I ran across Craniosacral massage as a possible help to managing this disease. I contacted Dr. W. at this web address: www.portlandalternativemedicine.com and she said she has not treated a TN patient before but would like to see if it works for me within 5 sessions.
Has anyone heard of this or tried this for their TN management?
Thank you in advance for your input!
Sincerely,
LyndaS
I think one of our members, Scott, has done this.
PS, if you do try it, let me know how it works! I could drive up if it were worth it.
Yes I have, We have a discussion on this going on page 2 of this forum. just scroll down until you get to crainio cascral therapy started by kimiko. I am willing to discuss further with you if you want.
Scott
At one time, I believe sessions describing this type of massage were given during TN Association national conferences. I am uncertain of overall efficacy of the technique. You can search their knowledge base after getting a login at their site: http://www.fpa-support.org
Regards and best,
R.A. Red Lawhern, Ph.D.
Resident Research Analyhst
I had one full hour session with a chiropractor. It relieved a lot of the neck and head pain but the TN itself did not diminish all that much. Within a week it was right back to where I started from. This does not mean it might not work for you. At any rate the massage did have some short term benefits.
Thanks, everyone, for your input. In regards to chiropractic care: a chiro in the Portland, OR area talked to me way back when this all started 10 yrs ago. He said that chiro could help if the TN pain originates from the C-vertabaes in the neck, but if it is not the area of origin, chiro could not be effective for TN. (I was pleasantly surprised by his honesty!) He did say, however, that caring for the rest of the body was just as important as tending to the "squeaky wheel" of TN. The MRI and x-ray of my neck showed no compression, so chiro was crossed off my list.
The crainosacral massage intrigues me as well as hypnosis to deal with the lingering damage from the Gamma Knife. I'll have to save for it or see if my insurance would cover some of the service for CS massage if the Botox stops working for some reason.
Thanks again for your input.
Have a wonderful day!
LyndaS
I was having this done once a week when I was living in Seattle. It was very costly, but the only thing that could bring me from a 10 to a 5 in a few minutes. I was fortunate enough to live above my naturopath who was treating me, and when I needed her, she was always there.
No, it does not take away all pain, nor does it stay away for long periods of time, but it is very, very helpful for severe flare ups. Sometimes mine stayed away for days after a good massage, and that was worth it to me. I highly recommend this!
It barely feels like she's moving her hands, but it makes all the difference.
Thanks for your input, misstammie! Now that you're not in the Seattle area, are you considering looking in your area for another naturopath that does this?
definitely. also, she was using B12 injections to treat my nerve pain, and it worked for a month. after that, the TN came back with a vengeance but I continued to give myself the B12 injections as they helped me feel human aside from all the medicine I was taking. it really curbed some of my side effects. and i taught 2nd grade at the time so i really needed it!
I don't have a immediate response like a chiro cracking my back or a massage manipulating muscles. For me it is a slow but steady process. Everybody is different. I would make sure the CS therapist has the training and experience with the trigeminal nerve. Like any procedure people can react in different ways. So far it has worked wonders for me and I believe it will continue to do so.
Scott
Oh My God NOOOOO !!! My trigger is on the back of my head, and the simple task of brushing my hair sends me through the roof. 
Hello All.
Recently, I attended two cranial-sacro osteopathy sessions conducted by a MD. I chose this therapy in a desperate attempt to improve my condition…if even by an inch.
By way of explanation, I had had a major flare up in early December 2011---the first flare-up in 6 months. In those six months, I was punctually taking without exception 150mg. of trileptal 3 times a day. In those six months, nothing changed. Then…wham.
My spasms have increased from 7-10 seconds to 10-14 seconds with these last 4 seconds being a previously unimagined pain, a new thin malevolent pain that has me screaming non-stop in addition to the customary clutching/pressing my face as hard as I can and invariably crouching near/on the floor. This newer, longer pain brings me to the precipice of being knocked-out but sadly, does not push me into unconsciousness.
My meds were increased to 900mg. of trileptal and 1200mg. of neurontin. As this zombie-producing drug mix began to distance me from feeling the pain of underlying spasms and then actually eliminate the spasms, I began to look around frantically for something, other than surgery, to---like I said----distance myself, if by one inch from the return of the spasm and prospective surgery.
I remember talking to a stranger who had TN and who refused to take medications. A mutual friend asked me to talk to him. In our e-mail exchanges, he mentioned the word: sacro-cranial osteopathy. Sooo, in addition to my stopping eating meat, beginning acupuncture, and---of course, enough medications to stop the spasms and handcuff me, as a side-effect, to a depressing preview of alzheimer's…I tried cranio-sacral osteopathy.
Here I must pause and tell you that which you may have already deduced...with the amount of drugs I was/am taking, no therapy would be able to distinguish itself as improving my TN condition. Even if it did help, I couldn’t/wouldn’t feel that help. I knew this ahead of time but I needed to do something, something new, something extra. I needed to be proactive and somehow, someway, I hoped that it might help me hold on to my sanity.
So, why am I offering my experience if I cannot say if the therapy worked or not? Good question…because perhaps all these words might add insight and assistance to one person, like me.
I never looked up the therapy to understand what it involved. I went forward thinking that the therapy would be a chiropractic manipulation of the neck bones from the bottom to top of my neck. And boy, when I was on that table facing the ceiling, was I surprised.
The doctor put her hands around the sides and back of my skull and sometimes at and around neck bones but her touch never exerted more pressure than a nickel would lying on my head. In fact, sometimes, I imagined this most light touch as actually hovering over my skull, it was that delicate a touch. And there she remained, sometimes motionless. What a shock it was to learn that this was the actual therapy. She also did the same thing down by my feet/ankle area.
Again, if the therapy worked, I would not be able to tell you because of the measure of meds I’m taking. Likewise, if the therapy didn’t work, I could not tell that either. Had I been of good health without TN plaguing me, I would have been skeptical to the extreme. But I am not in good health. I am in desperately bad health. And I live in mortal fear of the meds not-working-again. So I never questioned the efficacy of the Dr. or the therapy for the two hour long sessions I attended.
I have no idea whether the acupuncture is doing anything either but I am continuing this therapy. My not-eating-meat is continuing and, I think, is aimed at my trying to lose or at least, keep in check my weight which increased by 25 Med-pounds since going from 450 mgs. of trileptal a day to 900mgs. of trileptal plus 1200mgs of neurontin.
Tomorrow at 2:00PM, I am scheduled to have a stand-up MRI with and without contrast, the first leg of what I now hope will be a successful MVD sometime in the near-future.
I can’t live with the meds at this level. And I am mortally petrified of any weaning. The meds are robbing me of me.
Good luck everyone.
they do it close by, but i may try accupressure or upper cervical chiropracters. i am nervous about trying new things. ive heard feldankreiss helps. cant spell. i just dont know. how are you. 3 appointments ar hopkins . 2 in march. one in may. i have papers at other dr offices.
It has been and was told to me that the crainio sacral therapy is a slow process. Like most treatments everyone is different I would suggest that you discuss the treatment plan with the therapist so you understand it. I would also recommend that you check to see what experience they have. nonchiaro described the experience the same way that my treatments go. Good luck in whatever treatment you choose.
Scott
did it help. i hope you are better. why has it worsened?
nonchiaro said:
Hello All.
Recently, I attended two cranial-sacro osteopathy sessions conducted by a MD. I chose this therapy in a desperate attempt to improve my condition…if even by an inch.
By way of explanation, I had had a major flare up in early December 2011---the first flare-up in 6 months. In those six months, I was punctually taking without exception 150mg. of trileptal 3 times a day. In those six months, nothing changed. Then…wham.
My spasms have increased from 7-10 seconds to 10-14 seconds with these last 4 seconds being a previously unimagined pain, a new thin malevolent pain that has me screaming non-stop in addition to the customary clutching/pressing my face as hard as I can and invariably crouching near/on the floor. This newer, longer pain brings me to the precipice of being knocked-out but sadly, does not push me into unconsciousness.
My meds were increased to 900mg. of trileptal and 1200mg. of neurontin. As this zombie-producing drug mix began to distance me from feeling the pain of underlying spasms and then actually eliminate the spasms, I began to look around frantically for something, other than surgery, to---like I said----distance myself, if by one inch from the return of the spasm and prospective surgery.
I remember talking to a stranger who had TN and who refused to take medications. A mutual friend asked me to talk to him. In our e-mail exchanges, he mentioned the word: sacro-cranial osteopathy. Sooo, in addition to my stopping eating meat, beginning acupuncture, and---of course, enough medications to stop the spasms and handcuff me, as a side-effect, to a depressing preview of alzheimer's…I tried cranio-sacral osteopathy.
Here I must pause and tell you that which you may have already deduced...with the amount of drugs I was/am taking, no therapy would be able to distinguish itself as improving my TN condition. Even if it did help, I couldn’t/wouldn’t feel that help. I knew this ahead of time but I needed to do something, something new, something extra. I needed to be proactive and somehow, someway, I hoped that it might help me hold on to my sanity.
So, why am I offering my experience if I cannot say if the therapy worked or not? Good question…because perhaps all these words might add insight and assistance to one person, like me.
I never looked up the therapy to understand what it involved. I went forward thinking that the therapy would be a chiropractic manipulation of the neck bones from the bottom to top of my neck. And boy, when I was on that table facing the ceiling, was I surprised.
The doctor put her hands around the sides and back of my skull and sometimes at and around neck bones but her touch never exerted more pressure than a nickel would lying on my head. In fact, sometimes, I imagined this most light touch as actually hovering over my skull, it was that delicate a touch. And there she remained, sometimes motionless. What a shock it was to learn that this was the actual therapy. She also did the same thing down by my feet/ankle area.
Again, if the therapy worked, I would not be able to tell you because of the measure of meds I’m taking. Likewise, if the therapy didn’t work, I could not tell that either. Had I been of good health without TN plaguing me, I would have been skeptical to the extreme. But I am not in good health. I am in desperately bad health. And I live in mortal fear of the meds not-working-again. So I never questioned the efficacy of the Dr. or the therapy for the two hour long sessions I attended.
I have no idea whether the acupuncture is doing anything either but I am continuing this therapy. My not-eating-meat is continuing and, I think, is aimed at my trying to lose or at least, keep in check my weight which increased by 25 Med-pounds since going from 450 mgs. of trileptal a day to 900mgs. of trileptal plus 1200mgs of neurontin.
Tomorrow at 2:00PM, I am scheduled to have a stand-up MRI with and without contrast, the first leg of what I now hope will be a successful MVD sometime in the near-future.
I can’t live with the meds at this level. And I am mortally petrified of any weaning. The meds are robbing me of me.
Good luck everyone.
Hi Elaine,
I never knew if Craniosacral helped. I was taking too great a dose of meds to feel any difference; and I only participated in two 1-hour sessions. Thanks for your good tidings. I am feeling the same right now---no pain but dazed by the meds. I am not sure why my TN has worsened. I suspect it may be the nature of the disease: "to get worse over time". I’ve had TN now for 9 1/2 years. In two days, I’ll meet with a surgeon who will hopefully perform my MVD. A new chapter in the litany of my disease. I pray one of the last.
Hope you are doing well. Good luck.
I apologize if I'm wrong, & also for using total lamence terms here but I went to a wholistic chiropractor once who was going to attempt to "rearrange" the bone plates that made up my skull. I'm almost positive this is the same if not similar to what you mentioned.
I don't ever try to tell people not to try something that didn't work for me, becuase it could work for you. But this woman and the whole process was just bizarre and I felt like it was a joke. She'd press a certain part of my head while laying down on a table & pressing my knee to my chest by holding my foot. then she'd press a different area and ask me to resist her pushing my knee to my chest - she was CLEARLY increasing the pressure on my leg. fighting back with all her might against me. then she'd say "see - its harder to push when i put pressure on this point in your skull". after that i knew that would be the last time i'd see her. she may just have been a quack.
if you do try it i'd love to hear about it.
best of luck!
amanda