Migraine

I feel like I've been posting in this folder a lot lately, but I've had a rough couple of weeks (as most of you probably know). I fired my doctor a couple of weeks ago and got a referral to a new specialist, and during that time I've had a few bouts of worse-than-usual depression, severe pain and new (and frightening) migraine symptoms. Which is a lot for anyone to deal with.

Yesterday I woke up feeling ok, but that soon turned to worse-than-usual depression, followed by most of the day of severe pain, around the 8-9 range. It's rare that my pain stays high as long as it did yesterday, and even the ice packs barely touched it. I tried some GelStat Migraine, which took the pain down to a 6, but only for about 30 minutes or so. It was just a miserable day of pain, and I don't even know what triggered it.

To top that off, going to bed last night I started having some odd symptoms - slight shimmering to my vision, almost like an aura, but I've never had a visual aura. It was gone by the time I woke up. (I have this noted in my migraine diary and will be talking to my doctor about it.)

I also had a really frightening paralysis episode when I was falling asleep, like what I used to have almost nightly when I was taking gabapentin last fall. I woke up completely unable to move, which was terrifying enough, but I also could open one eye enough to see the shadow of the bookcase in my bedroom and saw it as something else - I don't remember what but it scared me. This was completely terrifying, and I believe it to be a side effect of the Topamax, since I had the same thing with gabapentin. If it happens again I'll reduce the dosage. Luckily these episodes only last about 30-60 seconds, but when I was having them last fall they were bad enough I was afraid to sleep. (I didn't realize at the time that they were a side effect of the gabapentin.)

I am SO sick of being so sick. I'm just trying to make it through the next 3 weeks until I see my new specialist, but I feel like I can't catch a break. New migraine symptoms, endless days of severe pain, side effects from meds - I just have no energy left to cope.

DBF has been wonderful in taking care of me, and in putting up with my moodiness. I've been alternately irritable and depressed. It seems like sometimes I'll have some worse depression before the severe pain sets in, and by the end of it I'm just exhausted.

I do plan to get a referral to a therapist or psychiatrist. I saw a therapist briefly last summer through my EAP, which helped me through a rough spot. I'm in an even rougher spot right now. I feel like I'm coping ok all things considered, but this is more than anyone should have to put up with.

So now, it's Sunday night and I'm dreading another week of work. I'll take off time if I need to, but I'm really trying not to use up my year's worth of time in the next three weeks. I'll be talking to HR this week about getting intermittent FMLA in place, even though I do have to use my paid time off first - but I think I'll feel better if I know that's there.

Anyway, I could just use a little support from my wonderful forum family. I know I can get to May 21 with all of you here, but I think I need some more hugs!

Thanks, everyone - you guys really are the best.

Good Morning MJ!

Sorry to hear the depression is hitting you so hard again this week. But it's totally understandable because being in non-stop pain is depressing. I'm lucky, I get a day or two off every week, and I'm still pretty miserable about the situation, so I can't even begin to imagine how you must be feeling.

I'm also sorry to hear you are still getting these awful symptoms and side effects. I can't help but think if these are related to the Topa , as you think they are, maybe you should talk to your new neuro about a different preventive med?

Speaking of Topa, the reason I discontinued it is because by the time I hit 50mg, I started feeling extremely depressed. Now, I am also on meds for clinical depression, so I don't know if it was the Topa itself or if it was interfering with the way I absorb my depression meds. I just wanted to throw it out there that the Topa might be at least contributing to the depression.

But don't worry MJ, we are all here for you whenever you need us for support and virtual hugs! Just try to take it a day at a time! I know we are all keeping our fingers crossed for cancellations at your new doc. If not, it will be May 21 before you know it!

MJ -

This just stinks -

Yes, I think I too would be depressed, tired, and just warn the heck out from going through what you have been going through.

I think you've mentioned trying to get into "new specialist" earlier before.....I know it seems like a long time away when you are in so much pain, and with new symptoms popping up left and right.

You are less then a month now my dear. I know that probably isn't that comforting, but you are almost there. You will be seeing them in 24 days!!!!

Maybe just giving them a call and seeing what they say about the new symptoms, just to see if this is anything to be concerned with? I know you don't really wish to deal with "old neuro" as much - but that is always just an option to get you by....

I am so sorry honey!

Keep us posted! You know we are always here for you!!!!!!

Oh MJ, poor dear sweetheart! I want to call you by all the smoochy little pet names we used to call our kids - we'd never get away with it any more - Petunia-Pie - Honey-Pumpkin - Peanutsky-Wutsky... It gets really mushy...

It just stinks with a capital Stink. I wish I could do something to make it better. One day at a time, the 21st is getting closer! It's almost May now! Just hang in there sweetheart. Take time off when you really need it. Do whatever it takes to take care of you.

Megs

MJ,
You always have all the support you need from me here. It seems like so little to give when you are going through so much.

I'm looking for the magic wand and it just isn't wanting to be found. I might use it first on my 17 year old daughter. The whole 17 year old attitude thing. Something I'm sure you never did!!

I have to thank you for telling me about something that I didn't know was a side effect though. The weird dream thing, I started about a year ago. I had no idea what it was from. They were a bit worse when I went off Pamelor, but I still get them every once in a while and they scare the wits out of me. I'm still on 75 mg of Topa.

Take care of yourself. Talk to work about how you can get through the next 3 weeks, but take care of yourself first. I know it's hard to do that sometimes, but you have to do that. I didn't last year and it was a big mistake. My ex is an architect, owns his own firm. He has had staff that has worked some from home. With auto cad can you do any of that? Is it something they would try?


Cindy

Hang in there MJ, you're doing great! Your appointment is almost here. I'm still hoping you to get into the specialist's office sooner than you think!

Big hugs to you and to your DBF too, what a gem of a guy he is, MJ! Please thank him from us for taking such fantastic care of you.



All my best to you!

MJ- This is just a flat out bad situation- no way around it. And I am so sorry for all you've been going through Thanks for checking in- I've been wondering how you've been doing. Let us know how you're feeling later!

Valerie

Well, the good news is the pain isn't too bad today, at least not right now. I'll take it. The main reason I've been able to keep working through all of this is that the pain doesn't usually get too awful until mid or late afternoon. Morning is usually ok. So right now the pain is still ok - not gone, of course - but ok. I am thankful for that.

Kat, I've been wondering myself if the Topa is contributing to the depression. There's no question I've been more depressed since I've increased the dosage, but the pain has also been worse, and all this other stuff has been going on. So who knows what it is? I do plan to talk to my new doc about these concerns, and see if he thinks it's worth continuing through all of this. I'm trying to give it a fair trial because, out of the five preventives I've tried in the past year, I've only given one a fair trial (nortriptryline). Three of them I've had bad reactions to and the other is the Topa.

Ugh, I just feel like this shouldn't have to be so hard, all the time, and I'm really trying to keep a positive outlook on this situation. I know I don't have to tell all of you how hard it is with the constant pain and all. I need a break!

I will be calling again today to check in and see if there are any cancellations. When I checked on Friday, they did actually have a cancellation for a week sooner, but I'll be out of town then so I stuck with my original appointment.

Megs, I don't mind at all being babied a bit right now with the smoochy pet names. Like my mom tells me - sometimes there's nothing better than a mom! And there are lots of moms on this board and I think that's a lot of the reason it's such a great family!

I'm doing ok right now, and that's all I'm thinking about. Just trying to keep my head down and not get too stressed out. I may ask DBF to make me some more (diet-friendly) brownies this week.

I'll check back in later - thanks for the hugs and all. It really does help! You guys are keeping me going. I just need to make it through a few more weeks. That's what I keep telling myself. And, if for some reason things don't work out with this new guy, I've already decided that I'll just go to Dr K. Having that last-resort plan feels better. But I don't think I'll need it (I hope not) because I have a cautiously good feeling about this new specialist.

I'm rambling now... I should get back to work. At least if I'm stuck being sick I have the best forum family in the world to help me get through it.

You could be on the right track with the Topa possibly causing some of the depression. I mean not to mention the constant pain, that doesn't really help either!

Glad the pain isn't too bad today, but still having the pain at all just stinks!!!

We are here baby!!!!

MJ--

Hang in there!!! I promise I'll be trying to have your back every afternoon, as best I can. I'll be thinking of you and praying. That's one of the reasons I don't work fulltime anymore. We can survive without the money, and that way I don't have to try to work with migraines all the time.

I'm also praying that this will be THE doctor--cause THAT will make all the difference. So all you have to do is survive--hour by hour, day by day.

Tracie

Awww MJ,

I just saw this. My poor MJ, you are going through so much I wish I could make it go away. Just take one day at a time, or one hour at time. Whatever it takes. Here are some more hugs to keep you going until you see your new doc

And I think Kat is on to something about the topa. When I upped the dosage to 75mg I had depression and other really wierd symptoms, like heart palpations and wierd dreams.

But, heck this stinks, you have been through such a rough time. We will do everything we can to get you through to the 21st. I hope this is THE doctor!! Like Tracie just said it can make all the difference. Just remember, we got your back baby

Dar

Well, I made it through today, without the pain getting to be too bad. Still no cancellations, but the scheduler did tell me to keep trying back. (I am very encouraged that this staff is so much more polite and helpful than at the last place, if nothing else.)

One more day down - just trying to take it a little bit at a time. Thanks for your hugs and prayers, everyone. I'm hanging in there.

For what it's worth, I had MAJOR depression on Topamax. I've never been depressed before, EVER but topamax really put me into a funk. I just wanted to crawl into a hole and not be around anyone which is not like me at all. Everyone around me said the topamax changed my personality in a major way. Once I went off the topamax, it was amazing how much better I felt. My head still hurt but I felt like myself again. Topamax can do weird things to you if you're sensitive. We're here for you though. Take care.

Well, as of today I'm reducing my dosage from 75 to 50 mg. For some reason my body is just hating the Topa lately.

Last night there was no question in my mind that I'm having weird side effects from the Topa. I've been much more moody than I usually am, and I definitely noticed it yesterday. A few hours after my PM dose, I had this really crazy anxiety - something I *never* have - and I completely did not feel like myself. Even with listening to my relaxation CD I couldn't fall asleep for a long time, and I slept horribly.

Plus, there are the other side effects I've been trying to just put up with - nausea, occasional stomach pain, complete lack of appetite, hair loss, tremors, cognitive issues (which have gotten a bit better) - there are others but I can't remember them all right now. These mood changes though are too much, so I'm cutting it back.

It's just amazing to me. I took 50 mg Topa for 2.5 years with tolerable side effects, and it worked wonders for me. My body completely hates this medication now.

So, needless to say I'm exhausted today, still not feeling quite myself, just sort of edgy and anxious, and nauseous. That kind of nauseous feeling you get when you eat *way* too much food, except I know it's the Topa killing my appetite. Overeating has not been a problem lately!

I hate this. I hate feeling like this. I feel bad enough without drugs making me feel worse. I told DBF what's going on and why I'm acting so strange so at least he knows. He held me in his arms last night for a long time while I sobbed.

Ugh - only 3 weeks from today until I see the new doctor. I will be telling him that I want off both the Topa and nortriptyline.

MJ,
First . Are you at home I do sincerly hope dear friend? You need rest. As much as you can get.

Take care.

Cindy