after being dx'd with chiari 1 last week, I have been looking into things.
Especially my episodes of coming over feeling very strange for short episodes. These 'episodes' vary but are usually the same. I come over feeling strange but also unwell in that I do not feel right - a bit like when you have a very high temp and you are not 'with it'. When this happens I tremble in my arms, feel nauseous, cannot judge where things are, find it hard to have a conversation as I cannot remember my words or take things in, and I just need to lie down and be quiet. It doesn't last long but I don't feel good for a while after. One time I couldn't pick up a spoon, another time I couldn't put something in my pocket, I can't judge where things are when reaching for something and another time, I could hear words but they made no sense.
A couple of these episodes I felt highly uncoordinated in my arms and legs.
Despite all the excruciating headaches, vertigo, numbness etc I would say that this is the worse symptom for me but what are they...?
I hope someone on here can help me as I hate these episodes :(
I have had these and the nl said it could be a form of seizures BUT. When they did an EEG my brain showed normal I have a totally uneducated theory I think it has to do with our blockage of csf fluid but I am SURE I am wrong but I have those same symptoms except there is a brain āvibrationā that goes with it it has been harmless and tends to come with stress and exaustion so donāt push yourself and listen to your body
Do these episodes happen when you are having severe pain? There is a member here that experiences seizure like activity when she is in awful pain..say , pain scale 0-10..she will have an episode when her pain level is past a 10..she has told me it is so scary.
I am sorry you are dealing with this. I was just wondering if it came out of the blue or during intense pain?
Have you been d'xed with seizures? this doesnt sound like seizures, although I do not know what it is. I say this as I have epilepsy, I am so sorry that you are going through that, if it is seizures I know mine are very well controlled with meds
Hi Robin, no I haven't been dx'd with seizures. I was reading about simple partial seizures and wondered if you could get these with chiari. It must be bad to have the full blown epilepsy (esp on top of chiari :() but at least you have them under control.
Lori they seem to come out of the blue, most have seemed to come on when I have been up and about but it has happened when fully relaxed too. I do get the feeling that is usually the start of these episodes, feel unbalanced or unsteady, maybe disequilibrium? or just strange and that can be transient but then sometimes it carries on and gets worse but fortunately that is not often.
Hey Brandi, that's interesting. The neuro was saying my orthostatic headaches were caused by a lack of csf. I also have autonomic dysfunction and get blood pooling in my legs which can cause lack of blood flow to the brain. Could it be combination of the two maybe? I hate that feeling....
Now I know the reason for my symptoms, I actually rest when I feel bad - because I was told the symptoms were all caused by anxiety, I kept going and going thinking maybe I was stressed but without knowing it!
I would like to know what it is though.
Thanks for all the replies...and your support....this site is great x
I get what I call a flip flop!! So maybe a wobble. Just feels like my brain has flipped over and back again - very strange. Have you had any surgery Brandi?
No surgery Iām still going through the dr elimination of other things because of so many symptoms. Last week was a lp went wrong followed by this week of a blood patch and cine MRI and brain flow study I think Iām coming down to the wire but I am grateful for the elimination NOT grateful for the damage that has been done while waiting I also have a syrinx and thorasic spinal stenosis as a result of the chairi and I feel the longer they wait the more damage is getting done but what can you do. Just smillllllle and bless their hearts lol
It does cause a very strange sensation, but an EEG should be able to determine if you are having seizures, I had one major one that caused a car accident (blacked out, and we didnt know I had epilepsy) but the rest of my seizures were body jerks that made me drop things, bite my tongue, or make my legs go out and cause me to fall. I would get a strange sensation in my head that I cant really describe but I know its related to the epilepsy, its very specific feeling. The reason it doesnt sound like seizures to me is bc they dont cause nausea, shaking (getting the "jerks" are completely different than just shakey hands and such), not sure about misjudging where things are, but I did always feel disoriented after a seizure, I cant remember what I was talking about, and have major short term memory problems. I am not a dr or an expert, so this is just from experience and other friends with seizures, but its clear that something isnt right, so I would just request a brain MRI and an EEG. For me they said based on the MRI that I already had a predispostion for seizures, we think what triggered them to come out was being on welbutrin, which is well known for causing seizures, I just didnt know that.
I have the same episodes in a sense. It is brought on by stress usually. I had an EEG that was normal, so there was nothing they could do but wait. I get very confused at times as well and a lot of noise makes me nauseous and gives me a headache. I haven't had a lot of severe headaches like I did before my surgery, but I do have "migraines" once in a while. I've noticed just last night at a restaurant, that right now I need to stay away from a lot of noise. Back to the seizures, I have noticed that I get headaches just before the "seizures". We just have to ride them out and let the docs know when they happen. It takes about 4 hours for my "episodes" to stop. I get to the point where I can't stand or walk and my arms and legs curl up and get rigid. All this doesn't happen for 4 hours, but I can't walk for that long. I have a hard time staying alert during these episodes, but after about 10 minutes I know where I am and can name most of my meds, so the medical personnel, don't really understand. My short term memory though, is getting worse because of these episodes. Praying for you. Hang tough!
Sabrina
Your āseizuresā sound a lot like the one I just had except mine was shorter duration. I couldnāt stop shaking and chattering my teeth so hard that I could barely talk without biting my tongue. Have you had any surgeries for this?
Just finding this thread and I am extremely interested in this information. My daughter was diagnosed with Chiari in August 2019 and more recently with a slew of other ādiagnosesā including Myoclonic Disorder and Transient Alteration of Awareness. Someone pointed out to me that these were in fact more symptoms of the Chiari diagnosis rather than diagnoses of their own. She has similar episodes with a general overall ānot feeling well or herselfā that she is unable to really explain much better than that. I have noticed however that during this episodes, she has difficulty finding the right words or expressing herself. She often seems ālost in thoughtā but cannot remember actually thinking anything. She looses simple words like names of body parts or simple numbers to express her pain scaleā for example she may hold up 6 fingers but say the word 7. I should add that she is an extremely bright honor roll student who was in the gifted class in her grade. She is 11. I attribute all of these things to her brain processing problem and find that some of the things youāve all described similar to some of her experiences. To my knowledge there are seizures that do not present like what most people think of when they hear the word āseizureā. Thoughts?? I realize this is an older thread but Iām very interested in your experiences.
God bless you allā Angel
