[bubblegumgiddy]

The pain is worsening. The tingling has spread throughtout my hands and feet. It seems as though the increase of neurontin isn't doing a thing. The nights are tragic. I get such little deep sleep that the days are getter shorter. I can cope somewhat in the morning but by the early afternoon, I ama basket case. I am tryin to nold down a part-time job. But with great difficulty and with alot of prayer.
I that bentithiamine , as was suggested by a friend but [I] am still as lethargic as ever.
I don't know how to function with this disease and how to live with this pain.
I am taking oxycodone in the evening that gives me some relief. I tried vicotin and that did absolutely nothing.
Does anyone have any advice???

[COLBEYMOORE]

Bubblegum I know what you are going through. I take Loratab for the pain but now that doesnt work just keeps me up. My husband massages my feet with Icy Hot that helps takes away the cold and burning sensation for awhile. I feel your pain you are not alone. I take Gabapentin (generic Neurontin) and I find it helps a little.
This disease is so frustrating to have to describe it to someone whodoesnt have it is so frustrating because the pain varies from one to the next so it is hard to describe. I hope you find relief for your pain

[Leesa]

Hi ~ Please ask your doc if you can try TOPAMAX. It works just like Neurontin, but it doesn't make you feel lethargic, or loopy, and it doesn't make you gain weight or retain water. In fact, a percentage of people lose weight on Topamax. I've been on it for probably 8 years now, and I've not had any side effects like I did on Neurontin. I've also been on the same dosage for the whole time. I'm on 400mg. per day and it has taken away all the tingling, burning, stinging, hot-poker type pain in my legs. It's been a life saver to me.

Just wanted to let you know about it, cause it really does work better. Ask your doc about it. All he can say is no. I hope he doesn't. God bless. hugs, Lee

[dahlek]

If less than a week? Call your neuro and set up an appt for later this week! DO NOT let him/her palm you off to an ER! MAKE them take crucial tests that could help in getting an ultimate diagnosis.
MAKE them measure how much you are losing in sensitivity! IF they refuse? Set yourself up for an emergency appt w/another doc! THIS IS NOT a thing to be laid back about? Throw a sweet mild temper tantrum to your doc! You need to be evaluated and soon! THIS WEEK!
Please if this doc won't listen? Try another one.... If none of that works? Then the ER is your option and I hope and pray you get a LIVE resident when you arrive.
Please let us know how you are doing from now on as when you can? I am worried, I've been there! 's!! - j

[daniella]

I agree with dahlek I would call the doctor who is treating you and at least speak to the nurse and explain the tingling. They should squeeze you in to check this out. Better to be safe then sorry. On a side note after that is done have you seen a pain doctor anestesologist? My pain doctors have done more with pain control then my neurologist it seemed. Just a thought and I hope you feel better.

[Swmnupstrm]

If you were closer to Jacksonville, I'd tell you to go to the ER at Shands. The neuro department there is fantastic. I don't know the hospitals in your area.

[mrsD]

I think you should try Biofreeze gel... it stops much of the burning type pain very well.

Several online places sell it at lower prices than you can find locally. But some pharmacies have it with another name= Perform gel.

Topical things can work for some people with PN... but you have to try them. Some people even use Vics Vaporub cream, and claim some blocking of pain. It is the menthol in them that blocks the other pain sensations.

[woondog]

Try dilaudid and nortryptilne........After suffering from pn pain for
years and years....using vicodone, oxycondone, neurotron....
this combo did the trick and the pair do not keep me up
at night. These are powerful drugs, just below morphine, but
it sounds like your life is hardly worthwhile what with your
intense pain, that you should take them Ask you doctor.

Lastly, at night, if you can't sleep because of pain, get up and
do something. Try to sleep sitting in your chair with your head on your
desk. Get one of those treadmills or anything else.....use them
at 2 am if you have to. You will find that although the pain
does not completely go away,there would be a great reduction in same.

All the best: THE WOONDOG

[nide44]

Basically, you gotta try everything til you find what works.
There are 75 different meds for treating PN,
from acetaminophen to methadone.
They fall into 4 categories (plus topicals):
anti seizure, anti-depressant, opiates, & analgesics.
combination/'cocktails' of meds usually work best.

[zorro1]

Originally Posted by Leesa

Hi ~ Please ask your doc if you can try TOPAMAX. It works just like Neurontin, but it doesn't make you feel lethargic, or loopy, and it doesn't make you gain weight or retain water. In fact, a percentage of people lose weight on Topamax. I've been on it for probably 8 years now, and I've not had any side effects like I did on Neurontin. I've also been on the same dosage for the whole time. I'm on 400mg. per day and it has taken away all the tingling, burning, stinging, hot-poker type pain in my legs. It's been a life saver to me.

Just wanted to let you know about it, cause it really does work better. Ask your doc about it. All he can say is no. I hope he doesn't. God bless. hugs, Lee

i wouldnt mind trying topomax. is it possible to use it in conjunction with lyrica.
titrating down lyrica and adding topomax at the same time