Bad day today, had to stop a few weeks ago Gabapentin due to stomach inflammation (600 mg) and also stopped Xanax (only two a day) because it made me into a zombie. Since I stopped these medications my scalp hurts and itches all the time, and I feel today like my head is in a vice grip. I think what is, some days, as bad as the pain (OK, no way near but still heartbreaking) is how this changes your personality and life. I used to be the party-giver, the go everywhere and do everything person, who liked to think of herself as independent and loved dressing up and always looking at the bright side. Now I feel like I belong in a nursing home. Sometimes I don’t recognize myself in the mirror. Sometimes I feel like I’m going to have a nervous breakdown!!! But I know others have it worse than me, so I keep it inside and try to get through every day. Look at the video of Grey’s Anatomy, the musical episode, of someone singing “The Story” to herself. The dressed up healthy one is me, singing to her sick self in the bed. I’m keeping this in mind and trying to stay busy today. I’m going to start a low dosage of Gabapentin again soon and continue on my bland diet (lots of milk) to see if I can tolerate it. Maybe there is something else for TN that is available as a pill, not a capsule, that I could dissolve in my mouth. But boy, that Gabapentin really worked for me. It is very frustrating to have somthing right there in a bottle that I know would work but I can’t take. So I will try it again. HANG IN THERE EVERYONE, THERE IS A WORLD OUT THERE AND WE WILL PARTICIPATE COME HELL OR HIGH WATER!! OR HELL OR NERVE PAIN!!! (wait, isn’t that the same thing?) Love, Susan
Just remember the drag queen motto from "To Wong Foo Thanks For Everything Julie Newmar" -
1. Ignore Adversity
2. Abide By The Rule sof Love
3. Let Good Thoughts Be Your Sword and Shield
4. Larger Than Life is Just The Right Size
In my head, I'm having a fabulous life!!!! Now if I could just get my body to follow....
Susan
This morning I took two Excedrin and it helped with that feeling - so maybe just part of occipital neuralgia? I swear I have post-herpetic, occipital, bi-lateral atypical neuralgia!!! I am just one big ol’ mess of neuralgias!
Sue-
I have felt the way you do many times. Your post really struck a cord with me. I was like you, out-going, independent, had a great job, etc... Having my life turned upside-down has been hard and at times intolerable. Laying on my couch and watching daytime television is not my idea of a life. I used to work for a conservation/education program that worked on boater compliance & education with regards to guidelines and laws related to whale-watching (killer whales/orcas). I worked on a boat several days a week and was around whales all day long. I managed a database, attended conferences, etc... This was my dream job- what I went to university for.
However, I have found that remembering my life is different not over helps. I just have to find a new niche which takes my pain into account and brings me happiness. I am still involved in my old job. Just not to the level i want. I try to volunteer 3 hours a week. I make social engagements when I can, and am fortunate to have friends who come to me when I can't get out of my house. Have a fantastic husband, too. When I am grateful for those things my life seems more full.
So sorry you're having such a hard time with meds. You can always switch meds. Instead of Xanax, you might try Klonopin. Less side effects, longer lasting. I have no big ups or downs. Lorazepam was too much for me so I switched. I wish you the best of luck. Our lives are not over, having a nervous breakdown sometimes is okay, and you're still the same person on the inside even if not the outside. Still wonderful, out-going, and beautiful. Take care. Johanna
What a wonderful message, thanks so much. Seems like we were in the same line of work (I'm retired), was a Park Ranger for 30 years (hubby too). LOVED IT! Wish I could volunteer here giving tours but I can't read very much or take much light, am going to try getting out more when it gets warmer. I'm going to try taking Gabapentin again in a a lower dose along with lots of milk and a low acid diet. Seems like everything goes at once - my back, knees, eyes, cheeks and stomach all hurt. The wind and cold just kill me. BUT - I am so grateful every day to be alive!!! Life is beautiful, even if I can't see all the colors. Love, Susan
Johanna Smith said:
Sue-
I have felt the way you do many times. Your post really struck a cord with me. I was like you, out-going, independent, had a great job, etc... Having my life turned upside-down has been hard and at times intolerable. Laying on my couch and watching daytime television is not my idea of a life. I used to work for a conservation/education program that worked on boater compliance & education with regards to guidelines and laws related to whale-watching (killer whales/orcas). I worked on a boat several days a week and was around whales all day long. I managed a database, attended conferences, etc... This was my dream job- what I went to university for.
However, I have found that remembering my life is different not over helps. I just have to find a new niche which takes my pain into account and brings me happiness. I am still involved in my old job. Just not to the level i want. I try to volunteer 3 hours a week. I make social engagements when I can, and am fortunate to have friends who come to me when I can't get out of my house. Have a fantastic husband, too. When I am grateful for those things my life seems more full.
So sorry you're having such a hard time with meds. You can always switch meds. Instead of Xanax, you might try Klonopin. Less side effects, longer lasting. I have no big ups or downs. Lorazepam was too much for me so I switched. I wish you the best of luck. Our lives are not over, having a nervous breakdown sometimes is okay, and you're still the same person on the inside even if not the outside. Still wonderful, out-going, and beautiful. Take care. Johanna
Sue-
Thanks for the kind words. Park Ranger, Wow! I would've loved to have that job, too. I have a B.A. in Natural Resource Managment and working with the park system would've been a great career had I not stumbled into the conservation job working with killer whales.
I realized after reading my response to you and your response to me that all of those words are where my mind should focus. Things like, have hope, don't give up. Ironic, that writing those words to someone else later causes reflection upon one's own situation. I have had too many nervous breakdowns as of late and I needed to read what you wrote.
I hope the Gabapentin works out for you. I really stuggled with it, too. I had the "tireds" and felt off. It took sometime, but I adjusted as best as possible. I take Lamotrigene right now and so far no side effects. It's working better than Gabapentin & Trileptal at the moment, probably because I had a hard time, like you, tolerating the side effects. I am also on a good combo of meds right now that seem to be doing the trick (Lamictal (lamotrigene), trazodone, klonopin, celexa, MS contin and percocet every once in a while). Quite a laundry list. I'm 33 years old and have quit telling people I take that many meds as the common response is "you're too young to take all of that." I chuckle to myself and know that without them I wouldn't be functional at all.
Thanks for sharing and I wish you the best. I am always thankful for this website as everyone is so kind and it makes me feel less "crazy." Reading your post gave me comfort that i am not alone as many people are like us- not crazy, just trying to contemplate our next move with pain in our lives. Take care. Johanna
Sue Richey said:
What a wonderful message, thanks so much. Seems like we were in the same line of work (I'm retired), was a Park Ranger for 30 years (hubby too). LOVED IT! Wish I could volunteer here giving tours but I can't read very much or take much light, am going to try getting out more when it gets warmer. I'm going to try taking Gabapentin again in a a lower dose along with lots of milk and a low acid diet. Seems like everything goes at once - my back, knees, eyes, cheeks and stomach all hurt. The wind and cold just kill me. BUT - I am so grateful every day to be alive!!! Life is beautiful, even if I can't see all the colors. Love, Susan
Johanna Smith said:Sue-
I have felt the way you do many times. Your post really struck a cord with me. I was like you, out-going, independent, had a great job, etc... Having my life turned upside-down has been hard and at times intolerable. Laying on my couch and watching daytime television is not my idea of a life. I used to work for a conservation/education program that worked on boater compliance & education with regards to guidelines and laws related to whale-watching (killer whales/orcas). I worked on a boat several days a week and was around whales all day long. I managed a database, attended conferences, etc... This was my dream job- what I went to university for.
However, I have found that remembering my life is different not over helps. I just have to find a new niche which takes my pain into account and brings me happiness. I am still involved in my old job. Just not to the level i want. I try to volunteer 3 hours a week. I make social engagements when I can, and am fortunate to have friends who come to me when I can't get out of my house. Have a fantastic husband, too. When I am grateful for those things my life seems more full.
So sorry you're having such a hard time with meds. You can always switch meds. Instead of Xanax, you might try Klonopin. Less side effects, longer lasting. I have no big ups or downs. Lorazepam was too much for me so I switched. I wish you the best of luck. Our lives are not over, having a nervous breakdown sometimes is okay, and you're still the same person on the inside even if not the outside. Still wonderful, out-going, and beautiful. Take care. Johanna
Thank you so much for the encouragement. I stopped the Xanax when I upped the Gabapentin to 900 mg (probably a few days before, I think?). I am discouraged today as I cut back to 600 yesterday because the 900, while helping my eyes a little, made me unstable on my meet, and turned me into a zombie. I hated the way I felt!! Maybe I just need to be on 900 longer…At 600 today I have more eye pain. SO - the ultimate question - be a zombine at 900 with less pain, or have more pain at 600. I wish you well, what kind of TN do you have? I am a Christian and pray all the time for healing - but I know I must control my medications and what I do also! Sometimes I am so at the end of my rope all I can do is pray. Best to you, keep in touch, you have so many friends here!
I decided to go for 750 today to see if that helps, if it does I can get 800 mg pills from my doctor so I only have to take pills 4/day. I notice it burns my tongue a little - acid (I put it under my tongue). I noticed today I started feeling really crummy when I hadn't taken any pill for about 3 hours. I'm supposed to go on a trip next week (first in one year) so I am desperate to keep the bad pain away. I can't be on the computer too much, will be back in touch about medications. Thanks for your help. HIS EYE IS ON THE SPARROW!!!
Donna M. Freeman said:
Sue...
I am in the same boat..more eye pain etc on 600mg. In time your body will adjust most say. But I am sensitive to medications.. But..I just wrote my thoughts on my discussion on CNS meds and narcotics. It is long but worth the read...Let me know what you think..have to run an errand and will check back later...Have a great 4th ! I am on regular Facebook as Donna M Freeman as there are many. I have tons of Christian thoughts and scripture to encourage. Many writers are there with Lymes etc..many chronic pain issues. Check both out if you like...as friends and will check later..I sometimes take my gel cold neck collar ( not ice) and wrap it around my face and eyes for relief..It has a little weight for accupressure effect..(instead of my thumb...lol )It helps! Enjoy your day...D