Hi, there was a thread about this a while ago but no posts recently so I've started another. I had an attack of TN about a year ago which happily only lasted a few weeks.I'd never felt pain like it so my sympathies to those of you who have it more severely/permanently. I had toothache all weekend which I thought was another TN attack, til my brother said the exact symptoms sounded like what he experiences when he has a tooth abscess. I dismissed it at first but by Monday I was coming round to the idea as the main source of pain seems to be a single tooth. So I went to the dentist who prodded my tooth with that metal hook thing they use and took 2 x-rays. She said though that there was no abscess showing on the x-ray, no decay and no gum disease. What I'd be grateful to know though from other TN sufferers is whether anyone else has had similar symptoms. The attack I had last year was much more generalised and more painful but as that's been my only attack (I know how lucky I am) I thought I'd ask. Thanks.
I had been taking amitriptyline for neuralgia on my face and head for over 10 years, but I stopped taking it a couple of months ago as it was causing heart palpitation I thought I would be ok, but the excruciating face pain started up again so I have started Pregabalin . I can normally only cope with the lowest possible dose of any medication, so I'm wondering if anyone has experience of Pregabalin, and what dose has given relief. I started on just 25mg, and the pain is subsiding already. I was able to control the pain before with just 10mg of amitriptyline. The pain goes up through my jaw, into my ear and up to the top of my head. If anyone has experienced this, you will know how unbearable the pain is. This was the first MS symptom I had many years ago, long before diagnoses, and it still plagues me to this day. I have SPMS now. Many thanks to anyone who shares their experience of this with me.
Just wondering if anyone has any experience of this, and if they do, anything that helped it? (Particularly things a pregnant person can use!)
I've had this pain for about 6weeks and hadn't thought it was MS related, was getting to end of my tether and decided to go to GP , but had a quick google first, only to quickly discover my symptoms fit occipital neuralgia to a tee.
It's incredibly painful, and is becoming increasingly debilitating as when it comes on (as it does daily) I can't concentrate or read, or do anything of any value, and as it keeps happening badly when I'm in classes, it is becoming a real issue.
Just bending to get something out the fridge causes intense pain and black spots in my eyes, it's really starting to get to me.
I also had two days this week where my tongue and lips where numb/pins and needles, plus my walking and bladder have been playing up, so am now suspecting a small relapse.
I don't want to ring the MS nurse though because if they get a whiff of MS activity they will whack my pregnancy up to high risk, meaning I won't be allowed to use the birth centre. Obviously if I feel my ability to give birth will be affected I'd say something, but at the moment I don't feel that way, so don't want to involve medical people.
Any ideas, at all, would be greatly appreciated!
As some of you know, I used to be under the care of Queens Square in London, where I was first diagnosed. Unfortunately, of late, I found the train, tube, cab trip to London all too much so, it was decided, that as there was nothing they could do for me anyway. I would be referred to a local unit if a new symptom or major deterioration develop.
Well, Trigeminal Neuralhia developed just after Christmas ( all info on another post). So I was referred to a local unit.
Saw a very nice chap, who apologised and announced that he would have to start all over again, which I'd sort of expected anyways. So, much to his glee, I took along copy MRI scans, and all the copy letters from London, he was ever so pleased. Nevertheless, he wanted, understandably, to do all his own assessments, which I'd expected anyway.
Anyways, the usual poking, prodding, pin sticking, stand up, sit down, push, pull.....you all know the drill by now.
He said very little about the TN really, only to start dropping the Gabapentin and see if the TN comes back again, if it does, then increase the dosages once again.
He couldn't read the scan on his PC so he asked if he could hang on to it for a week, and he would be able to review it with other neurologists and radiologists very soon. He ordered the usual battery of blood tests, I was slightly worried that one of the tests said ' ALS' but I'm sure London ruled that beast out before.
On my way out I asked the nurse if I should have a follow up appointment? She said ' oh the Dr. will send for you when he has all the results' So that was that really.
My MS Nurse and Neuro-physio have always said that I should be under the care of a neurologist, despite myself and my GP feeling that it wasn't ever going to be very beneficial, but the TN sort of forced the issue .
So that's me, back on the Neurologist lists !
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