Weird new symptom possibly connected to Epilepsy

Posted by Leonard @jakedduck1, Jul 13 5:14pm

Good afternoon,
I was curious if anyone has experienced similar symptoms that I’ve been experiencing recently. About two months ago I was in the grocery store walking along and a weird feeling in the back of my head began. This strange sensation began in the back of my head over the Occipital lobe and worked its way forward as far as my temporal lobe, The pain was mild and I don’t know how to describe it.
Almost immediately after the sensation began my legs became weak. The first time it happened I actually collapsed but I never lost consciousness was never confused. I wondered if they might be some sort of Atonic seizure (drop seizure). My primary care physician thinks my seizures may be evolving or that I may have a migraine syndrome of some sort so I have an appointment Wednesday to see the neurologist. I doubt he’ll know what is going on but he probably won’t admit it, nothing like having confidence in your doctor, lol.
Jake

Hi Jake,
I am sorry to hear you are having new symptoms whatever they are tied to.

I can relate a little bit but not completely. I have had one sit-down seizure in which my legs became weak. I did not have the full-blown tonic clonic. I was able to attribute that incident to low blood sugar and not going into a full tonic clonic to the amount of medicine I was on at the time. I was in a store and happened to be at the front. When I came to I had one of the people who had congregated around me get me some beef jerky and a candy bar with peanuts in it. During it I was disoriented and out of it for a time but prior to this was "there" enough to realize I needed to sit down. I couldn't go into that store for a long time because the smell and lights of the store reminded me of the seizure and made me think I was going to have another.

The weird thing I get is the feeling on my forehead like the weight of a hand is there. It sometimes progresses to the back of my head but not always. I can attribute this to a lack of sleep.

My provider is a nurse. I did just talk to her about going to the level 4 epilepsy center and she is all for it. She said a lot of their patients go there. She is onboard with a sleep study also. I say all of that to say this, I am ok with any provider who recognizes their limitations.

This next is presumptuous on my part but that has never stopped me in the past. it sounds like you may have someone who isn't secure with their limitations. I am sure you are aware the depth and breadth of your knowledge could be intimidating. Since communication in the best of environments is 25% preparation, 50% presentation and 75% luck you have an uphill battle to convince them you are interested in what they know not what they don't. My old fallback is to get them to talking and keep them talking. At a minimum you will end up with a serious wild ass guess (swag) and bolster their confidence.

The best to you sir.

Mxy

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Hi @jakedduck1

I am sorry to hear about this new symptom. I can imagine it must be discouraging to come up with something new. As your doctor's appointment is today, will you post and let us know what he/she has to say?

Liked by Leonard

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@hopeful33250

Hi @jakedduck1

I am sorry to hear about this new symptom. I can imagine it must be discouraging to come up with something new. As your doctor's appointment is today, will you post and let us know what he/she has to say?

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@mxyzptlk32
@hopeful33250
Mxy,
I really do like my current Neuro. Even though his diagnosis of Arthritis in my neck may be correct I’d like to see a Rheumatologist to feel a little more confident and talk to my primary doctor and see an x-ray.
Jake

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That is a smart decision to talk with a rheumatologist for a second opinion, @jakedduck1. Do you have a rheumatologist now?

Liked by Leonard, mxyzptlk32

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No, he croaked. So much fun trying to find a new one. I may just ask my primary who she recommends. I really like her even though we frequently get into knock down drag out disagreements. But I’ll get her trained one of these days.
Jake

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@mxyzptlk32

Hi Jake,
I am sorry to hear you are having new symptoms whatever they are tied to.

I can relate a little bit but not completely. I have had one sit-down seizure in which my legs became weak. I did not have the full-blown tonic clonic. I was able to attribute that incident to low blood sugar and not going into a full tonic clonic to the amount of medicine I was on at the time. I was in a store and happened to be at the front. When I came to I had one of the people who had congregated around me get me some beef jerky and a candy bar with peanuts in it. During it I was disoriented and out of it for a time but prior to this was "there" enough to realize I needed to sit down. I couldn't go into that store for a long time because the smell and lights of the store reminded me of the seizure and made me think I was going to have another.

The weird thing I get is the feeling on my forehead like the weight of a hand is there. It sometimes progresses to the back of my head but not always. I can attribute this to a lack of sleep.

My provider is a nurse. I did just talk to her about going to the level 4 epilepsy center and she is all for it. She said a lot of their patients go there. She is onboard with a sleep study also. I say all of that to say this, I am ok with any provider who recognizes their limitations.

This next is presumptuous on my part but that has never stopped me in the past. it sounds like you may have someone who isn't secure with their limitations. I am sure you are aware the depth and breadth of your knowledge could be intimidating. Since communication in the best of environments is 25% preparation, 50% presentation and 75% luck you have an uphill battle to convince them you are interested in what they know not what they don't. My old fallback is to get them to talking and keep them talking. At a minimum you will end up with a serious wild ass guess (swag) and bolster their confidence.

The best to you sir.

Mxy

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I have what they call Syncope due to my seizures. I don't know if it is coming from the Temporal Lobe or not. I am going to be at UC Davis for testing at the Neurological department.

Liked by Leonard

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@cindypekarek

I have what they call Syncope due to my seizures. I don't know if it is coming from the Temporal Lobe or not. I am going to be at UC Davis for testing at the Neurological department.

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@cindypekarek

You keep me on my toes, Syncope – : loss of consciousness resulting from insufficient blood flow to the brain, Merriam-Webster
I hadn't thought along those lines but I will keep it in the back of my mind if it continues and I need a better diagnosis than my own best guesstimate.

Thanks.

Mxy

Liked by Leonard

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@jakedduck1

No, he croaked. So much fun trying to find a new one. I may just ask my primary who she recommends. I really like her even though we frequently get into knock down drag out disagreements. But I’ll get her trained one of these days.
Jake

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@jakedduck1

What!?! He is crooked? Did he steal your hoss? Ok, I better stop there because the rules say sarcasm may not be recognized. I generally envelope my sarcasm within sarcasm fonts but nevertheless. <sarcasm> sarcastic comment </sarcasm>

Mxy

Liked by Leonard

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@mxyzptlk32

@jakedduck1

What!?! He is crooked? Did he steal your hoss? Ok, I better stop there because the rules say sarcasm may not be recognized. I generally envelope my sarcasm within sarcasm fonts but nevertheless. <sarcasm> sarcastic comment </sarcasm>

Mxy

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@mxyzptlk32
Oops, I must’ve been thinking of my cousins caregivers when I wrote that. I met he croaked as in died. Feel free to be as sarcastic as you want, I have broad shoulders.
Take care,
Jake

Liked by mxyzptlk32

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@jakedduck1

@mxyzptlk32
Oops, I must’ve been thinking of my cousins caregivers when I wrote that. I met he croaked as in died. Feel free to be as sarcastic as you want, I have broad shoulders.
Take care,
Jake

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@jakedduck1

See? You would think I would learn. This is a perfect example of communication between human being's being 25% prep 50% presentation and 75% luck. I looked at that and I looked at it and did not think of croaked. I decided you meant what you said, the guy is crooked. You can bet the next time I see "crooked" I will be asking myself if "croaked" fits.
Will do, you also,
Mxy

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POTS possibly.

Liked by Leonard

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May be POTS

Liked by Leonard

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In reply to @charmyachicago "May be POTS" + (show)
@charmyachicago

May be POTS

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@charmyachicago
Hi there,
Although I don’t claim to be an authority on pots, I don’t believe my symptoms are consistent with that malady. Although I’m not in total agreement they’re consistent with arthritis either.
My blood pressure and heart rate are normal.
My primary doctor recently had me take my blood pressure & pulse before I got up, immediately upon sitting up on the edge of my bed and then while standing. All my readings were well within normal limits not like what one would normally see in pots or at least the type of pots I’m most familiar with. I thought it might be Postural Hypotension, But my knowledge of that is limited as well. My father was a C-5 quadriplegic and he suffered from that nearly every time we got him out of bed. I’m not familiar with Orthostatic hypotension happening after being upright for some time but who knows.
You may be more knowledgeable than I on other types of Pots. Do you think it's still a possibility?
Thank you for your contribution it was very much appreciated.
Take care,
Jake

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