VIP, I am happy I could help. 
Jasmine; Ice pick headaches? I have them too. Annoying, but I always had them, so never thought of it, they are so rare. But horrid pain, definitely.
I get pain on top of my head that feels like exploding fireworks, if that makes any sense.
TN is very difficult to except. I think because for many of us there is not a definitive 100% diagnosis that our brains are left to wander over everything else that it could be. I had a lot of anxiety and depression during the first year of having ATN. As time has gone by, tests done and DRs visited slowly some of the layers of anxiety have been lifted away. I don't have MS, I don't have cancer, that horrible pain really is my nerve and nothing else. What has been left in anxiety's place is the process of grieving and somehow trying to accept this diagnosis, this pain and the unknown future of what my nerve's have in store. It is a process.
I keep busy first of all. I don't do so well with down time. Luckily, I have a lot to occupy my mind. And awareness. Talking with other people that have similar experiences to me with this beast and trying to help newcomers with information and pointing them in the right direction.
That is good advice JustJane37 , waiting for further testing is a hard game . Hopefully some of that anxiety will be lifted away . It won't help me to let my mind run amuk . I have been keeping busy , doing the every day things I always do , keeping my life on track as best I can.
I have found that most people without this have a hard time fathoming the depth of it and the pain that comes with it . I woke up with a 'normal' 8-9 attack last night - I turned on the weather and saw a large storm front moving in - go figure - That has been the norm for years , I am waiting to get the MRI scheduled so I can see if there is some explanation and just move on from there . It is a Beast !
The meds seem to be helping to at least cut off the problems faster and sooner than nothing at all .
I was at first very worried about the future , now not so much , why worry about what I can do nothing about NOW.
One day at a time .
I don't think after the TN diagnosis you are sane anymore whether it be from the constant pain or the pills we are on. I had to hit bottom with this to really wrap my head around what was happening to me. But I am able to still workout and run and this helps me.
/\ No kidding ! I still work and do most things . When up and moving things go better mostly... I do notice that my memory is slipping , usually impeccable , I just pushed some buttons at the VA office to try to get things moving , Was looking around for local Neurologists. And came up with some funny things . "These people are animals , just want your money , keep you coming back time and time again and do nothing for you" was one review.
I feel like I am navigating a treacherous path along a cliff , I hope I don't fall off and lose myself in this.
My problems come and go , the anxiety of wondering when the next crippling bout will be can sometimes get to me .
But I really feel bad for those who don't get a break from it. The constant pain of this nature would be horrible .
Its hard to say it , but I feel lucky that I only hurt some of the time .
My heart goes out to those who suffer all the time.
Hi Blessed no matter what, although I do not share your faith, I do respect you right to it, I follow Buddhist principles, and find the peace and tranquility I need through reading about Buddha, his life and teachingsā¦
I practice Yoga, and Tai Chi, I try and live a peaceful lifeā¦ Not always possible I realise.
unfortunately my MVD was not successful, but there are some wonderful results, and it was the best thing I ever did, and would do it again in a heartbeatā¦ The pain is definitely lessened since the operation, I donāt have so many pain breakthroughs, I hope your up-coming operation is a great success,Iām sure it will be, this disease is hideous, and I wait patiently for a permanent cure, hopefully one day,
This site is so supportive, and you can feel the love, best thing I ever did finding so much help and advice, love to all x
Blessed no matter what said:
Oh yes! I was in shock when the doctor said what it was. I am a floral designer and jewelry designer.
I had to stop working and now the medication has slowed down my creativity, It started off with a dull pain
in my ear then I thought it was a tooth so I had a tooth removed as time has passed the symptoms have progressed, now itās an electrocuted feeling on my left side , a burning scalp and severe head attacks, like stabbing piercing sledge hammer type of stuff going on.
I have prayed to the Lord when it gets severe and an amazing peace and strength overwhelms me, In it His message to me is that His grace is sufficient for me. I will be healed and every day I ask for opportunities to share with others about His love.
We donāt always know why things like this happen , but itās all for a reason. Please surround yourself with people who will encourage you. Not everyone will believe whatās happening to you because itās not visible but understand there
only human and the Lord knows , I have asked the Lord to keep me from being angry or unforgiving towards them through prayer and he has blessed me with a heart of understanding.
At times I battle my feelings and question God but then again he draws me to Him and I feel peace.
Please know these are all amazing people here who will encourage you. Keep posting your feelings and pain.
We can get through this , Know that Iāll be praying for you. Jeremiah 29:11 Iām looking forward to having my MVD in
February and seeing how the Lord uses the Surgeon for my healing!
I am still fairly new to this, started mid september last year, so far I wouldnt say i have coped very well, i suffered pretty severe depression from december last year until fairly recently, i would put part of it down to the medication merry do round, i think they did me more harm than good. my moods were all over the place, one day literally skipping and dancing and full of beans the next day just a complete wreck. i seem to have snapped out of it now though and am trying to get my life back and learn my limitations, had mriās, seen consultants and neurosurgeons, pain management docs, GP, awaiting to see psychologist as surgeon said he believes its been caused by a traumatic event i dealt with 3 yrs ago (even though on one of the mri he did say there was a compression on the nerve but as far as he is concerned thats not the cause for my pain, awaiting a second opinion on that thanks doc!) so there is no surgical options for me. at the moment. i think the hardest thing to deal with is the uncertaintity, GP has next to no knowledge on this and constantly awaiting the next appointment with the supposed specialists, the next change to the meds, the next possible resolution, it never ends, there is always something around the corner that am waiting on that will hopefully resolve it. my pain levels come and go, currently having a pretty good run so just getting on with it as best i can. my bad days currently would have been very good days previously, its impossible to plan anything though as it changes from day to day. this is by far the hardest thing i have ever had to deal with, the thought of this for the rest of my life, am only 32, is rather scary. chin up and get on with though.
Definitly Keep your chin up Boris !!
I think you had a good phrase there - 'Riding a Merry-Go-Round' , but how do I get off this silly ride?
It does seem like that or also a 'Roller Coaster' Ups and downs , Thank goodness for this site as a place we can come and talk without being harshly judged . It has helped me a lot to feel like I am not alone in this . There is help out there , and there are people who care .
Iāve found, after 4 years of suffering, that the best coping method (for me) is acceptance and preparation. Iāve had an unsuccessful MVD, an unsuccessful gamma knife procedure and taken 14+ prescription medications. Try not to let it change who you are and what you do the best you can. If you love something keep doing it! Find a hobby, give back, take breaksā¦ Also, prepare yourself for situations that increase or bring on the painā¦ i stay prepared with a beanie, scarf and jacket at all times, never let my hair stay wet after a shower, use a soft bristle tooth brush, prepare soft meals and keep my pain reliever & water with me at all times. Hope this helps!
And donāt forget to keep trying meds and mapping your triggers. It really is important that we AVOID all pain and not just accept it, as having prolonged neural pain leads to permanent damage to pain receptors. In other words: more pain. Do not give up on treatment! Stay away from everything you know you can control by avoidance (for me: noise, computers, my phone, harsh lighting, pressure and a/c). Keep in mind what releases you and DO IT. Acceptance is also to accept that you donāt have to suffer as much as you may thinkā¦
I think your point about mapping is really true. Ive just been diagnosed. I had a real tough December with excruciating pain. I need to know what may cause it. Plus Iām scared about when the next one comes along
Thank You ! Pav - I have been keeping a daily Log of episodes now and barely go a day without some sort of issue. The tegretol has definitely kept these to a minimum . I have found some (new to me) triggers and am not so happy about these but it seems that excess laughter and prolonged talking will bring on an attack. Its like working my jaw and cheek muscles a lot will trigger this now . Also the large heat vents where I work will set off a burning in my sinus ?? That leads to pain in my maxillary . And possibly even just walking down the Household chemical aisle with all the mixed smells can be a trigger. I can't avoid some of these all the time . But being aware of what has been happening around me helps .
I have been having some energy level problems , side effect I imagine , I have to force myself to do what used to come easy. But I am also doing everything I can to keep my stress levels as low as possible .Not worrying about when the next attack is but also not letting the work issues get to me anymore . Supervising people and being a Leader has and can be very stressful , I just force myself to relax a lot more than before.
I have to get through another 3 weeks till MRI then can move forward from there.
@Pav a lot of people will get initial problems set off by the seasons (cold especially) from what I have read . I don't know your location but that could be part of it.
Hi Brenda, has the pain decreased or the number of attacks decreased since your MVD failed? What meds are you on if any? Were the cold and wet hair triggers before your MVD or started after the MVD? I'm looking into getting an MVD soon and still researching it as much as I can and any information would be greatly appreciated. I wish you all the best.
Brenda Morrill said:
I've found, after 4 years of suffering, that the best coping method (for me) is acceptance and preparation. I've had an unsuccessful MVD, an unsuccessful gamma knife procedure and taken 14+ prescription medications. Try not to let it change who you are and what you do the best you can. If you love something keep doing it! Find a hobby, give back, take breaks... Also, prepare yourself for situations that increase or bring on the pain... i stay prepared with a beanie, scarf and jacket at all times, never let my hair stay wet after a shower, use a soft bristle tooth brush, prepare soft meals and keep my pain reliever & water with me at all times. Hope this helps!
Ok,all that sounds good and alot of it works. Then what, was released from the hospital due too WAY MORE TN PAIN THEN I COULD HANDLE ON CHRISTMAS EVE.I had 3 pretty good days,meds. were all straightened out a couple new ones added. Then all ---- broke loose I came down with the flu,messed up meds. again!Then caught a cold to go along with everything else.I have been managining to be pretty non fuctioning since the 1st of the year!! Everything around me is a BIG MESS!!! NOBODY SEEMS TO NOTICE BUT ME!!! Makes me want to cry but I am in too much pain and too weak from being so sick. So to put it as nice as i can, before i want to rip someone's head off (doesn't matter who's generally) and poop down there neck!!! Ya all have any other suggestions? Sorry, really having a rough night! Thanks, Dawn
Hi Dawn, Iām so sorry your pain is horrendous at the moment, weāve all been there at one time or anotherā¦l am on so many meds at the moment, that I might very well be in terrible pain but I canāt feel a thing, they are my life saverā¦as I couldnāt stand the pain any longer. The only thing is Iām so confused I canāt think straightā¦
Iāve found that I have to take my meds dead on time, same time everyday, I even set the alarm during the night just for my pills.
Are you considering an MVD, donāt hesitate, if your a candidate get it done ASAP, best thing I ever did, mine didnāt work unfortunately, but there are many success stories, so give it a goā¦
I hope you feel better soon, you sound like your in a bad place, I wish I could get rid of your pain for you, Iāll be thinking of you, let us know how you goā¦
Keep talking to all the wonderful people on the site, thereās lots of advice, support and love here
Hugs Anne
Thanks Anne,yes i had an mvd in 2006 mine also failed and made matters worse, had a great surgeon Dr.Casey, also had a faied gamma knife in 2004. I have had tn for over 20 years.Tn1 and2, tmj and migrains.I guess I am just having a pity party tonight.I have been way worse off then this. Juust need someone who understands. Thanks so much for your reply. At the moment i feel like i am in this all by myself. The pain istoo great to sleep, canāt eat because the worst of it is in my mouth,Iām sorry, but this really SUCKS!!! SO sorry your dealing with this also but SO glad you are here tonight!!!Sure need someone to chat with.I hate being all alone when i am like this .Think i will try a strawberry boost on the rocks ( lol) thanks again ,sure i wiill be back soft hugs dawn thanks so much anne you just donāt know how much your post meant!!!
Morning Dawn, Iāve read some of your past messages, and youāve been having an horrific time for a very long time, do you ever have periods of no or little pain, or is it like this constantly??
I have heard some girls have had success with Botox, I donāt know if thatās an option for you (expense) itās not available here (in Australia)
I think itās the worse thing in the world when professionals or even family donāt understand what we are gong throughā¦ We all need someone who cares, a kind word, a hug, it doesnāt help the pain, but mentally it helps somehow. Have you got close family nearby?
I so wish there was someone for you? You need a whole new medical team, GP, Neurologist etc, in another city maybe, (although I donāt know where you are, and how easy that is)ā¦
Honestly Iām sitting here thinking (as best I can) of a solution for you, we are all in pain, but yours sounds incredible, and youāve had this hideous disease for so long, you sound weary, I wish I could take your pain away, for one day even, so you could have some peaceā¦
Look into Botox!!! Who knows it might work?
Many hugs Anne
Thanks Anne,yes i had an mvd in 2006 mine also failed and made matters worse, had a great surgeon Dr.Casey, also had a faied gamma knife in 2004. I have had tn for over 20 years.Tn1 and2, tmj and migrains.I guess I am just having a pity party tonight.I have been way worse off then this. Juust need someone who understands. Thanks so much for your reply. At the moment i feel like i am in this all by myself. The pain istoo great to sleep, can't eat because the worst of it is in my mouth,I'm sorry, but this really SUCKS!!!!! SO sorry your dealing with this also but SO glad you are here tonight!!!!Sure need someone to chat with.I hate being all alone when i am like this .Think i will try a strawberry boost on the rocks ( lol) thanks again ,sure i wiill be back soft hugs dawn thanks so much anne you just don't know how much your post meant!!!
I second the motion Dawn !! It makes my very sad when I hear of people who have constant pain .. I do get a break from it for now quite a bit. I do know how bad it can get so I really empathize with you .
I find myself frequently entertaining the thought ( though I am not religious) about the story of Job in the bible.
'It is as if those of us who love life are being tested to see if we can be made to hate it '
Don't let 'the man' break you down.
I look forward to the spring and watching my gardens grow. While my winter Orchids bloom !
See the pictures'
[img]http://i.imgur.com/hq6XumL.jpg[/img]
[img]http://i.imgur.com/TdzZIRT.jpg[/img]
[img]http://i.imgur.com/dBTOukg.jpg[/img]
Thanks Anne and VIP,by the way I loved your pics.although this mi. weather is killing me pain wise.Today is a little better then yesterday,just depending on the moment.It is the burning and boring,aching,and throbbing inside my mouth in my gums, jaw bones,deep inside my ear,my nose,that I am having so much trouble with.My tougne and down my throat isnāt to bad today, although my lips have burnt all day. I am so sorry i sound like such a whine butt.I should be counting my blessings and I am struggling to do that.I came very close to ending my life last winter and I guess GoD had other plans phenobarbital saved my life for real I know it is a old med. but sometimes new is not always better. This past Nov.i didn,t think I could go on any more and the cream, Gallixa was a GoD send,so is the founder Larry Bernstein, now if we can just find something for inside my mouth but it takes millions of dollars.Well I have went on for long enough now,but this does help when you do have someone else to talk to that understands this HORRIBLE disease. Thanks so much to both of you . Soft hugs dawn