Fatigue Rescue?

I'm still recovering from a recent bladder infection. Those strike me from time to time and are common with wheelchair users, especially women. I have an issue with my bladder muscles not wanting to let go when I... um... GO. It's called "retention" and that also puts me at a higher risk for infection. Hey... Aren't those tulips beautiful! I thought we could all look at something pretty while talking about bodily functions.

When I'm sick my afternoon "naps" (or "curse" as I really think of it) eat up more and more of my day. Makes sense. We all need rest when we don't feel well, but I end up sleeping my life away. 

I'm excited at the prospect of something new that might help me. Epicatechin. As I said before my neurologist recommended I give it a try. It's an over the counter supplement derived from chocolate, so why not?

This is what I went with.I've had three doses now and honestly can feel a difference. I took my first dose last night and indeed it did keep me awake! I took another dose this morning with a banana and another with lunch. I feel much less tired than I normally do at this time of day. Like how I used to feel if I ate some chocolate covered espresso beans. The thought of having found something that can possibly wipe out my 2-4hr nap every day for $38.95 a month makes me excited. I hope, hope, hope this stuff really does help and I don't just acclimate to it. 

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!

Stopping Topamax

It is important to remember that even the best, most caring doctor doesn't know the whole story. Doesn't see the whole picture. They (hopefully) do their best to care for you but at the end of the day you need to be the REAL specialist, advocate, researcher for yourself.

That said, Topamax was not for me. I tried 25mg for one month. My neurologist wanted me to give it two months and I said "no thank you". I understand why he wanted me to try it for longer, but the side effects were too much for me and the benefits not enough. 

And a little advice about being a wise consumer. ALWAYS read the FDA information vs the information from the manufacturers website. Always. Just skip their website completely actually unless you're looking for a coupon or rebate.

These are my symptoms that got worse on Topamax:

• dizziness
• dry mouth
• "foggy headedness"
• forgetfulness MUCH worse
• reduced my libido even more
• wiped out my appetite.

Well, that last one wasn't bad, but for some people it could be. I was also on the very lowest dose for the very shortest time.

Both my dizziness and the migraines I think are from my brain surgery. Even though it has been a little over a year, I think the nerves are just now growing back and I'm experiencing pain and dizziness. That's my theory and I think it's pretty solid.

So far what has helped me more than the Topamax has been...

1. Taking Potassium pills at night with plenty of water. This helped with the dizziness a lot. My neurologist suggested it when I said the Topamax was making things worse.
2. Taking more Magnesium than what I was already taking. Again, recommended by my neurologist.
3. Taking the over the counter supplement called "MigreLief". Recommended by... yup. You've got it.

There's plenty of other non medicinal things I haven't tried yet. I have my first follow up on the 12th with my neurologist and I told him I'd like to discuss them.

My muscle weakness seems to have hit a homeostasis (for now... Thank GOD!) That feels nice. I'm still doing what I can but careful not to push it. My body and I feel like we're on friendly terms and that's magnificent. I think she's a lot happier now that I'm not shaving her down like a sheep in the spring every few days. Hahah!

So now onto trying new things after my two week slow reduction off Topamax. Never stop any drug all at once or without notifying your doctor.

(I received no incentives and I'm in no way affiliated with any of the links on this blog.) 

January 2020 Update

It has been a while since I checked in as far as how I'm feeling. How I'm actually doing symptom wise. What I'm trying medication wise and how things are going. So (insert drum roll please - and maybe a didgeridoo just for fun) here's a January 2020 update!

Here's the meds I'm currently taking and why

Prescription Meds

• LevoTHYROxine 125 mcg AM (taking for my hypothyroidism. I've had that for 17 years.)
• Lyrica 75 mg BID AM&PM (taking that for my stocking glove peripheral neuropathy. I've had that for 5 years since treatment for the Latent TB. Likely caused by the treatment. It keeps me from feeling like I'm being eaten alive by fire ants.)
• Cymbalta 60 mg PM (taking for joint and muscle pain. Also it helps for depression. I recently tried to wean off and was rewarded with severe pain. It's a must take.)
• Baclofen 20 mg Three times a day(TID) AM – 12 – PM (a magical pill that helps with my muscle cramps and spasms. This is a muscle relaxer commonly given to people with MS. I found it on my own after researching treatments for muscle cramps and spasms after my neurologist told me my only option was CBD. Hmmmm. Nope. The Baclofen is wonderful.)
• Topiramate 25mg BID AM&PM (This is "Topamax" that I just started for "migraines." Both my new neurologist and an ENT Dr told me I have migraines. This was suggested. It's an anti-seizure med but is supposed to work for migraines. We'll see. So for it has a lot of side effects.)

“Mito Cocktail” for Mitochondrial Myopathy

• COQ10 Enzyme 1,500 mg total daily (300mg 5x a day)
• L-Arginine 500mg daily
• Vit. D 2,000IU AM
• B-2 400mg AM
• Magnesium 360mg AM – 500mg PM
• Feverfew 100mg AM
• Wild Alaskan Fish Oil 1,400mg BID AM-PM

(The first two are amazingly helpful. I'm honestly not sure about the rest.)These are all recommended for anyone with any kind of mitochondrial issue. It's the first line of defense and often the ONLY "cure" for mitochondrial disease of any kind.
-gulp-

PRN - Take as needed

• Albuterol Inhaler PRN (apx 1x daily)(I take for asthma. I've had increasing problems with breathing last year)
• Acetaminophen 500mg +2 PRN (apx 2x per week) (I take this for pain. It works better for me than Ibuprophen) 

Yes! All those drugs are really helpful. Well, almost all of them. But what makes a world of difference for me is rest and sleep. If I get enough of it I can function ok... usually... till around noon and then I start to get tired. 

By 3pm I REALLY need a nap. Then I nap from 3 or 3:30 till 5:30 or 6. That's what my body really needs. If that doesn't happen I feel super punch drunk all day.

I like to be in bed no later than 9pm. Yup. That's WITH a giant nap. Then I sleep from around 10 till 9AM. My sleep is usually pretty interrupted with having to pee a lot and drink a lot. Even with a cool mist humidifier right by my face I have dry mouth pretty bad at night. If I'm at all sick that gets worse times a thousand for some reason. 

I stopped shaving my legs and arm pits.

Here are some recent changes I've made to make my life easier and save spoons.

I'm a pretty fuzzy chick by nature. My family didn't give me the nickname "Little Bear" for nothing. And chasing my leg and armpit hair multiple times a week was fricken exhausting. I tried everything. Regular razors. Sensitive razors. Shaving cream. Razors with shaving cream built right in. Electric razors you could take right in the shower with you (so I could use them on my shower stool). 

But hey! Being six feet tall with legs to the sky (as my pictures can attest to) that still took forever and literally all my spoons for the day. I threw in the towel at the beginning of the year. And you know what? I actually don't have as much leg hair anymore as I though. I think after so many years of shaving many of my follicles have given up the ghost.

No more coloring.

I'm also going back to my natural hair color. 

Although the henna was fun and I did have one last dance with the box dye devil... none of it is ME. It all takes time, money (something I'll get to in a minute) and is just a cultural construct of beauty that I really don't need in my life. Again, it also takes spoons that I'd rather spend on other things like time with my family, art, writing, etc.

Sticking to my budget

We have a family budget and now that we bought Pablo it's VERRRRRRRRRYYYYYYYYYYY important that I stick to it. Like 100%. As in no more buying myself a little shiny bauble. But come on... it was my birthday and they're natural sapphires, miner cut set it platinum, real vintage from England... how could I resist!?!? Well... obviously I couldn't. But that's it! Last hurrah. I'll be good now honey, I promise.

Ok, back to symptoms.

They're the same really. I'm up to the full dose on the Topamax after two weeks which is 25mg 2x a day. I feel even dizzier, more tired and out of it than before. I'm hoping that's temporary. I'm willing to give it a month because trying to be as healthy as possible is my full time job.

Even though I meet almost every criteria for a Vestibular Migraine I'm not completely convinced that's what's going on with me (despite two wonderful professionals telling me it is). Why? Because I have these symptoms all of the time. They don't "come and go" or "trigger". They only get worse and very rarely get better. 

What makes them worse is physical exertion or a major visual trigger like flashing lights or staring at contrasting vertical blinds for more than a few seconds. Rest does make it a little better, but it is never, ever "gone". 

This feeling of dizziness, foggy headedness, constant exhaustion, forgetfulness and chronic pain is why I was no longer able to work. It had nothing to do with my lack of mobility. I can always work around that with my job. But not being able to track in a conversation or having my vision blur out or suddenly being exhausted, that I can't just "work around". That was a deal breaker.

So that's where I am. I very rarely drive and if I do it's super short distances. My mood is ok. I have bouts of feeling in limbo still because my permanent disability isn't secured yet. But I am on temporary disability for 7 more months and my student loan dismissal based on disability was approved, so that's a very big deal. I do feel I'm making some progress in my life as Pablo shows. He's like my personal boat taking me off into my new future and I appreciate that a lot. 

I appreciate my family, my medical team, my good health care and insurance, my puppy, my home, my wonderful healthy food, my plants that make me smile when I see them, my delicious coffee, the lovely town I live in. I am a very lucky woman in so many ways. 

My husband is the love of my life and my best friend. I'm so lucky to wake up with him every day. So I like to notice what I have instead of what I don't and what I have is a LOT!

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.

Disability 2 months in

I've been off work for the last two months due to my disability. During that time I think I've felt every emotion humanly possible. My mother ended up moving back to my town from England (0.8 miles away from me) the week before I had to stop working. It wasn't anything planned. It just shockingly worked out that way. She has been a welcome and wonderful distraction, especially since I stopped driving the same time I stopped working. 

This also means I haven't had much time alone with my thoughts and feelings as any time I'm alone is 100% filled with being disabled. Going to or scheduling doctors appointments, ordering or picking up medications and supplements. Researching my muscle disease. Reading genetic testing results. It's exhausting.

Then of course there's actually applying for SSDI (permanent disability) and trying to rest as much as I can. At least I've mastered the "bed head".

Werk it gurl!

Unsurprisingly I was instantly rejected for disability. After spending the last 10 years in school and working for free it was expected. Their algorithm hated me the second I submitted it. No... seriously. The literal second I submitted it was denied. So now step two is to appeal and try and find a lawyer. Nothing and I mean nothing about being disabled is easy.

I applied to have my student loans dismissed since I can't earn any income right now. The letter I got back in early November said I would hear back "in 30 days." Apparently they meant 30-120 days, which I found out after a phone call and not hearing back. This is holding up my wheelchair van. No way can I take on a huge debt like that till I know I won't have to pay my student loans.

But there are some good things happening too!

The supplements I'm taking for migraines have finally started to help. I still get headaches, but less frequent and less painful. I'm also feeling less dizzy. Still foggy headed so I'm not driving but not like I'm going to spend my life in bed either (which was where I was headed around Thanksgiving.) I attribute that to starting L-Arginine back up again after a crappy medical appointment. 

I also recently purchased some L-Citrulline to try. I read this peer reviewed article about both L-Arginine and L-Citrulline being helpful for the symptoms I was experiencing. I'm also choking less and breathing easier.

And I finally got another patient advocate through my health center. She's been great about cracking skulls with my wheelchair company to get my modifications through. Hopefully soon I'll have the higher headrest and knee abductors that I've needed for Dory for a long time. Also hopefully soon I'll have a van to drive her more places.

Reading this it's easy to understand why I get so angry when people think I just lay around all day. Being an advocate for myself and just being ill is a full time job. 

I'm seeing my wonderful primary care doctor this Friday and we're going to extend my temporary leave (SSI). Then I'm taking a break from all things government till after Christmas and my birthday. 

Don't make the same mistakes

This is Plan Kick Ass - Phase 3 for a reason. My body has undergone a lot of drastic changes during this last year (even not including my brain tumor.) But I also have some tendencies that I'm trying hard to watch out for this time because they did not serve me well in the past.

1) OBSESSING about food. I'm totally an all or nothing type of person (something I'm working on.) In the past I have used food tracking apps. And I don't just USE them, but I over use them. Photographing and tracking everything that goes past my lips. This is a time suck and it has never helped me keep weight off.

Wait, Did I just eat 4 almonds or 6. DAMN!

2) OVER exercising. I actually caught myself yesterday thinking "Maybe I should get a personal trainer or try CrossFit?" Whooooo girl. Reign it in! It's one thing to "gently" push myself, it's another to go too fast and cause an injury, or a well intentioned death by tire flipping. Too much too soon.

Go rest girl

3) Trying too many things all at once. This is an easy one to fall into for me. I get super motivated for change and instead of trying one new thing at a time I do 50. I already was tempted by this one after reading about food that helps with muscle strength. I also read about needing large amounts of Folic Acid and Omegas. I though "I should go get some of those and give it a try." Note, not ONE... but THOSE... meaning all at once. "If one change is good surely 50 is even better?" Maybe, but it's also a) Expensive (and I need to save money now that I'm not working as much. And b) You can't tell WHAT it is that's helping/working when you're trying so much all at the same time. 

One change at a time

Now that I'm aware of these pitfalls I hope to avoid them moving forward. I'll likely pick up some Omegas soon to go along with my "more fish" diet. But that's easy to track.

Today's physical plan is to walk my Sweet girl again then see how I feel. If I'm up to it I'll also do some gardening. Then it's rest, rest, rest.