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Old 04-27-2022, 06:59 PM #1
TN Really Hurts TN Really Hurts is offline
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Default Trying to Figure Out my Next Steps

Coronavirus in January
Shingles Late January
Went back to work (Truck Driver) after shingles

February Trigeminal nerve fired over top of my head and into my right eye,
Felt like someone was stabbing me with a knife in my neck right through to my eye and started twisting it around. Pain at the top of my head was unbearable. I started screaming and pulled over. I went back to terminal and told then I had to see a doctor.

I was diagnosed with TM. I am up to 1500 mg of Gabopentin and 120 mg of Trlipetal a day.

When I first talked to my nuerologist I was in a lot of pain and told him I did not want to live like this. He said 6-9 months of drugs and I should be OK. Now after 3 months I asked him yesterday to discuss alternate forms of treatment with me. He said I only do this. which is to prescribe drugs and talk to me for about 5 minutes once a month. I said I would like his opinion on other treatments like Gamma Hot Knife and he got all upset, and told me I would be on medication the rest of my life, He walked out on me and scheduled my next appt for 4 months from now. I guess he had other patients to get to and I guess my allotted time was up.

My chiropractor has been kicking my butt but he is making progress. I can actually touch the right side of my face now and sometimes stand in a breeze without running back in the house.

So Iam faced with
Finding another nuerologist
Trying myfacial release. No insurance and high cost.

Anyone have any other suggestions? I don't want to live my life medicated, but I tried reducing and that doesn't work.

I just want my life back.

Thanks in advance for any advice.
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Old 04-28-2022, 09:19 AM #2
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Welcome TN Really Hurts. Someone will be along.
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Old 04-28-2022, 11:11 AM #3
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Welcome, TN Really Hurts,

Your TN pain sounds very severe, and it must have hit you while you were working at your truckdriving job.

I'm not sure why your neuro reacted so dismissively. Maybe he just disapproves of the gamma knife procedure in general as it does seem to be a fairly involved experience--and you might not see any improvement in the TN until a month or more later:

Gamma Knife Surgery: What it Treats, How Performed, Risks & Benefits

This is a radiation treatment, and you might want to consider whether you really would like to try it. It sounds as if you have been noticing some progress in your battle to get rid of the TN pain.

You might want to think about staying with the more conservative drug treatment that your neuro has prescribed--and you could probably do that even if you change neuros.

TN seems to be one of those neurological problems where time and more time is needed, but if you can wait it out, that's probably the best way to go. But if the pain is unbearable and you're unable to function, you should find a neuro who will be willing and able to offer you a different treatment, like the gamma knife procedure.
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Old 04-28-2022, 02:10 PM #4
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I believe TN has been discussed here before and this is where I first looked on the net.

Alternative and Complementary Treatment Options for Trigeminal Neuralgia | PainScale

Did you by chance do the covid shots? They are known to exacerbate health issues...
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Old 04-28-2022, 02:46 PM #5
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Hello TN Really Hurts
You really have been through a lot with Covid in January and Shingles in February and then the TN!

We do have a TN Forum here, and although it is not currently very active, there is a lot of archived info there that might be helpful to you as well
https://www.neurotalk.org/trigeminal-neuralgia/
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Old 04-28-2022, 10:11 PM #6
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Default TM

Thank You all so much for your responses. I am out of family leave, but I spoke with the admin and believe they will give me a two month extension. I am 63 and if I can work 1 1/2 years more I can get Medicare. The biggest problem I have is the cost of COBRA. That is of course dealing with this pain and waking up every morning with my nerve freezing cold, and stumbling and forgetting everything due to the drugs,

I was leaning towards Gamma Knife as it is less intrusive, but after reviewing the information in this website (can't post link because I have fewer than 10 posts, ************* I am leaning towards MDV surgery if I cannot resolve this in the near future. It appears to have the highest long range success rate. And I hate the idea of surgery. In the meantime I will continue with the chiropractor and may try myofascial release. I need to do more research on that.

Most of all thank you because I am beginning to see light at the end of the tunnel. My old neurologist was painting a very dark picture.

Hopefully I can get my life back.

Thank You
Kevin
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Old 04-29-2022, 10:11 AM #7
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You might look at short term disability. It can tide you over til retirement age or until you are able to go back to work.
https://www.neurotalk.org/social-security-disability/

You might look into..
Cold laser - also called soft laser or low level laser
Acupuncture
Acupuncture in the management of trigeminal neuralgia - PubMed
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