My name is Patty and I am solar powered. That is my confession. I live in a climate where at least six months of the year it is cold. During the three or four months when we have an abundance of sunshine I like to be outside. I enjoy gardening;it is my therapy. Or I should say was. The Carbamazepine makes me so sun sensitive. It makes my dizziness worse and gives me heat stroke symptoms very quickly. Only an hour or two outside makes me feel so bad I will be stuck inside on the couch for several days. Being outside is yet another thing taken from me by this disease. Usually I can suck it up and put on my big girl panties but today I am struggling. And so I turn to you and ask you if any of you struggle with these issues?
Have you tried the cousin of it… Trilepetal? You could ask pharmacist if it would be same… Or switch completely to gabapenin? There are still over 40 med combos to try…don’t give up on your sunshine!
I can’t take the sun anymore either. I really don’t know if it is meds (gabapentin ) or the light causing the trigeminal nucleus to go into overdrive or a combination of both. I dread August, that’s when it gets me the worst. I used to live to be outdoors, now I hole up in a dark room in the summer and count the minutes until sundown…
Gabapentin was a death med for me. Gave me hallucinations and tremors after only two doses. Never felt that bad ever. I have tried five drugs in a variety of combos and I literally can only tolerate the two I am on and in very small doses. I am scared and tired of trying new meds and having reactions. I have tried strong sunscreens, wearing a hat and sitting in the shade but I still feel lousy. Last year I only felt this way early in the season but this year seems different. Camping is going to be quite a challenge this summer.
Patty the tegretol has his effect on me too, I can only tolerate short amounts of direct sun.
I’ve found that drinking lots of water, more than normal when I’m outdoors helps a lot. Keeping hydrated works to give me more time in the sun.
(( hugs )) Mimi
Hi Patty. I thought I was crazy but hearing what happens to you has helped me understand my problem. I don't spend a lot of time outside because I work. What happens is when I am driving to work the sun in on my left side, the side of my TN. Sometimes it feels like the sun is actually pulling the nerve out of my face and I hold my hand in front of my face because it is almost unbearable. I also take Carbamazepine and Neurontin. So, I do understand what being in the sun can do to you.
EXACTLY! I have been off of this med for a little while (post MVD) and went to Florida…I am fair - BUT - I got sun poisoning on my legs after just a short while AT THE END OF THE WEEK of pool and beach time! …had been off meds for 1 week…now it is 2 weeks later and I’m still peeling!!! The meds make you EXTREMELY sensitive!! Ugh… Be careful!
BTW: Trileptal and Tegretol both have same affects on the skin…
Success! I went to the beach today and survived. Slathered on the sunscreen, drank lots of water and spent most of the time under an umbrella. But still, i went to the beach and enjoyed myself. The ride home was a bit uncomfortable as i was quite dizzy. Today was a good day and i am grateful
YAY for you! I am a gardener too and it is my therapy... so far I haven't had a reaction but i am on a real low dose of epitol.
We can't let this ailment take away our joy!! ;-)
The same applies to me. I used to live for summer as well and now I feel trapped inside. The heat makes my face and head explode with pain especially burning and throbbing and headaches!! I am also on gabapentin and feel te same way as to not wanting to switch meds and get on a crazy one! Good luck to all of you and lets hope someday we can beat this thing!
I cant stay in the sun long or I get a flare up about an hour later.