Tn and me for 3 years

General General TN & GPN (Old Site)
1

Hi.

I've had tn for 3 years but it has come and gone through that time.

I lost my full time job and now work part due to it.

I have issues with meds as tegretol screws with my liver so i cannot have a dosage that is effective enough and I've tried it mixed with other meds where it either doesn't work or the side effects outweigh the benefits.

12 months ago i was advised on getting mvd as i was at a good age for it (30) but we never followed through as it went away again.

So now we're back to mixing meds and its very frustrating, im house bound when my wife is at work as i don't like going to places I'm not comfortable with in case of attack. I once walked my dog, had an attack and let go of the lead. Lost my dog for 6 hours.

I go to work and i drive for a job which Is easy as i am alone and feel confortble if i have an attack I'm in a comfortable space in my car. (Does this sound strange)

I used to do both manual labour and sit in front of a computer for work but now, if i even mow the lawns i get extremely tired and will have constant droning headaches, burning for days with the shocks where i cant sleep for days and the computers do the same thing, i get tired, even as i am doing this.

Do others have these issues?

So any way... i never notice people have similar attacks to me. .. well the super intense ones (8 or higher)... if I'm standing i literally fall to the ground, i uncontrollably collapse. I have no control over my body as the pain is initially so intense, i do worry they someday ill hit my head, is this common as my neuro doesn't really respond either way. I even recently had an attack as i was drinking some water, i actually bit the glass as a reflex of sorts... i cracked it but didn't break it. Luckily. It was strange as my normal reflex is to open my mouth .... and proceed to drool like an idiot!

If anyone has similar experiences it would be great to hear from you!

Thanks!

2

Hi Steve.
I’m sorry that you are going through such a hard time with Tn. It is common for sufferers to have difficulty finding relief with medications. All of the medication s used come with side defects and often it is finding a balance between pain relief and function . It is also common for TN to come and go with weeks, months and even years between flare ups.
I have atypical TN so it is a constant type of pain. It does not bring me to my knees during an attack but is more like the type of pain that drives you mental over time. I do know that people with type 1 or classic Tn that get quick, sharp bolts of pain will collapse during an attack. That the pain is so sudden and strong that it is too much to handle.
If this is the type that you have then the success rates for mvd surgery can be very good. You really need to search out the best of the best neurosurgeon though.Learn as much as you can and ask lots of questions. This site is an amazing source of support and knowledge.
Jane