Finally Some Good News

 My coffee the other morning. I treat myself.

Good Goddess...

I've been battling with my neurologist and health insurance for almost seven months now trying to get back on Botox. You have no idea how much work it's been. Phone call after phone call. Disconnections. Wrong people. I finally got some headway about two weeks ago when an agent from my health insurance was committed to helping me. She told me what had gone wrong. The neurology department kept filling out the request form wrong. And how to fix it. So then I finally found the billing person for neurology (after asking for them a million times.) WE GOT TO TALK. That was key. I told her what insurance told me to tell her and gave her my amazing customer care agent's direct phone number.

And guess what came today? Take a wild stab at it.

MY BOTOX GOT APPROVED!

I never had this issue with my old neurologist. I will give Mr. Screwup kudos for discovering my seizures. But man. What an endeavor that was. AND I got a notification two weeks ago that he's leaving. He was hardly there. I was really shocked. It made me wonder if he was causing all kinds of billing problems? Because at my one and only appointment with him he said that he could get me Botox and keep my pill treatment. I was specifically told in the past that it's one or the other and insurance won't cover both. He bragged that he absolutely could get it through.

Hah. He couldn't even get my Botox through. Loser. Bragger. Useless.

Some doctors are like that I've found. Just in it for the ego boost. I knew some therapists like that too. I think in "powerful" jobs where people depend on you, you can find that type of person. Of course along with others who just genuinely want to help people (like me.) 

Lesson learned. 

That's a lot of shots to look forward to. 
But it helps.

#1 Run from a bragger. The next time I get a doctor like that, I will ask to see someone else as I leave.

#2 I can literally do anything. I am a strong ass, persistent woman who can make anything happen. Just like my mom. She taught me well.

Now to get my son on disability. 
Cross your fingers (and toes) for us.

 

 

Seizure & Botox Update

My new neurologist completely shit the bed on me. I've had to cancel TWO Botox appointments now. Both of them because he didn't get the order in to my insurance. At all. Not even "on time." Nada. To say I'm angry is an understatement. His nurse swore to me that they would get it through now. But I have to wait for a letter of approval before I can get another appointment. And who knows how long that will take. 

If I'm ever seen by the clinic again (now I'm just being dramatic) I would still like a second opinion.  My muscular neurologist said it was "possible, but good to get a second opinion." 

Here's the information I found online: 

Absolutely — yes, it is possible, and in my specific medical context it’s not just “possible,” it’s actually clinically plausible in a way that both of my neurologists are recognizing.

1. Phantom cigarette smoke is a classic temporal‑lobe seizure aura

Smelling smoke, burning, or chemicals when none are present is one of the best‑recognized sensory auras of temporal‑lobe seizures.

It doesn’t diagnose seizures by itself, but in someone with:

• a left temporal‑lobe craniotomy,
• new stereotyped phantom smells,
• episodes clustering at night,

…it becomes a meaningful clinical clue.
My migraine neurologist wasn’t guessing — he was recognizing a known seizure pattern.

2. Nighttime seizures are extremely common

The brain’s electrical stability changes during sleep transitions. Temporal‑lobe seizures often:

• occur during falling asleep or waking up
• cluster in the early morning hours
• appear as “silent” or subtle events

So the fact that mine happen mostly at night actually fits the pattern.

3. A normal EEG does NOT rule out seizures — especially temporal‑lobe ones

This is the part most people are never told.

A standard EEG:

• lasts only 20–30 minutes
• often doesn’t record sleep
• can’t reliably detect deep temporal‑lobe activity

Up to 50–60% of people with temporal‑lobe epilepsy have a normal routine EEG.
My muscular neurologist was correct:
You can absolutely have seizures with a clear EEG.

This is why neurologists rely on:
• symptoms
• history
• MRI findings
• nighttime pattern
• response to medication

…not just the EEG.

4. My history makes seizures more likely

A left temporal‑lobe craniotomy means:

• scar tissue
• altered electrical pathways
• a region that can become irritable years later

Post‑surgical temporal‑lobe epilepsy can appear months or years after surgery.
So again — The neurologists aren’t reaching. They’re following the evidence.

I hit every symptom listed, including improvement with my medication. I haven't "smelled burning" since. Hmmmmm. 

 

Read Seizure Blog Part 1

Read Seizure Blog Part 2 

Life Goes On

 Sometimes life can click along with nothing changing for years. Then suddenly I can have months, weeks, days where things change so fast it's hard to feel present.

I recently lost my precious Sweetie girl. She was my canine companion, my fur baby for 16 years. I feel lucky to have had her so long. I was also aware that super old age really sucks... even for animals. I would say she was "not her best self" for the last two years of her life. Joint pain and dementia had set in. We did what we could to keep her happy and comfortable, but in the end she didn't even want to be touched much.

From the earth we are given and to her we one day return.

In the end she went quickly, thanks to veterinary medicine and our fast actions. I am grateful for her precious soul to have been a part of my life.

Now my grandparents are also facing a difficult end. Death that comes swiftly in the night is a rare blessing. Usually fog and pain are there years and years before death finally comes for us. I for one will welcome Death like an old friend and relish the sweet release when it's my turn. Pain is for fighting. Not death. Death is there to set us free. I never understand people who want to fight death. Even as a child that made no sense to me. 

They are very far away from me, both in distance and in life but that doesn't stop my love for them.

And then there was joy!
I found a new little boy needing a home and love. This is our brand new Miniature Pinscher named Max.

Animals give us so much love and teach us so much about life. Like all of nature, we just have to pay attention to learn.

What has also been going well is the help I've been getting for my health. My migraine neurologist is still out on maternity leave, but I'm receiving my Botox every 3 months. I also just had my bi-annual check in with my muscular neurologist. That went well. I'm having a lot of pain and weakness in my neck so I'm getting fitted with a special neck brace to wear sometimes. They think that will help. I'm also getting new wheelchair tires and batteries soon.

I had my eyes checked and the optician is recommending I try "Prism" lenses. Apparently my eyes aren't tracking together and the prism helps that. It may also help my migraines.

Life is going quickly.

The holidays will be here soon. Thanksgiving, then Winter Solstice and Christmas. I feel like if I even blink I will miss them. I'm just trying to be mindful and enjoy each moment as they come. Being present in the present.

Migraine Torment

I am still waiting for my Botox and to meet my new neurologist while my wonderful, usual one is on maternity leave. I will meet him and get my new shots in 10 days. Not that I'm counting. At least he finally got back to me (after an intervention by my primary doctor) and prescribed me something new to try and help in the meantime. That only took three weeks to get him to do.

My migraines are tormenting me. It feels like someone put me on a copy machine and made so many copies of my brain that now the ink is running out. I feel un-real. Not all here. Like I slipped between two realities. One of pain, dizziness, distractions and the real one. 

Conversations are hard to follow. I feel like I'm just a shadow of myself. A bad copy of who I should be. Quiet and then garbled. I call things and people by the wrong name. It takes a long time to say what I mean. It all feels awful.

I think that's one of the main reasons I tend to over eat. It grounds me. Gives me instant pleasure and makes me feel more... me! When I'm hungry that faded feeling only intensifies till I hit a point of not caring. Then it's actually challenging for me to eat.

Caring about things in my life (other than the people I love) is hard right now. The migraine just erases me bit by bit. 

I can't wait to get my Botox and start to feel like myself, even if it's only a minor improvement. Anything is better than this.

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).

Vestibular Migraine Update

April 14th, 10 weeks ago now I had my first round of Botox to see if it would help my Vestibular Migraines. Here's what happened.

• Weeks 2-4 my headaches slowly faded in both duration and intensity.
• Week 6 the dizziness went away overnight. I felt the best I'd felt in a very long time.
• Week 9 the headaches came back. First just one normal feeling one, then a worse one that lasted 48hrs. Now they come on daily and I'm taking a Rizatriptan Benzoate ODT 10 mg tablet as soon as I feel it come on. That's been helpful.
• Week 10 the dizziness is back.

My next injection round is scheduled for July 14th. I asked if I REALLY have to wait that long or can I get it sooner. The answer as with all things in the US is my insurance will only pay for it every 90 days. F*#&!!!

Now I have a little less than three weeks to go and I'm feeling shitty. Although it is great to know just how effective the treatment is! I was also told that the more I have it the more effective it will be and the longer it should last.

My only side effect has been a strange muscle cramp I get sometimes in my forehead. I think that's just part of my myopathy because I'm constantly getting muscle cramps and spasms. But it looks and feels very strange. Fortunately it only lasts about a minute.

Don't lie. I look like a Klingon!
Normal is top. Muscle cramp is bottom. Really funky sensation.

I'm so grateful to have a team of doctors figure out what the heck is wrong with me. I never would have guessed all this was migraines. Now I'm counting the days till I can get 32 shots in my head again. 

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.