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.

Same Symptoms, Different Day

I used to keep a running list of my symptoms and share them with all of my medical providers at each appointment. This was helpful in the beginning because we had no idea what was wrong with me. When I started the quest for a diagnosis it was 2018 (2 years ago) and we were thinking it could be rheumatoid arthritis? An autoimmune disease? All I knew was I had a lot of pain that left me crying at night.

What it turned out to be was:

• Stocking glove pattern neuropathy
• Benign brain tumor
• Metabolic/Mitochondrial Myopathy

I also had a complete hysterectomy in 2015 due to major reproductive health issues.

I assumed at the time that my problems were mostly neuropathy (that I believed was caused by my Latent TB treatment the year before) and autoimmune. My symptoms were all pointing to RA being the main culprit. But then the sudden muscle weakness hit. From one day to the next I suddenly lost about 80% of my strength.

It took a very long time and many referrals to solve the riddle of my muscle weakness. The current consensus is that my mitochondrial cells (the power cells of the body) don't process energy correctly. I have 3 genetic mutations that have been identified that could be the cause. All of this is pretty new science so everyone is really just doing their "best guess." I've learned to be the expert in me.

Unfortunately either the brain surgery that I had in 2018 or my Mitochondrial Myopathy have cause me to also suffer from Vestibular Migraines. Shockingly these have been more crippling than my myopathy. So if you're keeping track it's:

• Vestibular Migraines
• Metabolic/Mitochondrial Myopathy
• Stocking glove pattern neuropathy
• Osteoarthritis (and possibly RA)

It's been about a year since I posted my symptoms. I also don't really keep track of them anymore. There's a few reasons for this. 

1) I'm tired of talking about it, looking at it and only being a "sick person."
2) My symptoms haven't really changed.
3) It's more useful to alert my healthcare team about NEW things if/when they come up.
3) New symptoms can get buried under my massive list of health issues and get overlooked by my doctors.
4) I have a great team who keeps good records of my health diagnosis, visits and concerns so it's a bit redundant at this point.

Rather than bringing in a list of symptoms with me now to an appointment, I bring specific concerns and/or questions that I have. I always take notes and I very very rarely go alone. This helps make sure I don't miss anything (as my memory can be a serious issue).

When I look at the list of my past symptoms I still have all of them. However, I also have treatment that helps me manage them. I feel positive that I will soon have treatments in place to help 100% of my symptoms be bearable.

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!

What do I do?

I'm feeling worse every day. Both my muscle weakness and this horrid dizziness! Today I bought some Claritin as a last ditch effort to try and "solve" it myself. I think it's part of the myopathy, but I'm not against trying everything I can first. Literally the last thing I can think of is that it's allergies and my body is just having a two year old volcanic meltdown.

That would give anyone allergies, right?

What makes the dizziness better is sleep. What makes it worse is everything. My doctor is sending me to an ENT to rule out any kind of vestibular issue. Like I said... I'm open to anything. I even called Radiology today to see if they had any cancellations and could get me in for by brain MRI sooner than 11 days. Not that 11 days is that far off, but I seriously feel like each day is a big deal.

Remember The Hunger when David Bowie's character starts aging instantly? He finds Susan Sarandon, a specialist in aging, and tries to talk to her but she leaves him out in the waiting room. A few hours later when she comes back he's aged like another 40 years. Yeah... it feels like that. 

I know how you feel David. 

Along with the dizziness my muscles are getting worse. I feel a sense of urgency I haven't felt in a while. Each time I do something I wonder "Is this the last time I'll be able to do this?" I put something away in the garage today and randomly fell down. It was pretty scary.

So "what do I do?" What do I do when each day I feel worse? When I have to wait and wait for each doctors appointment and for answers that are few and far between? My insurance declined our appeal for the full genome sequencing that might have shown some helpful mutation. Or maybe not. Now we're waiting for new insurance to re-apply. So what do I do every day?

I get up. I do what I can. I skip what I can't. I ask for help when I need it. I keep calling doctors. 

SSDI is looking like it might be in the near future. 

I miss my work. I miss my old life. Today is just a "poor me" day and that's ok too. Tomorrow will be better. I hope. 

Symptom Update

Time is going by quickly and I'm beginning to learn a lot about my body. What it can do (more than I thought) and what it can't. Where I can push myself a little bit and where I really can't (like naps are a MUST!)

I've learned that if I'm getting sick in any way, my body just shuts down. I need to talk to my PCP about the whole "muscles don't want to work my lungs" thing and see if there's anything that can help with that. It's a horrible feeling. Fortunately it's usually only there if I'm sick or getting sick. 

I've also learned that working three days a week is way more doable than four. I was seriously pushing myself nowhere good working four. Every day I don't work I nap mid-way through. That also helps me in a massive way. I wake up refreshed with energy levels restored. 

To recap on medical progress (or lack of.) 
My neurologist has retired and I wasn't assigned a new one. That's fine with me as I feel that train has gone as far as it's going to go. Every specialist in my network seems to only work on days that I work and I can't take time off every week now that I'm down to a three day work week. Unless magical mermaids decide to pay off all my student loans for me. That would be great. So no neurologist right now.

Opthomologist said I'm fine and don't need surgery. Didn't want it anyway so we're on the same page. Plus I didn't like her.

Appeal for full genome sequencing letter will go out soon. My husband wrote the perfect letter and I hope it will work. My Metabolic Myopathy Geneticist is holding tight. I'm hoping that will illuminate some mutation that will be helpful to know about.

September 2019 Current Symptoms:

• STILL can't have an orgasm (that really sucks)
• Muscles shake after short burst of high intensity use
• Break out in a sweat if I "do too much" muscle wise. The bummer is I don't yet know what that "too much" is and it also feels like a moving target.
• Loss of muscle strength and energy through the day
• Pain in feet unrelated to activity
• General body pain (worse now, but could be from going down on the Cymbalta)
• Ptosis of both eyelids, right's a little worse (stabilized)
• Occasional dry mouth (this seems to only happen if I'm getting sick or having an "episode")
• Occasional choking (including that time recently that it was almost serious!)
  
  What's BETTER since June:
• Muscle cramps, spasms and twitches are being controlled with my Baclofen 20mg
• Occasional headaches, constipation and urination delay is all much better. This could also be from the Baclofen? Would make sense given it's a muscle relaxer.
• Feel closer to being able to have an orgasm (Yay! Again, could be from the Baclofen)
  
  
  
  I'm overjoyed that there has been some improvement. Moment to moment my life is still very challenging. "What can I do? Am I sure I can do that? I feel tired but can't rest right now. Push through girl! Pain. Pain. Pain. Stretch. Rest. Eat good foods. I miss Taco Bell. Stop doing things that make you feel worse! You need to rest. Don't forget to play. Time for work."
  
  And the next person who tells me to "Get well soon" might get a throat punch. 

All the feels

Oooooh chronic illness. You really know how to kick a girl in the butt, don't you? It has been a while since I posted because... you know... life and spoon sucking and stuff. Working 40hrs a week while struggling with my body pretty much takes 100% of my efforts daily. I'm constantly scared that I won't be able to work in the near future, but I tell myself that the only thing that would make that happen is if my voice were to be affected. Pretty much everything else I can work around. For instance, I just asked my employer for a voice to text software that will work with the programs we use.

I saw this taped to a bookshelf at a thrift store. I love little surprises like this!

I'm meeting my new neurologist this Tuesday and my husband can't come with me. I have to be a big, brave dog all on my own. I've got this! The new person is supposed to specialize in Metabolic Myopathy, so I'm hopeful. My old neurologist will also be there, so that will be helpful to have that support too.

Curious about my current symptoms? I know you are!!!

June 2019 Current Symptoms:

• STILL can't have an orgasm (that really sucks)
• Muscles shake after short burst of high intensity use
• Muscle cramps and spasms randomly everywhere
• Loss of muscle strength and energy through the day
• Feet go into tip toe frequently when seated
• Right lower eyelid spasm/twitch frequently
• Pain in arches of feet unrelated to activity
• Ptosis of both eyelids (right is worse)
• Increase in asthma sx (4 nebulizer treatments this year and 3 rounds of Prednisone)
• Occasional dry mouth
• Occasional choking
• Occasional headaches (from the COQ10?)
• Occasional constipation unrelated to food
• Occasional delay of urination (muscles won't relax)

Right now I'm on 2,800mg of COQ10 to try and help my Metabolic Myopathy (caused by a gene mutation.) Reading other people's experiences I feel fortunate to have been diagnosed so quickly. It didn't feel quick to me at the time, but for some people it takes years and years. 

Currently I'm trying to find other people with a COQ6 mutation who have Metabolic Myopathy. I've found one who I think does, but they're in India and English is a bit hard for them. I found another 5 who have very similar conditions that come super close and include COQ10 Deficiency. Of those five all are in a wheelchair at least as much as I am, if not more. Some have a breathing tube and feeding tube. That's a bit scary.

I'm glad I live in a time where I can hop online and get information and try to find other people on such a rare condition. In the meantime I have my husband and my family to share my feelings with and that's also very helpful. 

December Symptoms

I noticed it has been a very long time since I shared my symptoms here. Not since July to be exact. 

July, 2018 Symptoms Blog Post

May, 2018 Symptoms Blog Post

I also noticed that back in July I talk about using Meg, my rollator. She's become like another limb for me. It's really hard to imagine it has only been 5-6 months that I've been using her. Now I consider "only using Meg" to be a very good day. Anything more than a 1 store stop and I need more than just Meg.

So here's what I'm currently struggling with: 

•   Instability when walking in both legs. 


•   Gradual muscle fatigue when standing and walking in both legs.

•   After apx 420 steps extreme leg muscle fatigue. 


•   After apx 420 steps thigh muscles start shaking with muscle fatigue. 


•   After apx 420 steps legs muscles feel strained and mildly painful as if they had major exertion (like ran a marathon.) 


•   After apx 420 steps face and body break out in cold sweat (takes hours to recover from the feeling of major muscle exertion.) 


•   Frequent muscle cramps, twitches and spasms: arms, legs, arch of feet on the bottom, torso, right eye. 


•   Bottom of feet feel sore like I ran a marathon. Deep muscle ache. Especially in the morning and at night. 


•   Not able to sexually climax since muscle issues started. Muscles fatigue too quickly, even with pillows 
and support. 


•   Minor muscle weakness in right hand when compared to left. 


•   Arms fatigue (again, feel strained as if they had major exertion) when: brushing teeth, shampooing hair, cutting food, cooking, pushing a broom, minor activities like shopping. 


•   All muscles start off at normal strength, but fatigue with use much faster than typical. 


•   Constant back, neck and right shoulder pain. 


•   Constant stocking glove pattern neuropathy managed with Lyrica. Began 2015 post Latent TB Treatment. 


Treatment/Modifications: Rollator, transport wheelchair, electric wheelchair, reduction in house chores, rest in between activities, major reduction in physical activities, use electric scooter shopping carts, hot water bottle for back and neck, Ibuprophen PRN, warm showers, muscle rubs daily, not lifting more than 20lbs, home modifications like safety bars, cooking stool, etc. 


I also keep a running list of my testing flags and medical issues in the hopes it will help. I bring this list with me to every single doctors appointment that I have. Honestly, the doctors barely glance at it. They say something like "Well aren't you prepared" and then just put it down on the counter and proceed to ask questions that are answered on this sheet. -sigh-

I did have a bit of good news this week though. My neurologist messaged me to say that he feels my latest lab tests are matching his suspicion that I have Metabolic Myopathy and that's the source of my muscle weakness. I hope he's right and at my January 9th appointment we can begin some treatment. 2018 Has been a challenging year. 

Current Symptoms - July

Back at the end of May I shared this post about how I keep a "running tab" of my current symptoms to share with all my medical providers. I've only been met with positivity when I come prepared and organized like this. That said, I do try and keep it to a 1 page sheet. That's becoming more challenging. 

I have an appointment with my primary care doctor next Friday and I'm seeing my new rheumatologist the Friday after that. And.... Huge news... My insurance referral came through yesterday for my spinal tap. That's coming up next Monday. Hopefully they'll have the results hot off the presses for my new rheumatologist! YAY! Things are starting to come together. That also gives me a full week to recover from the procedure before I start my new job. 

With these important appointments in mind I did a little tweaking to my list. Previously I had two categories on a Word document. 
1) What I've Tried 
2) Current Symptoms 

Now I broke that into three categories. 
1) What I've Tried 
2) Currently Using 
3) Current Symptoms 

All of these sections have grown since May. Here are my current symptoms:

Current Symptoms:

• Reduced overall muscle strength, especially right side of body
• General Fatigue (feel exhausted most of the time, especially after activity)
• Muscle shaking (arms & legs) after short exertion (like 15 minutes of light gardening) Stops with rest after about an hour
• Inability to have an orgasm (muscles can’t sustain contraction for period of time.)
• Joint pain in feet (especially right foot, ankle and 4 smaller toes. Right ankle & toe swelling.), in both hands (especially right hand & fingers. Hands feel hot) lower back, mid back, neck (that sometimes wakes me during the night), both knees, right hip and right shoulder pain
• Muscle spasms (thighs, calves, arms and stomach mostly)
• Dizziness (especially with movement)
• Peripheral neuropathy symptoms (especially in legs, arms and lips) numbness, tingling, feels like nerves vibrating or full of bees (currently taking Lyrica for this.)
• Both hands swollen in the morning (Sleeping in compression gloves helps.)
• Feeling of fullness, pressure in right ear (ETD)
• Painful body joint gelling in the morning and after sitting
• Forearm burn and itching (nerve itch? Ibuprofen helps)
• Increase temperature sensitivity in forearms, hands, shins & feet
• Frequent urination, especially at night (0-8 x per night. Improved temporarily with Lyrica.)
• Dry mouth, especially at night
• Ulcers on tongue & roof of mouth (Responds to salt water rinses)
• Sore throat off and on (like I feel like I’m getting sick, but I don’t)
• Cracking of joints (neck, hands, feet, back, knees)
• Occasional “brain fog” (like I have the flu)
• Toes on right foot appear to be “drifting” away from big toe & swollen
• Ankle swelling on right foot after minor activity

My jacked up feet after 15 minutes of light gardening.
My toes and right ankle puffed right up.
Yes, it hurt.

The spinal tap will hopefully help sort out which of these is being caused by the RA and which (if any) are from something else. That's why it's so important. It is possible that all of this is from RA. Or it could be comorbid with MS, ALS, or something else completely. 

My muscle weakness is still progressing. It's even affecting me sexually now, which is a huge issue. I'm hopeful that my new rheumatologist can find a drug that will help and I can regain some strength and mobility.

In the meantime, Meg will be my new "adventure buddy" and I'll just do what I can, for as long as I can.