My Body

My illness has a few different names, but they all mean the same thing. Mitochondrial Myopathy, Mitochondrial Dysfunction and Mitochondrial Disease. My neurologist explained the differences just refer to severity with "disease" being the most severe. Here's a tiny bit about what I struggle with. 

What are mitochondrial myopathies?

Mitochondrial diseases are caused by defects in mitochondria, which are energy factories found inside almost all the cells in the body. Mitochondrial diseases that cause prominent muscular problems are called mitochondrial myopathies ("myo" means muscle and "pathos "means disease), while mitochondrial diseases that causes both prominent muscular and neurological problems are called mitochondrial encephalomyopathies (encephalo refers to the brain).

A typical human cell relies on hundreds of mitochondria to meet its energy needs. The symptoms of mitochondrial disease vary, because a person can have a unique mixture of healthy and defective mitochondria, with a unique distribution in the body.  In most cases, mitochondrial disease is a multisystem disorder affecting more than one type of cell, tissue, or organ.

My challenges appear as severe fatigue, brain fog and muscle weakness in my entire body. I also struggle with cramps, spasms and constant severe pain. These are all of the reasons why I can no longer work. Yes... even a little (a question I get a lot.) "Can't you just?" NO!!!

I've had this diagnosis for five years now. In that time my muscles have become progressively weaker.

On top of my mitochondrial disease ravaging my body, I have severe head problems. "Intractable migraine" and "neuralgia" (occipital and temporal). Icepick migraines can come and visit me too. They feel just how they sound. No one flat out said as much, but I expect these are all after effects from my brain surgery in 2018. I certainly never had any of these symptoms before.

So that's my body in a nutshell. All of these issues have combined to turn me into an incredibly mindful person. I fully live in each and every moment (that I'm awake). I also actively look for the beauty and joy that is everywhere to keep me going. These coping mechanisms are incredibly effective. Well, that and a lot of drugs and medical treatments.

The down side of is I struggle to plan into the future. Not intentionally. Not in a depressed way. But like my brain is too Zen and tuned in to what I'm doing in the now. It can make even little things like what to eat or watch on TV impossible for me to decide. It's a strange feeling. Maybe my brain is simply busy coping with the war raging in my body.

My Migraine

No... "Migraine" is much too small a word for what daemon has wrecked my life. The clinical term might be "migraine" but it's more like an evil possession.

Some of my current diagnosis

My muscle disease affects my body, but the migraines rob me of much more. Most days I feel like a shell... a ghost of my former self. It robs me of my memory, my attention, my eyes focusing, trusting what I'm seeing. It causes me stabbing pain, electric shocks, ear ringing, momentary hearing loss, throbbing pain, visual hallucinations and a general feeling of being really drunk or really high without ingesting anything.

Personally I think all of this is a side effect of my brain surgery on September 27th, 2018 (28 months ago). I read that nerve re-growth and associated issues can take around five years to heal. I would have proceeded with surgery anyway, but I wish someone would have gone over the side effects and talked to me about migraines.

My entire life I've infrequently had very minor headaches. I'd pop a few Excedrine and off it went. I knew people who struggled with migraines, but I thought it was just a super bad headache that maybe caused some nausea, light, sound and scent sensitivity and would last about 24hours. At best I feel like I knew a little bit more than the average person.

But when my migraine symptoms began it wasn't with any of that. I'd have a little headache behind my forehead. Just a tiny one. My symptoms started with feeling very dizzy. I felt like I was hearing myself talking from another room when I'd speak and hearing others talk I felt very far away. That's a big problem for a therapist. I was scared and had no idea what was going on. 

I quickly became too dizzy to safely drive. My husband began taking me to work. After that I could "hang in there" till lunch time, but the symptoms just got worse. With it came the crushing fatigue. I wasn't just tired, I was completely exhausted. It felt a little bit like a horrible hangover.

The headaches began getting a bit worse, but the other symptoms increased quickly. I started to have trouble focusing, both mentally and physically. My eyes would go blurry, like I couldn't physically focus. Of course I still had my muscle issues as well. The worse my migraine symptoms became the weaker my other muscles were. Soon work was ordering me a text to type program for my files as I lacked the physical stamina to type for any length of time. But nothing helped and I became too compromised to work at all.

I had no idea what was going on. I talked to my primary care doctor, crying in his office. He sent me to a neurologist and an ear, nose throat doctor (otolaryngologist). Both of them diagnosed me with migraines right away. I kept arguing that it couldn't be migraines as my headaches "weren't that bad!" I had no idea that migraines take many shapes for different people with an enormous list of effects. I sure know that now!

Every... single... day I struggle with nightmarish symptoms.

I can't work.

Some days I can't even leave my house.

I'm proud of myself for getting out of bed, dressing and showering.

A big part of my life has been reduced to that of a small child.

I have a lot of feelings about that.

Grief

Loss

Anger

Sadness

Fear

My current treatment regimen involves:

• 32 Botox injections around my head and neck every three months.
• Monthly Emgality injection.
• A cocktail of Procholorperazine 5mg (for dizziness and nausea), Naratriptan 2.5mg and 2 Acetamenophin 500mg taken together as needed (but no more than three times a week).

These all help a little.

I'm still not myself though. 

Still unable to do very much.

The worse my migraines are the more exhausted I am and the weaker. It's a nasty cycle. I'm hoping something will click soon to cause a massive improvement or they will heal and go away completely. That would be wonderful!

Until then I sometimes struggle to feel my worth. It takes a lot of intention and attention to really live in the moment. Not let each one slide by in a fog. I do have a beautiful life and I don't want to miss out on any of it.

Botox Injections for Migraines - Take 2!

I FINALLY got to have my second round of Botox injections. The first round went very well, even though it took almost a month for me to notice a difference. My neurologist said that I have to wait the full 90 days both because of insurance and because of research showing any sooner than that could be dangerous. Damn.

It went well, though I think I got more shots than last time. My husband lost count and I forgot to ask. I know she was doing a bit larger dose in some specific areas. I have the most problems with my left side (no surprise since that's where my plates are from my brain surgery.) 

It did feel a little more painful than last time, but it's also hard to remember from three months ago. I ended up coming down with a raging migraine and my head feeling like it had been stung all over by bees, but it's all worth it if I can get the same relief (or more) than last time. 

Funnily enough I can live with the migraines, it's the chronic vertigo that did me in. Also the "Alice in Wonderland Syndrome." Vestibular migraines are no joke.

With my Metabolic/Mitochondrial myopathy I have learned that anything can set my body off. I become very sore, very stiff and have an incredibly dry mouth during the night. When these things happen I know something is "off" with my body and I need to just rest. That's what happened yesterday after the shots. I came home and crashed out for almost six hours. Then woke up every hour last night in terrible pain and with serious dry mouth. 

Today is also a rest day.

No shame in listening to your body!

Mine speaks a whole language all her own, but it's one I'm slowly learning.

Curious to read more about Botox for migraines? Click here (no affiliation).

Botox Trial Begins

Yesterday was my first round of 32 shots to see if it will help my migraine symptoms. Specifically I'm hoping to get relief from my constant dizziness, fatigue and headaches. The shots were all around the crown of my head and two in each shoulder. They stung a bit, but it wasn't awful (though I also have many tattoos.)

I was very concerned about the potential side effects listed on the Botox site, but my neurologist is a migraine specialist and does these all the time. She assured me that they have to list every side effect for every use, not just for migraines. The side effects sound scary... but I'm not having the shots in my chest so I should be fine. So far (24hrs later) I've had a headache, minor soreness, tenderness and stinging. 

No washing your hair or rubbing your head for 24hrs, then when you do wash, do it gently. I made the mistake of towel drying my hair after. Ouch! Don't do that next time. Lesson learned.

My doctor said it could work as fast as one week, or take as long as six months. I will go back in three months to do the whole thing all over again. 

I told my husband on the way home yesterday that I really admire my optimistic nature. Even after everything I've been through and only about 15% of things I try helping, I remain hopeful. Hopeful enough to get 32 pokes in the head, cross my fingers and wish it will help.

Neurologist to the Rescue!

Making funny faces while I still can.
Till I gave myself a headache.

Today was my three month check in with my new neurologist. This time I came armed with the three topics I wanted to cover.

1. Dizziness
2. Headaches
3. Massive Exhaustion Daily 12-3PM

After doing research I'd come around and agreed that the migraine symptoms I was experiencing for the last seven months or so were likely being caused by neuromas from my brain surgery. Nerves that get trapped in scar tissue and cause pain. Both the ENT and my neurologist said "Yes, they are migraines. That's why you're dizzy". Got it. Now we're all on the same page. NOT caused my my Metabolic Myopathy at all. 

The appointment went well and we have a new plan of attack. We're going to try Botox to see if we can get the muscles to relax and the nerves to stop sending pain signals. My neurologist said that's important to do as fast as we can because otherwise the body "learns the pain and it won't stop". (((GULP!)))

So onto insurance who must approve this treatment (because this is America and insurance companies know better than doctors here), then onto another neurologist who does the injections. Then I have to wait to see if it worked or not. I was told it might not work the first few times and each time I have to wait three months. Soooo... (breaking out the calculator) IF my insurance company approves it ASAP it could still be at least another month before I even get to try it and up to six months for it to work at all. IF it does work. 

My version of "fast" and medical "fast" are two VERY VERY different things. I really must keep that in mind. 

As far as non medical interventions, he approved the use of my home Tens Machine on my head (despite my husband's fear that I would fry my brain with the titanium plates in my head a la' Frankenstein's Monster). I also have this beautiful new cold pack cap to try out (I think I saw it on Project Runway?) And something called Sea Bands.

The Sea Bands are a recent addition to my arsenal and have been shockingly helpful with my dizziness. I read a review by a woman with migraine induced vertigo who swore by them, remembered we owned a pair, tried them out and WOW! Well... half a day later... WOW! They are really helping me.

As far as the exhaustion that happens daily, the neurologist said that it could be explained by something called a "Migraine let down effect". The symptoms he described were very much what I go through every day around 12-3PM. Exhaustion, blurred vision, mental fog, weakened muscles. He even used the analogy I use "It feels like you ran a marathon". He suspects that taking care of the migraine might also (hopefully) eliminate this daily ritual as well. 

I'm feeling good with where my neurologist and I left off. I really like him a lot. I think he's my sixth? I'm glad I didn't give up and my PCP encouraged me to go back to the neurology clinic. 

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.) 

Never a dull moment!

A few days ago an acquaintance said to me "You must get so bored sitting around all day. What DO you DO?" Once I got over my shock and the urge to smack her I took a breath and explained. "I am disabled. I have a chronic illness. This means I am always sick. I spend a lot of my time resting and I feel too ill to get bored". Although that is true, my days are also quite busy!

Here's what I had going on just this week:

My genetic testing kit came and my mother and I did it together. It took a few hours to register, answer questions and spit in a tube (surprisingly hard!)

It's rare that a week goes by that I don't have some kind of medical appointment. I saw the ENT the other day who confirmed I'm suffering from migraines and they believe that's the cause of my dizziness and foggy headedness. Good to know! Now on to treatment.

My mother drove us a little over an hour away to meet a friend for a delicious seafood feast. I had a headache the entire day, but I didn't let it stop me from having fun! The ocean air was rejuvenating and the view of San Fransisco was breathtaking. 

I get easily impatient with my hair and hate what I call the "Soccer Mom" phase of growing out a pixie. So I gave myself some baby bangs just for fun.

After both the neurologist and the ENT said I'm suffering from migraines (vestibular and intractable) I decided to try these "anti migraine glasses". They are a rose tint and are supposed to block out particular light that can cause migraines. I didn't think that they were working, but then I took them off to shower. When I got out I could tell my headache was MUCH worse. Back on they went and I can feel my headache easing. So weird! 

I think I have a very high pain threshold and so much other physical stuff going on that it never would have occurred to me that I had migraines. 

I'm also trying to gently get back into doing a little gardening. I find it very therapeutic and it keeps me eating healthy. My mom just bought me this beautiful cedar raised bed so I can easily garden while sitting, It's the perfect amount that I can manage. I'm hoping to get some herbs and lettuces for winter going soon. 

So no. I'm not "bored". I still sleep in, rest, take naps and try to go slow. But I keep both mentally and physically as active as I can and I'm always seeking out new tools to improve my quality of life.

(I received no incentive, kickback, discount or payment for ANY of my links.)