This is killing me I have ridden since I was 5 years old that was a long dam time ago and today was the second second big attack I’ve had while ridding , Ridding has been my serenity my whole life to think that this may be the end of it is really depressing me and I’m not a depressed person! Ugg this is so frustrating
Oh Ted - I feel your pain. My husband and I have been riding for 30+ years. I have had TN for about 6 years now and until about 2 years ago was able to keep it under control with meds. We used to ride 10-15 thousand miles a year. Last year I rode once with him, about 1 hour and this summer I have gone on a couple of short rides but paid for it for days afterwards. We sold our 2010 Ultra Classic this spring, he didn't want it "just sitting" in the garage. We bought a Heritage because I know that he still loves to ride and would not be happy without a bike. I feel so guilty, he often makes comments that our riding days are over. Not in a way that is mean or hurtful, but in a sad, lonely way. Riding was always our get away. Time for just us. We don't like to ride with a lot of people just by ourselves, like you said, our serenity. We have seen some wonderful country all over the United States. Both of our daughters grew up riding with dad and now have their own bike. Both are married to men that love to ride. It seems so wrong that we can't ride with them any longer. I often make excuses to drive what we call the chase car when our grandkids take turns riding with their parents or grandpa. I have tried 5 different helmets trying to find one that will help. No luck, it is just the vibration of the bike I'm afraid even when I keep the wind out of my face. These are the things that I have lost to TN that make me so sad! I know that we will continue to tour, just in a car now. We will always have our memories. Chin up, maybe meds will keep you under control and riding for a while yet. Good Luck!!!!
Hope thanks so much for your comment, It’s nice and sad to know that someone knows how I feel. I can’t imagine not being able to ride I have a heritage now and it’s my baby I haven’t figured out what the trigger for me is yet I rode the last two weeks pain free! Had been completely pain free for 2 weeks and then the other day woke up and immediately had eye pain today I was ridding with a friend he was lead when bam the sharp dagging in my eye hit I began to pull over and thank god it stopped, of course I was an hour away from home and then anxiety kicked in about fear of a flare up again double whammy! I’m not giving up yet, I was thinking about a full face instead of a scull cap but my fear on that was not being able to get it off during a flare up because I get so sensitive any type of touch makes it hurt more! Thanks for the support I hope one day you might ride again ! Hey if you can ride a rice burner a Gold Wing has no vibration
Ted, I am really sorry but just wanted to let you know that TN is so unpredictable. I know it is not the same at all but for the whole of last year i was not able to cycle and now quite suddenly it's not a problem anymore. It is quite possible that you can motorcycle again next spring!
I am the same as Deanna ... last year in winter I couldn't ride no matter what, some draught from somewhere would get into my helmet and onto my face no matter how much I wrapped myself up in a scarf etc. It really sucked but there's a light at the end of the tunnel. Now I have mild pain now and then now my meds are working better. This winter this year (in southern hemisphere) I have been able to ride with minimal pain. 2 weekends ago I even went in a big rally sitting in the sidecar on hubby's bike. And I can use my bike to go to work and not pay for parking, yay! So hopefully you will get some relief once you have medication that works for you. Even if it means not riding in cooler weather ... you may still have some riding in warmer weather :)
I am right there with you. I have rode my whole life, it was always one of my favorite escapes from the “real world”. A beard has helped me. A windshield is a big help too. When the weather gets cool is when I have had the most problems, not so much in the heat of summer so I use a wool scarf when it is cold out. But yes it it’s very scary when you are riding down the road and BANG, a TN attack. I am very stubborn and will continue to ride. I refuse to let this desease rob me of everything in my life that had made it worth living.
Thank you all! I’m not giving up I have been blessed to live and Ride In many different country’s Like the UK NZ AUS and of course USA and I can’t see that ending! It’s Scary when it hits and I’m able for the most part to pull over quickly .
Windshield and full face helmet.If you cant get the helmet on with it causing an attack or pain,you shouldn't ride.The only time i had an attack riding was i just jetted off down the street with no helmet.I made it about 100 yards and barely got pulled over.It was a long pulsing attack and i thought i was going to have to leave the bike,but it finally eased off of course.I'm bikeless now and also wondering if,when i'll ride again.I'm pain free after Gamma knife for now.Good Luck!
Have you tried one of those buff face mask things under the helmet? They come in lots of different fabrics and just recently I tried the polar one during a vacation and it really helped keep the wind away from my face.
Hope you are able to find something that helps, it is hard to consider giving up the things we enjoy.
Hugs
Trish
Ted - A RICE BURNER???!!!??? When you ride the best you never go back! ha, ha. Seriously we did ride and Aspencade for several years about 20 years ago. I can't imagine being the rider, as just a passenger I have the luxury of hiding my face in my hands and gritting my teeth to get through it. My husband says he knows when I have an episode of pain because I will let my helmet come down and hit his when I am trying to hide my face. I found a 3/4 helmet with a full face shield that works really well to keep the wind off of my face. You might try something like that. A cowl of some kind, I wear a fleece one that I can pull up on my chin when it is cold is really helpful too. Now how can we get that Harley rumble without the vibration??........................