Today I had one of the worst episodes since this horrible disease took over my life. I knew it was coming as I have had what I call twinges for days now. Today’s horrific episode lasted about 40 minutes and I didn’t think it was going to end. I had no idea what to do. What if it doesn’t stop ever? I took 1200 mg of trileptal and gabapentin and laid on the floor and prayed to God it would stop. I am living in constant fear of the next attack. They seem to be coming more frequently. I’m scared to death it’s going to happen at work and I don’t know what I’ll do in that case. I feel like I’m losing my mind! I want my life back! I, sorry for this poor me post but I’m really losing it! Thank you all for being here.
It sounds as if you are having a bad day .
Listen - The What ifs , and the anxieties are not going to help you . Somehow you need to stop your mind from working on this and making things worse .
What happens - happens , don't worry about what you cannot do anything about .
As far as work goes - I have made my supervisors aware of the problem , I don't know what you do , but if you have to 'step away' to a quiet place for awhile - do it . I fight this at work sometimes and when it gets so bad- I do step away . I operate equipment that would be dangerous if I lose focus , so I have told the bosses that I know when it gets to the point I need to do the right thing and not endanger anyone or myself. I get these episodes that last 20-40 mins with a peak time of about 15-20 mins of pure hell.
I don't give up - I keep going after an episode , Yes it sucks and Yes it makes me hate that this is happening , but it won't beat me and destroy me. I have too much good in my life to let a little pain get in the way of this wonderful experience.
Yes, I am having a very bad day. This episode came one very bad day, as we also found out our dog has cancer that we can’t do anything about. Am I having a bit of a pity party for myself? I suppose I am. Normally I am more positive about life as I have so much to be thankful for and so much to keep going for. Today just sucked plain and simple. I am scared that episodes are getting closer together and I’m not sure where to go from here.
It sounds like you are a very strong person and I respect that very much. Thank you for for you r perspective.
Do you take the meds everyday?
Mayne I misunderstood your post because it teads like you take the meds only during an episode.
I am an attorney. I fight through each day and try not to worry. I try not to think of the day I am in court and an episode starts.
Have you discovered a trigger yet?
Yes, I take meds every day, but when I have an episode I will take more during it to try and stop it. If I take large doses on a daily basis I have a hard time functioning.
I do not envy your position as an attorney, I can't even imagine being in that position. I know people have it much worse then I do, and I try to remember that on a daily basis.
Many things seem to be triggers, eating, brushing teeth, talking, lying down.
I wish you good health Lisa!!
You should talk to your doc before trying this but see what he/she thinks.
I don’t believe taking that type of med during your pain works that way. Rather the idea is a slow buildup to carry you through. My doc has me taking the meds 3x’s a day. My largest dose is at 6:00 pm so that the side effexts are worse while I am sleeping. I take 1 pill in morning, two mid afternoon, three at 6. This was my docs idea and it seems to work well for me. The key is to prevent.
I am on gabapentin as I can’t tolerate tegretol.
Thank you for the wel wishes. I am blessed as I have some supportive colleagues who are ready to step in if need to be.
I don't know either that it actually helped stop the attack or if it just made me feel better that I was doing something. It was my evening dose, I just took it earlier then I normally would have. I have been just taking them morning and night but I met with my neuro today and we discussed taking them three times a day. We also added Baclofen. She discussed referring me to a surgeon to go over possible options there as well. Just not sure I am ready to go that route yet.
It's such a guessing game with what meds work and in conjunction with others. So, for now I will keep living in my night time fog and playing the med game!
Hi Monkey Mom, I know exactly how you feel, and your description of how you know the pain is coming is just right, I like you, am constantly waiting for the sheer unrelenting pain to return, and I am at the moment in the “twinges” stage, even when I have no pain, I am waiting for it to return, it always does…
I’ve been pain free for 2 wonderful months, I’ve enjoyed every minute, it reminded me or normal life, not only for me, but my very beautiful understanding husband, but now it looks like I’m on the “pain train” again… I am ssooooo tired, don’t know how much longer I can do this? I just want to close my eyes, and never open them again…
But that’s today, tomorrow will be different (hopefully) and so I keep going…
I apologise for the “poor me” too, great to speak to you all, I know I’ll find love and understanding here… Hugs to all x
Oh how I understand the twinges… My doctor looks at me strange. But it is like my nerve is slowly waking up, letting me know it is there, right before it leaps out of bed to jump on the rails of a crazy train.
"I having a bit of a pity party for myself? I suppose I am. Normally I am more positive about life as I have so much to be thankful for and so much to keep going for. Today just sucked plain and simple. I am scared that episodes are getting closer together and I'm not sure where to go from here.
It sounds like you are a very strong person and I respect that very much."
Thank You ! I guess a couple of days can change attitudes . Right now , I am nearly whipped , After a bad night of TN , I just need to vent. This bad storm in the Midwest has hit me hard with night pains,
The worst is .... My Mother has hit bottom and is dying , I have to remain strong - make arrangements - coordinate care while being beat up inside by emotions and TN attacks . Nothing has gone well this year for my family . A lost uncle - Fathers By-pass heart surgery -My aunt's double mastectomy- Now Mom hits bottom and I continue to suffer . My brother and sister are flying in today for support . I am a strong person , but today I am a train wreck .
What would normally be enough - is compounded by this damn disease . Thanks for listening.
VeteraninPain, I am so sorry about your mom. It’s okay to be a wreck right now. Doesn’t make you any less strong. Hugs from Oregon.
Hi Anne Marie, please don’t ever apologize for the so called poor me routine. We all have poor me days, as is evident in my post that started this feed. Days of pain suck for us beyond belief. The amazing thing about this site is that it reminds me that I’m not crazy and I’m not alone. Days when I’m pain I feel so alone, so I’m so grateful for all of you who listen and care even though we have never met. How long have you been suffering from this cursed disease? What do you take for meds? Wishing you a healthy day!
Lisa, do you see a general doctor or a neurologist?
Oh Veteran, I’m so very sorry to hear about your mother. You go right ahead and have a pity party all you want, and I’m happy to listen. This rotten disease makes every thing so much worse, we can’t just grieve the way “normal” people can. We have to balance pain with it. If you need to talk, you have a lot of great listeners here.
Sorry Anne Morris, for some reason I called you Anne Marie’s, lol.
Mm, i just came out of remission. My neuro retired while I was well. I am desperately searching for a new neuro who treats my condition in my area. My GP is trying to help but admits he knows very little about my condition.
I am so sorry things are so bad for you right now. That fear of "when will the pain come back" can suck any joy out of our pain-free times. Living with that hanging over your head is so draining, but you are doing the absolute right thing by talking about your fears.
I hope hope hope your pain is better soon, and you have some peace of mind.
Oh that stinks Lisa, finding a good neuro can be so frustrating. I feel like not many GP's know much about our condition. I guess we can't blame them, since it's such a difficult thing to understand. I hope you find a new one soon! Are there any support groups or anything in your area
Thanks Easy Beef, I appreciate your kind words. Today has been a good day luckily. I hope are having good days as well!!
There is a small support group over an hour away.