Hello hope everyone is as well as possible and looking forward to Christmas! I’m doing really well, all thanks to gabapentin. I have lots and lots of 85-90% days and am living my life again! I only take 100mg at night, I’ve tried going higher but it makes me worse so I’m sticking where I am! I am so glad as I was nearly side tracked by a Lyme disease diagnosis that was obviously rubbish! It delayed a proper med trial for 6 months! GABA didnt work straight away (took about 2 months to kick in) but wow has it!
I have also just been diagnosed with polycystic ovaries so need to try getting that sorted as I am always v bad during my period so hormonal triggers may be making my migraine worse!
Merry Christmas all! Lizzie xxx
Great news Lizzie. You were a prime example of how a pseudo diagnosis can waste so much of our time getting well. But you know what? Think of it as 6 months you put in for the benefit of others who might otherwise get sucked into Lyme nonsense. We didn’t know of a person at the time who had been down this track with Igenex and came out the other side – you are now a clear example of such a person sorting it all out with a well-suited migraine med. I think we can safely say 2013 was the year of the Lyme craze (2012 was bioidentical hormones). There were a number of casualties. I wonder what it will be in 2014? Let’s hope nothing.
So great that you now have this well managed.
Congratulations on doing so well and finding a med that works.
I had an appointment with my Doctor last week and we discussed trialling Gabapentin on top of the Nortripyline I’m currently on. The Nort is definitely helping and getting me to 70-80% now but I can’t tolerate a higher dose of it. I’m torn between sticking to the Nort on its own for a little longer as I’ve still seen some improvement in the last week or adding the Gaba after Christmas day. I have 300mg capsules to try, I didn’t realise you could get smaller ones, maybe I’ll try splitting then at first.
Thanks guys. Means a lot. I’d defo recommend gabapentin. Is hard at first but worth sticking with it! Xxxx
Hey Lizzie ,
Great news , really happy for you (& a bit envious!). I’m also on gabapentin now 700mg per day , your right increasing it is hard work but worth it! I think I will be increasing again up to 1000mg after Christmas. For now it’s mince pies & champagne for me! (Don’t tell the mav police!)
Big love x
Glad it’s working for u babe! That’s great news. Well done on getting up to such a high dose! Do u have pcos too? I seem to remember u saying u did? Did dr s recommend anything to help it? Xxxxxxx
thats great lizzie! i am shocked that such a tiny dose and only at night is helping. so when u go past 100mg do ur symptoms get worse for along time? have u tried sticking at a higher dose for awhile? how long have u been on the gabapentin for? thanks for sharing your good news!
Yeah things are just worse on 200mg. Given it a good couple of months at the higher doses but 100mg is working really well. I may try to up it again soon! Xxxx
im surprised bc i think the beginning therapeutic dose for migraine headaches is 900 mg a day. there is someone on here i forget who that takes 2700 mg per day. im confused bc i remember you saying that u thought you got way better on lyme antibiotics too???
Yes you can go really high on gabapentin. Dr s said its incredibly variable person to person as to what works and the migraine trust in london said that often the lower doses are better. There is absolutely no question that gabapentin is helping me loads. I did think the antibiotics were working but I always said in every post that it may have also just been the passage of time, and not such dramatic improvement as has happened with the gabapentin. I’m working now, go out all the time Etc. I often find I haven’t thought about being dizzy! Which is a revelation. I still have massive lows if I drink too much or before and during my period. I’m confused…are u saying I’m not telling the truth about the gabapentin? I can assure u I am always 100% honest on here, which is why I’m not ashamed to say I was side tracked by Lyme.
This is one drug I have never tried. I wonder if I’d be OK given the almost instant depression I got from Topamax?
There are subtle shifts in how we feel all the time and no doubt you might have got a placebo effect from the antibiotics too that made you feel a little better but nowhere near to the scale you’re experiencing from a drug that actually addresses the real problem. It doesn’t seem like abx produces much in the way of side effects for many people with VM hence, I think, one of the main attractions to a Lyme dx.
Who cares if Gaba works at 100mg or 1000mg?! It works, so that’s f****** brilliant!!!
Just be happy for that person.
Dr silver v often uses low dose GABA for sleep improvement! Thank Miss m. Love ya! Xxxx
How long did it take for you to notice an improvement in the rocking and swaying? Forgive me if you answered this. When I take 100 the swaying stops and I sleep the first night. By the third night I an swaying so hard that I cannot walk. No real other side effects.
no i absolutely believe you are feeling better and that u are telling the truth. the scenario is just confusing to me but if you are feeling better then that is all that matters.
Brilliant news lizzie… Right before Christmas too.
Hope you can go that extra 10% to recovery…
Have a great chrimbo…
Thanks guys! Well I guess I don’t see why a migraine med prescribed by a consultant making an mav sufferer better would be confusing…but anyway. I did get better during the 6 months of antibiotics but as I said every time I posted it wasn’t dramatic and may have been the passage of time and not the antibiotics…I would say it took a few months on the GABA to notice improvement. Xxxx
That’s great news. I’ve been on 2400mg per day for a long time now - now decreasing down towards 1600mg…
Amazing that such a tiny dose helps, but so pleased for you!
So glad you are doing better! Dr. S seems to have really good luck with this medication. Im amazed that it worked at 100mg for you, is Dr. S surprised by this?
hi darren! i was thinking we hadnt seen u for awhile how are things? are you on gabapentin too?