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03/01/2012 01:34 AM

sleep clinic

Littlelee
 
Posts: 18
New Member

Hi all,

Some of you may remember me, others may not.

I'm a now seventeen year old girl suffering from ndph, its been worse of late

And I haven't been going to school much.

I was wondering if any of you have been to a sleep clinic?

And your experiences,

Many thanks Smile

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03/01/2012 07:53 PM
tortoisegirl
tortoisegirlPosts: 3242
Group Leader

I assume you mean seeing a sleep specialist and having a sleep study done? Yes I did...just recently actually. My pain doctor wanted to rule out that any of my fatigue was being caused by a sleep disorder caused by my pain meds. I have issues with insomnia, fatigue, and morning grogginess for the first 3-5 hours of the day. I seem to do much better with 10-12 hours of sleep a night.

Why are you considering this? If you have any suspected sleep problem its a good idea, but frankly I don't think there is any sleep problem which can cause daily continuous headpain...just morning headaches and fatigue and such. Sorry you are having increased pain. Has it only been a few days or a week, or way longer? I do get short term spikes but over the last six years I have had a fairly consistent average pain level, although mine drastically varies hour to hour.

I went to a great doctor who right off the bat wanted to address my morning grogginess and make sure I was safe driving to work (I had been nodding off). I'm on a new med for that now. Then, we scheduled a sleep study. The study itself is kinda tough because although the sleep lab was really nice (friendly tech, comfy bed, private, etc), I m really sensitive to stuff touching my body and being able to position myself exactly righto to sleep. I had the worst insomnia ever. Plus the tech had to keep adjusting the equipment. Wish I had taken the offer of a sleeping med (thought what I took usually would be enough but it wasn't).

They didn't find anything they could treat for me. They did rule out a lot of scary stuff like sleep apnea though. I had a few apneas and leg movements but not nearly enough for a diagnosis. As I expected, they found I took a long time to fall asleep, was micro sleeping in the beginning (sleeping a little than waking up), and got very little REM (deep) sleep. Unexpectedly they said I snored the whole night, mild to moderate. I thought I only snored when I was sick (it doesn't wake hubby up but we've realized I'm probably disturbing him a lot).

I'm going to follow up with an EN&T dr as I have a lot of issues with rhinitis (congestion, runny nose, sore throat) and have found my airway seems to have trouble at night (once I lay down I can't get enough air so I breathe though my mouth).

I've started sleeping propped up and have been wearing a ridiculous looking but helpful strap to keep my mouth closed. Tried Breathe Right strips but since they just work on the nose and I think my problem is deeper than that, I'm not sure if they help. Hubby says he sleep much better (ie. I'm not disturbing him) so maybe I'll feel some affect soon. Best wishes.


03/02/2012 01:12 AM
Enbee
EnbeePosts: 1556
Senior Member

I'm sorry to hear you have been having bad pain recently Sad

Kate has given some great advice on sleep studies. Aside from doing a sleep study (which is probably a good idea if your doctors think there may be an issue there) many of us have sleep issues without any actual sleep problem. If it's just the pain interfering with your sleep and not something like sleep apnoea then you might need to use some medication or some homeopathic remedies to help you sleep. Many people in this group take meds to help with sleep.

Melatonin is common and I've tried several meds with only one that has worked for me being Seroquel. There are other non med things you can do too to help you relax and sleep better.


03/02/2012 04:50 PM
Littlelee
 
Posts: 18
New Member

Thank you both so much for your input Smile

The doctors are considering a sleep clinic because I'm not getting much sleep at night,

I'm averaging 4-5 hours, and I seem to have on-restorative sleep.

The pain has been really bad for the last couple of months, also

I haven't been coping very well with it.

I do have a sleeping pill, but it only helps me fall asleep and doesn't keep me asleep.

I'm losing hope pretty fast here.

All the best,

And thanks so much.


03/02/2012 04:52 PM
Littlelee
 
Posts: 18
New Member

Thank you both so much for your input Smile

The doctors are considering a sleep clinic because I'm not getting much sleep at night,

I'm averaging 4-5 hours, and I seem to have on-restorative sleep.

The pain has been really bad for the last couple of months, also

I haven't been coping very well with it.

I do have a sleeping pill, but it only helps me fall asleep and doesn't keep me asleep.

I'm losing hope pretty fast here.

All the best,

And thanks so much.


03/02/2012 07:09 PM
Kierkegrrl
KierkegrrlPosts: 42
New Member

Littlelee: I don't have anything to add about sleep studies, beyond the great info Kate already gave you. I do know there's a lot of pressure in high school to do "everything" -- school, sports, the right activities, part-time job, etc. Is trying to do it all part of why you're not getting enough sleep? I know my mood and my pain are much better when I'm sleeping enough, so giving up whatever extras you need to give up to take care of yourself and sleep might be worth it.

03/02/2012 09:44 PM
tortoisegirl
tortoisegirlPosts: 3242
Group Leader

Thats great they are willing to give you something...what about trying one of the newer meds with different layers to keep you asleep? Also there is the general sleep hygiene stuff to ensure you are following...no caffeine after lunch, wind down routine, set hours, no lights/noise in bedroom, bed only used for sleep, etc. Is the pain waking you up, or do you just find yourself awake? The sleep study could identify if something is waking you up. They found I was getting little REM sleep in mine, but I don't know what can be done about it.

I am way more familiar with having trouble falling asleep, not staying asleep, so I'm not sure so much what direction to point you in besides to follow your doctor's suggestion on the sleep clinic and to task if there may be a different med to try (or if you can take another if you wake up after less than X hours or something). I am one of those folks with a racing mind so I have always had trouble falling asleep. I've been on a muscle relaxer for most of my headache which helps me fall asleep thankfully. I think there is a lot of hope. Have they been trying you on different treatments? It gets better, I promise. And, I have to remind myself often that it could always be worse. Best wishes.


03/02/2012 11:41 PM
Littlelee
 
Posts: 18
New Member

I don't sleep we'll because of the pain,

I just can't have hope anymore,

All the doctors I have been to no longer no what to saY.

I don't go to school often or get out of bed often because of the way I feel.

Its almost like I've lost my will to survive this.

Anyway,

Thanks all xx


03/03/2012 08:28 AM
Kierkegrrl
KierkegrrlPosts: 42
New Member

Have you considered seeing a counselor or psychiatrist? Chronic pain is hard, and can lead to depression, or exacerbate it if it was already there. I know it seems hopeless, but don't give up hope. Is your family supportive? Would they be open to you seeing someone about your mood if you brought it up?

The forum elders probably have more to say about this, but anecdotally it seems like younger people like yourself tend to get completely cured of their headaches, or have them just go away on their own, more often than older folks.


03/03/2012 08:53 AM
Littlelee
 
Posts: 18
New Member

I never used to be depressed until now,

I went to a therapist for a stage, didn't do much for me nor did it help me cope.

I can't fight this on my own, and the thing is, I don't have much support.

So it feels like I can't fight at all.

Its been 3 years for me, and no hope in sight of me getting better.

Thank you all for the support Smile

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