Has anyone heard of this and has anyone had any luck? I am desperate for some relief. I'm on 1200mg of Tegretol + 900mg of Neurotin + 60mg of Cymbalta. I'm a little better than I was 3 days ago, but had a terrible morning. I'm having breakdowns. I'm just curious if anyone has tried this. Thanks for your help and support.
Is this a massage therapy? I thought my massage therapist mentioned something close to this on my last visit, but I declined having it done as I did not know the effect it would have on stimulating or calming my pain.
Yes I believe it is. My Chiropractor recommended it, but I'm scared of the same thing. I don't want it making my pain worse, but I feel like I'm a t a point where I will try anything.
Crainiosacral therapy is my main course of action. I believe that is what has helped me the most. I have cut down my meds from 3600 mg of gabapentin to 900 mg and and have not had any painful lightning attacks in approx 3 months. I would caution you to research thoroughly a therapist before making up your mind. There is a website that list the training of therapist to see if they are qualified. FULL DISCLOSURE. As I have said on my page that my therapist is my sister. If you like I can give you my more complete story. I will neither recommend or discourage this course of treatment, it is something you should research and decide for yourself.
Scott
I had a chiro adjust me the day of my daughter's recital. She is the mother of one of my daughter's classmates and saw me deteriate and WHAM the pain came. She warned me beforehand that the adjustment would either fix it or send me over the edge..... it helped me. She then spent time talking to me about my condition and stated that she personally does not like to treat people with TN while they are experiencing episodes of pain.. she will if they hit remission, but this is because when you are in pain, the percentage of chance of harming you is more.
Long story short, when we were talking she suggested finding a massage therapist that does cranial therapy... I just can't imagine right now having anyone touch my face.... I mean, if I use a brush or sponge for my makeup wrong, I can make myself have an episode like nothing else. Yet, I also feel that if there was a way to help me relax my jaw and stop from clenching, some of my episodes would decrease..... Feels like a catch 22 to me.
Greetings Lisa,
I too was afraid to have then touch my trigger point which was very painful in itself. On one session I told them about the point and she worked on it by direct touch. It neither hurt or triggered an attack. This was at a time of bad pain and lots of attacks besides the normal jaw pain. I still stress due diligence in researching the therapist if you choose to consider this treatment.
Scott
I should say my Chiro is a NUCCA Chiro not your normal back cracker.
kimik0206 said:
Yes I believe it is. My Chiropractor recommended it, but I'm scared of the same thing. I don't want it making my pain worse, but I feel like I'm a t a point where I will try anything.
Can you get me that website? :)
Scott said:
Greetings Lisa,
I too was afraid to have then touch my trigger point which was very painful in itself. On one session I told them about the point and she worked on it by direct touch. It neither hurt or triggered an attack. This was at a time of bad pain and lots of attacks besides the normal jaw pain. I still stress due diligence in researching the therapist if you choose to consider this treatment.
Scott
Scott, nevermind I found the website and the woman I am going to is on the list of certified craniosacral therapist. Thank you so much for the information. I'm glad I checked.
Kimoko2026,
Glad for found it. Be sure to ask all the questions you think of. Good luck and let me know what you come up with.
Scott
Hello! Good conversations, may I ask for the website. What makes this kind of massage diff. from Nucca or even just going to a regular massage therapist. Sorry for all the questions, but Scott I'm gonna have to take advantage of your personal knowledge and what you have learned..if u don't mind. I have not tried any kind of massage in spec. Just gotta check on the insurance first.
What about acupuncture..since in ur profile u had sd. that perhaps you received some alleviation from this as well. Does one seem to be more effective? Again if you commit to trying these, how frequent do u need to go?
Kimiko206 your therapist says that u need to go while not having an attack or she fears of making ur pain worse..?Hope you get some relief soon..I feel ya.....be sure to say a prayer for u!
greetings nickpotterygirl.
Sorry it took so long to reply.
I started both the acupuncture and the cranio sacral at the same time. The acupuncture helped the pain in my jaw and cheek for awhile. I did not have a regular schedule so it varied from I to 3 weeks. My brother in law is the acupuncturist so treatments were when we both could get together. I live 120 miles from him so that creates a little problem. I have a treatment whenever possible but not as often. I did research on the web before hand and found a study of a small group that had good success with it.
My sister is my cranio sacral therapist. Most of the time my sister and her friend and therapist give me treatments together. I started having treatments at two week intervals. At that time I was having several lightning attacks a day plus the pain in the jaw. I couldn’t drive and the sunlight was a killer. I had to use dark glasses and put a towel over face when riding in the car. Then as the attacks decreased in both numbers and pain levels, we started going every three weeks, then every 4 weeks and now every 7 or 8 weeks. Meanwhile I continually decreased my meds from 3600mg gabapentin to 900mg. I am not convinced they have not done much to help as attacks kept getting worse even on the high dose. After the attacks became fewer and weaker (down from 150 to 200 a day 5 to 8/9 pain level to less than 50 to none with pain level of 1 to 5) I would have what they called a healing crises . It came usually 3 to 4 days later. It consisted of a few attacks that were stronger than the previous ones of the time, but nothing like the first ones. I would go more often except it is a 5 hour drive.
As far as how long it takes with either treatment that would depend each individual. There is no guarantee that they will work for you, just as the meds or surgery has no guarantee either as told many times on this site. My sister has told me that we might have to have maintenance session that might be several months or more apart. Each person is different. I know that I am better for it and less groggy on the lower does of meds.
I have had many conversations on how it works but cannot explain it to you. There is several places on the web that does a better job at that than I can. Also ask a therapist if you find one that you are comfortable with. Ask lots of questions and make sure you are happy with the answers. I believe that should go for all doctors you see.
I am not a candidate for surgery. I was told they couldn’t find anything wrong and if they did surgery it could take several months to work and had an 80% chance of not working and coming back worse within 2 years. This seems to have happened to several people on this site.
I think that you might have a hard time getting the insurance company cranio sacral treatment for tn since it isn’t considered a mainstream treatment . Acupuncture might be easier, good luck with it.
I believe the cranio sacral has helped me the most, but have kept on a better schedule.
I have given you a condensed version of my tn and treatment. I am continually amazed and grateful for the way this is going.
I am continually learning and will never fully understand how it all works but am grateful for the gift my sister and friend have and also my brother in law. I have also learned that an open mind is a lot better than a closed one. I also pray for a “cure for any and all that are fighting the monster tn.
I hope this has helped and if you have any other questions I will try to answer. Remember your course of treatment is your choice so try and make the best one for you.
Good Luck and hope you become pain free soon.
Scott
Hey Scott!
Thanks for the response. It is always nice to hear a personal experience on these things verses a Dr. attempting to explain. I know we are all so different it seems on this ATN beast. Mine starts out as a dull aching feeling and then by the 2nd-3rd day it starts to throb. The throbbing becomes more intense and then it turns into the stabbing, electric shock like feeling. When I 1st started to have these attacks it lasted a week and now I am in week 4 and can still feel the residual of the last episode. The 1st 2 weeks into this last 1 were unbelievably painful. Went to ER and well u know, as a woman I would have rather delievered muliple babies than deal with this.
Mine also gets really swollen. I have been going to John Hopkins and am praying for some answers. I have seen many Dr.s, specialists and have had 2 neurologists state that I have ATN but Micheal Lim from Hopkins wnts me to see an ENT to evaluate the swelling. I had biopsy in Sept of last yr and all results good. They did find a salivary gland and so this has raised some ?s of perhaps a blockage of some sort. Had another Mri this past week. No results have been received. Trying to see if they can determine a compressed nerve.
I was surprised to hear you say that the sun hurt you. I find that heat or moist heat seems to help sometimes. I really would love to find a Dr. that only deals with TN or ATN patients. The Dr. in NY that I saw mentioned, I will have to try and look up his name. Not sure if maybe he deals basically with this or what?
I figure that my insurance prob. won't cover either, am hoping for something. I am recently on short term disability and so things are tight. I got a hug today from a friend and she bumped my cheek hard and its starting to hurt again. Like a nightmare of praying that those pains will disappear. I really do pray for a cure. I realized recently that I was putting all my faith in the Dr.'s to either fix me or tell me what is wrong with me. I think God wanted me to remember that I need to have faith in him 1st. To get me to the rt. Dr or if its his will to heal me.
I will do some more research on both of course, but I am open minded. I think I would do just about anything if I was told that it would fix me. LOL as well as any1 on this site. You know I have been on Gapapentin for almost a month and totally think it does really nothing. I am on only 600 mg a day and I'm sure I will slowly have it increased. When I was going thru the worst on last episode (when it feels like ur getting stabbed repeatidly) It helped for maybe 2 hrs to dull the knife a bit..if that makes sense. Still had to take other pain meds.It does help me sleep longer. My pain last time was non stop for 2 and a half weeks straight though. Round the clock of pills to try and keep the pain away. It feels like my jaw is clenched as tight as a fist. I thought I was seeing some one that knew more about TN & ATN at Hopkins. It was like almost every ? that I asked I was not givin a straight answer. It would be nice if u asked a ? that they did'nt know the answer to for them just to say hey ya know I'm really not sure.....Its like look I'm being tormented enough here can u just shoot straight with me.
Well all we can do is keep one another informed about each experience we have. As well if someone finds a Dr. that is awesome in treating this.
Good luck and I as well hope that you become pain free soon!!
Nicky
Scott said:
greetings nickpotterygirl.
Sorry it took so long to reply.
I started both the acupuncture and the cranio sacral at the same time. The acupuncture helped the pain in my jaw and cheek for awhile. I did not have a regular schedule so it varied from I to 3 weeks. My brother in law is the acupuncturist so treatments were when we both could get together. I live 120 miles from him so that creates a little problem. I have a treatment whenever possible but not as often. I did research on the web before hand and found a study of a small group that had good success with it.
My sister is my cranio sacral therapist. Most of the time my sister and her friend and therapist give me treatments together. I started having treatments at two week intervals. At that time I was having several lightning attacks a day plus the pain in the jaw. I couldn’t drive and the sunlight was a killer. I had to use dark glasses and put a towel over face when riding in the car. Then as the attacks decreased in both numbers and pain levels, we started going every three weeks, then every 4 weeks and now every 7 or 8 weeks. Meanwhile I continually decreased my meds from 3600mg gabapentin to 900mg. I am not convinced they have not done much to help as attacks kept getting worse even on the high dose. After the attacks became fewer and weaker (down from 150 to 200 a day 5 to 8/9 pain level to less than 50 to none with pain level of 1 to 5) I would have what they called a healing crises . It came usually 3 to 4 days later. It consisted of a few attacks that were stronger than the previous ones of the time, but nothing like the first ones. I would go more often except it is a 5 hour drive.
As far as how long it takes with either treatment that would depend each individual. There is no guarantee that they will work for you, just as the meds or surgery has no guarantee either as told many times on this site. My sister has told me that we might have to have maintenance session that might be several months or more apart. Each person is different. I know that I am better for it and less groggy on the lower does of meds.
I have had many conversations on how it works but cannot explain it to you. There is several places on the web that does a better job at that than I can. Also ask a therapist if you find one that you are comfortable with. Ask lots of questions and make sure you are happy with the answers. I believe that should go for all doctors you see.
I am not a candidate for surgery. I was told they couldn’t find anything wrong and if they did surgery it could take several months to work and had an 80% chance of not working and coming back worse within 2 years. This seems to have happened to several people on this site.
I think that you might have a hard time getting the insurance company cranio sacral treatment for tn since it isn’t considered a mainstream treatment . Acupuncture might be easier, good luck with it.
I believe the cranio sacral has helped me the most, but have kept on a better schedule.
I have given you a condensed version of my tn and treatment. I am continually amazed and grateful for the way this is going.
I am continually learning and will never fully understand how it all works but am grateful for the gift my sister and friend have and also my brother in law. I have also learned that an open mind is a lot better than a closed one. I also pray for a “cure for any and all that are fighting the monster tn.I hope this has helped and if you have any other questions I will try to answer. Remember your course of treatment is your choice so try and make the best one for you.
Good Luck and hope you become pain free soon.
Scott
Greetings nickpotterygirl,
I want to clarify the sun hurting me. I am normally a laid back person even under stressful situations. The bright light make me very anxious, This would cause me to be very stressed. This in turn would trigger the lightning attacks. This would usually happen in the car where I couldn't escape. The times would be when I had constant jaw pain with the lightning attacks 100+ times a day of 6 or more pain levels. Maybe A doctor can write some creative language to help with insurance company. I am lucky because I swap favors with sister and brother in law. Bartering is not dead!
I still find myself clenching my jaw, especially when I first get up. My cheek is swollen most of the time, but not enough for most people to notice. My sister drains my lymphoid which seems to help.
As far as the doctors and answers or lack there of, I always say I wish they could actually feel what I do and then I bet the conversation would be different.
Keep the faith and us informed.
Scott
Going for my massage today. I'm nervous. I'm in the middle of bad attacks so I'm nervous but I'm hopeful that it works for me. I saw my general doc yesterday and she is very open to everything. She is hopeful it will work also. I'm on 3 weeks of really bad pain. So fingers crossed. I'll keep you posted. Thank you Scott for all your information.
Try not to be nervous. Keep positive and an open mind. You will do good. I'm pulling for you. Good luck and have a great day!.
Scott
OK Scott, I had to cancel my appointment. I am having really bad attacks. In fact I'm having an MRI today. They increased my neurotin to 1800mg plus my tegretol I'm really bad right now. I'm going to try and go next week. If I can get this under control. Have you ever had the massage during a bad attack? I thought maybe it will help but i was scared to try it. I feel like a mess.
Greetings Kimik0206.
I am so sorry you are having really bad attacks. I too have felt like a mess, like a cornered animal, but the good days will come. The treatment I have is not a "massage" but a hands on treatment, no rubbing. At the first treatments I could have some attacks when the treatment started (continuing from before it treatment started) but settled down right away during treatment. I have a had lightning attacks before and after treatments and in between times. The jaw/face pain jaw pain also settled down during treatment. If you are afraid I would wait until you are comfortable with it. A positive mind set is an asset, as it is in all types of treatment. I know that is hard when your in pain. Good luck with your mri today. I'm pulling for you and behind you in whatever treatment you go with. keep us informed you are not alone in this.
Scott
Hi Scott,
Was trying to read up how to drain lymphnoids? Gonna pester u again for more info. I am having another episode, all from a hug. Is that crazy? It hit that trigger point, was just starting to go into remission. The gapabentin really seems to do nothing. Why does'nt the pharmaseudical(however u sp) companies come up with a pill to treat nerve pain. It would be nice to not take a pill for seizures and epilepsy and then be told well this should help ur nerve pain. Gapapentin has been around for yrs. Maybe we should start a new discussion on this? I am feelin down and it seems like no one cares about us atypical people. They gave up and so all they say is try this and ok that did'nt work so lets try that. Ok now I will see u in 2 weeks. I know I am not alone. Just ready for someone to make a new move in treating ATN pts. Saying my prayers and asking God to please help.
Greetings Nickpotterygirl,
I am sorry to hear about your pain returning. It really sucks that a hug or touch can cause pain. There is research being done but they haven't found the key yet. It would be nice if they could find a "one size fits all pill", but that probably is impossible since there is too many variables. I think they care but its hard to understand what we go through so it seems they don't care.
As far as draining lymph noids it's hard to explain as the pressure of touch and location is very important. If you could find someone trained in it they could show you. I was taught to do this for myself but it is better if someone else does it. I hope you feel better soon.
keep the faith
Scott