Clusterheadaches.com Message Board


    
      
        Clusterheadaches.com Message Board
        (http://www.clusterheadaches.com/cgi-bin/yabb/YaBB.cgi)
      

        Cluster Headache Help and Support >> Cluster Headache Specific >> Gamma Knife
        
(Message started by: JohnC on Apr 17^th, 2007, 12:38am)

Title: Gamma Knife
Post by JohnC on Apr 17^th, 2007, 12:38am

Has anyone done this I just went to a neurosurgeon last week and he said he could find only one person who has done this gamma knife procedure,a guy in California had it done at Stanford about a year ago,and says his headaches were cut in half.Half sounds good to me.

Title: Re: Gamma Knife
Post by Gator on Apr 17^th, 2007, 1:28am

Quote:

Headache. 2007 Feb;47(2):298-300.

Repeat trigeminal nerve radiosurgery for refractory cluster headache fails to provide long-term pain relief.

McClelland S 3rd, Barnett GH, Neyman G, Suh JH.
Objective/Background.-Medically refractory cluster headache (MRCH) is a debilitating condition that has proven resistant to many modalities. Previous reports have indicated that radiosurgery for MRCH provides little long-term pain relief, with moderate/significant morbidity. However, there have been no reports of repeated radiosurgery in this patient population. We present our findings from the first reports of repeat radiosurgery for MRCH. Methods.-Two patients with MRCH underwent repeat gamma knife radiosurgery at our institution. Each fulfilled clinical criteria for treatment, including complete resistance to pharmacotherapy, pain primarily localized to the ophthalmic division of the trigeminal nerve, and psychological stability. Both patients previously received gamma knife radiosurgery (75 Gy) for MRCH with no morbidity, but no long-term improvement of pain relief (Patient 1 = 5 months, Patient 2 = 10 months) after treatment. For repeat radiosurgery, each patient received 75 Gy to the 100% isodose line delivered to the root entry zone of the trigeminal nerve, and was evaluated postretreatment. Pain relief was defined as: excellent (free of MRCH with minimal/no medications), good (50% reduction of MRCH severity/frequency with medications), fair (25% reduction), or poor (less than 25% reduction). Results.-Following repeat radiosurgery, long-term pain relief was poor in both patients. Neither patient sustained any immediate morbidity following radiosurgery. Patient 2 experienced right facial numbness 4 months postretreatment, while Patient 1 experienced no morbidity. Conclusion.-Repeat radiosurgery of the trigeminal nerve fails to provide long-term pain relief for MRCH. Given the reported failures of initial and repeat radiosurgery for MRCH, trigeminal nerve radiosurgery should not be offered for MRCH.

PMID: 17300376

Title: Re: Gamma Knife
Post by Gator on Apr 17^th, 2007, 1:29am

Quote:

Neurosurgery. 2006 Dec;59(6):1252-7; discussion 1257.

Trigeminal nerve radiosurgical treatment in intractable chronic cluster headache: unexpected high toxicity.

Donnet A, Tamura M, Valade D, Regis J.

Department of Neurosurgery, Hopital la Timone, Marseille, France. adonnet@AP-HM.fr

OBJECTIVE: We have previously reported short-term results of a prospective open trial designed to evaluate trigeminal nerve radiosurgical treatment in intractable chronic cluster headache (CCH). Medium- and long-term results have not yet been reported. METHODS: Ten patients presenting with a severe and drug-resistant CCH were enrolled (nine men, one woman). The radiosurgical treatment was performed according to the technique usually used for trigeminal neuralgia in our department. A single 4-mm shot was positioned at the level of the cisternal portion of the trigeminal nerve. The median distance between the center of the shot and the emergence of the nerve was 9.35 mm (range, 7.5-13.3 mm). The median of this maximum dose to the brainstem was 8.0 Gy (range, 4.0-11.1 Gy). Mean age was 49.8 years (range, 32-77 yr). Mean duration of the CCH was 9 years (range, 2-33 yr). The mean follow-up period was 36.3 months (range, 24-48 mo). RESULTS: Two patients had complete relief of CCH. One patient had a good result with evolution in an episodic form. Seven patients had no improvement. Nine patients developed a new trigeminal nerve disturbance: three developed paresthesia with no hypoesthesia and six developed hypoesthesia, including two patients with deafferentation pain. Only one patient had neither paresthesia nor hypoesthesia. CONCLUSION: We confirmed, with medium- and long-term evaluation, the high rate of toxicity and failure of the technique. The high toxicity, despite a methodology identical to the one used in trigeminal neuralgia, leads us to suspect an underlying specificity of the nerve in CCH. We do not recommend radiosurgery for treatment of intractable CCH.

PMID: 17277687

Title: Re: Gamma Knife
Post by Gator on Apr 17^th, 2007, 1:38am

Quote:

Neurosurgery. 2006 Dec;59(6):1258-62; discussion 1262-3.

Long-term results of radiosurgery for refractory cluster headache.

McClelland S 3rd, Tendulkar RD, Barnett GH, Neyman G, Suh JH.

Department of Neurosurgery, University of Minnesota Medical School, Minneapolis, Minnesota, USA.

OBJECTIVE: Medically refractory cluster headache (CH) is a debilitating condition for which few surgical modalities have proven effective. Previous reports involving short-term follow-up of CH patients have reported modest degrees of pain relief after radiosurgery of the trigeminal nerve ipsilateral to symptom onset. With the recent success of deep brain stimulation as a surgical modality for these patients, it becomes imperative for the long-term risks and benefits of radiosurgery to be more extensively delineated. To address this issue, we present our findings from the largest retrospective series of patients undergoing radiosurgery for CH with extended follow-up periods. METHODS: Between 1997 and 2001, 10 patients with CH underwent gamma knife radiosurgery at our institution. All patients fulfilled clinical criteria for treatment, including complete resistance to pharmacotherapy (usually methysergide, verapamil, and lithium), pain primarily localized to the ophthalmic division of the trigeminal nerve, and psychological stability. The mean age at radiosurgery was 40.3 years (range, 26-62 yr), and the average CH duration was 11.3 years (range, 2-21 yr). Patients received 75 Gy to the 100% isodose line delivered to the most proximal part of the trigeminal nerve where the 50% isodose line was outside the brainstem (4-mm collimator), with a mean follow-up period of 39.7 months (range, 5-88 mo). Pain relief was defined as excellent (free of CH with minimal or no medications), good (50% reduction of CH severity and frequency with medications), fair (25% reduction of CH severity and frequency with medications), or poor (less than 25% reduction of CH severity and frequency with medications). RESULTS: After radiosurgery, pain relief was poor in nine patients and fair in one patient. Six patients with poor to fair relief initially experienced excellent to good relief (range, 2 wk-2 yr after treatment) before regressing. Five patients (50%) experienced trigeminal nerve dysfunction, manifesting predominantly as facial numbness after treatment. CONCLUSION: Although some patients may experience short-term pain relief, none had relief sustainable for longer than 2 years. The results from this series indicate that radiosurgery of the trigeminal nerve does not provide long-term pain relief for medically refractory CH.

PMID: 17277688

Title: Re: Gamma Knife
Post by Gator on Apr 17^th, 2007, 1:45am

Quote:

J Neurol Neurosurg Psychiatry. 2005 Feb;76(2):218-21.

Gamma knife treatment for refractory cluster headache: prospective open trial.

Donnet A, Valade D, Regis J.

Service de Neurochirurgie, Hopital la Timone, 264 bd Saint Pierre, 13385 Marseille Cedex 05, France. adonnet@AP-HM.fr

BACKGROUND: Since the initial report of Ford et al in 1998 no further study has evaluated radiosurgery of the trigeminal nerve in chronic cluster headache (CCH). METHODS: We carried out a prospective open trial of neurosurgery and enrolled 10 patients (nine men, one woman; mean age 49.8 years, range 32-77) presenting with severe and drug resistant CCH (mean duration 9 years, range 2-33). The cisternal segment of the nerve was targeted with a single 4 mm collimator (80-85 Gy max). RESULTS: The mean follow up was 13.2 months. No improvement was observed in two patients and three patients had no further attacks. Three patients showed dramatic improvement with a few attacks per month or very few attacks over the last six months. Two patients were pain free for only one and two weeks and their headaches recurred with the same severity as before. Three patients developed paraesthesia with no hypoaesthesia, one developed hypoaesthesia, and one developed deafferentation pain. CONCLUSIONS: The rate and severity of trigeminal nerve injury appeared to be significantly higher than in trigeminal neuralgia, and this study does not support the positive results of the study of Ford et al. We consider the morbidity to be significant for the low rate of pain cessation, making this procedure less attractive even for the more severely affected subgroup of patients.

PMID: 15654036

You see a theme developing here?

While there are always the exceptions to the rule, most surgeries for ch are in the long run ineffective. Either the pain comes back after a while or the attacks move to the other side of the head.

Surgeons recommend surgery. That's what they do. Surgery for CH should be a last ditch effort after everything else has failed.

You should fully educate yourself on whatever treatment you and your doctor decide on (both pros and cons) so you can make an educated decision.

Title: Re: Gamma Knife
Post by BarbaraD on Apr 17^th, 2007, 8:24am

I had a stereo-tactic radio-frequency trigeminal rhizitomy back in 99 -- it didn't work. I taked to sevral people who'd had it. Only one it had worked on. I was out of options so I had it done -- it did NOT work and I am now numb on the left side. Unfortunately, NOW my headaches have switched sides.

It is a life changing decision, so think carefully before you commit to having it done. It is irreversable.

A few months after my surgery we discovered Topamax which has been my miracle drug and put me in semi remission.

Research everything before you commit.

Hugs BD

Title: Re: Gamma Knife
Post by JohnM on Apr 17^th, 2007, 8:42am

on 04/17/07 at 00:38:27, JohnC wrote:

So this guy in California had it done a year ago and his HA's were only cut in half. So it did not eradicate them? Ask him in 2 more years if he still thought it was worthwhile and I bet he says no.

I was told by my neuro surgeon 12 years ago that this sort of operation was an option, but he recommended that it was one I did not take. It is very risky. Facial Paralysis is probably considered the least risk. I suspect death might be the biggest risk.

Don't do it!

John

Title: Re: Gamma Knife
Post by JohnC on Apr 17^th, 2007, 12:53pm

I do know about all the risks and low success rate,but almost everyone here has something that helps them,the only thing that really helps is prednosone in very heavy doses and you can' stay on that shit to long either.Hell I had to beg him to give it to me again but it's really the only thing that helps and it don't even work that great but it's the best relief I found yet.So I am strongley considering this procedure.I think short term for me right now is a good thing,I have not slept in 6 years and I'm losing my mind,shit I surprise myself that I'm still breathing.Thanks for your comments

Title: Re: Gamma Knife
Post by E-Double on Apr 17^th, 2007, 12:57pm

on 04/17/07 at 12:53:01, JohnC wrote:

Honestly,
What have you done?
Please share.
There are many here who are chronic as it appears you are as you suggest having not slept in 6 yrs.
There are several who have had surgery and look back wishing they had not.
If we know what you have tried and how then maybe we can help.
We are not doctors though there may be a few here but we all feel your pain.
In addition there are plenty of people who have tried and failed with so many different treatments only to try again and be successful. There are also some "alternative" treatments that are helping slews of people that one might consider prior to surgery.

Good luck and please share your experiences.

Eric

Title: Re: Gamma Knife
Post by Guiseppi on Apr 17^th, 2007, 1:03pm

Your frustration come through loud and clear, Chronic for six years who can blame you! Do let us know what you've tried and what has or hasn't helped you, maybe we can steer you in a direction that'll provide you with some relief.

If you go the surgucal route I do wish you the best of luck. The one constant about this condition is it seems no two people react the same to anything. You will hear a lot of strong opinions on both sides of this issue. A strongly worded opinion doesn't necasarily mean it's the right one for you!! When all is said and done, our treatment decisions are our own. Wishing you peace and some relief no matter which route you choose. keep us updated please.

Guiseppi

Title: Re: Gamma Knife
Post by JohnC on Apr 17^th, 2007, 6:09pm

Hi Everybody

Please don't get me wrong I appreciate everybody's concern
I really do but I really have tried everything out there my neurologist is one of the best in the country,and he's a great and compassionate man I respect him very much he worked at Diamond and Cleveland headache clinics,he's even saying that I am running out of options and trust me he is totally against me doing the gamma knife but he understands why.I am at the end of my rope,I'm awake two,three days at a time and when I do sleep it's in 10,20,30, minute increments for a total of about 1 1/2 to 2 hours a day.I never tell people even my Mom when they ask how have I been sleeping who in the hell would believe me?I certainly would'nt if someone told me they have'nt slept in 3 days, it sounds ridiculous.I am new to this site and the internet but am not to these f n clusters.I

Title: Re: Gamma Knife
Post by UN solved on Apr 17^th, 2007, 6:33pm

Just when you thought you tried everything ... there are 10 more options to try. Don't give up, keep looking.

Have you tried ...
Lithium, Verapamil, Topamax, sansert, Depakote, DHE, ...etc

What about ...
Occipital nerve blocks ( just because one doesn't work, the next one may help)
ONSI
RFG
Facet blocks
sphenopalatine blocks

You mentioned that your doc used to work for (or with) Diamond HA Clinic .... Did you already try Histamine Desensitization ? ( this may also fail once and work great the next time ! )

What about the alternatives`like ...
Mushrooms, LSA, RC Seeds ?

There's gotta be something you haven't tried yet. Try them all before you go to surgery ...

Goodluck

UNsolved

Title: Re: Gamma Knife
Post by JohnC on Apr 17^th, 2007, 8:09pm

Well I guess maybe not everything what the hell kind of mushrooms? and I never heard of lsa or those seeds so inform me.Yes I have tried all those medications you mentioned and about a thousand more.I was in the Diamond clinic for 10 days and did the histamene,on my third or fourth day there with no sleep they gave me a shot of some heavy shit that knocked me for a loop,I was higher than a kite and got kind of paranoid,once that feeling wore off I slept like a baby for 6 hours and did'nt feel no pain for 12 hours,but I did'nt like the way it made me feel so I would'nt take it again.I had those nerve block shots twice.

Title: Re: Gamma Knife
Post by E-Double on Apr 17^th, 2007, 9:15pm

www.clusterbusters.com

Title: Re: Gamma Knife
Post by JohnC on Apr 17^th, 2007, 9:32pm

No thanks, I won't take any of that shit

Title: Re: Gamma Knife
Post by E-Double on Apr 17^th, 2007, 9:43pm

Dude,

We wish you well on whatever it is that you do to find relief.

I guarantee you that there is 1 maybe 2 peoiple out of the thousands here who would actually advocate brain surgery regardless of how bad things are.

I am a chronic (3 yrs going strong) after being episodic for over 10.

I am currently med free and I do what I need to do.
These days I do not sleep well either and am pretty much exhausted in between hits.

We all have it, it's just what we do to find relief and how we cope that may be different

As far as the "shit" that you won't take any of, atleast that is being studied by Harvard Med.

Good luck and PF wishes!!

E

Title: Re: Gamma Knife
Post by JohnC on Apr 17^th, 2007, 11:47pm

Well maybe I'm not as smart as I think I am but I'm not going to take anything illegal,I don't care where their studying about it.It's illegal, besides that I have random drug test at work and beside that I'm fresh out of a dope dealer.I appreciate any and all advice but I never heard of anyone taking lsd for their clusters until now,is it common?I try to be careful as well as educated on any meds I take.

Title: Re: Gamma Knife
Post by Gator on Apr 17^th, 2007, 11:51pm

on 04/17/07 at 21:32:28, JohnC wrote:

No thanks, I won't take any of that shit

Now that was just plain fucking rude and disrespectful to people who have worked for years and risked their very freedom to research and develop a treatment plan using those substances. There are tons of people here that take "that shit" with great success. There are those for whom, after all the failed CH meds and more, "that shit" is the only thing that ever worked for them.

Did you even read the information on the website or did you see shrooms and pass judgment immediately?

I'm chronic and no preventative med has worked for me, either. I get hit about 5 times per day on a good day. I get little to no sleep on a regular basis and there are times I go days without sleep. I don't use the hallucinogenics for my own personal reasons, but I would never call them shit and I would never dis the people who do use them as a treatment for their clusters.

You do what you want to do. Personally, if it came down to hallucinogens or killing the nerves in my face with an expensive surgery that had proven largely ineffective and possibly dangerous, I'd choose the hallucinogens every time.

Since you have done all the research you care to do and your mind is made up, why did you even bother asking the question, except to stir up some "shit" of your own?

Title: Re: Gamma Knife
Post by JohnC on Apr 18^th, 2007, 12:20am

Hey Gator
I have'nt passed judgement on anyone but you do all the time.You want to take it thats your right and I'm glad if it works for you and any other sufferer,I said I won't take any illegal drugs and if you would read the whole goddamn post I said we have random drug tests where I work and even if we did'nt I most likely still would'nt try it,now I am to the point where I would try ALMOST anything but lsd is not one of them.
Thanks Dude

Title: Re: Gamma Knife
Post by nani on Apr 18^th, 2007, 12:57am

FYI... drug tests are used to detect meth, cocaine, opiates and marijuana. The tests needed to detect LSA, LSD, or psilocybin are much too expensive to be used as employment testing.
It's too bad you feel that way, John. Busting broke a 5 year chronic cycle for me. Here's the thread I posted about my progress.
http://www.clusterheadaches.com/cgi-bin/yabb/YaBB.cgi?board=meds;action=display;num=1122088913

If you're not ready, and I understand that, look at this. It's been promising so far:
http://www.clusterheadaches.com/cgi-bin/yabb/YaBB.cgi?board=meds;action=display;num=1110584362

Good luck. pf wishes, nani

Title: Re: Gamma Knife
Post by Gator on Apr 18^th, 2007, 12:59am

on 04/18/07 at 00:20:57, JohnC wrote:

Actually, dickweed, if you look at the timestamps on the posts, you'll find that I was typing my post while you were explaining about the drug testing. I have a very slow dialup connection (26.4k) and it takes several minutes for posts and replies to load.

I don't have a problem with your decision not to use the hallucinogenics. As I said, I don't use them either. What I had a problem with the rude way you dismissed the idea and yes, you did pass judgment on those who use that treatment in the post you made about the drug testing.

Why even bother asking for people's experience if your mind is already made up? Barb told you she had it and it didn't work. 4 different studies evaluating the effectiveness of the surgery were posted backing up her experience. If you already know the risks vs the rewards and you're determined to do it anyways, have a nice life.

Interesting that after only 2 days of being here, you KNOW that I pass judgment on people ALL THE TIME. Maybe you've been here before and your whole reason for being here now is to stir the pot again? How's that for a judgment?

Title: Re: Gamma Knife
Post by JohnC on Apr 18^th, 2007, 2:16am

Hey Nani
Whats kudzu i read what you told me to

Title: Re: Gamma Knife
Post by JohnC on Apr 18^th, 2007, 2:32am

Hey Gator
Your a real fucking gem huh, thats right I have been here only two days and I can see your the town cryer.Go fuck yourself you miserable prick.Don't forget I feel the fucking pain too,but I don't take it out on everyone else.The only procedures I know of are from doctors, thats why I'm here for other opinions from people like us, I was very surprised to hear about lsd for ch,do you think I'm the first person to be surprised to hear that?I doubt it.So please dude I'm not here to make enemies I already have a HUGE one I'm here to make friends listen and talk,if you don't like me thats fine then don't bother with me,I have enough bullshit in my life I don't need it here to.

Title: Re: Gamma Knife
Post by Gator on Apr 18^th, 2007, 3:32am

on 04/18/07 at 02:32:19, JohnC wrote:

[smiley=nopity.gif]

You have all the answers. People tried to help you and you shoved it back in their face. Now you want to play the victim.

Fuck off, dickweed.

Title: Re: Gamma Knife
Post by burnt-toast on Apr 18^th, 2007, 3:56am

JohnC,

All kicking and scratching aside. If your serious about finding relief...

I started this misadventure determined to remain drug free. I researched/ruled out surgical options, changed Neuros a few times and tried/tried homeopathic remedies.

I finally accepted the fact that I had to do something else. It is unfortunate, but if left untreated we're going to live miserably. Physically and mentally I was exhausted and no longer functioning normally.

Combination drug therapy can help. It took some work, a good journal and Neuro., but I finally settled in at 1200mg Lithium Carbonate, 720mg Verapamil and 9mg Melatonin daily. I've been at these levels for about 10 years. Being alert for possible side effects and routine blood/liver function tests are important. The only problem I've had is severe leg pain/swelling at Verapamil levels higher than 720mg.

Not perfect, I still get beat up, but I get enough relief/sleep to function somewhat normally again.

CH may not be considered life threatening but the physiological problems created by CH/total exhaustion shouldn't be ingored. Whatever you choose to do - choose wisely after doing your homework.

Best wishes,

Tom

Title: Re: Gamma Knife
Post by JohnM on Apr 18^th, 2007, 4:47am

John C

You say you are prepared to try anything?

Well here's what worked for me. I am an episodic CH suffer since about 1970 and Migraine sufferer since the early 60's.

I have been virtually CH free since May 2002 using my method.

I don't say it will work for everyone but it works for me so far to keep me in remission for 5 years so far.

Look up my many previous posts on the DETOX DIET and do some research on DETOX on the net.

It involves a radical change of diet and lifestyle for up to a month at a time, where you eat only fresh fruit and fresh vegetables (try them oven roasted, grilled, stir-fried, steamed) and drink only pure water - lots and lots of it.

No booze, no cigs, no meat, no coffee, no wheat, no nothing except the above.

It makes you feel very shit for the first week maybe, with a nasty toxic headache for days on end, spending plenty of time at the toilet, but then you feel so much better after the first week or so.

I follow this strict regime every 6 months for a few weeks, or whenever I start to feel "headachy" again.

No drugs, no meds for me for 5 years now!

Best of all this treatment cost nothing except for willpower and choosing the very best variety of nice fruits and veg. There are also various natural Detox aids available from health stores. Try them by all means, they may help, (even if just as a placebo to get you motivated)

If you are serious about getting rid of you CH then try this for a month to see if you works for you too. The long term affects are not going to harm you, which is more than I can say for going under the knife.

Message me if you want more details or help

John

Title: Re: Gamma Knife
Post by Yorky on Apr 18^th, 2007, 5:28am

on 04/18/07 at 02:32:19, JohnC wrote:

AN APOLIGY WOULD NOT GO, A MISS HERE

i have read the full thread 2 times

gator has only tried to help/advize

Your a real fucking gem huh, thats right I have been here only two days and I can see your the town cryer.Go fuck yourself you miserable prick

2 days, and you respond to his help

does gamma knife mean "DICK HEAD" .

dont know about implants....but you could use some

MANNERS ?.....just a thought

Title: Re: Gamma Knife
Post by Kevin_M on Apr 18^th, 2007, 5:55am

JohnC

Before dismissing the Clusterbusters method, which includes LSA seeds legally available, take a look at what you've been doing, and what you may be doing.

Quote:

I do know about all the risks and low success rate,but almost everyone here has something that helps them,the only thing that really helps is prednosone in very heavy doses and you can' stay on that shit to long either,

You will find hard evidence here of just how very dangerous this can be and the long term effects, which you seem aware of but still use despite extreme danger. This versus taking a look at Clusterbusters.

Quote:

Has anyone done this I just went to a neurosurgeon last week and he said he could find only one person who has done this gamma knife procedure, a guy in California had it done at Stanford about a year ago,and says his headaches were cut in half.Half sounds good to me.

This one person noted by your aware doctor versus the results of four studies Gator posted.
I'm sure Clusterbusters can absolutely put those odds to shame. Take a look again at whatever preconceived notions you may have had concerning their method, since it is new to you, and reassess your options with what has been proven by many, many here.

Consider also going through this gamma knife procedure and it doesn't help, or worse.

What has your oxygen setup been, flow rate, Clustermasx and all?
And also if used, what combination of verapamil and lithium?

Title: Re: Gamma Knife
Post by BarbaraD on Apr 18^th, 2007, 9:27am

John C,

In defense of Shrooms. A couple of years ago I was in FL and met up with a nice 72 year old woman who I'd met several times over the years. She was bouncy and pain free. I asked her what she was doing differently. She calmly said, "shrooms." I was shocked to say the least, but she went on to explain that she tried the shrooms and had to "dose" twice the first time and her headaches quit. After that she had to dose about every six months (once). Since she started she's been headache free.

If you'll read the site you'll see that there's a "dose" that's regulated (not the hallogenic one to get high). Most people that I've talked to on this say they don't get any feeling of ethorpia from the dose - just relief from the headaches.

Hope this cleared up some of the myths about shrooms for you. They have helped a lot of people on this site that couldn't find help from anything else.

Hugs BD

Title: Re: Gamma Knife
Post by JohnM on Apr 18^th, 2007, 10:12am

John C

I'm trying to read between the lines here on your Gamma Knife post.

I think you posted this hoping the board would give a resounding "yes go for it, take your surgeons advice" and maybe was very dissapointed to find that we very strongly don't support this particular treatment for CH and that the hope you were holding out for it has gone.

Many have claimed some success with surgery for CH here in the past only to have been found out to be lying in their claims of a cure. Gator and others have taken the time and effort to uncover some of these dissapointed liars recently for the benefit of this board's members, so don't take it too bad if you think he is a "town crier". In this case he has a right to be. He is trying to prvent you from making a very bad decision that you may regret for the rest of your life.

There are many other options to surgery - just listen to them.

And my advice - remain calm, listen and read, and stop resorting to rudeness and name calling. And that goes for you too Gator 8)

We are trying to help you here.

John

Title: Re: Gamma Knife
Post by JohnC on Apr 18^th, 2007, 12:50pm

Thanks to everyone including Gator I did read those studies he posted for me and I really appreciated it but I felt he jumped on me for no reason I guess when I called that stuff shit he got mad at me,I did'nt mean it to offend nobody, shit is just the word that popped into my head at that time I should had put stuff or something else.I just was wondering if there was anyone who had done this procedure thats the only reason I posted.Gator I'm sorry dude we can all get touchy at times living with these fn things,I guess I'm not up on all the lingo you guy's use here yet,I'll try to catch on.I guess I was just taken by surprise by the whole thing,people have recomended I try weed before and that was something that I thought was crazy too so I guess I really freaked when I saw that people were taking that stuff ,I was just kind of blindsided I guess.I know I don't have all the answers thats why I'm here,as a matter of fact I have no answers,the only thing that seems to give me any relief is heavy doses of prednosone and I know that"shit " is bad for you,I take 180mgs verapamil twice a day,I had oxygen for the first couple of years and it did'nt help I don't remember the flow rate and all that.Please accept my apology if I offended anyone that was never my intention.You to Gator I,m sorry bro,I really do appreciate those articles you posted.
Thanks Everybody

Title: Re: Gamma Knife
Post by BarbaraD on Apr 18^th, 2007, 1:44pm

180 of Verap is a very low dose. Most here don't take less than 480 before it does any good. Some mix it with Lithium (cocktail that works for several).

O2 needs to be at least 10-15 liters per minute with a non-rebreather mask (nose thingy doesn't do anything and a lower flow rate is useless). And it may not have worked in the past but is worth another try. Sometimes it doesn't work, but then will. It's a crap shoot, but it's been a godsend to a lot of us and is cheap.

Some of us have tried so many things (some stupid to say the least) that have not worked. And some of us have thought we found the answer only to find out later - it only lasted for a little while.

But this board is about sharing and hoping for an answer to our malady. Hopefully someday we'll find the cause and then we can hope for a cure. Right now we're all just hoping for some relief from the pain.

Hugs BD

Title: Re: Gamma Knife
Post by tommyD on Apr 18^th, 2007, 4:09pm

JohnC -

Welcome. Believe it or not, you’ve landed in the right place. This is such a rare diease, clusterheads often know more about it than the docs. There are folks on this board that know more about it than even the neurologists and headache specilaists.

Take some time and read the board, there are centuries, eons, of experience and knowledge here. Also check out Floridian's Cluster Book http://www.med-owl.com/clusterheadaches.

Docs can prescribe oxygen, but we clusterheads know you need 10-15 liters a minute and a clustermasx (www.clustermasx.com) for best results, and we know the best ways to save money by using welding oxygen. Few docs will have heard of treating clusters with kudzu root, or aborting attacks by chugging Red Bull or other taurine drinks.

We know marijuana isn’t much good for clusters, tho. Some say it triggers attacks for them, some say it doesn’t. But nobody says it helps, except maybe for the stress of living with this nasty disease.

And yeah, it sounds crazy, but that clusterbuster stuff really does work. Folks on the board have been reporting good results since before the turn of the century.

-tommyD

Title: Re: Gamma Knife
Post by UN solved on Apr 18^th, 2007, 4:20pm

Just when I was about to rip you for saying that to mike, you go an aplogize ! At least you did apologize though. I know this hell hole of a disease can make any of us a lil cranky ... so I'm sure we can let it go this time. You do realize that Mike was only trying to help. We don't use any of these drugs for recreational purposes. We do it to slay the inner beast. Personally .. I wouldn't give a damn if it's illegal or not - If it stopped my cluster attacks, I'd take it whenever neccessary.

Goodluck & I hope you find something that helps.

And Mike, I hope you didn't let this person get to you. You're a great asset to this place and I for one appreciate everything you do and have done for the cause. Keep up the good work ! [smiley=thumbsup.gif]

UNsolved

Title: Re: Gamma Knife
Post by Kevin_M on Apr 18^th, 2007, 5:30pm

on 04/18/07 at 12:50:34, JohnC wrote:

I take 180mgs verapamil twice a day,I had oxygen for the first couple of years and it did'nt help I don't remember the flow rate and all that.

John, I can already see that what you have previously tried has not been utililized to its potential against clusters.
Initially I was prescribed 360mg verapamil like you but asked the doc, if it didn't seem to work, how far we would go with this before deciding on something different and she said she was willing to go to 720mg first before considering other preventives, in combination or changing to another. Since then I've been able to prevent most all within that range of 360 - 720mg as hits vary throughout the year and as prescribed, needing the 720 at lengths and able to back down at times.

I'd guess that the flow rate on the oxygen wasn't 15Lps you previously tried because that you would remember, it is not common to be prescribed that from a doc or to get a setup like that. It takes an extra effort to put it together usually, it's not standard stuff. I'd be surprised if that was what you were prescribed and what you used because you mentioned using it "the first couple of years".
Oxygen at that rate in conjunction with the "specially made for clusters" Clustermasx is the excellent best and with less, many have tried oxygen and not had as good results. Retreading that ground with the above described has been very effective, as you will see so many attest in past threads.

These may help you NOT have to depend on the pred, which is very important. And there is the alternatives too.

Welcome John.

Title: Re: Gamma Knife
Post by ClusterChuck on Apr 18^th, 2007, 5:57pm

on 04/18/07 at 12:50:34, JohnC wrote:

Please accept my apology if I offended anyone that was never my intention.You to Gator I,m sorry bro,I really do appreciate those articles you posted.

It takes a big person to sincerely appologize, for their own errors.

Appology accepted. I think we have all jumped when we shouldn't have. I swear, at times, my foot spends more time in my mouth than on the floor. The only time it seems to leave my mouth, is when I have to kick my own ass. You're a good man!

I was very happy to meet and chat with you in the chat room last night, and look forward to doing it again.

Chuck

Title: Re: Gamma Knife
Post by SophiaK on Apr 18^th, 2007, 7:50pm

After having my liver screwed up and permanetly scarred from Predisone, depakote and a number of other meds that did nothing for my head pain, I researched clusterbusters.com
I dosed 5 times with shrooms. Each dosing I got less sessions of pain. I now take small amounts of indocin 3 X 25mg daily. I occassionally get 'shadows'. I was a little concerned about dosing, but just couldn't take it anymore after a year of existing in daily pain, 4 to 12 episodes a day of pain in my head so bad, I became more and more depressed. The amount of mushrooms is not a 'trip'. The dose is regulated. I can understand why people would be apprehensive in taking 'illegal' drugs I was the same. I am forever grateful to those that helped me. #299 Harvard Study
PS. It appears mushrooms don't effect the liver.

Title: Re: Gamma Knife
Post by sailpappy on Apr 18^th, 2007, 9:09pm

::) ::) Well John C,
I have ben sever chronic for 37 years and I know exactly what your talking about with the sleep patterns, mine run very similar, but you can get use to living on little sleep after time, a botched surgery never goes away, I am at the same place with the options if you read my post from today you will see what I mean, but I also know people that have had surgeries and lived to regret their decisions, some even having labotomies and still had phanthom pain! John H aka Pappy

Title: Re: Gamma Knife
Post by pieface_49 on Apr 24^th, 2007, 7:17am

Hello JohnC,
Hate to talk about surgery, but here is some recent study concerning surgery and CH. These are some newer surgical options available in infancy.
http://www.nlm.nih.gov/medlineplus/news/fullstory_46330.html

Hopefully, you will find your magic mushroom (no pun nor inference intended). I do believe if God put it on this earth, He put it here for a reason. Have never taken shrooms, LSA or seeds, but if nothing else is working, they might be worth a try (to me).

Good luck to you and we all get understandably testy at times. Ask me ;). Go head, someone tell me they never get upset or testy :o

Donnie