Brand new here :) Autonomic seizures?

[Zachkev28]

I am going to c/p this from myepilepsy.com, where it seems as if there is very little activity, I just found this site today and it appears to be a more happening place
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Hello! I stumbled on this place while trying to research autonomic seizures. Hoping to find some info here

FTR, I am an (almost) 40 y/o mom to 2 boys, was an RN prior to having kids and my brain has gone to mush since leaving the work force. But I do enjoy the foray into the medical world by means of research.

I had an 'episode' about 4 1/2 years ago, 5 days post partum with my second child. I ended up in the ER with tachycardia, (ST, 140's), hypertension (160-190's/100's), which sort of came in waves which I could feel coming in a sense of feeling like I was about to pass out, palms sweating, and the desire to take slow deep breaths. As the wave would subside, I'd get very bad shakes (like post surgery or birth, I'm guessing adrenalin release) and I had a lot of sweating during and especially at the start of a wave/surge. Over all it lasted several hours, but after the first hour or so the waves started being less intense and by the end of it I was back to normal, aside from being totally wiped out.

A year and a half later, the same thing happened. Again a year after that, at which time I was in a medical facility already having a gallbladder scan done (they freaked out, shot me up with IV Cardizem which actually made it worse). Then 6 months after that, and again 2 months later.

I was told I had anxiety, I was blamed for not taking my Toprol soon enough, I was tested for pheochromocytoma several times and had a nuclear scan for neuroendocrine tumors. A cardiologist told me I just had high blood pressure, it was suggested I see a psychiatrist, I tried antidepressants, I thought I was going crazy and I was really losing faith.

Having a history of neck problems (post c5-c6 discectomy and fusion) and lots of nerve pains, I started seeing a neurologist who took a deep interest in my 'spells'. Long story short (ok, by just a hair) my 20 min EEG showed 'abnormal spikes on both sides of the brain' so I did a 3 day EEG which he said still showed abnormalities. I didn't get any specific details about them, but he feels confident that my 'spells' are seizures.

I started Lamictal at 50 mg and on about day 11 I developed a rash so I had to stop it. I then started Keppra at 125 mg and after a week went to 250 where I stay. I've been on it for about a month.

My brain MRI was normal, as are all labs, minus some slightly elevated catecholamines here and there, but not high enough to consider a pheo.

During the more recent spells I was getting a very distinct gut wrenching sensation at the start of each surge, I also get the urge to move my bowels. The earlier ones were very clear in lasting in waves for several hours, but the more recent ones would come in smaller sessions, but sort of came and went for a couple of days until the Big Daddy one freaked me out and sent me running to the ER again--my vision was literally going black and I thought I was going to drop dead in the parking lot LOL. The post surge shakes had my chair shaking so badly, my husband looked absolutely terrified LOL. I later managed to have one in front of my PCP who finally admitted 'ok, this could be organic' and hasn't mentioned a psych since.

Anyway, I'm just curious. I don't have an official dx, the neuro said "Oh we don't have to advertise it" and from what I read my Keppra dose is very low. It does seem to be helping a lot with the nerve pains in my neck, arms and hands, so for that alone I'm very thankful. I can't say if the 'spells' have decreased or not, they were so isolated and far apart, only in the past 6 months did the frequency increase and I don't know if that was a fluke or if the meds are actually slowing them down now. Would such a low dose of Keppra stop an actual seizure? It also seems that it's more of a med used in conjunction with something else, and it's the only one (for seizures) that I am on.

---- anyway, that's me Thanks for reading my long-winded post!

Beth

 

[Nakamova]

Hi Zachkev, welcome to CWE!

If you're not having any more episodes or unusual symptoms, then it sounds like the Keppra is doing its job, even at a "low" dose. There actually is no established therapeutic dose for Keppra, because of the high rate of individual variation. Your particular target dose is the dose that controls your symptoms. Someone else's target dose may be higher or lower. (I'm on a "low" dose of Lamictal, and it works fine for me.)

Keppra was first introduced as an adjunct drug, since all AEDs have to be tested on humans that way. (They can't give someone a placebo, or take them completely off one med before swapping in another, because of the risks). But Keppra has been used for monotherapy for well over ten years. It's quite common that it's the only anti-seizure med that someone is on.

It's interesting that your neuro doesn't want to give you an official epilepsy diagnosis. The abnormal EEG would ordinarily be enough to confirm that. What is he most worried about -- potential stigma? insurance issues? would he have to report you to the DMV?

Given when your symptoms first started, it's possible that hormonal fluctuations may play a triggering role -- something to pay attention to if your symptoms return (which I sincerely hope does not occur!)

Best,
Nakamova

 

[Zachkev28]

Thank-you Nakamova for your response

I have considered the hormonal component, as the second episode occurred near the end of a bcp pack I was taking to resolve an ovarian cyst. I do not recall all the specifics of the other times, only to know that I wasn't able to positively correlate each one with a hormonal flux. But I had a friend with poorly controlled seizures several years ago, she and I used to talk about how they were worse during her period and taking natural prog. suppositories seemed to help a lot.

I am a little bummed today b/c I am having nerve pains in my fingers again, and pain in my neck/muscle spasm type thing. I was hoping the Keppra would have been a magic bullet :lol: Incidentally, though, I do think I'm pms'ing, and everything does tend to get worse during that time.

One other tidbit I forgot to mention, I have been increasingly having some funky little jerking of various muscles, almost like I was going to move my hand or arm or leg, and it started before I actually initiated it. Not the whole limb, just a small twitch sort of thing. Very similar to the jerks one might get when falling asleep. I notice it's much more prominent when I'm exhausted or had several drinks the night before, etc. Having some of them today as well. I've had them mostly in my arms/hands and legs, but I've had them in my neck, back and stomach as well. I've also had times when my vision does this strange thing, almost like I'm looking through a veil of gray. Sort of like the contrast got turned down. That usually lasts less than a minute, though.

/end rambling

So glad I found this place, having 'fun' reading up

Thanks again!

Beth

edited to add that I'm not sure why the doc doesn't want to 'advertise'. I thought he'd need at a minimum a dx code to approve the meds, I don't know what he used. Also, during the whole workup, the EMGs showed peripheral neuropathy of all extremities. I knew my arms and hands were bad, but not so much my legs. I guess that explains the weird hot/burning/itching my feet do sometimes :lol: