Have not posted in quite some time. I have had TN for 7 years, like so many had many teeth pulled on right side before diagnosis. MRI, clean. Started on 100mg Gabapentin, 3 times a day, have gradually had to increase over the years. Last year on 300mg, 3 times a day. About a month ago the attacks started again with a vengance. Always had some break through pain, but it was more controlled than not. Now it is so out of control and totally effecting my every hour. I am taking pills every 4 hours. My situation, no insurance. Long story, but my hubby (52) was hospitalized 2 1/2 years, he recently came home. He is in a wheelchair, had a leg amputated and on dialysis. I am his primary care taker. No family around much. So pain or not I have to keep on. Surgery is not an option, not only because I would have no one to help for recovery period, but like I said no insurance now. I feel trapped in my own body, I try never to get down, but the past few weeks has whooped me. I take my hubby to all his Dr appts and just want to scream can someone help me!! But screaming hurts, lol! I have spent countless hours reading and tried some homeopathic type things, also know can get worse as we grow older (I am 47) and that meds can stop working as well. I get my Gabapentin from a dear Dr that understands, but is in no way a TN Dr. So with no insurance and not being able to take anything that makes me drowsy, what now???? Perhaps venting as much as asking!
Not sure if you can get Topiramate, but I know that it really help me. I know that I do take other med like (oxy and perocet) but this help to control the pain. I just don't know if your Dr. could help you get the meds or if it is cheap. You could also try to call the mfg. Glenmark and see if they can help you in some way. I have had Gamma Knife in the back of my head and at my cheek and I have had MVD and nothing had help with the pain. It has been 8 years since they diagnosesed me. Good Luck with everything, sorry I don't get on-line very often so I won't get on again for a long time.
Look at the groups tab --- there is a topical relief group that puts in their comments on things you can put on the pain that are rx or over the counter..... Ask a pharmacist how much a tube of lidocaine cream is without insurance --
Reiki actually helped me at one time ---
Keep researching and asking!
We'll be here!
Hi Betsy
I take 900mg gabapentin x 4 and top up my afternoon portion with tramadol which gets me through, especially if I need to be out of the house.
It sounds to me that you are in great need of back-up. Your load is too heavy for someone in your situation. I encourage you to ask your “dear” doctor to help you find some kind of social service or church organization or whatever (not knowing what country/ state/ province, etc) to help with your husband and give you some respite. It is not only the medications we need but rest and someone at our back as well. One person cannot carry all the load.
I live in a very small community and have tried to keep to myself what was happening with my ATN/GPN/HFS partly because I didn’t have a clear diagnosis, partly because I am used to being the strong one, partly because I couldn’t “come out” trying to protect others. Recently a friend represented me at our community health fund board meeting and they came out hugely in support for me. I can’t believe how much this has meant to me and also how much better it has made me feel. There must be some kind of support for you out there as well. Sometimes we just don’t know where to look but someone else does. Please put it out there that you need support.
Peace and Happiness
Bellalarke
If your hubby has a social worker on his team - see what resources she has for you --- be honest and see what she/he can pull out of the community for you.
I am sorry for your pain.....I am new to this group - I have never been in a group for TN.....I was diagnosed 1 month ago - after being in pain for years. My dentist and oral surgeons (6 mouth operations) said it was in my head. My Neurologist has had me on several meds. - all gave me terrible side effects....the last - Tegretol - did not help the pain - he now has me on Baclofen does anyone know anything about this. He also had me on Lyrica - which made me swell up and my BP shoot up sky high....Thanks catwoman
Hi Betsy
How are you doing today? Saw your post the other day but felt so crappy myself I couldn't type. But today is a better day and just wanted to see how you are doing.
We are about the same age, taking about the same amount of meds, and with husbands who are not well. My hubby is doing better these days and is back to work but I know how hard it is when you are going threw something like that.
Money is tight in our house as I am not working now and do not qualify for any type of insurance or benefits. It is just one more thing to worry about. I am learning to ask for help from governments offices to my neighbour next door. Never had to do it before it is hard but I am running on fumes and just need help some days.
You are not alone, it is a hard journey having TN.
Hang in there
Jenny
Thank you to everyone who replied :) It is much tougher, Jenny, I know when your spouse is also not well. I am very glad your hubby is doing better and I understand how hard it is to ask for help when ya never had to in the past. Lol, I used to worry about money before all this, I had no clue how blessed I was back then, but then again still blessed in many ways. It is truly a day at a time, some days I succomb and just pout, others I say I refuse to let this stop me and do my best to carry on, but some attacks are just too much. It does help to be here and know we are not alone, wish none of us had this, but since we do support is good! ity party days I feel like we are the pitiful couple, too young to have all this going on, but I try to pick myself back up. My pets truly are a life saver for me, the days I don't want to get out of bed I look at those precious faces, all pumped up for a new day, inspires me to keep on! hubby has been through hell, he is also an inspiration and pretty understanding about the TN, tho I know he gets frustrated not knowing what to do to help. I hope today is better, I am going to go escape to the garden, pain or not, some sun and flowers also help. Betsy
Honeybumps said:
Hi Betsy
How are you doing today? Saw your post the other day but felt so crappy myself I couldn't type. But today is a better day and just wanted to see how you are doing.
We are about the same age, taking about the same amount of meds, and with husbands who are not well. My hubby is doing better these days and is back to work but I know how hard it is when you are going threw something like that.
Money is tight in our house as I am not working now and do not qualify for any type of insurance or benefits. It is just one more thing to worry about. I am learning to ask for help from governments offices to my neighbour next door. Never had to do it before it is hard but I am running on fumes and just need help some days.
You are not alone, it is a hard journey having TN.
Hang in there
Jenny