The last year I’ve been reading this forum and although sad of course for y’all still have a feeling of ‘coming-home’.
Especially because I live at the other side of the ocean in small country the Netherlands (you know, tulips, windmills and amsterdam).
Recent months I read some items on Verapamil, Sumatriptan, Aimovig, Amgality and thought it might be time to chime in and share my story and experiences.
Clusterhead since 6 years, age 52, and although I only have one big cluster a year, my neurologist considers me to be chronic. I have built a daily medicine barrier currently using 720mg Verapamil, 3mg Sandomigran and 2.5mg Naratriptan. Because I am from the Netherlands with its beautiful dykes, the medicine barrier is like the dyke which prevents the waves from flowing over it. But in a cluster period the waves slam so hard and often, the dyke is just not high and strong enough. So the beast is always there, chronic, but in low tides constricted behind the barrier.
My cluster periods last between 4 and 6 months, starting with one attack a day a couple of times per week, to 4-11 attacks a day during the month and then slowly fading away again.
In the beginning of the cluster I use O2 to abort, but when the frequency and intensity is building I use the O2 for the small ones because the O2 cannot really abort it anymore, it will only postpone the unavoidable bigger attack lateron. I say the ‘small’ ones as I have classified my attacks in severity, small, medium, large, XL.
So for small, in my book kip until 4ish, I mentally increase my pain tolerance levels, do breathing techniques and use O2.
I read that redbull is sometimes used for its sugar and taurine, but this has an opposite effect on me.
When O2 is just not enough anymore I am entering into the medium and large attacks, kip 5-9.
Next to O2 I then use Sumatriptan as much as physically endurable, I do not restrict myself to the two injections a day prescribed, i use up to 5 a day. Normally they work within 10-15min.
I inject them in my upper thigh, not in the fatty bits but in the muscles preferably close to the big blood vessels as the incubation is much faster.
Note, I have a vast supply of Sumatriptan and can order as much as needed. This is covered by my medical insurance contrary to many other countries where this is limited or very limited (last year I used ~400 of them).
If they do not work, I run into an XL and have to ride it out, kip 10 for 2-3hrs because Sumatriptan cannot be used twice within 2 hours.
In the weeks I am at my peak, I use 60mg prednisolon daily for 5 days in addition trying to lower the number and severity. This gives some avail in those 5 days, but the effect is gone in the days I have to slowly reduce it to zero again. I read that others here are using prednisone too, my neurologist says there is a difference between prednisone and prednisolon, the last one being quicker and more effective.
Referred to by others here, I also have a feeling that using Suma so often a day, may induce CH again. Not exactly know why this is, but not using Suma is not an option for me, because my beast is so strong and will attack when not contained.
Furthermore my memory is often lacking me and have to ask my wife about simple things that happened in the past. Does anyone of you share the feeling that with every shot of Suma, a little part of the long term memory is vanishing?
I have considered the D3 regime as for many here it shows a significant improvement over the use of medicines. My situation though is that I have tried a couple times in non-cluster periods to lower my Verap, but it turned out that this had a rapid adverse effect, starting a new cycle and ending up with a higher dose than before. For example lowered from 480 to 360, the CH came back and returning to 480 was not enough to prevent the CH, I had to up it to 600 to have the same effect. This makes me very hesitant to start lowering my meds and taking the D3 as this could result in a massive cycle again. Taking the D3 and maintaining my current doses would be trivial because I would not know what is actually working or not.
Last year I tried Aimovig. My neurologist said I had to reduce my verapamil from 840 to 480 a day to be qualified to receive the Aimovig injections, two injections of 120mg per month.
As abortive I could still use the O2 or Suma and use the Sandomigran and Naratriptan. We were kinda hoping it would work also for me, because european trails showed for some clusterheads the body could ‘learn’ that the anti-CGRP fits the CGRP receptor. It blocks the binding of the CRGP to the receptor when the CGRP is released by the body (due to unknown reasons still), so the CH is not induced. For some the body learned this within a couple of weeks, or months. But not for me, after 5 months of using Aimovig the number and severity of the attacks was so high (10/day) I had to drop out and return to high doses of verapamil to make life bearable again. European neurologists believe that the Aimovig trail dose 240mg/month for CH may not be high enough.
I am thus hoping that Amgality in Europe will get the required approvals (FDA on your side of the ocean), although I read here that different dose are being applied with different outcomes. Are there any studies available yet?
When it gets the approvals here, its not said it will become available for patients in the Netherlands. We’ve seen this with Aimovig. The price of 600euro per injection is not covered by the national medical insurance system. One would say that if you can afford it privately, then just buy it, but there is a social ruling here saying that if the poor cannot have it for free under the national medical insurance system, the financially capable people cannot buy it either.
In the meantime one could opt for busting, paddo’s, coke (yes really, a fellow clusterhead went from 10 attacks a day to only one mild one if he sniffs a line of coke in the morning).
But there are two things: a long time ago I swore to myself never to take any alcohol and drugs, and, my neurologist says that compared to others in his patient group I am in the ‘premier league’ of CH suffers where meds are the only viable option. Speaking of which I have tried alternative therapies like acupuncture, which are not working for me either.
As a last resort, my neurologist is inclined to consider lithium should I really want to replace the Verap and the side effects of it (no stamina, short of breath, fatigue, dental problems – because verap is a calcium blocker, veins need calcium to be able to expand). But the side effects of lithium are far worse I understand and could prevent me from having a professional job. Also, it takes quite some time to get the correct dose of lithium, and requires regular blood controls, not to say the least internal organs do not really like a substance from the periodic system ‘LI’, it remains a heavy metal.
As for my nickname, from my teenage years my brother and I could jump higher, run faster, work harder and longer, bruises, cuts or wounds would heal much quicker than with others.
We were made from ‘cast-iron’, and the odd thing with this is that when it shows a crack it cannot be repaired, it needs to be melted and poured again in the cast.
So my current life balance is to avoid that ‘point of no repair’, disregard what it takes in terms of my current medicines and changes to my life style.
I cannot let the Beast win and have to await the next generation of medicines to become available, prescribed by MD’s and covered by the insurance, because the alternative it walking into a deserted field with a shotgun.
Maybe this sounds all too familiar, maybe there is some more information you can use.