I am a 54-yr-old female. In my twenties I was diagnosed with idiopathic left temporal lobe epilepsy, after a grand mal convulsion. An MRI showed white spots in my brain, but my neurologists couldn't relate that to the convulsions or partial seizures I had. My partial seizures took the form of thoughts that spun out beyond my control, like a dream you recognize but don't remember, and lasted half a minute or so. For decades I took anticonvulsants--Dilantin, and when I was ready to get pregnant, phenobarbitol (I know, now a neurologist would advise the opposite switch, away from phenobarb, but luckily I was on a low dose and my kids have been part of a study and there doesn't seem to have been any effect). Eventually I switched to Neurontin (gabapentin), which because it wasn't using up all my liver enzymes, allowed me to drink wine again, a huge relief. I gained weight, and quit sweating, except when I did perspire it was overwhelmingly smelly, and my hair thinned some, but basically the trade-off seemed worth it. I did have a couple of weird visual-field disturbances followed by migraines, but I had a migraine three days before my period every month and ibuprofen took care of it, so I chalked that up to a development in the epilepsy. Plus the gabapentin helped my restless legs.
I took gabapentin every 8 hours. found that if I stayed up late and took my gabapentin at 1 in the morning instead of 11 p.m. I would have trouble sleeping. During a vacation in France, when, because of the time difference I was effectively taking my gabapentin at what would have been 1 a.m. at home, I began to have horrendous adrenal surges in the middle of the night. I would wake up sweating, with my heart pounding, and worried I was having a heart attack. This went away as soon as I returned home (and began taking the gabapentin at 11 p.m. again).
Then about four years ago, after I'd been taking gabapentin for five years, my health collapsed. I developed rashes, my throat would swell in reaction to all sorts of foods, cold water, perfumes, chemical odors. Hot and cold water could trigger hives. Allergies to dust mites and mold became much more intense. An hour of hitting tennis balls would leave me so tired I could barely function. I had ringing in my ears and tingling and numbness in my extremities. I saw an array of allergy specialists who ruled out many specific allergies. I was tested for mastocytosis, and was told I had an abnormally high level of mast cells, but not mastocyctosis.
About the same time, my children were diagnosed with antibodies to gliadin, and the family stopped eating wheat and other foods with gluten. I also stopped eating dairy products, nuts and chocolate (on the theory that if I developed an allergy to chocolate life would be unbearable). I was treated to get rid of helicobactor pylori.
While all this was going on, I began tapering off on the Neurontin. Every time I had worked my way off anticonvulsants in the past, I had had partial seizures with increasing frequency, and I hadn't had even one partial seizure in months, so I felt OK trying to reduce the dose. My neurologist maintained that the problem could not have anything to do with the Neurontin, since it didn't chemically interact with anything in the body. I couldn't figure out what else was left to change.
Over a period of several months I worked my way down and finally quit the Neurontin. The day I didn't take the last pill, I began sneezing uncontrollably. After several hours I was a bit worried and took another 400 mg., and the sneezing stopped--and started again as soon as that dose wore off. Luckily the sneezing went away after a day or two. But then the night sweats began . . .and my tooth grinding, always a problem, got so extreme that I was starting to break apart my teeth--I have several crowns to show for it. Of course when you're my age and female, night sweats are going to be diagnosed as perimenopausal, but I've had all my hormone levels tested--they're not in the perimenopausla range yet--plus I've tried estrogen replacement, to no avail. The night sweats began the week I stopped taking gabapentin.
I had a 48-hour EEG a couple of weeks after quitting the gabapentin and there were no spikes--a few slow waves, but I have had no partial seizures, no neurological events at all in the intervening four years--the epilepsy has gone. I suspect the epilepsy was the result of an undiagnosed wheat allergy. There's something called gluten ataxia, in which lesions in the brain cause physical jerkiness, and there were those white spots on my brain MRIs . . .Although I tested negative for gluten antibodies, I'd been avoiding wheat for months by the time I was tested, and I don't think my cupcake binge the week of the test was enough to guarantee a good test result. The canker sores (apthous ulcers) in my mouth disappeared completely when I quit eating wheat, as did the intermittant itchy spots on my arms and legs. My face clears up nicely when I avoid dairy--and without dairy I have no migraines. I've found I need to keep foods like corn, rice, almonds, and sesame down to only once a week, and I avoid soy entirely. If I eat those foods too often I get noticeable brain fog and it's like someone switched off my thyroid with a switch--the hands and feet go cold, then later a hot flash. Chocolate seems to be OK, thank heavens.
When I quit the gabapentin, I found myself craving magnesium-rich foods--raisins, nuts, beans. The online research I've done suggests that since gabapentin works by binding to a calcium receptor to prevent electrical signals between neurons, and since magnesium binds to the same receptors as calcium, years of gabapentin use could lead to a calcium and magnesium deficiciency. And magnesium deficienly would explain a lot of what happened to me when my health went haywire. I now take about 250% of the RDA for magnesium (approx. 675 mg. elemental magnesiuim) per day, and some calcium, though I don't always make the RDA there. So many things have improved. The dust mite allergies have receded noticeably, the seasonal pollen allergies are pretty much gone, the tooth grinding is better. Best of all, the adrenal surges at 2 a.m. stopped as soon as I began taking elevated magnesium doses. Now most nights when I wake up with night sweats I can at least get right back to sleep. The leg cramps are gone until I try to taper down the magnesium to 400 or 500 mg. elemental and then they return.
So here, at last, is my question: Has anyone else had similar experiences with gabapentin, or know anything about it in relation to magensium deficiencies? So many of the gabapentin side effects are consistent with hypothyroidism, but I can't find any research in that direction. And for me at least it's clear that the gabapentin was suppressing my adrenal system, which would surge out of control if the dose of gabapentin was a couple of hours late--which makes sense since I think magnesium counterbalances adrenaline, doesn't it, in that endocrine loop?
I apologize for what a lengthy post this is. I'm new to MedHelp and am not sure of the protocol of posting. Thanks for any advice.
This discussion is related to
Neurontin woes.