I was taken off pregablin 5wks ago. Neuro said was cause I was still getting shooting pains in legs they weren’t working. They must have been as they kept neuralgia away. I was also on tecfidera for 10 months was taken off that as blood count was very low. I then had to wait 5wks before starting new medication carbamazepine. Just started that last Friday. I am now in agony with neuralgia. Every part of face is sore. Like lightning bolt going thru head. Up side face and in ear. I am taking cococodomol and nurofen. There not working. Also rotating between ice and heat on it nothing is easing pain. I have also went to dentist to rule out dental pain. I am almost suicidle with it. Phoned NHS 24 on Saturday they said nothing can do just give medication time to work. How long am I supposed to give it. I am only on 1 x 100mg carbamazapine a day for first week then goes up to 2. Im not looking forward to taking 2 as making me v dizzy. And taking palpitations. I emailed MS nurse yesterday, but she not got back to me. I am not eating or sleeping. I need something quick fix to take pain away. I have been googling acupuncture. Not caring much it costs as long as it works. Has anyone tried this or know of anyone who has. Or can anyone recommend anything for pain.
acupuncture did nothing for me, although i can see how needles tweaking your nerve endings might cause you to relax muscles you were previously unaware of. i do not know if this might be applicable to autonomic / ms affected muscle activities though.
with regard to pain management, i understand that tremendous relief can be found by using cannabis.
please consider becoming a pot head long before entertaining any further thoughts of suicide.
I’m sorry, acupuncture did nothing for me either, and I persevered for some time. Then again, I did not have the particular pain you’re talking about, which sounds like trigeminal neuralgia (had it just once, for a few hours in the night - was undiagnosed, and no trace of it in the morning, so convinced myself it had all been a horrible nightmare).
Carbamazepine is the usual drug for it, so I think you are on the right thing. Try ringing the GP’s surgery rather than emailing the MS nurse, and tell them it’s urgent - see if you can get a telephone appointment. My doctor typically doesn’t have anything for weeks, but if I say phone is OK, she mysteriously becomes available the same morning! I suppose they just use the first slot that somebody doesn’t show up for.
She may be able to give you the green light to increase the dose sooner. Whilst increased dizziness doesn’t sound very appealing, it surely beats what you’re living with at the moment?
Tina
x
Tried acupuncture a few years ago. Unfortunately it did nothing for me either but my ailments were drastically different to those you describe above. I would still recommend trying it though because it might work for you.
Derek
You have my total sympathy. I too have experienced that kind of extreme trigeminal neuralgia pain, which goes up through your jaw into your teeth and ear. Absolute agony. I’m sorry I have no magic solution, although I was told that those extreme bouts usually don’t last too long. My neurologist told me that she has hospitalised patients in the past with it, to administer pain control as it can be so severe. I would contact your GP again, but I know how hard it is to get anyone to take the pain seriously. I too went round in circles from GP, to Dentist to Neurologist, by which time the pain had subsided. The pain lasted about 3 weeks, and was not just the normal trigeminal neuralgia that I get regularly. It was really unbearable. I didn’t try acupuncture then, but I would try it if it ever happened again. I have been getting acupuncture recently to help with other problems and it definitely works for me. Make sure you get a properly qualified person. Good luck. I really feel for you with that pain. I know how bad it can be. X
Forum users are reminded that cannabis is illegal to possess, grow, distribute or sell in the UK without the appropriate licences.
It is a Class B drug, with penalties for unlicensed dealing, unlicensed production and unlicensed trafficking of up to 14 years in prison, an unlimited fine, or both. The maximum penalty for unauthorised or sanctioned possession is five years in prison.
As with recommending any treatment (legal, prescribed or otherwise) - some people may experience different side effects that may prove harmful.
This is particularly relevant with a condition like MS, as everyone’s symptoms are different.
Forum users should note that cannabis can make some people feel confused, anxious or paranoid, and some experience panic attacks and hallucinations.
For more info on the facts about cannabis, we recommend the NHS Choices website:
Sativex is a cannabis-based oral spray which works on the cannabinoid receptors in the brain and spinal cord. It is licensed for treating spasticity in people with MS, but it is still not available on the NHS in England, Northern Ireland or Scotland.
You can read more about Sativex and other treatments for spasms and/or stiffness on this page:
Stewart (admin)
Well, l get my Sativex on prescription from my GP - have done for about 4yrs.
But what stopped my trigeminal neuralgia was LDN. And TN did make me feel suicidal - the pain in my face/jaw/ear was horrendous. And l am quite a toughy.
Thank you for this post; it is highly relevant. However, your inclusion of the following statement is little close to worst case scenario, fear mongering:
“It is a Class B drug, with penalties for unlicensed dealing, unlicensed production and unlicensed trafficking of up to 14 years in prison, an unlimited fine, or both.”
I think it is safe to say that if someone is so miserable and desperate that ending their own life is a valid consideration, then the threat of prosecution is in reality, no threat at all.
A simple observation: the law is bogus and seldom enforced at any level, in any jurisdiction. I wonder how many MS sufferers who are also users of cannabis have been prosecuted and sentenced to 14 years in prison with or without an unlimited fine?
But with that said, i know you have to safeguard the reputation of this site and your organisation whilst also allowing for informative contributions. No easy task. I remain grateful for all of your efforts.
I sadly too suffer from the mindblowing jaw ache. About a year ago my dentist made me a gum shield, as I was chewing the inside of my cheeks and biting my tongue in my sleep. Slowly with the help of Corsadyl gel & mouth wash my tongue & mouth ulcers are cured, but still grind my teeth when I am awake resulting in constant jaw ache & neck tension. My Neuro thinks it is caused by stress and suggested that I try to avoid it, sadly not possible.
With regards to Acupunture I had a series of six sessions in the Spring, this was intended to help my circulation as my hands & feet were like blocks of ice, during the day (completely the opposite to the night hots which happen when I am in bed)
The Acupuncture worked for that and I no longer need huge socks & gloves on all day at home or out. I hadn’t thought about it for my face, as don’t think this will improve until I reduce the major stresses. Perhaps as soon as I can save up £200 will try another six sessions for my jaw. If I manage it, will let you know how it goes.
Mary x