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        Cluster Headache Help and Support >> Cluster Headache Specific >> Adjustments
        
(Message started by: DennisM1045 on Jun 13^th, 2007, 10:46am)

Title: Adjustments
Post by DennisM1045 on Jun 13^th, 2007, 10:46am

This is the first time in my life I've been on any medication :-/ I’m on day 5 of my 10 day ramp up to 900mg of Gabapentin (Neurotin). The night dose (300mg) wasn’t a big deal because I slept through it. Took my first morning dose today and now I’ve got a two martini buzz and I’m not fit to drive to work. How long will it take to adjust? Is this going to be the norm? God I hope not.

I manage a team of software developers. My job is very technical and requires a lot of analysis and critical thinking. How am I supposed to do that while my head is so fuzzy? I’m going to give this drug a month to see if I adjust. I just hope I don’t loose too much credibility at work in the process. In my job trust is earned every day. I don’t trust myself right now.

I’m PF for 9 days now ;;D A small part of me wants to believe that the Gabapentin+Verapamil is keeping the beast at bay even though the engineer in my knows that it’s just the end of another cycle and it takes a while for all this medication to take effect.

Ok – so what if the meds work? - but work at what cost? I’ve got 7 of my 10 kids still living at home. Two in college, one in High School, three in Elementary School and one still at home. I’m the only source of income. My wife is a stay-at-home mom. Neither of us wants that to change. I guess if any of that gets put in jeopardy then I’d rather wrestle the beast with O2, Imitrex alone.

I’m sure others have faced this dilemma. I’d appreciate hearing how you’ve handled it. Thanks…

-Dennis-

Title: Re: Adjustments
Post by Wayne on Jun 13^th, 2007, 11:01am

Howzit Dennis

I can't speak for gabapentin but I had a very similar experience with Topomax at high dosages (200mg/day +) and I never adjusted to it. I had to take the dosage down to 50mg which was a level at which I could function but I still suffered short term memory loss. I switched to Verapamil and I seem to be ok with that.

Title: Re: Adjustments
Post by Phil L on Jun 13^th, 2007, 12:30pm

Hi Dennis,

High functioning and high med dosage generally do not go hand in hand. What seems to work for me is a combination of Verapamil, Imetrex and 02 - especially the 02.

Phil

Title: Re: Adjustments
Post by UN solved on Jun 13^th, 2007, 2:47pm

Hi Dennis ! I don't quite know how to respond to that one. I don't think you're going to find just one correct answer.
Meds can do a number on you both physically and mentally. It's going to ultimately come down to a 'risk vs benefit' question that nobody can answer but yourself. You'll have to ask yourself how the meds are affecting you and is it worth it ?
Ask your doctor, but I think (with Neurontin) that after you take it for a little while, that buzz feeling will go away. ( Now if you were taking Topamax, I would've said "You're screwed !" ;) )

Goodluck

UNsolved

Title: Re: Adjustments
Post by DennisM1045 on Jun 14^th, 2007, 10:09am

Thanks for the feedback everyone!

I know this is an individual decision. I’m still curious to learn about the experience of others with this coctail. I guess there aren’t that many on the board that have gone the Gabapentin+Verapamil route. I’ll update this thread with my experience so others will have some data to look at. I’m determined to give this a month before making any cost/benefit decisions. I told my boss about the diagnosis and the medication. He seems to understand. We’ll see.

Well, day two of my morning dose and I drove myself to work this morning two hours after taking 300mg of Gabapentin. I didn’t wait because of the medication; I just got behind the shower line. In my house, if you miss your bathroom window you go to the back of the line. I’m fuzzy but not dizzy, feeling functional and ready to do some coding. I’ll be sure to review what I’ve written this morning once my head is completely clear this afternoon. That’ll be the real test :)

I’m also PF+10 days now. That’s a great thing. I always know when the beast is gone. I love life during these periods. The word euphoria comes to mind. Because I was late leaving I got the chance to spend some time on the couch with my little ones. It was a regular hug fest. They know the beast is gone for now too.

My kids know when I’m getting a hit. Sometimes they know it before I do. I’ll snap at something stupid and I’ll hear; “Dad do you have a headache”. (This from a four year old, it breaks my heart.) Then I think about it and realize that I can feel the shadow sitting behind my eye, waiting to erupt when I go to sleep.

The EKG I had last Thursday showed nothing wrong with the rhythm but a low heart rate - 52bpm. So now I have to go through a stress test. If I get a hit in the mean time I’m still not going to be able to use Imitrex. My normal heart rate was always ~60bpm so I’m not worried about the test. I am glad that the PCP and Neurologist I’m seeing are talking and cautious.

Thanks again everyone.

-Dennis-

Title: Re: Adjustments
Post by Lotus on Jun 14^th, 2007, 10:27am

Hi Dennis and welcome,

My husband took Neurontin and he got up to 900mg three times per day ( total 2700 mg daily ) slowly of course. The side effects went away after about 3-4 days once he was on the same stable dose. He found that the side effects were fairly bad while the dose was being increased, but once he reached a stable dose they went away completely.

He was on Neurontin, Lithium and Verapamil and that was the best combination for him. He went from 4-6 attacks per day to maybe 2 every 2-3 days which werent bad and could be taken care of quickly with oxygen, ice, imigran or zyprexa.

Each person is different though, so if the side effects get so bad that you cant function or if they worry you then you should really discuss that with your doctors.

I sincerely hope that Neurontin and Verapamil work well for you.

Painfree wishes.

Annette

Title: Re: Adjustments
Post by BarbaraD on Jun 14^th, 2007, 2:27pm

My husband took neurotin three times a day (100mg) for years and never had a problem but it almost killed me.

I take topamax, but I take the whole dose at night so I don't have the dopamax side effects. Have a slight short-term memory loss, but I'm OLD, so some of that I can't blame on the med.

Hope you "level" out and the side effects disappear and you stay pain free. 10 KIDS? Bless you...

Hugs BD

Title: Re: Adjustments
Post by thebbz on Jun 14^th, 2007, 6:35pm

I work at heights of up to several hundred feet. I had to leave the drug cocktails on the ground. That said I used imitrex, 02, and caffeine...lots of caffeine. I used to write down things that I normally wouldn't. Calculations were difficult, however I would simply take the time to double check. I have taken so many drug cocktails over the years, all of them eventually failed anyway. Hope it's all over soon. You have ten kids work should be a relief.
all the best
jb
When the drug cocktails quit working consider some reading here:
clusterbusters.com???? Good results, no side effects at work

Title: Re: Adjustments
Post by DennisM1045 on Jun 15^th, 2007, 2:23pm

Thanks for the responses. I appreciate the feedback. And yes, I do go to work to relax ;;D

Unfortunately I had the chance to try out my O2 yesterday. Attended my daughter’s Kindergarten graduation and it touched off a shadow along the lines of a K-3. This is the first time I tried O2 so I didn’t recognize that the seal on the left side of the non-rebreather mask was missing. The shadow was reduced but not eliminated. Once I realized that the seal was missing I put some scotch tape over it and relied on the functioning right seal to let my exhaled breath escape. This yielded much better results a half hour latter when I tried it again. Added a cup of coffee and the beast was gone.

Title: Re: Adjustments
Post by LeLimey on Jun 15^th, 2007, 2:28pm

Dennis ramping up so fast may be a part of the problem. maybe if you call your doctor and ask about slowing the rate of ramp it might help (that sounds vaguely lewd and I'm sorry!)

I don't know if you can take prednisone with neurontin but it might be worth asking your doc about a pred taper too as that has been very effective for most people here at blocking hits while you ramp up on other meds. Its certainly worth questioning.

I hope this helps a bit - hang in there and remember we're all on your side!

Helen

Title: Re: Adjustments
Post by thebbz on Jun 15^th, 2007, 5:05pm

Thats a good catch with the butterfly missing on the mask.
Check this out and get one:
clustermasx.com
Its well worth the change.
jb

Title: Re: Adjustments
Post by puppetonastring on Jun 17^th, 2007, 11:20am

Dennis,

I've faced similar problems. Very frustrating trying to be functional and deal with the onset of a cycle at the same time.
This last bout (which I hope is winding down) the doctor initially put me on topomax (200mg day) and I had to cease taking it immediately because I was so loopy I was dangerous (short term memory and vocab issues asside)

I switched to verapamil at low dosage as a cycle management treatment - for me this takes a little bit of time to "kick-in" - over a few days the frequency and severity of hits drops. Calcium Channel Blockers in general are the best cycle management agents for me.

I rely upon Imitrex as an arrestor, and this works well so long as it's not overused (have not tried O2 yet - not as convienient - try getting that on an airplane).

Red Bull works somewhat on shadows in a pinch.

And lastly, for me, I find that sleeping (or trying to sleep) "sitting-up" helps. Not perfect, but, where-as prostrate attempts at sleep always result in K6+'s, somewhat verticle attempts at sleep bode much better - go figure)

Title: Re: Adjustments
Post by DennisM1045 on Jun 17^th, 2007, 7:56pm

I’m beginning to get the idea that a lot of folks here ramp up on meds at the onset of a cluster and ramp down when it ends. The Nuro I’m seeing seems wants to keep me on Verapamil + Gabapentin for the long term. Of course my clusters are short in duration: 6 weeks on 3 weeks off. I guess that doesn’t leave a lot of room for ramping meds. What conventional knowledge here? Or does this have more to do with the specific meds I’m on?

I’ve been sleeping sitting up during clusters for years now. I’ll be able to stay in bed maybe one in ten nights when in cycle. I give it a go every night though. I know the cycle has ended when I wake up next to my wife [smiley=inlove.gif]

-Dennis-

Title: Re: Adjustments
Post by Wayne on Jun 18^th, 2007, 2:47am

Hi Dennis

My Doc said that Verapamil usually takes about 2 1/2 weeks to become effective and as far as I can judge he was right. I've been on it a month now and PF the last 11 days. He also said it was a relatively harmless drug which is suitable for long term use if needed. If your cycles are so close ogether then you really wouldn't be able to stop between although you may be able to lower your dosage between cycles.

Cheers,

Wayne

Title: Re: Adjustments
Post by ClusterChuck on Jun 18^th, 2007, 10:15pm

I was on neurontin and verapamil. The MINOR side effects of the neurontin disappeared within a few days. Unfortunately, after an initial good results, the beast just laughed at the meds. They did nothing for me. I hope they DO work for you!

PLEASE buy the bestest (my youngest used to LOVE that word) mask out there. The Clustermasx^TM. As thebbz said it can be purchased from www.clustermasx.com for $25 USD. It is designed and marketed by a fellow clusterhead in England, Ben. It will be the best $25.00 you ever spent! I have three of them. One for my house tank, one for my auto's tank, and a spare in case anything happens to one of them.

Good luck!

Chuck

Title: Re: Adjustments
Post by DennisM1045 on Jun 19^th, 2007, 4:01pm

Well I’m fully ramped up now - 900mg/day. I’m not fuzzy any more though occasionally I am dizzy and I’m more tired than usual. I almost fell on my face getting off the mat after yoga practice last night. Now that would have been embarrassing [smiley=blush.gif]

My stress test is scheduled for Friday and I’m off to see my Neurologist tomorrow morning. While I thought I was shadowing once last week, I’m now thinking it was pollen related. Spring up here in New England. If I discount that experience (which was taken care of with O2) I’m PF+15 [smiley=sayyes.gif] So there isn’t going to be a lot talk about with my Neurologist.

What makes the clustermax so much better than the rebreather I have now (aside from my rube-goldberg, scotch tape left seal). Everyone raves about it but I don’t see the difference looking at the web site.

Title: Re: Adjustments
Post by thebbz on Jun 19^th, 2007, 5:21pm

The difference is 100% pure 02 delivery, with better control over flow. This allows you to get what is intended regarding purity and efficiency. There are also larger bags for larger lung capacity and smaller ones for smaller lungs. The mask has an anethesia type face mask and a mouth tube which comes in handy for hands free operation. It also provides one way flow to eliminate inhaling ambient air.
I could go on but I think you get the picture.
all the best
jb

Title: Re: Adjustments
Post by DennisM1045 on Jul 6^th, 2007, 10:25pm

It’s been 3 1/2 weeks since I started 900mg (300mg 3x/day) Gabapentin. This med combined with 240mg Verapamil (which I’ve been on for a while now) has kept me pain free with just 1 Kip 6 and 1 Kip 3 to show for it. I’m well past the point where another cycle should have started. I haven’t had a Kip 8 since Memorial Day (May 28th). My cycles usually give me 3-4 Kip 8+ CHs a week and this is the first time in a long time I’ve gone over a month without a new cycle starting up.

Unfortunately, I just can’t function on it. I’m just to damn fuzzy. I can’t seem to focus on more than one thing at a time (no that’s not just a male thing). My kids think I’m stupid (ok, maybe this just confirmed things for them). And though she would never tell me to stop taking something that is clearly helping, my wife won’t be sad to see the med go. I can’t follow simple conversations. It’s been pretty frustrating for her.

In the last week, two hours after I take each dose, I have a 3 hour headache. Not a CH, just a pounding, “I’m on too much medication” kind of headache. I had a similar experience from morphine following a bowel resection in 2000.

I have also noticed an occasional tremor in my fingers too. Makes it pretty hard to use my Blackberry. My job is suffering too. I can’t stay awake in meetings. My boss has been understanding but I’ve been wondering how long that will last.

Two days ago I pulled out in front of an oncoming car with my wife and six of my kids all screaming CAR! CAR! CAR! I didn’t hear them. I couldn’t hear them. I got distracted by a kid sitting on a porch in front of the intersection. She was following her Dad around while he worked outside. It was a cute scene. I know I looked before I saw her. I’m not sure how long I sat staring. 2, maybe 3 seconds? I simply don’t know and it is the last straw. I’ve scheduled a follow up with my Neurologist on Monday. I’m going to get the ramp down schedule from him.

At this point I’m not sure I want to try “another” medication. My Neurologist said the next on the list of things to try is Lithium. I don’t want any part of it. Not after what happened the other day. My family needs me 100% alert every pain free day. On day’s I get hit, at least I know to be extra careful and take my time. Phil said it best, “high functioning and meds don’t go too well together”. A father of 10 doesn’t get any days off. That’s just the way it is. It’s also the way I want it.

So from here on out I’ll just rely my O2, caffeine, and Imitrex injections as a last line of defense. That is a lot more than I had back on Memorial Day.