Migraine

It's been a rough few days. I made a post some weeks ago about some muscle spasms I was experiencing. I checked with my neuro and he flat out told me he had no idea what they were or why I was having them. I had a few good days immediately after that, so I thought maybe it had just been stress and it was gone.

But then I got another Migraine and it came back, worse than before. I stutter and slur my words a little more than half the time, my movements are jerky and uncoordinated, and all the spasms in my face, neck and arms are leaving me sore by the end of the day.

Today was the worst. If I take a really deep breath and close my eyes and speak very slowly, I can speak in short sentences normally. But otherwise it's just awful. I had called my neuro yesterday and he said he still didn't know what it was, except that it wasn't the zonisamide he'd given me on my last visit. Of course it wasn't! I was having these problems before the visit.

I tried calling my PCP because it's gotten to a point where I am a bit frightened. I did some research on the drugs I take, and am wondering if there may be a link with the nortriptyline. My PCP refused to speak with me, and his nurse would only say I should call my neuro.

So now I'm crying and twitching, not a great combo, and just feeling...well, like neither of my doctors really care. I am unemployed, and I have no money, or I'd drop them like hot potatoes after today. I am so frustrated! I just needed to vent to people who could understand.

Take care, Hanako. I'm so sorry for what you are going through. We are here for you.

Mega-sized for you!

I'm not surprised you feel like neither of your doctors care. Your neuro doesn't seem to want to put forth any effort in trying to figure it out. Your PCP isn't giving you the time of day. I don't blame you for wanting to drop both of them and start over. That's probably a good instinct.

I know all about dealing with severe muscle spasms without them being addressed. It's no fun at all. It's exasperating, and frustrating, and it hurts, particularly when the docs don't seem to care. I'm still working on fallout from severe muscle spasms of several years ago. I understand exactly what it's like. My heart is with you.

Since neither doctor is being helpful, alternating pass the buck and ignore, and you wonder about a link to the nortriptyline, you might try calling and talking to your pharmacist. Nortriptyline's been around a long time, and I'm sure your pharmacist has heard all kinds of reported side effects. He or she ought to at least be able to give you an idea if it might be the culprit, or if it's barking up the wrong tree.

quote:

Originally posted by Hanako:

I tried calling my PCP because it's gotten to a point where I am a bit frightened. I did some research on the drugs I take, and am wondering if there may be a link with the nortriptyline. My PCP refused to speak with me, and his nurse would only say I should call my neuro.

So now I'm crying and twitching, not a great combo, and just feeling...well, like neither of my doctors really care. I am unemployed, and I have no money, or I'd drop them like hot potatoes after today.

Hey there,

How are you holding up? What did the pharm say? Did you have these spasms before you started nortriptyline? Do you have an Urgent care you could go to in the morning and get another doctor to look at you? It sounds like it is time to lose all those doctors and find ones who give a hoot. Boy are they making me mad on Easter Sunday evening.....

Let me know how you are, ok?

I'm just poppin' by to check on you, too, Hanako! And add some more hugs to top off your pile.

Hey Nancy, thank you so much for checking in on me! The pharmacy says it could be the nortriptyline, or it might not be, and if I'm unsure I should stop taking it. The pharmacist didn't know if I needed to taper off or could just stop altogether.

I decided to just stop taking it, and called my neuro first thing this morning. I had to leave a voicemail, though, and even though I called back a few times no one ever returned my call.

The good part is that even though I hardly slept because of it last night, it wasn't so bad today. So maybe not taking the nortriptyline helped? Just have to keep trying the neuro I guess. If it gets really bad again, I'll get a ride into an urgent care place, though I have no idea how I'd pay for that. I'll keep you guys posted!

quote:

Originally posted by Nancy Bonk:
Hey there,

How are you holding up? What did the pharm say? Did you have these spasms before you started nortriptyline? Do you have an Urgent care you could go to in the morning and get another doctor to look at you? It sounds like it is time to lose all those doctors and find ones who give a hoot. Boy are they making me mad on Easter Sunday evening.....

Let me know how you are, ok?

Thanks for the hugs Dragon!

I'm glad someone else has experienced something similar; it makes it less scary.

My pharmacist wasn't horribly helpful, but at least he answered the phone and tried, which is more than I can say for my PCP or neuro! He basically told me to trust my intuition until I can talk to my neuro, so I stopped taking the nortriptyline. I left a few voicemails for my neuro today, but he never called back.

It wasn't as bad today, though, so maybe it will just go away? I'll keep you guys posted. Thanks again, having the support means everything!

quote:

Originally posted by dragondroolHOST:
Mega-sized for you!

I'm not surprised you feel like neither of your doctors care. Your neuro doesn't seem to want to put forth any effort in trying to figure it out. Your PCP isn't giving you the time of day. I don't blame you for wanting to drop both of them and start over. That's probably a good instinct.

I know all about dealing with severe muscle spasms without them being addressed. It's no fun at all. It's exasperating, and frustrating, and it hurts, particularly when the docs don't seem to care. I'm still working on fallout from severe muscle spasms of several years ago. I understand exactly what it's like. My heart is with you.

Since neither doctor is being helpful, alternating pass the buck and ignore, and you wonder about a link to the nortriptyline, you might try calling and talking to your pharmacist. Nortriptyline's been around a long time, and I'm sure your pharmacist has heard all kinds of reported side effects. He or she ought to at least be able to give you an idea if it might be the culprit, or if it's barking up the wrong tree.

quote:

Originally posted by Hanako:

I tried calling my PCP because it's gotten to a point where I am a bit frightened. I did some research on the drugs I take, and am wondering if there may be a link with the nortriptyline. My PCP refused to speak with me, and his nurse would only say I should call my neuro.

So now I'm crying and twitching, not a great combo, and just feeling...well, like neither of my doctors really care. I am unemployed, and I have no money, or I'd drop them like hot potatoes after today.

Thank you nutcracker~ I really appreciate having a supportive place to turn to!

quote:

Originally posted by nutcracker:
Take care, Hanako. I'm so sorry for what you are going through. We are here for you.

Update:

Still haven't been able to talk to a human being about what I'm going through, but my neuro did call something in to the pharmacy. The pharmacist says it's ok to take with my other meds, but I can't get in touch with my neuro to find out if this is something that is a permanent change or just until the spasms go away or what.

It's called clonazapam. I'm supposed to take 1 mg at bedtime. Have any of you had any experience with this drug? The spasms aren't so bad today, like yesterday, but the migraine is worse. Trade-off, I guess. Trying to take my own advice and hang in there.

First off, more smooshes. We do have our priorities, after all.

I've never taken clonazapam,so I can't offer any experience or pointers there. I know it's a benzodiazepine, and that sometimes it's used off-label for it's muscle relaxant properties. I have taken one of the other benzodiazepines, temazepam, before, as a short-term sleep aid when I was first hyperthyroid and suffering from severe insomnia. I don't remember much about it, but I don't recall any side effects. It did help me sleep, but the doctor said it wasn't good to take for more than ten days or so, due to the addiction potential on it.

First of all, Teri Robert has a lovely phrase that comes to mind... "Fire his sorry butt!" I can understand it is difficult w/o insurance, but I think you should look into finding another neurologist. I just don't think he can or is interested in helping you...

quote:

Originally posted by Hanako: It's called clonazapam. I'm supposed to take 1 mg at bedtime. Have any of you had any experience with this drug? The spasms aren't so bad today, like yesterday, but the migraine is worse. Trade-off, I guess. Trying to take my own advice and hang in there.

I'm on 0.5mg of clonazapam at bedtime for anxiety. My last neuro put me on it b/c I had difficulty falling asleep because my mind would race and lack of sleep is a huge migriane trigger for me.

You are on a really low dose, so unless you tend to be super sensitive to meds you probably won't get side effects from it. I'm pretty sensitive, and I don't have any side effects from the clonazapam.

I hope one of your docs at least trys to figure out what's going on. Good luck and keep us posted.
Kelly

Yay smooshes! I took my first dose last night and while I didn't notice any side effects, I did sleep like a rock and I haven't had any real spasms yet today. Some minor stuff but nothing like before.

I'll definitely try to get in touch with the neuro to see if he intends for me to take this as a matter of course or just when spasms happen. It'd be great if these would go away, so I could deal more with the constant mind-numbing head pain! lol One thing at a time is definitely easiest.

Hanako

Yeah, I know it's what I need to do, it's just so scary! Scarier to be in pain all the time with no help, though, so I'll get it done.

I took a dose of the clonazepam last night and it seemed to help me sleep more deeply, but I didn't notice any negative side-effects, and seeing your comment just reinforces my instinct that it's probably not going to have any for me. The spasms are much better today, almost nonexistent, so I guess it's helpful! Thanks for the support, and the information. :hugs:

Hanako

quote:

Originally posted by Katinthecorner:
First of all, Teri Robert has a lovely phrase that comes to mind... "Fire his sorry butt!" I can understand it is difficult w/o insurance, but I think you should look into finding another neurologist. I just don't think he can or is interested in helping you...

quote:

Originally posted by Hanako: It's called clonazapam. I'm supposed to take 1 mg at bedtime. Have any of you had any experience with this drug? The spasms aren't so bad today, like yesterday, but the migraine is worse. Trade-off, I guess. Trying to take my own advice and hang in there.

I'm on 0.5mg of clonazapam at bedtime for anxiety. My last neuro put me on it b/c I had difficulty falling asleep because my mind would race and lack of sleep is a huge migriane trigger for me.

You are on a really low dose, so unless you tend to be super sensitive to meds you probably won't get side effects from it. I'm pretty sensitive, and I don't have any side effects from the clonazapam.

I hope one of your docs at least trys to figure out what's going on. Good luck and keep us posted.
Kelly

And while you are on a "fire his sorry butt" crusade, fire that pharmacist too. What does he mean he doesn't know if you have to taper off that med? Isn't that his job????

I've considered it before. My doctor's office once told me to ask the pharmacist to find out if the herbal supplements I wanted to take would be ok with my current prescription meds "because they know that stuff better." I'm wondering if maybe the docs and pharmacists in my region are just uniformly incompetent?

quote:

Originally posted by Nancy Bonk:
And while you are on a "fire his sorry butt" crusade, fire that pharmacist too. What does he mean he doesn't know if you have to taper off that med? Isn't that his job????