Hello from a new member

General General TN & GPN (Old Site)
1

Hello everyone,

Thank you all for sharing your stories on this site. It is helping so many and has already given me a lot of information.

I apologize if I am not posting this in the correct place/way. I am not used to posting online so please let me know if I should go about it differently next time.

If anyone would mind reading my story and giving feedback I would greatly appreciate it.

Good luck to all of you!

I am a 36 yr old, Mom of 1. Before 5 months ago I had a terrific life filled with with family, friends, work, volunteering. Busy, sometimes hectic/stressful but happy.

For the last 16 yrs I have lived with C.I.D.P. Chronic Inflammatory Demyelinating Polyneuropathy. It is a neuromuscular disorder where my immune system destroys the insulation around my nerves in my peripheral nervous system (arms, hands, legs, feet) unlike MS which affects the central nervous system. Every 2 weeks I go to the hospital (Mass General -anyone else from this area?) for an infusion of IVIG. I have had great results with my treatment.

On 4/26/12 I had a sudden onset of a constant burning pressure centered behind my right eye/temple area that has not left me for 1 minute of 1 day since.

My neuromuscular neuro saw me and (now he and 4 other neuros) feel that this new issue is definitely not related to my CIDP and referred me to a general neurologist

So the new neuro began treating me with migraine meds since June. Immitrex, Maxalt, Relpax, Fioricet, Indomethicin (for hemicrania continua) Topamax (made pain worse), Nortriptyline (made me anxioius beyond belief and thats is not me) Amitriptyline, Perciset (a total of 15 of them, made me care a little less about the pain). Finally his associate called me back one day and said this sounds like neuralgia I am seeing my neuro on Wed to discuss TN type II and started me on carbamazepine but the day before I had also been put on a 14 day taper of prednisone from 70mg. So I am currently on both.

**I have only been on Tegretol since 9/19/12 so just over a week. started on Tegretol 200mg day and am now up to 400mg day. Dr says can be 600 day but at first dizziness and nausea were so strong that I am increasing slowly. 400 doesn't feel different than 200 in the pain department. Also (even on 200) started having vice clamp like headaches all over head which I never had before but this has been the 1st time the constant burning has been reduced so just dealing with side effects. Also a little afraid cuz Dr also had put me on a 14 day taper of prednisone which I will finish on 10/1/12 and I'm afraid that the reduction of the pain is actually from the prednisone and not the Tegretol and will all increase again next week. (just typing that makes me weepy). The every minute unrelenting burning pain has just been shocking to me.

I would love to hear how others have reacted to different meds and at what doses. I know everyone is different but I am just trying to soak up as much info as possible right now.

Also does anyone know any neuros good with TN in Massachusetts or the Northeast?

Is remission even possible with Type 2?

Thanks, I will have you all in my prayers,

Janice

2

Hi Janice,

Wow it is amazing the diseases that people deal with everyday that most people have not even heard of before. It sounds like you have your share of pain bless your heart. I have TN1 and TN2. I am fairly new here also. Only diagnosed 5 weeks ago. From what I have read...TN2 is more difficult to treat and does not normally go away. I am taking 600 mg of Neurotin 4 times a day and 7.5 of percocets every 5 hrs...the pain still sneaks through so I have resorted to cannabutter muffins for the breakthrough pain.It has really helped. I stay pretty pain free when I follow this regimen. I am trying to regulate it all so I am balanced in "Pain free vs. loopyheaded". That is the worse part, I get tired of feeling "not with it" and so I cut down on pain meds...then I get the severe pains that cause me to cry and vomit. I just try to take one day at a time and enjoy every minute I can. Anyway, I hope you get an answer soon and find yourself painfree. Yvonne

3

Hi Janice, I just joined today as well. I was diagnosed on Tuesday. i wasn't told which type. I am so sorry you are having to deal with ALL of this. I too got put on Cardamapezine. I pray it works. Like you, I have the constant burning, along with throbbing shocking pains. My dr. didn't prescribe me anything for pain. Let's pray this medicine is the one for us. I have done a little reading on here and so far it has been very helpful. Again, welcome and I hope you get answers.

4

i believe that i have more of type 2 than type one like in the beginning and i have been in remission several times i am also on a steriod at the moment because my dr could feel the inflammation in my face i also take a nerve blocker and just started Amitriptyline i went from may until about 3 weeks ago with no pain and no meds i am at a lost i am trying to research and have hope i am to young and i have two small kids good luck to you and you r in my prayers

Andria

5

You are still on a low dose of Tegretol so you have a lot of room to go up. It has some nasty side effects but hopefully get rid of the pain.

Email or call your doc and get a prescription for lidocaine patches, gel, or cream. If your health insurance pays for it, great. Otherwise get the prescription and get it mail order through Canada. It's pretty expensive, but helps some of the pain.

Also, there is clomazepam, tramadol and other drugs you can take with Tegretol. Some of the anti-depressants work with type 2. I have type 1 and the pain killers don't really work for me. I am on Trileptal 750 in the morning, 750 in the evening, 400mg of Tramadol 4xday, clamazipam 1.5mg in the evening and lidocaine gel to help with breakthrough pain.

We all have that afraid feeling of what if..... It's part of this thing. If the pain does increase, perhaps the doc can put you on a low dose of pred. But steroids are a nasty drug which is probably why the doc wants to get you off of them.

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Cannabis is legal in my state, could you email me your muffin recipe? I have such terrible nausea from the Trileptal that I'm thinking of using it. Tina

Yvonne said:

Hi Janice,

Wow it is amazing the diseases that people deal with everyday that most people have not even heard of before. It sounds like you have your share of pain bless your heart. I have TN1 and TN2. I am fairly new here also. Only diagnosed 5 weeks ago. From what I have read...TN2 is more difficult to treat and does not normally go away. I am taking 600 mg of Neurotin 4 times a day and 7.5 of percocets every 5 hrs...the pain still sneaks through so I have resorted to cannabutter muffins for the breakthrough pain.It has really helped. I stay pretty pain free when I follow this regimen. I am trying to regulate it all so I am balanced in "Pain free vs. loopyheaded". That is the worse part, I get tired of feeling "not with it" and so I cut down on pain meds...then I get the severe pains that cause me to cry and vomit. I just try to take one day at a time and enjoy every minute I can. Anyway, I hope you get an answer soon and find yourself painfree. Yvonne

7

You can use any packaged muffin and just substitute the 1/3 butter or oil with the cannabutter. I don't like it strong ...I only want pain relief. You can google how to make cannabutter. There are a couple of recipes on u-tube. I hope it helps. It certainly takes away the breakthrough pain for me.