Little reminder guys I have SUNCT not CH.
Well my doctor decided that it might be a good idea to try electro shock therapy on me to try and break my cycle, he said that a doctor he knows has had good results on treating pain with electro shock therapy. First down side is no coverage and it could cost me $5,000 out of pocket, then I read about all the possible side effects and the treatment and it is scary to say the least. I could lose memory and not have it come back, I could have brain damage, OK I may already have that. Lol Heart attack is possible and a long list of other things so is it worth the risk? I have been suffering for 17 months straight on this cycle right now and it really is getting to me and divining me nuts but I am just not sure if it is at the point that I would be willing to take this kind of risk. I have not called this doctor yet, I know he will try and convince me it is safe and talk me into it since it is what he does and curing me would be a feather in his cap and if it went bad, well he would just not talk about it would he?
What do you guys think, has anyone considered this for CH?

5 large? And no coverage? And no relative assurance that it'll give you some relief?

I'd run in the opposite direction.

When all is said and done, it is a decision you have to make knowing and accepting all the risks involved.

Me? I'm running with Brew.

Beth

Hi BigMatt,

There is evidence that ClusterBusting is effective against SUNCT (see Psiloscribe's response to Danielle in START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE). There may be any number of reasons why you have decided against ClusterBusting, but if you haven't considered it, you may find that the risks involved are far less dangerous than those of electro-shock therapy.

Ron

bonkers wrote on Jul 1^st, 2010 at 4:25pm:

Hi BigMatt, There is evidence that ClusterBusting is effective against SUNCT (see Psiloscribe's response to Danielle in START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE). There may be any number of reasons why you have decided against ClusterBusting, but if you haven't considered it, you may find that the risks involved are far less dangerous than those of electro-shock therapy. Ron

...and a helluva lot cheaper, too.

bonkers wrote on Jul 1^st, 2010 at 4:25pm:

Hi BigMatt, There is evidence that ClusterBusting is effective against SUNCT (see Psiloscribe's response to Danielle in START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE). There may be any number of reasons why you have decided against ClusterBusting, but if you haven't considered it, you may find that the risks involved are far less dangerous than those of electro-shock therapy. Ron

I did go this rout a while back and while I did have some fun it did not make my SUNCT go away just made me not care for a little while is all. I tried the seeds and thought I was going to die on those dam things, got really sick but kept at it but like I said, it did not help me. :(

This is what CH does to us. We'd do just about anything to kill the horror.

That's a lotta loot though. I turned down an electric nerve implant for my epileptic seizures when the doctor assured me that it wasn't good enough to kill the things and driving wouldn't be an option. That and that I'd be hoarse the rest of my life made me say no.

Tread carefully

Charlie

BigMatt wrote on Jul 1^st, 2010 at 5:06pm:

I did go this rout a while back and while I did have some fun it did not make my SUNCT go away just made me not care for a little while is all. I tried the seeds and thought I was going to die on those dam things, got really sick but kept at it but like I said, it did not help me. :(

Have you considered kicking it up a notch or two? What about the seeds made you think you were going to die? Seeds are a pretty mild way of doing this kind of therapy.

Brew is running in the opposite direction, Beth is running along side of him and I am trying to keep up with the 2 of them.  No way would I let someone do this to me and pay them 5 grand on top of it.

Brew wrote on Jul 1^st, 2010 at 5:42pm:

BigMatt wrote on Jul 1st, 2010 at 5:06pm: I did go this rout a while back and while I did have some fun it did not make my SUNCT go away just made me not care for a little while is all. I tried the seeds and thought I was going to die on those dam things, got really sick but kept at it but like I said, it did not help me. :( Have you considered kicking it up a notch or two? What about the seeds made you think you were going to die? Seeds are a pretty mild way of doing this kind of therapy.

I did the Wood Rose seeds and not sure if I did something wrong but felt horrible then at the wee hours of the morning was laying on my bathroom floor sweating like I never did in my life it was just pouring out of me then got violently sick, it was scary.

RC seeds are really a better alternative, simply because the entire seed is used.  HBWR seeds need to be hulled, because the hulls very much CAN make you ill the way you state. 

Please try the RC seeds and even full blown shroom therapy if needed before you give EST another millisecond of thought.

I'm right behind Brew, Beth and Linda.  They left a smart trail.

I am running fast ahead of every one else.  I am because I had one est for schizophrenia and severe depression.  It was horrible and I will never have it done again.  It did not effect my ch.

In the immortal words of John Beebe and I quote  Don't be skeered I'm right behind ya.

                  Potter

FROM EXPERIENCE - FUCK NO

Karla wrote on Jul 1^st, 2010 at 7:57pm:

I am running fast ahead of every one else.  I am because I had one est for schizophrenia and severe depression.  It was horrible and I will never have it done again.  It did not effect my ch.

karla brings up a good point. if your severely  depressed, busting may not be the way to go.

also keep in mind. many of the meds prescribed for CH interfere with the effectiveness of busting.

-johnny- wrote on Jul 2^nd, 2010 at 2:31am:

karla brings up a good point. if your severely  depressed, busting may not be the way to go. also keep in mind. many of the meds prescribed for CH interfere with the effectiveness of busting.

I think Karla was saying that electroshock therapy (est) was not the way to go.

Redd wrote on Jul 1^st, 2010 at 7:08pm:

RC seeds are really a better alternative, simply because the entire seed is used.  HBWR seeds need to be hulled, because the hulls very much CAN make you ill the way you state.  Please try the RC seeds and even full blown shroom therapy if needed before you give EST another millisecond of thought. I'm right behind Brew, Beth and Linda.  They left a smart trail.

I tried the RC seeds first and got nothing out of them and I did husk the wood rose seeds but still got sick and I tried the shroom thing like five times to make sure and it did not help at all. I am not really depressed at least not severely and I am not on any CH meds since I have SUNCT and the CH meds do not help with SUNCT, the only medication I take is the Oxi for the pain because it does help and it keeps me functional since my pain is constant and does not go away to give me a break, I think without the pain meds I would go nuts for sure.
I am leaning towards not doing the electro shock thing it just sounds to scary and way to many possible bad side effects to deal with and my life is messed up enough with these headaches I really do not need anything new to add to the mix. Thanks for all the advice, if I get stupid and try this I will let you all know how it goes that is assuming I remember any of this.
;D

Whew!

Good move.
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Charlie ::)

Quote:

if I get stupid and try this I will let you all know how it goes

Please have someone wipe the drool from your lips and the snot from your nose before reporting back.

Its the right thing to do.

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Matt,
Although the ECT they use now is not as bad as the one shown in One flew Over The Cuckoo's nest, the results can be horrible.  Some people have no after effects and some people have permanent memory loss.  Plus, there is that possibility that one treatment may not suffice.

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Well I called and am waiting for a call back from the doctor to talk about having the electro shock treatment. It was my birthday this past Sunday and to celebrate we went to an outdoor concert on Saturday and as per my norm if I go to something really noisy the next day I pay dearly and so it was. I spent my birthday curled up in a ball on the coach in severe pain doped to the gills. On top of being in all this pain on my birthday my live in girlfriend had one of her menopause break downs and blurted out how hard it is for her to deal with my SUNCT. The past two days have not been much better but I am afraid to take days off work so I have forced myself through it and gone to work but it has not been fun. Nancy is still being supportive but I fear if these do not stop that she will reach her breaking point and I would lose her and the sad thing is, I would not blame her for leaving me not sure if I would sign on for dealing with someone with this. So here I am 22 months of pain, worrying about losing my job the woman I love and just about everything I have due to these dam headaches oh and let’s not forget my sanity shall we. I know my insurance is not going to cover this, I am just hoping the doctor will have some compassion and not just want to empty my bank account like some, my hope is to sit down with him and get his honest opinion on what the chances are on this actually helping me and breaking my cycle, if it does break it then it will be worth the money but since nothing has helped to this point and trust me I have tried just about everything I am not getting my hopes up but at this point I have to try. I am just hoping I do not have any permanent memory loss or any of the other bad side effects I have read about that are possible with this kind of treatment if I go through with it. I just do not know what else to do at this point I am just warn out and oh so tired of being doped up and needing to take pain pills just to get out of bed every friggen day.

doing nothing is better than doing bad.

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Matt,
I have looked and I've not found anything that indicates that ECT is used for SUNCT, but I did find this article.

It's easy for us to be armchair quarterbacks, simply for the fact, we are not in your shoes.  That being said, please proceed with extreme caution.

Found this too

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Well the doctor that does the electro shock thing called me last night at 8:30, sounds like a nice guy. I gave him my rundown and he seemed like he wants to help and said that there is a doctor up at UCSF that is doing some experimental stuff to treat chronic pain that may want to treat me. He said that it is a pacemaker type device that they put in your neck on the occipital nerve to control pain and that he can do some tests without surgery to see if this would work before they cut me, not sure about side effects or anything yet since I have not sat down with him. He said he is going to call my doctor today to talk to him about me and see what he thinks about this and then he will call the doctor up at UCSF to see if he if he thinks it would work for SUNCT and wants to add me to his test. My main worry is cash since none of this will probably be covered by my insurance but if this guy is running a trial there is a chance that it would be paid for and would not cost me anything so I am hoping that is the case. I am hoping to hear back from him in the next day or two and get the ball rolling on this, just hope it pans out and it helps I would hate to go through all this and have it not help at all. Hell he will probably say it won’t work for treating SUNCT anyway but I am going to keep my hopes up and pray a little that it will.

I'm a little confused here. I don't think electroshock therapy and occipital nerve stimulation via the pacemaker are the same thing. As I understand it, the occipital nerve stimulator was developed as a counterpart to the deep brain stimulus technique championed in Italy. It is also less risky, though still in trial and not approved. The results I remember reading were about as mixed as anything we try...worked for some and not for others. The pacemaker device allows you to deliver an electrical stimulation on demand at the start of an attack. It can be implanted externally for the trial period. That's what I remember about it. Let us know how things go, OK? Prayers for a pain free time. lance

I should have been clearer on this one, so originally my doctor wanted me to talk to this new doctor about having him do the electroshock thing to break my cycle and that was what he had talked to him about months back but after I read about all the side effects I decided I was not desperate enough at that time to take that kind of chance on the side effects. Fast forward to now and yes I am that desperate but when I called him he thinks the pacemaker thing may be a better way to go for what I am dealing with, who know after talking to my doctor he may switch back to the electro shock treatment who knows but either way I am just hoping we can try something new and that it has a good chance at improving my quality of life witch is in the dumper right now from this.
I will keep you posted on what transpires in the next few days and what they decide they want to try on me.

I finally got a call back from my pain doctor who I really trust and talked to me about the shrink with the shock treatment. He basically told me since we had tried everything else at this point that he really felt this was worth trying even if it is expensive, he said he thought it had a good chance of breaking my cycle. So I have started gathering all my medical records for the guy which I should have copies anyway but don’t and have emailed him saying I want to move forward with this. Now this is not as bad a treatment as I first thought and he said I can even drive myself home after so none of the loss memory or anything like that just hope it works. I talked to my girlfriend last night about it and shared my apprehension about it and I guess I am just worried about how I will feel or react if this does not work, it is kind of the last thing and I don’t have any other things no matter how crazy to try to make this go away. This could cost me $2,500 and not even help but more than the money it is the mental toll it will take that scares me if it does not work. I may not do it for a week or two since it will take five days to get my records and he wanted them first but it would be nice if it worked and I would have something so huge to be thankful for on Thanksgiving.
Wish me luck, I am fearful but hopeful at the same time.
:-/

Keep us posted.  Praying for you.

Jerry

We're pulling for Matt and good luck. Damn it would be great timing too.

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Sorry Matt......I couldn't restrain myself.  :o 8-)

Charlie

Good Luck Matt.  It's long past time for you to catch a break!

Carol

You're in my thoughts Matt!

Good Luck Matt !  I hope it works for you! 

Please let us know how it goes. 

Well I went in on Saturday and got my shock treatment for the first time. First I will say if they do not use this thing for torture I would be surprised. He first did a bunch of testing to find my pain threshold and when he went past it, well it is hard to describe the pain it caused it was like having needles deep in your brain stabbing you and I mean hundreds of needles, if it was used on me for torture I would give up anything they wanted. I will say it helped my depression a lot my mood is better than it has been in a long time, it did not break my cycle at least not yet but I do think it made my headaches a bit better or it could just be the lack of depression not sure. It did cause the headache to transfer to my right side for a day but it moved back but seems less painful and I also now get a pain under my right eye that comes and goes but at least it did not cause me to have a severe headache and that was what the doctor feared it would do. The doctor did say that using this as an ongoing treatment just is not feasible at the cost, $315 a shot no insurance, but they do have a pacemaker type device that does this after being surgically implanted, now the problem is he does not know if they make one that you can use on demand or shut off and since my SUNCT comes in cycles it would need to be shut off so he is checking into it. Not sure if I would want this option, they would have to drill holes in my skull to put the wires on my brain not a pleasant thought to say nothing of the bad haircut I would have to live through.  ;D
Well I go see my pain doctor today to talk about all this and will have to see what he thinks, I am sure he will want me to have a couple more treatments to see if this will break my cycle so I still have hopes that it will but also preparing for it not working but at least it helps my depression so it will be easier to deal with it not working on the cycle.
:D

Hang in there Matt, praying it's the break through you're hoping for. [smiley=hug.gif]

Joe

Matt, what about the side-effects since you had this done on Saturday?  Memory loss?  anything?

No memory loss or anything like that, my scalp is a bit tender and when I scratch my head it hurts a bit and like I said it made my SUNCT headache move to the opposite side but it moved back but I am still getting pain under my right eye off and on but the pain behind my left eye is noticeably better so I am a bit hopeful at this point but only time will tell here. This is all very experimental since this doctor has only tried this therapy on people with migraine headaches and it was designed to treat depression that does not respond to medication so that is the insurance companies out as far as paying any of this but if it works for me I will gladly pay it and if not, well chock it up to yet another crazy thing I have done to try and make this go away, at least it has helped my depression. To be honest here I really did not think my depression was that bad but now that it is lighter I can look back and see that it was really bad so a bit of an eye opener.