Latest Trip to Mayo Clinic

I’ve been MIA on my blog for a while. I’ve been struggling with seizures and migraines for months, but I think I’m finally at a place where I am ready to make more BIG changes. Migraines are still hanging around every day, but a little more tolerable with Vimpat (originally prescribed for epileptic seizures). I’m no longer taking Clonazepam daily, as suggested by Mayo. My muscle jerks are still daily and happen often, but I hope to get those controlled once I start on the plan the Mayo Clinic and I  have agreed to begin.

I found out that it’s more than likely the jerks and seizures are non-epileptic seizures (NES). After a 3-day epilepsy monitoring unit (EMU) hospitalization at Mayo Clinic in Arizona in early April, doctors say that the spells I had during monitoring were, in fact, NES, meaning there was NO electrical abnormalities on the EEG during any of my spells/migraines. Migraine was a big factor during these spells when they spiked in pain level. Daily, my migraine level is around a 2 to 4 on the scale with Vimpat. Without Vimpat, it rose to 10 within 24 hours and triggered the seizure-like and stroke-like symptoms. Very scary stuff. Since the Vimpat lowered my migraine pain level, I feel like this lower migraine level does not trigger these spells and I am able to have better days, so treating the migraine is very important. Botox for chronic migraine was suggested and I will begin those as soon as I find a doctor locally, which will hopefully eliminate the need for Vimpat all together. Keeping my fingers crossed!!!

I AM TERRIFIED of trying the Botox treatment! I have heard horror stories AND success stories, but the worst are the ones that stick with you. Hopefully I’ll be on the success side of those stories! I have agreed to give it a shot, so here we go! The goal is 100% migraine relief and since I do not get that with Vimpat, it’s best I find what will. I can’t imagine a world without a migraine, honestly. I have a migraine at various pain levels every day. On Vimpat it’s mostly at a 3 to 4. Off Vimpat, ugh, don’t remind me, it’s agony. I can still jump to an 8 to 10 with Vimpat, but it happens RARELY and only lasts minutes compared to hours/days/weeks. Mayo docs think I can get to a 0 using Botox if it is successful for me. I HOPE SO!!

As I mentioned earlier, I was hospitalized last week for three days at the Mayo Clinic at their Epilepsy Monitoring Unit (EMU). Arizona was beautiful and the weather was fantastic for Spring. My mom and I flew in on Monday and stayed through Sunday. Unfortunately, she had a minor accident and went home with a severely sprained toe. SORRY MOM – LOVE YOU! She went with me to all my medical appointments the week before my hospitalization. It was so nice and comforting to have her with me. My hubby joined us on that Wednesday before the EMU. We made a weekend out of the trip and enjoyed the sights, shopping and CASINOS! We had a really nice time and made a few memories along the way.

Stephen was awarded the Clean Plate Award. They made a big deal, which made us laugh the rest of the night!

After saying “see you later” to my mom on Sunday, Stephen and I spent the whole rest of the day just watching TV and doing NOTHING. It was so, so nice. We had been on the go all week, which is exhausting when you’ve rarely left your bed for months. I took it easy, but it was nice to just walk and be out and about. On Monday, last week, we began the EMU admission and the fun began (sarcasm is so great!). I made sure to eat AWFUL (delicious) sugary-foods to kick-start the fun the week before (BJ’s monkey bread…OMG). It was so amazing to eat all the things I deny myself to watch my weight. With a Diabetes Type II diagnosis a few years ago, I do not eat much sugar. So, it was a nice treat and it worked to trigger a massive spell that first day. It was so unexpected, I didn’t think I’d get any spells that soon. Another thing that helped trigger symptoms was that I had ran out of Vimpat 24 hours earlier. I didn’t refill the bottle because I wasn’t sure they’d keep me on the medication or decided to change it for something else. In all, I had one big spell and two smaller spells. They felt this small sampling was enough to provide a diagnosis. I agreed, they had monitored a variety of spells that I typically have at home. While I would have loved to have the other spells I also have, it just didn’t happen.

After all the testing, including Neuropsychological testing, I was released with the following diagnosis’ and limitations:

  • Non-Epileptic Seizures (NES)
  • Chronic Migraine
  • Hemiplegic Migraine (this is still in question, as I have symptoms that don’t fit in the box, but for now it’s the closest migraine disease I can relate to)
  • Possible Post Traumatic Stress Disorder (PTSD) from a bad car accident in 2004
  • Neuropsychological testing showed cognitive inefficiencies, but otherwise normal
  • Not allowed to drive or operate heavy machinery
  • Continue current level of activity (which is not working)

I was suggested or prescribed the following:

  • continue Vimpat 150 mg twice a day for MIGRIANE (not seizures)
  • discontinue Clonazepam .5 mg daily and use “as needed” for severe jerking spells for relief instead
  • Botox onabotulinumtoxinA for Chronic Migraine (150 units every 12 weeks)
  • Prochlorperazine 5 mg as a rescue medicine for severe migraine. Doctor’s Note: “…to be taken at headache onset in addition to three tablets of Alka-Seltzer (effervescent aspirin) which can be quite effective, and sometimes as effective as a triptan medication”
  • Low Glycemic diet (I have chosen the Ketogenic for Weight Loss)
  • Supplements proven to help with migraine:
    • Magnesium Citrate (400mg twice daily)
    • Riboflavin B2 (200mg twice daily)
    • CoQ10 ubiquinol (150mg twice daily)
    • Melatonin (5 to 10 mg / 2 hours before bed)
  • Cognitive Behavioral Therapy (CBT) for PTSD and Non-Epileptic Seizures
  • Psychotherapy for anxiety, PTSD and Non-Epileptic Seizures
  • C-Spine Physical Therapy for neck and shoulders contributing to migraine

While I haven’t put everything on this list in place yet (waiting on doctor’s locally), I am excited to get started. Learning you have NES is hard to hear, at least it was for me. While I understand how emotions and thoughts can create such damaging and physical symptoms to the degree of disability, it is difficult to realize that it’s happening to me. Sometimes I feel “weak,” not physically, but mentally. I know I’m not, I know I’m a strong woman, but strong women aren’t bulletproof. I am definitely not. Mental health is so important, but more importantly for those with chronic health conditions. It’s a painful cycle that does not end if treatment for both is not obtained. The mind is very powerful and I am the type that holds in my emotions and considered strong by outsiders. I don’t talk about how I’m feeling emotionally about things in my life and I don’t normally cry in front of people, I just push those bad things deep down and forget or cry-it-out when I’m alone. But guess what, my body does not forget and after years of this damaging practice, my brain could no longer contain it all and it’s let me know every day for the last 13 years.

I’m ready to retrain my brain to take in those emotions (both good and bad) and not let them affect me so dangerously. I have not had an easy life emotionally; most people can’t say they have. There are obviously varying degrees of what “easy” means and I am not downplaying anyone’s reality. I sometimes tell myself, “Well, I shouldn’t feel so bad, at least I’m not as bad as…” That little saying I tell myself is damaging to my emotional well-being. I used to see it as a positive statement, something I’d tell myself to make myself feel better, but in doing so I am not fully dealing with my own pain and sufferings. I realize now that I do need to acknowledge and FEEL what I’m going through, not ignore it, and then let it go. No one body is the same, therefore you are not stronger than I am and I am not stronger than you are. I am learning…accepting of this new reality. I realized, after a few therapy sessions, that I take in the emotions of those around me and make them mine. If my husband is angry, so am I. If my kids are upset, so am I. If my mom seems down, I become sad and silent. I have always been this way for as long as I can remember. I think that’s why I made a good writer in school and why I love to read so much. I found myself morphing into the characters and could physically feel their emotions. Have you ever had a physical pain in your chest when a couple breaks up in a movie? I do, as if it actually happened to me. Sometimes I find myself putting a book down because the topic unveils old, painful memories. The book affects me as if it just happened to me. I realize now this is not healthy. It means I have not let go of old feelings. Well, it’s time I did.

I have started reading “Codependent No More: How to Stop Controlling Others and Start Caring for Yourself” by Melody Beattie and it is an eye-opener. While it gears towards alcoholism and is Christian in nature, I still find it relevant to what I go through. The message is clear for me, DO NOT ALLOW OTHERS TO DICTATE HOW YOU FEEL, IT’S THEIR PROBLEM, NOT YOURS. Now that sounds harsh, right? It did to me too. BUT, this is a problem for me, so it is not healthy in my case. I should remind myself, when someone is angry around me, it is not my personal problem. While I can be empathetic to their situation, it is not something I should emotionally worry about. I must allow that person to figure things out and not make it my problem. Including my husband and kids. You see, when my husband is angry at something, his anger is targeted towards myself and the kids. He is working on it, but I allow his anger to defeat my good day. I allow his anger to feed my physical symptoms. I don’t do this consciously, it’s something I do subconsciously. But now that I am aware, I can counteract my body’s “natural” response of anger, sadness, NES and, hopefully severe migraine with self-talk and positive thinking. So much harder than it sounds. I realize my severe migraines aren’t 100% emotional reactions. My body reacts with severe migraine to physical pain, such as nausea from eating something bad or too much chocolate and/or when the nausea becomes strong cramping. But by keeping down my emotional triggers I can eliminate a very large number of my episodes and live a more normal life.

Unfortunately, my body responds with scary seizure-like symptoms and chronic migraine, we all know that by now. It’s the only way it knows how to cope with life’s stresses and physical pain, both good and bad. There are times when I will be so excited about something and must lie down because my body let me know it didn’t like that level of excitement. My body is always in Fight or Flight mode, mostly FLIGHT MODE in my case. For the last 10 years or so I have had to regulate my emotions: watch my anger levels, try not to cry when I’m sad about something, and tone down my excitement levels so I didn’t trigger a severe migraine that would control my body for weeks after. That’s no way to live a healthy life. I want a healthy life! So I am 😉

3 Replies to “Latest Trip to Mayo Clinic”

  1. I have hemiplegic migraine as well. I identify with much of what you’ve said here. I’m also an empath, something that’s caused quite a bit of emotional upheaval in my life as well. I don’t think you’re responsible for this condition, no matter how much emotional upheaval there is, it may trigger the condition but it’s not the cause. I’m glad you admitted as much towards the end there because this isn’t your fault. It’s not your fault that you feel so much of what others are going through.

    It has gotten to a breaking point for me as well and I rarely leave my house anymore because I was constantly sensing the energy of others and it was causing me too much anxiety. Probably not the healthiest way to deal with it, but disability has made the proper conditions for me to hide myself away from it. If you ever want to bounce things off of someone that understands both life with hemiplegic migraine and being an empath, I’d be happy to be an extra ear for you, digitally speaking anyway ☺️

    I’d love to connect, I found your blog via a Twitter hashtag for hemiplegic migraine. I have a blog as well but it’s probably not your taste. I’d love to connect sometime though, feel free to reach out anytime, my name is Dez.

    Be well,


    1. Sending you healthy healing Dev! Thank you for sharing some of your story. We migraineurs have to stick together and help each other through the worst parts. I never considered myself an “empath” and I’m not even sure what the true definition of that is. I just know I’ve always had to talk myself out of the mood of the room. Or talk myself out of feeling angry or sad when I’m around someone who is. I’m a normally happy and smiley person so it’s like being on a roller coaster of emotions when in a large room. That is unless I’ve given myself a pep talk beforehand and set my mood. Weird right! The mind is a beautiful and powerful thing.

      1. Agreed. I do think you’re definitely an empath. Do look into that when you have some time, it really explains everything you just said and I experience the exact same thing, it’s often very difficult to deal with and can cause chronic anxiety about going anywhere where there may be a large group of people like the grocery store. Empaths can sense everything that people try to hide, their “public faces” are not able to deceive an empath.

        There is a scientific explanation for this ability to sense these energies as every living thing produces an electro-magnetic field around their bodies extending as far out from each side from 5 to 8 feet! If we are sad, angry or happy I believe the energy of those fields change and people like us pick up on them immediately and take them on ourselves almost as if it’s contagious, so when there is a large group of people like at the market, we are sensing all of these energies and it can be incredibly overwhelming.

        I wish I had a better explanation for you but that’s it in a nutshell. You’re certainly an empath judging by the “symptoms” you describe of taking on the mood of those close by. I sometimes wonder if those of us with migraine have a sort of sixth sense as many of us seem to be empaths and many of us also have the second sight as well, I am one such case, maybe you are too. I did subscribe to your blog, do keep writing about it and migraine as well. I’m working on a post on hemiplegic migraine right now, my hope is to bring more awareness to this incredibly rare condition. I hope you will continue to write about it as well. So nice to connect with you!

        Be well,

        – Dez

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