[baba222]

Hello,

If you have sensory SFN and are on lyrica or neurotin and are one of the lucky few who have had regeneration,

was it best to maximize the dose to experience the least pain or try to dose down and document the symptoms.

I have not had full pain control anyway, but every now and then can "take" the symptoms. But when try to get off, symptoms come back full force.

Any suggestions?

[zkrp01]

Originally Posted by baba222

Hello,

If you have sensory SFN and are on lyrica or neurotin and are one of the lucky few who have had regeneration,

was it best to maximize the dose to experience the least pain or try to dose down and document the symptoms.

I have not had full pain control anyway, but every now and then can "take" the symptoms. But when try to get off, symptoms come back full force.

Any suggestions?

Hi Baba, I don't know if regeneration has occured, perhaps a little more strength is evident. But among the hundreds of threads here I remember someone writing that after the passage of time the pain will be replaced by something else. I feel fortunate that that I no longer take hydrocodone or Gabapentin. I still have pain but not bad enough to make me dangerous while driving.(Gas and brake pedal problems). I know that you are still early on with this affliction. If you "dose down" and pay a hefty price, perhaps it is not time yet. I take Tylenol w/codein and they are not nearly as analgesic as I would like. I can forget a 7:00am pill and not realize it untill around noon. Perhaps a persons tolerance changes as well. If you try and fail, it is not a failure on your part because you are still seeking, pushing, experimenting, and owning your life. Try again later, the outcome may be different. Good luck, Ken in Texas.

[hopeful]

Hi as Ken has said you are very new to all of this. I'm not sure you should dose down already. Especially, if the symptoms come back full force. Give yourself some time and a break from the pain.
I know many people here try to get off all meds but not everyone can obtain that. Go my what your body is telling you. It sounds like your saying the Gaba is working for you. I don't know if anyone ever gets full pain control. I just told my rheumo the other day that I now live with a daily pain level of about a 5. It sure beats the level 10 days all the time. I still get those days but at least now it isn't everyday.
Not sure if it's fortunate or unfortunate but I think over the years I have learned to live with the pain. In the beginning I was so stressed over it and know I accept this is part of my life and probably always will be.

[en bloc]

I am not sure why you are trying to 'dose down' when you don't even have continuous pain control. Also, don't forget the both meds you list have to be tapered slowly, so you might be adding withdrawal syndrome to your pain (which will increase pain levels).

Is your doctor suggesting or encouraging this 'dose down' and getting off your treatments? If so, it's time for a new doctor and another opinion.

[baba222]

Originally Posted by en bloc

I am not sure why you are trying to 'dose down' when you don't even have continuous pain control. Also, don't forget the both meds you list have to be tapered slowly, so you might be adding withdrawal syndrome to your pain (which will increase pain levels).

Is your doctor suggesting or encouraging this 'dose down' and getting off your treatments? If so, it's time for a new doctor and another opinion.

No suggestion of dosing down, just dosing up for the doctor.

I just want to be off. But I cant sleep without the medication.
Thank you for your reply.

[madisongrrl]

Originally Posted by baba222

No suggestion of dosing down, just dosing up for the doctor.

I just want to be off. But I cant sleep without the medication.
Thank you for your reply.

I'm in the same position as you are in. I'm on 1800 mg of gabapentin and 10 mg of nortryptline each day. The neuro wants to take me up to 2400 mg of gaba a day. I don't want to be on anything, but sometimes we have to conceded and realize that being in pain is counterproductive. I totally understand how you feel though.

[en bloc]

Originally Posted by baba222

No suggestion of dosing down, just dosing up for the doctor.

I just want to be off. But I cant sleep without the medication.
Thank you for your reply.

.

It's better if you can treat the underlining cause...but as you well know, that is not found in MANY cases. Therefore, you must choose whether to treat or live with it. I understand not wanting to be on medications. I lived with the pain for years and it was difficult to start treating and even more difficult to end up on narcotics for it. But quality of life is the determining factor...and that is your choice alone. You are very new to this and it will take time to find the balance that is right for you.

[Idiopathic PN]

Originally Posted by hopeful

Hi as Ken has said you are very new to all of this. I'm not sure you should dose down already. Especially, if the symptoms come back full force. Give yourself some time and a break from the pain.
I know many people here try to get off all meds but not everyone can obtain that. Go my what your body is telling you. It sounds like your saying the Gaba is working for you. I don't know if anyone ever gets full pain control. I just told my rheumo the other day that I now live with a daily pain level of about a 5. It sure beats the level 10 days all the time. I still get those days but at least now it isn't everyday.
Not sure if it's fortunate or unfortunate but I think over the years I have learned to live with the pain. In the beginning I was so stressed over it and know I accept this is part of my life and probably always will be.

Hopeful,

I realize that throught the years living with the pain is still difficult to accept ...but there are things I just have to live with it. I live with an everyday pain but not as bad as it used to be. I still get those 10-level pain, but fortunately, not as often as it used to be. I am not actually sure if the pain has gone down or my tolerance level has gone up. Either way, I need to move on and reach out for a piece of joy in life, when I can.

Mary