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
1 like, 36 replies
patricia_2468 RachRoux
Posted
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
mark44210 patricia_2468
Posted
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/
RachRoux patricia_2468
Posted
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
StilettoSpy RachRoux
Posted
RachRoux StilettoSpy
Posted
StilettoSpy RachRoux
Posted
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!
mark44210 StilettoSpy
Posted
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/ ;
mark44210 RachRoux
Posted
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/
RachRoux mark44210
Posted
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
mark44210 RachRoux
Posted
I am sorry to hear that your acupuncturist did not work. I switched acupuncturist when the first one did not work (after 3 sessions). They are like GPs and specialist doctors who may have different experience/techniques. I find that using one who has more than 10 years of experience and have treated TN patients successfully (like how we pick surgeons as not all are equally competent) are good criteria when selecting healthcare provider.
Hope you feel better soon,
Mark
RachRoux mark44210
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StilettoSpy mark44210
Posted
You said that you had about 15 sessions of Acupuncture. How often did you get the treatments? 2-3 times/ week?
mark44210 StilettoSpy
Posted
I had more than 15 sessions - did mine daily (5 days a week as the clinic was closed on weekends). By the 3rd session or so, you will know if your doctor is doing the right thing.
I hope you will have a positive experience like I did.
1) Cut down on sugar.
2) Stop work if possible (at least break away from our daily routine of stress or negative thoughts) and read books and listen to smoothing music.
The above helps a lot as well.
Warm wishes,
Mark
mark44210
Posted
StilettoSpy mark44210
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I'm in Fort Worth, TX. I have an acupuncture Dr. but he recently retired and his son took over the practice. I'm going to try to talk to them tomorrow. Your comments and article gave me what I need to need to talk to them. Thanks!