Hi Kim,
You know how I just endured 3 weeks straight of pain? Well pre-Xmas my husband and I were talking about a trip with our daughters pre mvd. And then I had those horrid weeks…I had two good days in a row and we decided very last minute to leave cold Alberta, Canada and head to Palm Springs. We rented a condo with microwave for my heating pads=my saving grace for taking the edge off and away we went.
If I was bad they could still go out and about and I could sit by the pool or lay down in the condo.
I hoped and hoped the different climate would make a difference…
It didn’t.
The sun and warm weather lifted my spirits, and it was sooooo good to be out of my house ( I’ve been home bound for over a year.
BUT I still had intense pain, and the one day we drove to the coast I took hot pockets for my face for the drive and then we walked along the beach, it was lovely.
When we got on the pier, the wind, ocean breeze hurt just as much as the cold wind here in Canada.
I couldn’t enjoy the pier at all.
I was disappointed, because I thought maybe, just maybe the heat would make a difference or the climate.
TN was with me everyday.
As I said the trip was lovely in that I was somewhere new out of my house, and the sun was a nice change, but it didn’t affect my TN.
We had a great 5 days together as a family and I am so thankful we went, and proud that I was ok with not participating as much due to pain I accepted it.
I’ve had 2 good days since meaning 2/10, the rest have been 8/10. Same as with Palm Springs.
I live in Michigan and endure long winters. Last year I tried Florida, Mexico, and Jamaica during the winter. I learned ocean breezes and tropical humidity did not help the pain. I tried Mesa AZ for a month in October/November 2012. It didn't rain and I was able to tolerate the breezes and sit outside and take walks. It's the most normal I have felt in 3 years. I am going to Ajijic Mexico in April for a month. It's claim to fame is having no rain and mild wind in April. I am hoping for a chance to take a walk. I dream of being able to hike or ride a bike with my husband.
May have to try to go back to the desert part of mexico or try Arizona --never been there!
Didn't hurt in Jamaica because I was on trileptal for honeymoon.
Last Post-MVD time it hurt - I had my head over the railing on a cruise ship (last april fools day 1st anniversary)--- then the pain disappeared--- UNTIL this month - wore a patch first time yesterday --- 10 months pain free went fast
I can't rate TN on a scale of 1-10 - doesnt' do it justice --- still at a 5 or 10 out of 100- comes and goes -
BUT I've worn my scarf a handful of times that I've actually left the house and I was hoping I could throw it away!!!
We have some items in common. Dr Casey did both my MVD's (love him) and I too was diagnosed on April 1 2010. I was type 2. First surgery took the ache from every day at a 10 to a range of 6 to 10. Better than every day at 10 however I wanted to be cured. I went back to get additional pads and the old pads replaced with thicker pads. I had to wait a year between surgeries due to breast cancer and chemo or I would have been back in within 6 months of the first surgery. After the second surgery I have experienced more jabs and now have type 1 and type 2 TN both sides. I lost my hearing from the first surgery. Would I do the surgeries again. Yes. I still hurt but I have occasional good days. Before surgery I never had a good day. My focus now is on lifestyle change. Finding the right climate and removing stress.
Clarification- I meant my 1st wedding anniversary (april fools day wedding)
on cruise LOL -- My dx was Oct. 2010 - MVD was Oct. 2011
There is a man in my local TNA support group who has had I don't even know how many procedures and meds- and 2 MVD by Dr. Casey -- he still suffers other ailments + TN - (His stress reliever is going to Aruba several times a year)
It's almost sadder to me when you go to the best - and he can't fix it.....if you go to MVD by somebody who has only done 50 -- well then - you are gambling.
I think we should raise enough research dollars that most all of us could
test-run living on a stress free warm island for 1 year and see if it helps! My hypothesis is that some will feel better and some won't!!
Shinemoon said:
We have some items in common. Dr Casey did both my MVD's (love him) and I too was diagnosed on April 1 2010. I was type 2. First surgery took the ache from every day at a 10 to a range of 6 to 10. Better than every day at 10 however I wanted to be cured. I went back to get additional pads and the old pads replaced with thicker pads. I had to wait a year between surgeries due to breast cancer and chemo or I would have been back in within 6 months of the first surgery. After the second surgery I have experienced more jabs and now have type 1 and type 2 TN both sides. I lost my hearing from the first surgery. Would I do the surgeries again. Yes. I still hurt but I have occasional good days. Before surgery I never had a good day. My focus now is on lifestyle change. Finding the right climate and removing stress.
I live in Seattle and find that even our mild Fall/Winters in the 40-50's can cause my nerve to hurt. I have to cover up my head and ears with a scarf.
I also think the constantly changing weather and weather fronts coming through here have an impact on the frequent migraines and headpain I have.
I DID notice that when I was in Eastern Washington (Wenatchee/Moses Lake area) where it is dry and arid,little rain) last summer, I felt really really good for those 10 days. Lots of sunshine (I think we need lots of vitamin D, more than we naturally get and this can help with our nervous syster/nerves also).
I notice, like many people with TN and other forms of neuropathic pain, that my pain worsens with barometric pressure changes--storm systems primarily. I did some research in 2009, to see if there might be a better place in the U.S. to live for people like me, evaluating storm activity for the past 20 years in the US. I found that in the U.S. , the least amount of storm activity occurs in Hawaii and southernmost California.
After fantasizing about this for a couple of minutes, of course, I realized that any minor improvements found from such a move would, sadly, be negated by living so far away from our family and friends!
...Now if I could only get all of them to move to California or Hawaii...
I live in New York. It is now June and the temp is in the 80’s and I thought my pain problems would be greatly reduced. Holy cow am I disappointed! It is very humid here and the pain continues every day as it did in the 3 other seasons. I wear a scarf constantly. I don’t know what to do. I have a plan to go Florida very soon but I think the humidity may be a continued problem. Perhaps a desert climate would be better. I have never been. Phoenix? Texas? Somewhere drier. I actually feel I need to be in survival mode. Sounds quite dramatic, but I am frustrated. Please weigh in with ideas.
Thanks a heap.
Christine