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Foggy's "Invisible Illness" Support
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Trying to cope with TN

I've had TN for 6 years now. Over this time I've taken Gabapentin, Amytriplin & Carbamenzapine. All have roughly the same side effects which are tiredness, foggy brain, unable to pronounce words, dizziness and a few more. Carbamenzapine is the only one that has helped me until April this year when I had severe attacks and could not eat or drink. Which resulted in me being admitted to the hospital to be hooked up to saline and Phenytolin. This is a heavy medication. I was given a high dose obviously to calm down the nerve which gives you hallucinations & unable to walk. I was out of hospital 3 days later with a prescription to take a lower dose of phenytolin for a short period of time. Only take this if you can't take it anymore and it's only for a short time as it really does effect your daily life. Next stage for me is talking with the Neuro Surgeon about procedures. I'm asking if anybody has had a procedure and what was the result.

Keep thinking positively and don't let your spirit drop.

Fellow sufferer

2 Replies

Hi Tlcp girl I feel your pain, I was diagnosed with TN at the beginning of this year.

Sorry I can't help with regards procedures as still at the managing with meds stage. In case your unaware there is a Trigeminal Neuralgia (TN) UK group on Facebook.

I've found chatting with people in the same position very helpful, and have received some good advice. There are people in the group that have undergone various procedures, so will be able to answer your questions.

Hope your pain free soon.

1 like

Ask neurologist to get you a neurosurgeon to do "balloon compression" 30min op, no scar and instantly pain free! I'm awaiting this op again after 8yrs 😁 Down side constant talking, eating and wanting to go out! It's total freedom! Oh yeah gained weight, dropped it now but could enjoy food and drink again!


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