Appointment with sleep Dr....Rant!

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Hi Guys:

 

I've been really upset since this past Tuesday...I waited for over a year and a half to see a sleep Dr at a hospital sleep clinic in Toronto, it brags about all the high tech therapies that it offers for sleep issues so I thought the wait would be worth it given I'd had a bad experience with another sleep Dr.  The first sleep Dr was a psychiatrist so i wasn't surprised that he turned out to be an idiot defending benzos etc.  Anyway, this Dr on Tuesday was a neurologist........long story short he was clueless re benzos and didn't even understand that Klonopin and Valium are in the same family. He kept saying that I have been off Klonopin for 41/2 years so it can't be the benzos causing sleep issues, and he couldn't understand that I was reinstated on valium and I'm just finishing that taper now.  I asked him about nuero feed back techniques etc but all he seemed focused on was doing a sleep study ( I took my prior one and he didn't even want to look at it ) and then RX'ing gabapentin or Lyrica as he swears by these meds for sleep issues!  I told him my goal is to be med free to which he told me that if I've had such severe insomnia for such a long time that I'm not likely to be med free at my age  :'( 

 

It was barely 10-15 minutes and he wasn't listening to my concerns.  The only thing he did say was that the C/T left my brain in this non sleep state but that 41/2 years now!

 

I've barely slept this week even with sleep aids and I'm terrified.  I can't seem to dig myself out of this hole and so deprived of sleep for 41/2 years now..and I'm still tapering.  I'm scared I won't make it... :'(

 

Blue

[[Su...]]

so sorry to hear that as that clinic does have such a good reputation!  and I'm so sorry that you felt so invalidated by that doc....

The sleep clinic in Vancouver really only offers CBT -- which can be helpful up to a point....

SS

There was just another post about someone seeing a sleep doc who recommended some CBT type stuff and Melatonin to help the CNS from being so revved up.. Sorry I lost the link but you may find it under new posts?  He went to a sleep doc too....

 

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Suffering ...I do use melatonin but seems nothing much helps me anymore . It scares me as the lack of sleep revs up all the other sxs so badly, I've been sick to my stomach all morning , horrible migraine and I'm dizzy when I walk. I think I could deal with the sleep issue but when all the other sxs flare up badly its just too much.

 

Thank you for your suggestions .

[[Su...]]

That sounds really hard Blue,

I'm sorry that things are so rough for you right now.  I have suffered from chronic insomnia in the past and remember how debilitating it is.....

Not sure how old you are but you can guess mine from my handle...

 

I truly believe that if we keep at it, taper slowly enough and support each other we can get through this......

I'll be singing you lullaby's.. and you'll be glad you can't hear them!    (hope a little humour is OK -- sometimes when I was in the thick of insomnia it might not have been.....)

Not in any way making light of your dilemma..

SS

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Oh and it's Thomas66 who got his results and offers some suggestions from his doc....

"I got my sleep study results"

ss

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Suffering ...thank you for your support and help , I greatly appreciate it. I see the post that you are referring to.  I can't believe I'm still standing having dealt with this severe sleep deprivation for 41/2 years...☹️ 

 

I looked up the ratings for that neurologist and they are not very good, seems people only get 10 minutes and he doesn't want to listen to your issues and then writes to your dr that it's all psychological . He kept asking me do I drive and just as a precaution I said no, I'm glad I did as he had threatened some patients that if they didn't follow his suggestions he would have their licence taken away .  I didn't have much faith in sleep Drs to begin with but now I have even less.

 

How did you deal with your chronic insomnia ?

[[Su...]]

Hi Blue,

Well dealing with my chronic insomnia is what got me on benzos, so not such a good example.

 

  It really started with being in a too stressful job coupled with menopause.  I've had many friends who said they didn't sleep for five years during menopause.  Many who weren't using benzos started using progesterone cream or supplement BUT progesterone is cross tolerant with benozs  ( didn't know THAT until BB) and it made my insomnia much worse.  I did use a dab of estrodial HRT which helped a lot.    Oh I realized I haven't looked at your sig and I'm assuming you're female......

 

But along with the benzos which weren't working after awhile, I used pretty strict sleep hygiene.

There are lot of articles on sleep hygiene online or I would be happy to write to you about what I've learned.

Don't want to overwhelm with info in one post.

 

atm the Remeron low  dose has saved me.  5mg or 7.5mg depending on the day....

And I still use really strict sleep hygiene

 

And the only thing that helped with calming my CNS, and helps a lot, is osteopathy..... Very common and well respected in the UK, not known that much in Canada but works directly with the CNS....  Have tried naturopathy, homeopathy, acupuncture, massage (some help there).... but osteopathy provides me with real relief.

 

Sure am willing to keep this conversation going.....

SS

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SufferingSixty....Again, thank you for all that info. Interesting re menopause, I had a horrible peri menopause and was put on bio dentical hormones but the original Dr put me on a high dose of progesterone cream.  I developed gastroparesis once I was reinstated so I began trying to eliminate any meds that would aggravate it, I was shocked to realize that progesterone can also cause gastroparesis ( rare but it does happen ) so I began tapering down on the progesterone and it was just like tapering a benzo    I also tapered off the doxepin as that class of meds can cause the GI issues too..so last year was absolutely horrible and I barely tapered any valium.  I'm still on a very low dose of progesterone and I'll just leave that until I'm off the valium and remeron.

 

I've been using a low dose remeron for quite a while now but it really only helped sleep when in combo with the doxepin.  However when I tried to just drop it the anxiety was horrible so I've just stayed on it for now as my W/D's are already horrific.

 

I used to have a great osteopath but he returned to his home country, England and I haven't found a decent one since.  I've tried all the other modalities that you have and really never found much relief at all but just an empty bank account. I also found that osteopaths trained in Canada really fall short on good training but I was spoilt for years with a British trained osteopath so it's hard filling his shoes.

 

I think I will have to re visit sleep hygiene again . I think my original attempts were much too restrictive and I ended up with even less sleep. I think in W/d we have to be a bit more flexible rather than stringent sleep restriction principles.

 

Hope all is well with you.

 

Blue

[[Su...]]

Hi Blue,

Interesting about your progesterone w/d.  As progesterone does bind with GABA sites it wold be exactly like benzo w/d.  yuck...  I went to a specialist who heard about my issues with progesterone, said that that was impossible, and wanted to put in a progesterone IUD!  Obviously I didn't return, as I had not felt heard or understood at all.  and I now know that would have put me into cold turkey .... or a different kind of hell.

 

And horrible what the progesterone did with your gastroparesis.... I wonder if in some ways it's not all benzo related as there are so many gaba receptors in the gut.... but I'm simply speculating here, I have no knowledge about it.  I hope that has cleared for you and you are feeling better.

 

I agree -- any osteopaths that are trained in Europe or the UK have a different training than Canadian schools.  South African trained are good as well I have found.  Too bad you can't replace the help you were getting.. It sounds like you live in Ontario or thereabouts.  I live in BC and we do seem to have a few European trained osteos around.  The best one is booked for a year!  But i look for cancellations...

 

Ya I don't use the sleep restriction part of sleep hygiene at the moment either but some of the other ideas have been helpful for me.  One that is hard to implement at times is the idea of not lying down for long during the day.  I worked with a sleep doc who said that the body can register lying down as sleep time and it can interfere with sleeping at night.  I went for too long a walk yesterday, lay down for too long in the afternoon as a result and last night i woke -- wide awake  -- @ 2:00 am, so I took a sliver of Remereon and was able to sleep until 7:30.  Very glad for that..

 

I am on day 7 of a hold that I started so that I could go to see my Mom.  In the past when I even held for 2-3 days I would feel so much better!  This time I'm feeling worse as the days go on.  I'm not saying the hold is doing that, I think it's sxs from cutting catching up with me.  But it's another one of those unpredictable things about benzo w/d.....

 

Hoping that your day goes well.

SS

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Hi Guys....just wondering if anyone else has had a horrible visit with a sleep Dr? I had high hopes for this visit but the Dr was a complete jerk and oblivious to benzos....in fact he told me that even if you C/T a benzo it won't cause sleep deprivation!  I've been depressed and really down in the dumps when this guy told me that at my age and the length of time that I've suffered brutal sleep deprivation that it's highly unlikely that I will ever be med free now  :'(  Talk about depressing... :'(

[[Su...]]

Hi Blue Swan,

I worked with sleep docs in my profession.  I can't say they were known for their compassion.  Some that I worked with even boasted that they had not every had insomnia!  (so how does that create empathy?!?)

I think many of the docs I worked with were bewildered by people who came in not sleeping as they couldn't comprehend not being able to sleep...

"You just put your head on a pillow....."  so said things out of ignorance  and lack of sensitivity.  Book learning just doesn't cut it for dealing with suffering humans.

 

I know I didn't think I'd ever be without sleep meds, benzos, but with the help of some micro dose tricyclics things are good during the taper.  So after the taper I fully expect to be able to sleep......  (I'm 60 and several decades on benzos....)

There is always hope and the body is always wanting to heal and can.. I know this to be true from other conditions so there's no reason to think any different for all of us..

Please don't let professionals get you down -- humans helping humans has worked forever.  And this peer led group is one example....  That doc simply didn't know what the ---- he was talking about....

:smitten:

SS

 

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SS...thank you for the feed back, I was horrified at this Drs nonchalant attitude and he scared me more than I already was.  I am worried bcos this all started with a c/t off klonopin , a list of Meds during the year of the c-t, the reinstatement on a lower dose of Valium to do a slow taper. I've have tapered incredible slow but the sleep deprivation had followed me the entire time so it does cause me a lot of concern that something is badly wrong. I've tried low dose AD bit they rarely touch my sleep deprivation, same with herbal supps, MJ etc etc . I know is frowned on to think one might have fatal insomnia but I sure do right about now 😰 

 

I'm trying to be optimistic but it's sure hard, I think I'd be coping better if the sleep deprivation wasn't accompanied by severe GI distress , daily migraines and headaches , tachycardia etc.

 

I think the visit to that sleep dr left me feeling very defeated and down. I'm trying to pick myself up as I know I need to keep moving forward.

 

Thank you for your support...I really needed it today!..💜