What would you do

[Matakarap]

Hi everyone i'm lost. Episodic CH since 2014 (first 3 cycles misdiagnosed as sinusite, even going to emergency hospital supposed to have the best special service about CH in Paris, sadly common story...) to chronic from the beginning of this year (1 to 4 hits everyday or night). It hurts so much. I have 02 at home, my tank became my best friend, unfortunately more important than my wife or mother. My neuro prescribed Verapamil, but for many reasons i don't trust her, and i don't want to destroy other parts of my body with side effects, i'll think about it again if someday O2 become not efficient anymore (actually my worst nightmare). Reading your messages helped me a lot last month, i feel less lonely since i found this website. I read every single post, glad to be part of a community for the first time ever. It gaves me hope to learn about busting, or the D3 regimen (will try it next winter if still alive). Thank all of you. But.
I'm a musician, and i've to be out of home for touring a lot. July, triptans everyday, i felt my mood changing as well as it became hard to concentrate on music. Lost weight again. Annoying shadows+side effects like if i were out of my body. I completely quit drinking alcohol as i realized it was one my triggers. Gave a try on energy drinks, sometimes it helps to abort low level hits, as well as vaping CBD (no nicotine, no flavour). While touring in Japan i heard about Kampo (chinese herbal medecine) and met a doctor who seems to know CH. I felt relief after one week, still in hell but less warm, and 5 PF days (longest period since 7 months). But expensive and i finished my 6 weeks doses. Back home in August after the worst 12h plane trip in my life (last year i took 18 planes, 14 boats, and more trains, more than 110000km, so much jetlag and quick season's changes from north to south hemisphere...), really imagining how it would have been possible to jump out without risks for other passengers (couldn't find the way). Still no alcohol, old friends thinking i'm not funny or talkative anymore. I don't care, i've got O2. Then touring again, until november. Japan only this time, important recording at the end of this month. But i'm really unconfortable, as it seems impossible to have 02 out of hospital here, and i can't even carry a tank as we're moving everyday day with lots of stuff. Triptans makes me feel bad after attacks (belly hurts, thinking slow, depressed feeling, stoned like a zombie). I just feel like coming back home, stopping my work, being alone. Nobody around me seems to understand how tough it is. Social life became so difficult, i can't stand people talking to me, just answering "ahan, ahan" or trying to smile when a story seems funny to other people. Everyday losing patience and curiosity. My dreamy life (people think it's so cool to travel round the world to play music) became torture. I didn't use to make exagerated sentences with strong words but i think it's accurate now. 
Do you think i should suffer but keep on working hard, or i'd better go back home and marry my O2 tank to feel better ? What would you do ?
I'm ready to lose everything, to avoid becoming crazy.
Mata karap means broken head in bengali language, a term used to qualify people born with heavy mental troubles.
In japanese, CH is called "gunpatsu zutsu" which means repeated occurency headaches. Hard to explain reality to people ! And i'm fed up to explain again and again why i'm not that polite, or to lie about why i'm not drinking anymore, or not able to eat ramen or chinese food... Air conditioner is also a quick trigger for me, and it's everywhere here !
Yann from France, 35 yo, half-life smoker, now on a tiny bed in a ferry boat's dormitory for 6-7h to reach Miyakejima. Writing this after crying my deepest tears and trying not to shout in order to avoid waking everybody up. Just not enough force to jump into the sea and forget the pain, but the will is deeply here. Not my habit to complain, but this time i reached my psychological strength limit. Once again, what would you do ???
 

[CHfather]

Yann, this is of course very painful to read for those of us who understand what you are going through.

It's not clear to me why you're only planning to do the D3 regimen "starting next winter." It's something you should do right now, I think.

Have you looked into the GammaCore device at all -- a portable method for aborting attacks. http://gammacore.co.uk/  Mixed reviews, apparently not as effective for people with chronic CH, and quite expensive in the US (don't know about Europe), but I'd think it could be worth trying.

Also, the new preventive medicine erenumab (Aimovig) is approved in the EU, at least for migraine, and I think it can be expected to be helpful for CH, if you can get a doctor to prescribe it. As I understand it right now, you have to go to a doctor's office to get an injection every two months -- but I could be wrong about that.

CBD oil as an abortive and possible preventive?  Lots of good reviews here.  You can look it up by typing CBD into the search bar at the top right of the page. 

Do you know about splitting triptan injections so you use a lot less each time, and therefore have a lot less side effects?  https://clusterbusters.org/forums/topic/2446-extending-imitrex/

As you say, many people have found relief from busting.  I can see how it doesn't really fit your schedule right now, but of course it's something you should consider.  You would not be the first person to come here thinking it would be better to not be alive, and to find life a lot better.

 

[ThatHurtsMyHead]

Yann,

Sorry to hear of your rough time.  Have you tried magic mushrooms, LSA or LSD?  There are thousands (or likely more by now) that have found better relief from indole ring hallucinogens than anything the doctor can prescribe.  I agree with your thinking about not taking medicines that can cause more damage than help.  At low doses hallucinogens are very safe and very effective at turning our CH off.

J

[tuesnxt]

I take my sumatriptan with 500mg of naproxen (poor lady/man's Treximet cocktail) which still makes me feel a little dopey the first day but the second day I am much more coherent. Unfortunately, in the US, I only get 8 sumatriptan tablets per month so I have to meter them out carefully.

Everyone reacts a little differently to medication though.

I've also been on a topiramate cocktail for 2+ years that has lessened the severity of my headaches but the first year on topiramate was ROUGH. I was willing to try anything not to suffer through another bout of CHs though.

[CHfather]

tues' -- No oxygen?  Are you doing the D3 regimen? 

You find that the suma pills actually help you?  I ask because most people say they don't help, but you're the second person today to say that they do help them.

 

[xxx]

Hey Matakarap,

Don't wait... Start the anti-inflammatory regimen with 10,000 IU/day now.  Download the treatment protocol from the following link and take a copy to your PCP to discuss when you ask for the lab test of your serum 25(OH)D.  That way you'll both be singing from the same sheet music when you go back after 30 days on this regimen for lab tests of your serum 25(OH)D, calcium and PTH.

http://www.vitamindwiki.com/tiki-download_wiki_attachment.php?attId=7708

I'd also suggest ordering some Bio-Tech D3-50 (50,000 IU water soluble vitamin D3 capsules). 

You start this regimen with a 12-Day accelerated vitamin D3 loading schedule at 50,000 IU/day for 12 days.  After that, you can lower the vitamin D3 dose to one 50,000 IU vitamin D3 capsule every 5 days or one a week.  You'll need all the other vitamin D3 cofactors listed in the treatment protocol.

Even if you're CH pain free now, starting this regimen as soon as you've had the blood draw will help prevent the next CH cycle and... provide a huge number of health benefits...  This regimen also works well with busting...

Take care and please keep us posted.

V/R, Batch

[Matakarap]

Thanks so much for reading such a long post and for your replies. Really touched me.

I take triptans with nasal spray (imigrane 20mg/0,1ml), i guess it's not possible to split the dose. I first have tried pills but couldn't feel no effects.

I fortunately could find CBD oil, it helps to feel the shadows lighter.

I'll check gamma-core, and alternate medicines you mentioned (erenumab, naproxen, topiramate / never heard about these).

About D3 regimen, i meant "this" winter, as soon as i'll be back home. I've already downIoaded the file and talked to my doctor about it (the guy who first told me about CH). I understood that i need to ask for blood analyse before starting it, don't i ???

Busting seems very interesting too, just hard to find vitamin M or L in France and even more in Japan. I'll try to find some from Netherlands. And if anyone can help me about this in France, welcome !

I read interesting posts about welding O2 and appropriate regulator. It seems to be available here in Japan, not that convenient while touring and moving everyday, but can help.

I'll also have an acupuncture session next month, last year it could break a 10 weeks cycle.

And thanks also for deleting the previous post about holystic whatever which was obviously not serious.

Yann

[spiny]

Hey Yann!

You can go ahead and start the D3 Regimen without getting tested first if needed. Many do. It really can be a big help with the pain levels and also buy you some time to exit the scene before the 'bad' part hits.

I would definitely get that train on the track now! Then when you can get into your doctor, have the blood work done.

ATB

[Matakarap]

Thanks for your advices. Got 3 attacks this night... Fortunately, i have 2 free days, so i went to hospital with the mask i usually use at home, but the flow seemed very low although it was written 15l/mn and it was the max they could do hère !

Then i went to a drugstore, i could find fish oil (epa-dha 241,2mg), multiple vitamin&minerals, calcium (500mg) + magnesium (250mg), zinc, but no vitamine K, no boron, and no B50. I could find only "super D" (1000 IU). Should i begin and take 10 pills of it, or should i wait to order the missing things by internet ???

[Matakarap]

I'll try another drugstore today to find the missing things. Thanks for the link about D3-50000IU but they don't ship to Japan, neither other brands... So tired !!!

[ThatHurtsMyHead]

Have you tried energy drinks yet?  Most people find they work great to soften attacks.  I usually slam half a can of monster or redbull at the first sign of an attack.  It seems the oxygen works a lot better if I do that just before getting on the O2.  Also, I've never had a hard time falling back asleep at night either (only half an energy drink though).  When the post hit exhaustion kicks in I'm right asleep after the attack. 

PFW,

J

[Matakarap]

Yes i have always some with me, and drink about 2/day or night when i feel an attack coming. It helps sometimes ! 

Tried 3 drugstores/pharmacy, couldn't find D3 (only Super D 1000iu) nor the missing co-factors. Any suggestions ?! Maybe some japanese people here trying the anti-inflammatory regimen... ここで日本人いますか？？？

Yann

[FunTimes]

You can order them off of Amazon.com

I am not aware of any restrictions on them being sent to Japan 

[Matakarap]

What i found on Amazon didn't ship to Japan, specially the D3 with high IU recommended by Batch. I'll try again, but i'm fed up with this today. 

Thanks again

[FunTimes]

Dont give up that fast. If you can get the D3 at any level you will just need to take a few more pills. I was taking 10 of them at 5000 iu each. if you need to order a lower dose then that is what you will need to do. It will pay off in the long run. 

[Freud]

It may be easier if you could have some one from back home buy them and ship them. D3 is pretty common in the states, may be France (I think that’s where you said you were from). Most importantly you can’t give up. I know this shit sucks, but you will get through it. Have you ever tried a big tapered dose of steroids?  It works for some people.  There is also an occipital nerve block that helped me a lot could be easy to find some one that could do it. An SPG nerve block also helps and requires no needles. They stick long qtips in you’re nose and drip lidocaine jelly down them. There is always something to try but I draw the line at putting things in my brain. There is always MM, LSA, LSD...

Edited September 20, 2018 by Freud

[xxx]

Take 10 of the Super D 1000 IU vitamin D3 capsules a day...

[Matakarap]

Ok i started yesterday, and i'll get vitamins K2 & B50 after a couple of weeks. I have honey as a boron source. Hope i'll feel better...

I didn't try steroids as you said Freud, but it's something more added in the possibilities ! I'll try first everything not so chemical, and then i'll see some other ways if needed.

Stay well you kind people.

Yann

[Siegfried]

Hello Yann,

I am from Belgium. With regard to the vitamin situation here you should have no issues in France to find all the required vitamins. There are many types of supplements available here and most are of a good quality. The only thing here I found problematic is the boron. Not any of the multivitamins available here I have seen contain boron and separate boron supplement is only available in the Netherlands. But as you already did, you can supplement boron from other sources. You do it through honey, I do it through raisins, nuts and dried fruits. These are all good sources of boron. For all the others, A, K, B, folium acid, Mg.. there should be no issue

Also be careful with order supplements from the US. I have done it in the past from Iherb (lots of choice at cheap prices) but my package was held at the customs and the import tax I had to pay was even higher than the actual price of the supplements. They would release the package only when they received the money. After that I stop ordering from the US.

With regard to your situation. I really hope the D3 regime will work for you. If it does not, or if it does not sufficiently, you will have to take the cow with the horns and consider some serious lifestyle changes. A life of continues travel does not goes well together with chronic CH and if you take that into consideration and plan your options in advance, you should be able to deal with that.

I was in a more or less similar case myself. As a lifelong migraine patient, in 2010 I started to experience at once that my migraines turned exceptionally worse and they showed symptoms that were no more in line with the classical migraine pattern I always experienced. I was living in Singapore at that time and working as a lead software architect with lots of travel. Migraine is no piece of cake, but it has always been manageable in some way. But this new experience was no more. So I returned to Belgium, changed my role back to a normal consultant and I work now at a single customer close to my home only 4 days/week. During the bad periods, I work from home only. Only in 2017 I have been diagnosed with CH on top of the migraine I had already. All by all, it was a good decision to come back and scale down on a professional level as I feel these clusters are getting worse, not better. But fortunately the migraine part is wearing off gradually.

Hope that helps !

siegfried

 

[Siegfried]

Something else I can recommend...

Buy a bottle of high quality tumeric powder (curcumin) and black pepper. Every day you can heat up a large cup of milk (lait entier) and when it boils, add a big coffee spoon of tumeric powder and some pepper. Then drink that. It has a strong anti-inflammatory effect and its a good supplement to the D3 regimen. If you can not drink the milk, you can add a tumeric supplement but contrary to what the manufacturers of these supplements want to let us believe, the milk is far more effective. In a few days stiffness in the joins and other possible pain from inflammation will disappear.

[BostonHeadacheDoc]

Matakarap,

FOCUS. LISTEN-

O2- at least 15liters/min via face mask, do it to abort.

sumatriptan injections any dose- nasal spray not good in comparison- zolmitriptan is better if you really want to use nasal spray!

STEROIDS.  Calm down these are anti- inflammatory steroids and often stop the CH, albeit temporarily in many people. Take in the morning. 

VERAPAMIL

Yes a minority of clusterheads actually have benefit so you deserve it to yourself to try the instant release form (80mg 3 times daily going to 2X80mg 3 times a day

 

Peace,

BostonHeadacheDoc!

 

[Matakarap]

Thanks Siegfried for your message, i'll try milk+curcuma+black pepper. It's good not to feel alone with the same problems.

As it was impossible to find medical O2 at an efficient flow in Japan, i felt i was becoming crazy so i've just cancelled my tour and have taken the first plane back home (France). Kind of professional suicide, but i felt i was in real danger and mental health is the most important thing...

So i will see my doctor this monday, and will restart the D3 regimen with everything needed. 

Thanks BostonDoc, i'll try to find Zolmitriptan as you said it's better than sumatriptans, but don't forget that all countries are not USA... In Japan even vitamin D3 is almost impossible to find or to ship from abroad.

I'll need to go there again soon, so my only hope is to find welding O2, plus a kind of MM called "Hikageshibiretake". Japan is really late about treatment of CH. Hope the fact to cancel some important shows will make things move a little bit, thinking about all japanese Clusterheads... 

Yann

[Statistik01]

PYeah sorry to heard mate my family don't get it I'm sick if telling people or explaining what's going on.Not many people have seen me have them I stay at home not even when i call 000im so sick of them telling me to find a comfortable place to sit my good i said i have a CH not a migrane i can't possibly stay still and I used to call them 4 times a day for 5 months of the year I'm still very confused why people don't try those alternative underground treatments I'll find out if they work for me can anyone tell me if the  verapamil works as a preventing CH and what is this MM everyone is talking about and what is busting?? Thankyou.if we know oxygen works and triptamens and d3 and the rest why can't we rid of this bull forever I whant to start doing chemistry so I can be with the people that are making new meds?????can anyone please touch on this??we know so much but how we no nothing is a very true statement.peace to all suffering.

[Siegfried]

Hello Yann,

I use Zomig already since it came out (somewhere in the 90's) and I have never used anything else since. I find it really good but I try to avoid overuse. I am however less to speak about the generic Zolmitriptan. They say however it's exactly the same but the generic version caused me strong rebounds. I have used always the 2,5 mg for migraine but when I got cluster headaches, I need the 5 mg and now use the nasal spray as well. It works all the time ! I can still work with the pills as for me when a cluster come, I get around 10 - 12 attacks after each other, 40 min each with 1 -2 hour pain free interval. It goes on from 8 hours up to 2 days. So with a bit patience, the pills can still abort the entire batch. 

Definitely you must try the D3 and follow it exactly as Batch wants you to do it (see his informative manual). I have started it 2 months ago. OK, half August is usually the time for me to go into remission for the autumn and winter months but that does not mean headache free. Now I am already 3 full weeks with absolutely no headache sign at all and without using any O2 ! As far as I can remember, last time this happened was in February 2015. So as far as the D3 regimen concerns I am very impressed of the first results ! However it does not come cheap. I try to find the best supplements available and for me all the supplements I need cost on average around 100 € a month. But up to now, it's worth every cent !

As for the O2, I recommend the Optimask. Its very good ! I am currently looking into the demand valve but that has some challenges. The oxygen bottles delivered here are already with a regulator integrated that goes only up to 15 l... impossible to bypass. I will try to figure out if they can deliver also bottles with a fitting needed for a demand valve.

All the best !

siegfried

 

[ThatHurtsMyHead]

BostonHeadacheDoc Rocks!!!

J