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Posted 9/13/2010 10:17 PM (GMT 0)
hello my dear friends,

I am sorry that I have not been posting lately. Like many of you, I have been having a hard time with my pain. It is always continuous and severe 24/7 at a level of 10/10. So I struggle every day. Today I saw my pain doctor and we are going to try a combination of meds, Gabapentin and Mexiletine (an oral form capsule acting like Lidocaine). I pray that this can help as there are really no more avenues for me to try.

Even though I haven't been posting, I have been reading every day on the forum and think of you all quite often. I know that each of us struggles with our pain and wish so much it wasn't that way. Why must we all suffer so much?? Because it makes us better people, and stronger to be able to cope..... God will not give us more than we can carry. He will heal us, but it will be on his time.... we must be patient..... one day at a time.

I hope you have each had some bright moments in your day.

Love and hugs

Posted 9/14/2010 2:57 AM (GMT 0)
Hi Suzane,

Thanks for the update! Did you ever ask your doctors to look into peripheral nerve stimulation for you (aka the stimulator that I have in my face, but perhaps on different nerves for you)? I know they do stimulation of the occipital nerve, as well as the trigeminal, here in the USA & perhaps some combination like that might help.

I'd also suggest doing some reading & talking with a neurosurgeon about deep brain stimulation. DBS has been used for a long time to treat treatment-resistant depression, but it is now also being used to treat treatment-resistant chronic pain, among other things. It looks promising, in that it reduces the pain, and yields long term results. In your case, I think that this might be something worth seriously pursuing. See some of the below links:

www.spineuniverse.com/professional/treatment/surgical/study-examines-effectiveness-deep-brain

www.medscape.com/viewarticle/554868

health.howstuffworks.com/medicine/surgeries-procedures/deep-brain-stimulation.htm

www.thelancet.com/journals/laneur/article/PIIS1474-4422(06)70575-0/abstract

www.mhni.com/clusterheadaches.aspx <--- this particular link is very interesting, as it also talks about various other treatments which you may or many not have looked into before

I hope you find some of thing helpful. I'm always keeping an eye out for anything that might help you, Suzane! As always, you are in my thoughts & prayers. Hang in there

hugs,
Skeye
Posted 9/14/2010 7:42 AM (GMT 0)
I had so wished you were feeling better and just out and about....I'm sorry to see that it was worse.

From a 10 everyday, you have nowhere to go but up. Please check out the sites and see if there is anything you and your Dr. can talk about on them that micht look promising.


All my best.
Posted 9/14/2010 11:56 AM (GMT 0)
Awww Suzane, once again I am so sorry to hear that you are still hurting so bad. I really hope this new med combo gives you some relief. Please keep us posted as I think about how you are coping alot. Take care my friend.
Posted 9/14/2010 2:47 PM (GMT 0)
Best of luck to you Suzane , you so deserve a break from your suffering , I'm praying one of these new meds gives you some releif my friend , your such a sweetheart . I'm thinking of you !! Mikel
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