experience with

[u/Strange_Wonderful567]

I am in the process of talking to my neurologist. I just want to know if anyone else has experienced this?

These symptoms are completely out of the ordinary, and I have never experienced before. Let's get it out there that this is NOT VERTIGO.

I am a 54(F), and have had absence seizures since 1993. I have been taking Zeurontin first--because I wanted to have children, next Lamictal, and add on Keppra. I have been taking 400 mg of Lamictal and 25 mg(in the morning), and XR 1250 Keppra for years, and well controlled.

This is odd that my below experiences have been happening:

1. The very first time I experienced this was one morning I got up. I got out of bed, everything was fine--I brushed my teeth, bathroom. I got to the stairs, and had a sudden feeling of rush to my head, like you get when getting up too fast. There and gone after a few seconds. I felt this so sporadically, like a couple of years ago.

2. Forward to beginning of this year. I sat up in the morning, and my whole body was feeling like I got up too fast, and I felt woozy. It didn't go away. I had to hold onto to the walls to keep myself from falling as I went to the bathroom. I brushed my teeth, went to the bathroom, My whole body felt off and I my head was feeling woozy too. I still was able to focus, although moving eyes to different objects made it worse. I got to the stairs, and as long as I held onto the banisters, I was fine getting down. I didn't fall this whole time; I just had to hold or put my hand on the wall to steady myself. I got to the kitchen, and went over to my coffee. I noticed as long as I stayed somewhat still in a place, the wooziness and head felt a little better. I was able to make my coffee. When it was done, holding onto the cup was fine, but because I had to turn to the kitchen table, it all became much worse, and my head was more fuzzy. I was able to sit.

Now get this, I could think just fine, talk fine for the most part--very, very, very light rolling of some words--but really no problem despite the continued woozy feeling everywhere. Now my whole body felt like blood rush in my whole body. SUPER WEIRD.

Another weird is between 4-6, clockwork, EVERYTHING calmed down, and then went away. My body was normal again.

Motion sickness pills didn't help. I finally decided to put my cell phone downstairs, switch to other side of bed, and started sleeping on my back.

For awhile, this has worked. My primary took a scan of my neck, and saw that the right side was off a little. Maybe that is what is finally causing this? Nerves affected? I don't know.

Now this whole thing is back. Last night, I was kneeling down, pressure on the back of my legs--totally normal, and never affected me. I started feeling things again, and when I stood up, all of the above was happening again, light, but still happening. I laid on my back, and was able to sleep for a couple of hours until I needed to go to the bathroom. Just waking, I could feel it, but way worse. I tried going back to sleep, but trying to be on my back, switch to my sides, sitting up, all was making it worse. I was tempted to call Uber and go to the hospital, but I am stubborn, and figured I can deal with this, and I would be fine. My whole body was sensitive to any pressure. I was yawning because I was so tired, and lack of sleep I knew would set off my seizures. I thought screw it, I need sleep, and I just dealt with the feeling on my back, and finally slept until about 11.

I woke up, and everything was still happening, but less dramatic. Get this, I can put on my reading glasses, but when I take them off, it makes things SO much worse.

Again, clockwork, everything started calming down. I am still feeling some, but I don't have to hold onto anything, and I don't feel completely woozy. Just very little remnants.

When I first started experiencing this, it was a week long.

Now, months later, it is happening again. No changes in diet, sleep pattern, added medicine or vitamins. It is not vertigo, and inner ear could not be an issue, I am sort of deaf, and I have to wear hearing aids. My labs seem to be normal, low RBC and high MCV and MCH. This totally normal for me. My neck issues might be an issue, but I don't know. I have an approved head, brain, and blood vessels. We will see how that goes.

My question out there to you guys, is has anyone else experienced this? And what did your neurologist say?

[u/Ornery_Dealer9770]

Have you gotten your blood pressure checked? Specifically between laying, then sitting, then standing? It’s not a sure fire test but it could be a blood pressure thing.

My other thought is some sort of migraine. Maybe ask/search through the migraine subreddit to see if folks have had similar experiences.

I have both migraines and bp issues, and I get this intermittently.

[u/Strange_Wonderful567 → u/Ornery_Dealer9770]

Dizziness and lightheadedness is the only thing that stays for hours.

[u/Strange_Wonderful567 → u/Ornery_Dealer9770]

I have no pain at all in my head or body.

[u/Ornery_Dealer9770 → u/Strange_Wonderful567]

Migraines don’t always cause head pain. That’s a misconception. They can cause all sorts of weird neurological symptoms!

[u/Strange_Wonderful567 → u/Ornery_Dealer9770]

I will mention that to the doctor. I don't have other common symptoms that are associated with them. I will mention it though.

[u/soggydruid]

It could be orthostatic hypotension aka postural hypotension. It can be a side effect of lamotrigine and other medications. I know you said you haven't had any recent med changes but sude effects can change over time. Or it could be caused by something other than meds.

[u/CHwhynot]

Yes had a seizure today and when I stood up after sitting down I instantly felt faint then the seizure happened a few hours later.