Please read this, please

General General TN & GPN (Old Site)
1

Good day everyone.

I am not having a great day with my TN. Earlier just talking to my friend (our boys were playing together) I started crying. She was confused, so I explained everything.

So, tonight I have begun my own research. I have a science degree with a minor in prenursing. I am going to back to school in 2014 (when my youngest turns 3) to work on my masters in microbiology. I plan to work on this as much as I possibly can. I already have four pages of information (including information from my medical books).

I know TN is a very rare condition (albiet it seems it is being diagnosed more, anyone want to take a gander as to why?). We do not have a lot of money going into research for our condition. As I have seen more anticonvulsants are being tested on effectiveness as treatment.

But, I am tired. I have had this disorder for four years, but it's the worst it's ever been. I feel no one can help me or wants to help. Doing research gives me hope that maybe I can figure something out. SOMETHING!

My heart breaks how I've been treated by my neurologist. I cant take it. It is not normal or natural to leave anyone in pain. If he said monkey poo would relieve my TN pain I'd have poo face. Maybe I should take the 5-6 drugs he wants me to and miss out on my kids life. Ive tried EVERY drug thrown at me and some help.. others didnt. I am at a breaking point.

I just want to fight this and I want to win. Winning isnt a cure, there isnt one - I just want to be able to eat like normal again, laugh with my kids, brush my teeth, TALK, enjoy a good breeze.

My heart goes to you ALL. I have never experienced such pain in my life. I hate to complain (my last three posts were venting pretty much) because its not in my nature. I just want to help you ALL. I know how this condition affects you and it breaks my heart sometimes.

I know some people have had successful medical treatment (pharmacology) for TN symptoms and I think that is AWESOME. Others have had successful surgical treatments albiet "maybe" temporary. Others have tried homeopathic measures and have results. What about the rest?

We are not alone! YOU are not alone.

2

Kismet, thanks for posting this. Tonight has been a bad night for me also. Been up and down all night with Sharp pains in my throat that make me feel like I’m Chocking. I try to stay positive too but, there are times my TN is so bad it is impossible and am certain that my kids and husband would be way better off without me. My family went to the fair last night and I was stuck at home because it was too cold for my face to bear. I did go for a nice run earlier in the day. I keep running even if I don’t do anything else. It makes me feel alive and proves I’m still fighting. I had to get my nerve stimulator removed due to infection and these have been the longest weeks of waiting to get it back in Sept. I did have something that gave me some relief and it was removed. It is encouraging to know that there is some hope coming for me to have decent pain control again soon. I pray u were able to sleep and that u wake up revived and ready to fight the beast for one more day!! Keep hope that someday u will find something that works for u!! ((HUGS))

3

Oh girl how I feel your pain! I have had TN since 2007. I have tried every drug they have given me with no relief. Recently had a Trigeminal Block with no relief. Have not had MVD. Missing out on so much of my grandchildrens life. I feel so bad when all I can do is lay in bed with the heating pad! This does get worse with time as it has with me this summer. I will be thinking and praying for you today that you will get some rest. I understand about the monkey poo! Me too!!!!

4

I wish I could help :) As I can only offer support and care then I will send you a big hug and agree with you. I have said before if I could eliminate my TN pain when it is atrocious by eating my own arm, then, well guess what..........................

5

I am so sorry. I know how much I hate having my life controlled by TN. It controls what volume I watch TV, if I drive down a beautiful but bumpy country road, if I sit and have my coffee on the deck on a breezy day, etc. I do understand. As I read this I was just beginning my own research on taking Cannabis Sativa Seed Oil to help with the pain. mayo clinic support the use of this product for chronic pain. I have never taken any drugs recreationally. I garden organically, eat a diet with limited gluten, am aware or the benefits of a reduced meat diet and so forth so I really struggle with putting an anticonvulsant in my system. It so goes against my life style. That being said so does constant pain. Have you considered taking this oil at all? Like you said, we are not alone in this. Stay strong and know that you do not walk this alone.

6

I was reading about the five stages of grief - denial, anger, bargaining, depression and acceptance. While these aren’t chronological or all people go through the five stages of grief I’ve gone through all.

It’s just … No man (doctor) should have the right to strip any of us of our dignity or hope. I sometimes wish treating neurologists would visit this site to see what TN suffers are going through.

Sadly, most neurologist have heard of TN, but not treated it or they’ve only treated a few cases. Not everything works the same for all patients. I understand there is a treatment protocol for TN (there’s one for every disease/disorder), but we’re not all the same.

I know there are medical benefits to marijuana. Is the oil applied topically or injested? My mom had stage IV cancer and marijuana helped her pain, appetite and mood. However, she did not like the feeling, so she quit. I also have a friend with severe scoliosis and it helps her tremendously.

I know healthcare is big business. I know more money goes to conditions diagnosed regularly (depression, diabetes, hypertension) because more pills sold equates more money made.

I also worry about misdiagnosed/undiagnosed TN patients.

Maybe if I can get letters from every person on this site and send them to the right person they’d see us!!

7

This oil is ingested. Suggested dosage is 1000mg three times a day. Almost ready to try it.

8

I hear ya Kismet.. I hear you. It's not fair.

9

Kismet.. I hope you are having a better day today. I totally understand what you are going through. How do you explain to someone that this is not a psychiatric illness? Friends/family shy away from things they don't understand. I wish they could just get it.

10

There is the TN Association - which gets funding $$$ I think

That's where I found my surgeon - and a local support group

Have you tried Topicals of any type?

Have you insurance for an MVD?

11

Hi Kismet,

I understand the pain and the neurologist thing. I have TN, for probably 3 years, although , officially 2.

I decided I can't do life on these meds, the anti-convulsants make me so tired & brain fog, hard to pull up words etc. I also have children My oldest is 11 my youngest just turned 6 this month. It kills me that I'm missing so much, I'm so tired & they want to play & go to the park & have "mommy dates" with me. I'm 44 now and I feel like I'm totally missing out on life.

Yesterday I went to see a neurosurgeon , after having MRI, to look at surgical options. I came out having HOPE !!!! For the first time since the pain started. I'm scheduled for an endoscopic micro vascular decompression in two weeks. The neurosurgeon was so amazing in the way he interacted with me a educated me on the history of TN and different surgeries etc. I'm a R.N. specializing in surgery (for 20 years now-eeks) so I have done tons of research. I can't live the life I want on or off these meds. so I'm opting for surgery.

regarding neurologists...I'm on my third one. they have the worst bedside manner, seemingly cold ,unfeeling,depressing (because they give no hope). I agree with you so much about neurologists. This one (my third) is the one who sent me for a consult with the neurosurgeon. Praise God!. and I actually was able to converse with him...amazing. So there are Neurologists out there that don't want you to remain in pain or in a fog. If you can..consider MVD. The success rate is close to 90% totally pain free- no meds at 10 years out. To me, those are statistics that are worth the risk - so I can enjoy my children WHILE they are children!

Good Luck to you. I will be posting after surgery- September 10th. Although It may take me a few weeks:) Hang in there, you don't have to make everyone else feel better all the time. It's wonderful that you care so much, but you also need and deserve empathy and hope. Even if you don't get it from the neurologist!

Take care-

12

I understand and I wish I was a scientist and could somehow help you. I"m 27 and so far I've been taking tegretol for about a month now. Right now i'm okay I still get the strange TN pre-tingle when a breeze blows in my face. I still wash my face like it's made of porcelain and do nothing but worry about the future I know will come.

I know this is just the calm before the storm and I know that one day it will be unbearable and I'll have to worry about all sorts of new things. Who will want to marry me like this? I can't exercise or run with out thinking that my body is going to attack me. UGH! This is so unfair sometimes, I keep saying why me? Was it something I did when I was younger? Was it genetic?

It sucks that no one knows how I feel. It's nothing you can see or touch or experience yourself unless you are part of the unlucky 15-20% of the population. I feel so alone all the time and depressed. Sometimes I feel like staying in bed forever, then I realize that I can't hide from this.

This week has been good, I've been out with friends having a good time, even though I can't drink any more =(, but that darkness is always looming in the back of my mind that at any moment for no reason at all it will be back. Perhaps even more painful that before and it's not even an if it's always a when.

13

I feel the same way. My poor kids. The guilt from not even being able to go out to the park with them and play makes me feel horrible.

14

Thanks for posting this ... I really needed to hear that I am not alone at the moment though I wish other didn't know this pain. I am reading this because TN has made a re-apprearance in my life and I know the people here understand the pain. Hope you're having a better day today :)

15

Ditto here. The nice cooler days with the beautiful fall breeze just about killed me yesterday. I am recouping from a different surgery needing to walk, and low and behold TN decides to join my on that walk without being invited. I can only offer support letting you know that you are not alone. I have been told my kids will grow to be more compassionate, for that I pray. May you not give up the fight, may you not feel alone, may you find courage in the small victories you attain over this that is trying to control you. blessings and big hugs~~

16

Shepherdgirl..i feel ya on the uninvited guest.. While I hate that is has been soooo hot all summer. I am scared of what is to come this fall and winter.

17

Hi everyone, I also have a similar story. 4 yrs., taking cabamezepene with some success. I was intrigued by Botox injections. Successful with migraines. 2 dr’s told me that it was not approved by the FDA for TN. Has anyone heard of clinical trials? I would love to be out from under the weight of these pills!

18

Thank God for this community, each one of us may experience our TN differently, but we have all felt the horrid endless pain and can relate to one another in so many ways.
I’m so grateful to all of you, I may not post much, but I read often. I wish I could be more supportive, it’s just been a very rough year…
Kismet, thanks for your post.
Laurianne, I’m leaning in your direction at this time in my life, your story above really resonates and I am sending positive thoughts as you approach your surgery date.
I see my neuro on september 12th, and will finally be discussing mvd with him.
I can’t do this anymore, and since my TN came out of remission I have gradually gotten worse and worse. My neuro told me this would happen, but being glass is half full kinda girl I didn’t believe it, well he was right…
I’m tired of the med fog, not being able to hold intelligent conversations, constantly fatigued due to break through pain and high med doses. Time to make a decision…
In any event, just wanted to commiserate and add that I am grateful to all of you for understanding and supporting one another.
((( hugs ))))

19

Kimet I am with you.

14 or so years I have had TN and although an MVD in 2006 helped a great deal its starting to ware off.

Every visit to my Nuro, Pain specailist or Surgeon I ask what "NEW" treatments are there for TN?

Bloody Nuthin is the answer.

Its seems every week I hear of some one new with TN either recently diagnosed Or they Hey you have that too?

Rare but somehow strangely common is TN.

A positive attitude is the most required but hardest to come by pre-requisit of staying sane with TN

I seem to have misplaced mine.

Must go looking for it.

Its around here somewhere,,,

Nuro's

I think they get a personality removal proceedure prior to getting the qualifications.

Nuro:This Drug, we will try- start here taper up then add mornings if no change stop your bloody whining.

Patent:Return visit- didnt work. Nuro:OK we will try its sister drug its almost exactly the same just has a different branch off the third tree so it has slightly less side effects in 3 out of every 100 test subjects try the same routine see me again in 6 months. PatientWait??? What about my Pain???? NuroWhat pain??

See you in 6 months

Paitent: $^@^^##%#&@^%#$*&^$@(&^$(&^$(^$%(&^$ OFF....

Hmmm ever had this experience...... Or just get the feeling they dont listen???

Seriously though Kimet I think its great that you will put effort into trying to crack this. The problem is for you I feel (Possibly) Is you will be focusing on TN so closly all the time and not be able to take your mind off it.

Thats the main thing that works for me is to try and NOT focus on it. Yes there is pain yes there are syptoms but I go (well try anyway) and do something else and see if not focusing on it helps.

Simon

20

Hi all.

Totally agree with Mimi’s post. I too am grateful for this forum of strong, wonderful people who even when struggling with their own pain the take time to offer hope, advice and support to others!

It’s so true that each one of experience TN differently, and yes we have all felt or currently feel the torrid and seemingly relentless pain that comes with this condition… which is why we do all relate to each others stories or cries for help just to get the reassurance that someone, somewhere understands.

I too do not post much, but I log in often to read stories and the encouraging and sometimes overwhelming unconditional support so many in this group offer to one another.

I wish I could post more - but the words would simply reiterate those that so many in this group say.

For me, it’s just been a very rough 10 months, I have type 2 TN, have had liver failure from a reaction to Tegretol, 5 operations in 8 months and now my husband of 10 years wavers between supportive and having had enough, “I’m over it, try harder, get better quicker, your always in pain, get a life it’s been almost a year now etc…” familiar words to so many I’m sure.

I’m trying to juggle a career and maintain my status at work (I’m a Senior Event Manager for a large corporation in Australia). My employer has been really super great, flexi hours, working from home when I need to etc… but it’s hard not to be physically in the office with my team each day, teleconferences and meetings at my house together with one or two days a week in the office is simply not enough. I feel I am not only letting them down but also can I in reality keep up this pace when there is no miracle cure? Neuromodulation operations have certainly helped to a degree - but the daily pain still exists, the anti seizure medications I still need to take - who wants a ‘brain foggy’ event manager on location?!!

Anyway, hoping to do my first full week back in the office next week… really looking forward to it!

I also feel I can’t do this anymore, but this site makes me want to fight harder, stay stronger so THANK YOU!

I am grateful to be a member of this group.

You are all inspirational and a wonderful network of people.

All my strength, compassion and love to you all.

Tomorrow is another day, who knows what positive possibilities are around the corner.

Steph :slight_smile: