Will next year be my last?

[MoxieGirl]

Hi Everyone,

I've had clusters for 5 years now (along with daily chronic headaches, which I have about 5 days out of 7). I've also had migraines all my life (run in the family) but they have gotten considerably worse since the clusters started.

When my clusters started, they were episodic with a month or two gap, but this year they turned chronic, and I have them on averave every three days, my longest break being about 12 days. I get 1-3 attacks when they hit, sometimes up to 5. The problem with my attacks is that they last, on average, 10-15 minutes, sometimes 30 minutes. So normal aboratives don't have time to work.

I've been on Topiramate (Topamax) for over a year now (and yes, I tried everything else before going to T), but will be free of it in a couple of weeks. I tolerated it well, but it would stop working ever few months, and I had to keep increasing the dose.

I'm getting ready to try the Vitamin D3 regimen, but that, and the LSD/shrooms mentioned on this site, are my last hope. The cluster I had fifteen minutes ago was the 220th I've had this year. I can't do another year like this one. I'm single, and it is too much on my own. I have to find a solution, or else.

I have a friend getting me some mushroom seeds. And I'm beginning my research of this site.

I'm sure you've all heard this before. But you are my last hope.

Renée

[Pixie-elf]

Hon, I thought this year was going to be my last before I tried the RC seeds.

You can get those in the mail, now, and dose with them, while waiting for mushrooms to grow. There's hope.

I'm a chronic of 3 and a half years now, and this has helped me manage things. I literally had no options when I came here, except this. It has saved my life. I would be locked away in a mental hospital, or dead, if it was not for Cluster Busters.

You can pull through this. We're here for you and we will help you!

Mystina

[MoxieGirl]

Thanks Mystina,

I've read a thread about the RC seeds. And they look promising. I'll google them and see about getting some in the UK. But I might also have a good mushroom source, and not sure if I'm going to have to grow my own initially. Although, for the long-term will want too.

A lot of people talk positively about the Vitamin D3 regimen too, but it doesn't work for everyone, about 78% at the moment. Although my initial tests have been positive. I don't want to be popping a handful of pills every day. And in my experience, missing one dose, and the demon returned with a vengence and it took days rebuild things back up.

Anyway. Thank you for the hope. Will just have to wait and see.

xx Renée

[MoxieGirl]

Hey Mystina, and everyone,

I'm just about to order some RC seeds. I found a thread up above with a link to a site in the UK. A question or two.

It seems, from what I'm picking up, that with the shrooms, it is a couple times a year thing. But how often do you have to do the RC seeds? I imagine it must vary person to person?

Also, I see mentioned wine helps with the taste. Does that mean mix the water/seeds directly in with the wine and drink?

I'm still reading. Lots to take in.

Thanks. Renée

[Lieutenant2]

Save your first message on this thread, you will come back and laugh at it sometime soon.

You're doing the right thing by taking matters into your own hands. Doctors aren't going to help you. It's not their fault. They just can't.

There are a bunch of things to try here, including the D3 regimen, licorice tincture, etc. However, my advice to you is: Get those RC seeds, crush up 50 of them, soak them in cold mint tea for a few hours, and chug it down. It's really that simple. You'll have a few aftershocks, things will seem strange for a day, and the CH will have changed.

Make sure you're "clean" for at least a few days, I think it does make a difference. And don't forget, there is plenty of help here!

[Guest]

It seems, from what I'm picking up, that with the shrooms, it is a couple times a year thing. But how often do you have to do the RC seeds? I imagine it must vary person to person?

Also, I see mentioned wine helps with the taste. Does that mean mix the water/seeds directly in with the wine and drink? 

personally i wouldnt use wine, alcohol is a damn sure trigger for most, cold water extraction with lemon or lime for rcs works just fine

a few times a year? maybe.... 20 times? maybe... once a year? possible.... we cant give you a direct answer to that, thats something you will answer on your own in time

A lot of people talk positively about the Vitamin D3 regimen too, but it doesn't work for everyone, about 78% at the moment. Although my initial tests have been positive. I don't want to be popping a handful of pills every day. And in my experience, missing one dose, and the demon returned with a vengence and it took days rebuild things back up.

sounds like my trials of verapamil, miss a dose by 30 mins and your screwed for a few days

when you  get to your first dose, and you experience what a difference it makes and how much better you feel, and if your using o2, i can almost guarantee it will be more effective and work much faster, your gonna feel empowered and see your life in a new light, there may be down times where its tough and things seem like they are not working, if you came this far and are considering these methods, your obviously not a quitter, cuz if you were you wouldnt be here

just remember they do stop, wether its a year or 5 days, those times will be beautiful and they will be enough motivation to keep u going no matter what happens, believe me i have been there and unwillingly revisit often,

if i can fight off my attacks (2-6 everyday for the last 18months) i have taken probably more than 50 doses, i have AVN in both my hips from steroids that were given to me to stop these headaches, need both hips replaced, lost my job, on SSD, im 25 years old, i still wake up everymorning with the thought im gonna win, sure i get down sometimes but the thought of beating these headaches on your own is beyond empowering, and when you finally get to dosing, these feelings of "i want out" will disappear

AO

[MoxieGirl]

Thank you Lt and AO.

Your words mean a lot to me, and I'm looking forward not only looking back at this post and laughing, but being around long enough to help others.

I've known about Clusterbusters for awhile now, but always considered the options here very extreme. But, after the very extreme year I've had, they now seem quite appropriate. Well, life safing actually.

Alcohol isn't a trigger for me. In fact, it is a last resort abortive for my migraines when all my triptans fail. But I like the mint tea idea better. Or lemon and lime. Will try both.

I won't be off Topirmate for a couple more weeks, then need a few days to detox. But am now really looking forward to giving this a try. Have been reading everything on the site I can find, was up till nearly midnight last night reading all the pages.

Hugs Renée

[Brew]

I've known about Clusterbusters for awhile now, but always considered the options here very extreme. But, after the very extreme year I've had, they now seem quite appropriate. Well, life safing actually.

Bingo. Once you start to experience a hit-free life, taking meds every few weeks or months with NO side effects (other than the mild euphoria you experience for a few hours while busting), you'll really start to see the depth of truth in your statement.

[Bonkers]

Cool avatar, Renee. I'm guessing "Suffering Fairy." And, welcome to ClusterBusters. I've come to believe that the "shotgun" approach is the best bet for newcomers. While reading everything you can on the site, start doing everything that looks promising.

Most importantly, high-volume oxygen hyperventilation through a non-rebreather mask - it works better than anything else, that anybody's come up with, that's safe for you to abort your CH attacks (the "oxygen page" inside the gray "menu" button on the left side of this page will get you there). The D3 regimen as outlined by CHfather (http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1314134804) is helping many and, like oxygen hyperventilation, won't hurt if it doesn't help. RC seeds are all many people have needed to bust their CH's and should be tried before any of the other psychedelics.

The above remedies are all safe and perfectly legal. Give 'em a try before anything else. I'll bet you'll be far more than pleasantly surprised. Good luck!

Ron

[MoxieGirl]

Hi Ron,

Thank you for the advice. Yep, D3 is my first stop, and RC seeds. I've experimented a little with D3 already, and have pretty strong hopes for it, but am not going to put all my hopes in one basket. I have also arranged to get some shroom spores. So, planning ahead too.

You know, I've never properly tried pure oxygen. Not from a tank and all that. I did get a canister once, and tried that a few times, I just got really light headed and felt sick and dizzy.

But, my clusters are a slightly different breed than most. They are at the shorter end of the spectrum, and I wonder how long it takes for O2 to have an effect? Mine typically last 10-15 minutes. Also, I live on my own, and I know doctors are really, really hesitant to give O2 tanks to people unless there is someone else there to turn them off from time to time. So I've not even broached the subject with my doc.

I have a very unorthodox abortive I sometimes use, that is usually very, and instantly, effective. Although I haven't tried it for awhile. Probably should get it back out as my clusters are getting worse again. But it is the only thing I've ever found that works for me, and I'm probably one of the few people in the world crazy enough to do this. And it may only work because my clusters are so short. I don't know.

Thanks again, Renée

[Bonkers]

And this very unorthodox yet instantly effective abortive is what, exactly?

[MoxieGirl]

And this very unorthodox yet instantly effective abortive is what, exactly?

Um.. Yeah, I knew I was being silly even mentioning it on a site like this one. But, I think even for you lot, you will think I'm pretty extreme and back away from me a few paces.

The brain can only process one pain source at a time. The old saying, if your finger hurts, smash your toe. There is some truth to that. Although, I'm not that crude.

If you pinch a part of your skin, to create a fold. Someplace on the arm, or leg perhaps, where you can get some soft fleshy bit. Then, take a hypodermic needle and push it through the fold, so it goes in one side and out the other. When you release the skin, the needle should lay flat against the body. The technical term for this is 'needle play', although you may not consider it play.

It produces a very sharp and intense pain, while releasing a significant amount of endorphins in the brain. It doesn't always work, and it requires that I'm able to be in control of my body, which I'm not always. So it depends on the severity of the cluster. But when it does, it provides an intense enough distraction that the brain forgets the cluster.

But, like I say, it may be only because I have short clusters. Someone with very long ones, it may not work. Or, it may generate enough endorphins and would work. I don't know. I've been doing needle play a long time, and have trained my body for it to trigger endorphins. No, you probably don't want to know.

I actually tried it a few minutes ago for my third cluster attack of the day, and had moderate success. But, it has been months since I've had the needels out, so am out of practice. It's something that takes practice, skill and a lot of knowing what you are doing. I wouldn't try it without seeing it done and being shown the safety aspects and risks.

OK, Yes, I'm now officially a werido.

[Bonkers]

Everybody's weird, Renee. My mom used to say: "Everyone's a little queer, save me and thee. And sometimes I'm not so sure about thee." I think you'll find that you fit in here pretty well.

You're not the 1st CH'er I've heard of that uses distractive pain when they get hit. Just the 1st time I've heard of 'needle play.'

Whatever works, dude.

Ron

[MoxieGirl]

Cool, thanks Ron.  :

[Pixie-elf]

Sounds like the head-banging a lot of us do.

Except with that, for me, it's a compulsion. The pain gets too severe and I can't control myself and head-banging starts. Haven't done it in a good long while though. I think a doctor over on CH.com explained it as us trying to interrupt the pain signal.

I'm pretty sure my body is too fecked up to release endorphin's properly, and I'd be way more likely to bleed all the feck over if I tried using a needle. 

Do they sell Monster, or Jolt in the UK? If so, get you a can of that. You could try red bull as an energy drink but I think the stuff tastes like donkey piss. (Or what I imagine donkey piss would taste like...)

I'm pretty sure oxygen would help even if your hits are only 15 minutes long sometimes. In most cases it does.

Mystina

[MoxieGirl]

I've not heard of Monster except for seeing it mentioned on here. Jolt I think I've seen, and Red Bull they have, but I've not actually tried it for clusters. Funny though, I've seen it mentioned often enough.

Ponder.. ponder... ponder... or have I? I think I may have, back in the early days, but worth another go. Although, maybe it wasn't Red Bull. Don't remember, so shall try again. Will also talk to my doc about Oxygen. See if I can get a small tank.

Thanks xx

[Pixie-elf]

If Red Bull is all y'all have for energy drinks you could always try it. The caffeine and taurine are supposed to help immensely. I tried both in pill form and it just didn't work as well as the energy drinks did.

[Brew]

You need one that has as much caffeine as a strong cup of coffee (80-120mg) and 1000mg of taurine. Slam it at the first sign of onset.

ETA: Pure oxygen at 25 liters per minute through a non-rebreather apparatus will abort an attack for me in 4-5 minutes. But you MUST get on it right away.

[Bonkers]

Does it sound like a lot of us are advising you to get an oxygen set-up? I hope so, 'cause we are. For virtually everyone here, the 1st time they got themselves hooked up to a proper oxygen delivery system, they wondered why they waited so long. High-volume oxygen hyperventilation is the very first thing that every Clusterhead should try. Everyone agree?

[Bejeeber]

High-volume oxygen hyperventilation is the very first thing that every Clusterhead should try. Everyone agree?

Agreed. I see no reason to let up on this line of hounding.  ;D

Everybody's weird, Renee. My mom used to say: "Everyone's a little queer, save me and thee. And sometimes I'm not so sure about thee." I think you'll find that you fit in here pretty well.

What Ron said. 

[ThatHurtsMyHead]

my 2c = O2 + Fungus

Any instruction on how to do the needles?  I have needle phobia (more or less).  The last two tooth fillings I had done, I did without anestetic because I couldn't stand the thought of a needle getting jammed into my jaw.  That said I'm sure the needle trick is much better than a 9mm to the temple if one was in that dark place...

(BTW: I'm still PF since my last dose in July/Aug!!!)  Thank you fungus and CB!!!!

Jeff

[MoxieGirl]

Hi Jeff,

Yes, I gave step-by-step up above. But if you have needle phobia, you won't like it. It hurts worse coming out the other side than going in. The needle pierces the skin twice, and then lays flat against the body.

I didn't like needles either, years ago. TBH Not sure when I got over it, perhaps in the Air Force. They jab you often enough. Then I learned how needle play really kicks off the endorphins, and I am a bit of an endorphins junky. But, you have to be safe, very safe! Not something you can just buy some needles and do!

It's also not something I would really advice if you have other options. I don't know if it would work for many people, and I'm not promoting it as an abortive. It is something weird that I do, that sometimes works. That is all.

But, I also do my own body piercings. And people think that is weird. So go figure.

Renée

[spiny]

Hi Renee,

I'm new here too. These are the greatest group of people to talk to when everything else sucks or is wonderful. They share your joy and pain.

I do understand your 'needle play' and perhaps you have tried cuts too. Then there is the 'hook suspension' route.

My daughter has tried them all. She has had severe scoliosis since she was 8 and had to wear a body brace 23 hours a day. You can only guess at the mental anguish/damage of grade school/middle school with your body encased in plastic! Then, there is the pain of the brace itself.

After that she had two surgeries and will need more later. So, her life was painful in many ways. It still is to some degree. I learned about these things thru her. She preferred them to pills with side effects. I don't blame her, but it took some years for me to get used to the idea.

Yes, needles, hooks, and cuts must be properly placed to prevent permanent damage and, self piercing is tough. But those endorphins do get released.

O2 has been a savior for me. I am currently in low cycle, just coming off high. Been daily/nightly since Sept 15th. Since I listened and got my O2, I can stop the octopus in its' tracks inside of 5 minutes.

They remain on schedule tho and return at their appointed time. However, with the O2, I don't have to suffer in between. Just know that when I wake again, go straight to the O2. Sure beats destroying the headboard by bending the bars or squshing my 4 pack of Charmin for an hour in the bathroom. I have deformed a lot of toilet paper this year. :-[

Two things: I got a welder tank from the welders supply. My idiot Dr said "O2 is too expensive to prescribe" so I went the other route. Welding O2 tank (I get the 90 tank - a mid size M tank that weighs about 50lbs). Hooked it up to a 0-25 lpm regulator bought online and the non-rebreather mask bought here on the sister site. Works great. Usually 3 minutes. Then I stay on for the same # of breaths it took to get the octopus out of my head. If it comes back soon, I go back and stay on it longer.

I use the mouthpiece, not the mask. I can't stand anything on my face. It sets the trigeminal nerve off worse than it is already. Also, I rock. My version of head banging. And, if you were to fall asleep you won't suffocate, although you do have to worry about high O2 levels accumulating in the room. You can also get an 'on demand' mask. This would prevent the ambient O2 I think.

At the time I got the set-up, I was getting hit every two hours from 8:00pm to 3:00am. My what I will call my 'manic phase' would last 45 minutes to two hours.

Any time after 3:00am, I would grab a strong cup of coffee and chug it. I still have a cup every day between 2-4 pm. I can't stand energy drinks, but strong coffee is a big help.

Don't feel weird at all. The world is weird - I am fine.

Stay safe and PF.

Sherry

[MoxieGirl]

Hi Sherry,

Thank you very much for the reply. I haven't done body suspension yet, but I have some body mod friends, and plan on doing it. But not for pain relief, but cause I'm a masochist and want to explore that aspect of pain. I'm also going to be getting a brand soon too. Partly to see how much it hurts compared to a cluster, but I have other reasons too.

No, I know I'm not weird. Not for the circle of friends I travel in, and I've never thought me abnormal. Just the world abnormal and narrow minded. I have a passion for pain, and a great hatred of it. But, different kinds of pain. However, my experience on the other cluster sites, and around *cough* 'normal' people, is most people don't get it, and, oh, I'm a bit weird.

Oh well. If they knew the places I went to through good pain...

My heart goes out to your daughter. Doesn't sound like it's been a nice journey.

I want to write a book one day about pain. I read about a bug specialist once who had himself stung and bitten by every but and insect he could, and then described it in detail in a book so that other people could relate it to other insect stings. I want to do that with pan. If, on my pain scale, a cluster is a 10, and kidney stone is a 5, then getting branded is x, suspension hooks is y, child birth is z, back pain is 4, etc. Described in more detail of course. But people reading it can then relate these different pains to things they have experienced, and then, ultimately, related where cluster headaches are.

xx Renée

[basoon]

Hi Renee,

I genuinely can't imagine hearing of a single method of aborting (or reducing pain of) an attack that any ch sufferer would consider strange.

Seems appalling (though not surprising) that your doc has never provided you with oxygen as it's down as one of the first line abortive treatments in the UK (you can print this out and show it to your doctor http://www.ouchuk.org/html/new/Precriber.pdf). OUCHUK also have a completed oxygen request form (http://www.ouchuk.org/html/media_downloads.asp - it's the 4th pdf down) which you can take to your GP and get them to sign off and fax to your local oxygen provider. The fact you live on your own shouldn't be a problem, I was living on my own when I was first prescribed it.

In the the NHS you can also ask to be treated by any hospital and I'd suggest you ask to be referred to Dr Matharu's clinic at the National Neurological hospital in Queen Square London. I know it's a fair distance away from Bury but people come from all over the country and you'll be well looked after. He can also put pressure on your GP to provide you with proper treatment and get regular Ocipital Nerve Block injections which have worked well for many (including me) and you could be put forward for DHE if other methods aren't successful. It took me 7 years and various rubbish GPs to get my diagnosis of CH but I've been lucky to be at Queen Square since then.

Finally, Check your pm's.