Wednesday, Sept 13, 2023
I had an MRI on Monday which showed there isn't anything wrong inside my brain. No growths, lesions, or abnormal findings that the radiologist could identify.
Although I am incredibly relieved, I am also frustrated. Its hard to get my mind around the fact that I could have THIS much head pain and nothing is wrong in there. Its so confusing to me. I'd like to find a problem and fix it. That is always my hope.
I still have an appt with a neurologist in October, so hopefully that person will help me find answers that will guide me toward less pain.
Friday, Sept 8, 2023
I've had three low-pain days in a row. And two of those without any meds. One day, I went out thrift shopping and, on another. I went for a walk.
There are other symptoms that are causing some discomfort and they are:
- constant tinnitus in my left ear
- high heart rate whenever I go from laying/sitting to standing
- losing my words (I am having troubles remember the names of nouns and verbs)
- nerve discomfort in my hands
So, I am pretty much feeling like hot trash. But hey, the pain is almost gone and so I am thanking my lucky start to just have a break from that. I feel like I can deal with all sorts of discomfort in comparison to constant, unrelenting head pain.
I've been itching to work in my studio and make something amazing. I knew the piece I wanted to work on. The crown jewel of the amber collection. Which is a huge piece of high-grade turquoise surrounded by itty bitty amber teardrops. And it will require absolutely concentration.
Since I am feeling better, I've started it. And hope to get it finished before anymore migraines come my way.
Tuesday Sept 5, 2023
Today I have a headache, and dealing with annoying tinnitus, having a lot of scalp parasthesia, and have a case of the dum-dums. I packed up all the orders from the weekend then came back inside the house to send a message to my doctor about my upcoming MRI which I am quite nervous about. Because it includes a contrast material being injected into my blood stream, which leads to a few off-putting symptoms, I am worried I will have a panic attack. So I am considering taking Lorazapam prior to the appointment to keep myself calm.
I've been wearing a Zio Patch all weekend so that maybe my doctor will be able to understand my experiences with high heart rate when I am doing nothing more than standing up from a seated position. My symptoms were pretty bad on Saturday, began to settle down on Sunday, and are much better today.
I don't know what type of work I am going to do today. I'd like to make a pretty piece of jewelry, but just feel like hot trash. I am trying not to take my meds and its hard to work when my pain is this high. I am going to go out to my studio and see what happens.
Friday, Sept 1, 2023
I am still working slowly and inconsistently. Yesterday I had to take meds twice and stay in bed all day. Today, I woke to more pain and had to take meds again.
My doctor filled my scripts for Hydrocodone and Sumatriptan injections so Doug is on his way to get those. My doc also asked me if I'd heard anything about the MRI. Since I hadn't, I called the hospital. They told me they hadn't received it and to call my doc. I called my doctors main admin line and they told me the referral had went through and they'd leave a message with the hospital to get me scheduled. So I called the hospital back and asked the person in scheduling to go find my referral. She did and got me in for a Brain MRI on September 11.
I don't like to be a squeeky wheel and sometimes that is to my detriment. I guess I need to follow up on this stuff more often.
Today I am going to go out to my studio and do photography while my head is decent. After having a 6/10 migraine, I took my meds and am now a 3/10. So that should allow me to do some work for a while.
Here is the pain chart I use:
I've been really surprised how everyone has reacted to my open and honest accounts of migraine. I have received direct messages and really thoughtful comments when I share stories about my daily living. It feels supporting and that is comforting due to my nervousness about not working like I usually do.
I've also had people un-follow me. Which makes me wonder why. Perhaps they just are NOT interested in hearing any of my personal stuff. And that's okay. But it does feel a little bad.
Monday, Aug 28, 2023
I woke to tinnitus, sound sensitivity, and head pain today. Sound sensitivity is a common symptom of migraine* and it's gotten worse as I've grown older. It reminded me I should get some ear plugs for when I am in my house. I have noise cancelling earbuds for when I am working, but having some smaller ones for when I am in the house and Doug is doing dishes would be so helpful. I am currently looking at Loop ear plugs.
My head pain is low and I'll be working in my studio today.
* Ishikawa, T., Tatsumoto, M., Maki, K., Mitsui, M., Hasegawa, H., & Hirata, K. (2019). Identification of Everyday Sounds Perceived as Noise by Migraine Patients. Internal Medicine, 58(11), 1565-1572. https://doi.org/10.2169/internalmedicine.2206-18
26 August 2023
My blood test results came back. My thyroid function appears normal, and the only abnormality on my Complete Blood Count was low potassium. And that was low the last time I had a CBC as well.
I looked up the *causes of low potassium, but nothing on the list really seems to fit. Then I looked up the link between migraine and low potassium, and there was some information out there, but nothing to directly link the two.
I know electrolytes all work together and I know I don't consume enough salt so my plan is to hunt down some really good sea salt, maybe Redmond's.
Someone suggested I make Sole water, So I went to the Richmond's Salt website and here is how its made.
I may just add fine salt to water. I'm not really sure of the pro's and con's of either. I did end up ordering some Fine Sea Salt tho.
I also finally made an actual appointment with the naturopath. I've been trying for like a month. I guess I didn't understand her intake process. But next Wednesday is the day.
I will also talk to my primary care physician about how to increase my potassium levels.
Today, I am in bed, as I woke with a bad migraine. It's sunny outside and mild and I really wish I could just go to the farmer's market.
* Kardalas, E., Paschou, S. A., Anagnostis, P., Muscogiuri, G., Siasos, G., & Vryonidou, A. (2018). Hypokalemia: A clinical update. Endocrine Connections, 7(4), R135. https://doi.org/10.1530/EC-18-0109
Friday Aug 25 2023
I saw my doctor on Wednesday and discontinued the salt so my test results wouldn't be skewed. I passed the orthostatic blood pressure test and had a normal ECG. They took blood to check my thyroid and other organs, but I suspect all will be normal.
Because I halted the salt, I think, my headache grew and grew. I ended up in bed yesterday from like 11am all the way till 8pm. I felt exhausted. This morning I woke to pain and it continued to grow. When Doug came up to pet my head, I looked up and him and tears spilled from the corners of my eyes. He wiped them and asked what was going on . I told him I was in pain and he went and got my Imitrex and hypodermic needles and told me to give myself a shot.
I didn't want to, but I did. And the pain was gone within 5-10 minutes.
Then I started back on my salt in hopes that was helping. My son reached out to tell me about the link between sodium and migraine and since I get VERY LITTLE sodium in my whole foods diet, I've been adding it. *Some studies support it.
It's been 5 hours since my injection and my head is starting to tingle again. Which probably means the pain is going to come back. When it does, I will rest.
I have lost more weight today and wonder when it will stop dropping. That happened last time my migraines became intractable, so I am not surprised. I've been adding coconut oil and eating fatty nuts to try and curb the loss.
*Pogoda, J. M., Gross, N. B., Arakaki, X., Fonteh, A. N., Cowan, R. P., & Harrington, M. G. (2016). Severe Headache or Migraine History Is Inversely Correlated With Dietary Sodium Intake: NHANES 1999–2004. Headache, 56(4), 688-698. https://doi.org/10.1111/head.12792
Tuesday, Aug 22 2023
After receiving many breadcrumbs leading me to study how sodium effects POTs, I started adding 1/4 teaspoon to a bit of warm water and slugging it back, followed by copious amounts of water over an hour or two. Then doing it over and over again all day.
Coincidence or not, I am out of bed; have very little dizziness; don't feel as badly when my heart rate jumps; and my head pain has not been rising to last week's levels. I also noticed my Heart Rate Variability (HRV) suddenly went from the 40s to around 115. That is supposed to be a good thing. And its never happened before. Here is a picture of my HRV over the past 6 months.
That sudden spike there? That is what happened to my heart rate variability after adding daily salt. I have a doc appt tomorrow and I'll ask her about this.
Other things I'm looking into today:
- Trigeminal Neuralgia
- Infusion Therapy
- How diaphragmatic breathing stimulates the parasympathetic nervous system.
- Other people's experiences with POTs
Here is my plan to manage my pain and high heart rate today:
- ingest 1/4 tsp salt every 3 hours
- drink water all day
- do yoga
- eat only whole foods (fruit, vegetables, seeds, meat)
- eliminate all histamine and tyramine from my diet
- drink only 1 caffeinated beverages
- keep my day free of stress and stop working if I feet poorly
Monday Aug 21 2023
Woke feeling better than I have in a long while. Small headache but no dizziness. I suspect it was the salt I added to my diet. And perhaps my low histamine diet is finally working. I'll give it a few more days to see. Later in the morning by headache grew again, so I took more salt and plan on drinking a lot of water. I looked into Liquid IV but didn't like the dextrose in the ingredients. I may go with LMNT soon.
Sunday, Aug 20, 2023
Today I woke up to dizziness that flirted with full-blown vertigo. After I drank a lot of water and took 1/4 teaspoon of salt, I started to feel better. I still have a mild headache and feel a lot of pressure in my temples. I am resting on my couch right now, drinking roasted dandelion root tea in an effort to soothe my nerves and encourage my liver to detox. I've been losing weight, so I don't want the by-products of that lingering in my system.
I stopped working out about a month and a half ago, but after reading an article by the University of Wisconsin, I realized that exercise is one the most important things I can do to reduce my symptoms of POTs.
So today, I got on my stationary bike for the first time in a long while. I completed a 5-minute workout, followed by a 5-minute stretch. Afterward, I slipped on a pair of compression shorts in hopes it will help keep my blood where it belongs (another suggestion of the article).
I plan on resting today, but I have work on my mind. I think I have three orders to send out, and hope I feel good enough tomorrow to get them packed and on their way easily.
I also really want to get off this couch and make a low histamine breakfast bread, like a waffle or zucchini bread. I found a great website that has helped alot called Low Histamine Eats. If I start feeling better, I'm going to do that.