Permalink Reply by Marcie 40 minutes ago
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Hi everyone, I’m very new to this site (having only joined last week), however, I just wanted to thank you for all this information. It’s very scary being diagnosed with TN and not having a clue about it (as like some people on here i had never heard of it before the diagnosis).
I was diagnosed with TN by my GP last year after believing that i had dry eyes which then turned into feeling like someone was stabbing me in my left eye and cheek with a needle. At the moment I’m on 450mg of pregabalin (lyrica) a day and need to actually increase this back to 600mg. I had quite a horrible reaction to tegretol at 600mg a day and I’m not allowed to be on it anymore. When the pain gets really really bad I take tramadol (150-200mg) at night as I can’t function during the day and work at the same time. I also use the cream Capsaican 3-4 times a day just to calm down the burning that I get in my face.
I found that during the winter, I had a continuous burn in my face with pain as well along with sinusitis, however now that the weather is warming up, I’m finding that the sun is burning my face and the heat (I live in England-it’s really not that hot-lol) really bothers my face. Has anyone else experienced this with the warmer weather?
I’m also scheduled to have the glycerol injection at the end of this month and I’m very very nervous about this especially as the neurosurgeon does not believe that it will work. I’m really at a loss as to what will help or what other meds I can ‘try’ as nothing so far has made an impact except for tegretol (except i cant be on that anymore as i had an allergic reaction to it). The pregabalin works but not anywhere as good as the tegretol did. My face just feels very sore a lot of the time.
I was wondering if anyone has used any other medication that I could possibly take to my dr and ask about .
Thanks in advance for any replies that I get.
many here on amnitryptoline (spelling?) for your kind of pain -- and or mixed with baclofen
Do you want to go thru a procedure that doc says won't work
Can you get a second opinion?
In the search box here - put glycerol injection --- there should be plenty there
Keep Posting!
Hi Marcie, I agree with Kc about having a procedure that a doctor does not think will work, is very questionable. Why is he offering it to you if he is pessimistic. Talk about taking your hope away. This is a tough enough to live with everyday. I would get a secomd opinion if you can. This would not leave me warm and fuzzy. Good Luck Marcie keep us posted.
My Best
Joanne
Marcie,
Another medicine that Dr's prescribe is Gabapentin (Neurontin). Some have also found that Lidocain patches or creams have helped ease the pain a little.
Hi everyone. Thanks for replying. I went to see my GP yesterday and came away slightly frustrated. I get the impression that he doesn’t know what to do with me. I was on amitriptyline at the beginning of this and it didn’t help even though we kept increasing the dose.
My dr wants me to stay on the pregabalin as he believes that this is the best of the drugs that I can take. Went in with a list of things/medications to ask him about and he vetoed all of them. He also said that the Lidocaine wouldn’t work as well as the Capsaican that I’m using at the moment.
Neurosurgeon doesn’t believe that it will work as he believes that I have AFP as opposed to TN. I believe that I have TN II with a mixture of TN but so far I’ve found that the neurosurgeon believes that he thinks that he knows everything even though I’m the one with the bloody pain and not him.
So I’ve increased the pregabalin back to 600mg yesterday and I’m waiting for it to kick in properly now and get rid of the pain. Instead I’m getting the cold like symptoms again that I had before. I sincerely wish that the tegretol would have worked as that completely cured the pain.
I’m fed up and irritated and broke down in tears yesterday leaving work as I was in that much pain. This situation is get tinge down but I’m trying to be around my friends as much as possible as that makes me keep levelheaded most of the time, and I can focus on something/somebody else rather than focusing on the pain.
In terms of the goycerol injection, I’m not sure it’s going to work myself, however I feel that I need to try something as these drugs are getting me down (literally) and the whole situation can be and is extremely distressing and depressing.
I don’t know what els to do. The thing is that my GP, as brilliant as he is (in my opinion) is just that-a GP and is not a specialist in this. The neurosurgeon is a specialist in TN but is an arse and didn’t have any bedside manner at all and didn’t answer questions to me satisfaction and I didn’t feel that I could challenge him as I was in shock at his diagnosis and also his manner and was in pain as well. So I am feeling a little bit stronger today and hopefully it will last and he won’t be getting away with of this when I see him this coming week. I’ve written down loads of questions for him which I want answered before I become his damn Guinean pig.
Will let you all know what happens then and hopefully I’ll still be feeling