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NDPH Community NDPH Support Forums Introductions & Personal Stories uping the meds again....
 

uping the meds again....


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06/28/2008 18:42
jacee67
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 ok I am sooooooooo not wanting to do this, but I gave in. I truly wanted off the neroutin, but my doc convinved me to double my dose for 6 weeks. If I still get nothing I am coming off. I am now upto 2400mg.. and oh yah up 8 pounds now too, YUK..

Does any one else take this? does it help? I still have my daily headaches, i still get migraines.. not as often , but i think that ismore due to the vitimans I take than the neroutin.. any how.. how long should one work with the same med? I have been on it since dec.. is it time to give up on it?
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06/28/2008 20:11
lexiekate
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 i take it. as much as you are taking now. Been on this for about 2 mos. It started working for me within the first month. This is the first and ONLY medication that has scratched the surface for me. I want to try Lyrica though because with the Gabapentin you have to take so much of it. My neuro said he'd keep upping it if we have to. I am 23 yrs old with a 2 1/2 yr old son. I weigh probably close to 120 very petite though. Umm...seems as though I've gained a little but i tend to pork out a lot anyway depending on my mood. Before having my child I weighed 103 lbs. I never did get back down to my original weight nor would I want to. You might want to give it a chance but if you've been on it for longer than i, I don't think it's worth it.
Lexie
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06/29/2008 15:40
Lisasmom
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 My daughter worked up to a dose of 2700 of Neurontin. It didn't seem to help her, but we really wanted to give it a try since that dosage was the one written about in a study by Dr. Rozen that reported a patient's headache going away. She didn't experience any weight gain with it, but everyone's different. Six weeks sounds a little long for a trial at the same dosage, to me. Maybe others have an opinion on that.
A new update on my daughter's recovery from her June 24 headache surgery is posted at the bottom of my profile page.
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06/29/2008 20:29
MaryR
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 I don't know if six weeks is too long for a trial on one dose of Gabapentin or not. My appointments are now about 4 months apart so I end up with 4 month trials (way too long...I get bored). I don't think the gabapentin is doing enough for my headache at the dose I have it at (1800mgs/day) now to be worth the weight gain that I am getting (can't remember how much but it is going up). I don't know if my neuro will want to try higher to see if he can get a better effect before we start dropping it or not (I doubt it since I have started to notice other side effects...maybe from the combination of meds).
Mary
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06/30/2008 07:53
bgcmom
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 These doses make my daughter's dose sound like nothing! She takes 200mg three times a day....600mg/day. 'Course, she is 11 y/o and weight is 87#. I don't know if that has anything to do with her dose or not. I do think the Neurontin has helped her some. She started it in April, right prior to her hospitalization. We have not increased her dose since she came out of the hospital, though he did mention the possibility of increasing to 900mg/day. She has an appt. tomorrow afternoon. I am planning to ask him about these higher doses, to see what he thinks.

She is also scheduled for another greater/lesser occipital nerve block, by her pain management doc. on Wednesday of this week. (unless her headache doc doesn't agree that it should be done).

bgcmom
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06/30/2008 11:16
MaryR
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 I think the dosage does have a lot to do with size and weight. Jrz mentioned that when he tried it his dose was a lot smaller than mine, but at the time he was also a lot smaller than me. I think his was a lot closer to your daughter's dosages, though I don't remember exactly.
Mary
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06/30/2008 14:10
jacee67
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 I am uping the dose by week, I am taking an extra 400mg in the am for a wk then add 400mg to my pm and then add 400 to my afternoon, then my appointment is in aug. So I will technically only be on that 2400mg dosage for 4 weeks once I am up to the full 2400mg. I guess I should have explained that better, sorry.

But it is alot and I do not feel its helping. But I do trust my doc. This is not my neru,. just my reg doc, she knows me better than any one.

I actually jsut postponed my neru appointment for I feel he does nothing to help me, just takes my money and talks alot. but never changes anything. he wasnt even the one that put me on the meds.. my reg doc did.
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06/30/2008 20:25
lexiekate
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 I stopped going to my neurologist because I was the one recomending the meds for MYSELF! He didn't seem the least bit concerned that uh I have a headache that hasn't gone away in two years...doesn't that sound odd to you? He just didn't care. All for the money! Stick with the doctors who at least care!
Lexie
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06/30/2008 22:06
Lisasmom
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 My daughter had a neurologist who specialized in headaches who was similar to your doctor, but very caring. I would do research on this forum and other places on the internet. I would ask him what he thought about a drug or treatment. If he agreed to it, he would give us specific instructions on how to get off of the drug she was on and how to build up on the new drug and how long to give it a try. I think patients with NDPH are very frustrating to doctors because they want to help them, but they cannot. We used to see the partner of this doctor but he moved. When I asked him if he had ever had patients like Lisa whose headache wouldn't go away he said yes but that he had lost contact with them because that type of patient usually moves from doctor to doctor, trying to get help. We are on neurologist number eight, so I guess he was right!
A new update on my daughter's recovery from her June 24 headache surgery is posted at the bottom of my profile page.
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07/01/2008 13:17
spark
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 Hi guys,

I started taking gabapentin 2 weeks ago, starting on 100mg 3x/day. Since then I've reached 200mg 3x/day.

I know that this sounds rather low, but I've been reading that apparently this is when the side-effects are potentially higher as the body adjusts to the medication. So far, thankfully I've experienced very few side-effects which is a relief. In terms of pain relief, at times I think that it's taking the edge off but then today it is hurting so much - and that makes me despondent again I've been told to go to 1800mg/day and then keep it at that for 6 weeks - or as much as I can tolerate (whatever this means - I can barely tolerate the pain!). So fingers crossed.

Post edited by: spark, at: 07/01/2008 13:18
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