Clusterheadaches.com Message Board


    
      
        Clusterheadaches.com Message Board
        (http://www.clusterheadaches.com/cgi-bin/yabb/YaBB.cgi)
      

        Cluster Headache Help and Support >> Medications, Treatments, Therapies >> sleep study with CH/active cycle/ Topomax ???
        
(Message started by: beachmusic on Apr 17^th, 2008, 10:04am)

Title: sleep study with CH/active cycle/ Topomax ???
Post by beachmusic on Apr 17^th, 2008, 10:04am

I need some advice please. My doctor (the one that will not return phone calls yada, yada, yada) wants me to have a sleep study done that also requires staying the entire next day for 5 naps, yeah right!!! I do NOT nap, and we all know why!
Well anyway I have been on Topamax now for quite awhile and I consider myself still in an active cycle. I feel that the test results would be false-not a true reflection of real time. The circadian rhythm with CH people is all out of whack anyway--especially when in cycle. I cannot imagine what this doctor is trying to prove or why I should put myself through this right now.
Any thoughts on this would be greatly appreciated. Thanks everyone! Mary Ann :)

Title: Re: sleep study with CH/active cycle/ Topomax ???
Post by brewcrew on Apr 17^th, 2008, 10:49am

Tell him you think it's a good idea (validate him), but you would like to wait until you're no longer in cycle because of the disruptions CH causes in your sleep patterns. End of discussion.

Title: Re: sleep study with CH/active cycle/ Topomax ???
Post by MinxKittten on Apr 17^th, 2008, 12:14pm

some of the newer CH medical thoughts are that CH are related to circadian rhytms and disruption of the sleep wake cycle, noted by sleep onset HA's

you should be honored and willing to be a part of this study. any information and help gathered that will help you and your fellow sufferers.

i went to Stanford, and worked and did reasearch in the sleep disorders clinic for 2 years.

sleep studies are not painful in any way to you.

the electrodes attached to your head may be a little uncomfortable, but not painful. that in itself, sometimes affects the "naturalness" of the sleep cycle, but subjects get used to them after a bit.

wouldn't you rather have a little discomfort instead of a ALOT of headache pain?????

go for it! for you and your friends, it cant be any worse than what you're going through now.

to wait till you're out of cycle would be pointless, cuz then you're just like the average person and they can't see the differences.

trust me on this, you'll be OK

jacq

Title: Re: sleep study with CH/active cycle/ Topomax ???
Post by brewcrew on Apr 17^th, 2008, 12:31pm

I don't think that was the point Mary Ann was trying to make. What would be the point of doing a sleep study (I assume they're looking for sleep apnea) while in cycle if you're either waking up every 90 minutes due to being hit, or being doped up so as to have a radically altered sleep cycle anyhow? Certainly not the mild discomfort of a few electrodes attached to one's head.

Correct me if I'm wrong, Mary Ann. I don't want to pretend to speak for you.

Title: Re: sleep study with CH/active cycle/ Topomax ???
Post by MinxKittten on Apr 17^th, 2008, 1:08pm

on 04/17/08 at 12:31:42, brewcrew wrote:

no they would not be looking for sleep apnea, that is a breathing disorder in sleep cycles. and only relevent if you're on heavy duty sleep medication, because you could die if you're on heavy sleep medication and have sleep apnea. if you have sleep apnea, your body has to "wake up" to breathe and if you're overly medicated you don't wake up. hence the cpap machine for sleep apnea sufferers.

what they would be looking for, is changes in brain activity at the onset of the sleep cycle that would be different then a normal persons brain activity at the onset the sleep cycle.

the onset of sleep is a common time for CH's. studying this is VERY IMPORTANT to find the cause and hopefully cure.

its very important to see what's happening in the brain when you're waking up every 90 minutes with a hit.
which electrodes are firing, which part of the brain, what's happening with neurotransmitters and serotonin uptake at the onset of a CH????

so much can be learned from this type of study and there are not enough of them out there to help CH sufferers.

now if this is sponsored by the topomax people, they may just be looking at the brain activity differences at sleep onset between headaches sufferers on their meds and those who aren't.

even still though, that will help to find out how topomax works on CH's, and how to maybe make it better.

Title: Re: sleep study with CH/active cycle/ Topomax ???
Post by beachmusic on Apr 17^th, 2008, 1:21pm

Thank you Brewcrew!

I think you pretty much took the words right out of my mouth.

I am certainly not concerned about any discomfort as I have had a sleep study done before when out of cycle I just do not see the point when I am so completly overmedicated. Add to that I do not nap at all during the day!!! Why pay thousands of dollars for a test while I sit there wide awake for a test that will only need repeating????

As for the evening study, I feel that I am so doped up, overmedicated that a sleep study at this point would be ridiculous. Add to that, my doctor will not take my phone calls to discuss the possiblity of rescheduling. As a matter of fact I was told if I did not go through with the test he would more than likely not treat me. As if he is treating me now.....

I have an appt. with a new neurologist in 4 weeks and would just like to wait and see get 2nd opinion.
Hopefully I am more clear with my question this time.

Thanks all!

Title: Re: sleep study with CH/active cycle/ Topomax ???
Post by beachmusic on Apr 17^th, 2008, 1:30pm

Minx maybe this is important. I have not had a nighttime hit that woke me in over 6 weeks. Is that relevant?

Title: Re: sleep study with CH/active cycle/ Topomax ???
Post by brewcrew on Apr 17^th, 2008, 1:35pm

Mary Ann - You need to find a new doctor. What a buttmunch.

Jacq - I assumed that the sleep study was being used to diagnose sleep apnea. You are assuming that her doc is looking for something else. Mary Ann never told us one way or the other in her initial post.

Title: Re: sleep study with CH/active cycle/ Topomax ???
Post by MinxKittten on Apr 17^th, 2008, 1:44pm

on 04/17/08 at 13:30:06, beachmusic wrote:

Minx maybe this is important. I have not had a nighttime hit that woke me in over 6 weeks. Is that relevant?

if you had sleep onset HA's Before and are not having them now, it would be great to see the difference in your brain activity now, but only if you were studied when you were having sleep onset HA's.

if you were not studied at the time you used to have sleep onset HA's there would be nothing to compare with now.

You should NEVER be PAYING for a sleep study, unless you REQUEST IT. if they are asking you to do, they sould be paying, the doctor, the drug company, the researcher.

more importantly, sounds like you're not comfortable with your doctor. good ones are near impossible to come by. keep looking.

don't do anything you don't want to do.

i just know my hubby is always saying, "i would throw myself down a flight of stairs, if it would help."

i am always looking for studies that are related to CH's in hopes that somewhere out there, there is a cause and a cure. so sorry if i jumped on it, trying to make you do it.

there aren't enough studies being done.

i'll keep looking and this will motivate me to start writing more letters to universities and hospitals, looking for good studies.

Title: Re: sleep study with CH/active cycle/ Topomax ???
Post by Giovanni on Apr 17^th, 2008, 4:03pm

On a personal basis, I agree with brewcrew. Why in the world do a study NOW in the midst of a cycle??? And in addition, on high levels of medication that would not be present in remission.

Most CH people have messed up sleep, especially during active cycle. Would the study be there to confirm that point?

Best of luck Mary Ann on whatever you decide,
PF

John ;)

Title: Re: sleep study with CH/active cycle/ Topomax ???
Post by beachmusic on Apr 17^th, 2008, 4:15pm

I guess I don't give enough info or make myself very clear and for that I am sorry.

1) Been trying my hardest to get in with a new doctor since this cycle began because yes he is without a doubt the biggest *$*&%*%$@* out there!!!

2) I have no clue exactly what he is looking for because he doesn't deem that my business when I ask him, nor did he even tell me he was ordering more than the usual sleep study.

3) My first c/h cycle when I had a sleep study done I had never experienced night time hits.

4) This cycle which began in January 07 began with numerous nightime hits but they have ended now and the whole cycle is winding down. No nightime hits in over 5 weeks.

5) I most certainly am not paying for the sleep study my insurance company is and I did not request it! But when an insurance company pays for a test we all pay! So I do not want and unnessesary test.

6) And in case everyone out there doesn't know it many doctors today are invested in these sleep study businesses. I happen to know for a fact that my doctor , and his entire practice is invested an profitting off of every test he orders. Along with most every cardiologist and pulmonary specialist in my area. I do not know what is up with that....Guess that is not my concern at the moment.

Anyway just looking for some advice......

Title: Re: sleep study with CH/active cycle/ Topomax ???
Post by Giovanni on Apr 17^th, 2008, 4:39pm

beachmusic wrote:
And in case everyone out there doesn't know it many doctors today are invested in these sleep study businesses. I happen to know for a fact that my doctor , and his entire practice is invested an profitting off of every test he orders

I think that you've answered your own question! Is this the same doc that said you had migraines because one of the attacks was three hours and therefore could not be CH?

John ::)

Title: Re: sleep study with CH/active cycle/ Topomax ???
Post by beachmusic on Apr 17^th, 2008, 5:53pm

You got it John. Your a very good listener ya know ;)