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.
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.
13 thoughts on “I missed you too much, going to the headache clinic.”
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I’ve missed you but certainly understand survival mode!
Sending lots of love and hope with you to Chicago!
a mild dose of marijuana in your yogurt will help, so long as you are not doing anything mechanical, cheers, I have pain that is long term, and i find that a bit of green, that is medical quality of course, works wonders, hope the health improves, amen
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I am glad you will be getting a new local doctor in November and that you are going to Chicago with your sweetheart!! I really hope this will be a positive experience and something is learned to help you. Very.very best of luck!! :):)
Me–now dealing with cancer. Too long a story. If you’re interested you can check my blog. I am still blogging once a week. More lemons–LOL!
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I saw one of your most recent post. I have been trying to catch up, but haven’t gotten as far along as I’d like.
I’m sorry my friend. I’m so glad you have such a great support system close by. And love that you are “that kind of grandma”
will try to catch up more very soon.
my heart is with you.
Thanks, Wendy! We both need some good luck and healing energy–LOL! 😉
So very true. Sending healing energy, and much love. I just got my adrenal test back and it said I’m extremely likely to have a tumor..I was told they are usually benign, but, it’s scary.
Gentle hugs and best wishes.
This is excellent news! I am hoping and praying for relief for you. You have been through so much and I have started developing longer migraines when I do get them but I can’t even imagine weeks and months with no relief or very little relief.
I’m so happy to hear Stuart gets to stay with you and you even get to come home to a clean house! Heaven knows you are overdue for some good stuff in your life and I am sending all my love to you guys and positive energy in hopes of an outcome that finally allows you some pain relief!!
Lots of gentle hugs and safe travels!!!
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Woohoo! Hoping beyond hope for success!
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HI Great news Glad to hear it! I love Chicago enjoy !!
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Hello Wendy! I’m so happy you are going to Diamond. I used to be a patient there. Was hospitalized in their inpatient program 5 times.I’ve had tons of IV meds. I loved their biofeedback program. I highly encourage you to participate as much as possible as you will learn SO much while there. While I chose to move on to a different Chicago headache specialist after a few years, I am glad I went there as I got so much out of it knowledge-wise. I’m so glad you got Dr. Diamond – she is fabulous. Really top notch. You are in excellent hands with her. I’d be happy to chat with you about DHC or anything related to it. I’ll shoot you a text sometime soon (my # has changed).
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Wonderful! So glad to hear from you! And that you went to Diamond. I had the best feeling when I met her. I have lots of hope, maybe too much. In the back of my mind, I am a bit afraid it will be a wasted trip.
And so apprehensive of the flight. I’ve been having a lot of vertigo lately.
I am so glad you came by and commented. I look forward to hearing from you soon.
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