How do you just accept the fact that you might never go into remission again and have to be on medicine forever ? I am only 23 and I’m losing hope every day… I hate the medicine and I just want to be normal again. I can’t handle the pain when I don’t have medicine and the Neurontin and baclofen I’m taking makes me feel crazy and sick. I live in a poor town in Ohio and I feel like no one knows what my disease is … I am struggling so bad and all I have is my fiancé. I thank god for him but I still can’t help but feel alone. I don’t want this forever… is this my life now ? I can’t accept it. All I do is cry and lay in bed… please tell me how to cope? How do you stop your depression ? What do I do? I feel like I’ll be at a dead end with doctors … I don’t understand fully how my insurance works… I’m in such a rut. Please help…
It is tough road we are on. The one thing that helps me is thinking about my friends little sister that has had rheumatoid arthritis all her life and has the best attitude and sense of humor. I also think about all the children with terminal diseases that never will have a chance at a full life. I know this might be hard for you to think this way since you are so young. My heart goes out to you and I hope you can find some way to cope with this monster. It sounds like you have a good fiance. I also try to have a positive attitude which can be very hard at times. You now are not alone, we are here for you and do know and understand what you are going through. Hang in there.
Thank you so much Scott. I’m having a very tough time… it might be due to my medicine making me over emotional and already being a ball of anxiety… but I just can’t shake this feeling of dread. I wake up every day praying the pain will just stop. This is the longest I’ve had a flare and not went into remission… I’m so scared this is it for me… that I’ll never be lucky enough to have another pain free period. It just makes me so sad and hopeless. I feel like life is over.
I also take Gabapentin and bachlofen and it does make me more emotional. I have been told that the body can start to dull the pain some and I believe it has for me. Fighting this is not the easiest thing you will do but I know you can find a way to fight it and it sound like your fiance is supportive and he can help you find the way. Research all you can, you are your best advocate and you have lots of members here that support you and are in their prayers. You can also private message me and others if you want to also.
Thank you Scott, everyone here is very kind and helpful. I honestly don’t know what I would’ve done if I hadn’t found this wonderful site. What do you mean, the body starts to dull the pain? Did you ever get used to the Baclofen and Gabapentin ? Thank you so much for the advice.
They said that the body can help fight to make the pain less while trying
to heal itself. I have never completely gotten used to all the side effects
of the gaba and baclofen. I was up to 3600mg if gaba and was basically a
zombie. I am now at 900 - 1200 mg and have trouble with short term memory
loss and comprehension when reading something new. I do need to rest more
but not if that is from the meds or lack of sleep at night from zaps of
pain interrupting sleep.
I’m up to 1200-1800 on gaba and 30 mg a day on baclofen. I still get shocks but they aren’t constant like they were before. I hope my body tries to heal itself like you’re saying. I hope I get to see another remission. Thank you Scott. You are such a kind soul. I wish you the best and hope you have many pain free days ahead.
Thanks and keep us informed, we are pulling for you!!
The gaba and baclofen WILL help your body heal it self. Once those over active nerves FINALLY get the message you just aren’t going to take it anymore, they will start to behave… Hang in there its a long road but still the only way to travel it, is one step at a time. (yeah kind of syrupy not my style but true none the less)
Thank you so much. I needed to hear that today. You guys are just so helpful. I’m so thankful I am able to be a part of this wonderful community.
Thank you for clarifying it better than i could:)
There are many different medications and combinations of medications that you have not tried that could be even more helpful. Also there are many procedures/surgeries that can potentially make a huge difference. Also you have gone into remission before and there is no reason you wont go into remission again. And finally, you have not been on your medication long enough to get the full benefits.
I guess what im saying is that there is hope! this is not how you will feel forever, this is one of those low points that you will bounce out of. Your mind is just making you feel worse by causing you anxiety and telling you that things will be like this forever! i think managing your anxiety/emotions is important. When anxiety is worst everything seems bleak!
try to distract yourself ! when im in pain i cant read so i just watch funny youtube clips in between the pain attacks
Hang in there! better days are ahead.
Hi there, @Cheyane93.
I am new to this group, so forgive me if what i say is repeating something you’ve already heard or already know.
I’ve had severe TN since 2002 - when I was 26. Mine started right after I was dx’ed with MS. I’m 41 now. My pain ebbs and flows throughout the day, so it’s not a full constant for me - which gives me a small break. There ARE other meds besides gaba/neurontin that help TN - that I’ve tried taking over the years. There’s Tegretol (which can make you feel as dumb as a box of rocks), Trileptal (which is the exact same molecular structure at Tegretol, but has one extra molecule of oxygen - which makes a HUGE difference in not feeling dumb and spacy), and Lyrica. Lyrica really helped with my pain, but can cause some unwanted side effects (please read their drug info). I’ve read many posts/conversations on this site already, but am not sure where different topics fall into place. A procedure that worked really well for me was Gamma Knife Surgery. I’ve had it done twice to help the right side of my face (I occasionally have bi-lateral facial nerve pain). It has caused the pain to subside and be less frequent. I still take Trileptal to manage the residual pain, but I take less now than I did before.
It’s not easy. I try not to think about the pain and the future. I just take it day by day. Some days are good, some days are bad. My bad days are fewer and fewer since the GKS, which allows me to volunteer for a great organization and get out of the house and make some friends. I live in Seattle with my boyfriend - my first year here was really difficult because I didn’t know many people and I couldn’t work due to my MS. I found a great neurologist and a great therapist, and they (and my boyfriend) helped me get through it. It was honestly one of my worst years, but I made it through because I tried to take it day by day. Venture out a bit more each day.
Acupuncture and a nerve block also helped with my pain. My first neuro tried so many different meds on me for the TN back in 2002 - and acupuncture was the first thing that touched my pain and helped it subside a bit. That was ages ago, before TN became more widely known as a possible symptom of MS.
Neuros didn’t necessarily know what meds to use to treat TN back then. I did a TON of online research in 2003 and discovered Tegretol + Trileptal. Tegretol was my TN first med. Topamax can work for some folks, though that can be used to treat headaches and migraines. GKS wasn’t approved for TN yet at that point, so I tried nerve blocks instead, which gave me a couple months of relief.
I hope you have a good pain management doc - that’s a big part of winning the pain battle. A solid therapist who understands TN has helped me too - focusing on either pain mgmt techniques and/or life outside of the pain does help.
I hope you can find some relief.
You just have to find what makes you feel alive. No matter
How bad the pain if there was somehting I had planned on doing I did it. Yes it is hard for others to understand but we have only one life to live and I vowed to myself that this wicked disease would not take it from me
you are right about TN being a symptom of MS .
When I had my first episode of TN ( 3 years ago )things went very, very slowly from getting weird feelings when touching a little spot in my face , to very painful .
The ENT doctor told me I might have TN and told me to go to a neurologist
That started a long road of MRI , spinal tap ect . and finally I got the diagnosis :
The MRI showed that the MS is causing my TN .
Does TN with MS get rapidly worse ? How is your MS ?
A couple of months ago I had my second episode of TN for which I’m still taking 500 mg tegetrol / day ( 200 - 300 ) .
I’m also very anxious about what to expect ?
Up to now the TN makes me much more nervous than the MS .
Probably taking things day by day is the best way to go . I’m also very glad to have found this group especially since my family totaly ignores the MS and the TN , which makes it even more difficult !
As far as just going on and doing the things that I planned to do when I’m having the attacks , that’s imposible for me because I would be embarrassed " showing " my reactions to this awfull pain . So it’s easier to just stay at home during those bad days .
So sorry for you. Its a long road. Seems like it never ends. Maybe you can a antidepressant for just a while to calm you down. I recommend as young as you are do not, I repeat, do not do Gamma Knife it will damage the nerve so badly that if you ever do an MVD you can end up with worse pain for life. Trust me. I know.
I know I have mentioned this before but if you could read the book Striking Back it would give you a whole bunch of info,organized in a helpful way-esp.if you are thinking about surgery.
Maybe you could see whether your local library could order in a copy from another branch for you?
Not sure if it available online-sometimes there are used copies of books pretty cheap.
If there is no trigeminal association active in your area I strongly suggest you get the book.
Hoping the antibiotics are working.
I second the opinion of not doing anything destructive so early. After the nerve is damaged, you have less choices.
The way I get through each day is pick 1 or 2 things I want to accomplish. After I do that thing, I reward myself with quiet me time, no interruptions, read a book, a bowl of ice cream, play a game, something I enjoy.
The other thing that helps me a lot is writing in my journal at least every other day. I don’t actually write, I type a word document and name it by the date. I write about how my pain is that day, how I feel, side effects of medicine, my plans, my opinions. This has been very useful, helping me keep the facts straight, and I can look back. As you know, medication affects our thinking and memory. It really helps me to keep my mind active/sidetracked, and temporarily not think about the pain. It is there, but these are my tricks to ignore it.
I can’t thank everyone enough for your kind words and helpful information. You all are amazing people. Thank you so much.
You must be a very strong person. I have had to cancel so many lunches, meetings, movie dates, etc. over the past 10 years that I lost count; but when I get a bad flare-up…I cannot even tolerate walking around my house or talking. I have to take my breakthrough meds and stay in bed until it subsides back to my normal constant amount of pain.