wheelchair and lap robe

It won't come as a surprise that I've been pretty blue this week. Although the compression socks have helped more than I expected, I'm still struggling. On Wednesday, for science, I decided to time myself and find the new boundaries of what I can and can't do.  I was feeling pretty good, and decided to attempt some housework. I carried a load of laundry upstairs, folded it and put it away. I stripped our bed and put on clean sheets. I made the boys' beds. And stuff like that. I started flagging soon, but hung in there, because I wanted to know where the edge really was. At just about the half-hour mark, I started literally seeing stars. I started obviously staggering and stumbling, and felt so lightheaded that I simply had no choice but to lie down.

So… the migraine diet, PLUS, high-salt, high-fluids, PLUS compression socks, gets me about a half hour of upright time. Granted this is an improvement, but still far, far FAR afield of what a normal mother of two extremely active young boys needs to be able to handle. Like 8-10-14 hours? That would be more like it. I was expecting a call from the nurse at the cardiologist's office, and didn't get one, so I called them and left a message. The next day, Thursday, I was having one of those really horrible days where I just felt that through all my activities it was taking a lot of effort not to burst into full on crying. And then the nurse called– and made it much, much worse.

I told her about my test, and about the half-hour limit. I guess what I wanted from her was something along the lines of "Oh! I didn't realize how miserable you are! I guess we really should offer you some sort of treatment!" But instead, she said, "Well, that's too much for you! You can't DO THAT. You have to lie down after ten minutes!" That is to say, accommodate myself to the sickness, rather than trying to make the sickness go away.

I think I must have sounded rather desperate when I said, "But… But what I'm trying to do here is get back to some sort of normal life!" And she said, "Honestly, there's no easy way to do that."

This news hit me with a thud. What I suddenly realized then was that when, on Christmas Eve, they found me positive for POTS on the tilt-table test, it really was horrible, horrible news. I didn't really get that at the time. People had been telling me I had POTS for a while, at least Vince had, and then the neurologist, too, had said he expected "orthostatic hypotension" to be a part of the picture. This may sound strange, but when I got that news I was actually sort of happy– because I thought, "Hey, they've finally figured out the problem– and now they can fix it!!" Apparently not.

So I said to the nurse, "But what about exercising? I used to be able to actually work out."

She said, "No! We don't want you doing that. You can't do that! It's too much for you! The doctor suggests you simply lie on your back and gently move your legs."

While she didn't come right out and say, "honey, just get yourself a wheelchair and a lap robe because THAT's your speed now" she definitely implied it! Coupled with the refusal to offer me any sort of medication, and the bleak prognosis "It will be a long, long slow recovery," this resulted in a profound sense of hopelessness on my part.  Am I at 43 supposed to accept that I have to advance by 30 years and check myself into a rest home right now? While I do like knitting, this is not what I want.

Which brings me to the Cymbalta.

Let's review the options at this point:

1) Try a low dose of Cymbalta, the only thing actionable anyone is offering me right now. 

2) See more doctors, get more tests and opinions. Go and get evaluated for Ehlers-Danlos and Raynaud's SYndromes (the nurse said they DO want me to do that.) Find an internist to help me manage this situation.

3) Try all the alternative therapies in the book. Try accupuncture, Chinese herbs, homeopathy, etc. (I'm already trying lots of vitamins…)

4) Accept this as my new reality.  

Then last night, despite my attempts to follow the migraine diet to the letter, I had an episode that was really bad. Dizziness… and visual weirdness. Rippling and glowing things in the room. The sensation of the couch rocking on board a ship. That type of thing. Hypersensitivity to the sound of crashing race cars and an acute dislike of being climbed on and tickled. I've gotten so now I can really tell the difference between POTS dizziness and migraine dizziness and this was all about migraine. 

Ben and I had a long talk about this situation. What it boils down to is that I have tried a lot of other things. I am very strict about the migraine diet, and it really does limit my life a great deal (very little eating out, no eating food at other people's houses that I didn't bring myself, etc., etc.). And still it's not enough. I've been ingesting crazy amounts of salt. I'm doing the stockings. The alternative therapy idea sounds like just another project to me right now. I'm EXHAUSTED by this project as it is! I can't fathom trying to find another doctor of any kind right now. And as for acceptance, I refuse to accept this. I want and need my life back.

So.

This morning the neurologist's asst. called and said he wants to see me March 10.  She said the smartest thing would be to start taking a very low dose of Cymbalta now so that we can discuss it when I come in in a few weeks. I told her of my fears about it, and asked for an exit strategy. She was understanding, and said that when I want to get off it, there's a two-week phase-out period. I asked about other options that are not SSRI's and SSNRI's, (cymbalta is the latter) and she said, honestly this is really the best drug for my situation. She said it really has helped a lot of people. I gave her the number of my pharmacy and she said she would call it in. 

They wore me down. Or maybe it was circumstances. But I can't go on like this, and I can't go on wondering whether there really is a pill out there that could help me. I'm going to give it a try. If I start writing crazy manifestos, diatribes, screeds, situation comedies or beat poetry, this will explain it.