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gabapentin/neurontin question

Discussion in 'General Treatment' started by xrayspex, May 30, 2012.

  1. xrayspex

    xrayspex Senior Member

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    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.....
     
  2. Xandoff

    Xandoff Michael

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    XRAY-SPEX

    I too have uber pain in my spine that feels like lactic acid. I used to feel the lactic acid in my calves when I skied moguls and it feels the same way. I take Gabapentin 600mg 3 times a day. It messes with short term memory...what was I saying? I went off all my pain meds afte r8 years last December. Life is now totally miserable. Nobody knows. I could not handle the pain meds, being a bad boy, coming up short on scripts because I had more pain. So I ended the insanity only to re-discover the dangers of chronic un-relenting pain. Depression. I have tried Lidoderm Patches 5% that help calm the CNS a bit. There has to be a better way!
     
  3. merylg

    merylg Senior Member

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    I had a short trial of 100 mg/day Gabapentin over about 2 weeks, for severe cervical spine pain. I took it about an hour or so before trying to sleep at night. It did help me get to sleep. Unfortunately I was doing a methylation protocol at the same time & I think that the combo of B12 and Gabapentin at the same time led to me having a mini-stroke-like episode at the back of my eyes (felt a pop sensation!)...then had sudden onset severe Dry Eye...which I still have :eek: This was scary enough for me to stop both the Gabapentin & the methylation protocol.

    I have since had some facet block injections either side of the spine at two levels, and this really helped break the pain cycle.
    Another thing that has really been helping is B2 (Riboflavin) at 12.5 mg 3 times a day. I noticed this help with tendon & muscle pain within a day or so of starting it. It also helped with sleep & I noticed on waking that muscles were relaxed. I have now dropped the dose to 3.125 mg once a day and have added 0.15 mg Manganese (ionized in water) 3 times a day. (Not taking any other supplements) Sometimes Manganese irritates my stomach lining. If I notice that I drop from 1 down to 1/2 teaspoon 3 times a day.

    Other things I do are Physio stretches for neck, attention to posture, task variation...lap-top computer is bit of a nightmare! Have tried Acupuncture & Chinese Massage Therapy. Prefer Acupressure & massage of trigger points. These only gave temporary relief but I still do them.

    In past I had some severe lumbar pain localized at one level, when a disc was bulging & degenerating. Needed Tramadol with Maxolon at the time. Also had facet block injections. Once the disc had completely degenerated the pain resolved. The area remains unstable as I have overall muscle weakness with the CFS. Sometimes get the Chinese Massage Therapist to work on the whole lumbar, sacroiliac area.
     
  4. xrayspex

    xrayspex Senior Member

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    thanks you guys for input

    well xandoff are u saying u are on neurontin now but no longer opiates? i am finding no need for stronger pain meds with gabapentin, its blocking my bad pains.

    however, i was so longwinded.....the thing i am most worried about is this side effect from neurontin of parasthesia--or tingling numbness cramping in my hands arms legs feet from it. what the heck causes that? I do not like it.
    its a bizarre medicine, it gets rid of my headaches and some of my killer spine pain and other bad pains and sometimes it increases my endurance and abiility to be upright longer
    but its got this creepy side effect of making my extremities sort of crampy and like just about falling asleep like when yr lay on yr hand wrong way and wake up with pins and needles.

    I have been so traumatized by this new type of frequent headache that turns into pain shooting into other parts of body that i told myself if gabapentin helped knock that back significantly i would put up with whatever side effects if could stomach it. but i just worry a bit thatmaybe its not a side effect i should ignore....so far i have decided the trade off makes it worth it.....sort of screwed either way, its like lesser of 2 evils. i have such bad luck with meds.
     
  5. xrayspex

    xrayspex Senior Member

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    one other thing I like about t tho, now that i have been taking it for awhile, it seems I am getting less chemically sensitive. one day i sensed it would be ok to have a grilled cheese sandwich, it was on sourdough bread at sundance theatre and it was delicious. normally i am gluten free. nothing weird ever happened like years ago would (been g free for -mostly-years) and friend gave me half of a rice beer and it was also delicilous on the holiday andi didnt feel sick from it next day. normally any sort of alcohol like an allergy, gut would feel pummeled next day. but intuitively sensed it would be ok. i wouldnt do those behaviors regulalry now but maybe could be fun once in blue moon. but i just dont know if these new freedoms are worth the price of creepy side effect, that i am getting sort of used to.
     
  6. merylg

    merylg Senior Member

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  7. xrayspex

    xrayspex Senior Member

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    yea thanks merylg
    i suspect parasthesia caused by being on verge of swelling, but since practically homeopathic dose its on the edge
    wonder if thats like an allergy
    funny, mentions memory problems, seems like thats one everyone gets on it and puts up with
     
  8. xks201

    xks201 Senior Member

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    Gabapentin does absolutely nothing for me except put me to sleep.
     
  9. helios

    helios

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    Neurontin (gabapentin) was an very interesting drug for me, that I am tempted to revisit, if/when my current med program finishes. My doc at the time prescibed it to me, not for pain, but as part of the Dr Goldstein (suck it and see) approach to CFS. I felt absolutely wonderful on it...for about a week, then it wore off. So calm, focused, motivated, energised and all my senses were sharper. I upped the dose and no difference, but was wary of going up & up in dose for brain meds even though some people take like 3600mg/day. I cant remember exactly what dose I was on when I felt great, but I think was 3x100mg/day. I noticed if I left a gap between doses I would get that feel good effect, and so for a while there I took it on the weekends only, but the effect was not as dramatic or as long lasting as the first week I took it. Some years later I read about it's supposed new & improved version called Lyrica, and I got a script for that with high hopes, but all that does is put me to sleep (good sleep med with no hangover effect the next day)
     
  10. BEG

    BEG Senior Member

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    I responded very well to neurontin also. I can still remember that "calm, focused, motivated and energized" feeling although it's been over a decade. It also gave me great pain relief. Nothing about the drug "wore off" for me. My only side effect was nausea, and I had to be careful to avoid mealtimes when I took the medicine which is why I eventually dropped it. When I started lyrica, I felt it was the "cadillac" of the anti-seizure medicines. It works wonderfully for me. It knocks off even my arthritic pain. The "upper" feeling makes me uneasy, but I don't believe it's addictive. I can't determine if that feeling comes from the pain relief or the drug itself, if that makes any sense. Sorry for you, xrayspex, and your troubles with the neurontin (and they sound nightmarish). I wish you luck in your search for pain relief without other sacrifices.
     
  11. helios

    helios

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    Beg, interesting you also had the same feeling. Most online experiences with gabapentin that I have read, were not raving about it. Its fantastic that the good effect continued on for you....and that Lyrica is even better. I really wish it was the same for me...I dont know why Lyrica had the opposite effect for me. How much Neurontin/Lyrica did/do you take (and times) per day?
     
  12. BEG

    BEG Senior Member

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    helios, I take 150 mgs. of lyrica once per day about mid-morning. As far as neurontin, I took the same dosage as you.
     
  13. jeffrez

    jeffrez Senior Member

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    I had the same experience as helios. At first - even from the first dose - I felt much better, calmer, clear headed, and energetic on neurontin, with doses around 100mg 3x/day. Then gradually over the next few weeks the effect kind of wore off. I started ramping up the dosage, ultimately getting to around 4200mg per day, but it never regained its initial effectiveness. I've since heard that is a fairly common experience. Now it just tends to make me feel groggy and increases brain fog.

    A psychiatrist named Jay Seastrunk (sp?) was touting gabapentin for chemical sensitivities a few years ago. I think he believed it calmed and stabilized misfiring neurons, reduced excess glutamate, etc. which he felt was the basis of the reactivity, and helped reduce the sensitivities. That's initially what prompted me to try it, but I never noticed much difference in that respect when I was on it. But perhaps you are getting that benefit - the Seastrunk theory does not seem too far-fetched, after all.

    I've never experienced that peripheral side effect you mentioned. You might want to experiment under your doc's guidance with dosage. Maybe decreasing the dose even more (if possible) or even increasing it could alleviate that reaction.
     
  14. August59

    August59 Daughters High School Graduation

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    Not sure if you know any compounding pharmacist, there is one in my area and he compounds a lot of gabapentin for transdermal application. I assume this was due to some side effects since transdermal is always going to enter the system slower. Just an FYI.
     
  15. xrayspex

    xrayspex Senior Member

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    thanks for idea, will look into that
     
  16. Ninan

    Ninan Senior Member

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    Ever since I started using Gabapentin a year and a half ago I've gotten this weird but wonderful energy. I started at 100 mg, and when I was at 200 I could get up from the bed where I had been lying for months. At 300 mg the energy effect disappeared. So I got down to 200 again, and there it was.

    After som experimentation I've realized that there is a window which goes up about 100 mg every two months. If I stay inside that window I feel so very much better. I'm now at 1100 mg and dreading the day I reach the maximum dose which is 3600 mg.

    I read at Healthrising that some doctors have found this effect:
    I also found it somewhere online a year ago, can't remember where, but someone wrote about having the same experience as I do. So, I'm looking for others. Did you try Gaba and have the same effect? Or no energy effect? How long did it last? And so forth.
     
  17. minkeygirl

    minkeygirl But I Look So Good.

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    I took Neurontin around 1999. I was on mega doses though. I though about 3200/day. I felt pretty good on it. I also used to hallucinate. I was driving one day and swore I saw the beach driving down a hill but it was the roof of a building

    I also gained about 60 lbs in 8 months. Then one day it just stopped working. Then I had to taper off and lose the weight I gained.
     
  18. Ninan

    Ninan Senior Member

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    It sure has some side effects, @minkeygirl When I change the dose too quickly I get a high fever, anger attacks and sensitive skin. And sometimes I become manic. Write three songs and ten limericks a day. Not so normal, even for me. :)
     
  19. minkeygirl

    minkeygirl But I Look So Good.

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    When I first went on it @Ninan , my doc had me up the dose 800 mgs per day until I was up to the 3200. I felt like I was smoking pot every day which is normal for that stuff since it works on the brain. I sort of liked it but I couldn't function and had to live on microwave stuff until it settled in.

    Are you not gaining any weight? My doc kept asking me if I was but my dad had just died and I was stress eating. He never told me that it caused weight gain while I just got fatter and fatter.
     
  20. Ninan

    Ninan Senior Member

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    That wasn't very smart of your doctor, was it? I think a lot of doctors underestimate Gaba. I know people who had permanent damage from stopping completely when at high doses. I only change the dose a 100 mgs every third or forth day or so.

    I have gained and then lost and I'm not sure if my meds have anything to do with it. No extreme weight gain, at least.
     

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