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Topic: Neurontin surprisingly worked! (Read 408 times) |
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Mattso
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During my recent cycle I tried the preventative drugs that had worked for me OK during the previous cycle (Lithium and Naproxen, then a prednisone burst), but they didn't do jack for me this time.
Imitrex injections were saving me.
The whole time my wife was trying to get me try Neurontin. It has stopped her migraines cold, but I was skeptical about it for CH. I finally searched here thru the past posts on the subject, and found enough positive reports to warrant giving it a try.
I was 2 weeks into the cycle when I started taking it, and for 2 more weeks I don't know if it really did much for me. I had read that it often takes 14 days to really kick in. Well after 14 days it kicked in to the extent that I never had to take another shot! It just shut my CH's right down  .
Can I be absolutely sure that my cycle wouldn't have just ended then anyway? Nah, I guess not, but I fully expected it to have gone on for another month as usual. Also, when I tried cutting down the dosage after a couple weeks, I was greeted with some pretty strong shadows. Now after a bit more than a month of taking it I have tapered off completely, and the demon has not retuned.
My dosage: 300 mg 3x a day.
My 1 side effect: drowsiness
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kim
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Re: Neurontin surprisingly worked!
« Reply #1 on: May 21st, 2002, 6:10pm » |
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Glad to hear it Mattso,
I too tried for first time this past cycle. Cycle was "mysteriously" shorter than historically...However, I did have some trouble with Neurontin side effect wise....
Sure hope ya stay pain free!
Kim
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eyes_afire
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Re: Neurontin surprisingly worked!
« Reply #2 on: May 21st, 2002, 6:27pm » |
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That's good news! I hope you can continue to stay pain free. Rock on!
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simpson1974
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Re: Neurontin surprisingly worked!
« Reply #3 on: May 22nd, 2002, 8:17am » |
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Two years ago, I had my worst attack of clusters ever. A combination of Neurontin and Inderal knocked it out cold. Now I'm going through another cycle, and Neurontin seems to have lost its effectiveness, just as all the other drugs I have taken. My dosage was and still is the same as yours. I'm wondering if my dosage were to be increased if I would have more success.
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kristi
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Re: Neurontin surprisingly worked!
« Reply #4 on: May 22nd, 2002, 9:19pm » |
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My husband started on nuerontin as a "preventative" a few yrs ago, 3 mos before his cycle usually started. He skipped the cycle completely. A few months after the cycle would have ended, he weaned off the nuerontin, and a few weeks later started having HAs, at a time off yr when he had never had a cycle before. Got back on the nuerontin immediately, but the cycle ran it's course anyway, so they increased the dose. A couple of times since, he has started having shadows again, and they have increased the dose each time, and the shadows went away. About 18 mos ago, he had a cycle, but the headaches were less intense and easier to abort with o2. In the past 18 mos, he has had shadows again that went away with increased nuerontin. And now, another cycle is seriously underway, worse than the last. He is taking 2400mg in the morning and 2400mg in the evening, so we have shied away from increasing the dosage again. But it appears you can keep increasing it and increasing it with minimal side affects for a good while. Each time the dosage increases, he experiences drowiness and some decreased sex drive, but these go away after a couple/few weeks. At the higher doses, we started noticing some serious / anxiety problems, which we THINK are related. But a word to the wise - interested in the shroom therapy and concerned that it was no longer working well, he tried to taper off the nuerontin. He got down to 2000 mg per day and wham! HA every 2 hours. He increased the dosage back up and the frequency dropped dramatically within 24 hours. If your body is used to nuerontin, do not quit taking it in-cycle. It appears that the body does develop a tolerance to nuerontin, but if you increase the dose, it continues to work against CH. And you have a long way to increase from 300 mg 3 times per day. Whatever works, right?  If anyone gets up to 3000 to 4000 mg per day, I would be interested to know if they have anxiety problems develop, well beyond normal stress stuff. Good luck and PFDAN!
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Troxie
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Re: Neurontin surprisingly worked!
« Reply #5 on: May 24th, 2002, 8:45am » |
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 I've been on Neurontin for over 4 years for ice pick headaches. I'm also on Topamax (another seizure medicine) and Indocin and am experiencing "head rushes" so we are now considering weaning off of the Neurontin since I'm on such a low dose of it anyway (300 mg. in the morning and 300 mg. in the evening).
Does anyone have experience with this? My actual PAIN with the headaches is basically gone...but these head rushes occur so frequently that they are ruining my life. For probably 3 weeks out of each month - I can't think of anything else but my head and I KNOW you all know what that's like 
Would like to hear from anyone who has had to wean down from Neurontin. I've got a "plan" from the neurologist to do this slowly, starting with bedtime dosages...but it still scares the heck out of me. I sure don't want the actual stabs with the ice picks to come back.
Help - anybody been through this?
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kristi
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Re: Neurontin surprisingly worked!
« Reply #6 on: May 24th, 2002, 11:53am » |
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Hi Troxie!
Sorry to hear you are having so much trouble.
What exactly do you mean by "head rushes?" Do you think it is the nuerontin that is causing them?
As I mentioned earlier in this thread, my husband is taking 2400mg of nuerontin twice a day and has been for several years. But we have been told that there is no medical need to wean slowly off of it - basically that there will not be any reaction to just quitting. If that is correct, then there should not be any need to wean off at the dosage you are on. Does your doctor think otherwise? It scares me for Scott to just stop taking 4800mg per day. (he hasn't done it yet).
Kristi
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kim
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Re: Neurontin surprisingly worked!
« Reply #7 on: May 24th, 2002, 12:41pm » |
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You can read up on Neurontin at www.rxlist.com. Under dosage and indications it specifically states that Neurontin should be tapered (weened) and can be done in a time frame of 1 week.
I did experience side effects with this drug. One of the side effects effects memory and many people have also experienced memory problems while taking Neurontin.
I also experienced anxiety, depression, decreased sex drive.
I don't know who told you it was not necessary to wean off. Doesn't sound right...............
Well wishes, Kim
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kristi
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Re: Neurontin surprisingly worked!
« Reply #8 on: May 24th, 2002, 1:14pm » |
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Thanks Kim, for your reply and information.
It didn't sound right to me either, not to have to wean off such a high dose. The doc., though, is the Head of Nuerology at the UK Va Hospital, so he ought to know his stuff. He said that the only time there is a need to wean is when nuerontin is being used to control seizures, as abruptly stopping usage can induce seizures again. But it never hurts to check around here for more info. regarding the affect on cluster sufferers.
May I ask what dosage level you were on? Anxiety and depression are hardly mentioned medically as side affects, yet another cluster sufferer or two mentioned experiencing both, so I am now sure his is related to the nuerontin. What has really concerned me is that there seems to be some personality changes on the whole that started when his dosage increased above 3500mg per day.
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Troxie
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Re: Neurontin surprisingly worked!
« Reply #9 on: May 24th, 2002, 1:45pm » |
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Kristi,
The head rushes I've mentioned feel like a "surge" of blood rushing to my head & they come on me at any given time...I can be just sitting watching tv or working at the computer. Very annoying! 
They don't exactly get to the point of what you would call "painful", but because they happen so many times throughout the day, they border on the painful side - if that makes sense...and totally just ruin my life. I just can't think of anything else because I never know when they are going to happen.
I must admit that these "rushes", compared to the awful stabs of the ice pick headaches I had before are just nothing - compared to alot of people here...I shouldn't be complaining at all and should just "zip my lip"...but I do want my life back totally - is that too much to ask? I have 4 wonderful kids and a great husband and I feel like life is just passing me by sometimes. I know they get frustrated with all of this and as much as I try to keep it all to myself - sometimes it's just impossible.
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kristi
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Re: Neurontin surprisingly worked!
« Reply #10 on: May 24th, 2002, 3:49pm » |
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Troxie;
I don't think it's ever supposed to be about comparing who's pain is worse or who has it worse. Just because your situation is not as bad as some of the CH sufferers here, does not mean that you don't have a right to vent and want to improve it. You certainly should not be expected to just accept it and zip your lip. Because whatever you are experiencing, it is affecting the quality of your life and the quality of your family's lives.
I would certainly make sure of several things with your doctor though - first, what is causing the head rushes, how sure is he/she that it is the nuerontin doing it, etc. If the nuerontin is keeping the ice pick headaches away, and stopping the nuerontin is not going to stop the head rushes, then why stop taking it?? You said that you have been on nuerontin for over 4 years - when did the head rushes start? Maybe your doctor has already provided all of these answers, but if not, keep asking!
I hope you are able to find a solution that continues to control the headaches and stops the head rushes as well.
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kim
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Re: Neurontin surprisingly worked!
« Reply #11 on: Jun 2nd, 2002, 7:07pm » |
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Hey Kristi,
My neuro started me on a low dose of neurontin this past go round. I have had pretty negative responses to lots of meds, so we tried 100mg 3x day (i know, small dose)...then when ha's persisted increased to 300mg 3xday. When increased just that one dosage, face got flushed and hot and tight feeling. Felt weird RIGHT AWAY. Decreased dose to 100mg 3x day. Still got hit several times day and night. Only the ha's lasted only 6 weeks this cycle.
For me, Neurontin was a double edged sword like so many other things I have tried. Bear in mind that I have had awful side effects from lots of meds, and do not speak for the whole. However, spoke to others who have used Neurontin as well and have heard enough to feel that this drug is indeed capable of bringing on side effects. Depends on the person taking it.
As for the weaning, you and your doc are ultimately the ones who will discuss and practice what you feel is best for you in your given situation. I don't know ANYONE who was ADVISED to "just stop taking it".............
Best of luck Kristi and PFDAN
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MarkHW
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Re: Neurontin surprisingly worked!
« Reply #12 on: Jun 3rd, 2002, 9:21pm » |
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I was on neurontin for a while a couple years ago...
It worked for awhile, but we had to keep uping the dosage to get it to work. The problem is that I'm chronic so over six months I went up to the max dosage (probably could have stuck me with pins and I wouldn't noticed, but the clusters kept coming)....
Then I started having stomach problems from such a high dose and had to get off of it.
Mark
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The clusterhead formerly known as williamsmh.
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scottwe
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Re: Neurontin surprisingly worked!
« Reply #13 on: Jun 3rd, 2002, 10:13pm » |
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As I have stated in some other posts on this board, I was on 4800 mg per day and when I decided to stop I just stopped. The only effect was that the HA got real severe real fast but then I dosed on shrooms and I have been pain free for 5 days.
The Neurontin caused me some of the same side effects that a lot of you have mentioned here but all of the side effects that came from increasing my dose subsided in a couple of days. As far as the depression and the decreased sex drive I am still unsure but my wife says that I did indeed have those so I guess it's true. It's kind of hard to notice those things about yourself but you can bet your ass that your loved ones notice. I am happy to report that as of right now I am not taking any meds for the beast. PFDAN
Scott
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Troxie
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Re: Neurontin surprisingly worked!
« Reply #14 on: Jun 4th, 2002, 9:38am » |
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Just an update that I'm on my 8th day of the "weaning down" process and I'm STILL HERE!
The dizziness lasted on the first 2 days so I'm hopeful that this is going to work guys - crossing all fingers & toes here...
I have another week at this dosage and then will drop another 100 mg. at the bedtime dose.
I HAVE noticed that I'm sleeping a little lighter at night already and that worries me. Sleep has always been a "haven" for me - especially if I've had a really stressful day worrying about my head (having shadows, head rushes...whatever)..I could always go to bed and get a good night's sleep and wake up in the morning ready to face another day. I'm PRAYING like crazy that getting off of the Neurontin doesn't leave me pacing the floors at night..unable to sleep.
I used to get REALLY terrible bouts of ice pick headaches at night - maybe there's a connection also with being just 'OVERLY tired' and stressed to the max!
I don't know - just add another fear on top of the thousand I have in the bucket right now.
Peace! PFD's to all... 
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Troxie
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Re: Neurontin surprisingly worked!
« Reply #15 on: Jun 4th, 2002, 9:39am » |
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Just an update that I'm on my 8th day of the "weaning down" process and I'm STILL HERE!
The dizziness lasted on the first 2 days so I'm hopeful that this is going to work guys - crossing all fingers & toes here...
I have another week at this dosage and then will drop another 100 mg. at the bedtime dose.
I HAVE noticed that I'm sleeping a little lighter at night already and that worries me. Sleep has always been a "haven" for me - especially if I've had a really stressful day worrying about my head (having shadows, head rushes...whatever)..I could always go to bed and get a good night's sleep and wake up in the morning ready to face another day. I'm PRAYING like crazy that getting off of the Neurontin doesn't leave me pacing the floors at night..unable to sleep.
I used to get REALLY terrible bouts of ice pick headaches at night - maybe there's a connection also with being just 'OVERLY tired' and stressed to the max!
I don't know - just add another fear on top of the thousand I have in the bucket right now.
Peace! PFD's to all...
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