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AVM Survivors Network

Gabapentin someone here using it for neurophatic pain?

Hello , is anyone here using Gabapentin for neurophatic pain? Does it work? Wich side effects do you notice? I was trying to solve things with time and acupucture before surrending to medication…but I think it´s time to get some opinions…anyone ?

Hiya Rita

I use a combination of gabapentin and amitriptyline. Sometimes have a hangovery feeling like n the morning if I take medication too late. But I do get a half decent sleep which makes s wonderful !:smile: After many months of restless nights with pins and needles and pain.

Mandaayr xx

Hi Mandaayr! Thanks for your answer, I started taking one pill at night, I do sleep well and without pain, the problem is during the day , sometimes my shoulder and arm hurt so much that I simply don´t leave home…let´s see if it works!

Hi Rita
Fingers crossed for you
Amanda xx

Already stopped with Gabapentine…really I can´t function with that …the pain doesn´t really goes away and mentally I can´t deal with the effects…I went for an appointment with the Physiatrist and since the burning sensation on hand and foot had stopped he suspects it´s not neurophatic pain anymore and said he was going to prescribe me phisio for tendinitis…the truth is that i feel more and more sad and desperate unable to return to a funcional life…My hope is that I had the pain in the hand when i didn´t felt it, and now i i´m regaining sensation on it and pain went away, will it happen the same when i start to feel the rest of my arm? I´m very confuse, tired and mentally unstable with all of this situation…

Hi Rita I am sorry that the medication did not help your symptoms. During the day my pins and needles and other symptoms are there at different degrees of discomfort. I am not sure about the tendinitis, but maybe that is more treatable than neuro pain ? It does get you down as it puts restrictions on your life. I have had to change from a nursing job I love to a temporary admin post. I try to stay positive and take each issue as it comes. Everyone has so many individual symptoms and different ways it has an affect on their day to day living. I am here and I look at others on this site that have been through so much more than me and try to take some of their hope and positivity into my own life. Reach out to everyone on here as they understand how physically and mentally we are affected. Hopefully by the time this reply reaches you that you have some improvement. My positive thoughts are with you and I am a good listening ear xx take care Amanda

Yes- I have been on it for about 6 years it is safe your stomach only absorbs so much I was on 1200mg 3x a day and after my shoulder surgery my ortho gave me another 600 to take mid day-

Hello Rita
I had a massive stroke a few months before my avm formed that killed my thalamus and impacted my basal ganglia
I lost my left side movement, speech, ability to do simple math at first but it all came back and some how now my thalamus is fine…
What I think helped me is taking coconut oil daily in my tea or coffee. We need fat and protein for our brains to heal. I started our with 1 teaspoon and worked up to 3 teaspoons a day. You can also buy it in pill form.
I still have weakness on my left side but only I seem to be able to tell and my doctors.
I am in constant physical therapy for it and also because I have something called ehlers danlos which is a collagen disorder.

Also having something like arnica gel or oil can help naturally with inflammation and a tens unit to help wake up the nerves, there is another machine you can wear like a tens unit when you are doing physical therapy called EMS unit sometimes you can find a unit that is both-

Here is some info - http://www.tensunits.com/blog/2016/08/16/whats-difference-tens-ems/

I got mine off of overstock.com they have great prices- my insurance paid over 1K for just a tens unit…

Hugs
Angela

Thank you so much for your support, it really means something to me! I just see people saying that I look so fine and they just don´t know and don´t understand this part and what it is to deal with pain everyday! I stopped with acupucture and every medication and restarted doing phisio, I´m feeling better somedays and I admit that I had some days (like 2 or 3) for the first time since the avm burst that I almost felt any pain (at least the burning sensation ) now is just a super numbness that it makes harder to walk but it´s better than the pain. I notice that the weather influences a lot too!! When its cloudy or raining pain is so much worse…do you see a relation too? Thanks and again thank you so much for your support!!

Hi Angela4!! Thank you so much for your support! I admit I never tried to look what in terms of nutrition is better or could help my brain healing and give me back my sensation and free of weird sensations and pain! I m receiving some very good massages from my OT and he puts an oil, and I will buy some coconut oil pills and take it! Thank you so much!

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Hi Rita
Sometimes people have to see something wrong to process it. Yea the numb/heavy feeling makes me feel like I am going to trip over. Do you notice that sometimes the the abnormal feeling makes you feel like when walking your foot feels like it’s turning in ? It’s hard to describe.
I sometimes feel that the weather has an impact on my symptoms too. Just maybe the impact on how I am feeling too. I also think my hormones make all my symptom worse. Hope th physio is helping with your symptoms and pain
Amandaxx

Do you think this is going away or I have to start putting in my mind that this is the sequel and try to live life with this?
(yes I never feel the foot on the floor or at least totally it´s super weird and causes a huge disconfort)

Methadone. 5mg. Did nothing.

Medical marijuana stops all the pain.

Hi Rita

I can only go on what my own symptoms are and what I read on here but I don’t think the numbness etc will just go away, unless there is some sort of intervention treatment. I suppose it’s about adapting to any change and if there is something to try then give it a go. I have lived with some of the symptoms that long that they are just me. I try to take as little medication as I can and my main focus is getting a nights sleep. This allows me to function and be able to continue working. Some days I am am so fatigued and symptomatic but just grateful that I am able to work through this compared to some. Today was not a good day for walking and I felt my balance off all day and that weird turned in foot feeling where I seem to walk with a slight limp.
I have never tries any oils but my AVM is in my spinal cord so not sure how that may help ? I would probably look into it more for me but very willing to try anything that may help
Amanda xx

@RitaF
Dont give up hope- Keep working. I also use something called a fascia blaster which is the same torture as those foam rollers except you dont have to roll on the ground which for me is hard to get back up cause I have problems with my shoulders and my left side is still super weak from my first stroke.

Do you notice that your numbness is better after your OT massages you?

also get your b12 tested- it could be low and causing some of your symptoms my doctors told me it should be around 800 - mine was 100 when tested this was way before my avm happened but for some reason I think related to my ehlers danlos I dont absorb it by eating it so I have to take daily supplements which has really helped my numbness and tingling in my feet and hands
I take the Methylcobalamin b12-
This is the most easily utilizable and active form of vitamin B12. Methylcobalamin converts the amino acid homocysteine to the amino acid methionine that helps prevent heart disease. It easily crosses the blood-brain barrier (a highly selective permeability barrier that separates the circulating blood from the brain extracellular fluid) and protects the brain cells. It contributes essential methyl groups needed to start the body’s biochemical reactions and for detoxification.

Dont take it if you b12 levels are fine cause the same issues can happen if you have too much b12-

Hugs
Angela

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Hello Angela! Thank you so much for your kind words and support, its good to have someone that understands us and transmit such a good energy like you :sunny: I will buy the vitamins and take them, I m up to anything I have a life to go and live! One thing that I noticed is that the less I do with the affected side the less pain I have so I can´t say the massages help…

I wish it was legal here in Portugal , unfortunetely not an option!

It may be one day. It isn’t legal in England but I score it.

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Ask in any bar. Good luck.

Hello all! I had an appointment with the neurosurgeon last week, basicly he admitted Gabapentin does nothing!! Now what really “remains” is the feeling of having a leg of wood , do you know this feeling? When it´s good it´s a great day and I walk a lot and have finally days in peace, when it´s bad I can´t leave home because it hurts so much…The doctor prescribed Keppra and I only took it during a day in wich I basicly slept and felt that feeling of being under drugs…and honestly now I ask myself “Is it Keppra like Gabapentin?” are we just taking placebos ? Is this going away or get smoother with time? I´m going to 11 months of gamma knife is this still a critical period and lot´s of changes can happen?
Thanks for your opinions!