Really Mean and still Tired

[Mynamegoeshere1]

I had my first infusion a week ago and I can still only stay awake for a max of 4 hours and then sleep for about the same, when I can. I take ambien at night and eventually I can fall asleep with 1.5-2 tablets and sleep through the night. I am sleeping more than I can stay awake.

I am also extremely moody. Really mean and snappy at people. It is really bothering me as I just really noticed it, but I asked my husband and he said that I have been snapping at him a lot. This isn't like me and the only thing different is the Tysabri. I don't see this as any side effect anywhere! Have any of you ever had this?

[LL60]

mynamegoeshere -

How are you doing? Still tired? Still "mean." It takes awhile for your body to adjust to any med, and from reading the boards here, everyone seems to have some different experiences with Tysabri. Being tired is a big side effect that a lot of people have - along with many who get energy from their infusions. I am pretty wiped out the day of, then get some energy a day or two later. Not the huge change anymore - been over 3 years - but sometimes I notice a few days of enough energy to get things done. And lots of times I make the mistake of overdoing it when I do get some energy - boy, then I pay for that.

About the mood change. I haven't had that and don't remember reading about anyones same experience. But it's your body and you will react how you you react. That is a side effect of Ambien I know. I too take that for sleep and read everything they give me about it because I hate that I have been on it long term. But I actually can stay awake all night without it and that's not good. I sleep about 5 hours with it, once in a while longer.

Could it be that you are worried about being on Tysabri?

Go outside if possible this weekend and do something relaxing and fun. Let us know how you are doing.

[Mynamegoeshere1]

Mean

I am pretty sure the being mean is from being tired all of the time. The Tysabri rep said this is a rare side effect for the fatigue to last this long as it usually goes away and that my neuro needs to give me something to counteract this. I have called my Neuro twice with a promise of a call back and nothing. I am starting to get angry (but am I really angry, or just angry because I am so tired?) I have to think about that all of the time now and it sucks. I went to sleep at about 3am and woke up at noon today. By 2pm, I was wiped out and fell asleep. I only woke up because my husband called me several times at 5 to wake me up and make sure I am ready when he gets home from work. I am still exhausted though. I just want to sleep. If I could, I would stay in bed and sleep all day everyday! This only started after the Tysabri so I only assumed it was that. I went to my PCP and she has a strong suspicion too and so did my drug rep. I sure hope my neuro can do something to counteract these because Ty is my last chance for right now.

[Seasha]

Ahhh, sweetie~~ I wish we had a magic bullet for you! I ache for you and all you're going thru. You know, anyone can get cranky with not enough or too much sleep. Please try, try to be patient and if you need to sleep, well - sleep!

I don't know much about ty, so I can't help you with that. I just hope the doctor calls you back soon! Tell him, Seasha's starting to get mad too!!!

Sending you hugs and make sure you are eating well and staying hydrated - OK? And let us know how it's going in the days to come.

[Mynamegoeshere1]

Thank you

My Neuro never called back. I gave him since Wednesday. My PCP did some blood work and I asked her to check my vitamin levels to make sure my b12 was ok since it was off in the past. When her nurse calls back with the results (hopefully Monday or Tuesday), I am going to have her call my Neuro and maybe then he will take me seriously. I just can't live like this. If this is how Ty will make me feel, I would rather just be without any MS medications. I have had either allergic reactions (copaxone) or rapid decline on Beta so they don't think the other interferons are safe. Im just so lost. I can't believe that my life has changed so drastically in a little less than a year. I am starting to give up hope in my MS fight. I am on antidepressants and I am not depressed, just being a realist that nothing is working for me and I am just going to decline with or without medicine, but might as well decline while feeling better than this and not wanting to bite off other peoples heads and sleeping the day away! Owell, my rant is over. Thank you guys for listening.

[Mynamegoeshere1]

Finally

I finally heard back from the PA at my doctors office after I sent a very lengthy email to my Dr. detailing everything to him. She said she was going to call in something similiar to Ritalin for me to help me stay awake, but surprise, surprise.......she didn't! My husband even went by the pharmacy on the way home from work for me because I got an automated call saying I had a prescription ready and figured it had to be that one. It was one that was just ready for refill. I don't have anything to do this week besides for a couple of hours today and my husband bought me a 2 hour massage to hopefully help with the pain on Wednesday so she has a bit, but I told her I refuse to take my next Tysabri which is scheduled for Oct. 15th unless I am able to see if I can stay awake on something first.

[Cat Mom]

It's no wonder you're angry! What a lesson in frustration this whole rotten disease is. I don't take Tysabri but in any case taking something to make you feel better overall that causes you to feel worse, then needing other meds to counteract the bad side effects of that med, then not having support from the professionals who prescribe these meds.... I really feel for you.

My suggestion is to have a good old temper tantrum! Yes, like a 2 year old complete with stomping, fists punching pillows, ugly cry faces, the whole nine yards. It does take some energy so you should prepare for sleep after, but it really does help.

I do hope that your rx (if you ever get it) does something positive for you. I know that trying to put on a brave act for your family is also exhausting and trying to hold it all in and handle things yourself keeps the anger brewing just under the surface. A well scheduled tantrum allows a bit to escape before it builds up.
Jen

[moolk]

I have only had 4 infusions, but my first two left me soooo tired. I was yawning all of the time. I know now that I must sleep as soon as I get home from an infusion and really take it easy the next day. If I don't do this... I really seem to pay for it. I know that every one is different but this is what helps me.
I hope you find what works for you. Being tired and "mean" just bites.... I hate that feeling. Good luck to you and may you find some peace with this.

[Mynamegoeshere1]

Med

They called in some Straterra for me today. I guess it is something like Ritalin to stay awake? I am going to start it tomorrow and see if it helps. I also stopped taking my baclofen in the morning even though I have always taken baclofen morning and night, but that is not going to be an option for me. I will have to start taking at least some (if even a smaller dose) in the am. Here is to hoping this works.