I was diagnosed and treated for an AVM serveral years ago. I now have(and don't know if any connection)..speep apnea which is hard for me to treat, seizure disorder which seems controlled by med. These are my unusual symptoms these days. I will awake with a jolt, and then feel paniced, then find it hard to swallow and gulp a few times) This will happen during the day sometimes too. It lasts for a minute or so.
Any ideas? Misery loves company!
Hi Mary! Wow that is frightening,but I know the feeling.I too have a seizure disorder and also have woken up during the night,because I stopped breathing.
Have you had a brain MRI recently?I ask because I have several things going onand I found out in Dec.'06 that I also have a Chiari I Malformation(which is a bit of the cerebellam slopes into the spinalcanal.One of the symptoms is feeling like your gagging and also having sleep apnea.Don't mean to scare you about that.
What med are you on for the seizures? Right now I'm not taking anything,because I have to have another EEG.The first drug for seizures that I was on was dilantin...it worked great,but I did go thru a horrible withdrawal from the valium that they had me taking with it(yuck!).Years later this other dr. put me on klonopin and it messed me up so badly.So then my seizures changed and now they are going to see what's going on....too complicated for me....grrrrrrrr!I once went 3 years without a seizure and before that I had them consistently for 3 years...so it seems I was on a 3 year thing....go figure!I haven't had one since November last year...so I'm thankful for that!
Anyways what is AVM?
Sorry I couldn't help much here,but it's nice to meet you!
I had these symptoms for a year - I even periodically had excessive salivation, at times my head would roll over, I would have the sudden jolts, I would forget how to swallow or breathe. I finally got to Stanford and was diagnosed with shingles of the Central Nervous System - never had a single blister on the outside. Rare but occurs.
Get tested for Varicella viral antigen levels - see if it indicates a shingles or any viral reactication - Go to an infectioous disease Doc to get the viral tests if you can. - someone that knows how to interpret. If it is Varicella they will put you on Valtrex. Saved my life - but I wish I had it diagnosed sooner before the perm nerve damage. GO GET TESTED.
Welcome to the boards, Mary! Your symptoms are pretty typical of sleep apnea...I have been diagnosed with and am being treated for sleep apnea so I can speak from experience. When we stop breathing due to obstructive or central sleep apnea, the oxygen levels in our body drop...our brain "realizes" this is happening and jolts us awake so we can breath again. When we're very low on oxygen (as in after an apnea event) we can experience feelings of rapid heartbeat, breathlessness, and anxiety! The swallowing thing is connected, too, but I will not take the time to explain it here.
You say your seizures are controlled with meds...that's good so it doesn't sound like the apnea is contributing to the seizure problem. But just for the sake of other readers, seizures can "accompany" some sleep disorders.
How did you get a diagnosis of sleep apnea? Did you have a sleep study done at a reputable sleep center? If so, what was the specialty of your sleep specialist? A cardiologist? pulmonologist? ENT? allergist?
Why do you say your apnea is difficult to treat?
You may find that the posters on the Sleep Disorders Boards would have more personal experience with the symptoms/conditions you have. Hope to see you over there!
PS Low oxygen levels would contribute to additional problems/risks with AVM I would think!