I was recently diagnosed with chiari 6mm and have been experiencing intense pressure in the back of my head. these past few weeks I have been having was seems like simple seizures. When the pain is real intense my head will tilt back slightly and I lose control of my facial features. my mouth will open and i feel unable to speak. it usually only last about 20 seconds but has been occurring frequently these past few weeks. yesterday i was driving when it happened and had to pull over. luckily my husband was with me and was able to drive after that. he said he was really scared because he watched my head tilt back and the blank look on my face and he kept asking what was wrong but i could not answer him. i never lost awareness and i could hear him but could not respond. has anyone else experienced symptoms like this.
dear Nicky I have seizure but not tilting back but tilting front, have you been seeing any doctor at all, make sure you see ask to be refer to specialist..to check what it is..so that they can give you something to manage your condition..if it is CM? Yes my pain is so excruciating it will last between 30 - 40 second but I can't do anything sometime I pass out..I already been diagnosed the pain is in occipital, well I hope the sooner you see the health care professional the soonest you can get help and ease your pain, god luck
Hey Nicky,
I too have seizures that I attribute from Chiari. It usually happens when I am over- stimulated like with bright lights, too much noise or too much stress. I starts with an aura (which is like a warning sign), so I know when it is going to happen. During seizure I become confused, my head hurts badly and then I am just too weak to talk or stand up. I know what’s going on around me, but I can’t respond. It last for about 5-7 min. I then come out of it tired and a little weak. I may sleep for about 15 min after or just relax and then I am actually back to normal. I take Trokendia for migraines but it’s also for Seizures and I take Diamox to decrease the pressure in my head. They seem to keep the seizures far and between. I would get an EEG done. If that doesn’t show anything then get a 72 hr video EEG done. That’s what detected my seizures.
Good Luck!
Hi Momof4 , I can't help but noticing your post here, have you had the operation yet and still have this symptom? if you have did you not go back to your neuro surgeon about it if you have not had the surgery dont you want to have one? Momof4 said:
Hey Nicky, I too have seizures that I attribute from Chiari. It usually happens when I am over- stimulated like with bright lights, too much noise or too much stress. I starts with an aura (which is like a warning sign), so I know when it is going to happen. During seizure I become confused, my head hurts badly and then I am just too weak to talk or stand up. I know what's going on around me, but I can't respond. It last for about 5-7 min. I then come out of it tired and a little weak. I may sleep for about 15 min after or just relax and then I am actually back to normal. I take Trokendia for migraines but it's also for Seizures and I take Diamox to decrease the pressure in my head. They seem to keep the seizures far and between. I would get an EEG done. If that doesn't show anything then get a 72 hr video EEG done. That's what detected my seizures. Good Luck!
Yes! I have a similar experience and my head goes backward as well. It is like all the muscles in my neck seize up and pull my head back. I have muscle spasms and twitching. You are not alone!
I have had what they thought were seizures but my recent neurologist told me my syrinx goes from c2 to t1 in my neck and it's causing spasticity in my extremities. I have had almost the same symptoms as you. I go for a 3 day EEG on October 19th to rule out seizures. My prayers are with you.
I too have seizure like symptoms. All tests say I am not having a seizure. However, I get so confused. I no longer drive at all it scared me too much. Twice now I have been away from home doing shopping and I have gotten confused and have not known where I am. Thankfully my husband makes me keep this huge navigation device in my truck. When it happens I do not know where I am I also have problems using the navigation device. So he has to tell me what to punch in and then follow it home. And he keeps me on the phone when this happens. It is very scary.
Hi, Nicky, and everyone else who replied here! I too experience this when I'm under physical or emotional stress. It starts with breathing becoming more and more difficult, then body just goes non responding, but awareness stays. I thought they were panic attacks. Aren't they?
Hi There, I was advice by my health care pofessional not to drive when I have an attack as the insurance would not cover it. So it might be wise to stay at home, because I can feel what kind of day I am going to have , with me it depending what kind of night I have, if I have a good night sleep without waking up due to excruciating pain the next morning I normally doing ok and can manage fine..well not as normal healthy people..however I will b braved to drive, otherwise I will not take a chance to put my life on the line.
travelerbroken said:
I too have seizure like symptoms. All tests say I am not having a seizure. However, I get so confused. I no longer drive at all it scared me too much. Twice now I have been away from home doing shopping and I have gotten confused and have not known where I am. Thankfully my husband makes me keep this huge navigation device in my truck. When it happens I do not know where I am I also have problems using the navigation device. So he has to tell me what to punch in and then follow it home. And he keeps me on the phone when this happens. It is very scary.
Thank you to all the responded. I had my first appointment with a neurosurgeon today. He told me from looking at my MRI that he was not concerned about any restricted flow to CSF so he did not think my chiari would have anything to do with my "seizure like" episodes. he told me that since he just deals with the surgery part that I need to see a neurologist to further determine why I am having these episodes. This is all so frustrating as it will take another 2 months before I can get in to see a neurologist....... I am happy that he is not concerned with the CSF flow but I just want to know why this is happening to me. I also have other symptoms as well that seem to be unexplained. again the neurosurgeon did not think they were related to the chiari. At what point do you keep pursuing to try to figure out what is wrong or just deal with the symptoms? my insurance has a high deductible and I pay $50 for every MD visit. My daughter has a chiari and syringomyelia and we pay $3000 every year for her MRI. I am feeling a little helpless right now. Any thoughts or suggestions on what to do next ?
Thank you for sharing. In my opinion, with the experiences I have had with doctor's, you need to find a NS that understands chiari. It can be an exhausting process. I went through a few, being told it was all in my head and they really pushed meds, but I knew it was real and I found a great doctor. He is retiring to travel and teach other doctors about chiari, so I am starting the process over to find a doctor. I wish you all the luck on your journey and hope you find someone that gets it and will listen to you!
I had one these episodes this week that was really bad. I fell out in a store it hit me so hard. I ended up in the ER in the city and it was a nightmare. I was there for MANY hours and was offered a antihistamine. Its so hard to make others that do not KNOW how bad we are affected with strange things happening to us we have no control over.