I have just been diagnosed with this most terrible painful condition. The treatment is Carbamazepine but this is not recommended with Apixaban. My option is to switch to Warfarin to keep checks on my blood. As this is a very rare condition.. a shot in the dark.. does any other AF sufferer have it please?
I am willing to go back on warfarin if it helps but the 9 mile round trip for the blood tests does not appeal.
Sorry to hear this,never been on warfarin but some people on here self test,I hope they see your post and can advise.
Wonder wht the problem is with Apixaban?
Can one of the other DOACs not be used.?
I understand it is all DOACs Bob. Apparently with warfarin they can keep a check on the effect it is having on the blood but not so with the DOACs. It is extremely painful so I can't sit back and hope it goes away.
So sorry you have to cope with this. As lots of people are transferring to NOACS there should be plenty of self testing machines second hand, maybe someone on this forum has one to sell. I hope they manage to get your pain under control, I must say I have never heard of this condition. Best wishes 🤗
Bless your heart, I'm so sorry to hear that you are suffering with this painful neuralgia. Honestly, we never know what life is going to throw at us do we!
Like others have suggested, having your own machine to check your INR yourself when on warfarin sounds a good idea. I believe they are about £200 new, but who knows someone here may have one they no longer use.
Wishing you well and sending you a healing hug..
Jean
Nothing to add except sympathy, nerve pain is the worst 😭 💜
My sympathies . I suffered ftom this quite horrendously painful condition over 26 years ago before my AF started. It is often referred to as the worst pain known to man and me and my family recall it vividly.
Have you thought of self testing with warfarin ? I have my own kit from Roche pharmaceuticals which I've been using for a number of years...saves all the tedious visits to GP s surgery . I think they are about £300 to buy .
I would be more than happy to buy a machine. I will suggest that next time I see the GP as I really need some relief from the oain. What treatment did you receive for the nerve pain Jalia. Paracetamol does nothing to relieve it.
Paracetamol would have been completely useless for me as well.
From memory I think I took CoCodamol / carbamazapine. There was nothing to greatly relieve pain...this only took a slight edge off for short period. My next step was severance of nerve but fortunately it disappeared after several months.
I found that drinking from a straw helped getting fluids down. I lost a lot of weight ( 2/3 stones) as it was too painful to eat and no appetite anyhow. Just had to manage to eat between episodes.
I do hope you are able to get the machine . It's called Coaguchek testing device.
Good luck!
Jalia
I do empathise with you. A very good friend of mine suffered with this awful condition and watching her go through the pain was heart breaking. She eventually had an op to sever the nerve. Fortunately for her he didn't have AF too. I hope you are able to find some way of getting the right medication to deal with the pain.
I have suffered neuralgia for many years but have controlled most of the attacks with strong ibruprofen. Cannot not take ibruprofen now as diagnosed with AF March last year and take Apixaban and beta-blocker (Bisoprolol). Never had the neuralgia since taking these meds. Understand betablockers are sometimes prescribed for migraines but perhaps these are also effective for neuralgia. Do you have AF? If so, I would have thought you would need betablockers which may also help the neuralgia. I would check with a doc. I am no expert!!
Unfortunately I can't take beta blockers. I am asthmatic. I did pop into the Medical Centre again this morning and now have Co-codamol to try. Fingers crossed.
Thank you everyone for your responses. It is lovely not to feel alone in pain. At least the British football teams are giving us a lift.
I sympathise with you, I suffer from this condition but it is only triggered when I start to eat or drink anything tarte and only lasts for seconds, as I continue to eat or drink it lessons and then subsides I don’t take any medication for it so am sorry I can’t be of any help but I feel for you. Mine was caused by surgery to remove a benign tumour in the jaw area and I suffered nerve damage but the pain is excruciating, fortunately I only suffer with it like I said for seconds but I do avoid fruit etc. I have PAF and take sotolol and apixaban.
I send you my best wishes x
Thank you for your comments. The co-codamol has taken the sharp electric shocks down to a bearable level. Food and cleaning my teeth are the worst .
Hi Enjoy , i was diagnosed with TN at the end of last year i also have AF so am on apixiban and also carbamazepine. I have had no problems at all with both meds. I feel for you as the pain from TM is the most horrific pain i have ever had. Hope you are feeling better and pain free soon.
I am having terrible side effects with the carbamazepine. Can you tell me what dosage you are on please. I think maybe I should not be taking so much. GP went straight in at 100 x 3 times a day. Saw him again Friday and now 2 x 100 daily. I am 85 but this is making me feel 105.
I am on 100mg 2x daily before this i was on gabapentine 3 x daily it made me feel like a zombie i couldn't drive i was loosing my balance and sleeping all the time it did help with the pain though when it was really bad. I am much better now with the carbamazepine. I am 58 . Hope this helps
Have you heard of this device? It's called Cefaly, and uses nerve stimulation to help this condition. THere is something called e-TNS (External Trigeminal Nerve Stimulation) . Here is a link to their site: cefalytechnology.com/en/pro... They are in the UK and USA and Canada. It apparently is FDA approved, and works better than most drugs for headache pain. I have occipital neuralgia, (nerve head pain coming from the back of the neck from an injury) and they have a version of it called Cefaly Arnold. They claim it is highly effective, and if you can get results without medication, wouldn't that be wonderful!? I am going to see if I can get it prescribed and will give it a try. There are basically no side effects, so nothing to lose!
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