My 10.5 month old had seizure like activity about 2 months ago. He had 3 episodes over the course of 2 days. He had an mri and we discovered that he had cm1. He hadn’t had anymore episodes til last night. It lasted 1-2minutes and after wards his faced twitched several times for approx. 10-15 min. It almost looked like a spasm. Has anyone else experienced this either personally or with their children?
I had this for a few months, my ones were pretty much whole body spasms that could last for over two hours but I remained fully conscious, does your baby keep his eyes open? I went to the doctor and I was put on anti spasmodics (I can get the name for you if you like because my little cousin was born with severe brain damage and he suffered seizures and we were both on the same ones) They helped an awful lot and mine have completely stopped since the surgery but the tablets helped me so much with the spasms/conscious seizures! Hope this helps!
My husband is on tizanidine for full body spasms. His doctor believes they are caused directly by his Chiari. He explained it as Dustin’s brain sending a lot of signals to move all at the same time, it looks like a seizure but it is different somehow, he calls tham spasms not seizures. Dustin’s are pretty bad, the night they started we took him to the ER and he coded quite a few times.
Hello - this started happening to me just over a year ago and it is worse now. I find they are not painful UNLESS the jolts cause me to move in a way that my body can no longer can - in addition to jolts - the best way to describe it is electrical shock...it grabs ya n jots ya
I tried to be brave and went for a hike - I knew instantly that the nerves were being pinched (seems to be from the back) but it's actually the neck - it happens with exertion - like if I turn my head the wrong way (i don;t have a lot of range). The more pressure on the spine - more the upper part or back -the worse the jolts or spasms. Sometimes you only have to turn slightly and these jolts come right from the head/neck area. Rest is the only thing to help - I lay down to allow pressure from my neck - i also find it gets worse as the muscles ease until they neck is completey rested.
I have them. Not very often but once in awhile. They are like grand mal seizures except I am conscious and aware of my surroundings. Because I’m aware during them, my doctor called them pseudo seizures and said it was all in my head. This is the first tine I’ve seen anyone discuss this. I hope everything works out well for you and your little one.
Hmm my 16 year old daughter said she felt like she had a seizure before she blacked out I thought it was odd that she would have the seizure that she would remember before she blacked out instead of after maybe the same thing?
I also blacked out - on a different occasions though - it was due to lack of oxygen to the brain as a result of the muscles tightening around my lungs
for the record...working out the muscles around the lungs (upper back) it will help breathing and future issues - the passing out was one thing but i was diagnosed with emphysema when I was 26...if my parents knew what I know...
My Neice had seizures. The NS assured my sister that decompression would not stop the seizures, but low and behold after her first decompression the seizures stopped. Has he been checked for tethered cord? My Neices other symptoms came back past surgery and she was found to have tethered cord as well. When she had seizures she had drop attacks and speed breathing as well.
I didn't mean speed breathing, I meant STOPPED
breathing.
I was having seizures prior to being diagnosed. I was told I had didn’t have epilepsy and at the time they were unsure of the cause. I was finally told by another doctor that I had Chiari but it wasnt serious due to size. My headaches, pain and seizures continued. I searched for further opinions and finally had a doctor who listened. I had decompression surgery in February. Since having surgery I have only had a few seizures when I was having sometimes 3-4times a month. My docitr said I won’t know for sure how well the surgery went for approximately a year. It hasn’t taken it all away but definitely better than where I was this time last year.
I truly believe it was the compression of the spine. I had a registered masseuse work out the muscles (an ongoing thing) and he attempted to loosen the sciatica - I began spazzing ten fold and the pain was out of this world - the same thing happened when I attempted to use a decompression table (Not a good idea UGH) :(
I hope you niece gets well soon as well as your little guy ONE :) My prayers are with you all! God Bless
pebbles said:
My Neice had seizures. The NS assured my sister that decompression would not stop the seizures, but low and behold after her first decompression the seizures stopped. Has he been checked for tethered cord? My Neices other symptoms came back past surgery and she was found to have tethered cord as well. When she had seizures she had drop attacks and speed breathing as well.
pebbles said:
My Neice had seizures. The NS assured my sister that decompression would not stop the seizures, but low and behold after her first decompression the seizures stopped. Has he been checked for tethered cord? My Neices other symptoms came back past surgery and she was found to have tethered cord as well. When she had seizures she had drop attacks and speed breathing as well.
He has had a cervical and thoracic mri but has not had a lower spine mri....
I really would consider having the lumbar MRI done as well, at least to rule out a tethered cord. I guess tethered cord is pretty common in Chiari patients. My niece had that surgery last month. The Dr seemed to think the cord surgery should fix her symptoms. Time will tell. Hopefully this will be her last surgery, I can’t imagine what she and my sister have gone through. My niece is only 6 and this was her third surgery. 2 compressions… I am so thankful my daughter hasn’t needed surgery yet…
has you son been checked for dysautonomia I know that can cause seizures. I am sorry you and your family have to deal with this. I am not sure if they can check it at his age. what about his bloodwork? It might be a good idea for them to through it .
I have had seizures and spasms for a while now. I take Keppra for seizures, which have practically stopped them, and I take Baclofen for spasms. They seemed to help, but I have noticed some side effects with Baclofen that are uncomfortable. I don't take that med every day, just when the spasms are really bad. I try to walk every day and will be going to PT for some weeks. Remember to live each day with gratefulness. I thank god, even when I feel at my worst, that he gave me life, so that i might help others in need. Hang in there all. My prayers go out to you all!