have had this now for 7 months straight, both type 1 and type 2. not had a really bad flare up for few weeks now, just constant ache, teeth, jaw, temple, ear, cheek, eye. awaiting on neurologist appointment, nothing any time soon. still waiting to hear from the hospital, doesnt look like its gonna be within the 18 weeks time frame, none of he meds have done much if anything apart from make me incredibly grumpy. and now to top it all off my wife has told me she cant cope with it anymore! i am fuming, feel so let down. like its not bad enough got to deal with this condition 24hrs a day, tthe person whose support i want more than anything is looking to bale on me, i really feel like giving up
Hi Borris!
I'm in the same condition as you. Only I have seen the neurosurgeon already. But because there's no any compression shows on my MRI, nobody is really interested to sort out my case. I was told : "You're not our patient". But whose then?
Dammit! I live in pain...
I wish you to see your neurologist soon. And I wish your appointment will be much productive than my was. Hang on in there!
Ann
P.S. And I really really hate my face too!!!
Oh gosh Borris,
I hear you. Don't give up hope. TN can have remissions, and there are so many different medicine combinations that can be tried, different ones help different people. My husband left me after my third trip to the emergency room for TN. I wanted to die, but 16 years later, I am still here and I do get remissions for up to a year at a time. Maybe marriage counseling will help her understand, and we have to remember that just because we are IN pain, doesn't mean we have to BE a pain. It's very easy to drive others away if we aren't careful about our words and actions when we are in unbearable pain. You can apply for disability if its the financial problem that is getting her down.
Best wishes!!
Sheila
Awwwww, Do you have other family or friends as support!?
Have you hit the tab above for groups, Join UK GROUPS for better treatment in your area
Get your hands on some lidocaine patches or cream… As soon as you can ask for it
Can make life bearable…can be prescribed by regular doctor, dentist or specialist.
Other topical ointments
http://www.livingwithtn.org/forum/topics/taking-a-poll-here-please-…
It can get better… Ask a specialist, and ask UK group about who to see about an MVD Surgery.
List of our favorite meds
http://www.livingwithtn.org/forum/topics/for-those-on-the-medicaion…
Here is a link to read about how we allllll feel like this !
you and hopefully your wife can read this
http://www.livingwithtn.org/forum/topics/an-important-reminder-for-…
When less sad, remember to advocate for yourself, learn all you can, and insist on the treatments you want to try!
Keep posting!
Borris, hang in there, I know it’s hard…
Pain control is first and foremost, I’ve been struggling for a long time now and although my pain is not controlled there are little things that help …heating pad, lidocaine mixed cream. Numbing cream for my teeth, avoiding sugars, wind and the list goes on…
Sometimes we need to get more aggressive with advocating for ourselves… Our pain is unique and hard for those who have never experienced it to comprehend…I tend to use the saying " Pain Crisis" when my pain is high and has lasted hours and hours… My doctor’s office knows when I say pain crisis it means I need a reply ASAP…usually within hours, longest I’ve waited was 24 hrs.
As hard as it is for us to have TN…it’s really hard for our loved ones too…
Communication, understanding the illness, the help of family & friends can all make a difference.
Giving up is not an option, you’re stronger than that, I’ve had my husband read the link KC provided above, it can help…
I can understand your feelings and it must be hard for your wife too.
Life can change so quickly, and all at once and it can be so difficult to cope with it all, but it’s so important to talk and share and understand how you’re each feeling.
Call your doctor tomorrow to adjust the meds if you’re pain is not covered by your current dose, yes, it may mean a few days of feeling out of it/side effects etc but it could be better in the long term, allowing you to function and experience some relief…
I hope tomorrow is a better day, you’re not alone…
(( hugs )) Mimi
Yes, there is also lidocaine mouthwash available for your teeth!!!!
Keep fighting!
My god as we need those we are love, they just leave us easly !
I am trying to Keep positive as much as I can to avoid deprission
Bless you …
Hi Borris, think of the positives, you say you had not had a bad flare up for a few weeks, that is something to be thankful for :)
Make an appointment with your Dr. tell them how you feel and that you are still waiting for an appointment with neurologist,
See if the Dr can speed things up. Or try phoning the neurology department yourself.
Keep fighting Boris