I'm a 42 years old, married and 2 kids. I've been in the Navy for almost 19 years. About 6 years ago I started getting headaches when I was getting home from work. It first started out as very random. As the years progressed, the headaches became more frequent to about 5 or 6 per week always at the same time. Just when I was getting home. I thought it was just stress from my kids (because they can be bad little buggers). I used to mix medications to make myself pass out to get through the pain. It was to the point that one night, I was in so much pain, I took 2 Ibuprofin, 2 Tylenol 1's, 2 Tylenol 3's, and 1 Oxycontin. Much to my chagrin, I still had the pain. It wasn't long before I passed out though. One night, I was awoken with a headache. I looked at the clock and it was 0230 in the morning. Once again, I opened up the pill bottles and took lots. Two nights later, I woke again. Imagine my surprise when the I saw that it was 0230. That is what sent me to the Doctors. After X-rays, CT scans, Ultrasounds, they finally sent me to see a neurologist. The hardest thing I had to do was be honest with the Doctors about the medications I've been mixing. Remember, I'm in the Navy, and they kind of frown on drug misuse. After about 15 minutes, he opened up a book and all I saw was a picture of a demon like creature reaching into an eyeball, and I said YES, that's what it feels like. On a scale of 1 to 10, the pain was an 11 or 12.

He told me that because of the timings, I was a chronic sufferer. I started taking Valproic Acid for short periods, but the headaches came back. I am now on 1500 mg of Valproic Acid per day and I have had two episodes since January.

It's somewhat comforting to know that I'm not the only one out here that deals with these, but also saddened that I'm not the only one that suffers. My wife is very sympathetic, but unable to help. I really sucks being a grown man and crying sometimes about a headache.

Thanks for listening.
Not a day or night goes by that I worry about whether or not the Valproic Acid will continue to do the trick. Every once in a while, I get that feeling in the left side of my head, it's kind of warm around my eye socket, and there feels to be a bit of discomfort. So far, (this year) that's all it's come to, except twice.

Welcome to the board Scott. Are you working with a headache specialist neuro yet? We have seen the best results from doing so. There are hundreds of headache types, some which mimic CH, and it’s important to eliminate those before arriving at a firm diagnosis. I’ve had CH for 33 years, they haven’t killed me yet! You need an organized approach to managing them so they don’t manage your life. I use a 3 pronged approach, many use a similar approach:

1: A good prevent med. A med I take daily, while on cycle, to reduce the number and intensity of my attacks. I use lithium, it blocks 60-70% of my attack. Verapamil is the most common first line prevent, topomax also has a loyal following. Some have to combine lithium and verapamil together to get relief.

Valproic Acid by itself is in Depakene.  depakote is actually a combination of Valproic Acid and Sodium Valproate

I did a search of your med and came up with this. I hadn't heard it as a front line prevent before, although a few had used depakote succesfully.

2: A transitional med. Most prevents will take up to 2 weeks to become effective. I go on a prednisone taper, from 80 mg to zero over a two week period to give me a break while my prevent builds up. Prednisone will provide up to 100% relief for many CH’ers but is harsh on the system and should only be used for short periods of time.

3: An abortive therapy, the attack starts, now what? Oxygen should be your first line abortive. Breathing pure 02 will abort an attack for me in less then 10 minutes, that’s completely pain free. Read this link as it must be used correctly or it will not work

Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or


Imitrex nasal spray and injectables are very effective abortives. I use the injectables, they’re expensive, and I rarely use them, mostly just when I get caught away from the oxygen. The pill form generally works too slow to be effective for CH’ers.

Go to the medications section of this board and read the post "123 pain free days and i think I know why." It’s a vitamin/mineral/fish oil supplement, all over the counter stuff, that’s providing a lot of relief for people who have tried it, it’s a long read, worth the time.

For now, get some energy drinks. Rock Star, Monster, any containing the combo of caffeine and taurine, chug it down as fast as you can when you feel an attack starting. As the Aussie mentioned, many can abort or at least really reduce an attack using these.

Finally, visit our sister board for “alternative” treatment methods outside of mainstream medicine. As you’ll see from all the success stories on this board, there is something to it.

clusterbusters.com


Read everything you can on this board, if you are a CH’er, knowledge is your best ally. We’ll help you all we can.

Joe

Wish you would tell us your base, size of the medical facility treating you (# of beds), etc.

While in the USAF Medical Service I had occasion to work with USN and Army facilities on the East Coast--the big ones--and found all service docs willing/able to move folks around to get them to specialized care sources. I'd assume that you can be open with them re. your meds for trying to second guess "hidden" policies can only work against you.

Since we don't know anything about your current doc, print out te PDF file, below, and give to him.

Thanks all for the great support and advise. I'm actually in the Canadian Navy and there's not a large knowledge base amonst our Doctors. However, I have seen a civilian neurologist. Since then, I have received lots of support from the military physicians. Some of the quick reliefs like the red bull and energy drinks are an interesting idea. I'm sure to give them a try. The problem I would have with that is it would be a double edged sword. Take the caffeine and stay away when I should be sleeping, or deal with a ch when I should be sleeping. If I take narcotics, I get to sleep it off. Hmmm. Interesting, I'll have to see what happens next time I'm at sea. As far as the O2 goes, I have found myself in the ships sickbay with O2 with little success. I'm curious as to when I need to start the O2. When I notice the CH coming, or once they've started. The Valproic Acid I've been taking really seems to keep them at bay.

Again, thanks for all the good advice.

Why I asked for info re. location, etc. Little bits of info changes the picture re. treatment options.
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IF the Valproic acid continues to work, say with it. But if doesn't give high level protection, use the article I sent you to discuss options with the doc. (We are often in the position of havng to educate our docs so that they can take care of us! Interesting paradox, no?) The evidence for its effectiveness is not the best.

Verapamil is the preventive with the longest track record for effectiveness and safety. (Article....)

Print this and use, along with the article,  to talk about options with the doc.
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Headache. 2004 Nov;44(10):1013-8.   


Individualizing treatment with verapamil for cluster headache patients.

Blau JN, Engel HO.


    Background.-Verapamil is currently the best available prophylactic drug for patients experiencing cluster headaches (CHs). Published papers usually state 240 to 480 mg taken in three divided doses give good results, ranging from 50% to 80%; others mention higher doses-720, even 1200 mg per day. In clinical practice we found we needed to adapt dosage to individual's time of attacks, in particular giving higher doses before going to bed to suppress severe nocturnal episodes. A few only required 120 mg daily. We therefore evolved a scheme for steady and progressive drug increase until satisfactory control had been achieved. Objective.-To find the minimum dose of verapamil required to prevent episodic and chronic cluster headaches by supervising each individual and adjusting the dosage accordingly. Methods.-Consecutive patients with episodic or chronic CH (satisfying International Headache Society (IHS) criteria) were started on verapamil 40 mg in the morning, 80 mg early afternoon, and 80 mg before going to bed. Patients kept a diary of all attacks, recording times of onset, duration, and severity. They were advised, verbally and in writing, to add 40 mg verapamil on alternate days, depending on their attack timing: with nocturnal episodes the first increase was the evening dose and next the afternoon one; when attacks occurred on or soon after waking, we advised setting an alarm clock 2 hours before the usual waking time and then taking the medication. Patients were followed-up at weekly intervals until attacks were controlled. They were also reviewed when a cluster period had ended, and advised to continue on the same dose for a further 2 weeks before starting systematic reduction. Chronic cluster patients were reviewed as often as necessary. Results.-Seventy consecutive patients, 52 with episodic CH during cluster periods and 18 with chronic CH, were all treated with verapamil as above. Complete relief from headaches was obtained in 49 (94%) of 52 with episodic, and 10 (55%) of 18 with chronic CH; the majority needed 200 to 480 mg, but 9 in the episodic, and 3 in the chronic group, needed 520 to 960 mg for control. Ten, 2 in the episodic and 8 in the chronic group, with incomplete relief, required additional therapy-lithium, sumatriptan, or sodium valproate. One patient withdrew because verapamil made her too tired, another developed Stevens-Johnson syndrome, and the drug was withdrawn. Conclusions.-Providing the dosage for each individual is adequate, preventing CH with verapamil is highly effective, taken three (occasionally with higher doses, four) times a day. In the majority (94%) with episodic CH steady dose increase under supervision, totally suppressed attacks. However in the chronic variety only 55% were completely relieved, 69% men, but only 20% women. In both groups, for those with partial attack suppression, additional prophylactic drugs or acute treatment was necessary. (Headache 2004;44:1013-1018).

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SLOW-RELEASE VERAPAMIL

Dr. Sheftell applauded the protocol for verapamil used by Dr. Goadsby and colleagues, which entailed use of short-acting verapamil in increments of 80 mg. “This method was suggested by Lee Kudrow, MD, 20 years ago as an alternative to slow-release verapamil,” Dr. Sheftell noted.

“I would agree with using short-acting verapamil, rather than the sustained-release formulation, in cluster headache,” he said. “I prefer the short-acting formulation with regard to ability to titrate more accurately and safely. My clinical experience anecdotally demonstrates improved responses when patients are switched from sustained-release verapamil to short-acting verapamil.”

Dr. Goadsby agreed that his clinical experience was similar. “There are no well-controlled, placebo-controlled, dose-ranging studies to direct treatment. This is one of those areas where clinicians who treat cluster headache have to combine what modicum of evidence is available with their own clinical experience,” Dr. Sheftell commented.
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On ship, your treatment options for an abortive, are limited. Oxygen isn't as long acting as other meds; ease of access/use are issues. Self-injection meds, while the best bet, have obvious limitations for any commander to have to deal with.

Print this and talk with the doc. Advantages: pill, fast acting, long effective life, none of the security concerns re. needles. Barrier: for docs who don't know Cluster, they will be in "no!, no!" mode at first reading because this one is primarily used for severe psychiatric disorders. But, for Cluster, it's a winner. For most people, no side effects with limited use.

While you are on land, if the doc will agree to a trial, using it for 1-3 attacks will: show if it works for you; dose adjustments needed; any side effects of military concern.
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Headache 2001 Sep;41(8):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.

PMID 11576207 PubMed

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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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Since this abstract was first posted Zyprexa has appeared in some lists of recommended meds for CH. [BJ]

  I've not heard of energy drinks causing rebound attacks.  .  . and Japanzaman, if you're having 10 hour attacks, would strongly suggest you check with your headache specialist or neuro for a second opinion.  My worst cycle was 6-8 attacks daily, sometimes 3-5 at night, most 20-45 min, Kip 5-9 and the occasional 1 1/2 - 2 hr + horror . . . with weapons in the house, I'm fairly sure I wouldn't come close to a 10 hr attack without using them.

  My routine for a night hit.  Wake with the beast at a Kip 4-5, grab my O2ptimask (within reach at all times), sit up and open the valve . . . if the "ramp" doesn't stop within  few minutes, grab a Rock Star orange and slam half of it (the 12 oz Rock Star is two servings . . . each contains the caffeine and 1000 mg taurine) . . . if it still persists, drag my 02 cart to the kitchen for a gelpak out of the freezer and rub on the affected side (for me .  . right side) . . . that usually does it and I'm able t go back to sleep (most of the time) . . . but if you slam the whole thing . . . yeh, you're gonna be up for a while.

  Now I can report on how it WAS.  Due to the D3 regimen, have been painfree since mid November . . . after 11 years chronic with the beast.  Enjoying the evening brandy or a beer if I want, been mowing and weedeating (very high pollen count right now), which often caused attacks as one of my guranteed triggers was exhaust fumes, also certain chemicals like carb/brake cleaner . . . NONE of the above are even giving me a twinge . . . and believe me I'm very sensitive to the prospect of him coming back . . . even odd that he's not my constant companion.

  You're in the best place in the world for CH info/caring/sharing.  One of my favorite motto's on this board is, "Nothing works for everyone, but SOMETHING works for everyone", and here you have a very good chance of finding the "something" that works for you.

  Keep reading, keep asking.

     Be Safe.   PFDANs


        Richard