Hi guys a quick update. I had my injections yesterday. I went into the clinic with uncontrollable spasms and came out without them. My face hurts still in fact my whole body hurts as this last attack has been fairly continuous for nearly a week. I am hopeful though that given a few days I should feel the full effects. This week has been very bad and brought me to tears each day at work. Its quite a humiliating experience but all we can do is keep on going huh? Sending love x
I'm sorry to hear that you've suffered such pain for a week! I sure hope you start feeling better soon!
This week I go in for my 3rd Botox treatment, each about 3-4 months apart...and it has worked for me. I am still amazed about the "before" and "after" and seems like a world ago when I would also be in pain all day and try and keep the tears at bay at work, had to be careful how hard I stepped down to not irritate the monster, and in general have my life be ruled by the pain and mumbled speech and all the rest of it. A few weeks ago the pains started again, but then stopped. It is always possible I am in remission, as I have been before over the last 10+ years, but the timing suggests the Botox clearly worked, not immediately, but then it kicked in...and I have been relatively pain free since the shots started over a year ago. I continue on the Vimpat and Baclofen, as I don't want to take any chances, but at reduced dosages.
I had botox in my back *shoulders, lower neck and lower skull* for my Occipital Neuralgia. The first 10 days were hell as the doctor gave me too much botox (we will cut back the dosage next time) it caused me to have no control on my neck and had to wear a cervical collar. I had that done Dec 3 so it's been 4 months and it is still working. I don't get those knots, tightness, burning in my neck, which in kind relaxes my face and has greatly reduced my TN symptoms also. For me it was a winner. I plan on having it done again in June. Many people say that the results are best with the 1st treatment then not as beneficial with each subsequent injection. I hope that's not true in my case, but if it is, it means I am an excellent candidate for nerve decompression (not MVD) but the type a plastic surgeon does to release the nerve in the upper neck. I already have picked out who would do my surgery, but am hoping that continuing with botox is the answer. If I can stay away from surgery, I would be one happy camper! I am surprised by how many non-cosmetic benefits Botox has!
Oh god that's sounds shocking!!! My pain doctor is amazing she is so skilled and knowledgeable. I can't believe its worked I feel like its a minor miracle! After nearly 5 years of pain I've found something to help and I'll definitely keep it up although as you say the next injections aren't meant to be so effective. Im due to see a surgeon soon and I would love to make the relief of the nerve permanent. I think this does make us good candidates for surgery if botox is working. Up to now doctors cant seem to agree a diagnosis. Some say atypical tn the last one called it atypical facial pain with no clear location to the trigeminal nerve. Whatever its called this treatment has worked for me! Its so hard isn't it? So hard to describe the impact on life either. Ive just had a text to let me know that Im having a lesson observation on Tuesday with my boss and deputy head of our school. Great just what I need a bit of extra pressure... why not!!! Outsiders just don't get it. Love to everyone today x
Hi Helen,
I hope the Botox injections take your pain away. I have been researching the efficacy of Botox for my TN situation and it seems that it is a good to very good solution for many patients. It works for many with intractable migraine pain which also emanates from the trigeminal nerve, so it makes sense that it will help TN patients as well. I live in NJ and found a neurologist in NYC that has experience injecting Botox for TN patients with success. Please keep us updated on your progress.
Peace,
Adele :) Sending Prayers!!!
I have had Botox injections for a year every three months. It has helped a lot. My Botox are done on forehead above ears behind ears back of my head and the trap muscles on my neck. I have migraines , a history of shingles in my face and neck , and a whiplash injury from a car accident. Not sure which one caused the worst pain but I can say I have much better quality of life after Botox.
The only bad experience was after the first injection I needed prednisone for swelling of my face due to Botox. Next time I did not need prednisone. Now getting shots of Botox every. 3 months.
Wow thanks me
I get Botox every three months, it takes up to a week before they start working.
I don’t let the Dr. get too close to the eye cause the first time he did it some of the botox evidentally leaked into the eye cause I saw double for the most of the next three months, don’t want to do that again. Just wondering how come yours take affect so fast. Does your face droop from the Botox?.