[sheila]

i started having burning with everything else but it has gone from my back to my face even my behind in my arms and hands my feet dont get it that bad all this has happened in a period of aboat a week i take gabapenton 2400 mg a day amitriptaline 2x25 mg at night and diazapham 5mg 3x aday i have an appt with a proffeser of neuralogy on the tenth of december but i cant wait the worst part is my stomach and chest area it just burns i feel like a dragon when i breathe in or out its hot air i have an appt with my very very bad neuro tommorow but when i ask him quastians he just says he doesent know .. my reguler doctor is the one that is prescribing my meds but he says i need to make him talk to me ..and give me ansers does anyone have any advice i cant go another day like this and theres no way i can make it untill the tenth thank you very much

[nide44]

I think that you need to have a 'cocktail' of a pain killer along with your neurontin.
Most of us use something in the opiate, or synthetic opiate class along with neurontin or Lyrica.
I take Tramadol (generic Ultram) @ 100mg 4x day along with my Lyrica, but was taking the same before I switched from neurontin (6+ years on neurontin, plus Tramadol ).
I'm not sure that it can be taken along with Valium (Diazepam) and may knock you loopy, if you do. But the Diazepam is a mild trnquilizer and is used primarily for anxiety (sometimes as a sleep aid), but isn't for pain-usually.
I think that you need a pain killer for that burning.
But 2400 mg of neurontin is just about the base minimum for PN symptoms, as well.
You may need to increase to 3200 or 3600 a day for symptomatic relief.
I think your meds need to be revised, and a different mix may help.

[jakatak]

Originally Posted by nide44

I think that you need to have a 'cocktail' of a pain killer along with your neurontin.
Most of us use something in the opiate, or synthetic opiate class along with neurontin or Lyrica.
I take Tramadol (generic Ultram) @ 100mg 4x day along with my Lyrica, but was taking the same before I switched from neurontin (6+ years on neurontin, plus Tramadol ).
I'm not sure that it can be taken along with Valium (Diazepam) and may knock you loopy, if you do. But the Diazepam is a mild trnquilizer and is used primarily for anxiety (sometimes as a sleep aid), but isn't for pain-usually.
I think that you need a pain killer for that burning.
But 2400 mg of neurontin is just about the base minimum for PN symptoms, as well.
You may need to increase to 3200 or 3600 a day for symptomatic relief.
I think your meds need to be revised, and a different mix may help.

Tramadol is a good addition to the war on PN. However, if it is really over the top, you might want to consider Oxycodone. I've been on it for a couple years, and although I'm not real happy about the addictive nature of the opiate, it does do the trick. Either that, or Oxycontin...a slow release drug that gives you a constant level of pain relief. Hydrocodone also works.....Good luck.

[nide44]

Originally Posted by jakatak

......, you might want to consider Oxycodone. ........., or Oxycontin...a slow release drug that gives you a constant level of pain relief. Hydrocodone also works.....Good luck.

All of these are in the opiate class I mentioned.
Tramdol is the synthetic opiate, milder- and not supposed to be as addictive, but a dependency on a medication, is different from being addicted to it. If a med lets you lead a normal life and does not get you high, a dependency is a good trade-off.

[dahlek]

Two issues are going on here?
First off the SPREADING of that burning. If it were me? I'd call the neuro I'm to see in Dec [not too far from now? really] and explain HOW things are progressing. Where and how bad. I do believe many prior posts can give you the 'right words' to write down...and YOU DO right them down. Make a list of what's happened from day one to day now? and where things went sort of fast? I say that because that's what happened to me.
Be very clear about your stomach and chest feelings. And Concise. Think of ONE WORD descriptions that are most 'right' for what is going on.
Second issue? -Call your regular doc and ASK....should I go to the ER? Me? I wish, in my own case, I'd not, but rather went directly to the neuro....but it's water under the bridge. My regular doc said go to the ER where even morpheine didn't numb that pain. BUT yours, with the breathing should get you treatment and FAST! Tomorrow morning first thing! Promise me you will call your docs? It's crucial for your long term health and well being to get seen and tested and hopefully helped ASAP!
My heart is with you for the duration! Just let us all know how things go! IF docs don't call you back by mid day? Call again! Then call again at 3PM! You are having a real problem if you can't breathe or you are having stomach problems to boot? As I said, write it down, make a list, then check it off!
I know it's HARD to keep it 'short and sweet' when you are in OH!MY GOSH!!-what the fruitcakes is going on?- mode? But, writing it down and keeping it to that list HELPS both you and your docs FOCUS Also It's useful to write it down, then keep a picture of what you wrote in your mind? Cause many, many docs will be asking you all sorts of relevant and then some truly silly questions... And they'll ask...over and over and over again! Being consistent helps a BIG bunch. Besides? Breathing is a very useful thing? If you've not noticed?
Take deep[mental] breaths before you speak to any one, I know it's hard, but you've GOT to stick to facts that can help the docs...even if you are in that PANIC MODE - and you are near that now...I can tell, cause I've been there myself. More than once?
Keep having faith that docs get 'smart' about what is happening to you! And then do something right!! Hugs 's and hope always! - j

[homer80]

I am a new member, I have been having similar burning for the last couple of weeks after a few months of just my normal pain. I would like to ask Dahlek how long it took for his similar experience to calm down after going to the ER. Thank you

[dahlek]

in the area....for PN and he's rated as a 'top doc' by many. It took me one year and one month to get fully diagnosed and treatment for an auto-immune related 'polyneuropathy'.
It took me another 6months from onset with my 'un-preferred' neuro to change and then I sought a 'third opinion' from a top ranking teaching hospital...where I was lucky enuf to get an appt with the head of the neuro dept! Tests galore? But all done locally so I didn't have to drive into the city and walk miles after parking on my own...I'd get soo tired soo easily that I was always afraid about getting home in one piece.
When I first got myself computer savvy several years ago? It was places like this that helped me immensely. Knowing that others suffer too? That they are brave and often braver than I am keeps me going!
I now describe what it 'feels' like as would a burn victim..only there are no outward signs...that and MS. When those nerves die? You can FEEL them almost screaming! I am now getting IVIG every four weeks and just had a medi-port installed today w/outpatient surgery-which should eliminate folks trying to get the IV cathers into my veins- sticking for 3-4 tries each time...and I've a skilled IV nurse too. I've just have lousy veins now.
To qualify for IVIG? You have to go thru about 12 tests...and if 6-of them are definite? Then you can get the IVIG. I pray you have not just good, but GREAT insurance tho? This stuff is RICH an in $$$$ !! I do have to say tho, after my very first infusion [part of a 'loading dose', it's called] I was able to walk around almost normally for the first time in over a year! More importantly for me tho, was that my numbness and pain has been spreading to my torso. It's stopped and at times it's almost gone-tho never completely. What Pain I have now? Is what I call my new 'normal' which is much hier than most folks. I do know and appreciate that it sure could be worse! That I've got a treatment that works helps a lot as well. I rarely take pain-killers now, mainly because they tend to mask some of my other med issues and I've got to keep alert on all fronts! Hardest of all is to keep pressing for some sort of diagnosis and get the best treatments FOR YOU that are available. I hope this helps! - j