Thank you so much for your words of wisdom and hope. I will keep you posted on MRI and when i can get in for my therapy. I'm flying Wedneday. do you think I could have a therapy and fly the next day? Mr. Knoweldgeman? haha
Scott said:
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.
Your welcome. The treatment wouldn't have an effect. I understand the pressure in the cabin might have an effect but don't have any personal experience with it. you will have to ask someone smarter than me, not hard to find! lol. Check with your doc or therapist and see what the recommend. Good luck tomorrow.
Thanks again! Someone else sd that it is blood...from a damaged vein? I have the swelling on the rt side of my face and under my chin on rt side as well. I dunno, I thought it was swollen lymph nodes. I am pumped if they can be drained, its nice not to look like a chipmunk. LOL!!
Totally stinks all from a hug. Was trying to explain this to my Dad, hard to explain. I did'nt realize that they are researching specifically trigger pts? I know that hot water always helps and seems to help with the swelling sometimes. Atleast for me. BTW U R doing just fine explaining, as long as I don't have to inject a needle in my own face, I think I can manage. But u know I would do it if I had to. Take care!
Nicky Scott said:
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.
So upset! MRI came bad normal...normal? how can it be normal with what i feel in my head ? I just want to cry. My meds are making the pain less, but not getting rid of it. Maybe I will just have this pain forever. So my life will be tipsy because of the drugs and painful for the what the drugs doesn't touch. I will try craino sacrial theraphy and I will not give up. Today I'm just having a little pity party for myself. I just want some one to see what the problem is and say OH we need to do this and you will be healed up. I'm sure we all want that. Thank for reading my vent. I'm sorry.
It was very frustrating for me to try to explain also. Now I tell them to imagine a cattle hot shot prod (electrical charge on a stick to get cattle moving) stuck on your face x 10 strength. If they don't know what a cattle prod is I tell them to imagine having the worst sunburn ever on your face and having the incredible hulk slap you x 10 strength. Of course they still haven't felt what we have but they at least usually cringe.
Chipmunks are cute unless you are a nut! haha
Kimkik0206
I had three mri's and they all came back "normal", after the first two they gave me tests for every thing they could think of that might cause my facial numbness, cancer test, ms, upper and lower gi's all kinds of blood tests. they came in to the room and said Great News we can't find anything wrong! I replied how is that great news? If you could find something wrong at least I would know what it is and how to fight it. Al-tho they did find out I was anemic, but didn't know why. I got a copy of the third mri and took it to another medical person and they showed me where my nerve was inflamed. It is very upsetting to feel pain and can't find a cause. I would suggest you check out the cs therapist to see what training and experience they have with trigeminal nerves, don't be a guinea pig. Venting is good and don't apologize for it. keep the faith and let me know how it is going.
I just wanted to check in & see how u were doing. I hope a little better. It's alright I think we all have our moments of pity parties for ourselves. It's rough, hang in there! I know what u mean with all these tests and still nothing is gained. I wish u a nice weekend and I hope ur doing better! Nicky
kimik0206 said:
So upset! MRI came bad normal...normal? how can it be normal with what i feel in my head ? I just want to cry. My meds are making the pain less, but not getting rid of it. Maybe I will just have this pain forever. So my life will be tipsy because of the drugs and painful for the what the drugs doesn't touch. I will try craino sacrial theraphy and I will not give up. Today I'm just having a little pity party for myself. I just want some one to see what the problem is and say OH we need to do this and you will be healed up. I'm sure we all want that. Thank for reading my vent. I'm sorry.
Well Friends. I just had my first Cranio Sacral Theraphy. I really enjoyed it and I am hopeful that it would help. I am having a much better day thank you so much Nicky. I will be spending my evening relaxing drinking lots of water and thinking positive. Thank you for all your support.
I am glad you had a good experience and are having a better day! They keep telling me to drink lots of water also, Which I don't like to do, so it must be a good thing. Thinking positive is good thing and helps in healing. Sometimes that is hard to do.
Good day number 2 not a painless day,but a better day than I have been having. Fingers crossed for more good days. Going to Florida to see my Mom Wed. I really would love to have low/no pain when I'm there.
Back from my mom's and back to my Craino Sacral Theraphy. I was really hurting and my stupid self didn't even think about going back for more theraphy. She got me in and worked on me for 2hrs. It was amazing. I am so blessed for her. I am going back Monday. I really believe she can help me. I have to believe or I would go crazy. I will keep you all posted.
I'm trying Scott. Thank you It is so hard when I'm embarrassed to go out anywhere in fear of having "attacks" I'm praying that my therapy sessions will work. I don't want to just pump more drugs into my body. I have a great job and I'm afrain if they put more drugs in me I won't be able to do it anymore. Sorry for venting to you. I hope you have a great day.
GOD, what is is that we have ? i mean - i can not accept that. i suffer from conmstant pain + burning.... all the time...
i was a healthy guy . went to the dentist - it all strated. i DO feel that it is some kind of infection that is not seen on XRAYS.
all the meds...
i'm not taking any meds ... and kimik0206 - i'm reading you take 3 different meds... i'm afraid taking only one (cymbalta , or tegretol) - tryed lyrica high doses this year - and it made me feel not good. and took the pain only maybe 20-30 percent .... i don't know.. so afrid to take meds again.... but on the other hand - it's impossible to live lke that.. thinking so much of "ending it all" ... .and don't want to . i was a healthy guy - there must be a solution.
Nir Morita, Please don't think so much of ending it all. We are all here to support each other and help each other battle this terrible thing we all have.
I don't know if the Cymbalta is worth it, but I think it helps keep me from crying most days. I too went to the dentist and then it all started. But i also have lived through a Brain Aneursym, so I feel I'm still here for a reason. I'm not sure what that reason is, but I'm willing to fight until I figure out what it is. I believe you are hear for a reason also my friend. Please keep fighting. "Someday everything will make perfect sense, so laugh through the confusion, Smile through the tears and keep reminding yourself the everything happens for a reason."
I'm on EVERYTHING (except Tegretol, because I was allergic to it, but I rolled the dice for Trileptal). It's probably gonna take some time before it kicks in, and they'll up the Neurotin, and Cymbalta. I wouldn't be surprised if Keppra became part of this diet.
And as always, I recommend vodka, and a little marijuana on the side. Spare money for pizza!
I understand about going out for fear of having an attack or putting more drugs in your system. I also pray for your therapy to work and any treatment anyone with tn will work for them. Don't apologize for venting, I am here for you as are the other members. keep the faith and have a great day!
Scott
kimik0206 said:
I'm trying Scott. Thank you It is so hard when I'm embarrassed to go out anywhere in fear of having "attacks" I'm praying that my therapy sessions will work. I don't want to just pump more drugs into my body. I have a great job and I'm afrain if they put more drugs in me I won't be able to do it anymore. Sorry for venting to you. I hope you have a great day.