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        New Message Board Archives >> 2005 Cluster Headache Specific Posts >> Sleep study results
        
(Message started by: kimmeesue on Jul 6^th, 2005, 2:41am)

Title: Sleep study results
Post by kimmeesue on Jul 6^th, 2005, 2:41am

Finally saw the neuro for the results of the sleep study back in April. Looks like I have extreme sleep apnea and restless leg syndrome.
So now he has decided I don't have CH. I just have ordinary headaches set off by the lack of oxygen to my brain. Says he.
The character of my headaches hasn't changed (in terms of location, symptomology, etc.) since the first one 22 years ago but now all of the sudden, they aren't clusters.
I see a sleep specialist the 26th to get set up with a CPAP machine and he prescribed some Parkinson's drug for the leg thing and lortab for my "ordinary" headaches. Guess the lortab will come in handy next time I have a toothache or my hubby has a migraine.
I will be thrilled if the CPAP works a miracle, even a minor one.
Anybody have any thoughts on this whole thing?

Title: Re: Sleep study results
Post by marlinsfan on Jul 6^th, 2005, 10:31am

Potentially good news! I saw a thread somewhere here about sleep apnea as a cause for CH.

To me it makes sense. If O2 aborts the headache, wouldn't lack of O2 trigger it?

Keep us posted.

Title: Re: Sleep study results
Post by floridian on Jul 6^th, 2005, 10:49am

Between 40% and 80% of clusterheads have apnea - it is a trigger. I am puzzled that you no longer have clusters.

I am hopeful that cpap will help you (it helps some, not others). Apnea should be treated even if it is unrelated to clusters.

http://www.med-owl.com/clusterheadaches/tiki-index.php?page=Apnea

Title: Re: Sleep study results
Post by Kim Y. on Jul 6^th, 2005, 10:56am

Humor me if you will. If we cluster heads suffer from sleep apnea then why does it come and go? Why is it for some seasonal? Why for some of us the hits happen when we are awake?

These are just questions thrown out as food for thought.

Kim I hope that this is the answer for you and I am not saying anything bad mind you. You have bad sleep apnea and I am so glad to see that you are getting the CPAP. Is not something to take likely.

Keep us posted if this is helpful............................

PF wishes and prayers

Kim

Title: Re: Sleep study results
Post by floridian on Jul 6^th, 2005, 12:25pm

on 07/06/05 at 10:56:30, Kim Y. wrote:

Humor me if you will. If we cluster heads suffer from sleep apnea then why does it come and go? Why is it for some seasonal? Why for some of us the hits happen when we are awake?

...

Kim

Apnea is a trigger, but not The Cause. Its like alcohol - drinking can bring on extra headaches, but abstaining does not completely keep the beast away.

There are two types of apnea - one is obstructive (narrow or blocked airways), and the other is central (caused by neurotransmitters or nerve damage). I think many clusterheads have central apnea, not the more common obstructive.

Title: Re: Sleep study results
Post by Kim Y. on Jul 6^th, 2005, 1:00pm

Quote:

Posted by: floridian Posted on: Today at 11:25am
on Today at 9:56am, Kim Y. wrote:Humor me if you will. If we cluster heads suffer from sleep apnea then why does it come and go? Why is it for some seasonal? Why for some of us the hits happen when we are awake?

...

Kim

Apnea is a trigger, but not The Cause. Its like alcohol - drinking can bring on extra headaches, but abstaining does not completely keep the beast away.

There are two types of apnea - one is obstructive (narrow or blocked airways), and the other is central (caused by neurotransmitters or nerve damage). I think many clusterheads have central apnea, not the more common obstructive

Thanks Floridian, I was just curious. Didn't realize there was two different types of apnea the only one I ever delt with was obstructive. So thanks again for humoring me....Kim

Title: Re: Sleep study results
Post by E-Double on Jul 6^th, 2005, 1:05pm

I have both ;)

Couldn't tolerate wearing the device though.

Title: Re: Sleep study results
Post by kimmeesue on Jul 6^th, 2005, 3:13pm

on 07/06/05 at 10:49:36, floridian wrote:

. I am puzzled that you no longer have clusters.

"I" didn't say I don't have clusters. Believe me, I know I do. I just don't think my neuro is experienced enough with them. Doesn't much matter, nothing helps anyway. I have heard good things about the sleep specialist so maybe he wil do me more good than the neuro. Problem with living where I do...not a large choice of specialists.
Will keep you posted.
Kim

Title: Re: Sleep study results
Post by Sandy_C on Jul 6^th, 2005, 4:50pm

It figures! My husband has sleep apnea but I'M the one getting the clusters! Something's wrong with this picture. [smiley=huh.gif]

Title: Maybe some help...
Post by Jeff_in_OH on Jul 6^th, 2005, 9:29pm

I have Obstructive Sleep Apnea. Was diagnosed in 2002 and was "issued" a CPAP. I too was not able to fall asleep with it on (thank you Mr. Anxiety), and if I did manage it woke me up all night. So for about a year I might have racked up 200-300 hours on the machine. Most of those hours were wearing the mask and staring at the ceiling.

After realizing that I really needed to use it to increase my quality of life, I told my PCP and he gave me Ambien, works like a charm. The CPAP now has almost 4500 hours on it and I can sleep through the night with it on. It is definately worth learning how to use it, although I still need the Ambien to sleep through the night.

I asked my PCP yestarday about using O₂ injection with it on a regular basis as a preventative but need to go back to the Neuro for approval. Not really sure it would help either, so using the O₂ strictly as an abortive (just got it today).

Thinking back I probably had OSA when my clusters started in 1994, but never had it checked out. My overall cluster pattern has not seemed to change since starting to use the CPAP, but this cluster is different in many ways than my last 4 with multiple attacks per day and the intensity. Seems that this cluster is lasting longer too than before.

For those who have this or think they may have it, get checked out!

Jeff in OH

Title: Re: Sleep study results
Post by mcf69 on Jul 6^th, 2005, 11:56pm

Quote:

I will be thrilled if the CPAP works a miracle, even a minor one.
Anybody have any thoughts on this whole thing?

I can't speak from experience of the effect of CPAP on CH's, since I haven't had a cycle since being on the CPAP, but I can tell you that the relief it provides in the sleep department is truly miraculous. I used to have all the classic signs of apnea before, now I don't, I'm awake and alert all day and feel 200% better. As for not having clusters, I can say that I always had "regular" headaches before going on the machine, now I haven't woke up with a headache since starting it. Don't let all the naysayers get you down about the machine and using it, everyone adapts to it diferent and some have better results than others. A big part of getting used to CPAP and being comfortable is the way the equipment is set up and how responsive your theraspist/homecare provider is to your needs and concerns. A few tips I can give you before you go are:
1. Get the best setup that insurance/finances will allow. Don't go with a cheap setup just because it is more economical.
2. Make absolutely sure that you get a heated humidifier with the machine, the comfort it provides in keeping your sinuses moist is golden, without it CPAP can be almost unbearable.
3. Get the most comfortable mask possible, there are several on the market, I won't make mention of brands here for fear that I'm making a sales pitch, PM me and I'll give you some links to check out for masks.
4. Ask questions!!!!!! Don't be afraid to ask for help with getting setup, that's what the people selling this stuff are there for.
Like I said, even if it does'nt do much for the clusters the quality of life improvements it gives are fantastic. If you have any questions, give me a shout. Best of luck....

Title: Re: Sleep study results
Post by millie the episodic on Jul 7^th, 2005, 9:27am

:( If sleep apnea could be the problem and by addressing that problem could solve your CH / ordinary H/A then I say go for it and be prayerful that it solves the whole problem. But my thang is you can hardly sleep anyway when you are in a cycle. I would like to know if this study was done because of CH's.

Title: Re: Sleep study results
Post by floridian on Jul 7^th, 2005, 9:48am

on 07/06/05 at 15:13:00, kimmeesue wrote:

I should have said: "I am puzzled that your doctor now thinks it is not clusters." sorry - was being a bit oblique and should have used a smiley.

Title: Re: Sleep study results
Post by kimmeesue on Jul 7^th, 2005, 4:29pm

on 07/07/05 at 09:27:00, millie the episodic wrote:

:( I would like to know if this study was done because of CH's.

yes, it was done because of the headaches...there seems to be a link and I have a long history of both CH and sleep problems.
I switched to this neuro because of a newspaper article about Botox. Ended up my insurance wouldn't approve and he really isn't up on CH. My previous neuro kept making promises she couldn't keep and was a little arrogant...seemed it was more about her than me. So, here I am. Will try anything.