Having had four surgeries in the past for trigeminal and occipital neuralgia without relief my neurologist is now referring me to a pain center for prialt therapy. Has anyone tried this and what degree of relief did you get.
Thank you,
Marlene

Marlene, I don't know anything about it nor do I have any experience with it. Here are some links that may tell you more about it.

http://www.prialt.com/

http://www.drugs.com/pro/prialt.html

Thanks for the links, there are so many adverse reactions and with having so many allergic reactions to other medications it makes me hesitant to try this. I'll have to give it some more thought and research a little more.

Thanks again,
Marlene

Welcome to Neuro Talk. This site should help you with information and some advice. Feel free to answer any of the threads and respond. I did look up the information given by another post on this infusion you named. I would have to weigh very carefully the risks of this medication for pain. I also wonder what other kinds of therapy you have had before. I had not heard of this before, but I didn't like the side effects presented in the literature. Most people who are in a situtation with pain, also experince some kind of depression at times. The warnings of the drug seem significant in light of that.
I would do all the research available before I would do this therapy, and list the benefit to risk factor. Would you tell me what condition you have with pain? I have cervical issues, and have had several spinal fusions. I also had Katemine infusions for pain. This particulat protocal for me did not injure me in anyway, and I did some research on it before I submitted to it. I do wish you all the best, and hope that what ever you choose to to, that you research it carefully. Again, welcome to Neruo Talk. ginnie

Ginnie,
I have atypical TN that started 12 years ago with a complicated tooth extraction. I also have occipital neuralgia, a result of the second MVD. I have tried many, many medications including anti-seizure drugs, anti-anxiety and anti-depressants, a medication normally given for alzheimers disease, narctotic pain meds, fentanyl patches and methadone, with either no relief, allergic reations or side effects that were intolerable. I have had 2 MVD's, an occipital nerve decompression and a very complicated surgery that isn't done often called a C1 and C2 laminectomy with nerve sectioning of the C2 nerve roots. This surgery was done to remove the root of the occipital nerve and had to be done with hyperextention of the head to enable the surgeon to access the spinal cord, as a result I ended up with all 7 cervical discs herniated. Each surgery led to more pain especially the last one. I have had physical therapy, hypnosis for pain control, accupuncture and many nerve blocks and nerve root blocks still with no relief. My neurosurgeon wanted me to try deep brain or motor cortex stimulation but after my luck with the other surgeries I felt this was something I should avoid. I became very disheartened and felt like giving up, but somehow I started to accept the situation that I was in. I knew it was not going to go away and I had a wonderful husband and three beautiful children that I had to think about. Acceptance had been the answer needed, I no longer spent all my time searching for a cure. I just get through one minute at a time and I force myself to stop thinking ahead, by doing this I am able to get by. I take 1500 mg. of gabapentin and 30 mg. of baclofen a day, if I take more I have thinking, focusing and memory problems. I use lots of vicks, ben gay, ice and heat. My medications are prescribed by my family physician. I no longer go to a neurologist, neurosugeon or a pain clinic. My last surgery was in 2006, and my last visit to the pain clinic was in 2009. I had a regular appointment last week with my family doctor, it was then that the Priult therapy came up, but this probably another treatment I should not have.
I am alive, I try every day to think of someone that is worse off than me, and I pray more than I ever have in my life. I hope I have answered some of your questions, if you have more feel free to ask.
Have a great day,
Marlene

Good Lord, you really have been through so much. I don't think I could have been as brave as what you have been. Too much, too much pain, it just doesn't seem fair. I have vowed no more surgery for me after C3-7 fusion. I'm done, they would have to chase me down the street and put a staight jacket on for me to submit to more.
Yeh that therapy I looked up sounded just too scarry with the Psych problems it could present. It sounded even worse that what you have already been through. do you not take any pain medications? I can't imagin that. I have also heard of the brain stimuation. They are using that for altimers, and PD. I did not know it could be used in therapy for you.
How old are your children? I am glad you have your family for support. You must live for them no doubt. I think I would look into the brain stimulation, if just for the research. If they could shut down pain receptors, perhaps you could get some relief. Are you researching it? Please keep in touch, I do care. You are in my prayers. ginnie

I know a few t.n. & o.n. people who have motor cortex implants. and also 2 that have deep brain stims. It is a major brain surgery . It is also very effective when it is done by a good doc and programmer. If you decide to research deep brain or motor cortex and want contact with one whos had surgery let me know.

I really might Maybe find another neuro too. Can I ask did you get any relief from any of the surgeries ? were they all done by same neuro or different neuros?

the neuro you have now jumped over the PNS as an option for you and went right to the hard core brain stim. Did the neuro say why PNS isnt an option for you?? seems like youd go less evasive and work your way up. PNS can be put in and taken out with NO injury to the nerve. why wouldnt they try that first then go heavy duty brain stim ???
I am sorry you have been threw way so much and really hope you can get the help and docs you need to get better pain control.
We are here for you and care. Keeping you in my prayers. sending low pain and good energy to you.
PEACE
BMW

Thank you both for your concern. Ginnie, I do not take pain meds as I am either intolerant or allergic to all that I have tried. Sometimes the side effects aren't worth the relief although I will say the meds did not give me that either. The last neurologist I saw told me I have progressed to central pain syndrome(I think that was what he called it) and pain meds do not help that.
BMW, I did not get any relief from my surgeries, in fact each time things got a little worse, that is why at this time I do not think I would have another surgery. PNS was never mentioned to me only the motor cortex and the deep brain stimulation. All my sugeries were done by the same team and although I have had no relief I still would thank them with all my heart for trying to help me.
Again thank you for your concern, if there is anything I can do to help just ask.
Have a great day,
Marlene

I know your doctors tried marlene. I just wish it had worked. I really wish there were an answer to the kind of pain you have. I am lucky that for my spine and ankles a medication works. I do my best not to take the one for break through. Sorry you are suffering, and I wish there were some good direction for you to go. ginnie

I am in agreement with BM,,why did your MD skip right over PNS and go to Motor Cortex??
This is something I would discuss with your MD, he may not be aware of the stats on TN patients and the success rate that MD's that have performed this before are getting...very high success rate and as BM said minimally invasive,,,,it's not perfect but if you can travel and get the right MD and programmer it can be a life saver,,,,I know I just had one done and the change is remarkable. Have cut down on the meds and will continue to do so,,,will always be on some but I hope to get to half of what I was on,,,and yes I had been under the care of an excellent Pain Mgmt MD for many years,,,please look into this before you make any decisions and if your MD says no, ask why get clear answers and then go to a clinic that does them for a second opinion,,,,make sure you are not a candidate before you rule this out,,,,if we are confusing you PNS is another name for a neurostimulator that is usually placed in the back or neck but is now being used to treat TN patients,,please look into it, also if you are curious look at the thread on PNS,,lots of useful info there,,Good luck we are all here for you should you need help,,don"t hesitate to ask,,we have all been where you are and are honored to help when ever we can.....Beth