Where am I

16 May

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.


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4 responses to “Where am I

  1. joey

    May 16, 2018 at 7:52 pm

    My Like is only in support, I don’t actually Like this post. I sure do miss you, and am very glad to read you. I wish I could read better news.
    I have a coupla friends with Raynaud’s. One has blue feet a lot. She won’t wear sandals cause “Smurf feet” but she mostly complains of joint pain from RA, which is likely the cause of her Raynaud’s. We’re complex beings, even on the physical level alone. :/
    Mentally, you’re clearly in the midst of a shitstorm. Why is your shitstorm so long?!? I wish I could alleviate your suffering in any way. If there is anything I can do, tell me, let me. I am just so sorry to read this. Just, ugh.
    I’m glad your husband is able to care for you. I sure wish he didn’t have to. You’d do the same for him, and that’s a blessing to count ❤
    I know we all make mistakes, and I understand your doctor's mistake — my issue is not as much the mistake as the careless apology following it. No, I would not trust her anymore. Quite frankly, it makes me wonder what else she's overlooked the last 12 years.
    I'm going to say something I've never said before, but have you considered seeing a chiropractor? Maybe it's one avenue of hope, worth a shot? Since Dr. House is fictional, I might would try that, maybe even an herbalist or a guru or a shaman. I dunno, Honey. I feel badly that whatever relief you're getting seems to come at such a high cost to you in other ways.
    I'm grateful you popped in. Grateful to read you. Always. ❤

  2. meANXIETYme

    May 16, 2018 at 8:24 pm

    The rheumatologist brought up not wanting to wear sandals with blue feet (which I was wearing) and I said I didn’t care what other people said or thought…that *I* was unhappy seeing the blue-dead looking feet!

    Thank you for your kind offer. If I had something you could do I would tell you. But right now it’s just me muddling through. But I do read all the posts here and that makes me feel happy even when I can’t comment for one reason or another. I also know how lucky I am to have Hub. He’s the best decision I ever made. Ever.

    Yeah, my doctor didn’t really seem all that apologetic or even interested. What a joke. As for the chiropractor…it’s not a great idea for me because of my myofascial pain syndrome and also it can really mess up my migraines. But you may jest…my therapist shares a building with a shaman 😆 and has seen her for Reiki.

    I wish this wasn’t happening to me or to anyone. It sucks. And it’s so hard without my mom around. The first time I went through MAV, which was way less intense, she was there to support both me and Hub. My dad isn’t like that…he just wants to fix things, which irritates me more. So I often feel very alone and isolated. Even though I know people want to help me, there isn’t much to do and then I feel worse that they are let down that they can’t help or fix me.

    Ugh. Rambling. Thanks for your comment, Joey. I appreciate you and your kindness. Always. ❤️

  3. marianallen

    May 17, 2018 at 11:57 am

    Hon, if all we can do is assure you you don’t need to feel guilty that there’s nothing we can do, we’ll do that. ~rereads that sentence. believes it makes sense. nods and decides to pretend it does, anyway~

    • meANXIETYme

      May 17, 2018 at 11:59 am

      Had to reread it slowly but I got it. So thank you for that. 💙


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