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        New Message Board Archives >> 2004 Cluster Headache Specific Posts >> Night headaches
        
(Message started by: Bob_Johnson on Jul 4^th, 2004, 4:34pm)

Title: Night headaches
Post by Bob_Johnson on Jul 4^th, 2004, 4:34pm

Curr Opin Neurol. 2004 Jun;17(3):295-9.

Rare nocturnal headaches.

Cohen AS, Kaube H.

Department of Clinical Neurology, Institute of Neurology, London, UK.

PURPOSE OF REVIEW: This review describes rare headaches that can occur at night or during sleep, with a focus on cluster headaches, paroxysmal hemicrania, short-lasting unilateral neuralgiform headache attacks with conjunctival injection and tearing, hypnic headache and exploding head syndrome. RECENT FINDINGS: It is known that cluster headaches and hypnic headache are associated with rapid eye movement sleep, as illustrated by recent polysomnographic studies. Functional imaging studies have documented hypothalamic activation that is likely to be of relevance to circadian rhythms. These headache syndromes have been shown to respond to melatonin and lithium therapy, both of which have an indirect impact on the sleep-wake cycle. SUMMARY: There is growing evidence that cluster headache and hypnic headache are chronobiological disorders.

PMID: 15167064 [PubMed - in process]

Title: Re: Night headaches
Post by Kris_in_SJ on Jul 4^th, 2004, 8:33pm

OK - I'll give you that cluster syndrome might be a chronobiological type of disorder, but one size doesn't fit all. In my case, there's no doubt that it has some bearing, though none of my attacks come during sleep. I can set my clock by my 9:30 - 11:00 pm attacks (and in my most recent cycle, 3:00 - 4:00 pm as well). It seems to me, that these guys are reaching a bit.

Is it unrealistic to ask, that instead of them searching for a cause, they focus instead on searching for a cure?!?

Kris

Title: Re: Night headaches
Post by D on Jul 5^th, 2004, 12:37am

I agree kris_in_SJ ... The medical profession and the pharmaceutical corporations seem to have no limits regarding human distress.

Peace and Positive Energy

D

Title: Re: Night headaches
Post by Bob_Johnson on Jul 5^th, 2004, 7:59am

Kris, like you, my attacks are all early evening--which means that our biological clock is set for that time. There is a growing body of evidence that this "clock" mechanism affects many body functions--some of the most interesting is the concept that giving certain medications are most effective when administered at certain times of the day. A new area of research but promising.

But the point being, for people who have very regular cluster attacks, it suggests that they have a stable biological clock somehow affecting them. This report is not saying that all, or even most, clusters are night time events. The point of this line of research is to reveal that some, as yet not fully understood mechanism, is involved in cluster. It gives some clues to guide future research.

Your final question is critical: Cure is not possible until we know the actual cause of a problem. All of our abortives are treating symptoms because it isn't clear what is the actual CAUSE of clusters.

When Goadsby's ground breaking imaging research was first published there was a rush of messages here within weeks--why don't we have a cure yet? The question revealed that folks don't understand that knowing that a certain part of our brain is INVOLVED in cluster DOES NOT tell us HOW or even IF that part of the brain is the CAUSE of clusters.

Title: Re: Night headaches
Post by don on Jul 5^th, 2004, 8:12am

Quote:

Is it unrealistic to ask, that instead of them searching for a cause, they focus instead on searching for a cure?!?

UHHH? Wouldn't you need to know the cause in order to address it with a cure?

Title: Re: Night headaches
Post by miapet on Jul 5^th, 2004, 10:30am

It would be nice if they would at least come up with something that worked . . .and didn't have, sometimes, devistating side-effects . . . either short-term or long-term . . .
IMO, it's obvious that they don't have a loved one who is suffering . . .nor one who now has other health battles to deal with, due to the harmful effects of 'the medicine' that's supposed to make them feel better.
I don't see how destroying a person's vascular system, or turning them into a zombie, or having such severe edema that shoe boxes fit better than shoes, or any of the other 'side-effects' that clusterheads have to deal with in an effort to get SOME relief (which may or may not work, and may or may not last very long) is actually good science or good care . . .but who am I to ask such silly questions . . .
*positive light and enregy*
miapet

Title: Re: Night headaches
Post by ave on Jul 5^th, 2004, 11:19am

If you don't know what exact mechanism causes clusters, you cannot find a cure, just throw some meds at the pain, that have a better than negligeable track record.

If I were a pharmaceutical engineer with a loved one suffering, I would, that is true, work the harder to find a cure.
BUT IT WOULD NOT GUARANTEE MY FINDING THE CURE

t'aint that easy...

Title: Re: Night headaches
Post by Kris_in_SJ on Jul 5^th, 2004, 8:21pm

OK - I take back some of what I said. I'm an educated person and certainly understand the importance of finding the cause prior to finding the cure. Consider me put in my place.

I guess you can just call me frustrated!!! There's so much literature out there ... and so many different types of studies taking place .... for me it's like wading through a huge stack of hay to find a little needle of hope.

Thanks for all your research Bob!

Kris

Title: Re: Night headaches
Post by don on Jul 5^th, 2004, 8:29pm

Quote:

for me it's like wading through a huge stack of hay to find a little needle of hope.

True but the same can be said for countless other suffers of more devastating and/or fatal illnesses.
Cancer, Parkinsons, etc. Cluster Headache is by no means in a boat of it's own in that respect.

Then there are others with a known cause , HIV/AIDS, but have no cure.

Knowing the cause doesn't guarantee a cure.

Title: Re: Night headaches
Post by D on Jul 5^th, 2004, 8:39pm

Excerpt From cb.com
As most of you will be aware, most if not all medications currently used by cluster sufferers are ones specifically designed for the treatment of other medical conditions, such as migraine headaches. This research will go directly toward finding "cluster specific" medications, rather than borrowing something designed for other ailments and used as a "just try this, it works for them," medication.
Mr. Floyd

Cause & Effect are great areas for research but in the mean time it seems plausible to me for someone to focus on a solid abortive and/or preventive developed specifically for us! Personally I never met my hypothalamus nor the culprit that ‘caused’ the abnormality, hell I don’t even know with certainty where it is.
My apologies if my agreement with Kris’s initial comment was less than scholarly… shrug.

Peace and Positive Energy
D

Title: Re: Night headaches
Post by don on Jul 5^th, 2004, 8:49pm

Quote:

Cause & Effect are great areas for research but in the mean time it seems plausible to me for someone to focus on a solid abortive and/or preventive developed specifically for us!

Not neccesary to research it. The meds out there are affective, (Verapamil, imitrex, etc) they are just off label.

What needs to be done is to label and market them as a CH med so that the insurance companies will cover the amounts and dosages a CH sufferer requires.

Title: Re: Night headaches
Post by D on Jul 5^th, 2004, 9:13pm

on 07/05/04 at 20:49:03, don wrote:

Not neccesary to research it. The meds out there are affective, (Verapamil, imitrex, etc) they are just off label.

.

Not for everyone pal.

Peace and Positive Energy

D

Title: Re: Night headaches
Post by don on Jul 5^th, 2004, 10:55pm

Quote:

Not for everyone pal.

Care to explain.

Title: Re: Night headaches
Post by UN_SOLVED on Jul 6^th, 2004, 12:09am

on 07/05/04 at 20:49:03, don wrote:

What needs to be done is to label and market them as a CH med so that the insurance companies will cover the amounts and dosages a CH sufferer requires.

Try getting any insurance or pharmacutical company to cover how much Imitrex I require ! It's not going to happen.

Unsolved

Title: Re: Night headaches
Post by D on Jul 6^th, 2004, 4:34am

on 07/05/04 at 22:55:03, don wrote:

Care to explain.

I do not mind at all.

High blood pressure medications are known historically to cause ‘pharmaceutical induced impotence’ verapamil is a high blood pressure medication. All very well documented and physicians are well acquainted with this knowledge, as are the pharmaceutical corporations. As if that is not enough to make one reconsider this usage for cluster headache??? Here are some more:

If you experience any of the following serious side effects, stop taking verapamil and contact your doctor immediately or seek emergency medical treatment:
· an allergic reaction (difficulty breathing; closing of the throat; swelling of the lips, tongue, or face; or hives);
· an unusually fast or slow heartbeat;
· shortness of breath (heart failure);
· fainting;
· abnormal behavior or psychosis;
· jaundice (yellowing of the skin or eyes); or
· swelling of the legs or ankles.
• Other, less serious side effects may be more likely to occur. Continue to take verapamil and talk to your doctor if you experience
· unusual headache, fatigue, or tiredness;
· insomnia or trouble sleeping;
· vivid dreams;
· hair loss;
· nausea or diarrhea; or
· increased urination.
• Side effects other than those listed here may also occur.

Floridian posted on 6/28: Fresh Research-Imitrex Increases Headaches
Many people agree!
The UK says they have been discussing the same thing, and tossed in that they were discussing the fact that preventative prolong cycles, particularly verapamil…
Joshman420 posted on 6/28: Imitrex Injection took me from PF to KIP 10
In my opinion, more research does need to be done for CH specific medications, what is currently being used does not work for everyone, or they would not still be having headaches!
For many people NONE of these medications work, and the side-effects are devastating, both physically and psychologically.
And for your information in 1993 verapamil (calan) almost killed me! Imitrex did nothing for me except take me from k-6 to a hard k-8 cycle. Ergotamine elevated my blood pressure to the extent I had to be hospitalized… I could go on and on but it depresses me to regress to that horrendous nightmare era of my life.

“Do what you have to do” -no problem- but do not assume or surmise that these medications are a good choice for everyone. In my opinion they are not a great choice for anyone.
Peace and Positive Energy

D

http://home.earthlink.net/~dpn123/

Title: Re: Night headaches
Post by Bob_Johnson on Jul 6^th, 2004, 8:46am

Quote:

In my opinion they are not a great choice for anyone.

D, I was reading your message comfortably until this closing. To set a standard that there should never be any adverse effects from any medication essentially means that we could use nothing. Zero tolerance is simply an unrealistic expectation.

We are constantly balancing risk vs. benefit when we walk, drive, have surgery, take aspirin--at every decision point in our lives. Had I chosen to not have surgery because of the known risk of death by anesthesia I would, today, be dying from bone cancer because I didn't have my prostate cancer treated. We know the potential for Cluster to seriously distort our potential for "normal" life and so accept some risk to gain some control.

In the end, the only protection we have is information and a willingness to use it, i.e., to evaluate the risk of any course of action, choose, and act.

Some of the most distorted lives are found in people who, anxious to a the point of paralysis, are unable to do this balancing of risk vs. benefit so that they can live their lives in an imperfect reality.

Title: Re: Night headaches
Post by don on Jul 6^th, 2004, 9:07am

Quote:

unusual headache, fatigue, or tiredness;
· insomnia or trouble sleeping;
· vivid dreams;
· hair loss;
· nausea or diarrhea; or
· increased urination.

Certainly wouldn't want to loose hair or piss to much.

I'd much rather suffer the most intense pain known to man.

Those types of disclaimers can be found on damn near any and all medications produced for anything.

Title: Re: Night headaches
Post by pamstroud on Jul 6^th, 2004, 10:31am

on 07/05/04 at 20:49:03, don wrote:

What needs to be done is to label and market them as a CH med so that the insurance companies will cover the amounts and dosages a CH sufferer requires.

The info packet that comes with Imitrex now includes cluster as an indication.

Pam

Title: Re: Night headaches
Post by Prense on Jul 6^th, 2004, 12:04pm

on 07/06/04 at 10:31:34, pamstroud wrote:

The info packet that comes with Imitrex now includes cluster as an indication.

Pam

Trex has been labled as a CH med for a while now, but is not really marketed as such. The label states the 2 per 24 hour limt (injections), but goes on to say that the medication has not been tested for more than 4 per month. Simply, it is a migraine abortive that they added CH to. It is still marketed as a migraine abortive.

Chris

Title: Re: Night headaches
Post by miapet on Jul 6^th, 2004, 12:46pm

If you read D's post prior to this one . .it said: not for everyone pal . . . .and then was asked to expand . . .so he did . . . saying it's not a good choice for anyone is his opinion . .he has a right to that . . .he also posted how verapamil didn't work for him AND almost killed him . . .I think that's a pretty drastic side-effect . . and if it happened to him, it could happen to someone else . . .

I think the just of this whole thing is: clusterheads have to continually be making 'better bad choices' as the drugs are not user friendly . . . AND, for many people, the side-effects far out-weigh the limited help . . .they don't work for everyone . . .if they did, none of y'all would still be having headaches . . .
*positive light and energy*
miapet
edit: and what's wrong with wanting SPECIFIC clusterheadache related research into finding a drug SPECIFICALLY for clusters????

Title: Re: Night headaches
Post by D on Jul 6^th, 2004, 2:18pm

on 07/06/04 at 08:46:53, Bob_Johnson wrote:

Bob_Johnson

I stand with my statement. I reread my post I cannot see where I said 'never' or anything regarding zero tolerance for risk.

Let me add something else that might raise your eyebrow as well. I am convinced some of these pharmacies prescribed for some of us are making things much, much worse for us all.

I am entitled to my opinion not because everyone has an opinion but because by God, I earned the right to my opinion.

I do not wish to be argumentative or confrontational, I want to be helpful. I am not under an illusion I also believe the world is saved one man at a time, all else is feigned romanticism.

We all benefit when we all better educate ourselves about the whole process of the wide selection treatments being offered. My advice to anyone is be cautious, try to make good choices.

Peace and Positive Energy

D

http://home.earthlink.net/~dpn123/

Title: Re: Night headaches
Post by miapet on Jul 6^th, 2004, 11:06pm

Interesting post on the General board . .posted today by Filbert: What Dr. Goadsby said...

*pl&e*
miapet

Title: Re: Night headaches
Post by farmboy on Jul 13^th, 2004, 3:05am

I don't know about anyone else but it is so hard to make choices on meds when the dr's don't even seem to give you good info.