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Topic: Is there an Implant in my future? (Read 2210 times) |
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AllClusteredUp
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Is there an Implant in my future?
« on: Dec 16th, 2005, 12:04pm » |
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Hi! Been Chronic for 12 years. Pain like yours. 6-8 attacks/day, 3-4 hrs each, every day. However you do the math, there's no time left for living. Career long gone. Exhausted all mainstream therapies, including a number of experimental ones, all ineffective. Tried as many alternative therapies as I could find, ie. accupuncture for 2 yrs. No luck. Over last 2 yrs, symptoms accompanying the headaches, the tearing, redness & burning of the eye (SUNCT) has worsened & is now constant, independent of the headache. Convinced the 2 together are not consistent with continued life. Checking out not an option, my wife beat me to it by meeting up with a drunk on the road & not pulling through, leaving me and my young daughter pretty much alone in the world. Spent last year comatose on Zyprexa, woke up twice in the ER this summer. So, out of desperation am seriously considering the Brain Implant. Other surgical proceedures do not appear to be successful, or do not last. Am making arrangements to find out more first hand by going to Europe, and in preparation have started ultra high dose Prednisone so I could make the trip. Feel alive for the first time in 7 yrs (last time I was on Pred.). Started using my computer again & found this site full of interesting facts & people so I thought I'd join.
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| « Last Edit: Dec 16th, 2005, 12:06pm by AllClusteredUp » |
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marlinsfan
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Re: Is there an Implant in my future?
« Reply #1 on: Dec 16th, 2005, 1:34pm » |
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Welcome to the nuthouse. You've had a tough go at it, so here's to hoping that things will look up soon.
PF wishes.
Jose
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E-Double
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Re: Is there an Implant in my future?
« Reply #2 on: Dec 16th, 2005, 2:02pm » |
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www.clusterbusters.com
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I can't believe that I have to bang my
Head against this wall again
But the blows they have just a little more
Space in-between them
Gonna take a breath and try again.
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AllClusteredUp
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Re: Is there an Implant in my future?
« Reply #3 on: Dec 17th, 2005, 4:06pm » |
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Thanks for the wellcome and advice.
I guess I sound somewhat radical but I've really been through the mill. Clusterbusters was still an eyeopener.
It just goes to show there's always something new in the world to evaluate & experience. I'll look into it more thoroughly.
Migranol & triptans make me sick as a dog & I think may preciitate rebounds in me.
I've had occipital nerve blocks but they don't work for me so no sense having that implant.
What I do look forward to is heavy duty dental work! The mandibular nerve block works wonders, but only for a day or so.
Steroid injections in my trigeminal nerve also works wonders, but there's just so many of those the ENT was willing to give.
The preventative drugs that help put me to sleep - period.
So that's why, as a last ditch, I'm looking into this. But not very enthusiastically.
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LeLimey
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Re: Is there an Implant in my future?
« Reply #4 on: Dec 17th, 2005, 4:20pm » |
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DEFINITELY look into clusterbusters long long before you consider any surgery! That is irrevocable. Have you ever tried O2 as an abortive, personally it's a life saver for me. Another thing you may want to look into is DHE.
Unsolved in particular is a member who swears by this therapy.
I hope you find some success, I'm not saying don't try the surgery, I truly do understand your desperation... just please please please try everything else first. There is no way back from that
Regards
Helen
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Jonny
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Re: Is there an Implant in my future?
« Reply #5 on: Dec 17th, 2005, 4:26pm » |
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on Dec 17th, 2005, 4:06pm, AllClusteredUp wrote:| I guess I sound somewhat radical but I've really been through the mill. |
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Mill?.......12 years chronic is a cake walk to some of us....try 30 years!
You will find more help here than any doctor can provide when it comes to information.
Welcome, sorry you have to be here!
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It is up to YOU to educate yourself and then help your doctor plan your treatment. If you just sit down in front of your doctor and say "make me better" you are setting yourself up for a great deal of pain.
- Guiseppi
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E-Double
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Re: Is there an Implant in my future?
« Reply #6 on: Dec 17th, 2005, 4:45pm » |
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Dude.....
I just moved from East Northport to Commack in October.
A damn shame to be so close and to not meet.
I'm here if you need.
E
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I can't believe that I have to bang my
Head against this wall again
But the blows they have just a little more
Space in-between them
Gonna take a breath and try again.
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AllClusteredUp
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Re: Is there an Implant in my future?
« Reply #7 on: Dec 17th, 2005, 4:45pm » |
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Thank you for the input.
I use O2 frequently - but to tell you the truth I still can't tell if it's really doing anything cause the pain in my face is 24/7 and the actual headache remains intermittent throughout the day.
Before DHE was avail in nasal spray, I looked like a junkie because I was shooting it IV so often. I use it now only rarely cause it tends to make me pretty sick & I want to avoid rebounds.
I know surgery is radical & irreversible thats why I haven't done anything yet. The occipital nerve stimulator would be promising, but occipital nerve blocks don't do a thing for me, hence I'm looking into the hypothalamic stimulator.
I realize 12 years isn't long to suffer in comparison to some, but I've been marginally functional for years and totally non functional for two. I have to remain independent and I guess I'd like to try to recapture a life back. I'm not certain about surgery, but I am serious about finding out more about it from the doctors who do it.
Clusterbusters does heave some things to investigate as well. Appreciate that referral.
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LeLimey
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Re: Is there an Implant in my future?
« Reply #8 on: Dec 17th, 2005, 5:15pm » |
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Pain in your face 24/7 sounds awful, thats not characteristic of CH commonly, have you been diagnosed with any other headache conditions in addition to CH? I know there are several people here who have multiple headache conditions in addition to CH so you'd be in very good company!
As far as I'm concerned one day of CH is one day too many. I've gone from not having ch to being chronic in one fell swoop, no being episodic and I know its tough even if I haven't suffered so long. I know how it feels to have 6-8 hits today, I wish I didn't. I wish you didn't and I wish wholeheartedly no one else here did either.
Using O2 is quite an art. There are definitely things which make it more effective. The type of mask you use, whether you stay on it for a period of time after your hit has abated, we all have our own little tips. Read back through some of the older threads in particular here and here
I hope they help!
Helen
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AllClusteredUp
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Re: Is there an Implant in my future?
« Reply #9 on: Dec 17th, 2005, 5:31pm » |
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Thanks for the O2 tips
Never ceases to amaze me how many ways there are to do things.When you think you've done it all somebody tried things you never thought of. Will check those out.
I am excited about getting a new medical opinion on your side of the pond next month. Also hoping for new ideas.
Thanks again.
Thanks again
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LeLimey
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Re: Is there an Implant in my future?
« Reply #10 on: Dec 17th, 2005, 5:34pm » |
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Are you coming to England or did you mean Europe in general? If its England let me know and I'll get a few of us together and we'll all meet up if you like.. give you a bit of moral support! 
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The arsehole I'm divorcing needs to get a life and stop stalking mine
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AllClusteredUp
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Re: Is there an Implant in my future?
« Reply #11 on: Dec 19th, 2005, 7:14am » |
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Thank you for that offer, it's wonderfully considerate of you.
I will be in the UK, but only for a brief time and I don't see how we'll have the time to get together.
Thank you for your kindness, hopefully we'll meet in the future, as I'd like that.
Have a great Holiday!
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Beastfodder
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Re: Is there an Implant in my future?
« Reply #12 on: Dec 19th, 2005, 9:50am » |
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Allclusteredup,
It will get a lot better for you.
I read you're meeting up with Prof Goadsby so that should give you some options. It'd be interesting to see firsthand what he has to say about clusterbusters - my understanding is that he has more to say off the record than on it for fear of being misquoted about hallucinogen drug misuse.
It's done the business for many of us - and definitely would be worth looking into before you consider the knife and/or bone saw.
All the best
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O2 and clusterbusters - naturally
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