Sleep Center referral by PCP....

Hey All....just got a call back from nurse at PCP Office....she wants me to go to a Sleep Center for evaluation....my insomnia is worse and I pulled an all nighter last night.....this is a new PCP for me and has no knowledge about Benzos or Fibromyalgia.......any thoughts??

 

Thx....BB.

It may help, but usually they test for sleep apnea, etc.  If your sleep is due to benzo w/d, there's not much they can do.  I wanted a sleep study done, but since I wasn't sleeping at all (due to benzo w/d), they didn't recommend that I come in.

 

Perhaps some others can weigh in here as well.

 

Sincerely,

 

fg

I would confirm with the sleep study people that they'd be able to help with anything if you are unable to sleep.  I was supposed to have a sleep study done once to test for apnea but I ended up not going because at the time I didn't think I'd be able to sleep normally in such a weird place.

 

I'm kind of curious to find out what they think they might find out by doing this?  I honestly don't know what they can test for apart from apnea.  And like I said, if it's lack of sleep, is it still beneficial.

 

I've also heard that some sleep tests can be done with a remote device you bring home.  It may not be as accurate and I'm not sure they can use that test for whatever they want to test you for.  But it might be worth asking about.

I have a family member who suffers from insomnia. He went to a sleep clinic as recommended by his doctor and didn't sleep a wink while there. The techs said they got nothing to go on because he hadn't slept. 

Thanks to all who have commented so far....my gut is telling me that this will be an unsuccessful visit and tons of $$ I don't have to spare......

 

Interested to here what others have to say....when I call how should I approach it....what questions should I ask.....etc.?

 

BB.

I think you should start with what you've read here, Betty. You might tell them that you know several people who have been insomniacs and have done a sleep study only to not sleep during the study....and therefore no data was collected. You might want to ask them if a sleep study would do you any good given your own insomnia.

 

Whether or not you bring benzos into the conversation will depend on how you feel about it at the time. Should you decide to do so, you might say that you feel your insomnia is due to use of benzos and now with the withdrawal associated with them.

Thanks Hope...i called and got a recording as it must be after hours now....left my name and a short questions.....Does your facility treat individuals with benzo w/d and fibro induced insomnia....we shall see what kind of call back i get....will keep you posted.

 

BB.

I just had a sleep study in May and after a physical exam by the doctor I didn't qualify for the study because I had no obstruction of any kind so that ruled out any type of apnea. I was told I have conditioned primary insomnia. I've been doing both non-pharmacological and pharmacological approach right now with the hopes of getting my sleep patterns back to normal.

betty, I went to a sleep center at a local hospital and the neurologist told me they don't really test for insomnia. Most insomniacs can't sleep in their own beds, let alone at a sleep center hooked up to wires. I knew I wouldn't sleep. They don't really have anything to offer insomniacs except pills....either sleeping or anxiety or depression. I didn't want that.

They did briefly talk about sleep restriction. Didn't really give me a lot of help with it but I left after 2 or 3 visits. I really don't think sleep centers do much with insomnia patients. They focus on sleep apnea, unfortunately for us.

I have heard some people have some success with sleep psychologists. I found one in my area, and may have to see her. I know she doesn't take insurance and will probably do sleep restriction, which I really know how to do on my own.

Sorry this isn't better news but the doctors are really not much help....they just don't have anything to help us. Wish there were more studies done on insomnia, but for now I think we are out of luck.

Dear Betty,

 

I also had a sleep study for insomnia when I tapering from .5 mg of klonopin. They pretty much just look for sleep apnea, reduction of O2 sats, and restless leg syndrome. I actually had 2 studies, the first one was inconclusive bc I didnt fall asleep at all. Fortunately, My insurance covered both, as that would be terrible to pay  a lot of money and not get any results!

 

My results revealed mild sleep hyponea (mild airway closing when I slept on my back). It tried a c-pap but that made trying to fall asleep worse, especially considering our nervous system sensitivity after benzos. It felt like a tornado in my nose and throat:)

 

The other options for insomnia that sleep specialists give  are meds, which we all know about.

 

I had some success with antihistimines esp atarax and pomethazine but not enough, I went on Ambien a couple weeks ago voluntarily after my sleep deprivation got so bad that I started with the suicide thoughts again:(

 

I agree with the others that it may just be a waste of money... unless you suspect apnea.... and you may  just walk out of there with a really expensive diagnosis of what you aleady know...insomnia! ugh, so frustrating.

 

 

Hi Jennbell, MM and Shekinah.....I so appreciate all your honest words and support.  I do not bleive that I have sleep apnea, rls or any of the others....i truly believe that part of it is related to the Fibro which is still not completely understood or treated properly and obviously a result of the benzos I have taken for apprx 9 years.....i am interested in the sleep restriction though.....any suggested reading or websites i should check out?

 

BB.

Dear BB,

 

Your experience is so close to mine that I had to respond. I have fibromyalgia and the worst symptom and most life changing one has been the insomnia. I have been on Lorazepam 1 mg and 10 to 20 mg Sonata every night for 10 years. Although it works most of the time, I want to try a new medicine prescribed by a fibro specialist and get off of the lorazepam safely.

 

I have never had a sleep study for the same reasons many have mentioned here; I would probably be awake and/or the sleep center would not be comprehensive enough. I believe I have alpha wave intrusion disorder like many people with FM.

 

I thought maybe you would appreciate the info in the following links regarding FM and sleep problems as I did. Very informative and helpful (and hopeful) stuff.  If I could have a sleep study at the centers these doctors use I feel it it would be accurate.

 

A presentation by Dr Andrew Holman, FM researcher and doctor:

 

 

A 4 part presentation by Dr Victor Rosenfeld, neurologist and FM sleep researcher:

 

Hi Daylily.....Thanks so much for connecting with me....I would have to say that the insomnia and cognitive probs are worse than the pain for me...i have a high tolerance for pain.

 

Daylily....i do have one question for you...are you able to work?  Even part time?

 

I am soooo frustrated cuz I had a PT job for 20 years but was laid off....now my health is worse and I cant work....dont know what to do.

 

What is the new medication?  Is it Savella?

 

BB.

BB,

 

I have not been able to work since the insomnia began 14 years ago. I would love to do something at least part time.

The medicine is Losartan. It is usually used as a blood pressure medicine but it is working in some FM patients through its effect of suppressing the central nervous system when used at bedtime.

 

May I ask you a question? Why do you think you developed a tolerance for klonopin in 2008?

Hey Daylily.....well with respect to tolerance....I began experiencing very bizarre sx....gradually....as time went on I realized that it was either a CNS issue or Autoimmune.....I had ruled out allergies and environmental exposures.

 

Also learned that a family member was exp similar sx and they are on Klonopin, as well.

 

After seeing numerous docs....I had to ask myself what is the one commonality....it was the damn Klonopin!!

 

Googled my sx along with klonopin and presto....all my sx came up and so did benzobuddies!!

 

Why do you ask??

 

BB.

Hi Daylily.....watched one pf the videos and I think that Dr. Hollman has got it correct....I truly believe that FMS is more Neurological than anything the researchers surmise....dont you?

 

How does one find these great sleep centers?

 

BB.

BB,

 

I asked because it is so hard for me to differentiate the symptoms of FM from other problems. I never noticed any symptoms of tolerance to Lorazepam over the years, I just know I felt bad and the insomnia was real bad when I recently tried a half dose.

 

Also, in your comments about the one video, it is definitely becoming more widely accepted that FM is a disease of the central nervous system.

 

The sleep centers in the videos are in Seattle WA and Savannah GA. Of course there are probably good ones around, but the one Dr. Rosenfeld uses is the best I gave seen for FM sleep disorders. I though it was interesting in Dr. Holman's video how many FM patients have sleep apnea that no one would have suspected would have it.

 

If you do a search of sleep centers that study alpha wave intrusion you will come up with more places. Hope you find a good place.

 

Hope you are sleeping better, too!

Hi Daylily.....I could tell the difference easily.....I have been living with Fibro since 1982.....all the new sx were not close to what I normally feel with the Fibro and lack of sleep.

 

When were you dx with Fibro?  Were you on any meds when you were dx?  I was not.....plus I was quite young, too.

 

If you were on meds....long term....they could very well be the cause of you sx and not Fibro.

 

Unfortunately, Fibro and Chronic Fatigue have become the catch-all diagnosis when docs don't have a clue and the patient just wants an answer quickly.

 

I have had good nights and bad this week so far.....been taking Benedryl D for bad seasonal allergies but cant take it for too long.  We'll see.....

 

Hang in there.....and thanks again for the great info on Fibro!!

 

BB.