I'm going for it

When I first got GPN about 6 years ago it came on like a mother. At that time, the Dr’s did not know what I had and I had to diagnosed myself. I’ve took dangerous cocktails of different meds, huge doses all at once just to ease the pain. I would still have breakthrough episodes of pain lasting about 4 to 5 minutes long. I did a lot of research on GPN and it interested me that inflammation at the smallest levels is recognized with this disease. I know ppl aren’t willing to do this, but I drastically changed my diet to a low to anti-inflammatory diet and it helped a lot. Not totally pain free, but not nearly as bad. However, my remissions are getting shorter and shorter , annoying stabbing pain that I’m living with everyday (small attacks mixed in with medium too many to count), but I’m still functional at about 1000 to 1200 mg of tegretol for about 5 months now. I’m sick of it. I had an MRI and my surgeon found this big blood vessel that he showed me on the MRI on the left side witch does not match the right. Seeing this was good enough incentive for me. I’m going to make the move to MVD and I’ll let y’all know how it turns out of course.

Victor, I have read that most MRI’s don’t indicate an issue for GPN, so you must be “relieved” to know the exact cause of the pain. I look forward to your ‘pre’ and ‘post’ MVD updates. I am also quite interested to hear about the dietary changes you made. I know I need to be more proactive and not just rely on the meds, but as I search for ideas, the volume of minerals, vitamins, tissue salts, food eliminations etc becomes massive without absolute proof for success. You have found some success focusing on the inflammatory aspect of GPN…I would love to hear how you achieved this! Thanks

Hey Victor,

I'm sorry you're cursed with this damned thing too, it's a nightmare of a thing, it seems a lot of us end up doing the diagnosing ourselves, no one has a clue what GPN is! I'm interested in your diet change, is that the same as the fat free TN/cardio diet I've read about? or is it something different? I know the feeling of being sick and fed up of the whole thing, especially the drugs, but I'm glad that at least they've been able to determine that there is a compression in place and that you're a contender for surgery, that in itself must be a relief, cause so often with GPN there just isn't a determinable compression visible.

I wish you all the best with the surgery when it comes about and I hope that it'll make all the difference to your pain so you can get your life back to normal.

Much love as ever

Gracie x x x



Grace Mackay said:

Hey Victor,

I'm sorry you're cursed with this damned thing too, it's a nightmare of a thing, it seems a lot of us end up doing the diagnosing ourselves, no one has a clue what GPN is! I'm interested in your diet change, is that the same as the fat free TN/cardio diet I've read about? or is it something different? I know the feeling of being sick and fed up of the whole thing, especially the drugs, but I'm glad that at least they've been able to determine that there is a compression in place and that you're a contender for surgery, that in itself must be a relief, cause so often with GPN there just isn't a determinable compression visible.

I wish you all the best with the surgery when it comes about and I hope that it'll make all the difference to your pain so you can get your life back to normal.

Much love as ever

Gracie x x x

Same for me Gracie. My doctor won't even consider surgery because she says there is no definite view of GPN on an MRI. I am glad that nothing was found but sad that there isn't one definite "thing" that can be fixed. I am beginning to let this devil consume me. It's hard not to when the minute you wake up, the pain starts. I have been up for 30 minutes (work nights) and I feel like my brain is coming out of my left ear. Already!!! I don't like rolling out of be and taking a damn pain pill! May you all have a pain free day! Love you all already!

Yes, I was fortuante that the vessel is an obvious one. I may of held off on the surgery if he didn't find anything as I didn't want him probing around looking for it. However, there is a small chance that this vessel is not the offender, but he says the chance is greater that it is. My previous Dr's did not want to give me the surgery as well, even though they seen me like a zombie on tegretol with my drooling cup ( i dropped one in one of their offices..lmao). If i had to do it all over, I would suggest changing Dr's until you find one. If you're interested in the diet, here is a good site with the book to start (their are a lot of books on inflammation). The book is a fast read and got me on track with mine:

http://www.inflammationfactor.com/

I decided not to have the shot tomorrow. I am going for another consult. I am afraid the pain management doctor is giving me a shot for nothing. I am going to find a new neurologist for a second opinion. What do I have to lose? This pain is here and it's not going anywhere. Surely a doctor would understand if you had t get a second opinion. In the mean time, I take my cocktail of meds and add in the pain medicine about every 3 to 4 hours. I have added magnesium to my diet.