My pain has been constant for the past 4 months but i cant see a neurologist until 2nd January 2019 and they've tried me on gabapentin, morphine patches, pregablin, paracetamol, nuropfen, amitriptyline and codeine and none of these have worked for me its getting to the point i just cant be bothered with anything anymore. The pain is getting to me so much that i feel the only thing that would relieve it would be to smash my head off a brick wall til i become unconscious. Have any of you that have TN ever taken yourself to a and e, if so what was your experience? Thank you all in advance xx
I can definitely relate to constant pain. I’ve dealt with TN for 19 years. Lately, the pain has been terrible…my husband has pretty much been raising our 2 young boys by himself. I’ve been leaving family get togethers because I feel so bad. I’d like to be able to answer your question, but I don’t know what A and E is. ?
Sorry it is accident and emergency.
It is an emergency our bodies can only take much.
I have come close, but my pain finally went into remission.
I just joined a facebook support group that has thousands of members. Several of the members have gone to ER. Here is the site hope it helps.
FPA/offical Tigeminal Neuralgia NetWork
I had tn for 3 years the meds made it manageable i didnt want to kill myself anymore But then my body got used to the med an the pain started to come back so i opted for the Surgery and it was the best decision I ever made in my life!!! The pain was gone instantly and the Surgery went Fabulous i was literally up and walking around like nothing ever happened in 2 days! But bedrest is required for at least 2 months your brain needs to settle and heal. I wish i would have gotten the surgery from day 1 instead of going through that horrendous pain for 3 years!! DR.LEE AT PENN MED PHILADELPHIA IS THE BEST IN THE BUSINESS! I LOVE HIM FOR WHAT HE HAS DONE FOR ME! As for you you definitely need a medication that will get you through an give you some comfort how many mg of gabapentin were you on? YOU MUST UP THE DOSAGE UNTIL THE PAIN STOPS they slowly up the dosage until your somewhat pain free, i was on 2700mg !!! For 3 years! Anything under that was useless!! And what are your symtoms? Lastly have you ever had Shingles or MS and is it on 1 side of your face. Tell your dr. To prescribe you carbamazepine and increase the dosage as needed i think its 300mg a week he would know how to prescribe it. These are the questions the neurologist will ask you then prescribe you carbamazepine. It works the best but i was allergic.
rashine, which surgery did you have? Was it the microvascular decompression?
So heres what you must do : identify your symtoms such as is it on 1 side, shocks, stabbing etc.2. Rule out Multiple sclerosis (MRI) 3. Have you ever had shingles?4. Have your dr. Prescribe Carbamazepine, Keep going until you get relief!!! you can go up to 3600mg you can up it every few days. 5. That is what the neurologist will ask of you after that they’re useless!! It will be all about getting your meds or getting Surgery if your a candidate. Your a candidate if it feels electrical and stabbing a little burning. 2. You didnt have shingles or Ms,3. its on 1 side of your face and the medication is working for you. BUT YOU MUST UP THE DOSAGE TO AT LEAST 2700 MG BEFORE YOU GIVE UP ON THE MEDICATION!
Yes youve done your homework very important because most dr. Dont know shhhhh
One of my best friends just had the MVD operation after her meds stopped working. It was just done today. The doctors told her son they could see what was causing the pain and it should be corrected now. Might want to look into it.
You listed the meds you’ve tried but it sounds like you never tried any other treatments.
I notice when I keep my sugar intake down and cut out alcohol that my discomfort decreases and
sometimes leaves me with nothing more than a numb upper lip.
I also do strenuous workouts like jogging and long-distance swimming. This helps regulate blood sugar, which from what I’ve heard, is part of the secret to coping.
I also carry a small, lightweight ice pack every time I go out and keep it next to me when I sleep. I fold wet wash clothes in a zip lock bag with my ice pack so they stay cold for hours.
My practitioners never suggested any non-medication approaches, so it’s good to do your own research.
The diet, ice packs, and exercise are helping me just as much as the amitriptyline I take and the Benadryl I use sometimes to make me sleep.I have found that heat brings on a neuralgia attack sometimes.
You listed the meds you’ve tried but it sounds like you never tried any other treatments.
I notice when I keep my sugar intake down and cut out alcohol that my discomfort decreases and
sometimes leaves me with nothing more than a numb upper lip.
I also do strenuous workouts like jogging and long-distance swimming. This helps regulate blood sugar, which from what I’ve heard, is part of the secret to coping.
I also carry a small, lightweight ice pack every time I go out and keep it next to me when I sleep. I fold wet wash clothes in a zip lock bag with my ice pack so they stay cold for hours.
My practitioners never suggested any non-medication approaches, so it’s good to do your own research.
The diet, ice packs, and exercise are helping me just as much as the amitriptyline I take and the Benadryl I use sometimes to make me sleep.I have found that heat brings on a neuralgia attack sometimes.
You listed the meds you’ve tried but it sounds like you never tried any other treatments.
I notice when I keep my sugar intake down and cut out alcohol that my discomfort decreases and
sometimes leaves me with nothing more than a numb upper lip.
I also do strenuous workouts like jogging and long-distance swimming. This helps regulate blood sugar, which from what I’ve heard, is part of the secret to coping.
I also carry a small, lightweight ice pack every time I go out and keep it next to me when I sleep. I fold wet wash clothes in a zip lock bag with my ice pack so they stay cold for hours.
My practitioners never suggested any non-medication approaches, so it’s good to do your own research.
The diet, ice packs, and exercise are helping me just as much as the amitriptyline I take and the Benadryl I use sometimes to make me sleep.I have found that heat brings on a neuralgia attack sometimes.
I would go to emergency room if I were you.
I have not been on chat for a while, so I am coming in late to this discussion but what exactly are your symptoms. Mine was shocking on the left side of my face and shocking under my gums alone with shocking all on left . I take (1) tablet Oxcarbazepine 300 mg twice daily (1) in morning and 1 tablet 300 mg tablet Oxcarbazepine with Gabapentin at night before bedtime.
I had MVD surgery it is good but I get some times a small sticking in that side of my face and today I was getting a sort of throbbing on my face so I took 2 Oxcar and 3 gabapentine , when ever I get anything I take my pills. I am going to have my Neurologist increase my meds because I don’t want to feel anything and I am going to see If he have put me in a study program I am sure their such a thing out there. I wish I have know about this balloon surgery before I had MVD it is not invasive I had a stroke, double vision and a large dent in the back of my neck, and those headaches were the worse. Before anyone gets MVD a check out other options.
God is healing me I know this and I believe this is so. We are all in this together.
God Bless Us And Give Us And Give Us Peace
I am going to try that ice pack, at this moment while waiting for my meds to kick in and about that sugar intake I just ate a large Red
Robin hamburger and all of a sudden I get a flash of pain in my left jaw, that diet stuff could be a large part of this dreadful disease. Maybe I will try that Ice suggestion next time that pain is gone now. I know this is crazy but when I get on the chat and start talking about my TN that is when I get a lot of little sticks and don’t know how to describe the others things I feel. I seems to be connected to eating or over eating, I tried so much to eat all of that large hamburger but couldn’t get it all down. Off topic: I met a lady at my pharmacy and she was refilling her Gaby and I asked her what did she take that for and she said MS. I told her my symptoms and she said she would get shocking on the tip of her tongue and that was when her MS was just starting, I had noticed before all of this TN started that I was shaking a lot while doing my job. I don’t know what the connection is to MS, just wanted to tell you guys about that woman and her using the same pills that I take. Back to those small facial pin sticks and weird small throbbing pains, I am going to try going to try that ice on face.
Oh! That lady said that she also take some sort of shots for MS, I did read somewhere that there was a cure for that disease.
I am out out of here and going for that Ice pack, will have doctor increase my dosage of meds, he had already suggested I take higher dosages.
God Is Healing Us All In Numbers. For where two or three are gathered together in my name, there am I in the midst of them.
God Bless Us And Keep Us And Give Us Peace
Miss Laura, I’v suffered since Feb 8, 2011, finally pain and shock free. My neurologist gave me oxcarbazepine, it helped for 6 yrs and was taken off due to liver enzymes off charts, last Dec. I was desperate, shocks were constant, I went to health food store and got charlotts webb cbd oil, didn’t tell anyone., it started helping and by Xmas I was much better, I put 3/4 dropper of cbd under tongue, do not swallow for 10 minutes . I take am and pm, I very seldom have a shock or pain, it has been a miracle for me. Good luck and God Bless, I have my life back.
hello laura. i presented to a and e when i had my first bad attack 3 years ago. sadly tn isnt that well understood in a casualty situation. you must hold out for the neuro appointment. i luckily found the carbamazapine effective but it took 2 weeksand some increase in the dosage until i found the right level. i phoned the neuro surgeons secretary regulaly to ask for any any cancelled appointments and said i would attend at short notice.
but what helped me the most was a mindfulness practise. a lot of the pain in tn is caused by reacting to the pain. this causes more stimulus to the nerve and on and on it goes in a vicious circle. the more still you can be when that zap hits, the less stimulus from you moves the nerve. but its not easy . it almost feels like giving in. its as if your opening yourself to what is ( this nightmare pain) ive written about it on other posts . i had an mvd in july and was pain free the following day. when you get to see the neurologist take someone with you so you get your story over accurately and can have a back up to what was said. google john kabat zinn. mindfulness and pain on utube. itll give you a flavour of sincere mindfulness. take care. peter hobson.
I have been on carbamazapine (after several others) and it helped keep the pain under control. However, I recently visited an osteopath for a problem with my shoulder and when taking my history, he said he felt he could help with the TN. So, anything to take less meds, I gave it a go. He uses a method called ‘intra-oral inhibition of the lateral pterigoid muscle’. All I can say is that I reduced my medication over a few weeks and have not been taking any for a month or so - and all I experience is occasional twinges a couple of times a day. I can live with that. Worth a try.
Hi! I can relate to your pain i have been dealing with Trigeminal Neuralgia for 4years now off and on and right now im on my sixth month dealing with the pain with this episode im on Carbamazepine and baclofen together not helping much tho and i use liquid lidocane when needed i went once to ER pain was horrible felt like dragging myself on the floor my husband took me and they sent me home with Vicodin so it could just put me to sleep i was told i should of never been at ER since pain medication doesn’t help so i have tried CBD oil and it just makes me sleepy but many people get different results from it hopefully they can get u in to see Neurologist sooner .Hope you feel better soon
I hope you are feeling better . I have had TN for 5 years now i am not a candidate for surgery as my neurologist told me so i have used CBD oil in tea to help me sleep at night i have 3 kids and a loving husband.But my episodes lasts up to 8 months and come back stronger i also use liquid lidocaine to numb my mouth for a bit the pain under my tongue makes it worse i feel relief at least a few minutes . I use tregatol and after a while my body doesn’t respond to it the same so my neurologist added baclofen to use along with the tregatol and it helped abit more to get the relief. Hopefully by now you have found something to help you out .