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(Message started by: cerebus1968 on Nov 6th, 2002, 8:19am)

Title: Anyone read this????
Post by cerebus1968 on Nov 6th, 2002, 8:19am
http://my.webmd.com/encyclopedia/article/1826.51188

Has anyone read this??  Does anyone have sleep apnea??  Do the breathing machines help??

just wonderin..
Tina

Title: Re: Anyone read this????
Post by Bob P on Nov 6th, 2002, 8:29am
I spoke with the Doctor who did the apnea study.  He stated that his findings do not show that apnea causes CH.  He would only say that apnea "may" be part of a triggering event in nightime attacks.

Title: Re: Anyone read this????
Post by pjbgravely on Nov 6th, 2002, 8:27pm
Tina, I have had CH for a long time but didn't know it becouse the pain was at most a 7. But not this cycle, my first 10 sent me to the ER and diagnosed as CH after many tests. This happened 5 months after I started being treated with a CPAP for sleep apnea which I stopped breathing 20 times an hour. Sleep apnea's main symptoms are fatigue, not waking up in morning, being able to sleep at any time, any where and joint and bone pain. The CPAP helped me in thoes areas but it didn't do anything for my clusters. If anyone you know might have sleep apnea have them get a sleep study. It can kill you. Unfortunatly it doesn't trigger clusters in me.    PJB

Title: Re: Anyone read this????
Post by Charlie on Nov 6th, 2002, 9:00pm
CH studies are frustrating. Apnea and CH? Hard to put together.  Not much evidence here and we have to be careful. We want these things to be definitive so badly.  

Charlie

Title: Re: Anyone read this????
Post by Ueli on Nov 6th, 2002, 10:54pm
A fraction of the population has sleep apnea (I have no idea how many) and ~0.1% have clusters. Therefore, at least 0.1% of apnea sufferers have clusters too (assuming one disease does not exclude the other). If someone suffers from both then it is likely the apnea triggers nightly cluster attacks (but if this is not the case few would call that unfortunatly like pjbgravely ;D). But I don't think that one disease favors the other, e.g. clusters are not more prevalent among apnea sufferers than in the general population.

Some more than a few words about the webmd.com article Tina linked to:

It is obvious the authors are medically trained (you can see that from the many overcautious, non-committing statements, LOL). But probably they got their information of CH only from books and journals and have never met a clusterhead in flesh and blood.

Some points that are IMHO flaws in an otherwise good article:

Cause:
Some doctors believe that changes in how long daylight lasts as the seasons change may trigger cluster headaches. Episodes seem to occur more often when the days are getting a lot longer or a lot shorter, with peaks occurring 2 weeks after the longest and shortest days of the year (July and January)
I thought these days were in June and December ::), but more seriously, around these days the rate of daylight change is at he least. Furthermore, regular cluster bouts are more common once per year than twice.

Nervous system problems, especially in the feeling and movement to some of the muscles in the face (trigeminal nerve). Cluster headache pain occurs in the same area as that supplied by the trigeminal nerve.
I've never heard that a CH attack is triggered by "feeling and movement of some of the muscles in the face". That applies to trigeminal Neuralgia, not CH.

Associated symptoms:
Nausea, vomiting, and (rarely) diarrhea.
The "rarely" attribute does apply to the first two too.

Sensitivity to light (photophobia) or sound (phonophobia).
These are rare too and apply more to meegraine (like the nausea).

What Happens:
If cluster headaches begin to happen more often over time and begin to respond less well to medications taken to prevent them, they are called chronic cluster headaches.
This is a real gem! :o  An entirely new definition of "chronic"!  ???

When to Call a Doctor / Who to See:
Most primary care doctors and family doctors are familiar with the symptoms and treatment of benign headaches, such as cluster, migraine, and tension-type headaches.
How true! Most of us can confirm this. Hence the average of only 6.6 years to diagnosis. ???

Prevention:
If you smoke, stop. Cigarette smoke may trigger cluster headaches.
From near to 200,000 posts on this MB, it is clear that only very, very few are triggered by cigarette smoke. But of course it is always good to condemn the filthy habit of smoking.

Try to maintain a regular sleep schedule. Changes in your normal sleep patterns (especially taking afternoon naps) seem to trigger cluster headaches.
This can only come from someone who never met a clusterhead >:(

Try to reduce your overall stress level. .... Reducing stress may help avoid them.
Hey, we are not talking about tension headaches!

Home Treatment:
High-flow oxygen inhaled through a loose face mask can help relieve headache pain. Inhaling oxygen relieves pain almost immediately (within 10 to 15 minutes) in many people who have cluster headaches.
The mask should not only be 'loose' but have also have lots of additional holes, or not?
Only someone without first hand experience of cluster pain can use "almost immediately" and "within 10 to 15 minutes" as synonyms.

Medications
Medications that prevent cluster headaches can be used alone or in combination, and include:
  • Methysergide (Sansert).
  • Corticosteroids (Prednisone).
  • Antiseizure medications, such as Depakote.
  • Calcium channel blockers, such as Verapamil, Nifedipine, Nimodipine and Diltiazem.
  • Lithium.
What an archaic list :(. The drug from hell, Sansert, that only helps a few, appears first. No mention that Prednisone is really bad for long time use. What is otherwise considered the preventative of first choice, Verapamil, is only listed in 4th position, behind the mind bending Depakote.

Other Treatment:
A rare form of treatment that was first used in the 1930s is called intravenous histamine desensitization.
Since Seymour Diamond acted as "Specialist Medical Reviewer" his expensive but not very successful treatment had to be plugged :(.



As we can see, OUCH has still a lot to do to make CH known, even in the medical community.

PFNADs
Ueli

Title: Re: Anyone read this????
Post by LittleMmonkey on Nov 6th, 2002, 11:29pm
Ok, no sleep apnea here, but I personally know the devil himself.  ch=devil

Title: Re: Anyone read this????
Post by woobie on Nov 7th, 2002, 5:54am
LOL at Ueli!!    This is exactly WHY i asked if anyone had read this.. aside from the sleep apnea thing.  I mean, after reading this site for 4 days now (and OUCH too)... and then going to places like WebMd, DiscoveryHealth, PlanetRX,.MediFocus.com.. etc.. they are just so WRONG!!     As a matter of fact.. GET THIS.. i was looking at one site.. and it said the cluster headaches were a "chronic skin disorder.. causing red, inflamed eyes."    I couldn't believe it.   It was just so totally off that I got mad and left the site.. now, I want to go back to find it .. so i can show all of you what it said.. and I cant find it.  CHRONIC SKIN DISORDER.  WOW

Thanks for all of your input again.  My husband does have sleep apnea, but hasn't ever been put on the breathing machine. .. i just wondered if anyone thought it would help the HAs.. that's all.
thanks again.. tina

Title: Re: Anyone read this????
Post by woobie on Nov 7th, 2002, 7:06am
FOUND IT... LOL

http://www.estoreuk.com/cluster-headaches/

NO clue what they're talking about.. but it's   "trustworthy medical information"
::)
Tina

Title: Re: Anyone read this????
Post by Ueli on Nov 7th, 2002, 10:22am
LOL Tina, we already had a laugh at this site a few weeks back. What they describe is psoriasis. The mix up happened because they employ the dumbest web designer in the world. Most of his links are  broken (error 404) and the few that work lead to the wrong page.   :-[



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