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treatment (Read 5989 times)

johnp

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treatment
May 27^th, 2008 at 1:24am

have had ch now for over 6 years , took all the drugs,immotracts works but i end up haveing to use 10 injections a day , oxygene works to , ive had a ballon surgery on the right side of my face , it didn't help, 2 mouths ago they went into my head with a needle to deading my nerve it didnt work last week i underwent the same surgery, now i'm healing from that and in july im going back, and there going to cut the nerve , has anyone had this surgey i would like to know how it worked for them

the imitrex , what i did was i got a persciption for 2 shots a day , for 3 months sent it into my insurence company and they would sent it 2 my house for 20 dallors my copay , i could take predison 30 mg a day and get down two a few headaces a week , i went from 150 pounds to 200 plus , broke out, had a atitude, so i would back off the steroids and use the imitrex , i found that the first day one shot would work, the next day it was two or three shots , by the forth day i was around 10 shots, after that i would feel like my head was like a bubble head inside , the next day i would feel great no drugs normal feeling , then i would go to sleep and it started all over again , the drugs im on right now is dhe , i take one injection a day it works for about 18 hours and i,ll have a light headace , for 5 mins oxygene will abort, the next one 15 mins, an the third one reel bad , but oxygen works , i have trid the shot at 18 hours , and dhe pills but it seems i can only shorten it by one headace , ????? for you all when i have a iv i feel so good no headaces and one more it seems painkillers when i have a headace dont work but if i hit myself with a shot of imitrex , the painkiller works then, ive found myself going into the emergency room getting druged up going home wakeing up to a reel bad headace no affect of the pain killer takeing a shot and the painkiller would hit me again ,
i tried votox into my head from my forehead halfway down my back , it

« Last Edit: May 27^th, 2008 at 1:26am by johnp »

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Guiseppi

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Re: treatment
Reply #1 - May 27^th, 2008 at 4:06am

WOW!!! You've certainly had a few medications put into you, damned sorry you're hurting as bad as you are. Undecided

You have mentioned a lot of well recognized "abortive" medications, meds you take when the headache starts, but only a couple of "preventative" medications, prednisone and then I think DHE but I'm not sure if that's a prevent or an abortive. Preventative medications are what we take to try and reduce either or both the intensity and the frequency of our headaches. If I had to rely ONLY on abortives I'd be sucking oxygen tanks dry by the dozens and going bankrupt buying imitrex! Wink

I use lithium at 1200 mg a day. At that level it blocks 80-90% of my attacks. Other very popular preventative medications are verapamil and topomax, many have had to combine the lithium and the verapamil to get relief.

Are you currently seeing a neurologist who specializes in headaches? You sound like a fairly extreme case who needs a good specialist who knows something about Cluster headaches to make sure first off you have a good diagnosis, and secondly that you're getting the treatment appropriate for you.

The surgery you are describing has a low succes rate, long term, and has significant risks including partial facial paralysis. Please make sure you are well informed of the risk vs. benefit with this surgery.

Many smarter then me will be along to help you figure out a plan of attack. Wishing you some pain free time soon.

Guiseppi

"Somebody had to say it" is usually a piss poor excuse to be mean.

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johnp CH.com Junior Offline I Love CH.com! Posts: 40 Gender:	Re: treatment Reply #2 - May 27^th, 2008 at 4:17am i have 3 options left now, the one is to drill a hole in my head an put a election inside to simulate the trygenitay neave , its experamental or radation on the neave. or go in and cut it
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BarbaraD

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Re: treatment
Reply #3 - May 27^th, 2008 at 8:02am

John,

I've got a couple of questions for you. The DHE? I've always taken it every 8" hours and it kept the headaches at bay totally as long as I was taking it (it's bad stuff but it worked). I took it IV (works best that way), but have taken it IM (feels like battery acid but works). Never heard of the 18 hour stuff.....

I've had the trigeminal nerve severed and it didn't work, but my left side of my face is numb for the rest of my life -- wouldn't recommend that one.

Preventatives have proved effective. O2 has been the most effective for about 70% of us -- 15 liters per minute with a non-rebreater mask (important). Verapmil, lithium, topamax are the drugs of choice as prevents (a predisone taper while they're getting into your sytem, but no long term steriods).

Imitrex or Ergotomine (Cafergot) as aborts works for most of us if the O2 doesn't.

Narcs have proven to be of no use and can cause rebounds.

You sound like you're having a rough time, but you need to rethink this surgery stuff -- most of the time it's not the answer. It's a totally LAST resort. Talk to your doc about some prevents first. If he's not up to date on those or won't listen (read the meds page on the left) then find a neuro who will pay attention to them). There's no "magic bullet" - it's trial and error for most of us, but there is somthing that will work for you -- the secret is just finding it.

Hugs BD

What don't kill ya, Makes ya stronger!

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Bob Johnson

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Re: treatment
Reply #4 - May 27^th, 2008 at 12:09pm

You didn't mention your doc. Given the complexity of your situation I hope that you are working with a doc who has experience and interest in complex headache disorders. Your options:

1. Search the OUCH site (button on left) for a list of recommended M.D.s.

2. Yellow Pages phone book: look for "Headache Clinics" in the M.D. section and look under "neurologist" where some docs will list speciality areas of practice.

3. Call your hospital/medical center. They often have an office to assist in finding a physician. You may have to ask for the social worker/patient advocate.

4. Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

; On-line screen to find a physician.

5. Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

Look for "Physician Finder" search box. Call 1-800-643-5552; they will send a list of M.D.s for your state.I suggest using this source for several reasons: first, we have read several messages from people who, even seeing neurologists, are unhappy with the quality of care and ATTITUDES they have encountered; second, the clinical director of the Jefferson (Philadelphia) Headache Clinic said, in late 1999, that upwards of 40%+ of U.S. doctors have poor training in treating headache and/or hold attitudes about headache ("hysterical female disorder") which block them from sympathetic and effective work with the patient; third, it's necessary to find a doctor who has experience, skill, and a set of attitudes which give hope of success. This is the best method I know of to find such a physician.

Bob Johnson

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johnp CH.com Junior Offline I Love CH.com! Posts: 40 Gender:	Re: treatment Reply #5 - May 27^th, 2008 at 3:29pm i have the best neurosurgen , he's from houston , referred to him from my neurologist , when i was in the houston headace clinic in febuary
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BarbaraD CH.com Alumnus Offline Hugs to ya Posts: 8333 Douglasville, TX Gender:	Re: treatment Reply #6 - May 27^th, 2008 at 3:33pm Is it Wayne Hurt? If so He IS the best. But he will tell you to try everything else first. He's the one who did my surgery.... Hugs BD
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johnp CH.com Junior Offline I Love CH.com! Posts: 40 Gender:	Re: treatment Reply #7 - May 27^th, 2008 at 3:40pm yes its doc hurt, all i can say is the man is wonderfull , knows what he is doing and after all my years in pain, with his help i think i can beat this !
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KaiB CH.com Junior Offline I love YaBB 1G - SP1! Posts: 34 x0\|Enid\|USA\|\|0\|0\|OK,Oklahoma Gender:	Re: treatment Reply #8 - May 27^th, 2008 at 3:40pm I would have serious thought regarding surgery... Can anyone name one success from surgical intervention.
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johnp CH.com Junior Offline I Love CH.com! Posts: 40 Gender:	Re: treatment Reply #9 - May 27^th, 2008 at 3:43pm my doctor has the best succes rate ,
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seasonalboomer

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Re: treatment
Reply #10 - May 27^th, 2008 at 4:07pm

what kind of input are you looking for here John? From my time on this board I've seen very little positive input regarding surgery. It's a big step for only the most profoundly desperate. This is an internet message board and for anyone to give you serious medical advice it is not really the purpose. So, what you're going to get is people's opinion's and experiences. Not many folks here have gone the route of surgery and the potential for permanent nerve damage.

I wasn't aware that there was all that much a a success rate with regard to these surgeries. In fact the only person I'd read much about on this site seemed to refer to success but still had CH, which doesn't sound much like "success" to me. Call me crazy.

Scott

Scott

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Brew Ex Member	Re: treatment Reply #11 - May 27^th, 2008 at 4:14pm I have to agree with Scott here. If you're looking for validation regarding your decision to have surgery, I don't think you're going to find much of it here. All we see is example after example of failed surgeries.
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johnp

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Re: treatment
Reply #12 - May 27^th, 2008 at 4:19pm

I had DHE IVS in the hospotal every 8 hr , they took my headaces away, but when I would go home my headaces would start over again, tryed DHE pills they don't work, got DHE in a injection , but it only will work for around 18 hours , ita not a 24 hour fix , but better than the headaces every one or two hours, i go threw about 10 to 14 oxygen bottles a week , my headaces last for 5 mins to 40 mins with oxygen, turned all the way up , it burns inside my head with the oxygen but i can relax and they go away

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johnp

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Re: treatment
Reply #13 - May 27^th, 2008 at 4:33pm

Its scarey , and the pain is so bad with these headaces , one min your fine within a few mins , the end of the world is apawn simple things in life or so hard going out to dinner , your fine you start to eat then you have to go to the car and hit the oxygen for awhile, or go into the bathroom and inject a shot of imitrex, if I had only a 3 month cycle of these maybe it would be ok or one day a week but all the time , I see no other option then surgey Cry

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Brew

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Re: treatment
Reply #14 - May 27^th, 2008 at 4:42pm

I'd sure want to know that I've exhausted ALL non-surgical options first.

You say you've tried all the meds. Really? Maybe you could list every one here and then people could jump in and say, "What about this?" or "What about that?"

And have you checked these guys out?

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LeLimey

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Re: treatment
Reply #15 - May 27^th, 2008 at 5:09pm

John alot of us here are chronic too.

We might sound negative but it is because we DO care, we want to help, we don't want to see you face surgery if it isn't absolutely necessary. Quite simply, success stories are rare. Either they don't happen, or people don't care about letting others know.

There are also all types of surgery. One of our members here has just last week had an ONSI implant. That at least is removable, cutting a nerve isn't reversible. Look at ALL surgical as well as non surgical.

I know you're exhausted, I know you're tired of fighting and I know you're demoralised. I know where you are and I'm feeling tearful on your behalf too but you know what? I'm going to bloody well hold you up while we help you make sure that whatever you choose is right for you and then I'm going to support your decision all the way.

All I am asking is that you give us a little time, a little info and a little faith. That stuff can move mountains y'know!! Wink

As Brew said, lets go through what you have tried, aborts AND preventatives. Lets see if there is anything we can suggest for you to discuss with your doctor. We aren't doctors, we ARE expert patients! We don't know your medical history. Some options may not be right for you but at least you will have a sound knowledge to work from with your doctor.

I'm going to suggest also that you contact the family services team at OUCH. They are a wealth of information and will strengthen the advice you'll get here.

Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

We're all in this together, there is nowhere else you'll be understood like here.

Welcome

Helen

« Last Edit: May 27^th, 2008 at 5:10pm by N/A »

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BarbaraD

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Re: treatment
Reply #16 - May 27^th, 2008 at 7:43pm

John,

I (and my neuro) had exhausted everything he knew of and that I could think of back in 99 and he contacted Dr. Hurt. I visited with him for four hours and was desperate and we decided on the surgery. I did it two weeks later. For a month I was pain free and then the headaches hit back with a vengence....

About 9 months later (on this board) a nice guy in CO told about a study he was in on Topamax. I called my neuro who had just heard about it and he called in a script and it was almost an instant success.

Today I'm still on the topamax - and yes I'm still chronic and I still have "high cycles" but I'm not desperate anymore and live a "normal" life (what I consider normal).

But the downside is -- I'm numb on the left side of my face and will be the rest of my life -- I have a paralysis in my left jaw (this should have gone away but didn't - I've learned to live with it but it's there) and I have some optic nerve damage that I've learned to live with. Did Dr. Hurt warn me of these things -- Yes he did - several times. He also told me the surgery could kill me. I took a gamble and lost.

What I'm saying is it's a CHOICE that only you can make. I made it and it was the wrong one. I don't have any regrets because that would be a waste of time, but think long and hard before you have the surgery. Dr. Hurt will tell you the same thing. He's a wonderful man. Give him a hug for me the next time you see him.

Hugs BD

What don't kill ya, Makes ya stronger!

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johnp

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Re: treatment
Reply #17 - May 27^th, 2008 at 11:33pm

I tried topamax to it didnt help, verapamil, will stop them for a week at 480 mg, but then they come back, it seems it builds up in my body, it seem the migranal nasal spay works the best for me now , but its not a fix, stress is a big factor with these headaces it seems , tried lexipro , it helps, its a must when your on steroids helps with my mood, when mine or reel bad if I take 40mg of steriods it will break my headaces for 2 days , antibotics work some of them but I can live off them, I have noticed with myself if I drink a bottle of the green stuff to go to the bathroom , i,ll have headaces every hour on it ,for around 8 hr and after i get myself empty out, im fine for 2 days, no drugs ect,

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Batch CH.com Alumnus Offline Control The Beast With O2 & D3 You Must Posts: 3706 Bremerton, WA Gender:	Re: treatment Reply #18 - May 27^th, 2008 at 11:48pm Hang in there John and check your PM V/R, Batch
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