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

I missed you too much, going to the headache clinic.

Okay, so I couldn’t stay away.

I don’t know how much I will be posting, but I hope you will bare with me when I’m silent for long stretches. Such is the live with chronic illnesses and pain.

If you’d like to know more about what’s been going on with me here’s where I’ve been, sporadically, https://dizzychickblog.wordpress.com/

I have great news! At least I hope it is.

Headache guide by W. Holcombe

I’m leaving Saturday for the Diamond Headache Clinic in Chicago. They are very well known for helping headache patients who are complicated. I had a virtual appointment with Dr. Merle Diamond, she is the daughter of the founder. She was very encouraging. She said we’ll start with a cocktail infusion and if that doesn’t work, she will try something else. I have no idea when I’ll be home. The average stay is 7-10 days, it could be a little less, or more.

When I had my virtual visit with Dr. Diamond she asked when I wanted to come and I said “as soon as possible”, expecting to have to wait for a long time, she said “how about tomorrow?”. Oh my! She really wanted to get me in there fast to get started helping. Unfortunately, I couldn’t go immediately, I have some other appointments that I had to take care of before leaving. Like getting more trigger point injections, I sure don’t want to have the severe nerve pain while I’m there.

They do much more than just medication treatments, I’ll also be working on mindfulness relaxation, nutrition (I have to eat a low tyramine diet while there, and can have no outside food), and other modalities if they think it’s necessary. For example they also do physical therapy, massage…ect.

One more thing, Stuart gets to stay with me. They have the room set up for a companion. So we don’t even have to pay for a hotel room. I couldn’t get any luckier about this trip. Oh, yes I could, since I’ve already hit my maximum out of pocket this isn’t going to cost us anything. Just the plane tickets and a hotel for extra days we are hoping we can spend so we can visit friends out there. And hopefully visit the Art Institute of Chicago, I’ve always wanted to go there. If they are actually open to visitors with the increase of covid cases. Hmmm, will I feel comfortable going there? Oh my! I just thought of that.

I’m excited to go, and also way stressed out . There is so much to do this week to get ready. Luckily Stuart is very good at planning. He has lists for so much. I am a list maker too, but not to the extent he is. It makes me laugh sometimes.

More news about me. I had a urine test to check on my adrenal function and we found that the hormone norepinephrine (noradrenaline) is high. I then had to do a 24 hour urine test, I turned it in yesterday. When I turned it in the lady said, “This is just 24 hours?” Hahaha, I pee a lot! The test will determine if I have a tumor. Tumors on your adrenals are normally benign so I’m not worried about it. Of course if I have one they will remove it. There is also a possibility that it’s high simply because I’ve been under so much stress, especially from pain, for so long I’m stuck in the fight or flight mode. And it could be caused by a medication I’ve been on, (Fetzima) that I’m tapering off of now. If so the relaxation techniques I’m going to learn will help, and I’ll probably need medication at least for a while. This could explain the increase in my symptoms, the sudden high blood pressure, increased heart rate, high anxiety, prolonged migraine….among other things. I’m actually hoping that this is the reason., it could change everything.

I’m going to try to keep a diary of everything that happens at the headache clinic to share here. I hope it will be helpful to some people.

My headache specialist here, that I’m not fond of, actually suggested I go to a headache clinic because she is out of options, and this migraine has been going on way too long. She suggested Diamond or Jefferson, but when I messaged her to tell her I was going, she didn’t even respond. What is wrong with this woman? And why did it take her so long to suggest this? I’m so glad I’m getting a new doctor in November.

I have a virtual appointment with my psychiatrist in about an hour so she can see that I’m still doing well at the lower dose of Fetzima, so I can take it down even more. This is a very slow taper, it’s kind of frustrating, I really want to get off this as soon as possible to see if it may be the culprit. So I’m off to get ready for that, then I need to do more to get ready for the trip. So much to do and my symptoms are very high lately so it’s very hard to get things done. It’s amazing how we can push through so much. Plus, the anxiety about all this is driving me crazy. I know it’s mostly from the norepinephrine, but it doesn’t make it easier. I do so wish I could drive so I could get some things done while Stuart is working. This is really going to wear him out.

Oh, we are so lucky that our pet sitter is available to come stay with out babies during our trip. So he’s not only pet sitting, he’s house sitting. And he’s going to clean! He said he wants us to come back to a clean home. He’s going to get a big tip from me!

I hope you are as happy to be back here at Picnic With Ants as much as I am. I put so much into this site, I just couldn’t give up on it.

How are you all doing? Have you ever had to go to a specialty clinic? I’d love to hear about it.