[eva5667faliure]

Went to pain specialist today
And because my hands and feet are so bad
The pain unbearable that I am willing to try something new
He will put me on zonagram
This is a drug my eldest child is on for her seizures
This is a different kind of family of drugs we are trying
all the other drugs also in a different class of drugs
forget proper term such as LYRICA, NORTRYPTALINE,
CYMBALTA just to name some
Point
Because my family has a history of not being able to
tolorate that maybe I won't have any difficulties
We shall see
Me

[MAT52]

Originally Posted by eva5667faliure

Went to pain specialist today
And because my hands and feet are so bad
The pain unbearable that I am willing to try something new
He will put me on zonagram
This is a drug my eldest child is on for her seizures
This is a different kind of family of drugs we are trying
all the other drugs also in a different class of drugs
forget proper term such as LYRICA, NORTRYPTALINE,
CYMBALTA just to name some
Point
Because my family has a history of not being able to
tolorate that maybe I won't have any difficulties
We shall see
Me

I understand intolerable levels of this kind of pain - I'm same with mine. I couldn't tolerate these type of drugs nor ones for my RA either. Just on steroids now but they only help with the pain at a higher dose which makes my heart pound and causes mania for me. Good luck with the new drug Zonagram - never heard of it but may be forced to try it soon so will watch how you get on.

[EnglishDave]

Dear Eva,

This is promising news. I take an anti-convulsant (Topiramate) for Cluster Headaches which definitely helps my Neuropathy, especially my face.

I found a few articles regarding your new med and nerve pain, here is an example of one very positive one:

http://www.medscape.com/viewarticle/477664

Just make sure you drink plenty of fluids while you are taking it due to risk of kidney stone formation.

Wishing you lots of luck.

Dave.

[eva5667faliure]

Originally Posted by MAT52

I understand intolerable levels of this kind of pain - I'm same with mine. I couldn't tolerate these type of drugs nor ones for my RA either. Just on steroids now but they only help with the pain at a higher dose which makes my heart pound and causes mania for me. Good luck with the new drug Zonagram - never heard of it but may be forced to try it soon so will watch how you get on.

Will keep all updated
And share the experience
Scared
But the pain is that bad
Take care of yourself
Me

[eva5667faliure]

Out there being treated for their PN issues
Like myself
Who has exhausted the family of drugs
such as NORTRYPTALINE, LYRICA, CYMBALTA

IS THERE ANYONYE ON ANTISEIZURE MEDS
THAT I AM WILLING TO TRY AS THE NERVE PAIN IS THAT
GREAT
The first try will be (Zonegran)
Low dose to start

Any input would be welcomed
Thanks
Me

[EnglishDave]

Dear Eva,

Well, as usual, there I am with you. Although I take my Topiramate primarily for Cluster Headaches, it does work well with my other meds - Lidocaine Infusions, Ketamine - to dull the Neuropathic pain. In February I had to increase my dose by 25% due to Cluster Attacks intensifying and was surprised by how much the Paresthesia in my face and the intensity of my TN attacks were affected.

What is annoying is the fact that no-one knows how or why these meds work to reduce Neuropathic pain, so it is trial and error on potentially many different ones until you find one that works. I truly hope your first rx is the answer.

These anti-convulsants come with a long list of physical side effects, but no more than we really suffer from our pain and our other meds. Just make yourself aware of the more serious ones for when you first start.

Wishing you lots of luck.

Dave.

[eva5667faliure]

Originally Posted by EnglishDave

Dear Eva,

Well, as usual, there I am with you. Although I take my Topiramate primarily for Cluster Headaches, it does work well with my other meds - Lidocaine Infusions, Ketamine - to dull the Neuropathic pain. In February I had to increase my dose by 25% due to Cluster Attacks intensifying and was surprised by how much the Paresthesia in my face and the intensity of my TN attacks were affected.

What is annoying is the fact that no-one knows how or why these meds work to reduce Neuropathic pain, so it is trial and error on potentially many different ones until you find one that works. I truly hope your first rx is the answer.

These anti-convulsants come with a long list of physical side effects, but no more than we really suffer from our pain and our other meds. Just make yourself aware of the more serious ones for when you first start.

Wishing you lots of luck.

Dave.

Hi my friend
Wishing all be well

Wondering how long did it take for you to notice effect
You know my fear of withdrawal
My eldest is on the same drug
She is at a danger level 1800mg in a day
She is my epileptic baby
Jeez the ailments we all suffer
You take care
Prayers always
Love
Me

[EnglishDave]

Dear Eva,

At the time of my original rx of Topiramate I was shattered by up to 8 Cluster Headache attacks every day, and had suffered for 10 years thinking they were TN related as I didn't know what they were. I was just so overwhelmed with relief when the attacks were cut by 75% I didn't quantify any other improvements, neuropathic or TN. I remember the decrease in intensity of TN was gradual.

When I increased my dose by a massive 25% in February I noticed neuropathic pain improvement immediately. Quantifying it, I would say it adds an extra 1-2 points on my pain reduction levels after taking all my meds. You know the multiple neuropathic and musculoskeletal issues I have, and this means I can be around a 4-5 with all my meds as opposed to a 5-6 or higher before the increase. This may not seem much, but to me it is the difference between living and barely functioning.

Of course, factor in Cluster or TN attacks and all numbers are meaningless, but I have both for my Sins.

Dave.