It still hurts

I’ve started writing this post many times, but it just didn’t come out right.

I planed to write a post each day I was in the Diamond Headache Unit. but I was so busy while I was there.

Then I tried to write a detailed post saying everything I did there, all the things they do, but it got to be too long, and I got too tired. That’s how I’ve been since I got back, just so very tired.

The program there was very good. There were a lot of classes you could attend, like yoga, biofeedback, nutrition, stress reduction, pharmaceuticals…a lot of things to do! It’s really a very good clinic. It just didn’t work for me, and that’s been very hard to tell people. I had so much hope, I didn’t realize just how much, until I didn’t get the desired results.

I was there for three weeks. I decided it was time to come home. Dr. Diamond didn’t say it, I did. I had just been away too long. If I lived close to the hospital I might have stayed, but being so far away was hard. I needed to get back to make sure my pets were okay, they’d never had a sitter for so long. I needed to get back for my Spravato treatments. I had a treatment the day before I left, so I missed two treatments. I was happy that I didn’t crash being off of it that long. Of course I’m sad that the treatment didn’t work for me, but I’m not depressed. That’s a great thing.

When I was at Diamond I did have times where my pain was negligible. That was amazing. But after a stressful night in a hotel with extreme constipation, and then a long plane ride and 2 hour car ride home, I had a major migraine, again.

The first week back it did seem to be a bit better. When I took my abortive, it worked. Then we had more monsoon days, where it was bright and sunny all day, with extreme storms in the evening. My head…oh my head.

I was seeing Dr. Diamond and her team remotely, and they w doing their best to get things under control. It’s just takes a long time. And I don’t like treating all these symptoms without treating the cause. I know they don’t know the cause of migraines, but they do know there are triggers, and evidently we haven’t found out what all my triggers are. We do know that the extreme weather changes are a trigger, but that only happens about 3 months a year. Last year it didn’t happen at all. So what triggers me the rest of the time? Why do I have a migraine all the time? Or is this not a migraine? I’m so very confused. That’s the biggest reason I haven’t been writing. I’m confused. I don’t really know how to go about making things better. My quality of life isn’t very good right now, I’m try hard to fix that. Don’t get me wrong, I accept that I’m chronically ill, I just need to find a way to increase my ….well…quality of life. And I’m working on it.

But let me say more about my treatment with Diamond. I now have an arsenal of medications that I can use, but I’m not too keen on having so much medication. I’m having side effects, and I don’t know which medication it’s coming from or if it’s a combination of meds interacting…or what? I’m now on I think 3 preventatives…or is it 4…yes, I think it’s 4. I also have 3 abortives I can use. That’s a heck of a lot of meds! Then they say that they can’t give me things because I’m not tolerating medications. Ya think maybe it’s because I’m already on a shit load of meds?? I was put on one medication to help with the weather related migraines. I don’t mind taking a medication for that since you can’t avoid or control the weather, but this medication is the same medication I took for Idiopathic Intracranial Hypertension. That medication lowers your cerebral spinal fluid pressure, heck it reduces any pressure you may have….like your blood pressure. Taking this medication when I don’t really need it all the time, caused my BP to drop drastically! I could barely walk. Every time I got up I almost blacked out. I was so out of it I couldn’t really figure out what was wrong. I thought it was just because of the major migraine I was having. Then I strapped on my BP cuff and stood up, while holding on to the wall and being propped up, took my BP. It was 77/49. No wonder I couldn’t walk and my head hurt so bad when I was upright. So I’m have taken myself off this drug. Well I’m tapering off, I’m almost all the way off this med and I feel much better. Still have a headache, but much better.

I had an appointment with one of Dr. Diamond’s PAs last week and found out something I misunderstood. I thought I could only take 2 abortives a week. That’s what I’ve always been told. But I’ve only been given one type of abortive at a time before, now I have 4 different types of abortives. I have an ergot, an NSAID, a muscle relaxant, and what I think is an anti-seizure medication. She told me I can take EACH of these twice a week, just rotate through. So that means I can basically have an abortive every day. That’s pretty cool. Now if all of them worked that would be wonderful, but they don’t all work the same. However, I was given a chart that says what to take when I have a low grade migraine, what to take if it’s moderate, and what to take if it’s severe. That’s good to know. I have found that if I take the NSAID with another medication they work better together. (yes this is allowed) Sot hat reduces the number of days I have for meds if I take two together, but it’s still a heck of a lot better than just 2 a week. That has made things easier. I just don’t want to be on so many medications. One I think I’m going to drop soon, because I should have seen a difference by now, and I haven’t. That’s one down! Woot! We celebrate every success, no matter how small, because we don’t have a lot of them.

I’ve changed my diet, and I think I’m going to go even more extreme…well different than most people eat. I have cut out almost all meat based products. I’m still having non fat plain Greek yogurt sometimes, but that’s about it. Oh I did have an egg white omelet when we went out for breakfast with Stuart’s father, I don’t feel like explaining my diet preferences to him, or anyone else, it’s hard enough dealing with my diet restrictions for medical reasons. I’m basically eating vegetables, fruit, whole grains, beans, nuts and seeds. Unfortunately I have been eating too many nuts and seeds so I haven’t lowered my calorie count at all so no weight loss. Now I’m going to reduce the amount of grains, nuts, and starchy vegetables, to reset my body. I have to cut out all soda! I can’t have just a little, it’s keeping my body in the junk food craving stage. I really want to detox away from all of that and see if I feel better.

I’m tired. I’m really just to tired of dealing with all of this. I’m tired of the headache, and tired of the treatments, and tired of being tired. So I’m resting now. I’m not rushing any more.

Okay, I wrote that a couple of weeks ago, why didn’t I post it? I dunno!

Here’s a snippet of what’s happened since then: I went to Barrow Clinic in Phoenix, I’m transferring all my care there, no more dealing with the woman I’ve been seeing here, and no more having my care in Chicago, that was hard. Harder than I’d like to admit. Dr Diamond wanted me to come back, I just can’t do that, the trip causes too much pain so it negates the treatment I get there.

About Barrow, first I have no idea what the Woman, here has against them, I found them very knowledgeable, they treated me with great respect and validated all my feelings. They changed my medication from Diamond a little, some that were oral are now injectable so I get it faster when I’m in severe pain, and they increased a preventative. They said to wait until January to see if any of the preventatives kick in, if not we will try something else. They also want me to have a tilt table test to rule out things like POTS and see a physical therapist there who specializes in migraines. After I see the physical therapist there a couple of times we can transfer that to Tucson, they will just tell my PT here the treatment plan. Oh and they are recommending that I get another occipital injection that uses a steroid instead of the one I got recently that only used a numbing medication.

Opps, my battery is very low and I don’t have my plug, so I’m going to publish this before I find another reason not to.

I promise I’ll be back very soon.

Catch me up on you all if you can. xoxo

8 thoughts on “It still hurts

  1. Rita McGregor

    Well, it sounds like you got minor help there. Too bad it wasn’t more and better help. It is so frustrating to feel like crap day in and day out for so long. I hope some of these new approaches/meds will help eventually.

    Liked by 1 person

    1. Thank you Rita. You have been going through a huge challenge, you sure know feeling crappy day I and out. I hope the immunotherapy helps and you never have a reaction to anything else ever! If I don’t “see” you before then, have a joyful holiday.❤️❤️❤️

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  2. I’m so glad you got some help and some answers. Barrow Clinic sounds hopeful and it’s wonderful (though should be expected everywhere) about how well you were treated and being validated. It’s too bad Diamond is so far away but you have to do what’s best for you. If only this 2 steps forward, one step back cha cha could count for something, we’d all be having fun dancing up a storm.

    Sending love and healing thoughts your way. 😘

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  3. Have you had migraine-based pt before? And, mother bear says, “Be careful you are still getting enough and the right nutrients.” Nothing wrong with all plant-based, but still need protein, etc.
    From one extreme to the other with the bp! I do hope that some combination of clinics, treatments, meds, etc. help.

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    1. Hahaha, we mother each other don’t we? Don’t worry, I’m watching it, and I have a physical coming up soon so I’ll have it checked just to make sure. I may have to add a little dairy to get enough protein because beans are starting to cause some GI distress. Tofu does fine though, so maybe I just need to add more. I supplement my B12 and D, so I think I’m good there, but a check wouldn’t hurt.
      I haven’t had migraine focused PT before, except for the little I had at Diamond. Looks like that will need to wait until January though.
      My BP is normal most of the time, just dips too far when I go down and up. We’ll see. I’m not going to worry. It’s it high! I’m okay! I just need to be careful, and I am.
      Getting trigger point injections today!! Crioss fingers it helps a lot this time.
      Thank you for your best wishes and the caring mother Lorraine. 😘😁😁

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