Tag: non-epileptic seizure

My Brain Screams

On By WendyIn Bipolar, Chronic Illness, Chronic Pain, Meniere's Disease, Mental Health, Migraines14 Comments
manipulated detail photo of saguaro catus by wendy holcombe

For over a year now I’ve been hit with one thing after another. Last Fall my bipolar medication stopped working and I basically had a psychotic break with the mania/rage going way out of control and battling a lot of medication side effects before we finally got that under control. Then I had a severe UTI that caused hydronephrosis in both kidneys, I had a cyst removed from my scalp that got horribly infected and I had a reaction to the antibiotics. In April the severe intractable migraine started and has continually gotten worse; over the last couple of months I’ve been having an escalation of cluster headaches, at least one a week. and now my antidepressants have stopped working. All this while we have been looking for a house, in the worse housing market I have ever seen, and we have to move from our rental by the end of November.

It is any wonder my brain has decided to check out?

In 2016 I started having seizures during an extremely stressful time of my life. It was determined they were psychogenic non-epileptic seizures. You can read more about that in this post: Psychogenic Non-Epileptic Seizures What Are They? Since that time I haven’t had many, only a few and only in times of great pain (like when I was in the ER for my migraine) or extreme stress (like after a vertigo attack that happened during the mania). Lately they have been coming regularly. It is increasing my pain levels dramatically. When I have a seizure it looks like a grand mal seizure. It starts with my right hand twitching, then the arm goes, and the whole right side twitches and curves back, my head draws back, my muscles are all tight and spasming. It is very painful, and my neck and shoulder on the right side still hurt so much. I feel tingly on that side, and I just feel so off. During the seizure I am mostly aware, but I can’t do anything. Sometimes I’m not as aware, sometimes I’m very confused when it’s over. I always cry when it’s over. I feel so exposed, vulnerable, scared, and unsafe.

Just a year ago I was doing so much better I bought a car. I was driving, cooking, shopping, painting, swimming…. I don’t understand what happened. I’m not asking “Why me?” or anything like that, I’m simply confused. I know we made a major move, but I was doing pretty good for the first few months we were here, so I really don’t think it was the stress of moving. But I guess one stress could possibly have snow balled into a bigger stress… into a bigger stress… into more illness…but who really knows. All this could have happened no matter what. It could have happened independently, but it just happened to happen one right after another I suppose.

Where does it leave me now?

Migraines – I’m still starting Aimovig on the 28th for my migraines, but I won’t know if it’s working for 3 months. I just finished a round of steroids hoping to get a break from the pain, it did lower the pain level, but they made me so sick I couldn’t enjoy it. (Oh boy was I sick, Meniere’s and steroids do not mesh well together, at least not with me). I may go to the pain clinic to get injections in my neck, I haven’t decided about that yet. Just a little scared about that one. Oh, the Migranal nasal spray is working as a rescue medication, thankfully. It doesn’t completely take it away, but it comes close, so I am having a little bit of relief twice a week. More than I was getting, but as I said, it doesn’t take it all away, it takes it from a 10 to a 7 or maybe, if I’m lucky a 6. Ah….a 6…but that is a rarity.

Mental Health – I started a new antidepressant, Trintellix, on Tuesday. I’m to try it for 2 weeks and if it doesn’t work we’re going to try Ketamine. I’ve tried everything else. This should be interesting. I’m working with both my psychiatrist and my psychologist about my seizures. I need to get my pain and stress under control. One step at a time. Just one moment at a time.

Home life – We’ll be moving into one of Stuart’s dad’s houses the beginning of November. The house Stuart grew up in. We aren’t sure if we’ll continue to look for a house to buy, or if we’ll stay there and renovate his house. The house is a bit further out than we planned to live, so we’re going to live there for a while to see how we like it. Kinda cool that we can do that. I’ve just been freaking out a little about not having a home, and needing to settle down. I’ve been feeling so lost and temporary ever since we moved from our house, six years ago, but it’s been so much worse since we moved here. When we moved here we basically got rid of everything. We have 2 chairs in our living room, and one is very uncomfortable. We have no dining room furniture. Our home is very sparse. We did not plan on renting for this long. It’s just so hard on me. This has just been so hard. I need stability. I NEED IT.

Right now I feel very alone, vulnerable, and scared. The only place I feel safe is in my husband’s arms. He literally saves my life every day. I told him that if it wasn’t for him I wouldn’t be here any more. So much pain, both physically and mentally…it’s just so much. And my amazing husband told me that he loves me so much, he never wants to lose me, but it also makes him feel guilty because he knows how much I’m suffering. I don’t know how I ended up with such an amazing man. He’ll never know how much it helps me to know he hears me.

I have so much, a wonderful husband, a roof over my head, nice clothes, good food, access to quality health care, support…. and yet I’m so unhappy. I’m so very sad. It hurts so much. My thoughts are consumed with pain. I find no enjoyment in anything. A friend posted a question on her blog asking if you found out you were going to die what would you regret not doing more of….and I could not answer that question. First I thought, not helping others more, getting more involved…. But then I tried to think of something I enjoyed that I would wish I had done more of, and I had nothing. There are things I used to love to do, but now…..not so much. My art…nope. Cooking…too much work. Taking pictures…can’t see it. I can think of nothing. All I do is sit and color by number. And that’s not for enjoyment, it’s to take my mind off of the pain…the migraine, the chronic daily headache, the back pain, the neck pain, the hip pain, the bladder pain, the pelvic pain…so much pain every day.

life is suffering. life is pain. life is ever changing. life is impermanence.

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ER – ICU – 3121 – Home

On By WendyIn Chronic Illness9 Comments

I got home from the hospital on Sunday afternoon.  I just read the post I wrote while in the hospital.  I’m so sorry, I had no idea that it was like that.  I would have let you know I’m alive before now!  You should have seen the status I put on Facebook!  It completely blows my mind that at the time I read these things after I wrote them and thought they said what I meant to write.  Yep…*Swoosh* MIND BLOWN!!

Here’s what has happened….I’ll refresh your memory from the last post, as if you could understand it.

I’ve been having these little muscle twitchy things.  Sometimes just minor, sometimes more pronounced, it always happened on the right side and it coincided with long days of vertigo, or migraines.  When I was exhausted, stressed…ect.  On Wednesday it happened without these being present.  It happened 3 times at home each time getting worse.  We decided to go to the ER.  As soon as I walked ….wobbled…in to the ER, it happened again.  The first thing they did was have me pee in a cup (check my electrolytes), and then a CT scan. The CT technician was great.  When it was over he stepped in the office to do the paperwork and it started, I remember thinking, “Where is he”…and then I screamed when the elevator hit the bottom floor and I was in motion…and scared, really scared, and crying…I didn’t know why I was but I couldn’t help it.  The CT tech was leaning over me, telling me I was OK, that I was in the hospital, we were going back to the ER, and he just kept saying that.  That was the first of many for days….some better, some worse.

At first they put me in a normal room, it was just to be for a little bit, until they could get me on the 5th floor, it has cameras, they wanted to observe me all the time….seizure watch.  But there was no room on the 5th floor, so I was put in ICU.  I could not be left alone….or far from help.  Stuart was there, but he had to go home to take care of our pets, and gosh he does have to sleep.  Luckily, my sister came soon and helped, thank goodness.

While I was in the ICU I had a 24 hour EEG, actually it only lasted about 15 hours because I had more than 6 seizures during that time so they didn’t need the whole time.  It came back clear.  I was sent to a regular room.

The doctor came in and told me that I am having non epileptic seizures.  He said they had a theory…  At that moment, I had a seizure.  He told my husband that, no, what he was thinking would not cause anything like that.  He was thinking something much less violent.  There are theories, but I don’t even know right now.  I will be seeing  my neurologist today.  I see my PCP next week.  We’ll see.

Since I’ve been home the seizures have calmed down.  They aren’t as intense.  I don’t know if it will stay that way.

Strange thing, while I’ve been having the intense seizures I did not have vertigo.  I would have small little swirls, that lasted just seconds, but that’s all.  Yesterday when I had severe rotational vertigo for hours.  I didn’t have a seizure until it was over for a while.

But I was in the hospital from Wednesday night to Sunday afternoon without having any real vertigo?  Don’t get me wrong, I don’t want seizures instead.  I just think it’s weird.  Now that I’ve said that, oh lordy please don’t let me have both at the same time!

I think I’ve told you all I know for now.

So far…another mystery in this crazy world of mine.

I’ll talk more about this soon….but….I’m having a Pity Party, and I’m not ashamed to say it!

I hope this makes a bit more sense….I’m really too tired to proof read it, not like it did much good the last time.  🙂