Hello all. I haven’t been active lately, and I have missed chatting with you all. I have had something new happening and I’ve done a little bit of research on this, and I’m not sure what I should do. So I woke up one morning a couple of weeks ago biting the tip of my tongue really hard. It hurt for days. I had never had this happen before. I thought it was just a fluke, but it’s been happening more frequently. I read online that there are several things that could cause this, one being night seizures. Considering my medical history, I feel that this might be what’s happening. However, I had an EEG done back in October and they say it was normal. I haven’t had the opportunity to speak with my neurologist in depth about the test results, and I haven’t contacted him about this. Has anyone else had this happen? Would you recommend calling my neurologist, or just talking with my PCP about it? Thank you all for being so supportive and encouraging. I wish you all the best and I will try to be more active on here. You guys are a great support system, and I cannot express how much I need that right now! I look forward to your feedback. Many blessings to you all!
Hope you’re having a good Christmas holiday, other than the biting. (I can’t think of anything more painful!)
Since you’ve not discussed your EEG results with the neuro, my temptation would be to reach out to him or her and discuss both things. In the UK, if the trail has gone cold, you always have to start back with the primary care doctor, but if there is still an interaction going on, I’d say take it up with the neuro; and I guess it works quite differently in the US.
It does sound like a common seizure issue which either doc would be able to advise on.
Thank you for your reply! I hope you had an amazingly Christmas and new year! My neurologist said my EEG & scan were both “normal”, but that was it. I apologize if I’m repeating myself, I didn’t read my original post. I am going to call him and ask what he thinks. I don’t understand how my scan could be normal, the AVM wouldn’t just go away, right? My primary care doctor won’t do anything! And I don’t know what’s going to happen with insurance. It’s a mess here in the US right now, and things are a bit messy here at home, so as of right now I don’t have any insurance. Hopefully that’ll get worked out soon. Thanks again! I will try to remember to come back and post if I get any news! You guys are all awesome and I really care about you all, my life has just been so chaotic that I can’t remember to do anything lately! Best to you and yours!
To be honest, I’d expect EEG results to be normal – I think they show the electrical stimuli from brain activity – so your brain is working ok / showing normal levels of activity in the affected area perhaps. The brain tissue is not dying off through starvation of oxygen, so that’s good. But I’ve seen very few people say they have an EEG done, so I don’t know what to expect, really.
I think we had a good Christmas but my family disagree with me! It was going really well until my son went to hospital with a head injury, having fallen off his new skateboard. He had been wearing a helmet but face-planted the pavement, it seems. So, young master D and Mrs D spent the night on Ward 10 into Boxing Day! He had some amnesia, which was worrying, and he was rather euphoric but time has proved to be the necessary cure.
Very best wishes for the new year and sorting out your insurance!
This has happened to me 3/4times since September last year, I wake up biting hard on the tip of my tongue too. It hurts like you say! I thought maybe I was clenching my teeth really tight at night and my tongue was sometimes getting in the way but then, one morning, I woke up in a very odd place in the bed and my head and shoulders were hanging off the side of the bed. I had never woken up in a strange position like that ever before in my life and I woke up biting my tongue hard. I couldn’t believe it when I read your post as I thought it was only me and wasn’t sure if it was relevant or not.
Wow! Yeah I thought maybe I was clenching my teeth, but I’ve had that before and never bitten my tongue. I googled it and found that the main cause for this is seizures. I’m very confused though because my neurologist suspected that I was having mini seizures but said my EEG came back normal. He also said my scan was normal, yet as far as I know AVM’s cannot just go away? And he was talking about options to remove the AVM to prevent another hemorrhage. Let me see if I can find the link where I read that I was referring to about the tongue biting. I know for me it hurts for days afterwards!! It’s unfortunate that you’re having this happen, but I guess in some way comforting to know I’m not the only one? I wish you the best!
Here are a couple of links, which both mention teeth grinding as a reason, but both have seizures listed first. I know I’ve had some issues with teeth grinding, but never this until recently, and I don’t have other symptoms to make me think I am grinding my teeth?
Then I found this excerpt “A nocturnal seizure disorder causes abnormal movement or behavior during sleep. You may wake from sleep to find yourself violently moving your arms and legs, biting your tongue, or experiencing loss of urine. You may also thrash around or feel confused. Nocturnal seizures are a form of epilepsy, a disorder caused by abnormal electrical activity in the brain.” on Night seizures
I’m not trying to self-diagnose, it just seems odd that it’s never happened before and I’ve been having other strange symptoms that seem to be related to the AVM. I need to check with my neurologist but keep forgetting, and after the 15th of this month I have no idea what I’m going to do for health insurance! I hope I can remember to call Monday and they can see me or do something before then! Best wishes to you!
Thank you for the information. I will have a read of it now. Hope you can get sorted soon. Awful living with all of this. Helps to know we are not alone though x
I still haven’t been able to reach my neurologist to talk about this. I no longer have any insurance, so I don’t know what I’m going to do. If you’re able to find out anything about the issue, please share. Take care!
I’m sorry I can’t offer suggestions as I don’t know the options in the uS system. I can’t certainly imagine your frustration and hope someone will be able to offer some suggestions. Will be thinking of you, stay strong, John.
Thank you John. I was just curious if the other person who has experienced the same thing had talked to their doctor about it and what information they were able to get if so. I really appreciate everyone’s kindness!