Cholinergic Urticaria and Complex Partial Seizures
Post by: Cleopaddera on March 02, 2010, 09:54:07 PM
Hi! Just found this forum and read an article on Cholinergic Urticaria and Seizures. I am 50 years old and have had Cholinergic Urticaria and seizures since I was about 8 years old. Only recently did I even consider that they might be related, but I really do think there is a connection.
My Cholinergic Urticaria is better than it used to be. It started calming down when I was about 35 to the point that I can exercise as long as I pace myself. It is so wonderful to exercise!
When I was younger I ended up in the emergency room quite often after gym class or after a few minutes out in the sunshine or after being forced to take a hot bath, etc. If someone tried to cool me down by putting a cool wash rag on my forehead it about killed me. I also had massive swelling of tissue to the point my eyes swelled shut and my tongue, lips, ears and everything else itched and hurt terribly. I know I looked like some kind of monster, but none of my classmates ever made fun of me that I am aware of. My junior high made my mother take me to a doctor because I practically lived in the nurse’s office. When I was 29, I even coded when injected with radioative iodine for a xray. My insides felt like a blast furnace. There is simply no way to adequately describe how it feels to have a Cholinergic Urticaria attack.
My seizures have become worse over the years, especially the past year. Even as a child, after a Cholinergic Urticaria attack I would have out of body experiences, hallucinations, extreme weakness and loss of consciousness to name a few things. I have abnormal EEGs.
Does any of this sound familiar to anyone else?
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Title: Re: Cholinergic Urticaria and Complex Partial Seizures
Post by: thecheezit on March 03, 2010, 12:48:24 AM
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Quote from: Cleopaddera on March 02, 2010, 09:54:07 PM
Hi! Just found this forum and read an article on Cholinergic Urticaria and Seizures. I am 50 years old and have had Cholinergic Urticaria and seizures since I was about 8 years old. Only recently did I even consider that they might be related, but I really do think there is a connection.
My Cholinergic Urticaria is better than it used to be. It started calming down when I was about 35 to the point that I can exercise as long as I pace myself. It is so wonderful to exercise!
When I was younger I ended up in the emergency room quite often after gym class or after a few minutes out in the sunshine or after being forced to take a hot bath, etc. If someone tried to cool me down by putting a cool wash rag on my forehead it about killed me. I also had massive swelling of tissue to the point my eyes swelled shut and my tongue, lips, ears and everything else itched and hurt terribly. I know I looked like some kind of monster, but none of my classmates ever made fun of me that I am aware of. My junior high made my mother take me to a doctor because I practically lived in the nurse’s office. When I was 29, I even coded when injected with radioative iodine for a xray. My insides felt like a blast furnace. There is simply no way to adequately describe how it feels to have a Cholinergic Urticaria attack.
My seizures have become worse over the years, especially the past year. Even as a child, after a Cholinergic Urticaria attack I would have out of body experiences, hallucinations, extreme weakness and loss of consciousness to name a few things. I have abnormal EEGs.
Does any of this sound familiar to anyone else?
Sorry to hear you have Cholinergic Urticaria and seizures.
I don’t think I have heard of someone getting seizures from Cholinergic Urticaria, I know some people can pass out due to not being able to cool down etc.
I don’t think they are correlated though, most likely two different things going on with you, but who knows there is such little research on Cholinergic Urticaria so it’s hard to say :-
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Title: Re: Cholinergic Urticaria and Complex Partial Seizures
Post by: HivesGuy on March 03, 2010, 05:35:41 AM
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Hello Cleopaddera,
Excellent post and welcome to the forum.
I am very sorry to hear that you have to deal with both Cholinergic Urticaria and seizures. I know that must be very frustrating. I totally agree with you when you said that no one quite knows what a Cholinergic Urticaria attack is like. It is really intense and almost traumatic if I am being honest.
Have you had Cholinergic Urticaria consistently since 8? Or have you had periods where it went away? I have had friends with seizures, and I know what a challenge it can be living with that too. I can’t imagine how frustrated you must have been so many times.
I am so glad that the kids never made fun of you at school. That surprised me because kids are usually so cruel and often mock other people (I had my share, but it wasn’t about Cholinergic Urticaria).
About the connection between Cholinergic Urticaria and seizures–I don’t have seizures, and I know the majority of people on this forum have never mentioned it. I think I know the article you are referring to, and I thought that was indeed interesting myself. There is always a possibility that there is a brain abnormality which causes Cholinergic Urticaria, and that same process could also cause seizures. That is certainly possible. But at this point in time, I wouldn’t say that seizures necessarily increase the chances of getting Cholinergic Urticaria. I know a lot of people with seizures that have never had Cholinergic Urticaria, and a lot of people with Cholinergic Urticaria that have never had seizures.
So in my opinion, it is likely more of a coincidence than a causative factor.
Also, I found the out of body thing highly interesting. I know that scientists can sometimes reproduce those via certain medicines, but the people who have them often think they are real. Those have always fascinated me. If you don’t mind me asking, do you feel the out of body thing was merely a hallucination? Did it feel real? Do you think you were literally out of your body?
Anyway, thanks again for the great post.
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Title: Re: Cholinergic Urticaria and Complex Partial Seizures
Post by: Cleopaddera on March 03, 2010, 06:08:46 AM
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Hi HivesGuy,
Traumatic – How I so agree that many of my UC attacks have been traumatic. These are the ones during which I had out-of-body experiences. Most of these were just a sense of floating above myself during which I did not feel the heat or pain. I had a full-blown NDE after coding during the xray – out-of-body, being greeted by a tall man dressed in white named Frank, traveling through a “tunnel” though it seemed more like traveling at a great speed to me, review of life, etc. This was very real. The ob experiences I do believe are real to a great degree in that my perspective changed but not my surroundings.
My Cholinergic Urticaria was pretty consistent until I was about 35 and it slackened off quite a bit, but this is when my seizures began getting worse. I have a catalyst event from when I was 8, or at least I associate an event with the beginning of my Cholinergic Urticaria and seizures but it is a child’s memory – I was attacked by a swarm of bees. I had a severe allergic reaction at that time with similarities to Cholinergic Urticaria.
Something else I’m having problems with that sets of seizures and weakness is my body does not seem able to regulate body temperature well anymore. If it is cold outside, I become bone cold myself with severe weakness.
Seeing a neurologist now so maybe more answers in time…. Oh, I’m not questioning whether or not UC causes seizures. I’m wondering if UC could be a seizure for some people. Many of the symptoms of Cholinergic Urticaria are also symptoms of complex partial seizure disorder.
Also curious if anyone with Cholinergic Urticaria has myasthenia gravis?
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Title: Re: Cholinergic Urticaria and Complex Partial Seizures
Post by: HivesGuy on March 03, 2010, 06:35:15 AM
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Wow, that NDE sounds really fascinating. My wife has talked to people at her work before (she is a nurse), and they have had really interesting NDE stories.
I am glad that the Cholinergic Urticaria did slack off for a while, although, I am sorry to hear that your seizures did pick up in intensity. I know that must have been “bittersweet.”
I hate bees! I got stung this past fall, and I always run from them, which is a bit shameful for a grown man to admit =).
I am glad you are seeing a neurologist, and I hope that perhaps they can find a cause, or at the very least, offer you a safe and effective method of controlling the seizures better.
About the Myathenia gravis, I looked it up and I don’t have any of those symptoms. Does anyone else on here have it?
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Title: Re: Cholinergic Urticaria and Complex Partial Seizures
Post by: HivesGuy on March 03, 2010, 06:23:30 PM
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I agree cheezit,
Those are interesting. I have always thought these near death experiences are really neat. Some people remember extraordinary details about the experience, and they all seem to say the same thing: Bright lights, a tunnel, religious experiences, seeing loved ones, feeling extreme happiness, etc.
In fact, my wife was talking to someone one time that said they were dying, and brought back to life. When they came back, they were so mad because they said it was the most beautiful thing they have ever seen and didn’t want to come back to this world.