A Revised Migraine Plan

Soooooo. After three migraines in three days, I realize I need to rethink my plan to cut back totally on one of my migraine meds.

I'd originally been taking five 25 mg tablets of Topamax each day, and slowly, very slowly, over months, I've managed to cut that back to one 25 mg tablet each day. And all was going well. Surprisingly well. Supremely well. Happy-making well.

Until this past week, that is, when I cut out 3 days worth of those tablets (on Monday, Wednesday and Friday). That wasn't unusual per se; it's the sort of schedule I've used all along to get down to the one pill/day. But this time, my body said, "NOOOOOOOOO!" loudly and clearly, and the migraines started.

Needless to say, I'll start back on that one pill every day schedule again...

Sigh, but, hey, whatever really. It's better than five.

A Neurologist's Thoughts

Saw my neurologist yesterday for my regular semi-annual checkup re the migraines. It was the first time I'd seen him since the RA diagnosis. I told him that I'd only had one migraine since the RA started, but that over the last few months I have at times had odd visual disturbances: what looks like black horizontal lines across my entire field of vision. I said I'd mentioned them to my regular doctor and optometrist, both of whom I'd seen in the past couple of weeks, and that they thought they could possibly be migraine auras, even though they never lasted for more than a minute to a few minutes.

My neurologist thought that was possible, that they were auras trying to come out, so to speak. He also thought that all the anti-inflammatory medication I was on for the RA was having a suppressing effect on the migraines, and that there have been studies linking inflammation and migraines. He also said that there are cases of patients being diagnosed with other conditions, like cancer, whose migraines go away.

He didn't say this, but is it a case of a body knowing that you can only handle so much? Now, if only life was like that, too! Hmmm!

Now, I just need to start really trying to wean myself off my migraine meds to see what happens...I really just do not need any more crap in the form of pain or anything right now. But I'm game to slowly, slowly give it a try. And he's such an awesome doctor to make me feel like I'm the one in charge of what to do when and to trust me to do what's right. You gotta like that!

What a Pain

I haven't posted anything for a few days, mostly because I'm so tired, mentally and physically. I've barely been tweeting anything either I feel that blah.

 I'm also noticing what seems to be becoming something of a cycle the last three weeks or so: I do my Methotrexate and Enbrel injections on Wednesday nights, but I don't think the drugs are lasting the full week. Starting Mondays or Tuesdays, I start getting more sore. My hands and feet, plus random other places. On offer today: my knees, elbows, wrists and neck.

Now, all of these places and others are sore/achy/cause brief sharp pain on and off at times, but this is something more consistent. And today they've been hurting for longer periods. I'm not saying they're killing me. This isn't comparable to the pain I felt when I had migraines before going on prophylactics – that pain had me lying on the bathroom floor contemplating smashing my head against the tiled wall to try to counteract the pain (oh, the joys of migraines!).

No, this pain is sharpish, but ongoing. Achy and ongoing. Throbbing and ongoing. And it's that ongoing nature that's set my teeth on edge and – partially – brought tears to my eyes (I say partially because part of the reason my eyes welled up is the thought that there might be no end to this cycle of awfulness...and that there is no end to the RA...).

The only time I ever went to the hospital because of a migraine was the time my doctor and I decided to stop my daily meds to see if the migraines had maybe, just maybe, stopped. I ended up with a migraine that wasn't too bad but that lasted for 72 hours. If the pain had lasted for less time I could have handled it, but by the time it got to about 60 hours, I'd had enough and couldn't take it anymore.

I sincerely believe pain is relative, for me at least. More intense pain of short duration is easier for me to handle than less intense pain of long and consistent duration.

And I'm trying to stay away from Tylenol because I want to get an absolutely unadulterated idea of exactly what the Methotrexate, Enbrel and diclofenac I'm on are doing for me so I can report that to my rheumatologist when I see her next month.

Anyway, that's pretty much it. Except this. If I haven't said it before, I'll say it now: RA seriously sucks.

A Migraine Cure!

I think I've found a cure for migraines: RA!

OK, I'm sure that's not the case – and I don't want to be taken for a crackpot – but I've only had one migraine since getting RA back at the end of November. That is totally unusual for me. The norm would be 3-4 a month.

So what's the deal? Must be the drugs I'm on. First I thought it was the Tylenol Extra-Strength (I was taking 1000 mg daily), but I stopped that about three weeks ago. So I can only presume that the other anti-inflammatory (Voltaren, aka diclofenac) I'm on or the Enbrel or Methotrexate are having some kind of effect on my migraines. Especially since spring and fall are horrible times of year for me, with falling barometric pressure being the worst trigger.

Must discuss with my neurologist next time I see him!

P.S. March 20: It's occurred to me that since there's been no sign of migraines, I can try cutting back on my prophylactic medication, so I started doing that today. I cut my morning dose of Topamax by 25 mg. We'll see how that goes, but I'm happy to be taking as little medication as possible, given how many drugs I'm on overall. Don't get me wrong, I am so thankful for what drugs can do for me – I shudder to think about what life would be like without them – but if I can live life equally well without them, I'm all for that!

Raynaud's or Get Out the Mittens a.k.a. Me As a Three-Legged Dog

So, I can feel the soreness seeping back into my body. I'm down to 5mg daily of Prednisone as of yesterday. My hands were somewhat stiff when I woke up this morning, and I'm aching more overall. Having said that, things aren't as bad as there were at the beginning, so that's good! I'll be interested to see how the Methotrexate and Enbrel are doing on their own when I drop the Prednisone completely next Thursday...

In the meantime, another interesting twist in the RA saga. I've developed what I'm pretty sure is Raynaud's syndrome or disease (haven't been diagnosed yet, so don't quote me!). Last night I went out for dinner with a friend. Before leaving I went to the washroom, washed my hands with cold water (no hot water on tap for some reason), then left. It was cold out, and my car was cold, but it didn't take that long to get home. Still, I was cold and left my gloves on till I got to my apartment, and when I took my gloves off, multiple fingers (not all) had that corpse-like look (in Raynaud's, small arteries in places like your fingers narrow, constricting blood flow).

I've had Raynaud's before (medication-induced by beta-blockers I was on for migraine prophylaxis), so I'm pretty sure that's what was going on, but I'm not happy about it. It's potentially dangerous, and I seriously don't need more crap on top of everything else, but what do you do? Deal, cause what else are you going to do?

I was telling my friend last night that I have a sort of mantra or theory or policy or whatever you want to call it (feeling a bit brain dead right now as it's the end of the week). It's my three-legged dog theory. A dog that loses a leg doesn't freak out about the fact that it's lost a leg – it doesn't know any better. It just starts hopping around on three legs. So that's what I'm trying to do really: hop around and not focus on what's been lost...

P.S. I should have taken a picture of my hands last night (or hand – hard to take a pic of two hands with an iPhone unless someone else is doing it!). Next time the Raynaud's thing happens, I will so anyone who doesn't know what it looks like can see!

P.P.S. Settling in to watch the Olympics. I am a total Olympics freak – once I start, I cannot stop! I will watch anything and everything. And I'm not even a sports nut! So sorry they had to start in such a sad way, though...