Well, mostly house-bound due to the migraines and related symptoms and episodes. I go to see my therapist and to doctor’s appointments (too many), but otherwise I go nowhere right now. I missed all the winter holidays with my family (who are almost next door) because noise and light and visual stimulation would just make the migraines worse. I also did not go to mother’s day at Hub’s mom’s house, but for more reasons than the migraine shit.
I completely changed my diet for 5 months, eating no grains, no sugar, no dairy, no gluten (well, I’ve been that way), no nightshades. I’ve lost 45 pounds (that I could afford to lose, but I lost it over 3 months which is too fast) and my food anxiety is still here. I eat the same basic foods over and over again, and I don’t eat any snacks or drink anything other than water. At the moment, I continue on this very restricted diet because I’m afraid to add anything back in because it might trigger an episode of vertigo or nystagmus.
I thought I was doing better (see my last post) but then I had multiple episodes of vertigo and nystagmus again, even when I didn’t change a thing I was doing or eating. Horribly depressed, we squeezed onto the specialist’s schedule again and made the trip to see him. One of the things he had given me initially was a prescription for klonopin and zofran. He told me to take both for the drive to his office about 40 minutes away in the city. I did, and had a very disassociated conversation with myself while we were driving and waiting for the doctor. Needless to say, if I have to use the klonopin again (it’s a vestibular suppressant), I will only take half a pill.
The specialist told me I had done all I could with diet, so he wanted to put me on a preventative medication. Unfortunately, there’s no targeted migraine medication (yet), so everything is off-label for other issues. After talking about my sleep issues, he offered me a tricyclic anti-depressant at very low doses. I have medication anxiety due to my incredible sensitivity to medications of all kinds. The first two weeks I had to wait until Hub was upstairs with me and he had to literally hand me the pills. After that (and talking to my therapist a lot in therapy), I tried to just consider the pills with indifference rather than with fear or hope. I take them okay now, but…they have side effects of course (including incredibly vivid horror nightmares that I’ve woken Hub up in the middle of the night because I’m screaming in my sleep). Even at low doses, I am sensitive. And in fact, I had started making the rounds of testing and other doctors because my hands and feet started feeling incredibly cold and both fingers, toes, and feet started turning blue-purple. Talk about anxiety! I tried to reduce my dosage of the medication, but my migraine symptoms started coming back the very next morning. So after five days of that I went back up to the higher dose I’d been on for 3 weeks and I went for ultrasounds of my legs and the arteries in my legs (two different tests). I also saw a rheumatologist and then a vascular surgeon because one of the ultrasounds came back showing that I might have an issue with an artery in my ankle or something? In the end (and this is from Monday of this week) both the rheumatologist and the vascular surgeon said this is Raynauds due to the medication. It’s been suggested I wean off the meds and try something else, although Raynauds is generally not dangerous just inconvenient and annoying. At the moment, though, the meds are helping me to some extent so I need to decide which is better, stay on with side effects or go off and feel like absolute shit while trying another med that may or may not work.
So for the moment, I’m holding on the current medication at the current dosage (MAV specialist wanted me at a slightly higher dose than I am now) until after I see the cardiologist tomorrow because the meds I’m taking could have (or be having) heart implications for me. Another reason I might need to consider switching to a different preventative.
I’m tired all the time, more from anxiety and stress than anything else. Hub is still taking care of so much, and I worry about him. We have someone coming in once a month to do a heavy cleaning of the house, but Hub tries to keep up with everything in between. I barely see my family, I don’t go to any gatherings because the noise and visual stimulation is too much. I don’t see or talk to any of the few friends that I have. I don’t crochet, I don’t read, I don’t use the computer. This is the first time I’ve been on the laptop since my last post in January. I mostly use my iPad and phone, and even then not that much and it does bother my eyes and head.
Meanwhile, I need to find a new neurologist because the MAV specialist said if I’m going to change medications he doesn’t want to deal with it. Which was disappointing and frustrating. He said if his first line of medications doesn’t work with a patient, he then suggests they have their primary doctor manage other medication trials…but I don’t want migraines managed by a primary. And plus, I have to find a new primary because during this round of *shit* hitting the fan (blue fingers, blue toes, was it a blood clot or peripheral artery disease or…) she ordered two tests but MIS-ordered one of them. So I had to go to two different testing locations when I could have gone to one, and I had to pay for two tests when it should have been done in one. AND THEN when one of the tests came back she sent me a note in my portal saying everything looked fine, only I pointed out that the radiologist’s note said one of the results noted “diffuse disease.” And she wrote back, “Oh, I must have been looking at the wrong test results, thanks for pointing that out” and then she sent me referrals for the rheumy and vascular doctor. WTF. How do I trust anything she’s done or said over the 12 years I’ve been going to her? She isn’t reading the reports or paying attention to the results or whose test is whose? W.T.F. So yeah now I gotta find a new primary and start all over again with my complicated medical history. Sigh.
I hope the meds continue to make me feel less awful and that I can keep taking them. Meanwhile, I muddle along. Maybe next week I’ll be able to crochet more, or do more with the dogs, or read a few pages in a book. Or maybe I’ll feel better for a day or two. I seriously don’t even know what to hope for at this point.