Mysterious Pain

[tam bam]

Hi all,

I am fairly new here and haven't been formally diagnosed with E. just yet but I do have a neuro and just performed a 2nd VEEG a couple of weeks ago and I had a total of 16 seizures while it was performed. Hopefully, something will show up this time. I am due back in exactly 2 weeks for the results and to discuss medication.

Anyway, I have been having seizures for at least 10 years without a conclusive diagnosis. I have been seeking help from doctors for many, many years without any explanation as to why I am feeling so bad and having attacks of something. Well, now my new neuro thinks it maybe seizures. From what I have read my seizures sound more like Temporal Lobe Epilepsy. I mean to a T. The seizures started out as simple partials, then to complex partials and now the complex partials can lead into general seizures now. Not only does my new neuro think that I have been experiencing seizures but I also hired a new family doctor and she thinks the same thing, (I had to hire and fire a lot of doctors over the years because they could not figure out my problem or didn't care to and was only making me worse and one neuro retired on me without any notice so I have had a time finding someone to help).

Okay with a little bit of back story I will tell you about the mysterious pain with seizures. When I have seizures it is an all day thing and can last a couple of days, (Multiple seizures in a given day. Can be as little a 2 to as many as 15 to 20 per day). Sometimes I get these mysterious pains. It can be in my neck, in my shoulder or lower back. I have even had it happen in my hip. I didn't stain myself of anything the day before but it happens when a lot of seizures happen and when the seizures stop so does the pain. Does anybody out there no why this happens. I have been experiencing this for years now with no explanation. I even went to a Chiropractor and an Orthopedic doctor and they didn't have a clue as well. Since it comes on when the seizures hit it tells me that it is seizure related. Also if I take a pain reliever when this occurs it does not touch it. I just have to wait it out until it stops.

Thanking you in advance for any help on this matter.

tam bam

 

[Rae1889]

Hi there I sort of know what your talking about. sometimes when I have a tonic or tonic-clonic I get this nasty foot cramp or calf cramp. You know the kind that pop up out of nowhere and jsut KILL!?

sometimes i feel it before i lose conciousness, and others when i wake up and those msucles have not relaxed yet. Bu t i would suggest it has something to do with the tension in the muscles. Too much lactic acid in the body causing cramping?

unless of course this happens with simple partials and complex partials

 

[Nakamova]

Hi Tam bam --

Pain, especially in the form of muscle cramps, is one of the wide variety of sensations (like anxiety or chills or sensory oddities) that can be felt during partial seizures. It's often misdiagnosed as something orthopedic, the way yours was, because it can occur in an area of the body where there's been an injury in the past (like an old sports injury). Your new neurologist should be able to confirm that the pain you are experiencing is seizure-related, but it definitely sounds like that's what's going on.

 

[tam bam]

Thank you Rae for your reply. I know what you are talking about the pop out of nowhere. I get this in my neck just before my really bad seizures start. Not all the time but most times. For some reason my head will tilt to the side and then I hear a loud "POP" and it hurts for a second or two and then my seizures start. Sometimes I just go into a grand mal right after that so I am wondering if the neck pop thing is a simple partial seizure just before the complex partials and grand mals start. When the seizures quit my neck pops again and that is when I know the seizures have stopped and then I feel better. It is the weirdest thing ever. I have tried explaning this to doctors and they look at me weird and want to give me a CT Scan on my neck. I just tell them it isn't necessary because I have already had my neck MRIed before and nothing showed up so it is just a waste of time and money in my opinion.

I am wondering if the mystery pain is a simple partial seizure as well.

Thanks so much Rae and I hope you are feeling better I have been reading some of your posts.

tam bam

 

[tam bam]

Thanks Nakamova! I do believe that is what is going on as well. I wrote this down for my doctor to look at when he is examining the VEEG so he will have some idea as to what is going on with that. I think he will figure it out as well.

Thanks again and that makes total sense to me.

Also, when I had a status and was rushed to the ER one of the nurses who btw, knew a lot about seizures, asked me if I popped anything out of place. I told him no, I don't think so. I told him that my jaw moves with the seizures. It will pop as well and it feels as though it moves out of place ever so slightly to the side, usually to the right side of my jaw. It is very painful when this happens especially since I just had jaw surgery less than a year ago and have osteoarthritis in my jaw. I think the anchors that my surgeon put in helps keep it in place. I just hope they don't give way or anything. I told my jaw surgeon this and he keeps telling me everything is fine. He does know that I have seizures as well. I am just wondering if anyone else has popped a body part out of place during a seizure?

tam bam

 

[Nakamova]

I dislocated my shoulder during a seizure. And then I re-dislocated it during another seizure about a year later. After that, my shoulder kept popping out on its own with no trauma involved. I actually learned how to pop it back in place myself after the sixth or seventh time. Earlier this year I had surgery to repair the cartilage torn by the initial seizures. Fingers-crossed that it holds...