What I take and why

I haven't talked about my medications in a few years. In fact I've only really talked about ALL of them twice.

March 2020 post

January 2020 post

Six years into this chronically ill life and here's what I'm taking and why.

 
TD means that I take it 3 times a day

Prescriptions

1. (LevoTHYROxine) Synthroid 125mcg AM (for hypothyroidism)

2. (Pregabalin) Lyrica 150mg TD (for neuropathy)

3. (Duloxetine) Cymbalta 20mg afternoon, 60 mg PM (for muscle pain)

4. (Lioresal) Baclofen 20 mg TD (for muscle spasms)

5. Botox for migraine, every 3 months

6. (Symmetrel) Amantadine 100mg AM & 2hrs later (for fatigue & muscle problems)

7. Aimovig auto injector 70mg, monthly (for migraine)

Supplements (Mito Cocktail) helps give me more energy & helps with muscle cramps & spasms

• COQ10 300mg TD (900mg total)

• L-Arginine 500mg AM

• Vit. D3 2,000IU AM

• Potassium Citrate 99mg TD

• Magnesium Citrate 420mg TD

• Fish Oil 1,000 mg Noon

• L-Lysine 1,000mg BD (for mouth sores)

• B Complex Noon (B1 1.2mg, B2 1.3mg, B3 16mg, B6 1.7mg, B5 5mg, Folate 680mcg, 1B12 1,500mcg, D-Biotin 400mcg)

PRN taken as needed 

• (Amerge) Naratriptan 2.5mg (take at onset of migraine - migraine cocktail)

• (Compazine) Prochlorperazine 10mg (take with Naratriptan - migraine cocktail)

• Acetaminophen 500mg x2 (for pain and w/ migraine cocktail)

• Albuterol Inhaler (asthma)

• Wixela inhaler (medium asthma)

• Albuterol Nebulizer (DME) (bad asthma)

• Baclofen 20 mg (if muscle spasms increase)

• Diclofenac 1% gel (muscle pain & nerve pain)

I've been taking most of these for so long now that it's hard to remember a time that I didn't. I did the math and by the time I'm 70. So from today to when I'm 70 years old I would have spent just over 300 hours filling my pillbox. Woah. That's a lot of my life. 12 1/2 days. Almost 2 whole weeks. Just filling my pillbox.

This is what I take just in the morning alone. I'm lucky that I don't have more problems swallowing pills. I'm also lucky that everything I take is helpful. I have it pretty dialed in at this point as far as dosing goes and where to find the best deals on my supplements. 

I think of my medication like my glasses. I can't function without them and my world is so much better with them. I'm grateful for my excellent medical team who helped me come up with the right things to take. 

Brain Fog

There are many symptoms that go along with my mitochondrial myopathy, but one that I find to be rarely discussed is brain fog and short term memory issues. It's one of the many reasons I can't work anymore at the job I used to do.

"The highest concentration of mitochondria are in the nervous system, brain system, and the spinal cord. For this reason, the most commonly experienced symptoms are of a low functioning brain or nervous system. This might present as brain fog, memory issues, poor concentration, mood swings, and sleep challenges."

Or even more cheerful news...

"The symptoms of mitochondrial myopathies include muscle weakness or exercise intolerance, heart failure or rhythm disturbances, dementia, movement disorders, stroke-like episodes, deafness, blindness, droopy eyelids, limited mobility of the eyes, vomiting, and seizures." (from NIH)

My migraines can also cause some memory issues, so I unfortunately get a double whammy. My memory becomes much worse as my body symptoms increase. This means if I'm battling an illness or even just having an asthma flair because of the weather, my brain becomes very "foggy." This is the perfect word because I do feel like I'm behind a fog. Like I'm a few drinks in (which is one of the reasons I don't drink alcohol).

My auditory memory is especially affected. Recall of recent things (working memory) is very challenging for me when I'm feeling this way (like right now. Thanks crappy air quality!) My family are all aware of this challenge for me and are sweet and patient. My grandmother suffers from severe dementia, so this is a very scary symptom for me.

Like all of my symptoms there seems to be very little that I can do about it. I take my supplements and push through regardless. Since it is an invisible symptom though it can be hard for me and the people who love me to remember and address. I can get quizzical looks of disbelief when I can't remember something very simple, even from my family. It's understandable. I'm young(ish) and "shouldn't be having challenges like this." But it is a part of my muscle disease and I have to remember to be kind to myself when it happens. That's something I still find challenging. 

Thank you to this girl on Instagram who talked openly about her memory problems with her Mitochondrial Disease today. It's always helpful for me to find others who have similar challenges. 

What's New?

This time last year I was responding well to my Mito Cocktail. I had a real increase in energy and stamina. I suspect what happened with the Mito Cocktail is that my body just adjusted to it and it stopped working as well. 

That happens to everyone with almost all medications, even recreational drugs. I'm no longer taking the Idebeone. I tried it for three weeks and it didn't work for me. I had an increase in cramping, spasms and muscle pain, plus it upset my stomach. So two weeks ago I went back to my COQ10 and I feel like I'm still adjusting.

I continue to be less fearful than a year ago and am still rocking a bikini. I also take care of my "tasks of daily living" independently. I even made a quick store trip with my son yesterday, just the two of us. That felt really good.

As far as medications go, here's what I'm currently taking:

Prescriptions Taking

LevoTHYROxine 125 mcg AM

(Pregabalin) Lyrica 150 mg BID

(Duloxetine) Cymbalta 60 mg PM

(Lioresal) Baclofen 20 mg TID

Albuterol Inhaler PRN (apx 6 puffs spread out daily)

PRN

Acetaminophen 500mg +2 PRN

(Rizatriptan) Maxalt-MLT 10mg PRN

Albuterol Nebulizer (DME) PRN (not used yet)

5:1 (CBD:THC) Tincture or Edible PRN

Supplements

COQ10 300mg 5x a day (1,500mg total)

L-Arginine 500mg AM

Vit. D3 2,000IU AM

Wild Alaskan Fish Oil 1,400mg BID AM/PM

Biotin 1,000mcg AM

Magnesium Citrate 250mg BID AM/PM
Potassium 99mg BID AM/PM

MigreLief supplement BID AM/PM

B-2 400mg

Magnesium (citrate and oxide) 360mg

Feverfew (whole leaf & extract) 100mg

I have a fantastic A Team behind me now including multiple people who know about Metabolic/Mitochondrial Myopathy. My neuro muscular specialist just suggested I try epicatechin to see if it helps my muscles at all. She said there's some good results with it helping protect the heart of people with MD. I will give it a try since it's an over the counter supplement.

She also reminded me about the muscular benefits of Epsom Salt Baths. It's not easy for me to get in and out of the tub, but it is possible. I will try and add these to my regular routine as well. We have a big bag of it from Costco.

The biggest news for this month is I got adjustments for my big chair "Dory". I got a new seat, new headreast and (*insert drum roll here*) KNEE ABDUCTORS! That's a huge deal. No more leg straps for me!

Also fantastic is that she's on a bit of a tilt back so I don't slump over myself when my trunk muscles fatigue. Stamina is not my friend.

"But what about Plan Kick Ass?" 

I've integrated a lot of it into my daily life. I try and eat more fish and veg then I do land animals. I move as much as I can and in general make my health a priority. Of course I still have things that aren't the best for me, but I try and notice how food makes me feel after I eat and stick to the things that make me feel good.

Here's some things I'd like to change, work on for the future:

• Stretch twice daily
• Take Epsom Salt baths
• Try the epichatechin
• Explore CBD more
• Go back to smoothies every morning

Lastly what's new with me is that I'm trying some high CBD, low THC products to help with pain and muscle cramps/spasms issues. I don't like taking Acetaminophen for pain all of the time and I don't think it honestly helps that much anyway. It's hard on my liver and kidneys and can cause stomach irritation if I take it too often. I feel there's less of a physical risk to my health taking a more natural product. So far I have tried oils, tinctures and gummies. It's legal in my state and very available. I'm open to trying almost anything that could improve my quality of life.

So that's where I'm at medically right now. Taking things day by day and focusing on the positive. I'm keeping connected with my friends from my Muscular Dystrophy support group and family. That's always helpful for keeping my mood up. And my mom has been stuffing me full of delicious foods. I try and get outside to get some sunshine when I can. Now I'm off to make a smoothie!

I Keep Trying!

Throughout my multiple challenges and conditions I've (almost) always remained hopeful. I'm hopeful that whatever newest, latest thing I'm trying will help ease at least some of my symptoms. Sometimes it does, most of the time it doesn't. Here's some of the million things I've tried, why I tried it and what the outcome was.

Keeping Hope Alive

• CoQ10 1,500mg Daily - This was the first thing I ever took that helped with my muscle myopathy. I've done a lot of tweaking to find the right dose that helped my fatigue and strength. This is the sweet spot for me. I take one 300mg pill 5 times a day through the whole day. It did take about 3 months to notice any difference.
• L-Arginine 500mg - Part of the "mito cocktail" along with CoQ10, this is commonly recommended for people with Mitochondrial Myopathy. At first this didn't do a thing for me. But a year later I tried it again and WHAM! It really helps with my dizziness and fatigue. I take it once in the morning. More than that gave me insomnia. I noticed the helpful effects immediately when I began taking it again a month ago.
• Carnitine - We called it "carnitor" in our house as a joke. It didn't help and it upset my stomach, but it can help others with a mito disease. 
• L-Citrulline 750mg - Something new I'm trying. I read in a scientific study that it was more effective than Arginine for some people with myopathy. I'm not noticing a difference yet but I'll try the whole big bottle.

• PT - Physical therapy did squat for me. In fact it was harmful and pushed me too hard. I tried it for joint and muscle pain and to try and increase my range of motion. What DID help instead was doing gentle stretching on my own, especially in the morning when I wake up.
• SLP - Speech therapy was helpful, but my symptoms had improved a bit from the Arginine by the time I got in. I have a Barium Swallow Test coming up in February and depending on those results I may go back. She also gave me some cognitive exercises to do that I found useful.
• Magnesium - I find it useful for stiff, painful muscles. I take it daily and if really bad I try and take an Epsom Salt Bath. 
• Ibuprophen 800mg - Prescribed for inflammation I get little to no relief from it so I don't take it.
• Acetaminophen 500mg - I take 2 (1,000 mg) if my muscle and joint pain gets too bad. This is very effective for me. For night pain I take Acetaminophen PM about once a month. 

• Pushing my muscles with a lot of activity - Didn't help. Did hurt. Can cause the serious medical condition called Rhabdomyolysis (and yes, I've given myself this from pushing too hard). I tried it to see if I could "push through the weakness" because I read that works for some people. Not for me though! 
• Not getting enough activity - Resting to much from fear of muscle destruction just caused an increase in my cramps and spasms (not to mention weight).
• Baclofen - This has been a life saver and greatly reduced my cramps and spasms. It's a muscle relaxer that I found on my own by doing research. It's commonly given to people with MS. Luckily my doctor agreed to let me try it. It hugely improved my quality of life!
• Lyrica - I used to wake up crying from pain at night caused by my peripheral neuropathy. I thought my only hope was Gabapentin (which DID NOT WORK and I had a bad reaction to). Then my doctor tried me on Lyrica and POOF! My neuropathic pain was gone.
• Cymbalta - I've been on this for over a year for muscle and joint pain. A side benefit is it also helps with depression. I call that a win-win-win. I did have to adjust to it. It made me very foggy headed at first. But I'm very glad I "toughed it out". My pain is unbearable without it, just like with the Lyrica. 

• Plaqenil - I was given this for rheumatoid arthritis symptoms (that I now suspect might just have been the mito myopathy in disguise). It's an autoimmune suppressor that may or may not have been one of the contributing factors of my muscle weakness suddenly coming on so severely. Needless to say, it didn't work for me. 
• Naps - It always feels like a battery recharge. My cognitive functioning and muscles typically both improve with rest. I try and get a nap in every day. 
• Blue Light Blocking Glasses - Recommended by both my new neurologist and ENT for migraines (which I shockingly, apparently have). You can get them cheap online and they have made a big difference. They reduce my headache intensity and frequency and reduce my dizziness. 
• Hepa Air Filters - I credit these to my overall pretty good health while working. I would be in a small room with a lot of people who sometimes were sick. I usually would catch things at home and not at work. Now I have one at home too!

My current plan is to see if the Migrelief was helpful or not. I try and test things when I run out of them. I've also only been taking the L-Citrulline for a few weeks now so I'm giving that a chance. No difference yet. I read last night about how BCAA (an amino acid compound) taken orally can help with muscle strength, endurance, pain and recovery. I ordered this one not mixed with other crap to try in a morning smoothie in a few weeks. 

On this journey I have learned that I have to be the expert in my health. I know my symptoms better than anyone. I also need to clearly communicate with my health team about what I need and how they can help me. I need to trust myself, but also my doctors. If something helps I keep it. If it doesn't I move on to the next thing. I haven't run out of stuff to try yet and I don't think I will anytime soon. Though swimming with dolphins is something I'd definitely skip. 

I am not affiliated with any product linked, nor did I receive any kick back for endorsement.