Cluster headaches

zach016

Hi D.D.,

Cluster headaches or 'suicide headaches' are really awful. I've had migraines for about 30 years and started getting cluster headaches about 7 years ago. NOT FUN!!

Many times I gave myself black eyes by banging one side of my head against the door frame in the hope that I would transfer some of the pain to another part of my body - and possibly release some endorphins to take the pain level down. They definately caused me to reevaluate my pain scale!!

Surprisingly, at least to me, giving the patient oxygen has abated these headaches in some people. I don't know the percentage, but anything greater than a snowballs chance in heck is worth trying IMO!! Here I needed to get my Dr. to write a Rx but it wasn't a big deal and was inexpensive. It didn't work for me unfortunately.

Can you give us some more information about them? How long has he had them? How long do they last? What types of treatment has he tried? What meds. has he tried? What Dr.'s / specialists has he seen and what did they say? Who gave him his Dx of 'cluster headaches'?

Zach016

DitoDupe

Well I am not really sure what kind of med it is that he takes but it is supposed to act as a 'preventative'. He has had them for about 20 years and does not get them as often anymore, but when he does they can be as short as a day to as long as a week and a half. He said that no doctor has ever told him of any treatment he can take that will guarantee results. So he generally just suffers through them until he feels better. It is horrible seeing him that way it's like he is is absolutely useless to himself when this is going on and I have to help him with the smallest tasks.

zach016

Wow, the longest ones I have had where the pain is coming and going reg. has been 4 days, which is long for cluster headaches from what I've read.

You won't ever get a guarantee that something will work. If you do, run from the person that is giving it!! LOL.

If he isn't getting them reg. then he is right to not be on a 'preventative' medication. I'm sure you know that is a med. taken to stop them from coming.

Mismanagement from Dr.s when it comes to cluster headaches is really high!

For acute attacks oxygen, like I mentioned in a prev. thread, works for a high enough percentage of people to try.

Has he tried any of the triptan medications? They have been a godsend for a pretty good percentage of migraineurs AND cluster headache sufferers.

The treatment that seems to have the best results is a subq. sumatriptan injection. They come pre-loaded and are very easy to administer at home and they might be the answer for him!!

The end of the line therapy, of course are pain meds.. After 20 years of trying everything under the sun that is what I rely on now and while they don't take my pain totally away, they take it from a 9.9 (gotta save that 10) down to a 4 or 5 which is heaven.

Zach016


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DitoDupe

I talked to him last night about it and he said he has done the oxygen thing which like you had no effect on him. I will ask him today to see if he has tried the other options you suggested.

I myself have tried triptan meds since I ge horrible migraines and that didn't work for me at all but maybe he should give that a try if he hasn't already.

Thank You so much for your suggestions.

eddie155

hi,
whats the difference between cluster headaches and migranes?

zach016

Hi Eddie,

If you can believe it one main difference is the level of pain. Suicide rates in cluster headache sufferers are much higher than migraine sufferers and migraines are gawdawful!!

More women than men get migraines but that is flip-flopped when it comes to cluster h/a's. Clusters tend not to last as long as migraines and tend to come and go thru the years rather than happpen every week or two.

For me, they come on much faster than a migraine does so they are hard to 'head off at the pass'.

Zach

lynne19

Zach,
I just joined today because my husband suffers from cluster headaches and we are looking for help. How do you know about them?

Just read more & saw that you get them too. I feel for you, I know what Jeff goes thru. Oxygen has helped but more like a bandaide. We are trying to brake the cycle and nothing is hellping. Fri. he started w/ Imitrex injections, we aren't sure if they are working yet. Any other ideas?????
Thanks,
Lynne

JoAnn555

Lynne,

I'm a female who has suffered from Cluster headaches (Chronic Paroxsymal Hemicrania) since the age of 9. I was finally diagnosed and treated around the age of 30. My neurologist wanted to know how I dealt with the pain all those years without medication. I sat and rocked squeezing my head between my knees, and cried. The pain was always on the top, right side of my head. I can pinpoint it with a finger. It's just like someone takes an icepick and repeatedly stabs me in the same spot of my head. Most people get the pain behind an eye. I'm afraid I'd be blind by now if I had gotten pain there!

Anyway, my neurologist said proper treatment is a very strong anti-inflammatory. He put me on Indocin. Indocin really works well when I get CHP attacks, but it takes about 24 hours to build up in my system before it kicks in. I'm not sure if Indocin is something a person can take in a preventative sense. Anti-inflammatories are hard on the stomach. My attacks are months apart lasting for 1-2 weeks at a time. If your husband's attacks have long breaks between, and he hasn't tried Indocin, it might be worth discussing with his doctor.

srhodes83

hey guys, i was suffering from cluster headaches for about 2 years when a neurologist decided to put me on depekote, i'm not sure if i spelled that correct or not but about 2 weeks after starting the depakote, i have been cluster free and its been about a year now, maybe try it out. good luck to everyone

Shane