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rbmb
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Headaches are getting old
« on: Mar 22nd, 2004, 3:03pm » |
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Not sure what the point of this post is.....just feel like complaining. In the past, I've gotten HAs in the fall and spring and they lasted for 5-6 weeks but last year and this year they started in late December and have lasted 3 months (I'm still going strong in current cycle and it's now late March with no sign of an end in sight....usually get hit twice a night, a milder one around 8 or9 followed by a bad one between 10 and 1 am).
For preventatives I've tried O2, prednsone taper, lithium, Imitrex pills, Zomig pills, Topomax and now Vermaril. I use DHE IM injections as an abortive. The O2 didn't help, but all of the other preventatives worked at first, then lost their effectiveness after 2-3 weeks. The DHE has been my standby to at least stop the suckers, but now that seems to be not helping much.....HA used to go away after 5-10 minutes of injection......now it's more like 25-30 minutes.....not sure if DHE's even helping or if it's going away by itself.
I'm not a big drinker, but I like to have a couple of glasses of wine in the evening after work but I haven't had a drop of alcohol since late Dec. because I know what will happen if I do.....a killer HA within about 15 minutes. This weekend I was at a family get together and everyone was drinking, talking about their favorite drinks and generally having a good time and I was sitting in my chair drinking my cranberry juice and pouting.......oh well, I suppose my liver is enjoying the break.
I started getting CHs in my late 40s and I'm 55 now.....from what I've read and heard, I'm pretty old to be getting these things.....most suffers are younger than me.
I'm going to ask my neuro to if trying a prednsone taper or going back to Topomax might break this cycle I'm in. Thanks for letting me vent.
Rich
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UN_SOLVED
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Re: Headaches are getting old
« Reply #1 on: Mar 22nd, 2004, 3:15pm » |
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Goodluck Rich. Hope you find something to end your cycle. As far as you being older than some of us...look at it this way...at least you didn't start having them at 19. You had a PF period that most of us didn't get.
Best wishes
Unsolved
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I'm STILL alive ?
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rbmb
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Re: Headaches are getting old
« Reply #2 on: Mar 22nd, 2004, 4:56pm » |
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Unsolved - You are right...it would be horrible to start having these things at a young age and have to deal with them your whole adult life if you didn't outgrow them. Assuming that this cycle does finally end, I guess I'm also fortunate not to have them chronically like many people on this board. Things could be worse.
Rich
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thomas
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Re: Headaches are getting old
« Reply #3 on: Mar 22nd, 2004, 5:05pm » |
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You listed quite a few abortives for preventives...... just thinking out loud here.  Sorry to hear you are having such a rough time. 
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snyder
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Nothing can hurt me as much as my head.
  
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Re: Headaches are getting old
« Reply #4 on: Mar 22nd, 2004, 5:14pm » |
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I remember having what I now know to be my first cluster headaches at age 11 and I am now age 55 as well. The current cycle I am in is in its 18th week but I am reasonably sure I am on the downside of it, finally, and it has been a rough one. There were more of the really intense pain headaches than I ever remember having before. I have lived through it.
I wonder, after all these years, is this my last cycle? Probably not. It is nice to dream though.
Bill
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t_h_b
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Re: Headaches are getting old
« Reply #5 on: Mar 22nd, 2004, 5:52pm » |
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Sorry you're having such a rough time. I see you've tried just about everything but melatonin. Talk to your MD--it might be worth a try. It's helped many of us. People take all sorts of doses so you might suggest starting at 0.5mg regular release at bedtime and working your way up to 12mg in 0.5 or 1mg increments to see if you can hit an effective dose.
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No, it's not a headache--it's a Stage Ten Primary Chronic Periodic Idiopathic Trigeminovascular Cephalalgic Crisis.
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HypnoticFreddy
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Re: Headaches are getting old
« Reply #6 on: Mar 22nd, 2004, 6:03pm » |
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I am in my 5th week. It is getting worse, and I am consistenly having the sleep-awakening types (see my post in the Medications thread).
I find it very interesting one of the posts (WSnyder?) said that he haden't had them in like 40 years. Wow! That is some remission.
Interesting. Yet infuriating because there is no known reason.
-Freddy
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snyder
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Re: Headaches are getting old
« Reply #7 on: Mar 22nd, 2004, 6:18pm » |
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Correction:
I have had them my whole life, all the nearly 45 years. Episodic though they are, they have always been with me.
Bill
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"Comedy is the last refuge of the nonconformist mind." -- Edward Albee
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BlueMeanie
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Re: Headaches are getting old
« Reply #8 on: Mar 24th, 2004, 12:23am » |
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Rich,
Hope your cycle ends soon. I'm sure it won't be much longer. It just sucks when they are longer than you're expecting. Have you tried Verapimil ? Just a thought to check with the neuro about. Many people here use it as a prevent but in large doses. The Melatonin is not a prescription. It is a sleep aid and helps lots of people get a night without a wakeup call from the Beast.
PF vibes to you.
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t_h_b
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Re: Headaches are getting old
« Reply #9 on: Mar 24th, 2004, 6:20am » |
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on Mar 24th, 2004, 12:23am, BlueMeanie wrote:| The Melatonin is not a prescription. It is a sleep aid and helps lots of people get a night without a wakeup call from the Beast. |
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BlueMeanie, melatonin is much, much more than a sleep aid for some of us. In fact it doesn't even help me sleep. However, it has pretty much eliminated my CH attacks unless I have some sort of trigger (alcohol or two lesser triggers together) or forget to take the melatonin (only happened twice). And I'm not the only one.
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No, it's not a headache--it's a Stage Ten Primary Chronic Periodic Idiopathic Trigeminovascular Cephalalgic Crisis.
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Bob_Johnson
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Re: Headaches are getting old
« Reply #10 on: Mar 24th, 2004, 9:25am » |
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Rich, a few ideas re. your meds:
1. Try Ergomar at bed time. Ergotamine is sometimes effective in preventing attacks in folks who have them regularly during sleep.
2. You mention triptan pills: ever use Imitrex injection. Appears to be a more effective form for most people.
3. Consider trying the other triptans. Some evidence that where one fails, another works.
4. Consider Zyprexa to abort. I've had 100% success within 20-minutes.
1: Headache 2001 Sep;41( :813-6
Olanzapine as an Abortive Agent for Cluster Headache.
Rozen TD.
Department of Neurology, Jefferson Headache Center/Thomas Jefferson University Hospital, Philadelphia, Pa.
OBJECTIVE: To evaluate olanzapine as a cluster headache abortive agent in an open-label trial. BACKGROUND: Cluster headache is the most painful headache syndrome known. There are very few recognized abortive therapies for cluster headache and fewer for patients who have contraindications to vasoconstrictive drugs. METHODS: Olanzapine was given as an abortive agent to five patients with cluster headache in an open-label trial. The initial olanzapine dose was 5 mg, and the dose was increased to 10 mg if there was no pain relief. The dosage was decreased to 2.5 mg if the 5-mg dose was effective but caused adverse effects. To be included in the study, each patient had to treat at least two attacks with either an effective dose or the highest tolerated dose. RESULTS: Five patients completed the investigation (four men, one woman; four with chronic cluster, one with episodic cluster). Olanzapine reduced cluster pain by at least 80% in four of five patients, and two patients became headache-free after taking the drug. Olanzapine typically alleviated pain within 20 minutes after oral dosing and treatment response was consistent across multiple treated attacks. The only adverse event was sleepiness. CONCLUSIONS: Olanzapine appears to be a good abortive agent for cluster headache. It alleviates pain quickly and has a consistent response across multiple treated attacks. It appears to work in both episodic and chronic cluster headache.
------------------------------------------------------------------------ --------
Olanzapine has a brand name of "Zyprexa" and is a antipsychotic. Don't be put off by this primary usage. Several of the drugs used to treat CH are cross over applications, that is, drugs approved by the FDA for one purpose which are found to be effective with unrelated conditions--BJ.
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Bob Johnson
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Charlie
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Re: Headaches are getting old
« Reply #11 on: Mar 24th, 2004, 2:34pm » |
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Sounds nasty and sorry you have to deal with this horror. I'm 57 and they have been in remission for 13 years. I have no idea why. Anyway, you might try this technique. It worked for me and it's harmless in any case:
Dr. Wright’s Circulatory Technique
What follows is a technique learned from a neurologist:
I am not sure what mechanism is triggered by this method but whatever it is, at least indirectly helps kill the pain. I do know that this technique has nothing to do with meditation, relaxation, or psychic ability. It is entirely physical and takes some work. It involves concentrating on trying to redirect a little circulation to the arms, hands, or legs. It can described as a conscious circulatory flexing. Increased circulation will result in a reddening and warming of the hands. Try to think of it as filling your hands with redirected blood. The important and difficult part is that it has to be done without interruption through the pain. Do not give up in frustration. It may not work on the first try. Every now and then it will work almost immediately. I lived for those moments. Try experimenting between attacks. You will find that it gets easier with practice.
I was given less than five minutes instruction in the use of method. The doctor, while placing his arm on his desk, showed me that he could slightly increase his arm and hand circulation. After several attempts, I was able to repeat this procedure and use it successfully. I have had about a 75% success rate shortening these attacks. My 20 minute attacks were often reduced to 10 minutes or less. Once proven that I had a chance to effectively deal with this horror, I always gave it a try as I had nothing to lose but pain.
Perhaps it will help if you think of it as a slight expanding of the artery into your arm while at the same time literally trying to fill the arm as if it is were an empty vessel. I used to try to imagine I was pushing blood away from my head into my arm. Use your imagination. There is one man who wrote that his standing barefoot on a concrete floor shortened his attacks. This may be similar as it draws some circulation away from the head. Cold water, exercise, or anything affecting circulation, seems to be worth a try. My suggestion is to not let up immediately when the pain goes. Waiting a minute is probably a good idea. So long as you do not slack off, this has a chance of working.
This technique is very useful while waiting for medication to take effect or when none is available. It costs nothing, is non-invasive, and can be used just about anywhere. It is not a miracle but it helped me deal with this horror. It can be a bit exhausting but the success rate was good enough for me and a cluster headache sufferer will do just about anything to end the pain. It gives us a fighting chance.
I hope this technique is helpful and I wish you the best of luck
Charlie Strand
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rbmb
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Re: Headaches are getting old
« Reply #12 on: Mar 24th, 2004, 7:26pm » |
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Charlie,
Thanks for the info.....I'll try it. I've had family and friends suggest all manner of "cures" including acupuncture, sleeping with magnets in my pillow, having my blood acid/akalinity checked, various herbs, etc. and I know that they mean well but I view some of these ideas as basically witchcraft. Maybe that's a cynical viewpoint but I am one of those who believes that everything happens for a reason and that our failure to understand why some things happen is our lack of knowledge about what is really going on (we don't have all the facts).
From what I've read about cluster headaches, they are poorly understood but there seems to be agreement that they are a vascular headache.... pressure from expanded blood vessels pushing against surrounding tissue. This seems to born out by the fact that alcohol or other substances that make the blood vessels expand bring on HAs or make them worse and substances that contract blood vessels bring relief (Imitrex, DHE, etc.). It doesn't seem to be clear what causes the blood vessels to expand in the first place(something happening in the hypothalamus?) but it stands to reason that anything that draws blood away from the head to the extremities would help relieve the pressure and thus the pain. Who really knows?
Rich
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