I am still waiting (since january) just to get a date for my MVD. It was supposed to be sometime in May. Now they say probably more like June, July or August. My current job (which allows up to 15 weeks paid medical leave) is being made redundant very soon. My new position will give a maximum of 4 weeks.
Recently the pain has been far worse again. Does anyone else find the change of seasons a problem? Our temperature her in the last week has ranged from -1 C to +18 back to -4 within 7 days with beautiful sunny days, thunderstorms, sleet and snow.
Also…I may just give up eating drinking and talking. Less pain that way. ( just being over dramatic).
Sorry for complaining. Just needed to vent. I realize we all have these problems here and I hope a miracle cure is discovered (probably somewhere in the amazon) for all of us.
I was just thinking about you/ your MVD date last week?!
Sorry to hear about the delay…so frustrating in so many ways…
You’ve every right to complain / vent Pierre! Here is where you can do just that, as we all understand .
Here in Alberta we’ve been getting pressure systems and fluctuations in temps too and YES it does affect my TN. I’m also prone to migraines but that’s something I’ve had since my teens…
Pierre, did you ever look into that lidocaine cream called Emla, you can buy it at Shoppers drug mart without a prescription.( the tiny tube costs 15.00 the larger one 50.00, it’s not cheap, but you only need a tiny amount ) It comes with patches, but I don’t use them as my skin is sensitive to them. I use the cream on my face, along my jaw line etc and it provides at least 40 minutes of minimized pain. I also use orajel on my left bottom teeth and gums…it helps. None of the above takes the pain away completely but it does minimize it all.
My heating pad “Magic Bag” also purchased at Shopper’s provides relief too.
I know we all respond differently, but maybe something to try…
Thinkng of you and sending positive thoughts…
Mimi
Hi Pierre
I hope your surgery comes soon. I am new to this group and have just been put on the list for MVD in Winnipeg in about a years time. I live in Yukon and of course no surgeon here. Who is your surgeon? I hope all goes well and I am looking forward to hearing about your experience.
Thanks for your kind words Mimi and Valerie. I have used the lidocaine cream but with little effect. The oragel only helps for about 5 minutes. The heat pads help most. ( actually I lay my face gently on a hot water bottle )
Valerie: my surgeons name is Dr Pokrupa. He’s a very nice guy with experience with tn and mvd in Kingston Ontario.
I feel better this weekend. I’m off work so have been able to increase my tegratol dosage while maintaining lyrica at prescribed levels and the weather has been better.
Happy easter everyone. Hope you all enjoy pain free moments or even days.