Off the charts this morning. Tried all my positive thinking. I usually try to fake it till I make it... But that was so not getting me past the bed room today. Changed the stim. twicwe took my meds and just lied still with th pressure if a soft cloth pressing and pressing into my cheek, lip nostril, eye socket and forehead. You guys have been there. I know because I have read your post. Well I feel very blessed. It was only a 5 hr attack and I am at my desk now, pain free. I know towards the late afternoon it will start again. But I have had attacks for 17-24 hours non stop. So I do live in the joy when I get short ones. For sure wiped out because it takes a lot out of your whole system just to endure that kind of pain.Well I should stop being so morbid and self centered. I hope all out there are getting periods of relief today.. Go in peace
I know how you feel. My TN decided to shoot through the roof and wouldn’t respond to my medication anymore. I was counting the days until my MVD.
You are NOT self centered. I am often hard on myself too and I forget to be as kind to myself as I would to a friend that was suffering from TN. I'm glad you are feeling better now. You are strong and you are not alone. -Laura
When I read this I felt like you were talking about me.
My meds, Tegretol is maxed at 400 mg every 12 hours so they piggy back Lyrica 150 mg every 12 hours. I have MS as well as TN so I am taking Gilenya .5 mg daily for that. No more shots. I have had 2 surgeries, I have had the Gama Knife and I had a Glycerol Injection. I was in really bad shape when I went in and got the surgeries. I got them both on the same day and they both sucked. But they were totally worth it. I will do it again if needed. Now my meds are keeping the pain almost manageable and I smoke medical which keeps the pain, well I can ignore it. You have to get the right kind. You are totally not being self-centered! Many of us come here just to get it off of our chest and be able to be around people who know what we are talking about. If you haven’t felt the shocks or the cold jabs or the so many types of pain we have they can’t even imagine the amount of pain we experience. So vent, we all need a place to do it.
I wish you the best and I wish you many pain free days ahead.
Hey ebyrt that certainly is a crapstorm to say the least! To add MS to this hell on earth! (Wow someone is not having a good day!!) sorry! Is your MS in remission with flair ups? I would imagine 2 diseases that feed off stress must play havoc with each other.And yes that is for sure rhetorical. It's funny you talk about medical pot. My very conservative gyn who I have for 24 years has recommended pot for the brain and told me to get rid of all of the opiates since they do not touch me anyway. My son who is also a bit of a conservative has research this disaese for years. He is an extremely intelligent engineer working for military engines. He would give anything not to see that look come over my face. I tell him he's nuts. Did it once when I was 19..spent 3 hours of total paranoia. Both doctor and son say that a part of the brain that is damaged responds to 3 letters I cannot remember. Refuse to smoke it, he said he would put it in brownies....ok..here is the prob..spoke with pain management. They know me well, since I had cancer 15 years ago. They know that I will not take anything that will impair me. I hate a feeling of being high. So I can be honest with them. I asked should I try? They said that b/c they do monthly urines on all, if pot comes up, it is against the law in NY. So should I risk getting thrown out of a program where all know me so well and really take care of the real person? They said Eva, we have to report it once that nurse dose the dipstick. Good Lord can I go on or what!! Any one face this situation? God's blessings on us all
I’m have been doing really well up until now. The GK had really helped but numbness has started on the right side of my face, forehead, and eye. My teeth and nose pain is getting worse also it is so frustrating. I’m so glad I found this forum for support. My gmail is really tired of hearing about my pain.
That made me laugh! Thanks, I needed that. My MS is in remission with flare ups every now and then. Once my divorce is finalized (wife wanted out) my stress should go down a bit. I am out on perm disability because the MS has taken my ability to do my job. So I don’t have to worry about the pee tests. All I know is I have had 2 surgeries and I take a bunch of meds the doctor has prescribed. When the Pain hits, it hits hard and it usually hurts when I smoke it but after 3 or 4 hits the pain sometimes it’s totally gone.
So glad I found a friend and made him laugh! Because if we can't laugh our way through some of this....we will never make it. Trust me ..your talking to someone that planned her own funeral...(in my mind of course) But it just seemed so right until I started voicing little hints to my husband and boys and saw the horror on their faces. What the mind can do! Of course I wanted it assisted since I would never be selfish enough to leave these loving people behind. I really thought that they could see that the kindest thing for me was to let me go. Well Prozac took care of that. Not great ...but no longer planning funerals! Last night they had a dinner party for my b-day and the pot thing came up. I had just read your blog so I shared and I think I am going to give it a try. I'm married 40 years to an Indian, so there are more doctors in my family that one can imagine! I don't think getting medicinal will be a problem. As a nurse I would be petrified to smoke street stuff. Hang in there Eby...You sound like nothing is going to bring you down.
Well I am in the midst of a divorce. She couldn’t take it I guess. There are so many excuses that are well just excuses. I have 3 boys and a daughter that is the youngest. We were married for 16 years and she is part Indian and I’m not sure what tribe. I never planned my funeral just my suicide, and I planned everything down to the time of day so I wouldn’t hurt anyone. But my kids are everything to me so I put it on the back burner for now. I think about it and I look at my kids, even if it’s just in my mind. The pain has just become part of my life, and I just have to keep going. I sometimes think when the pain is gone, may be it won’t come back. Hasn’t worked yet… Wait! You have been married for 40 years?!?! How did you do it?! That is awesome!
Oh for me my pain is in my jaw and sometimes other parts of the right side of my face. I smoke Sativa because it mellows out the nerves in my face. Just make sure you get Top Shelf because you don't want any of that street crap. It gives me a head ache.
Hey Eby...Sorry to hear that u are going through a divorce in the midst of all of your horrifying health issues. Got to be stressful. Even if the end is inevitable, it always come with pain. I wish u well my new friend and will try to become another person in your life that u can dump on. I read the rules when I got on and they seem to be against profanity...to bad because dropping a big ole F-bomb here and there when needed sure helps me!! So glad that u seem devoted to your kids. Somehow they just make it all bearable. So you smile today and I will continue to debate with my son...should/or should not mama bear smoke pot? We really should all write a book. A page from all of us. People will laugh....till they cry...eva