Hi all hope everyone is doing okay.
I just wanted to post on here and see if anyone else was in the same position as me. I am really strugglung with the cold weather as it is my biggest trigger. I can't leave the house, I can't do anything. I am in so much pain i am just sleeping all the time as i am getting so exhausted with it! I have the heating on full i am wearing a thermal balaclava and hoody and i have a huge blanket wrapped round me and have heat pads on. Still my nerves seem to be imagining a breeze and it is just excruciating! Arghhh! The dull pain i have 24/7 is wearing me down with this weather as the intense pains are just so frequent. Tegretol seens to be doing nothing. I am so sorry for any of you sufferers who have extremelt cold winters this must be hellish. I'm in the uk and its currently 0 degrees C. I know it could be so much worse.
Anyone have any tips or anything it would be much appreciated I'm kinda losing the will here.
Love to all Xx
I’m so sorry you’re in so much pain. I feel for you as my pain suddenly flared up this winter too. I was supposed to be getting the Glycerol injection on the 22nd but one of my kitten scratches got infected so no go until next year now but tbh there’s no guarantee anyways I just have to try something. I can tell you for sure to avoid potassium, no bananas or raisins or other foods high in potassium as this flares up the pain. My new remedy from my homeopathic doctor (I’m lucky to be on the register at the Glasgow homeopathic hospital) has just arrived today so my fingers are crossed. My last one was working very well but suddenly stopped but this happens unfortunately and then I have to change. I’ve also had some good calming effect from cbd oil, it’s good for calming nerves and also the anxiety you will no doubt be feeling being in so much pain. You can get it online or in Holland and Barrett. Accupuncture can also help but go to someone experienced, my lady is great thankfully. But I feel you, I’ve been struggling for the last 6 weeks and if it weren’t for all these things to try I’d have been beside myself. I’d look into if cbd oil is ok to use on tegredol, I’m on gabbapentin and it’s fine, and try it. Best of luck. My heart goes out to you. This condition is so awful to live with. Love Kirsty xx
I use Turmeric, El Carnatine (Buy both at Puritans pride on the web, buy 1 get 2 free) & Glucosamine (Buy at the dollar tree) I hate the side effects of meds. No side effects from these. Before I go to bed I take the med Carbamasapine. It takes the pain away plus helps me sleep. Hope this helps!
Oh thanks so much Vicki i will look at getting some supplements =) Much prefer supplements to more meds so thanks.
I'm on Carbamazepine too but it's not doing anything yet glad it's helping you though 😊
Take care Xx
I tried Carbamazapine before but it didn't work. I told my Dr. the over the counter things I was taking that I did get relief with during the day. Told her they didn't help at night. She then told me to try the Cabamasapine half the dose at night. That worked! If there were any side effects I slept through them!
Before I started taking Carbamazapine I used sensitive tooth paste from the dollar tree ( Stopped the pain immediately!
It just didn't last for long.) & slept with a wash cloth between my teeth.
Maybe half the dose at night would work for you also.
Sorry to hear that your going through a hard time at the moment. I didn't used to mind the cold weather but since I started getting TN I don't like it at all now. I'm in the UK too and my flat is very draughty. Every time I feel a draft on my face I get this prickly electric shock/stabbing sensation up the right side of my face. I am spending most of my time in the bedroom because it's the warmest place. I would like to put the heating on but I can't afford the bills. I'm 63 so I don't yet qualify for the winter fuel allowance. I'll claim it as soon as I can though! A balaclava and a hoody is a good idea. I wear a full face covering which I bought on ebay. It came all the way from China and was only £1.50! Friends say I look like a ninja when I wear it. Lol. I take it off when I go into shops in case it spooks the security guards 
I suppose it would be much worse for us if we lived in a colder climate. It doesn't bear thinking about. Are you able to work with the pain? Luckily I only have a part-time job it can be a strain at times. I have to talk (and smile) with people when I don't really want to. It's painful to do so. Tegretol seems to be helping me and takes away the pain for a few hours or so but I don't like taking them because of the side effects. They make me feel sluggish and I keep dropping things around the house because my hand sometimes jerks. I'm looking for some kind of natural alternative to Tegretol at the moment (if there IS anything out there). Anyway, good luck!
Hi there! I feel for you in the extremely cold weather you are experiencing at the moment.
Have you considered any of the Percutaneous procedures (through the cheek) ie, Balloon Compression and/or Glycerol Injection ? I haven’t personally tried any of these, but I have read, through various internet sites and others who have posted on this site, that they can be very successful. Just a thought, but may be worth considering for more long term relief. In the meantime, maybe consider trying a different medication that could work better for you. I’m taking both Lyrica and Trileptal. Be warned that if you do start Lyrica you MUST begin with a 25mg dose for 2 weeks, then it can be increased to 50mg for 2 weeks, and so on until you reach the prescribed amount. The reason for this is that it is very strong. When I first went on this medication, one 75mg capsule knocked me out for the rest of the day, and now I have 3-4 75mg per day quite happily!
I wish you all the very best. WARM hugs. Pat
I am fairly new to TN. I am having CyberKnife procedure done next Friday. I am hoping that it is a permanent fix but in another forum (that is now closed) I heard of some severe side effects of CyberKnife therapy. It is RadioSurgery. Rather than the invasive brain surgery. I am praying that the Lord uses this treatment as a permanent fix for this. I read that one patient received acupuncture from an experienced acupuncture doctor and it WORKED! I totally believe in acupuncture as it has helped me for other muscular issues that nothing else helped. I put this here so that you would know there is another option. I understand the desperation!!!!!!!!!! Check out a really good acupuncture doctor. There are fakes out there!
I am fairly new to TN. I am having CyberKnife procedure done next Friday. I am hoping that it is a permanent fix but in another forum (that is now closed) I heard of some severe side effects of CyberKnife therapy. It is RadioSurgery. Rather than the invasive brain surgery. I am praying that the Lord uses this treatment as a permanent fix for this. I read that one patient received acupuncture from an experienced acupuncture doctor and it WORKED! I totally believe in acupuncture as it has helped me for other muscular issues that nothing else helped. I put this here so that you would know there is another option. I understand the desperation!!!!!!!!!! Check out a really good acupuncture doctor. There are fakes out there! I'm so very sorry you are in pain! This is life changing but NOT for the good! Debilitating!
Hi RachRoux,
Yes, heat works. You can consider a warm scarf to protect your lower face. Ideally, try to avoid consuming sugar/sweets because it causes inflammation of the nerve (making the pain even more unbearable. It kills me as chocolate was my comfort food!
Please consider visiting a licensed acupuncture doctor/clinic around your area. It worked for me. I had TN for 3 years. It may take more than 10 sessions but worth it.
Hope you get well soon,
Mark
Published article on "Successful Treatment of a Resistance Trigeminal Neuralgia Patient By Acupuncture":
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2797593/
Hi Stillettospy,
I have just completed my acupuncture treatment (30 sessions). It worked! If possible, please try it before the invasive surgery.
I used to have radiating pain every 15 minutes!
Get well soon!
Mark.
Published article on "Successful Treatment of a Resistance Trigeminal Neuralgia Patient By Acupuncture":
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2797593/ ;
Hi Patricia,
Please consider visiting a licensed acupuncture doctor/clinic around your area. It worked for me. I had TN for 3 years. It may take more than 10 sessions but worth it.
All the best,
Mark
Published article on "Successful Treatment of a Resistance Trigeminal Neuralgia Patient By Acupuncture":
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2797593/
Sorry to hear you are suffering so much from the cold weather. It seems wherever we are TN catches us up! I’m in Kenya at the moment, it’s very hot but also windy and even the warm breezes are zinging across my face. It’s even difficult to wear a hat as that triggers pain from the top of my forehead. Makes me realise how much I took for granted before TN started.
Hope all sufferers feel better soon.
Hey Vicki, I do have a split dose half in the morning half at night how much are you taking if you dont mind me asking just wondered if i am on a low dose and need to increase.
I find brushing my teeth a massive trigger for me but i will give using the sensitive toothpaste a go.
Thank you and happy new year Xx
Oh Stephen I'm so sorry to hear you can't afford the bills, with this kind of pain you should be given access to heating discount at least! My balaclava is a full face covering one too and it was also from ebay. Great buy and i definitely look like a ninja!
I can't work no as TN is just the start of a whole host of illnesses I have unfortunately. You do so well to work with this terrible illness it is so debilitating! Hopefully you will finds an alternative to tegretol if you do let me know as i too hate meds and i also hate the side effects. I get really jerky too. Take care, and happy new year Xx
Hi Patricia, I haven't really been given any info on anything other than medication treatment. I have tried a few different meds so far and not having much luck but maybe it's because my Neuro is a big pain in the bum and never listens. *ARGH* I would try anything right now, I feel like the meds are just subduing me so i feel sleepy and less inclined to do something about the pain. I have been on Lyrica twice now ( not that i wanted to the 2nd time) and i have no words to describe just how awful that drug is. I felt like i was getting Alzheimer's it was HORRIBLE! It took me months to recover after completely coming off it and to remember simple words again. As you said it is very strong so please be careful. I know several people this has happened to it is not just me. Sending hugs back Xx
Hey StilettoSpy, I have heard about this and it looks amazing I would do this in a heartbeat. I really hope the procedure goes well and it is a fix to this awful pain. How did you go about getting this procedure? Not sure if you are in the uk but if you are, are you private or nhs? Thanks and good luck Xx
Hey Mark, I have been visiting an acupuncturist but unfortunately no success there for me. I'm not sure uf it is because i have a lot of illnesses and so my body is a bit hard to target. Who knows but I'll keep searching and i do keep going to accupunture anyway as it chills me out. Really glad you found relief from it. Xx
Well there goes my plan to move somewhere hot haha!
I too get the awful pain when i wear a hat it's so annoying!
I hope you manage to get some wind free days.
Take care of yourself Xx
Hey PerkinsPea thanks for all the tips, Sorry to hear yours has flared up too it really is pants. I will definately try the cbd oil anything to help relax is always good. I have just been looking at what foods to cut out of my diet for another illness i have so it will be quite easy to tie in cutting out foods here too. It's strange how foods can have such reactions on our bodies! Sorry to hear you couldn't get the glycerol injection, kittens can be little buggers! I have a kitten and 4 cats and always covered in scratched you cant not love them. =) Sending hugs Xx