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Brad
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I have suffered for 25 years and never actually met anyone with exactly the same condition (and I know alot of people), so This is awesome that we have a hub to meet and socialize.  I am deeply considering surgery if any one has information about about the pro's and con's.  I am currently working on becoming a physical therapist with my first degree in personal training but I am making it my life's work to help end our suffering. Thank you and I certainly look forward to getting to know you all.

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I heard of a great local neurologist in my area that has had rave reviews.  I know it sounds like the easy way out but I am exhausted an just want them gone for good.  I am open for busting, for sure, because I fear my children will developed this horrific condition.  I can remember being only eight years old and sadly wondering what was wrong with me.  Now I'm 33 and still anxiously awaiting a cure. I am a somewhat healthy and strong young man but these so called headaches break me down to nearly nothing and I'm sick of it.  I am glad to have found this sight. You all ROCK!!!

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Hi Brad,

Good to see you here - now your hangin' out with folks whom you have a very prominent thing in common with!

I'm sure lots of us here have thought of surgery due to the severity of the condition, but, for good and happy :) reasons, 99.9% of us have dropped the idea.

2 main reasons (from my perspective at least):

1) There is a very good chance of major relief to be found through the *busting* that Tingeling mentioned, and other non toxic treatments. IMO Essential reading/viewing on the subject of busting is this Newsweek article and this video talk by Bob Wold:

http://www.thedailybeast.com/newsweek/2009/10/14/the-psychedelic-solution.html

http://vimeo.com/10918637

2) Deep brain surgery is an outmoded way to go. Dr. Peter Goadsby, considered by many to be the world's foremost medical authority on CH, gave a talk I attended recently, and although in the surgical world there are now some miniature implants (in the jaw) for CH that could be considered in a pinch, newer technology is now in a testing/approval phase that will require no implant, just a remote *wand* sort of device.

Basically we're just not into the drastic surgery thing with it's low success rates here because the much less risky busting approach works quite well for most of us, and that even includes some chronics among us who've been able to go into long stretches of full remission.   8-)

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welcome, brad. as bejeeber says, a "cure" of some sort is coming pretty soon, between goadsby's work and the likely release of BOL-148 in the next year or two.  there's no way your kids are going to have to deal with what generations (centuries) of people have had to suffer.  and, as ting and jeebs say, busting will probably get you through until then.

can you tell us a little more about what you're now doing?  is oxygen helping you?  are you using meds (imitrex, verap, etc.)?

right away, you might want to consider starting the vitamin D3 approach that has helped a lot of people.  it's simple, inexpensive, and safe, and seems to provide some significant relief for many and even full relief for some.  http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1314134804

and, hey, you can look forward to next year's clusterbusters conference, where you'll get to meet a whole bunch of wonderful people who share your condition.

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I think i`m one of many or most having CH that have thought that if there was drilled a hole in my scull that would release the pressure. I am a chronic that experienced getting hit day and night every third h. Nothing gave me relief. Who would have guessed something simple as 65 RC seeds or some tiny little mushrooms would let the "pressure" out and stop the hits from coming. Who would have guessed. Not me, i didn`t even believe it would be possible but i tried cause i thought what the he.. why not just do it anyway, i tried all these chemicals doc gave me. Like you i feared i would pass this on, wich i actually did. My little daughter got it. She`s ok, it`s under control with Melatonin and Benadryl and controlled diet etc. BUT as she grows older i know she will not have to suffer like i did. I don`t think i have to explain how that feels to anyone.

In my opinion, the quickest way for you to get relief is to bust.

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Im new to the lingo, so what is busting.  I'm am in and out with errands today, so I apologize, for I had not had a lot of time to completely review this entire site.  I have 4 daughters and am in school so my time is consistently hectic.  This evening I plan to sit a check things out a bit more.  Thank for the warm greetings!

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Brad, I hope you're doing some reading. It's safe to say that every single person here has been exactly where you are now at some point. I considered every drastic measure imaginable, including surgery, steroids, you name it. Relax, read up, and do some experimentation. The solutions you'll find here are safe, effective, and inexpensive.

There is no cure, but I went from 24/7 misery to basically laughing at these things now. You'll be just fine very soon.

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Very intriguing studies going on here.  I went for years being told they were sinus and was given nearly every type med for it and nothing ever worked until 05 when I finally was diagnosed by a neurologist and was given free samples of Zolmig (because I was broke w/no insurance) through out my spell (cycle).  I finally have great inssurance but am now reallizing that Imitrex just prolongs it.  I was also put on amitriptaline , which didn't help and then on carbamazapine which seemed to make it worse at first but then they subsided.  The only drawback is it was after already being towards the end of a typical cycle.  Now 13 months later they are back.  I have a steady supply of Imitrex but still not very optimistic.  My neighbor is a doctor and is looking into an o2 tank and mask for me.  Wondering if I should have my primary put me back on the carbamazapine or not.  Im sick of pills, worrying and the emotional drain it has on me and my family.  We deserve better.  Every one of us.

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brad, maybe some of the information here about oxygen (O2), including a study reported in the Journal of the American Medical Association, will help your neighbor doctor reach a quick and helpful decision.  virtually every single person here will tell you that oxygen is an essential, probably the essential, part of their anti-CH arsenal.  http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1299901790

here's the report about busting with seeds that got us off the dime to try it: http://www.maps.org/research/sewell_2008_aha_lsa_poster.pdf

although that poster is about HBWR seeds (Hawaiian baby woodrose), most people here prefer RC (rivea corymbosa), for a variety of reasons.  RC is legal to buy and to possess; it's just unlawful to prepare and drink it.  you're in a perfect position to bust right now, not having used any meds lately.  strongly recommend you order some seeds now.  if you don't use 'em, you're out maybe $25; if you do decide to, you're ready.  plenty of places on the internet sell them, including www.iamshaman.com and www.psychoactiveherbs.com.

and i'll repeat my strong recommendation that you start the D3 regimen.

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Thank you so much for all of this wonderful advice.  I wish I would have found this site a long time ago.  I plan to earn my doctorate in Physical Therapy specializing in prosthetics, also integrative, sports and holistic medicine.  I am only 7months into about 5 years of school.  I want to give back for all of the help that I have received. 

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I've had the Occipital Nerve Ablation on both sides of the back of my head.

It made things so much worse for me. It increased cluster activity instead of decreasing it.

Busting has literally saved my life. I would be in a mental hospital or dead if I had not began busting. You can use RC seeds if you're uncomfortable with the whole 'tripping' aspect of things. It just relaxes you, and might help you sleep.

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This is great info.  I certainly want them to go away but I also have a family to look out for, so legalities is a huge issue.  But when you are in the middle of an attack you dont care how it goes away, just as long as it does.  Tough decisions!

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Brad, your tough decision about the legalities is of course yours alone to make. Psilocybin and LSD are "Schedule I" drugs, so even obtaining them is not without risk, whereas  Seeds/LSA are "Schedule III."   Since the seeds are lawful to buy and possess, as someone here once said you would have to go pretty darn far to be apprehended for preparing and drinking them in your own home -- maybe inviting a law enforcement official in to watch you doing it would be the only secure way to get arrested.

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Well put.  Either way, it is a good feeling to know their is light at the end of the tunnel after all!  I am an out going guy but this has made me feel secluded and alienate through out the majority of my life.  I am a firm believer of positive thinking and the laws of attraction and I can strongly feel it at play.  But that's just me.  Thank you!

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Aaarrgg!!  Just finished off a two hour attack. It was about an 7.  Took 2 25 mg (Puny doses) imitrex with no help, finally took a third after 2nd hr which worked.  Had to blow off a Halloween party for this crap.  So annoyed!

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Brad, I see on another thread that you've been having some good days.  So happy to see that!  Any explanations?  Doesn't seem that you've done any busting (?), but you did say you were about to start the D3.  Have you set up your oxygen yet?  (Not that O2 would explain the PF days, but it's important for you to move forward on that.)

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Took 2 25 mg (Puny doses) imitrex with no help, finally took a third after 2nd hr which worked.

That sounds like it would be the pill form of imitrex, which most of us find to be quite ineffective. Of course there's a wide consensus among those who've tried high flow 100% O2 that it is a preferable first line abortive, but if you are going to use imitrex, have you considered the partial dose injection method which is much more effective than the pills, and cuts expense and side effect risk by providing 2 or 3 aborts per injection?

Here's the link: http://www.clusterheadaches.com/imitrex.html

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Wow!  I can and can't believe it.  Only about 2 hours after I wrote in my last thread that I had no pain for 4 days one came in and it came in fast and STRONG!  I noticed your kip scale and I rated it about a 12.  Then last night I had another one just as intense for about and hour. I had about 4 headaches at about 6 and 7 at the start of this cycle which is normal for me.  But the 4 day stretch was not.  I really like the options on this site but I do choose to take a more legal route, respectively.  I am a student raising 3 of 4 daughters on just my wife's modest income.  We have decent insurance and i have a script of imitrex tabs 25 by default from our previous insurance thats was not as good for they would not allow the Zolmig nasal sprays (which worked great for me).  I am going to set up another appt with my primary and request for them again and o2.  Does anyone have legit info on carbamazapine?  We started it late in my last cycle so I am unsure if my cycle was over anyway, or if it was the med.  My neighbor hasnt got back with me yet on the o2, so ill just ask my doc.  Desperation sucks and I am wasting so much useful energy on this curse.  What does any eight year old do to deserve this torture (as I always thought as a kid).  I am anxiously awaiting the BOL release.  Thank you for your concerns.  Its nice to have somebody listen without deaf ears because they have no idea.  You are all ROCKSTARS, in my book!!!

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It is almost like it has a consciousness of it's own.  Very twisted stuff. Every time I SAY ANYTHING of feeling good or how long it's been, its like somebody is just pressing a button to prove me wrong.  It's our own personal HELL! Is it actually linked to testosterone deficiency because  I am sometimes told  may have too much (Ive been an ass a time or two [chuckle]), or is it more gene related?

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