Hi my name is Eddie.  I am 29, male, and living with ch (if you can call it living Cry).  I have been diagnosed by Diamond Headache Clinic in Chicago, IL in 2005.  I also get migraine headaches, which pale in comparison.  I recently started a new episode, which I fear may have switched from episodic to chronic.  I have had one episode last longer but that was years ago, I am trying to remain upbeat and hopeful.  I recently started seeing a new neurologist.  I do not have heath insurance and have applied for assisted care from the local hospital, but in the mean time I am in the midst and without.  I am currently on Verapamil (160mg) and Topamax (125mg) nightly.  So far not much has changed.  I have been on these medications for over a month now with little change.  I am at four to five attacks per day and they are the worst they have ever been.  In the past 7 weeks I have been in the ER for pain control 8 times.  Earlier today I called the on-call neurologist and it happened to my doctor.  He said he was instructing the ER not to give me the pain injection anymore.  What should I do?

I am allergic to:
Imitrex, Zomig, DHE, and Celebrex.
O2 treatments have been ineffective.

Other abortive meds/treatment I have tried:
Maxalt, Midrin, Treximet (allergy; Imitrex), O2, 2% Lidocaine Nasal, Cafergot

Other Rx:
Vivactil, Idomethacin, Depakote, Prednasone,

OTC Meds:
Excedrin Migraine, Tylenol, (other NSAIDS, but proven pointless)

There could be more but at this point I can't remember.  In the last move I lost my CH binder and all the info it contained.  I have been doing my best to reconstruct the binder but it has been a challenge.

I am in desperate need of an effective means of pain control until we can get this under control.  I am not looking for a long term narcotic fix, but at this point they are the only thing that lessen the pain, and I cannot live with this anymore.  I'm about to end it myself.

I am well aware of the throws of addiction as my aunt is a crack cocaine addict and my mother made my siblings and I attend the family classes.  If anyone has any recommendations based on their experiences please please please let me know.  I beg you.  Please email me directly if it contains any person or sensitive information you wish to remain private.

Hi Eddie

No mention of verapamil or lithium. Both of these work pretty well for a lot of people and together for some where one alone doesn't work.

How have you been using oxygen? Have you a non-rebreather mask and a high flow rate, 15lpm or higher, with higher being better and hyperventilating?

Read up about using vitamin D - START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE - it's a long read now, but it has helped a lot of people.

Keep reading, hope we can help.

There is a mention of verapamil in the first paragraph, but not any level that can help prevent.


Quote:

I am currently on Verapamil (160mg) and Topamax (125mg) nightly.  So far not much has changed.  I have been on these medications for over a month now with little change.

As Mike alludes to with oxygen, it may not be that preventives and abortives are not working, but in how you use them. 

For instance, the 160mg verapamil is an introduction to your system, this may be why nothing has changed, it needed to be altered over that month.  It should be gradually increased by your doctor until it can have an effect on your clusters.  Getting gradually to 480mg/day may be a tremendous help. 

 


Quote:

O2 treatments have been ineffective.

Mike's questions are important here. Describe your oxygen experience, it would be good to hold onto this equipment.  Proper mask and flow?

I'm not being blind to your $ problems but need to make an "official" recommendation that you find a headache specialist, not any general neuro.
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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.
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ER visits: waste of time and $; ditto for narcotics/pain meds of any kind.

Need to really boost Verapamil, but need a doc both to get it and supervise you at these doses.
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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).

=======================================
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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Print the PDF file, below, and use to discuss options with any doc you see--as well as inform yourself about the range of choices you have.
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If you have a true allergy to Imitrex, etc., you might ask your doc about a trial of:

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.
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Since this abstract was first posted Zyprexa has appeared in some lists of recommended meds for CH. [BJ]
[The limitation is the need to keep total dosing low but it has been as effective as Imitrex for several of us.]

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Verapamil at a higher dosage, or lithium could be a way to go. It sounds like you are experiencing a really nasty cycle, and I for one can sympathize. There are other less legal routes you can take that have worked for many (clusterbusters). I also recommend you take a look at Batch's vitamin D3 regimen. It may not stop all the headaches, but it could reduce the amount and intensity.
Try to hang in there- this cycle could end any day.

I'm with Japan man. Go to the meds section and read the post titled 123 pain free days and I think I know why. A daily vitamin routine that's helping many. Then go to clusterbusters.com and learn how people are getting their lives back through less traditional medicine.

Joe

Eddie,
Your photo looks like you and your woman are happy together, based on her alone, don't end it! 

We here understand your pain, emotionally, physically and financially.  Many of us here, includingh myself, have gone through cycles without health insurance.  It's not easy but can be done! 

Ever slam an 8 ounce can of  Redbull, Rockstar, Monster energy drink at onset of an attack?  It helps for many to abort attacks and/or lessen the pain intensity.

Got a bag of ice or frozen peas?  Might consider applying it to your eye, temple and neck for some relief.

My guess is your o2 experience was lacking because of how you were using it and what you were using.  As requested above from others, please describe what you are using and how you are using it.  Just to cut to the chase...you can obtain welders o2 TODAY without a prescription/need for health insurance.  You can obtain a NON-rebreather mask called the Optimask from the CH.com store, take about 2 days for shipping, order from the yellow tab on left side of your screen.  You will need a regulator that will properly fit your o2 tank, it must be a high flow rate to support hyperventilation for fast aborts.  you can order one custom made from Flotec in Indianapolis, you can get a welders regulator TODAY from a nearby store called Harbor Freight Tools.

Your Verapamil dosage is extremely low for CH's and it's not of benefit to you, so you may consider speaking with your doctor about increasing the dosage, by ALOT!  Many of us take over 480mg daily during cycle. 

Did the Prednisone help you in the past?  If you get a Verap script for 480mg, get a script for Pred to go with it.  Pred alone is not worth it, as Pred is designed as a transitional med to provide relief while the Verapamil (preventative med) is in the process of titrating your blood to therapeutic levels, often 10 to 14 days; hence the Pred taper of 10 to 14 days.

What makes you think you're going chronic?  FYI....there is nothing you can do about going chronic or remaining episodic, except wait at least one full year of cycle before determining...so why waste your emotional energy on the unknown?  Regardless, you will need a good preventative treatment and many here on this site can be of assistance with their stories and recommendations.  "to each his own."

Hang Tough! ;)

-Gregg in Las Vegas

Thanks everyone for the grand advice.  I am taking it very much to heart.  I have used O2 in the past with little to no success.  I am familiar with the non-rebreather mask and 100% high-flow starting at 12-15 lpm and up to 22-26 lpm.  The problem is that I cannot stand the pain while we figure out how to control them.  I am literally at the end of my rope.  Going to the ER was my last line of defense for pain control and now that is gone.  I just don't know what to do.  It's like my neurologist just said. "Live with it."

I'm not just looking for a narcotic fix or sympathy from people.  I am literally out of options.

Then PLEASE visit clusterbusters.com.  not a bunch of crazy doper's but people just like you. People with a shitty condition that often wont respond to traditional medicine. Nothing to lose and a life to get back.

Joe

Hi Eddie
Regarding clusterbusters, you may find this National Geographics video inspirational: START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

(START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE)

I have actually read a little bit about this and I have read that there is an actually compound out there that is viable and it works the same way as the hallucinogenic forms of the drugs referenced,and it was engineered and it had the tripping agents removed for cluster headaches but the patents expired and no drug companies want to pick up the patents because they can make more money off less effective treatments.

Wikipedia link for this - START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

There are a load more articles via Google - START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

The problem with the non-hallucinogenic 2-Bromo-LSD is that we can't really count on it happening anytime soon.  If you are up for trying to treat yourself with psychedelics but are not looking forward to the trip, the Rivea/Turbina Corymbosa, Morning Glory, or Hawaiian Baby Woodrose  seeds might be where to start.  Many people have found they can take the seeds, go to sleep and sleep through their mild trip completely without noticing psychedelic effects.  Many people have reported months of help.  The seeds are legal, cheap and easy to procure. 

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

For me, the seeds were only mildly effective while Psilocybin mushrooms have hands down been the most effective and reliable abortive I have come across. 

Lots more info and people with info on our Clusterbusters page....

-Ricardo