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thanks and seeking advice for a newbie


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Hi all,  I wanted to thank you all for the mental support I received from finding this site and knowing there were others out there that know what I go through.  I found this site 2 years ago during a cluster period and am only getting around to posting now.

 

I'm a 36 year old male.  I've had episodic CH for over ten years now.  Well that is as far as I can remember putting the pieces together that it was happening around once a year and for 4-8 weeks.  I do however have a memory of dealing with a really bad cluster in highschool after drinking, and at least one cluster period during college.

 

About 10 years ago I finally got over my fear of doctors and went and had my head looked at, all seemed fine and they said it was a migraine and gave me some ineffective medicine.  I dealt with it on my own from then, just waiting each headache out, pacing, rocking, you know the deal...  In 2010 I moved from Washington DC to Japan.  That spring I had another cluster period and decided to go to the doctor again with the new information I had been piecing together, about how it happened yearly for about a month or two.  The doctor told me it might be something called cluster headaches.  I had never heard of it and he gave me some more ineffective medicine so I didn't believe him.  I wasn't til the next cluster period the following year that I saw another doctor that said the same thing, this time I got some zomig and it actually worked in aborting the headaches (4 out of 5 times).  I was over the moon with joy at finding something that actually worked, but it took a while to kick in. (actually I have been crushing and snorting them and it cuts about 10 minutes off the waiting time usually)

 

Anyways I was ok with just that for a while, and during a cluster period in 2013 i found this site and found emotional relief from it.

 

Now it is 2015,  I thought I was safe for the year when May rolled around and a cluster period didn't start.  (as far as I can remember, it's always started either in fall or spring)  But just last week it started and boy is it bad.  I've had 6-10 attacks a day, and my zomig doesn't seem as effective anymore. (usually it kicks in between 20-30 minutes, but I've had quite a few this week that have lasted over an hour).  This is my first summer attack that I can remember, and it doesn't seem to be following the usual rules i've become accustomed to, such as mostly happening at night and being generally "safe" between around 10am-5pm. 

 

I just wanted some advice from you guys on what I can do from here.  It's really hard in Japan, it doesn't seem like many doctors know anything about CH,  I haven't once been offered oxygen or anything beyond an abortive.  I'm going to another doctor today to see if I can get oxygen but I'm not sure how it will go.

 

I read about the melatonin and looked for it but it wasn't carried at the two drugstores I checked out.  I wanted more information on the D3 regimen but the links posted here don't seem to take me anywhere.  I was trying to look into the legality of having seeds sent to Japan but am not finding any information on it, I don't want to get into any trouble and get deported back to the US.  Any advice?

 

Also a request for newbies like me:  I did lot of reading to try to get caught up on the valuable information from this site but it's a bit difficult.  I think I'm okay now, but I think it would be helpful for others if someone would be gracious enough to start a thread with definitions for the various CH related shorthand and abbreviations used, and also a list of treatment and possible home treatment options with information and instructional links that work all in one place.

*edit* nevermind, i didn't realize more forum topics were opened up after logging in, seems all the information is right there stickied

 

 

Thanks to you all, wishing you a pf year.

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Hello Happymeal,
Glad you found us and hope we can help.
I hope you were able to get a script for 0xygen on your last trip to the doc. I don't know how much information on treating clusters has gotten to the medical establishment in Japan. But even if it's as current as here in the US, there are still many doctors that don't they should be prescribing 02 before anything else, let alone know how to prescribe 02 properly. Stick with it until you can get it and educate as many people on it as a treatment as you can. It will help others along the way.

 

As to the other issues, we have a lot of info on the website linked above.
 

The following link leads to all the general information on treating cluster headaches with psychedelics. Please click on all the embedded links also as there is a lot of information contained in these documents.

 

https://clusterbusters.org/treatments-options-choices-and-more/psilocybin-and-lsd-in-the-treatment-of-cluster-headache/

 

You should read thru all this information before treating your clusters with any of the psychedelic options.

This is not a “take this pill and your clusters will be cured” treatment. You will also find information on these pages regarding melatonin and other things that can help.

 

 

Ordering LSA seeds is easy online. There are several sites that can be trusted and have been helping people with clusters get good product. You don’t need to mention the seeds will be used to treat clusters and if you say you will be using them for that purpose, they can’t send them to you and will cancel the order. They are not for human consumption. They know what they will be used for. The larger suppliers that have been around a while will know if they have any trouble shipping to Japan. I suppose you could do a test order for Morning Glory seeds to see if they can get to you without trouble. You can always plant them like most people.

 

BobW

 



 

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Happymeal,

 

Being in Japan might add some small challenges, but as Bob mentioned above.  O2 would be my first inquiry from your doc.  100% O2 with a non-rebreather, is the weapon of choice for the VAST majority of us with CH.  I can usually abort an attack within 5 to 10 minutes if I get on the Oxygen at the first sign an attack is coming.  Rarely does the pain go over a 3 (on scale of 1 to 10).  

 

You could order RC (Riveria Corymbosa) seeds for planting.  If they get stopped at customs then you know they're not allowed.  I doubt any harm would come from ordering (if the vendor would ship to Japan).  Actually....   :)  Tranceplants might be a great first stop.  You can email Adam there and ask if he ships RC to Japan (for planting :)).  Adam has been a great supporter of those here with CH.  He's even been known to add extra RC to orders from time to time. 

 

Here's a few more things to try in the meantime:

1)  Energy Drinks - Slam one right when you feel the attack coming on.  I keep mine room temperature so they get into my system faster.

2)  Sleep in a reclyner - This is my #1 'go to' for the night hits.  Keeping your head above the heart reduces attacks for some reason.

3)  Melatonin at bed time (It doesn't work for me, but there are lots of people that swear by it. 

4)  Food log - Log what you eat / when you eat it, and when your attacks come.  I've found over the years I can reduce my attacks by three quarters or more, just by eliminating certain foods.  My list in order of trigger importance:

 

Alcohol

Chocolate

BBQ Sauce (something in it)

Fermented Cheese (Blue, Brie etc etc)

Corn Sugar (it's in just about everything

Bleached white flour - (I can eat wheat bread ok, just not white bread or pastries).

 

Back to the O2.  Make sure you get a non-rebreather mask and 15 liter per minute (some people need more, but 15 is the sweet spot for many of us).

 

PFW,

J

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Thanks for the replies.  I wasn't able to make it to the doctor yesterday so I will have to try on Monday.  I'm really hoping to get some 02 but I don't know, doctors in Japan are weird...

 

About the seeds,  I was really trying to look into the legality of it (not of consumption, just of possession) but came up empty.  I'm really paranoid about it because i've been a teacher here for over 5 years now and don't want to lose my job over trying to get medicine...  One thing that ups my paranoia is this article:

 

http://www.japantimes.co.jp/news/2015/06/19/national/crime-legal/strict-drug-laws-put-expats-risk-execs-arrest-shows/#.VcaFDvmqqkp

 

it's about an American Toyota executive that was arrested for having oxycodone sent to her.  It was stopped at customs but she was still arrested.  It also mentions another person arrested for having ADD medication sent over from the US.   I know it's a different thing though, because the medications mentioned in the article are all expressly illegal here in Japan, and as far as the seeds... I'm not sure.

 

One article that does give me hope is this one:

 

http://www.japantimes.co.jp/news/2015/07/10/national/crime-legal/police-claim-kabukicho-raids-end-open-sale-kiken-drugs-stores-japan/#.VcaEZPmqqkp

 

Although the article is about a crackdown on quasi-legal drugs it mentions that online sales and distribution are still continuing.

 

I really want relief, but I'm still unsure if I can risk it.

 

On other issues, thanks for the other advice,  I stocked up on energy drinks, I'm trying to order some melatonin, and I'll give sleeping sitting up a try.  I really should keep a food log, I've known alcohol to be a trigger for years now.  Nothing else seems to trigger it outright, but perhaps they increase the severity of attacks.

 

On that note I had a really bad bout last night, 3-4 hours, zomig was ineffective.  I'm wondering if the vitamin D i took during the day had anything to do with it.  I bought some yesterday and only took 10,000iu to test it.

 

Also another big question I have is, could the zomig be extending the CH period and causing me to have more attacks?  It might be my imagination but I think my periods have been longer since being prescribed it.  Also this current period is hitting me hard! probably close to 10 attacks a day.  Which brings me to another important question I have, I've been going over the daily recommended amount of zomig (10mg), not by too much I don't think, I have 2.5mg tabs that I take half at a time, but when I have bad ones I take the other half 45 minutes in.  I think I'm taking anywhere from 10-15mg a day.  Should I be concerned about side effects?

 

Thanks again for all the help.

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could the zomig be extending the CH period and causing me to have more attacks?

 

 

I think it's practically undeniable that you can experience more attacks when aborting them with triptans such as zomig. It's possible to experience more attacks when aborting with O2 also, but still O2 is much healthier and preferable for all kinds of reasons.

 

Many CH'ers feel that the the CH period can be extended by triptan use, but I am personally not sure about that yet, because I know there is a common tendency for the periods to just lengthen regardless as the years/decades go by, as happened with me before triptans were even available. Fortunately for some of us, the remissions can also lengthen.  :)

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So I got back from the neurologist.  It's a no go on the O2.  They just don't prescribe it for take home use I guess, I asked like 5 times if it was impossible, and i got fuzzy answers...

 

I got 3 options from him: stay on zomig, get imigran injections, or try a preventative called lomerizine.

 

I still have a largish stock of zomig so I didn't choose that.  

 

I tried imigran tablets before and they didn't seem to work, so I assume the injection wouldn't either...? anyone know differently?

 

So i'm giving this lomerizine a shot without any real hope of it working.

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Lomerizine is a calcium channel blocker much like Verapamil. It is given for migraines according to my limited research. It may actually help as Verap. helps many Cher's. I hope it works!!!

 

The imagran injections will be much more effecive than the tablets. Over here it is called Imitrex and many take it in the injectable form. Tablets are good for migraine and the injections are used for CH. But it is one suspected of worsening attacks and length of cycle over time. In the short term it helps many. Much like the Zomig you are already taking.

 

 

That is a shame about the O2. :( It is the best and safest abortive.

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What Spiny said.

If a CH'er is going to take a triptan, slow acting imitrex tablets are known to be ineffective, whereas the fast acting injections are the powerfully effective standard.

Triptan using CH'ers in the know have widely adopted an imitrex injection extending strategy that conserves supply and lessens side effect risk:

https://clusterbusters.org/forums/topic/2446-extending-imitrex/

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Thanks for the input Spiny and bejeeber.

 

So just an update on the Lomerizine.  I'm cautiously hopeful that it's actually working.

 

I started on them on Monday night and have slowly gotten better,  Last night into the morning I only had a CH that i had to abort with zomig at 11ish pm and then 6:30am.  I actually slept through the night. Today I've only had one shadow around 2pm that went away with just a monster energy drink.  I was able to hit the gym again yesterday and today, first time in almost 3 weeks.

edit* actually having a shadow now as I write this, edit edit* it went away with an energy drink.

 

Things that are keeping me cautious though:

 

I started vitamin D on saturday, but only 10,000iu the first 3 days and 20,000 since, I haven't added in the other supplements in the regiment yet. Maybe it's working...?  Is that possible that soon?

 

I also actually started feeling a little better on Monday before I got the Lomerizine, Had a few CHs at night/morning and only shadows (alot but only some were really painful) during the day (but didn't need to abort the the daytime ones except by drinking an energy drink)

 

Also I think a big part may be that I'm taking considerably less zomig.  After reading through a lot of threads about what shadows actually are, i kind of did some testing on my own definition of them.  I found that I can have a shadow that may stick around a long time but won't rise above a 3 and can usually be aborted with just an energy drink.  If it goes up to a 4 then I take the zomig.  Before that realization I was taking the zomig at the first sign of a shadow.  So I went from taking it 6-10 times a day to around 2.

Problem with this assessment is it all happend after I started taking the Lomerizine, so it may actually be a result of taking it that I'm having these smaller less painful headaches that I'm able to deal with without using the zomig.

 

TLDR:  the Lomerizine might be working, but there are other variables that could also be at work like vitamin D, naturally coming out of the cycle, or taking less triptans.

 

Anyways, i'll try to keep you all updated.  Might be an option for some, since it has less side effects than the verapamil.

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