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Please read (Read 1134 times)
RMAT
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Please read
Jan 12th, 2014 at 1:00am
 
Hello everyone,
New here and to be honest not really sure how many of you are going to receive me by the time you finish reading.  Fact is like many here I often considered that this was in fact hell if such a thing existed.  This may be a bit longer than some of the other introductions on this forum, but I feel it is important because many people make rash decisions based on lack of knowledge or just plain hatred towards society’s self-imposed sins.  And while doing so discrediting anything I have to say and more importantly listen to what I have to say. 

Just after my 13th birthday was the first time I got the pain, it came on in the middle of the night and I remember not knowing what was going on and not falling asleep till 6 hours later pumped up on some sort of pain medication.  Have many times considered what would have been had my parents not believed just how bad this pain was, and I guess it was lucky or curse for me that my Dad and his before him suffered from the same type of pain.  My parents later told me they were hopping that I would not get them like my Uncle, but that was not to be.  In my Dads case majority of his attacks were brought on by alcohol, usually that night and days after fortunately there was an easy solution don’t drink.  Unfortunately he didn’t figure that out till after he and my Mom were already married at which point my Mom all but cut his alcohol consumption to zero and this was not an easy thing cause all this was going on in Russia, where if you don’t drink with someone it’s considered a personal insult.

It would have been a great thing if all it took was for me not to drink to avoid these torture sessions.  Sadly that was not meant to be, for me it is still kind of a mystery but it usually came in waves of 1-3 month sessions sometimes when seasons changed and sometimes just randomly.  Bottom line is for most of my life now I suffered from these pains that felt like someone was trying to kill me with a dull spoon just behind my eye from the inside out and I remember on many occasions hopping that it would be some sort of tumor or something that would just kill me so the pain would end.  So back on track, I’m 13 again with my parents taking me to all sorts of American doctors because at this point we immigrated to the United States.  Every new doctor had a new medication that my parents somehow bought even though it must have been very expensive as they still are now. 
Up till the point I got in high school majority of my pain was subdued by medication like imitrex and multiple others which ranged from mass dose of aspirin to sometimes random stuff that would occasionally help turn off the pain spout.  Because of these CH I spent my entire life not drinking/smoking/any sort of illicit drug in fear that partaking would trigger an attack and no amount of pleasure was worth that.  Somewhere during this time imitrex injections were invented and became my break in case of emergency type thing cause at $130+ per injection they were an expensive luxury to partake in to stop a CH. 
I had medical insurance that would cover 2 shots a month, so I would collect them for months in advance waiting for a cycle and it kinda worked till my mid 30’s.

At this point things started to get bad the medication that once helped was not doing anything besides making me sick.  The pain would last for 3,4,5 hours 2 times a day and pills were not helping, the only thing that did help was the injections.  My new insurance company covered 6 a month so you do the math.  Yet another doctor suggested that I preemptively take my pills, and only use the injections if the pain came on at a random time.  This helped, but unfortunately in meant taking one of ½ a dozen or so different pills at least 2 times a day.  This made sure that even if I didn’t have a CH my overall state was crap constantly groggy and sick as in wanting to puke sick.  Doctors constantly warned me about taking so many pills and said it was not recommended, they really wanted me to inhale oxygen (even though they all knew I tried for a while and it did nothing) I told them that cold/hot showers have far better effect than oxygen.

By my late 30’s something new happened medication in pill form no longer had any effect, the only thing that did was the injections at which point I had something like 20-30 saved up.  Doctor said to try and just use the injections and no pills.  And by some sort of miracle it worked that particular cycle ender about only a few weeks instead of the 6 weeks plus it usually lasted.  For a while I was happy and though finally I figured out the secret, injections only.  Until a few months later, this was unusually short for my intervals.  Had injections saved up so I did just like last time injections only, this time though while they stopped the attack like before in about 10-30 min the attack would reoccur in 2 hours.  The first day I took 6 injections, all roughly 2 hours apart, day after that I realized the math didn’t add up and I would quickly be out.  So it was back to pills which did nothing it seemed this lasted for 4 months or so at which point I was out of injections and starting to run out of pills as well.  I decided the only thing to do was go cold turkey oddly enough after a few more weeks the cycle finally ended.  Expecting the worst next time I was at the end of my rope, did not want to go on living like this and didn’t know what else to do or try.

So it was cold turkey again, seemed like the medication while helping was also causing the attacks this was what a UCLA specialist determined.  The next cycle came almost when expected and after 3-4 weeks the attacks stopped which was on average also a very short cycle, and the attacks were sometimes only once a day.  It was at this point I knew this would be it the rest of my life having to want to put my head through a wall every year several months at a time.  The decision was made time to get creative and do something I long preached against to many of my friends that didn’t share my enthusiasm for a recreational drug free life.

Like clockwork the day came again and the cycle had started only this time I was ready for my next trials of testing.  It would have been smart to learn how to even smoke cannabis properly before the attack began but screw it I was in pain and willing to try anything, luckily my brother was around and he actually prepped a bong for me to smoke because I was having a hard time comprehending at the time due to the pain.  So I finally get stoned, and I remember laying there for several hours on the one hand being wasted and on the other my eyes a constant water flow from the pain in my skull.  The next morning I was not terribly impressed but I did get a good night’s sleep.  Figured might as well give it an honest test and smoked again in the morning, just 1 hit any more than that and I could not function with my level of cannabis tolerance.  A few hours later an attack started coming on and I smoked some more, like last time It still came on but it was much shorter and seemed more painful and ended with my feeling like there was some sort of pounding feeling along with the pain behind my eye.  The decision was made to smoke every day till the cycle stopped to see if there was anything in this.  Sometimes it seemed to make the pain worse but after a while I realized it was just how cannabis made me feel with the pain makes you more aware of it very hard to explain until you try it.  In what seemed like a week or so the cycle stopped smoked a few more days after that and then decided enough and that as it was already committed a criminal act and all that jazz. 

In a few months I started feeling it again the nausea, reaction to light, dull pressure behind my eye it was apparent what was coming.  So I quickly went and dug up what was left of the weed I had left over from a few months back.  Smoke all of it, got so high that I called my brother to come over cause I thought I was about to die.  Later that night after my brother calmed me down I realized my attack never materialized.  It was from that moment on that I smoked at least once a day, didn’t have to get stoned although I must admit it’s a blast to smoke more than needed.  The result has been not a single attack since, which at 42 means I have gone for 4 years without a CH.  It also means I can honestly say cannabis changed my life.  Many of you out there are thinking the same thing I did when someone mentioned evil weed in the past, but maybe modern science is wrong? 

Just when you thought I was done venting there is one last piece of what I feel is important information.  I am kinda a video game addict like most in this day and age, so I talk with many many people sometimes and one night several years ago this guy I knew mentioned that he hasn’t been around because of his debilitating migraines.  So we got to talking and I brought up what I had dealt with, at which point he said wow that sounds like my life he is 27.  He had never heard of CH I told him I too was for the majority of my life ignorant to the name and was always told I had migraines, till I once found a video of a man suffering a nightly attack on youtube which could have easily been me in that video instead.  I linked him that video after watching he realized that he was not suffering from migraines but CH as well.  Over the next few hours he described his life to me and the poor guy sounded beat, he just hit that point where the attacks began occurring multiple times a day and he was telling me about some new medication that just came out at which point I told him I was through dealing with manmade medications, and what my alternative was.

He huffed and puffed for a while about how he is very against illegal drugs and that his girlfriend was extremely against it.  And that it was not going to happen with him living in London, due to the legality of the matter.  Thing was I didn’t really push too hard cause I had my doubts that it could be that simple, maybe it’s just because I finished my sentence in hell?  So anyways we leave it at that and I wish him luck with his ordeal.  Over a year passes and I decide to reactivate my account in that game and play a bit, when I notice a mail.  It was several months old at that point but it was from the guy with the attack like mine.  He went on to tell me the story of his girlfriend leaving him and all because she said I turned him into a pot head.  It turned out that later that night after talking with me he got a hold of a friend who got a hold of another friend with the end result being he got some weed and smoked it and continued to do so till his attacks ceased.  He said it only took days, and the attacks stopped.  He went on to thank me for making him listed and how I saved his life because he has like me not suffered an attack since starting to smoke.

Far as how much to smoke or when to smoke I don’t have those answers at this point you know what I do.  What I can tell you is it won’t stop your pain like pills/injections when the attack occurs, it feels like more like preventative maintenance with the result being no more attacks.  Personally I now smoke at least once a day sometimes more not because I have to but because I have grown to love it and since just like before I still don’t drink any sort of alcohol/cigarets/other drugs, I don’t even take aspirin dealing with the normal occasional headache cause let’s face it after suffering through CH a normal headache easy to tolerate. 

Who knows if this can help any of you, but don’t you think it’s worth the try? 
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« Last Edit: Jan 12th, 2014 at 1:05am by RMAT »  
 
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Batch
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Re: Please read
Reply #1 - Jan 12th, 2014 at 3:36am
 
Rmat,

An eloquent read and an all too familiar recount of your experiences with cluster headache... You've also provided a compelling case for the use of cannabinoids to control cluster headaches...  I don't buy it.

From what I've learned over the last three years is there's a far more effective and less invasive method of cluster headache intervention used by more than 500 CH'ers than turning to a bong full of weed...

Stroll on down to your PCP and ask for a lab test for your 25-Hydroxyvitamin D, a.k.a. 25(OH)D serum concentration.  This is the metabolite of vitamin D3 that's used to measure its status. 

An even money wager... If you have this lab test, your results will come back as deficient...  i.e., less than 30 ng/mL.

The normal reference range for 25(OH)D is 30 to 100 ng/mL...  To date, CH'ers with active bouts of CH who have gone in for this lab test have averaged a 25(OH)D serum concentration of 23.4 ng/mL... in short... they were vitamin D3 Deficient.

Please don't get me wrong...  I'm more than familiar with the use of entheogens like magic "shrooms" to control cluster headache, and a study of brominated lysergic acid, i.e., non-hallucinogenic 2-bromo-lysergic acid diethylamide as preventative treatment for cluster headache. 

There is a lot we can learn from the experiences of CH'ers who chose this method of controlling their cluster headaches and I'm the last CH'er to discourage this practice of preventing the terrible pain of cluster headache.

The chemical process of "brominating" LSD removes any recreational incentive to the use this compound.  I followed the results of the clinical trials conducted by Dr. John Halpern, M.D. and continue to be fascinated with the efficacy of this modified psychedelic hallucinogen as a cluster headache preventative.

That said, I just find it difficult to rationalize the use of an entheogen like cannabis when taking healthy and nutritional alternatives is more effective with no real side effects when it comes to controlling cluster headache. 

Tell us more when you have the time...

V/R, Batch
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« Last Edit: Jan 12th, 2014 at 11:20am by Batch »  

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Re: Please read
Reply #2 - Jan 12th, 2014 at 8:19am
 
Welcome to the board, glad you found us. Take a minute and read up on the regimen Batch was talking about. I'm a 53 year old episodic sufferer since my teens. I'm 3.5 years pain free by using the regimen he speaks of. I too am not one to "pooh pooh" alternative treatments to CH. Whether it be magic mushrooms, RC seeds or even pot, which has helped several other on this board in dealing with their CH. But you owe it to yourself to try this alternative, it's cheap, legal, good for you even without CH, and has way too many people pain free to ignore it!

Follow this link to the medications section of this board and read the post 


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Bob Johnson
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Re: Please read
Reply #3 - Jan 12th, 2014 at 10:09am
 
Please! Would be a big help if you tell us where you live.
It will help us to direct you to good sources of assistance if you will tell us where you live (city & state, if U.S. or country). At the Home page: Help button-->Edit & Profile --> Location.
=====
Are you now seeing a headache specialist? If not, have you in the past and what was the diagnosis and treatments he used?

Given the length and complexity of your history I'd urge getting with a skilled doc.

LOCATING HEADACHE SPECIALIST

1. Yellow Pages phone book: look for "Headache Clinics" in the M.D. section and look under "neurologist" where some docs will list speciality areas of practice.

2.  Call your hospital/medical center. They often have an office to assist in finding a physician. You may have to ask for the social worker/patient advocate.

3. Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register; On-line screen to find a physician.

4. Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register Look for "Physician Finder" search box. They will send a list of M.D.s for your state.I suggest using this source for several reasons: first, we have read several messages from people who, even seeing neurologists, are unhappy with the quality of care and ATTITUDES they have encountered; second, the clinical director of the Jefferson (Philadelphia) Headache Clinic said, in late 1999, that upwards of 40%+ of U.S. doctors have poor training in treating headache and/or hold attitudes about headache ("hysterical female disorder") which block them from sympathetic and effective work with the patient; third, it's necessary to find a doctor who has experience, skill, and a set of attitudes which give hope of success. This is the best method I know of to find such a physician.

5. Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register NEW certification program for "Headache Medicine" by the United Council for Neurologic Subspecialties, an independent, non-profit, professional medical organization.
        Since this is a new program, the initial listing is limited and so it should be checked each time you have an interest in locating a headache doctor.





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Bob Johnson
 
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