You're Needed, Here!

OK. So you don't have the beautiful writing skills (as I), but you're still needed back here. Personally, I have only been here a dozen or so times myself in the past year. I usually go back when I feel rotten, looking for something – anything to give me a bit of a spark. Usually, if I start a thread there is warm, sympathetic feedback. But sometimes I'm just looking – trying to somehow connect. Consider yourself encouraged (I guess there's probably a better way to do this!). At least, consider yourself needed. You don't have to be a perfect writer. Don't wait until you have some great gem to share. Come around, leave your "two-cents." Who knows, that two-cents could help someone else through a dark night, or at least encourage them to speak-up. I know it does for me. See you soon…

Your Partner in Type II TN,

Dennis (a.k.a. Henry)

Ok so here's my update, I have been diagnosed with probable type II My recent visit to my 3rd neurologist ended with him ordering another MRI specialised to trigeminal nerve to be then referred to neurosurgeon to discuss options for surgery if any.. He also upped my dosage of Noritritiline (from 40 -80) i am currently at 60. Gabapentin to 500mg 3x a day, with the allowance to 600mg 3x a day. At first it took a couple of weeks to settle down and for the first time in a long time I had relief from the pulling in upper jaw teeth and intense pressure boring to my skull feeling (in left side only).This lasted a few weeks which I was so grateful for, I could still feel low intensity pressure ache but was happy, smiling, playing with my kids again. Now I have upped my dose to the 600mg and am hoping it will work again but am worried even if it does', will it only be a brief time again? I can't go up anymore, and he didn't give any actual pain relief for the mean time? This appointment was almost a month ago and i'm not expecting to have MRI anytime soon, the public system here is so very slow. Does anyone have any advise? What does everyone else take for pain relief? The Panadol I was prescribed 7 months ago obviously isn't even worth bothering about!

Hi Emily, I have had the same type of pain but on my rt side. I never really found a relief for it. My meds would work for a little while tegretol and lyrica then would need to be increased. I just had to MVD’s in one week. I’m on my second week of recovery. Neurolysis was performed so now my teeth are not aching but are numb along with half my lips. I knew it would be a trade off but it takes a little time to get use to. Oh! I can now move and touch my nose! It’s been 2 yrs since I could do that without shocks of pain. I’m still not sure about the boring pain behind my eye. I can still feel it but it’s not quite as intense. My surgeon is hoping in a few months it may go away. In all I have had 3 MVD’s and tried gamma knife.

My reaction to gabapentin was similar. At first, the lower doses worked, but the pain found a way around it. Still, I've been on it for ten years and I'm taking 4800 mgs daily, but have gone as high as 7200. It helps to keep the constant pain down and I think it helps to keep the terrible beast of 7-8-9 level pain at bay. My doctor didn't think the mvd's would work with me, but I have two nerve stim implants. Neither has really done much.

I have just upped my dose of gabapentin from 1500 to 1800mg/day my doc told me to keep going up each week until i found relief. She told me the max dose is 3600mg/day . But i also increased my amitriptyline from 25 to 50 mg.... so it could be the combo. i have read that most people will build up resistance to their meds so i am saving all the other ones ( lyric, tegretol, trileptal ) until this no longer works. I am lucky and have only mild side effects, mostly fatigue, at this dose. Oh and wt gain !! grrr oh and obviously a positive outlook if i still consider myself lucky - ha ha LOL

Thanks everyone for your stories, especially considering the medical professional's I've experienced as a whole just have no idea how to help *as they google* we are all our best resourse. I try very hard to keep up a "normal" day (I have 3 kids under 10) and try to remain focussed on being grateful for what I do have and reasonably optimistic that there is a way to get through the pain and often miserable times that I'm experiencing. It has been less than a year since symptoms began and the idea that this will be forever is daunting It is good to hear others experiences too. I realise I am "lucky" it's not Typical TN but the every day battle with little relenting pain is hard work!

It is hard work, isn't it? I've never sailed, but I picture myself on the good days, with my sail catching the nice wind and riding it as far as I can! I worked (teaching college writing) for eleven years with this, and finally quit 10/12. I think I was better off working, but so it goes. I was denied disability the first time and in the process of appeal. There reasoning: "You worked eleven years with this. We think you can still work." Haaaaa! Sometimes, you just gotta' laugh! Good to hear from you folks!

Thanks, Jamie. Welcome back!

Jamie said:

I love this post. The message is simple and genuine. I would like to add that those vampires like myself, who sleep all day and only come around at night, to get on too! ;-) Actually, since I've retired early on Teacher Disability, I totally have my days and nights mixed up. It will get back to normal. I'm just thankful that I CAN sleep during the day instead of barely making it at work.

This post was inspiring. Thanks so much! It made my day! I...mean Night! :-)

Hi Dennis/Henry,

I'm pretty new here but not to ATN. I've had it for about 15 years. Meds have worked for me most of the time but lately not so well. I have to admit that I went to a party on Friday night and had such a good time I may have forgotten my meds that night. I've been in severe pain since maybe Sat evening or Sun morning. So more meds than usual and now I'm not only overmedicated but depressed as well. Hence me being here. I'm thinking very seriously of trying medical marijuana (the kind for pain relief not getting high) Sooo, if anyone has had a positive experience with it please let me know. I have had another kind of treatment too but since I have no memory and my husband is not here to ask, I'll leave that for later. Anyone with any ideas??

Yes. I've considered it. But living in Pennsylvania and seeing my doctor in Ohio, I would need an act of congress to make it happen.I know about some depression as well. After 13 years and virtually no significant improvement, it's hard to stay positive. I have an appointment for October 9th at Johns Hopkins, but not expecting any miracles. Funny you should mention the party Saturday. I went to one, too, and had a great time.

I forgot to ask if anyone has tried Upper Cervical Spine Chiropractor? We have a good one here and I've been helped by him. I went Monday and am going back Thursday. Hopefully he can get me out of this.

C

Henry, do you happen to know anything about the Jefferson Clinic in Pittsburgh. I was referred their by one of the many neurologist I have seen.(not that I could do that due to ins.) This one happen to be at the U of M. There is a new Dr. joining the neuro science group at Henry Ford, she is a surgeon that deals with nothing but tn, she is suspose to be the Dr. when all else fails. I have been told by 3 neuro surgeons not to have anymore procedures or surgeries done.I sure don’t think. at this stage of the game it would hurt to at least talk to her and get her ideas.I sure hope they can find something at John Hopkins’s that will at least lower your pain level as in mycase it is far from gone but my combo of fairly new meds. I am also thankful that my nights are better then my days and so who wants to go to bed when you feel good? Yeah, one of new meds.is making me a little groggy also maybe will get better with a litttle more time. Didn’t mean to go on like this. Wishing you painfree days. Dawn

Hi, Dawn. Thanks for the nice note. No, I don't know anything about them. I know what you mean about "going on...." It's good to know someone else understands a bit of our ailments and we don't have to worry about whining. Anyway, I'm glad you're getting at least some relief. I may have to do something before my October appointment because my days at The Cleveland Clinic seem numbered. The last few times I've gone, I've been treated like a druggy. Ohio legislators have been "watching the pill mills" and all the staff seems to be scurrying to avoid DEA attention. Gott'a love it when politicians get in the act. Yes, there are accidental overdoses, and sure there are some severe side-effects to any meds used in high doses, and certainly there are a lot of lawsuits and fingers-pointing. BUT -- the clinic and all the younger staff seem to be practicing a Cover My Behind method. OK. I'll stop here before I get my blood pressure up any higher (talk about rambling. Haaaaa!).

Thanks for the great invitation. I too only come here on those dark and futile days, or when I am looking for something specific. But you are right, someone's "two-cents" may be a life saver for another. I know that has been the case for me. We are not alone. So here's my two cents: help spread awareness about this wretched disorder by buying a lovely turquoise wristband for Trigeminal Neuralgia, You can order by sending an e-mail to Nikki Samuel at ■■■■■■■■■■■■■■■■■■■ (I forgot the exact price, but I ordered 5 and the charge to my Paypal account, including shipping was around $31 US, as she is in the UK). Also if you are on FaceBook, there is a lovely picture you can put as your cover page to spread the word that October 7th, 2014 is International Trigeminal Neuralgia Awareness Day.

Spread the word and raise awareness, so we can get more research done on our behalf!

Fran

Thanks, Fran. Yes, the awareness is critical. There are far too many people, including health-care professionals, with little idea about this. For example: the Cleveland Clinic refuses to call my malady Type II TN. Instead, they insist on "a-typical facial pain." I really don't care if they call it "Land of the Bunnies," but I'm having my SSD hearing this October, and this broad application may again cost me and keep us in poverty until I can refile! Anyway, thanks for the info. on the wristbands. I will look into it.


Ah yes, the world renowned CCF...been there & done that! They also insisted on calling my pain atypical...even though my original diagnosis with Dr. Peter Janetta (who did my first MVD) was TN type II. Had my second MVD at CCF 9 years after the first, unfortunately it was only successful for 9 months. The care I got in Pittsburgh (especially post-op) was aces compared to the horrible care I got in Cleveland. I was treated like a number instead of a person.

Good luck with your SSD hearing. Wishing you the best and pain free days ahead!
Henry said:

Thanks, Fran. Yes, the awareness is critical. There are far too many people, including health-care professionals, with little idea about this. For example: the Cleveland Clinic refuses to call my malady Type II TN. Instead, they insist on "a-typical facial pain." I really don't care if they call it "Land of the Bunnies," but I'm having my SSD hearing this October, and this broad application may again cost me and keep us in poverty until I can refile! Anyway, thanks for the info. on the wristbands. I will look into it.