Hi, I have been experimenting with the liquid version of this on and off the last year or so, but mostly this year, since spring end of winter on and off, now mostly on, and can tell it will be a drag to go thru the "off" if decide to. I had been intrigued by it since read Goldsteins stuff about it 10ish years ago.Tried the tablet form like 10 years ago, but it was way too strong and didnt feel good just doped up so stopped quickly.
Last year got liquid form and took small amount like 1ml for few days and instantly improved, felt more "normal" like being able to stay upright longer and go out with friends without feeling distracted by pain and wanting to lie down. But unfortunately started getting dysphagia and air hunger so stopped after couple weeks of on and off.
So trying again this year in even more micrscopic dose, like .10 to .30 ml a day or few times a week for few weeks and then off a couple weeks and now on mostly the last few weeks and last week or 2 probly daily mostly. What I like is it helping prevent killer headaches and associated stinging killer pain that would go down my spine and stop my life....these had increased in last year after rootcanal was done inadequately and had to be redone year later (that seems to be ok for now). I have had cfs/fm sort of stuff for over 20 years and been thru my share of headches and pain but this was new level and debilitating and several times a week. Its great to have that pretty well taken care of...I have to still be careful in sun and heat, better to avoid cus triggers, going to be a long summer, sigh.
anyway, it also seemed like it was again allowing me to be upright more, I think it helps the neuro stuff, problems with spine, neck nerves that might make one uncomfortable while mobile. HOwever, it also can sometimes make me feel oxygen hunger, as I think it lowers my blood pressure. Another symptom I hate is that it may be causing slight swelling, I noticed it when I had taken larger dose in past (still small relative to norm tho) of finger looking swollen and ring not fitting, on lower dose not as much obvious swelling but throat still tight threaten dysphagia but avoid things like carrots mostly soft foods cus of past dental and narrow throat But also cramps and numbness in extremities, hands, feet arms and legs, its worse lying down and in mornings.
I havent figured out best time of day to take it. experimented. sometimes its stimulating others sleepy, not consistent. most of the time it in general is helping me sleep better and I go to bed earlier and sleep longer usually (only 7-8 hrs whereas before was waking up after 4-5) sometimes it still doesnt work and have to take benadryl with it at night.
it also seems to be dulling low back pain that had become chronic in last year which is nice for going to movies, as sitting was hard. was used to neck bugging me all these years so was a drag to have low back/sacrum hurt too. not out of the woods yet with it.
So I feel uneasy to put up with these pains in my extremities, its like I am trading no headaches and debilitiating pain for an annoying less debilitating different pain. I just question if that is safe, what is causing that pain. I see that can be a side effect of topamax, parasthesia, and neurotin supposed to treat that not cause it, but i didnt have before gabapentin and every time i stopped taking it it went away, now that I am taking it regularly the parasethesia is daily, notice in morning and when lying down.
bummer is it will be hard to go off now as its the longest have been on it, its very sticky with my brain, even when on it for a few days i would feel rebound headaches or weird mood stuff going off. I felt tongue tied and malaise when didnt take it by a certain time the last few days.
It also seems to contribute to hypoglycemia. It must be a hypo med, lower b/p and sugar.
anyone have experience with mcs and doing the goldstein sort of approach, playing with small doses and figuring out wht side effects mean? I wonder what Goldstein would recommend now that we know that gabapentin does some good stuff for me but what does bad stuff mean? I don't tolerate ssris snris stimulants but do crave black tea often and sometimes it worsens the air hunger i can get on neurontin, but often briefly helps. Normally when i feel air hunger lyng down helps alleviate on gabapentin its painful to go thru that process as feeling of pressure internally increases when i lie down but still feel need to do it intermittently.....
Last year got liquid form and took small amount like 1ml for few days and instantly improved, felt more "normal" like being able to stay upright longer and go out with friends without feeling distracted by pain and wanting to lie down. But unfortunately started getting dysphagia and air hunger so stopped after couple weeks of on and off.
So trying again this year in even more micrscopic dose, like .10 to .30 ml a day or few times a week for few weeks and then off a couple weeks and now on mostly the last few weeks and last week or 2 probly daily mostly. What I like is it helping prevent killer headaches and associated stinging killer pain that would go down my spine and stop my life....these had increased in last year after rootcanal was done inadequately and had to be redone year later (that seems to be ok for now). I have had cfs/fm sort of stuff for over 20 years and been thru my share of headches and pain but this was new level and debilitating and several times a week. Its great to have that pretty well taken care of...I have to still be careful in sun and heat, better to avoid cus triggers, going to be a long summer, sigh.
anyway, it also seemed like it was again allowing me to be upright more, I think it helps the neuro stuff, problems with spine, neck nerves that might make one uncomfortable while mobile. HOwever, it also can sometimes make me feel oxygen hunger, as I think it lowers my blood pressure. Another symptom I hate is that it may be causing slight swelling, I noticed it when I had taken larger dose in past (still small relative to norm tho) of finger looking swollen and ring not fitting, on lower dose not as much obvious swelling but throat still tight threaten dysphagia but avoid things like carrots mostly soft foods cus of past dental and narrow throat But also cramps and numbness in extremities, hands, feet arms and legs, its worse lying down and in mornings.
I havent figured out best time of day to take it. experimented. sometimes its stimulating others sleepy, not consistent. most of the time it in general is helping me sleep better and I go to bed earlier and sleep longer usually (only 7-8 hrs whereas before was waking up after 4-5) sometimes it still doesnt work and have to take benadryl with it at night.
it also seems to be dulling low back pain that had become chronic in last year which is nice for going to movies, as sitting was hard. was used to neck bugging me all these years so was a drag to have low back/sacrum hurt too. not out of the woods yet with it.
So I feel uneasy to put up with these pains in my extremities, its like I am trading no headaches and debilitiating pain for an annoying less debilitating different pain. I just question if that is safe, what is causing that pain. I see that can be a side effect of topamax, parasthesia, and neurotin supposed to treat that not cause it, but i didnt have before gabapentin and every time i stopped taking it it went away, now that I am taking it regularly the parasethesia is daily, notice in morning and when lying down.
bummer is it will be hard to go off now as its the longest have been on it, its very sticky with my brain, even when on it for a few days i would feel rebound headaches or weird mood stuff going off. I felt tongue tied and malaise when didnt take it by a certain time the last few days.
It also seems to contribute to hypoglycemia. It must be a hypo med, lower b/p and sugar.
anyone have experience with mcs and doing the goldstein sort of approach, playing with small doses and figuring out wht side effects mean? I wonder what Goldstein would recommend now that we know that gabapentin does some good stuff for me but what does bad stuff mean? I don't tolerate ssris snris stimulants but do crave black tea often and sometimes it worsens the air hunger i can get on neurontin, but often briefly helps. Normally when i feel air hunger lyng down helps alleviate on gabapentin its painful to go thru that process as feeling of pressure internally increases when i lie down but still feel need to do it intermittently.....
This was scary enough for me to stop both the Gabapentin & the methylation protocol.
