I have been suffering though a chronic episode for the last 4 months that is about to bring brig changes in my life- I fear.

This cycle started as any other, and was promptly medicated with Ol' Faithful Verapmil. But over time, the Verapmil has now almost completely lost its effectiveness. I continued adding to my prescribed dosage in a frantic effort to get them under control, but now they have no preventative qualities whatsoever and serve only to take some of the edge of the headaches. I am taking 2.5x 180mg.

Desperate for help, I turned to my doctor and he put me back on a high dosage of prednisone. It seems to keep the bad headaches away, but it does not stop the insomnia. When I lay down to sleep my head feels strange. It is almost as if I can feel all the mechanisms that cause my headaches working frantically to make it happen, only the best they can do under prednisone is keep me awake. Another thing, this prednisone is horribe. My feet are so swooled from water retention that I can hardly get my feet into a shoe, and walking around I feel like Im wearing a boot full of water. My hips, knees, wrists, heck everything hurts. I hate these prednisone pills, they simply dont sit well with me but for now Im stuck with them.

Anyway, so here is my dillema. I can't take it anymore. The sleep deprivation. I have had no more than 3 hours of sleep a night for the last 5 days and it's killin' me. I cant think straight, feel awful, and I have no energy to do anything. I have used up some vacation days at work to try and give me some time to sort this out before I have to go back but the clock is ticking. In my current state there is NO WAY I could function at my job.

So what should I do? I don't want to lose my job over this. Should I talk to my doc and see if he can assist in getting me some kind of medical leave? I have tried to explain my cluster headaches to the boss at work and they simply dont understand. I wish our condition was not called cluster headaches, but perhaps geneothanimsatonitis or some long ominous thing like that. I dont think people can see how simply having a lot of headaches can so strongly affect your life.

To be perfectly honest with you, I am really scarred at the moment. I'm living in the Twilight Zone... I feel if this doesn't get better soon, my life is going to get turned upside down.

Sorry for any grammar errors if there are any. I'm so freaking tired typing this post seems a monumental task. Thanks for you support and understanding.

Get back to your Dr ASAP and ask about getting off the pred early.  You will need to taper!  Also if you are going to stay on the Verap you will probably need to up the dosage.  Also, check the type you are using.  It's been years since I used Verap, so I don't remember which is the best.  You are at about half the dosage I was using to get any relief at all.  You might also ask about using Lithium along with the Verap.  It works well in combo for several.  Wasn't so good for me.

If you want to look at other alternatives you might look into Kudzu.  It is over the counter, but I've found it more effective than Verap and Lithium and without the side effects.  Do a search on here for Kudzu, and if you have questions ask.

Jerry

Two things come to mind immediately.

One is oxygen therapy. I may be the first to respond to your post with the suggestion but I guarantee that I won't be the last. It has definitely helped me and so many others on this board.

The second is your verapamil. I have read countless times that Extended Release doesn't work for CH as well as Immediate Release. The fact that you are taking 180mg leads me to believe that they have you on ER.

Talk to your doctor about switching things around and maybe trying melatonin to help with sleep at night. Excessive caffeine could have an affect on your sleeping habits as well. Are you chugging Red Bulls to help abort attacks?

Always remember, there are things out there that can help, maybe not make them go away, but hopefully lessen the severity, duration, and frequency of attacks. If you are not getting the support or cooperation from your doctor - take a look at seeking out a new one. Most doctors are not trained to deal with these horrors. Find one that specializes in headaches and understands the difference between "just a headache" and CH.

I have tried a prednisone taper in the past and don't feel like it helped my cause at all. Not to say that I wouldn't try it again, but what works for some doesn't work for all. If it did, we wouldn't all be here trying to help.

Are you using anything else to abort an attack? Imitrex injections? Relpax? Zomig?

I'm so sorry that you are having such a difficult time with this. These things are horrible and definitely can lead to the despiration you are feeling now. Glad you are here. Hopefully, this will lead to some helpful answers.

~ Katie

Katie C. wrote on Nov 4^th, 2010 at 1:01pm:

Two things come to mind immediately. One is oxygen therapy. I may be the first to respond to your post with the suggestion but I guarantee that I won't be the last. It has definitely helped me and so many others on this board. The second is your verapamil. I have read countless times that Extended Release doesn't work for CH as well as Immediate Release. The fact that you are taking 180mg leads me to believe that they have you on ER. Talk to your doctor about switching things around and maybe trying melatonin to help with sleep at night. Excessive caffeine could have an affect on your sleeping habits as well. Are you chugging Red Bulls to help abort attacks? Always remember, there are things out there that can help, maybe not make them go away, but hopefully lessen the severity, duration, and frequency of attacks. If you are not getting the support or cooperation from your doctor - take a look at seeking out a new one. Most doctors are not trained to deal with these horrors. Find one that specializes in headaches and understands the difference between "just a headache" and CH. I have tried a prednisone taper in the past and don't feel like it helped my cause at all. Not to say that I wouldn't try it again, but what works for some doesn't work for all. If it did, we wouldn't all be here trying to help. Are you using anything else to abort an attack? Imitrex injections? Relpax? Zomig? I'm so sorry that you are having such a difficult time with this. These things are horrible and definitely can lead to the despiration you are feeling now. Glad you are here. Hopefully, this will lead to some helpful answers. ~ Katie

DITTO!!!
Could not have said it better..

mikstudie wrote on Nov 4^th, 2010 at 1:41pm:

Katie C. wrote on Nov 4th, 2010 at 1:01pm: Two things come to mind immediately. One is oxygen therapy. I may be the first to respond to your post with the suggestion but I guarantee that I won't be the last. It has definitely helped me and so many others on this board. The second is your verapamil. I have read countless times that Extended Release doesn't work for CH as well as Immediate Release. The fact that you are taking 180mg leads me to believe that they have you on ER. Talk to your doctor about switching things around and maybe trying melatonin to help with sleep at night. Excessive caffeine could have an affect on your sleeping habits as well. Are you chugging Red Bulls to help abort attacks? Always remember, there are things out there that can help, maybe not make them go away, but hopefully lessen the severity, duration, and frequency of attacks. If you are not getting the support or cooperation from your doctor - take a look at seeking out a new one. Most doctors are not trained to deal with these horrors. Find one that specializes in headaches and understands the difference between "just a headache" and CH. I have tried a prednisone taper in the past and don't feel like it helped my cause at all. Not to say that I wouldn't try it again, but what works for some doesn't work for all. If it did, we wouldn't all be here trying to help. Are you using anything else to abort an attack? Imitrex injections? Relpax? Zomig? I'm so sorry that you are having such a difficult time with this. These things are horrible and definitely can lead to the despiration you are feeling now. Glad you are here. Hopefully, this will lead to some helpful answers. ~ Katie DITTO!!! Could not have said it better..

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Read this.  If you ain't a Doctor maybe it isn't such a great post.

                    Potter

A chronic whose meds aren't working anymore - that has to be the most hellish scenario of them all, but we've seen some chronics in this same predicament find a way out.

First of all, to help you taper down from the incredibly dangerous sustained high doses prednisone, I hope the newer, much more effective approach to using O2 for aborting attacks using a high liter flow and 100% oxygen can help you as much as it has many many people here who have followed the guidelines found at the oxygen info link to the left of this page.

OK, so there's an abortive that is widely heralded by CH'ers who have tried it, but is generally unknown to the very behind the times and generally quite ignorant medical community.

Along those same lines, for a preventative, there's the clusterbusters.com approach that we've seen turn around some of the most severe chronic cases.

I strongly recommend you suspend skepticism long enough to read this Newsweek article:
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And to watch this video talk on the subject by one of our fellow CH'ers:
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First of all, as someone who is currently on short term disability at 24 no less, absolutely!!!  If your job is in danger and you can't function at it, less money on std (haha funny how that acronym works out) is better than no money unemployed.  I have another 5 months on std to get mine worked out, though during that time I will be living a slightly less luxurious life than I am used to.  Do what you must do and get your treatments tweaked.  As a chronic sufferer I'm sure you know there's a lot out there! 

Potter wrote on Nov 4^th, 2010 at 2:38pm:

mikstudie wrote on Nov 4th, 2010 at 1:41pm: Katie C. wrote on Nov 4th, 2010 at 1:01pm: Two things come to mind immediately. One is oxygen therapy. I may be the first to respond to your post with the suggestion but I guarantee that I won't be the last. It has definitely helped me and so many others on this board. The second is your verapamil. I have read countless times that Extended Release doesn't work for CH as well as Immediate Release. The fact that you are taking 180mg leads me to believe that they have you on ER. Talk to your doctor about switching things around and maybe trying melatonin to help with sleep at night. Excessive caffeine could have an affect on your sleeping habits as well. Are you chugging Red Bulls to help abort attacks? Always remember, there are things out there that can help, maybe not make them go away, but hopefully lessen the severity, duration, and frequency of attacks. If you are not getting the support or cooperation from your doctor - take a look at seeking out a new one. Most doctors are not trained to deal with these horrors. Find one that specializes in headaches and understands the difference between "just a headache" and CH. I have tried a prednisone taper in the past and don't feel like it helped my cause at all. Not to say that I wouldn't try it again, but what works for some doesn't work for all. If it did, we wouldn't all be here trying to help. Are you using anything else to abort an attack? Imitrex injections? Relpax? Zomig? I'm so sorry that you are having such a difficult time with this. These things are horrible and definitely can lead to the despiration you are feeling now. Glad you are here. Hopefully, this will lead to some helpful answers. ~ Katie DITTO!!! Could not have said it better.. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE Read this.  If you ain't a Doctor maybe it isn't such a great post.                     Potter

It would seem to me that a doctor has been seen,becuse Verap is being prscribed (Rx only) But Potter I se where your coming from. I would just assume that anyone with this type of pain has seeked professional help. But then again I know how they spell ASSUME. BY ALL MEANS FIRST THING IS TO SEE A HEADACHE SPECIALIST!!!

I agree about seeing a doctor. My questions regarding meds were simply because there was not a lot of information given in the original email. Thank goodness suggestions were offered to me in my time of need so I did have options to discuss with my doctor.

~ Katie

Not sure if Gabapentin (think it might be known in the US as  Neurontin) is available to you, but worth a try. I had limited success with it.
Definitely get off the steroids, lethal stuff although its good to have a standby course in case you need to break up a particularly vicious spell

Not good as a chronic sufferer with no preventative, sorry to say I know. Thought I was quite tough mentally and physically, but just relying on abortives is a long hard road to go down and finding it a struggle right now

Good luck finding your drug of choice, stay positive and get off the Pred, but gradually

Quote:

Anyway, so here is my dillema. I can't take it anymore. The sleep deprivation. I have had no more than 3 hours of sleep a night for the last 5 days and it's killin' me. I cant think straight, feel awful, and I have no energy to do anything.

I don't think anyone has addressed your sleep deprivation yet. Other than "go see a doctor," with which I wholeheartedly agree! Having said that, I want to assure you of several things here: first, we know what that's like. Second, I believe you when you describe how you feel. Third, you gotta know no matter how bad it feels, you are getting some sleep, and I am afraid it won't kill you. You just wish it would (sometimes, and not really, what you want is a good night's sleep) and as many have said, sleep rocks! Take this to your doc, too. They may want to do a sleep study. CHs are circadian so they really love to come alive during REM sleep. While "sleeping pills" are not generally a good idea, your doc may think its worth giving you a respite. Don't know until you try. You can learn to live on less sleep, or to sleep outside of the normal night patterns. Don't give up on this. You can work with it, around it, or through it as needs be. Blessings! lance

Hi Kurtz.

Doctor hasn't helped that much, here's what I would do....

Taper off the pred.  Be careful and do it right (doctors supervision/recommendations).  Take matters into your own hands.  The medical profession hasn't proven to be as effective as the cumulative advice you will get on this site and at the clusterbusters site.

If you get daytime hits battle them with caffeine and oxygen.  You don't need a prescription for oxygen, check the oxygen info on this site.

If you are a nighttimer try the melatonin regimen.  Other herbs have worked for many also.

Read the newsweek article listed above and watch Bob's video.  The "alternatives" seem to have a very high success rate and will save you thousands of dollars.

I got my episodic ass kicked yearly until I figured out that psilocybes and caffeine are super effective medicine for me.  Don't give up and don't get too worked up about losing your job etc.  We all go through it and with some trial and error and close attention to your pain you will figure this one out. 

People here are smart, many options, choose the ones you like.  I wouldn't put much trust in the medical community on this one. 

**Disclaimer** I know some doctors are very knowledgable on CH and I also agree that it is important to rule out other conditions while figuring out a diagnosis.  But if you read so many posts here, the medical community has been marginal at best with our pain.  (people who still believe in the medical community for CH may commence throwing rotten tomatoes at the Shaggy >:().

Good luck! :)

--Shaggy

Like several others, I'm uncomfortable with you being on Pred for long term/high dosing. Raises the question about your doc's knowledge of headache. If you have the option:

LOCATING HEADACHE SPECIALIST

1. Search the OUCH site (button on left) for a list of recommended M.D.s.

2. Yellow Pages phone book: look for "Headache Clinics" in the M.D. section and look under "neurologist" where some docs will list speciality areas of practice.

3.  Call your hospital/medical center. They often have an office to assist in finding a physician. You may have to ask for the social worker/patient advocate.

4. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE; On-line screen to find a physician.

5. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE Look for "Physician Finder" search box. They will send a list of M.D.s for your state.I suggest using this source for several reasons: first, we have read several messages from people who, even seeing neurologists, are unhappy with the quality of care and ATTITUDES they have encountered; second, the clinical director of the Jefferson (Philadelphia) Headache Clinic said, in late 1999, that upwards of 40%+ of U.S. doctors have poor training in treating headache and/or hold attitudes about headache ("hysterical female disorder") which block them from sympathetic and effective work with the patient; third, it's necessary to find a doctor who has experience, skill, and a set of attitudes which give hope of success. This is the best method I know of to find such a physician.

6. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE NEW certification program for "Headache Medicine" by the United Council for Neurologic Subspecialties, an independent, non-profit, professional medical organization.
        Since this is a new program, the initial listing is limited and so it should be checked each time you have an interest in locating a headache doctor.
------- Re. Verap dosing:

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).

=======================================
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.

====
This med is not one to be used for long periods, as might be needed for ChronicCH but I can imgine a brief trial (6-8 doses) to see if it would abort the CH--as reported in this abstract. I've never seen it mentioned in the literature for this purpose but, perhaps, something to discuss with the doc.

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

--------------------------------------------------------------------------------

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.

Thanks guys.  :)

I saw my doc today and asked to be put on Lithium. Too early to tell if it will be effective or not, but one can only hope.

I suppose if this does not work, I am going to have to pursue some form of medical leave from work. Oddly enough, I think I would feel somehow guilty about doing so. I feel that my condition is so misunderstood and under-appreciated that people might not understand. I also feel a great sense of responsibility to, and take great pride in my job.

I hope I don't have to go down that road, but it is looking more certain by the day. Please god, let this lithium be the answer I am looking for.

Kurtz wrote on Nov 6^th, 2010 at 1:01pm:

...Please god, let this lithium be the answer I am looking for.

IMO, "God" has been trying to let you know that strictly relying on a doctor and standard medical practices regarding CH hasn't been working out so hot so far, and you might want to have a back up plan or two in place (say, high flow 100% O2 for instance).

OXYGEN!

It's cheap, it is a phenomenal abortive, has zero sice effects and can be gotten in tanks from humongous to some small enough to put in your desk drawer at work.

Non-rebreather mask, and regulator that goes to 25 lpm minumum - you can abort at hit at work within minutes and be be ready to take care of business again.

And, I will say this again and again, talk with your employer telling him/her everything about CH and what happens.  And, LET THEM SEE ONE HIT.  Just one and they will see what you are going through and how quickly you can be back at your desk with the right prevents and abortives.  You need both.

Sandy

any static you get from your doctor can be bypassed  by renting a tank from airgas or linde or welding supplier. i own my tank and swap mine out at tractors supply. they are open 7 days a week. you can get a regulator on ebay. i use the regulator from my oxy/acetylene torches. its not fancy but its effective. dont put yourself at the mercy of your doctor. its your head.

also if your interested in a highly effective trusted alternative to conventional meds heres a link to our sister site.

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