Migraine

First an update... I just called my PCP's office and while they can't get me in for an appointment until May 7, the scheduler did email my doc. Hopefully I get a call back. I love my PCP so I'm really hoping she can do something for me. I feel like these past few months I've just been getting worse and worse, and right now I'm feeling abandoned by the medical community and I just need some relief.

FXTX, I'm stuck between a rock and a hard place right now. I'm in a bad migraine cycle, and I've had daily migraines/constant pain since November. That makes it hard to know when to treat with any abortives without risking medication overuse headache (MOH), and impossible to treat at the first sign of pain, since the pain is always there. Obviously I need some good preventives, but in the past year I haven't found any that have worked yet. I'm still looking, but in the meantime my pattern has gotten much more severe and now I'm at the point where I don't think just preventives are going to be enough to break the cycle.

If that wasn't enough, I'm between doctors at the moment. I have a great neuro, but he's out of ideas. He referred me to a HA specialist, who didn't work out so I fired her. My neuro has referred me to another HA specialist, but the earliest appt I could get is May 21. My neuro doesn't have any ideas on how to break this cycle, my new specialist isn't willing to do much of anything until he sees me for my first appointment, and my last specialist is useless. So I'm trying to get through the next month.

I do want to thank you for sharing your story though. The first time I took Topa, in college, I had great success with it. I went from headaches every day and migraines once a week to no headaches in less than a week. I only ever needed a 50 mg dose for 2.5 years. My first neuro had me come off it to see how I would do and since then (it's been two years) I've just had a terrible time with medication, side effects and worsening migraines. Hearing success stories here is one of the things that keeps me going. I know there's something out there that will help me, I just have to find it - and find a doctor that will help me find it.

Ok... DBF and I are going home for lunch in a few minutes. I'll post here again if I hear anything back from my PCP. If she doesn't have any suggestions I may end up trying the Frova.

MJ,

I'm so sorry your going through this, just remember, May is almost here and your appointment with your specialist will be here before you know it. (I'm still hopeful you'll get in sooner)

Any word from your PCP yet? Frova or IV?

Big, huge (but very gentle) hugs!!

I'll keep you in my thoughts and prayers, MJ.

MJ,

You poor thing. I am so sorry you are going through this. I hope you get relief soon, that is torture. Why are they making you wait to be seen? You are in pain now! You should at least be able to get something for the pain in the here and now, at least something to break the cycle. You would think any Dr trained in the basics of medicine would offer that alternative.

You'll be in my prayers and hopefully things will turn around for you.

Please keep us updated.

Ok, I just got off the phone with my PCP - she herself called me and spent almost 10 minutes on the phone with me. I am so glad I have a good PCP even if nothing else right now!

She suggested I go ahead and bump up my dose of Topamax to 100 mg and split it into 2 doses (50 mg twice a day), since I'm tolerating the 75 mg fairly well. She's also calling in a script for Relpax into my pharmacy for me, for at least another abortive to try, since the Imitrex and Frova aren't working as well as they were. I asked her about a steroid pack, and she said she doesn't have any experience with it so it would be a guess on her part. Fair enough. I did thank her for calling her and for her help. And she was very sympathetic, and answered all of my questions. She asked that I give my new specialist her card so she gets reports from him, which I will do - that way I don't have to do all the legwork of keeping her in the loop.

So, still no real option to break this cycle but at least some changes to make. I may try the Frova, but I'm not loving that option because of the MOH risk. I may call and try another IV treatment at the fired specialist's office. I don't know. This is incredibly frustrating. This has not been a great week, between the depression earlier and then the severe pain last night. I am at least feeling a lot less depressed, but that doesn't make the pain go away.

Laura and FXTX, thanks for the hugs and prayers. Knowing you guys are thinking of me really does help a lot. Knowing I have this forum here is what gets me through the day!

MJ

I don't know--with all you've gone thru this week--you're a lot braver than me. I think I would be ready for an ER visit and at least an 8 hour respite from the pain. I'd be ready to do the Frova. Moh is a pain but often not so painful as the primary. Do you have anything that you use for sleep? I have such a problem with MOH with triptans that part of my headache plan is that I use alprazolam for sleep for a day when I suspect MOH is developing.

Tracie

MJ I just wanted to say hi - I am feeling for you. My migraine today is having me very fuzzy-brained so I can't really weigh in on the meds conversation - I guess I was thinking maybe another iv would be worth it because even a little relief is better than non? if I was you i'd be wanting to throw everhting I could at this! ok now I can hardly type or see but know i'm tthinking of you.
-m

Well, here is my plan. I'm going to call the fired specialist first thing tomorrow and see if I can get in for an IV. If not, I'll give the Frova a shot. I am also going to up the Topa like my PCP suggested, and tomorrow I will pick up the Relpax, though it will be a little while before I can try that.

Tracie and Megs, thanks for stopping by. Tracie, I don't have anything I use for sleep. Usually I can ice my head enough, or treat enough with abortives, to get the pain to a tolerable level and sleep. Not an ideal situation, but it's what I've got right now. My fired specialist did say I could try melatonin supplements for sleep, I just haven't picked any up yet. So I do at least have that option.

Megs, hun, thanks for thinking of me. Hope the beastie leaves you be soon.

I'm going to read around here for some forum therapy for a while. At least this week is almost over. Thanks again for being there for me, everyone.

Wow MJ--What a week, what a month! I'm so bummed out for you! I'm fortunate that my PC is really easy to get in to see... but at least you were able to talk on the phone with yours--that's great! (how nice!!) I'm glad she gave you some solutions.

I'm glad you're going to try to get an IV treatment.. I'd agree that seems like something... some relief is a heck of a lot better than no relief, right? (I'd trade pain level 5-6 for 7-8 any day!!) One other thought I had... I don't know if you have alternative practitioners in your arsenal... I know you've mentioned trying acupuncture in the past. I know a lot of people who have effective treatment plans for chronic conditions don't see their practitioners on a "regular" basis per se, but they'll give them a call when the need arises.. this would be that "need"?? Although chiropractic was NOT a fix for me.. I have one chiro who did none "crackle pop" adjustments (he used the plunger thingy" and did cranial sacral adjustments who gave me *some* relief... he was the most effective person out of everyone. I quit seeing him because he was 1. too far away 2. too expensive 3. a little too emotionally based and my hubby didn't like him. However, if I had a crisis, I would go back to him and get a little help. Maybe something like that could help you through the ickness of this?

I'm picturing your T-shirt that you mentioned.. I guess if we can't get a little humor out of the situation we're REALLY in trouble, eh? I started chuckling to myself whenever I'd hear someone around me say "oh, I have a headache" but I've tried to tone it down... I think it makes me sound crazy. You'll get through it... don't forget how strong this pain has made you, how strong it's making you. That's something I try to dwell on a lot... every pain has it's purpose... mostly just when you view it in the "rear view window"... but purpose nonetheless. Hang in there.

Oh MJ,

I'm SO sorry to hear your week has been progressing like this. I'm praying for you and thinking of you. I hope you're getting some relief or decrease in pain from the meds.

You are so strong for keeping up the fight even though it is hard. Way to go migraine sister!

Sending and lots of

Kelly

Some good news, finally! I did get in for the IV treatment today. They gave me some DHE and Toradol, with Phenergan for the nausea from the DHE. The Phenergan made me incredibly woozy and more nauseous, so they tried Zofran. The Zofran did the trick. While the IV didn't get rid of the pain completely (I didn't expect it to) it did take it down to a 2 which is very low for me - lower than it ever is on its own or than I can get it with abortives.

DBF came with me, too, so I had him for moral support. I came home and napped for a few hours. I'm feeling much better than I was earlier in the week. Hopefully this sticks around for a little while.

Candace, thanks for the suggestion about alternative practitioners. I will definitely keep that in mind. I can definitely go back to my acupuncturist if all else fails. I know she would be willing to help me out, even if she did give me a lecture about medication. Thanks for your encouragement. You're right, if I can get through this, I can get through anything.

Kelly, thanks for your encouragement too! Your thoughts and prayers mean a lot to me. I know I wouldn't have gotten through this week without knowing I had everyone here to help me through. The IV did work some wonders today, even if my pain isn't gone it's less and that just makes a huge difference sometimes.

Hopefully this will be an uneventful weekend... thanks again for being here with me!

How about a few of these scaly smooshes?

Thanks, Droolie! I'll always take some scaly smooshes!

MJ-

I'm so glad to hear that the pain was taken down somewhat and gave you some relief.

Hoping that your weekend is going okay.

Kelly

MJ,

Just wanted to add my warm concern and support. I'm so glad you were able to get treatment yesterday and that your DBF was there with you. I know how much comfort that is. Hope you're having a calm, low-pain, nice weekend.