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Topic: Past the point of frustration (Read 535 times) |
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Ronin
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Past the point of frustration
« on: Feb 20th, 2004, 5:30pm » |
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Hello all sufferers. I’ve had CH for 14 years now. The last 9 of those years being chronic (3 CH per day for about 2 hrs each). Like the rest of you, I’ve tried a multitude of medications by themselves and in combinations (abortive and preventative), including oxygen. Nothing has worked for any length of time.
Some of the ‘highlights’ over the last five years have included weekly nerve blocks from the headache specialist, a glycerin injection in my cheek, a vascular decompression and finally a 5th cranial section from the Neurosurgeon. The last surgery has left me with an unfortunate side-effect. I now have migraines as well as CH due to the scar tissue that has formed from the first surgery. I’m at my wits end. I have to see the Neurologist this coming Tuesday in the pm and I don’t even know what to say to him anymore.
When I had my last surgery (cutting the 5th cranial nerve - 2 years ago), the Surgeon said to me that there was nothing else he could do if that didn’t work. Well, here I am 2 years later. Half of my face is numb, my eye isn’t supposed to tear anymore, and more often then not, I accidentally bite my tongue until it bleeds because I have no feeling in half of it.
I would gladly accept these side effects if the CH were gone. No hope for a normal life anymore. I’m absolutely past the point of frustration. Does anybody have any ideas on what I should say to the Neuro? I am fresh out and I can’t even explain my frustration to anyone anymore. Thanks in advance for all replies.
I will let you know what he says/tries after the appoint.
Ronin
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May those who love us , love us
For those that don't love us,
May God turn their hearts.
And if he doesn't turn their hearts,
May he turn their ankles,
So we will know them by their limping.
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t_h_b
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primary chronic since 1999
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Re: Past the point of frustration
« Reply #1 on: Feb 20th, 2004, 6:23pm » |
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Sounds like you've been through a hell of a lot.
If a a treatment like the nerve blocks doesn't work, maybe you should stop subjecting yourself to it.
Have you tried melatonin?
If not, talk to your doctor about starting with 0.5mg regular release at bedtime and increasing the dosage by 0.5mg a night until it either starts working (and then stick to the effective dose) or you reach 12mg a night without it working (then it's not going to work).
I'm chronic and 0.5mg has pretty much eliminated my headaches. Others who have found relief with melatonin use different doses.
(I notice that you're in Canada and my understanding is that melatonin is not available over the counter there. Perhaps you can get some from the US? If you need some help with that please let me know by posting here or sending a "Private Message".)
Read everything you can here through the links at the left and in the library section of the OUCH website. Maybe there are some medications or combinations that you haven't tried that will work for you. Why don't you post a little more detail about what you've tried so you can get more specific feedback about what you might try?
You can get a lot of support from the other ClusterHeads here. Welcome aboard.
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| « Last Edit: Feb 20th, 2004, 6:29pm by t_h_b » |
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No, it's not a headache--it's a Stage Ten Primary Chronic Periodic Idiopathic Trigeminovascular Cephalalgic Crisis.
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Giovanni
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Re: Past the point of frustration
« Reply #2 on: Feb 20th, 2004, 8:10pm » |
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You might investigate this also? I hope you can find relief.
John
www.clusterbusters.com
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broomhilda
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Re: Past the point of frustration
« Reply #3 on: Feb 20th, 2004, 9:11pm » |
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Hope you find relief soon Ronin, you have been through a lot! I did find out a few weeks ago that Melatonin has been approved for sale in Canada just recently so you may be able to find it 
You could check on OUCH.CA and see if they lead you to where you can purchase it!
I wish you PF really soon
Andrea
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Suck it up Princess...
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Ronin
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Re: Past the point of frustration
« Reply #4 on: Feb 20th, 2004, 10:51pm » |
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I have tried melatonin in the past, albeit quite a few years ago. My brother-in-law was able to get some from the U.S. for me. Unfortunately, it didn’t work for me then, but who knows if it will now, since having the surgeries. As for other preventative meds, I’ve tried all that I’ve read about in the posts from others. The only thing that showed any promise for me was the carbamazepine (tegretol). I started having some pretty ugly side effects with it so I had to stop taking them (I would lose motor control in a limb - arm, leg etc. without warning).
As for the mushrooms, I’m doing a bit of research on it now - thank you, John. I’ll let you know how that goes. Funny thing is, my Neuro said to me about 9 years ago (off-the-cuff) that cocaine has been known to help clusterheads. I haven’t given that a try, yet. I have enough problems right now and don’t need anymore. God forbid that it works. LOL
t_h_b, I will print out your recommendation and show the Neuro. The least it will do is give me a better sleep. As for the nerve blocks, I should’ve clarified. I got my last series of them about 5 years ago.
Broomhilda, do you know if the Melatonin has been approved in Canada OTC or by prescription only?
Thanks for all of your replies, please keep them coming. I want to have some suggestions for the Neuro to try when I see him on Tue.
Graham
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May those who love us , love us
For those that don't love us,
May God turn their hearts.
And if he doesn't turn their hearts,
May he turn their ankles,
So we will know them by their limping.
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TxBasslady
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Bass fishin' is a h00t It's the catchin' that sux
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Re: Past the point of frustration
« Reply #5 on: Feb 20th, 2004, 10:59pm » |
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Graham,
Welcome to the board.
It is possible that some of the meds you used in the past may work today. It sure can't hurt to try. Better than some the experiences you have been thru.
Glad to have you aboard.....let us know how things are going for you.
PF vibes,
Jean
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How lucky I am... to have known someone who was so hard to say goodbye too.
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t_h_b
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Re: Past the point of frustration
« Reply #6 on: Feb 20th, 2004, 11:01pm » |
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on Feb 20th, 2004, 10:51pm, Ronin wrote:
As for the mushrooms, I’m doing a bit of research on it now - thank you, John. I’ll let you know how that goes. |
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Psilocybin has helped a lot of ClusterHeads. If my current regimen stops working, that's going to be my next medication.
Graham,you might consider getting the Olesen/Goadsby CH book and reading it because you have a fairly complicated situation. It's fairly cheap on Amazon.com or Ebay. It seems to be more expensive on Amazon.ca. (If you decide to get it, go through the OUCH mall link!) It really does have some good information not available on the internet.
Good luck with the neuro and keep us posted.
Thomas
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No, it's not a headache--it's a Stage Ten Primary Chronic Periodic Idiopathic Trigeminovascular Cephalalgic Crisis.
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broomhilda
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Re: Past the point of frustration
« Reply #7 on: Feb 20th, 2004, 11:42pm » |
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Ronin, I hope you find some answers and something that works for you! Everyone here is great and the inormation is invaluable!!!!! 
In terms of melatonin, I heard through clusterheads.ca that it was approved, you may want to sign up there , post a message on the board and see who responds, they are great as far as how the medical system works here but I did hear it was approved OTC!!!!!
Good luck you should have lots for the doc on Tuesday, wishing you PF soon!( ps I hear cocaine is a huge NO NO!!!!!!!!)Best, Andrea
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Suck it up Princess...
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broomhilda
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Re: Past the point of frustration
« Reply #8 on: Feb 20th, 2004, 11:48pm » |
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Sorry, I meant clusterheadaches.ca
You can see Margi's post to all Canadians here with the link, its on this page. Good luck and hope you find relief soon!
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Suck it up Princess...
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Woobie
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Re: Past the point of frustration
« Reply #9 on: Feb 21st, 2004, 9:12am » |
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I'm sorry Stuey - I dont know what else to say -
Thinkin bout ya, tho!! SHIT!
tina
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Ronin
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Re: Past the point of frustration
« Reply #10 on: Feb 27th, 2004, 12:41pm » |
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Hello again!
I had my appointment with my Neuro on Tuesday. My wife and I talked to him for an hour (actually fired question after question to him) before we finally shut-up and waited for him to answer. I think it was more of a rant than a question session on my part. I must give him credit that he was able to listen with an open mind.
Anyway, he figures I now have episodic clusters because the ‘real’ pain (7’s and 8’s with 10’s every now and then) only started back 6 weeks ago - almost a full 2 years since my last surgery. As I’ve said on my last posts, I’ve had a chronic migraine in the background since the last surgery. The Neuro thinks that this is from the scar tissue that has built up where the surgeons went in the second time (they operated in the same spot 2 times in 2 years).
The Neuro thinks that the constant ‘ice pick’ headaches that I’ve had since the surgery (which I thought were the clusters breaking through), is actually phantom pain, which is apparently a central pain vs. peripheral pain. (???) I will have to do more research on that one.
I asked him about the procedure the Italian doctors did on those 5 clusterheads in California and he said that they seem to be on to something breaking - but of course it has only been 5 people so far. I asked him if there was any way I could get into that study group - or one in the future. He said that he would do everything he could - by writing letters to the appropriate government departments and justifying my need to get them to cover some of the costs involved - if I wanted to contact them and get accepted as a candidate. We’ll see how that one goes.
I asked him if he heard of psilocybin helping other clusterheads and he said he hasn’t, but by all means to try it and let him know if it works. He asked me how marijuana has helped - not if I tried it LOL. I told him that it helps the migraine but makes the cluster last longer (I am sorry to all you migraine sufferers out there, but I would rather have a migraine then a CH). He also mentioned that Ketamine might also be a help if I was going to go that route. I said that I was going to prepare the psilocybin myself because I didn’t want to get anything else mixed in with the mushrooms. He thought that that was a better idea than getting them off the street and giving credibility to the reason I want to try them. He also gave me a bottle of Neurontin and a box of Keppra to try. I will try these before I try the psilocybin. It’ll take at least that long to grow them anyway LOL.
Good news! I have had success with the melatonin up to this point. I am taking 4 mg about an hour before I sleep at night. The CH didn’t wake me up last night! That’s the first time in 6 weeks!!! I’m waiting to see if this is a coincidence before I get my hopes up. I’m sure that all of you can relate. My wife and I found it at a health food store beside the Neuro the day we went to see him. All other drugs are on hold! Time will tell…
Thank you to all! This board has literally saved my life - and my sanity which is a matter of debate LOL. I will stay around here and give my two cents to help others when I can.
Graham
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May those who love us , love us
For those that don't love us,
May God turn their hearts.
And if he doesn't turn their hearts,
May he turn their ankles,
So we will know them by their limping.
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EL
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Re: Past the point of frustration
« Reply #11 on: Feb 27th, 2004, 1:38pm » |
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Ronin , I feel your pain and will keep you in my prayers.. Great news about the night of sleep...Dont give up hope. Good luck buddy.
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amen
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Re: Past the point of frustration
« Reply #12 on: Feb 27th, 2004, 3:06pm » |
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PF vibes to ya. Sorry your here. but you have found the right place.
Andrea
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Tiannia
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Re: Past the point of frustration
« Reply #13 on: Feb 27th, 2004, 7:00pm » |
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I hope the meletonin helps for you. Please keep an open mind and keep trying to find stuff that works. I am glad that your neuro is willing to be open minded.
PF wishes to you.
Tiannia
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The curious paradox is that when I accept myself just as I am, then I can change. - Carl Rogers
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loraine35
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Re: Past the point of frustration
« Reply #14 on: Feb 27th, 2004, 7:09pm » |
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I'm a little scared here. I went to the er last nite and was told I had a cluster headache not the brain tumor that i was sure it was. the ct scan dissproved my theory.
I did'nt know that this may infact happen to me again and I'm absolutely terrified. Help!
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Ronin
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Re: Past the point of frustration
« Reply #15 on: Feb 27th, 2004, 10:03pm » |
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Hi Loraine35,
You have a right to feel scared. This pain has been described by up to date professionals as "...probably the most severe known to humans, with female patients describing each attack as being worse than childbirth." The good news is that it will not physically kill you. The bad news is that will try to steal your sanity - if you let it. There are a wide range of medications to try but your first priority should be to go to a Neurologist who specializes in cluster headaches.
The best advice I can give you is to read, read, read all that you can on this message board, starting with the buttons on the left side of the home page ( http://www.clusterheadaches.com/newvisitors.html). Here you will find an invaluable amount of information, links to other related info, Doctors in your area specializing in cluster headaches etc.
Also, I would suggest that you start a new thread under the "Getting to know ya" forum. This way many more people will be able to see it and reply to you. The up to the minute collective information on this message board is much more than any doctor or specialist can hope of getting from a probably outdated book.
I am happy to see you've found this board, but can sympathize with your pain. The support on this board is unmatched. Good luck and pain free vibes to you!!
Graham
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May those who love us , love us
For those that don't love us,
May God turn their hearts.
And if he doesn't turn their hearts,
May he turn their ankles,
So we will know them by their limping.
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