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Posted 3/10/2013 6:53 PM (GMT 0)
Did you mention/did she offer to try a muscle relaxer at least?

It's really weird that she doesn't seem concerned. Spasms are painful!!!

I would be looking for another doc for a second opinion at least.
Posted 3/10/2013 7:38 PM (GMT 0)
No she didn't offer and I should have mentioned. Maybe I didn't get across how bad it was strongly enough, can be difficult sometimes in the foggy haze of the medications. I will try and go back soon I think or ring in.

Well I'm on the max dose of everything and its not made any difference. Nothing else left to try...
Posted 3/10/2013 7:42 PM (GMT 0)
I'm sorry to hear that the appt. did not goe well...Did you actually ask him if you could try a muscle relaxer on top of your other meds to have once in awhile for the bad spasms?

Sometimes just saying that you have tight muscles or describing it may not impress upon the Dr. how bad it is. So for this type of med I would come right out and ask if there is anything that you can take for the spasms..

I couldn't tell which Dr. this was? The Neurologist or your Pain Mgmt. Dr.? Not sure how things work with your insurance but you can try to call them and see if you are allowed to self refer to certain types of Drs...

I would think though that even seeing your Primary Dr. would be someone who could at least prescribe a muscle relaxer until you get this sorted out with another Dr.

Another suggestion is to get the latest edition of Reader's Digest. It is the one with the Dr. Travis Stork on the cover and the article about mysterious illnesses has one about a woman with TN and this Dr. who did surgery for her and she is pain free! They cut behind her ear and removed the pressure off of the nerve. She was in horrible shape beforehand like you are and this was an absolute miracle for her.

So, you could even contact this particular Dr. by phone and see if they have any suggestions for hospitals in your area that have other Drs. who specialize in this.

I hope you can find answers!
Posted 3/10/2013 7:49 PM (GMT 0)
This was just a general GP (standard doctor) - I wanted to get referred back to the neurologist from there. Am going to ring and get them to refer me if I can

What you mention about that article, this is exactly what I want. An MRI done to see if there is any physical cause for the nerve pain, then some other treatment options. Would agree to full brain surgery in a heartbeat regardless of any risks. It really is that bad.

That's a good idea, I think I will try to find a place that specializes in treatments for this myself. Problem is I believe here in the UK one has to be referred by the general doctor before being able to access any specialists.

Am 99% sure its TN that I'm dealing with, however I would like a firm diagnosis since it now fits far better to this specifically than it did last time I saw the neurologist originally.
Posted 3/10/2013 7:53 PM (GMT 0)
Oh..I forgot you were in the UK..sorry about that..

And thankfully this isn't really "brain" surgery in that sense but I understand what you are saying that at this point anything to help with the pain.

I know things work a bit differently with regards to how you get to different types of Drs....

Is there another GP that you can go to in the meantime until finding a Neurologist?
Posted 3/10/2013 11:37 PM (GMT 0)
That's ok, I know most on this forum on are in USA and I get the impression it is a little easier to pick and choose doctors and specialists there.

I can go to another GP, but now that I've calmed down a bit (was in a hell of a frantic state during the previous couple of posts a few hours ago since it was a really severe pain attack for a while) I think I will call in and leave a message for the same doctor saying that I didn't get across clearly enough the nature of the issue in the appointment, then I can persuade them to refer back to the neuro.

Also will ask for private referral letter too and investigate how much that costs.

Thanks for replies!
Posted 3/11/2013 12:35 AM (GMT 0)
And don't forget to ask about a muscle relaxer in the meantime! I think it will help you a lot! :p
Posted 3/14/2013 9:54 PM (GMT 0)
Rather good news here, managed to get a free government healthcare neurologist appointment for five weeks from now. Didn't expect it to come that quickly.

Still insane amounts of pain but have upped the gabapentin to heroic levels and its kind of keeping it it bay some of the time, enough to function at least.

Am seeing doctor to discuss before neuro appointment, so will get a muscle relaxer if I can. Its not another thing that will make me drowsy is it though, got enough of them already
Posted 3/14/2013 9:59 PM (GMT 0)
For me, the higher the dose, the more chance it has to make me drowsy. I've been taking muscle relaxers for a long time though and I need some pretty high doses for it to work usually.

You're probably gonna start at a low dose and should be okay. Usually, if I get any of the side effects, I just get a little dizzy at first.

That's great news about the neuro appt! When do you see the regular doc?

Posted 3/14/2013 10:03 PM (GMT 0)
That is great news about the appt.!

It's really trial and error with the muscle relaxers and possible fatigue. And as we mentioned, a lot of times it will subside after a few weeks to a month.

I was on Flexeril way back in the mid 90's and couldn't keep my eyes open! Now that I am on it again I don't have any fatigue associated with it.

I've also taken Robaxin and Skelaxin and neither of those caused fatigue either even from the start.

Good luck and keep us posted!
Posted 3/14/2013 10:17 PM (GMT 0)
It's amazing how different we all are, I was on Flexeril for a long time and only had some drowsiness the first week and then I was fine.

But when I was on Baclofen, Skelaxin and Methocarbamol, I couldnt keep my eyes open.

I'm hoping I react to the Dantrolene more like I did to the Flexeril! Tonight will be my 4th night taking it, but it has yet to reach theraputic levels, so I can't really say how it will affect me at this point.
Posted 3/15/2013 8:33 PM (GMT 0)
It is interesting how differently people react to medications, I am lucky with gabapentin in that I can tolerate a very high dose reasonably well.

I should be ok with any drowsiness, I'm used to it now with all these meds and if it stops the violent muscle spasms it is very worth it.

Five more weeks to get through then hopefully some answers *fingers crossed*
Posted 3/15/2013 9:33 PM (GMT 0)
It is interesting how differently people react to medications, I am lucky with gabapentin in that I can tolerate a very high dose reasonably well.

I should be ok with any drowsiness, I'm used to it now with all these meds and if it stops the violent muscle spasms it is very worth it.

Five more weeks to get through then hopefully some answers *fingers crossed*
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