seizure pain or technical term "ictal pain"

[tam bam]

Hello all,

I have been reading since last night on "ictal pain' or sezure pain. I thought maybe everyone experieced this during their seizures but I was wrong and actually I didn't even realize that some of the pain I was experiencing was even a seizure to be honest. I just thought it was something else or I just brushed it off. I am just floored that seizures can come on in all kinds of different ways.

I have been experiencing headaches for years and stomach aches and they say that is a form of ictal pain. Also I pains that come and go with no apparent reason in my body for years and I have had orthopedic drs, neuros, neurosurgeons, etc. look at me and they find nothing wrong or they want to do something drastic to me that I do not agree on. Could this really be seizures? According to what I have read, yes, this could be but when you go into a dr's office with the pain as the only presenting symptom then the dr. is more than likely going to misdiagnose it as something else. As a matter of fact before Thanksgiving last year I had some neck pain that showed up for 2 days and I went to see an orthopedic and he wanted to perform surgery. I told him no and after a couple of days it resolved and now I have no problems with my neck. It is weird. I do believe it was a seizure. I have headaches all the time and stomach aches all the time as well with and without vomiting and when I say vomiting I do mean the projectile kind. I also will have diarrhea with my stomach aches as well. I know that sounds gross but it is true.

Do any of you experience this? I have probably just been reading too much and over reacting but this struck home to me. I have been complaining to dr.s of these symptoms for many decades and they could not figure it out. Now that I know I have epilepsy it all makes better sense to me now. This explains why I get so sick and stay in so much pain all the time. onder:

tam bam

 

[Cint]

Do you consider your headaches to be migraines? Because migraines are in the same family as epilepsy, and I also get migraines on occasion. I do have neck pain a majority of the time, but I think mine is from all the face first falls I've had due to a TC seizure.
And sometimes my stomach hurts so bad I can't eat, but that I feel is from the medication, but sometimes it is also the ictal/post-ictal phase.

Are you seeing an epileptologist?

 

[Rae1889]

I do have neck pain a majority of the time, but I think mine is from all the face first falls I've had due to a TC seizure.

Yeh iget the nek pain and also hip pain afte. I am tol thet I tell people thet mi fingers hirt real bad whan i am post-ctl stage

 

[horsehead]

I do.I have headaches all the time and stomach aches.I also vomit from time to time but i just thought it was due to me having a weak stomach. One neuro surgeon also wanted to do surgury on my neck because of a buldging disk and me having weakness on one side of my body. I had two other doctors look at my mri disk and both said I didn't need surgery.

 

[tam bam]

Thanks for the replies.

I was diagnosed years ago by a neuro that I have mixed headache syndrome but
never felt that was the correct diagnosis. As a matter of fact the last time I saw
that doctor he stated "I hope you figure out what is causing your headaches" so
that told me that he didn't know for sure. This was before he retired. (I now have
another neuro and I am about to see an epileptologist next month.) The diagnosis
was just something he put down on paper so he could prescribe the meds for the
insurance company).

Anyway, Here is how my headaches work. If I have one I will wake up with it and
it is dull then right before a seizure it intensifies to a really sharp pain that I can't
even describe. Almost like someone is stabbing my brain. It is aweful. I can't
think and it knocks me to the ground (literally). That is why I think it is actually a
seizure or the technical name "ictal pain". The same with my stomach. It will
cramp so bad that literally I will seize in the bathroom. It just knocks me out cold!
When this first started happening I didn't actually seize but over the years it
progressed into the full blown seizures with the pain. I just hope the epileptologist
can help with this. Anti-seizure meds have helped with this somewhat that is why
I do believe this is seizures. Also I misunderstood my doctor, he has an accent and
I thought he told me over the phone that he saw my seizures originating in the
frontal lobe well yesterday at our visit he informed me he saw my seizures
originating in my parietal lobe which makes better sense why I would be having
ictal pain symptoms but I am going to let the epileptologist sort this out and really
make sure that is where my seizures are coming from. I think that is the best route
for me right now.

Horsehead: I didn’t know that you where also experiencing stomach and head pain
as well. What does your doctor say about all of this? I wonder if anti-epileptic
drugs will help you any with your head and stomach pain as well. Like I said it is
tough for them to figure out and is often misdiagnosed. I wonder if that is your
case as well. It makes me wonder how many people go through this kind of
suffering before they actually receive the help they need. Maybe we both need to
see an epileptologist. I think Cint is right.

 

[occb]

Mystery pain is the story of my partner's life. A common one he gets is abdominal pain in the right upper quadrant. He saw a doctor about it, and they've not been able to pinpoint anything wrong with him, despite test, after test, after test. Since we hit on the possibility of E, I've begun to suspect it may be ictal pain.

Rae, my partner gets painful fingers as well -- you're the first other person I've come across who has complained of the same thing. He says when he gets it he wishes he could remove his fingers because it makes his brain feel messy and twisted.

 

[Rae1889]

me too. it hurts so bad! but when I squeeze them or sit on them it feels almost better. Like ripping them off would feel much better than when they are there. Its painful and also uncomfortable at the same time/

 

[occb]

Holy hannah! That's exactly what he says about it. You know what helps? A hand massage, especially one where you pull/rub firmly down the individual fingers, to force the blood into the fingertips. The thumb pressure point helps with that too. I discovered that last night when he had the painful finger thing.

 

[horsehead]

Tam pm me and I'll tell you about it.I dont want to steal another thread.

 

[vapour]

Be careful not to blame everything on seizures/epilepsy. Everyone gets aches and pains, people with epilepsy and people without.....

It could also be something else. I get migraines too, and that can cause nausea, also seizures cause nausea.. see.. this is a good example.

Sometimes i get aches and pains and cant figure out why .. then i realize I walked alot the day before.. or lifted something too heavy etc.

The only time I ever get neck pain .. or pain that Im suspcious of is when I wake up first thing in the morning with e terrible headache and body aches.. because I know I have complex partial seizures on falling asleep and waking up.

 

[occb]

My partner has mystery pains, which we think is ictal pain. They definitely cannot be passed off as regular body aches and pains. I'm talking about it feeling like someone just stabbed him in the gut with a hunting knife kind of pain, or tooth abscess pain, or bladder infection pain -- all of which comes and goes mysteriously and suddenly, without doctors or dentists being able to find any possible cause.

It's gotten to the point where my partner feels like a hypochondriac, because no medical professional thinks there's anything wrong with him, and refuse to believe he's in agony.

 

[flinnigan]

Stomach pain was a big part of my simple and complex partial seizures. They would start with a deja vu and then progress to a heat sensation in my stomach that would spread through out my body finally ending with stomach cramps. When it was over I would have diarrhea for a few minutes sometimes even hours. I also have a lot of general body pain. My mom and sister have both been diagnosed with Fibromyalgia it could be that but I feel they may be related, just another type of over active nerve disorder.

 

[Nakamova]

There is a kind of epilepsy called abdominal epilepsy where sharp stomach pains are one of the symptoms. I think it's usually associated with temporal or frontal lobe epilepsy, and is relatively rare.

There's also a disorder called porphyria that includes both seizures and sharp abdominal pains among its symptoms. Below is a list of symptoms of porphyria from wikipedia. If it sounds like what anyone is experiencing, they should definitely get checked out right away.

Symptoms of Acute porphyria:
The acute porphyrias primarily affect the nervous system, resulting in abdominal pain, vomiting, acute neuropathy, muscle weakness, seizures, and mental disturbances, including hallucinations, depression, anxiety, and paranoia. Cardiac arrhythmias and tachycardia (fast heart rate) may develop as the autonomic nervous system is affected. Pain can be severe and can, in some cases, be both acute and chronic in nature. Constipation is frequently present, as the nervous system of the gut is affected, but diarrhea can also occur.

 

[occb]

Acute hepatic porphyrias tend to present with a drastic change in urine colour -- deep red, purple or blue, or difficulty in urinating. King George III of England was said to have porphyria which led to his sporadic bouts of madness.

Focal epilepsies can cause painful auras in the abdominal region, and more often in certain kinds of focal epilepsies than others.

 

[Malla]

Acute hepatic porphyrias tend to present with a drastic change in urine colour -- deep red, purple or blue, or difficulty in urinating. King George III of England was said to have porphyria which led to his sporadic bouts of madness.

Focal epilepsies can cause painful auras in the abdominal region, and more often in certain kinds of focal epilepsies than others.

Yes, but also green urine/green stool.... black stool and dark urine. Depends where you are in the attack. Porphyria is not 1 disease. Its 8 different diseases with the same common factor, deficiency in the heme production components.

 

[jemsister]

I have major stomach issues, but they don't really come and go, so I'm guessing they are not seizure related. I do get headaches though, usually in one temple (I want to say the right), which I think is technically a migraine type headache, right? As far as seizure pain, though, I have very painful simple partials. Most of the seizure pain I get is in my teeth and my legs. But what you are talking about sounds different. I have never heard of Ictal Pain, this is a fascinating thread.

 

[Malla]

I have major stomach issues, but they don't really come and go, so I'm guessing they are not seizure related. I do get headaches though, usually in one temple (I want to say the right), which I think is technically a migraine type headache, right? As far as seizure pain, though, I have very painful simple partials. Most of the seizure pain I get is in my teeth and my legs. But what you are talking about sounds different. I have never heard of Ictal Pain, this is a fascinating thread.

If youre talking about Porphyria, attacks can last a week to months,.... lower stomach pain, lower back pain, pain in the legs and arms, headaches, nausea and vomiting, constipation, diahrea and dark colored stool /urine. Colors can even be green.... Some acute forms of Porph also has seizure activity in addittion to the painful attacs. Some types of porphyria, the VP and the HCP type, includes both neurological and cutaneous (skin) problems. like sensitivity to the sun.

 

[jemsister]

Hmm, I will have to google Porphyria and see if the symptoms match. None of my doctors have ever brought it up to me.

 

[Malla]

Hmm, I will have to google Porphyria and see if the symptoms match. None of my doctors have ever brought it up to me.

Thats because they dont know what it is.....oh well many of them atleas dont have Porph as any option to seizures. I was admitted to the best Epilepsy hospital in Denmark, Filadelfia for 2 months, they concluded with pseudo seizures. That diagnosis could have killed me. I am now being diagnosed with Porphyria.


Do not trust doctors blindly.

 

[jemsister]

Oh man, tell me about it. One neuro wanted to raise my Tegretol when I was having more breakthroughs and horrid side effects. Went for a second opinion, and it turned out the breakthroughs and side effects were because my dose was too high. Then another neuro had me up to 2800 mgs of Trileptal a day, and I was having debilitating double vision and when it was at its worst I couldn't even walk from being so drunk-like, not to mention tons of breakthroughs. Went to a new neuro, and my levels were in the toxic range! I improved a great deal when she reduced my dose.