Everytime I try to figure this out I get really frustrated.I have visions of myself throwing a childish tantrum in my head because I can not find an answer.I have not had a good year healthwise.I do not recal how my facial pain has been,I do not always keep a record and tend not to dwell on it.But recently it has got to the point where I can not ignoy it.My glasses even though light weight drive me nuts,I've just upped my nortryptline to try to mask it untill I can get some feather light ones.They are expensive and I need a new dental plate first.I'm pritty sure my dental plate aggrivates my pain in the jaw area.Which is interminant and ramdom.Usually dull throbs.My two front teeth which have always stung on and off are really getting on my wick at the mo.I suspect they are complaining about the cold at the moment.I have tinatus and lying (and falling asleep)on either side causes intence pain like an ear infection (if you covered your ears with your hands that is the area of pain)which will usually last several hours.
I also get what I thought were ice pick headaches.which are recorded as being random and not caused by triggers but mine are caused by movement.Can't get much info on those.Intencity 1 to 10 and are sudden and unpredictable.They seem to be in the occipital area.I'm also getting some discomfort at the back of my head that comes and goes.
I do remember as a younger teen going to an ostiopath who cricked my neck due to such INTENCE pain in my head.Nothing would relieve it.Couldn't put my head down or in any position that eased it.It worked but still get it now on and off.
Can't stand noise and lights,the cinima is hell on earth for me.Shame as my partner loves it.
So the only constant is the cold.
I just feel like I have ether a sinus infection or an earache,toothach or jaw ache or head ache or neck ache or maybe two or three of them at the same time.
I mentioned as much as poss incase anyone has any imput or info.
Mimi: are the doctors giving you much hope regarding your upcoming MVD on your type 2 side?
Mimi said:
I have Type1 on my right, and type 2 on my left. However recently I am experiencing classic TN1 zaps on my type 2 side. So weird.... I have well defined triggers on my type 1 side, ( talking, brushing teeth, eating, washing face etc) BUT on my type 2 side not very many triggers that I can define except for cold air, talking and vibration. I had no dental involvement... I also experienced an 8 year remission of both TN1 and TN2. It can happen! My upcoming mvd will be on my type 2 side...as this is the side that is resistant to meds since September.
Jacksharky, write to Red directly as It could be all your problems relate to TN. I can relate to the ear and the glasses problems. Red is usually good at writing back to you. Your marathons are very impressive with or without TN! xx
My neurologist, when we discussed mvd said he didn’t think any neurosurgeon would perform mvd on my type 2 side ( which is the one resistant to meds since September) based on his experience, but I told him I would still like a referral because I wanted to know why and hear it from a neurosurgeon.
So he referred me to one of the best here in my city.
I was surprised when the ns said he would perform the mvd but he issued no guarantees.
At the time my TN2 on my left side was just TN2.
Now I am getting both TN1 and TN2 .
My second opinion was with a neurosurgeon in a different province, one who studied with Dr. Janetta and is well known for his knowledge of TN and involvement with TN research and support.
We consulted by email and telephone, he made his decision based on my neuros medical record of me and my description of my TN as well as my last basic mris taken last June.
Although TN 1 has something like a 90-95% success rate, TN 2 is more like 73-78% success rate. ( don’t quote me on the percentages, but there close)
In my opinion, I think most neurosurgeons really don’t know what they’ll find until they go in…
Because my quality of life has significantly deteriorated I chose to research mvd and feel very comfortable taking my chances at this point. If he goes in and finds nothing, no compressions etc then he his to just close me up and not touch anything. We will then plan to do mvd on my right hand side in a years time.
Now that my TN2 side is also presenting TN1 as well, I feel my chances for success are greater.
I should say my measurement of success is > pain managed by low dose meds.
Ultimately I would like to be pain and med free but I need to be realistic in my expectations .
I am heading into mvd with my eyes open, hoping for the best , just grateful for the opportunity to possibly be free of this hell.
I think too many neuros deny type 2 TN patients the opportunity to explore mvd based on their limited knowledge …they are not up to date . I posted a study on my wall, under my blogs that ALL TN2 patients should read…mvd can help type 2 patients.
We are all unique in our pain so of course we can’t generalize, but I feel each one of us should pursue all avenues and really ask WHY this or that procedure is being denied to us.
Research, research, and be your own best advocate.
My mvd will be anytime in the next 7-8 months hopefully sooner…
Mimi xx
JackySharky, have you ever been on Topamax?? Some of the symptoms, you are describing I've had in the past... I no longer have since I've been on it. If you have never been on it. Might be worth asking your Doctor about it for the light sensitivity and ice pick headaches. The light always bothered me before - like a bright overhead in the room couldn't take it before or at night driving oncoming headlights. Now that doesn't bother me anymore since I've been on the toppamax. Then I remember when he tried me on Tegretol it got REALLY bad I walked outside and the sun WHOAH!!! So that is when I started taking the topamax. But I had other isssues with the Teg so I couldn't keep taking it. I mean sometimes I been having some twinges of ice pick headache but I've been under extreme stress lately. I do pretty well, mostly I have ear pain right now. :(
My neurologist, when we discussed mvd said he didn't think any neurosurgeon would perform mvd on my type 2 side ( which is the one resistant to meds since September) based on his experience, but I told him I would still like a referral because I wanted to know why and hear it from a neurosurgeon. So he referred me to one of the best here in my city. I was surprised when the ns said he would perform the mvd but he issued no guarantees. At the time my TN2 on my left side was just TN2. Now I am getting both TN1 and TN2 .
My second opinion was with a neurosurgeon in a different province, one who studied with Dr. Janetta and is well known for his knowledge of TN and involvement with TN research and support. We consulted by email and telephone, he made his decision based on my neuros medical record of me and my description of my TN as well as my last basic mris taken last June. Although TN 1 has something like a 90-95% success rate, TN 2 is more like 73-78% success rate. ( don't quote me on the percentages, but there close)
In my opinion, I think most neurosurgeons really don't know what they'll find until they go in.. Because my quality of life has significantly deteriorated I chose to research mvd and feel very comfortable taking my chances at this point. If he goes in and finds nothing, no compressions etc then he his to just close me up and not touch anything. We will then plan to do mvd on my right hand side in a years time. Now that my TN2 side is also presenting TN1 as well, I feel my chances for success are greater. I should say my measurement of success is > pain managed by low dose meds. Ultimately I would like to be pain and med free but I need to be realistic in my expectations .
I am heading into mvd with my eyes open, hoping for the best , just grateful for the opportunity to possibly be free of this hell.
I think too many neuros deny type 2 TN patients the opportunity to explore mvd based on their limited knowledge ..they are not up to date . I posted a study on my wall, under my blogs that ALL TN2 patients should read...mvd can help type 2 patients. We are all unique in our pain so of course we can't generalize, but I feel each one of us should pursue all avenues and really ask WHY this or that procedure is being denied to us. Research, research, and be your own best advocate.
My mvd will be anytime in the next 7-8 months hopefully sooner... Mimi xx