TN2 & Cold weather is killing me!

Posted , 7 users are following.

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

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  • Posted

    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 

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    • Posted

      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

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  • Posted

    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!

     

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    • Posted

      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

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  • Posted

    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.

     

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    • Posted

      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

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    • Posted

      A full pill is 200 mg. I find using sensitive tooth past helps. I buy it at the dollar tree.

      I only take that at night. In the morning I take Turmeric     2 400 mg. El Carnatine 400 mg (I buy these on line at Puritans Pride. Buy 1 get 2 free!)

      Also Glucosemine. The combo works during the day but not at night!

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    • Posted

      Hi Vicki, Rach,

      Yes, toothbrushing used to trigger a flare up!

      I use warm water when brushing - try bushing the shower if you have no running hot tap.

      Stay warm,

      Mark

      -1 degree celsius today.

       

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    • Posted

      I use sensitive toothpaste and before the tegratol began working, Brushing my teeth triggered a major zap.  It didn't help me.  The Tegratol is working right now and supposed to have CyberKnife this week.  I am considering holding off and giving the acupuncture a try.

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  • Posted

    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 smile 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!

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    • Posted

      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

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    • Posted

      Hi, I might ask my doctor if I could qualify for some kind of heating allowance even though I'm not retired. My landlord said he would be willing to pay for a new window at the back of the house (which faces the sea) so I will mention that to him again. He mentioned noticing the draught during one of his yearly inspections but at the time it was before I developed TN and it didn't bother me too much. I'll remind him about that this year though! Fortunately I have probably the best landlord in town and have been with them for 18 years! I'm sorry to hear that you have TN on top of other illnesses. It must be awful. I would apply for sickness benefit but they seem to give everybody 0 points when they go for medical assessments these days, so I wouldn't hold up much hope of getting it. At the charity I work for, we see people every day who should not be having to look for work in the state they're in, but they're being forced to go through the process of appealing. Its a scandal. Yes, I'm looking into an alternative to Tegretol and will let you know if I find anything that works for me. Let's hope the New Year will be a better one for us. I'm just sitting here with a g&t. It's enjoyable but because its cold its set off the ache and little electric shocks on the right side of my face. Seems like we have to put up with the pain along with the pleasure! Best wishes

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    • Posted

      Yes Stephen definitely ask your dr. We have to get what we can when we are in this much pain on a daily basis. It's great your landlord is good it is a rarity these days. Benefits are getting worse unfortunately, I have an assessment next week with them about my pip which i am so anxious about i really hope they dont take it off me i wont be able to live! You should try drinking with a straw, it helps me a little Xx

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