Migraine Headaches Support Group

Hello, I have been suffering from migraines for over 30 years. Over the last 6 years they have become chronic. I did have a break from them while pregnant with my daughter who is now 4.5 yrs old. During an effort to conceive again I stopped preventatives, though have not had luck with them anyway, since I always end up with rare side effects. Over the past couple months my mood took such a nosedive that my neurologist convinced me to go on lexapro even though every antidepressant except for one caused my my migraines to get worse. (Cymbalta helped for several months but I had to stop it due to severe side effects.) The plan was to start lexapro then have the FDA approved botox. Iwith the hope both worked for my mood and migraines respectively. The Botox treatment was done 10 days ago. Two weeks after increased the lexapro which I agreed to continue despite it worsening my headaches and rendering my abortives useless, I started experiencing involuntary muscle movements, twitching, muscle cramps and rigidity, and tremors. My husband was out of town as usual, and I was afraid I wasnt going to be able to walk. After several dramatic and teardful phone calls, my neurologist called me from his vacation and agreed it was the lexapro which I stopped 3 days ago. I have been taking benadyl and taking klonopin .25mg for tremors. I was told to go to the ER for IV Cogentin if no better. The lexapro withdrawal and the EPS sound similar. I thought I might be improving but now I'm not so sure. I tried to get hold of my neurologist earlier today but it has been hours with no call back. I'm just so sick of this battle, my husband blames me and keeps threatening divorce. Has anyone had such extreme side effects? I am so overwhelmed and tired. It's too much at once but I don't want an unnecessary IV. I feel like I'm going to lose everything if I don't improve, and I don't know where to turn.

I am sorry that you've had to suffer so much and that your husband is not being understanding. You are not alone, I have had lots of yucky side effects from medications for migraines, anxiety and depression. Everything from tremmors, to hair falling out, to severe weight loss, rashes and psychotic episodes. Sometimes the side effects are worse than what they are treating. Most drugs that act on the brain, also bind to fat receptors in the body, so just because you have been off the drug, doesn't mean that it is out of your system (this is why you are on benadryll). I would encourage you to go to the ER if you feel like you need it. You know your body better than anyone.

I hope you feel better. You're in my prayers

Thank you for your support. I'm sorry you have suffered so much, it's hard being in a body that resists medications that really help so many people. I'm going to keep fighting, and keep my chin up and smile as much as I can. I thiink my husband is finally aware of the amount of distress I am in, he told me to go to bed and try not to talk bc of my twitching mouth and gave me some warm hugs. It's a comfort to know I'm not alone, thank you again.

You are most certainly not alone. I am glad you are feeling a little better emotionally, hopefully your body will follow suit. Rest up and feel better! Hopefully tomorrow is an improvement on today! You're in my prayers.

- Jen

Hello Shell70,

I'm so sorry I didn't respond to your post sooner but I've been away most of the weekend.

First, welcome to the group. Its unfortunate you have a need to be here but this is a wonderfull support group.

I suffered side affects from the antisiezure med phenytoin and the nortriptyline which I was given for migraine block. Both were given at the same time so I'm not really sure which was more to blame. I think the phenytoin because it was first given at way to high a dose for me. I was loosing muscle mass and starting to twitch and shake. I had to really work at my legs not going out from under me at times. I have been off both for over a year now and I still don't think I'm fully back to normal as far as my strength coming back. Also caused me to have very bad brain fog, couldn't remember much at times.

I'm so glad you are feeling a little more possative. Hold on, you are not alone. We are here to offer all the help and support we can. Take Care!

Kardie