what dose,if it helped, what time to take it, yada yada.

The Roofies is just one arrogant doctor that told somebody Ambien is terrible.

Yet so is speed or amphetamine type drugs which are handed out like tic tacs for many with hypotension. :P

So sorry if you thought I was singling you out Cat Lady..I simply met you do what YOU need to do and the heck with what anybody else says.

Hope you get some sleep.

:(

I didn't take your comment badly - I just meant doctors who think like this! I've had some experiences with arrogance from doctors before and it's a sore spot. LOL No worries! I'm very much not a person with an addictive personality and my most recent doctors new this. So much a relief!

I don't like taking any meds, believe me, but we have to function. And I agree. I have to decide what is worth it for me. I just won't take anything handed out. I weigh the benefits/harm.

And HA about Zoloft. That's awful. Those aren't drugs to play with at all!

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Thanks Cat Lady

I have learned ya never know how you come off in email/blogs/ or message boards in print!

ya, SSRI's are turning out to be more dangerous than very old time anti depressants..but the old fashioned style usually add to our groggieness and orthostatic intolerance. And the news SSRI's are shoved aimlessly at the public on ads! So folks really do need to be informed and as YOU know never take meds blindly "just because a doctor says so."

On the other hand, years ago I heard of Fainting folks getting so much HELP from SSRI's that I would've taken them also..like folks going from fainting daily to maybe a couple times a month, using Zoloft or Celexa. Hard to argue that.

Good luck

:(

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Maybe something like Amitriptyline or Nortriptyline could help... they happen to have some other potentially beneficial crossover (and of course potential negatives like everything). In the future, perhaps Agomelatine will pan out. One hopes that first hand accounts like the following end up being validated and reproduced for others:

http://www.dr-bob.org/babble/20090322/msgs/886827.html

My sleep was incredible. I can't even fully describe it. I hadn't even realized that my sleep was so bad until it changed. I would wake up feeling absolutely refreshed and energized. I would be very alert and awake all day and right up until bedtime.

Wishful thinking, I know... but one can "dream" Get it??? I made a sleeper of a sleep joke!!! :)

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I take restoril as a sleep aide. I feel that not getting sleep makes me feel much worse and more likely to have the tachycardia episodes. I have never needed any pain med that is a narcotic. Ambien made me sleep walk with no knowledge of doing it, so I could not take it. The Restoril is an older sleep med that for some reason is not used as much but works good for me.

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I guess SOMA (Carisoprodol) counts as narcotic though I'm not sure. I took it briefly for muscle pain and I happened to have benefit with no noticeable aggravation of POTS stuff, of course people will vary. On the other hand, Codeine & Vicodin did zero for me (just a little constipation). In the ER, I think IV morphine did do something, but not sure... was a hazy and I think they did some "dissociative" med too (amnesiac) or that's just my natural response.

I suspect I may have deficient "cytochrome P450 2D6" liver enzyme activity since that is required to activate Codeine & Vicodin... or perhaps I have something like Melissa with underresponsive receptors. SOMA doesn't require 2D6 activation like the others, which might explain why it worked for me. Or perhaps it's hitting different receptors... I can imagine either is possible.

SOMA is known as a "potentiator" of other opiates. If used cautiously to do this, it can allow lower doses of opiates to get same pain relief. This might be a trick useful for someone minimizing narcotic dosage... or maybe it's just adding another med we could mis-react to... but it's a thought. I agree with others that since pain itself is quite likely to aggravate autonomic probs... risk from it's management is generally worth it when necessary.

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This probably isn't related, but folks with MCAD are supposed to avoid narcotics too. Tylenol and fentanyl are the only "approved" pain meds. In retrospect, I get so much worse following surgeries and hospital stays- usually involving codeine or morphine. I never heard a prohibition against sleep meds for MCAD patients. Like most things, it's probably quite individual. I use a tiny dose of phenergan 1/4 of a 25mg tablet with my atarx to help me sleep. Both are anti-histamines and help me. Like Cat Lady, it's VERY important for me to have enough sleep. I get much worse if i don't.

Julie

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