Hi,
I have been on this regimen for just over 1(one) YEAR ,just about. My doctors tell me (again) that this amount of time rules out any possible placebo effect…
I suffer from the extreme sort of CH and was diagnosed as intractable CCH
(Chronic Cluster Headache).
Without medication I averaged up to 8 (and more) episodes a day at an average high pain level of kip 8 and an overall average pain level of Kip 6. The CH last 45 to 50 min. without abortive treatment, and are accompanied with all the classic CH symptoms we all know so well.
I have undergone treatment with almost all the schoolbook standards of care preventative / abortive medications for CH, and was a guinea pig to some new and "innovative" treatments.
My candid assessment of all the CH preventative medications follows:
None were really effective, (for me). Some provided limited relief for a while others did not. The few that were relatively effective with moderate to good effectiveness in preventing my CH all carried unacceptable side effects.
When it was clear I was essentially intractable to the standard CH preventative medications, my neurologists suggested blockades… Starting with GLOA (Ganglionic Local Opioid Analgesy) using: Bupivacaine and Buprenorphine, providing me with some relatively effective moderate to good effectiveness.
Later occipital nerve block with betamethasone provided a week to 10 days, relief but nearly destroyed my endocrine system and it triggered a rapid bone mineral density loss, I still undergo a comprehensive treatment to “repair” the
“damage” done (see for more info. My posts about the GLOA).
One of the more "innovative" treatments included the implantation of a bi-lateral ONS (Occipital Nerve Stimulator).
The ONS implant required months of "tuning" to load the most effective stimulation patterns, but even then I became a slave to the ONS as it required constant attention during the day to provide what I consider a moderately effective method of preventing painful attacks. During the night while sleeping it was useless. By the time I woke up the pain was beyond control with ONS. It has since been surgically removed as its overall day and night effectiveness was far less than I had expected.
None of the treatments provided a sustainable magic bullet, or gave me a full (even limited) success in preventing my CH…
The only treatment I have not tried is the CB alternative. It's not that I don’t think it could provide me with some relief, it is just not compatible to my job requirements,
I do need my job…
All treatments had one or more undesirable side effects, that made the risk-reward ratio unfavorable so the choice to continue or discontinue the treatment was made very easy.
The anti-inflammatory treatment (for me) is not a magic bullet.
BUT
I am under very close control and monitoring by doctors in the endocrinology department at KSSG (Kantonspital St. Gallen Switzerland). Even with this disciplined approach, I have the flexibility of adjusting doses of the “ingredients” and this has allowed me to achieve a steady (at the moment) 80-85% reduction in the frequency of my CH episodes. It has also resulted in a significant (over 50%) reduction in the pain level of the remaining episodes… almost never going over Kip 5 anymore.
I achieve all of the above without any immediate apparent undesirable side effects. On the contrary, my bone density (monitored as well) is improving and my current overall sense of well-being is very good.
Next to working full time, and much more, I have picked up a new “kick” -
Paragliding with my older son (age 15), and it is so much fun….. nature from
Above in a slow motion….. the Swiss (Canton Appenzel) landscape is just a joule, A bijou!!
I do have to compromise (in the last 2 month) and take a lower dose (D3) at the moment , due to some possible undiseiereble side effects in interaction with the
bone density Medication (Bon Viva (Ibandronic acid (INN) or ibandronate sodium (USAN)).
There is still the last bad habit – smoking - a habit I should give up and I might feel even more energetic… and I do work hard on stopping, with the help of
The dedicated doctors in the Pain therapy department at KSSG (Kantonspital St. Gallen, Switzerland) and having good success, just I wish it would be sustainable.
To all who haven't tried the anti-inflammatory treatment and would like to give it a chance, it can take time (in some cases even longer time) to achieve significant results. For me it took over 4 months and a lot of discipline.
However, the flexibility of dosing the “ingredients” to achieve the current results, and knowing there is room for better results makes the continuous disciplined work of adjusting my anti-inflammatory treatment to the situation and the lab tests every three months well worth the effort.
The anti-inflammatory treatment is giving us (in conjunction with high Flow O2 abortive) a Substantial weapon to battle our common malady with substantial results (over 70%) and that is more than we achieve (statistically) with most of the standards of care treatments, without any (seemingly) adverse side effects, or any unwelcome legal issues.
The cost of this regimen is negligible in comparison to any of the current standard of care meds. It is affordable to (almost) any person, even without health insurance. My cost is just under 50 cents (US $) a day (and I buy the supplements over the internet and they are flown from the USA to Switzerland via Fed Ex or DHL). It is the cost (more or less) of one cigarette (in Switzerland), and way less than the cost of a beer in Switzerland !!!
When it's all said and done,
I know I still suffer from cluster headache !!!
However, I'm no longer intractable, and that by itself gives me a whole new outlook on life.
The anti-inflammatory regimen gives me a confident level of control in preventing my CH and the few that do leak through are easily controlled with oxygen therapy at flow rates that support hyperventilation.
Bottom line: I enjoy a quality of life that lets me function effectively at work, at home with my family, and while doing things I enjoy like skiing with my sons and flying a sail plane over the Alps or Paragliding with my older son.
If you haven't already tried it, I urge as many of you to give this alternative a try, and even if you have tried it for one or two weeks and given up… try it again… It can take time for it to be effective, for some of us, particularly the chronic types. In some cases like mine, it can take several weeks, but the wait is worth it.
It also takes a disciplined approach with lab tests and patience. There are no apparent risks and it is statistically a very cost effective preventative you can live with for as long as it takes… or longer!
Michael
201209
(copy - Pete)