Medications and side effects

Side effects of medication vs. the benefits of the medication was brought up in another topic and rather than change the direction of the original post, I thought I would start a new discussion.

For those of you who take medications to treat your ES symptoms, what medication do you take and what side effects (if any) do you experience from that medication?

Neurontin/Gabapentin: Decreased my nerve pain by about 50% but the side effects were unbearable.

- sweats, nightmares, foggy, chest tightness/pain, tingly/numb arms, anxiety

Was on 300mg/ 3xs daily

Christian, this is my fear...that the side effects are going to be worse than the symptoms! Do you take any medication now or do you just "deal with it"?

Christian22 said:

Neurontin/Gabapentin: Decreased my nerve pain by about 50% but the side effects were unbearable.

- sweats, nightmares, foggy, chest tightness/pain, tingly/numb arms, anxiety

Was on 300mg/ 3xs daily

I took neurontin for quite a while, probably about a year, ranging from 300 mg to 500 mgs (I think - can't remember exactly). I didn't have any side effects that I remember, but it did practically nothing for my pain.

I tried several medications - topamax, oxcarbazepin, celebrex, and several others that I don't remember the names. The topamax seemed to make my pain worse and I felt very sick. I tried twice and could never handle it longer than a day. The others didn't really seem to have an effect on me. I also tried oxycodone, but it didn't have hardly any effect on the nerve pain.

I finally was given nortriptyline and that seems to work best for me. It doesn't eliminate the pain, but makes it somewhat easier to take. I started on 10 mgs and worked up to 150 mgs. At the higest dose, my vision was getting blurry and I had a bad taste in my mouth. Now I'm trying 100 mgs. I don't seem to be having a problem with the side effects, but it's not as effective for the pain control.

One thing I've discovered is that medications really vary person to person for Eagles pain. Some people can tolerate meds another one can't at all. I think there have been quite a few people on the forum over the years that used neurontin successfully.

When I had glossopharyngeal neuralgia I took baclofen and it did a pretty good job of making the pain manageable.

I am looking for surgical alternatives as my worst symptoms are nerve pain and I am not "dealing with it" very well. It is diminishing my quality of life. I have GPN (throat and ear pain) and possibly TN (facial pain). I have been dealing with this for 15 years and am afraid it is too far gone. I am not currently taking anything but am meeting with a pain clinic at the end of the month. I have tried other meds in the past that have not helped me.....Cymbalta, Lyrica, Amitriptyline, to name a few.

The medication I took for the pain in my throat and nerve damage from a dental implant was Amitriptyline, I would take it at night a half hour before going to bed. It helped me get a good nights sleep and I had no negative side effects. After having the surgery removing my elongated calcified styloid, surgery removal is the best alternative for me to dealing with the pain. I just had the surgery a few days ago and realized how much pain this caused me.

Pleased that your surgery has gone well, Snowlady!

Suzy, I take amitriptyline in a low dose for nerve pain, and found it has helped me with that (maybe my pain was not as bad as Christian's), and it has helped me with sleeping.

I'd tried codeine before that, and it didn't help anything.

I have been taking Carbamazepine (Tegretol) since November. I knew I had TN but also had sensation of something in throat constantly. My neurologist told me this was from TN. I thought he was nuts.The meds started working within HOURS and after about 2 weeks, the sensation in my throat was GONE. This med is not for everyone. It was difficult to get used to and for about a week I didn't think I would be able to continue taking it, but it did slowly get better. I still have minor pain issues, but absolutely NOTHING like before.

Thank you all for your replies! It's true that we all have different levels of pain and we all react differently to medications. Apparently there's a lot of trial and error with finding what works for each individual and there is definitely not a one size fits all solution to this condition. If only it was that easy...