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BOL trial at the MHH

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Personal CH history

My first cluster headache (CH) episode was in 1999. The second CH episode started summer 2000 and is still ongoing. CH was diagnosed in July 2005. I have been taking Verapamil daily since July 2005, the sustained release version 2 x 120 mg/day since June 2006. The change from normal release to sustained release Verapamil improved my situation in June 2006.

Most time of the year Verapamil works quite well for me. I use oxygen for treating the remaining attacks. This works very well with the ClusterMasx™ or with an equivalent high concentration non re-breather mask. Usually the peak of the pain severity is gone after less than five minutes of oxygen inhalation. 

In 2008 my CH got worse; a peak of attack frequency during the summer and November / December last year was really terrible. I had the feeling as if the Verapamil didnÂ’t work any more. Oxygen did still stop the attacks in less than ten minutes, but the CH attacks returned within 2 hours.

In 2007 a cardiologist recommended NOT to increase the Verapamil dose, because of the ECG and other cardiologic examination results. This is what my feeling is too; I would find it very hard to take more than 240mg/day, due to unwanted Verapamil side effects.

In December 2008 I had some success with 3 x 2.5 mg Frovatriptan per day, as an additional preventive medication. There weren't any noticeable or measurable side effects; blood pressure and ECG were OK. I stopped the Frovatriptan before the BOL trial, but continued to take Verapamil.

The BOL trial

Starting two weeks before the BOL trial and for four weeks after the third BOL dose all participants had to keep track of each CH attack and of all related observations, medication etc. on standardized forms, similar to these forms here:

http://www.clusterbusters.com/CB.CH.GeneralDiary.pdf'>http://www.clusterbusters.com/CB.CH.GeneralDiary.pdf

BOL_MHH.jpg

BOL MH Hannover, January 2009

The BOL was dissolved in distilled water. I was instructed to take 29 drops = 3.1 mg acc. to the label on the bottle for each of the three BOL doses to be taken.

Some notes I wrote after the trial:


Written Dec 18, 2008

Today I have had the honour and the privilege to join the BOL trial at the MH Hannover. The feeling after dosing was great: A bit like being slightly drunk but a little bit different, funny, perhaps silly, somehow I felt HAPPY!!! I had to stay there for two hours for medical observation. On the journey back from Hannover (appr. 4 hours after the BOL) I had a slight burning sensation in my head on the side were the pain usually is. Also the nose on this side was a bit congested, but there was no pain at all.

Written Jan 8, 2009:

Things improved a lot for me. The second and the third BOL dose were taken at home, Dec. 23rd and Dec. 28th 2008. They did not come with this feeling of "happiness", like the first dose did; I just felt a bit like being slightly drunk for a couple of hours after the BOL.

After the second BOL dose I had a runny nose for a couple of hours (cluster side only), similar to the runny nose I usually have during a cluster hit coming to its end.

After the third BOL dose I had a congested nose for a couple of hours (cluster side only), similar to the congested nose I usually have during the beginning of a cluster headache attack.

The BOL medication does seem to have a positive effect: I have much less attacks than before the first dose and the remaining "attacks" I have are very weak and of short duration. I am not even sure, if I can call this "attacks" any more. The pain intensity is low, side symptoms are reduced and the pain goes away after 10-30 minutes without using any medication or oxygen. During the last three years I have had only very few "attacks" which such low pain intensity. Since BOL I have had "attacks" with low pain intensity only.

Sometimes I still used oxygen to make the pain go away quicker. Usually when I woke up from pain (before BOL) I had to rush to get the oxygen to avoid the pain getting really bad. Since BOL it has happened twice that I woke up from CH pain, turned around and continued to sleep after a couple of minutes.

Febr 12, 2009

Since Jan. 5th I am completely free from CH attacks!!!!!

Febr. 2nd I woke up with a light headache on the cluster side during the night but didn't bother to get up. After about 30 minutes I slept again without taking any medication or oxygen.   

Yesterday afternoon I thought an attack might come up but this feeling disappeared within 5 minutes. ThatÂ’s all I have to report for the last 4 weeks.

Mar 28, 2009

There was just one CH attack of low severity during a plane flight four weeks ago, nothing on the return flight. I am still taking 240mg Verapamil per day.

April 26, 2009

YES, I am still pain free!


Long term results

CH attacks with mostly low severity started again from June to September 2009, with a peak in July 2009. Since Sept 21st 2009 I am pain free again. Sometimes I feel as if an attack is coming up, but it doesn't. I continue taking 240mg Verapamil per day.

In total I had 115 CH attacks from Jan. 2006 – Oct. 2006

In total I had 105 CH attacks from Jan. 2007 – Oct. 2007

In total I had 216 CH attacks from Jan. 2008 – Oct. 2008 (+ 79 in Nov. and Dec.)

Took BOL Dec. 18, Dec. 23, Dec. 28, 2008

In total I had  46 CH attacks from Jan. 2009 – Oct. 2009

Thank you VERY MUCH Bob!

Thank you VERY MUCH ClusterBusters!

Thank you VERY MUCH to everybody else who made this trial with BOL for CH possible!

For me there is no doubt about it:

We have to get BOL into the pharmacies A.S.A.P.!

The first BOL results where presented at the IHS-IHC-2009. LeLimey took a picture of the poster presentation: 

http://community.webshots.com/photo/fullsize/2487881130074489379qMjgsL

The poster presentation abstract text is available here, PDF 3.5 MB, PO88 on page 46 of the PDF: https://www.americanheadachesociety.org/assets/Abstracts_for_IHC_Website.pdf

There is "Donate" button at the bottom of this page, so if you want to support further research please donate to ClusterBusters here or on http://www.clusterbusters.com

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The second CH episode started summer 2000 and is still ongoing.

I take this to mean it had been chronic since?

It appears that after each BOL treatment, phantom hits may be following.

CH attacks with mostly low severity started again from June to September 2009, with a peak in July 2009.

This seems a return to a cycle and regression to episodic, but was still kept muted perhaps from the BOL treatments.  I wonder what would have happened if BOL treated again after six months time.

We have to get BOL into the pharmacies

This was an implication of concern from a prior post about BOL.  Those who've wandered from medical attention into similar acting alternatives to discover effectiveness and bring this trial about may in the future require attachment again with the doctorhood to get it prescribed.  Accessability of BOL by those who helped bring it about, the fruits of their labor possibly being dependent upon finding a doctor to prescribe what may look to a chronic, in guessing so far, like a six-month interval treatment (of three doses) for the first year.  Another had mentioned progress of six months pf.

...the BOL gave me 6 months (with some minor hits in between).

This may be ongoing success.

While maybe a distant bridge to cross, some ideas about working toward access can be informing, especially after compounding the interest and anxiousness with the need of many others by a second trial verification.

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The second CH episode started summer 2000 and is still ongoing.

I take this to mean it had been chronic since?

Yes, this is the word I wanted to avoid.

Nevertheless, I did have pain free periods of more than four weeks during the years 2006 - 2008. But this is due to the verapamil working quite well. I still sort of feel "the beast" behind my eye and in my neck occasionally during such pain free periods, but no full blown attacks. The last time I reduced the daily verapamil dose was in spring 2006 and it did me no good.

Febr. / March this year I considered to discontinue verapamil, but then decided not to do so because of the risk the cluster headaches might return.

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Hi Flash,

pleased to meet you and thank you for starting all this off about ten years ago!

http://www.erowid.org/plants/mushrooms/mushrooms_medical1.shtml#FlashMethod

Perhaps I should tell you about “subject 5” (S5) in the Hannover BOL & CH trial. S5 was not reported in Dr. John Halperns IHS-IHC-2009 poster presentation, because S5 had just started the BOL treatment when the poster presentation had to be submitted for the IHS congress.

Dr. John Halperns IHS-IHC-2009 poster presentation (PDF, 3MB):

http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?action=downloadfile;file=BOL_Halpern_IHS2009-2.pdf

You may have seen our friend S5 at the MH Hannover in the National Geographic video documentary:

http://www.ninjavideo.net/video/47048

S5 was heavily suffering from CH and had about 5 to 6 severe hits per day. High dose corticosteroids didn't help, 960 mg Verapamil per day didn't help, Lithium was useless. He stayed in a specialised headache clinic for two weeks early in the year 2009 and they couldn’t help him. 

With the second dose of BOL in April 2009 he became completely pain free for a period of nine weeks. He only sometimes had some odd “cold attacks” without pain, just the side symptoms, during this time. He tapered of the Verapamil before the first BOL dose and didn’t use any other preventive medication.

After the nine weeks pain free time after BOL his CH attacks started again and soon the hits were as often and as severe as before the BOL treatment.

pf wishes,

Friedrich

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If BOL would be available to be prescribed by a doctor he would definitely want to use it, I think. At the moment he is on Lithium again and considers Occipital Nerve Stimulation.

btw: S5 gave me his permission to tell his story on a public message board, otherwise I wouldn't have done so.

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This is amazing.....

Can`t he get another bol treatment? It`s sad.... Why is it that hard when they can all see the evidence how the medicin works?

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Published online today:

Matthias Karst, John H Halpern, Michael Bernateck, and Torsten Passie

The non-hallucinogen 2-bromo-lysergic acid diethylamide as preventative treatment for cluster headache: An open, non-randomized case series

Cephalalgia first published on March 26, 2010 as doi:10.1177/0333102410363490

[OnlineFirst PDF]  Free full text until March 31st, 2010

http://cep.sagepub.com/cgi/rapidpdf/0333102410363490v1

Found here: http://cep.sagepub.com/pap.dtl

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