Hello,
Have a 15 year old daughter with CMT that was just prescribed Gabapentin. Just curious if anyone can give me their opinion on how this medication is beneficial to patients with CMT.
It made a world of difference when I started taking it. My doc gradually increased my dosage so that I wouldn’t experience as much sleepiness.
With CMT I've found medications can be like some foods with CMT'rs we do not process or metabolize the same; So, I've learned to be cautious and ask for samples before filling scripts. Most anything for CMT "treatments" is merely asymptomatic in nature; We can maybe minimize pain or help some function but the best thing I can advise based on my own experiences is make note of how things are affecting you on a daily basis and then keep a journal and reflect back to see what possible affects, both good and bad, the medicine can be having on your personal situation. And until I know my body is okay with it I try to take half dosages until I get it into my system ok. I did not do well with Neurontin ( Gabapentin) I do occasionally use Tramadol (for spasms due to nerve pain and stress) but again I don't take it unless I intend to be very sedentary.Also, for some those kind of drugs can be addictive and you cannot just suddenly stop taking it.
I do wish you well in finding help I understand nerve and muscle pain and do suffer from severe bouts at times but i find massage therapy has been the most beneficial!
CM
"Less serious" side effects may include: These are things we already have trouble with so I don't take these kinds of drugs unless I want to spend allot of hour sin bed!
- dizziness, drowsiness, weakness, tired feeling;
- nausea, diarrhea, constipation;
- blurred vision;
- headache;
- breast swelling;
- dry mouth; or.
- loss of balance or coordination
-
Less common side effects of Neurontin may include:
Suicidal thoughts or actions, with symptoms such as thoughts about suicide or dying; attempts to commit suicide; new or worse depression, anxiety, or irritability; feeling agitated or restless; trouble sleeping; panic attacks; acting aggressive, being angry, or violent; acting on dangerous impulses; an extreme increase in activity and talking; or other unusual changes in your behavior or mood.
Changes in behavior or thinking in children 3-12 years of age, with symptoms such as emotional changes, aggressive behavior, problems with concentration, restlessness, changes in school performance, and hyperactivity.
Serious or life-threatening allergic reaction with symptoms such as a skin rash, hives, fever, swollen glands that do not go away, swelling of your lip and tongue, yellowing of your skin or the whites of your eyes, unusual bruising or bleeding, severe tiredness or weakness, unexpected muscle pain, or frequent infections
l take a low does in the evening only. l think it has helped some but not sure how much. l also have a script to gabapentin in cream form with lots of other goodies in it. lt helps a whole bunch with the nerve pain in my feet.
~Tami
Hi k,
Was this prescribed for nerve pain?
I don't have CMT, I'm just a helping hand here, but do have nerve pain from spinal autoimmune arthritis and Gabapentin and Lyrica can be very beneficial for the nerve pain. It should be started in low doses and gradually increased. This helps to minimize any side effects, but should it be discontinued, it should be decreased slowly, not stopping all at once, by the prescribing MD.
My best advice is to keep an eye on her and ask her often how she is doing on the med, if it's helping.
Sending my best to you and your daughter,
SK
I take 2400mg a day. It takes a while to build up in your system, but that is the way it works. With a regular dosage, it maintains a level of reduced nerve pain. I've not had any side effects, personally. I've also been taking that dosage for a few years now. without it, I get a lot of the pins and needles sensation/pain.
Never heard of this, what is it suppose to treat? I will look it up though...let me know if it helps. My son is 15 and diagnosed at 12. We both have CMT type 1A.
Take care
Thank you all for your feedback. She is having and uncomfortable feeling in her toes mainly. The tingling , numb, annoying sensation or lack of. I just get worried since she is so young. I also have 1A but have never been prescribed this. They want her to start off slow, 100 MG three times per day.
Each person reacts differently to any med. I have taken Gabapentin and Lyrica. The Gaba had to be discontinued because of dizziness, so I take Lyrica. The biggest problem with Lyrica for me is swelling of hands and feet and weight gain.
Hopefully, your daughter will not experience anything but relief!
My neurologist prescribed Gabapentin for me when I was diagnosed, and it helped tremendously. To minimize side effects, he slowly increased the dosage over an 8 week period (started with 100 mg at bedtime until I was eventually up to 300 mg 3 times a day).
Sorry I didn’t realize I had posted last week on this same thread. Previous comments didn’t show on my phone until after I posted this time. Please feel free to delete my duplicate post (since I can’t figure out how to do it).
It's prescribed for nerve pain.
I think the cream might be a great alternative as our skin is the biggest organ in our body and would absorb right where the pain areas would be! i might actually look into that myself1 Thanks for the great comments and suggestions! I've also heard of a magnesium cream that helps with the muscle pain and cramping which works on same principle. I've learned also, that heat and cold applied alternated can be beneficial as it startles the brain into referral nerve conduction thats stimulates other sensations to trick it to cancel out the pain. Any time you use this method start and end with cold.
CM
Hi K,
How is your daughter doing on the Gaba? Is it helping her?