lurking around for a couple months now, and finally decided to introduce myself

[MouseyMouse]

hi: a little back story about myself... I've been having seizures at night for the last 8 years. I was injured in a skiing accident and a couple weeks after the accident I started having these seizures. They've only been at night though, so I haven't really spoken to anyone about them. It's become this.... non-topic... I don't know how to approach my family doctor about this because it's been 8 years now.

My seizures are enough to wake my boyfriend up out of a sleep. He says that I stiffen up as stiff as a board, and that lasts for the whole seizure. About 30 seconds into the seizure I start "holding my breath" and that carries out the rest of the episode. After I come out of the seizure it takes a bit for me to start breathing again, my boyfriend says I scare him sometimes.

With airway being the number 1 priority in first aid, the first time I had a seizure where I held my breath he said it sounded like I was choking, because I was making a gagging sound, so he thought I had something caught in my throat and started the Heimlich. After the seizure was finished I didn't start breathing right away, so he kept squeezing the diaphragm (lighter this time) until I was okay on my own.

He has noticed that when he does the Heimlich during the seizure it decreases the duration of the episode drastically.

I was wondering if anyone else had been in a similar situation, or if there were any tips that could be shared. As I had mentioned, I have been lurking through here for the last couple months.. and have done a lot of reading.

Thanks for listening, I am hoping that overall this is going to make it easier to talk to my doctor about it, seeing that I've already been talking to you guys about it first

Thank you in advance for your time!
MouseyMouse

 

[Fedup]

MouseyMouse

Welcome to C.W.E. your boyfriend needs to be careful not to hurt you, it is simple to happen and you might not notice straight away. I hold my breath as well and so do a lot of others here.

 

[MouseyMouse]

I hold my breath as well and so do a lot of others here.

Thanks Fedup. I've been reading a lot about epilepsy and I guess I haven't come across the right pages about holding your breath.

My boyfriend is careful, after the first breath holding we sat and talked about it the next day and he's decided that he only intervenes if it's 60+ seconds now, because he knows I'll pull through. He starts worrying at that point of oxygen deprivation. I'm going to talk to my Dr about CPAP therapy, I'm hoping this will alleviate some of his worry.

Are there specific things I should mention to my doctor?

How mad do you think he will be that I haven't said anything to him and it's been 8 years?

 

[Fedup]

MouseyMouse

How mad will your doctor be? I would imagine a small bit but worry more about you than him. Tell him you were afraid is the first thing you do, tell him about each seizure and your boyfriend doing the Heimlich. I presume you keep a diary of the seizures and what happens if not then start one for yourself. The more you can tell your doctor the better, explain your fears about everything and get your boyfriend to write down everything that happens before and after a seizure that he sees.

 

[MouseyMouse]

Sounds great! I do have a diary. Thanks for the warm welcome

 

[valeriedl]

Your dr might say "It would have been a good idea to start seeing someone when this started happening" but they aren't going to yell at you and say "WHY DIDN'T YOU GO SEE SOMEONE!!!!!"

Since you have a seizure diary this will help you to be able to let the dr know what's been going on. This will help a lot instead of you and your dr guessing about what's been happening. The more the better.

I wonder if it's possible that you are chocking on phlegm? I don't know if I've started having seizures in my sleep or not, I've woke myself up sort of shaking is my first clue, because my husband and I sleep in separate bedrooms, he snores too bad. There have been a few times I've woke up chocking and gagging because I have phlegm in my throat. I don't know if this might be seizure related or because of the way I was laying? I've actually woke my husband up in the other room because he hears me. I have to take a drink or cough it up.

 

[MouseyMouse]

"WHY DIDN'T YOU GO SEE SOMEONE!!!!!"

Lol that made me laugh. I guess you're right.

Choking on phlegm is an interesting idea that neither my BF or myself have though about. Considering I have no recollection of my seizures with exception to pain felt the next morning, I'll have to point this out to my BF and see what his thoughts are on that one.

I do have an appointment set up for next Wednesday, but I'm scared to death about it. I find that it's so much easier to type everything out, instead of talking in person. I've contemplated emailing my doctor instead of talking to him lol, and realized that would probably be dumb...

 

[valeriedl]

I type out my seizure diary for my neuro and he likes it.

It looks like this:

The month and how many seizures I've had.
- The day I had each seizure, what it was like, how long it lasted, what I did during the seizure and if there were any after effects.

I also add anything else that I want to make sure I tell him or want to ask just to make sure I don't forget about it. I'm good at forgetting things - lol

It's easier to talk about the seizures that way instead of having to tell him all about each one. He can also see what's been going on and he's able to ask any questions about the seizures.

 

[MouseyMouse]

I am a writer, both professionally and on the side. I write copy for websites, so I have the longest diaries ever. I keep one that's personal, it lets me vent about things or talk about accomplishments. I've spent a lot of time alone, I find it really hard to go out and socialize, especially since the seizures started. I am also very long winded, so especially on here I'm actively trying to keep things short so that way I don't have to write a TLDR at the end With that being said...

April 01 - HAPPY APRIL FOOLS
Finished work and crawled into bed after having a nice hot bath. I chose a bath tonight because I had a long workout in the gym and my leg muscles were feeling fatigued. It's 11:30 - watching Jimmy Fallon. Start dozing off...
{insert boyfriends notes here} --- 12:35 I'm woken up by ***** crying and whimpering. I start gently running my hands through her hair, she's laying on her back and looks like she's having a bad dream. I'm whispering her name, talking to her very soothingly to see if I can wake her up but she doesn't. Her hands clench into a fist and her breathing becomes erratic and pained sounding. It's 12:38. I keep talking to her quietly and running my hands through her hair. She is as stiff as a board and am unable to budge her. Once she arches her back I will be able to roll her onto her side for the rest of the seizure. After 30 seconds her breathing stops, but she is still stiff and mildly convulsing. I count in my head... One Mississippi, two Mississippi, three Mississippi and so on. Once I reach 30 seconds I can't handle the sounds of gagging/choking. I wrap my arms gently around her while she's on her side, one underneath and one over and I gently start squeezing her diaphragm to see if I can't get her to start breathing again. With each squeeze I make it mildly more forceful as I start becoming more desperate to get her to breath again. Her lips and cheeks are starting to turn blue and she's still shaking. I've counted to 45 Mississippi in my head now. Come one, any time now *****! Just breath for me. All of the sudden there is a calmness. Everything relaxes and I hear the exhale. I wait. Where is the inhale? I squeeze the diaphragm again, only gently this time, and I can hear the expulsion of air and a recoil of oxygen going back into the lungs. It's not much, but it's something, so I keep squeezing, and I keep pushing. I check the pulse, and she still has one and it's strong. I push on her diaphragm once per second and the blue is starting to fade, she's starting to get color in her face again. All of the sudden she gasps, about 20 seconds after the convulsions stop she's breathing again. As she starts waking up she's complaining that her toes hurt and she needs to brush her teeth. I stroke her hair out of her face as she falls asleep. I roll her on her side and hold her close to me for the rest of the night. She is the love of my life and I will not leave her.
{I finish this off the next morning when I wake up} 7:30am I wake up and feel a horrible headache, and what feels like the pain of a toothache from my hips down to my toes. I make a coffee and pour another bath first off assuming that the pain was from the workout the day before. I get an email from my boyfriend telling me to put the above paragraph into the seizure diary. As I was reading through his email, that is why I have decided to finally talk to my doctor. I don't know if I could have handled what happened to me last night if I were on the other side of the coin.

Every post is like this. Lots of detail... I think my doctor is going to hate me. My diary is sitting on iCloud and currently is 15 pages long lots of detail... I will go and find the similarities and give him the TLDR and the full 15 pages.

 

[MouseyMouse]

Omg it feels soo good to finally say something about this to someone! It feels like a giant weight has been lifted off my shoulders!

 

[valeriedl]

Just a suggestion, it doesn't mean you have to do it, but you might not want to make it too long. You usually only have so much time with the neuro. He probably won't have an hour to be with you reading your diary then talk about anything else.

If many of your seizures are the same then you could do one in detail then if you had one like it on another date then you could just put 'Same type of seizure I had on date'.'

You could call the office and tell them that you have a very long seizure diary and see if they'd like you to email it to the neuro so he can read it ahead of time. My diary is only for 3 or 4 months, the time in between office visits. I'm sure yours is probably longer since this is the first time you are seeing a neuro.

It does feel great to talk to someone who understands what you are going through. I've learned a ton from this site and gotten a ton of help from it too!

 

[MouseyMouse]

I will do that, for sure! This is the first time I've been able to speak openly about it... I like it here


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[masterjen]

The neurologist will definitely want to know what your boyfriend observed, and make sure you both attend the appointment together even though your boyfriend wrote down what he observed. Also, there may be a lot of information discussed at your appointment, and it can be helpful to have a second pair of ears along.
As valeriedl said, most neurologist want a concise version of what happens and how you feel before and after the seizure, but at the same time try not to leave out details. Some neurologist make the first appointment a bit longer than the follow-up appointments because they realize the patient is experiencing something new and is likely frightened, etc.
Does your neurologist specialize is epilepsy (ie. is he/she and epileptologist)? Personally I had no success with treatment until I saw a seizure specialist. General neurologists typically have to have such a broad knowledge base about all aspects of neurology that they don't have the opportunity to focus their practice and continuing education on one area, whereas an epileptologist's prime focus is seizures.

 

[lindsayschu2]

I'm glad you are finally talking to a doctor about this! After 8 years, I think it is definitely time that you are seen. I hope though, that your GP will give you a referral to a neurologist or epileptologist (and believe he will). What you are experiencing definitely sounds like seizures, especially given that you have a head injury history, and should probably be treated by someone with specialization in epilepsy. 'Seizures beget seizures'--if you continue to have them, they promote more. If you go on some kind of medication you could very well have them completely stop. The majority of seizure patients do (I think it's around 75% but someone on here might have a more refined number). Following a seizure, it is not uncommon for people to have a very strange, forced kind of breathing--someone on here once posted the exact term for it but I don't recall it. You have a great attitude, and I am glad you are taking the next step to getting control of your condition!

 

[George__]

Hey fellow Canadian!

 

[masterjen]

Hi - I just realized, thanks to George_'s post, that you are also from Canada! There are a few other Canadians here as well.

 

[MouseyMouse]

Thanks for all the advice guys yes, I am Canadian! That's awesome that this is a global forum!!


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[MouseyMouse]

Does your neurologist specialize is epilepsy (ie. is he/she and epileptologist)? Personally I had no success with treatment until I saw a seizure specialist.

I have yet to even talk to my GP about this. I've been ignoring everything because it's only been happening at night. It hasn't been until the last little while that I've been concerned enough to talk about it.

This forum is the first place so far that I've spoken to anyone about it, including my doctor. I've been lurking through these forums, getting to unofficially know you guys and finally decided to register and speak out loud.

So, 8 years worth of seizures I am getting prepared to speak to my doctor about... I'm hoping that he will refer me to a neurologist, and I will make sure that he sends me to one that specializes in epilepsy.

 

[Bernard]

Hi MousyMouse, welcome to the forum. :hello:

The seizure you described in the OP sounds like a tonic clonic seizure. I would suggest you get your boyfriend to read the linked page so he is aware of the stages and can better recognize what is happening with you.

FYI, my wife always stops breathing for 10-20 seconds after convulsions stop when she has a TC.

Hope you can see a good doctor soon. It's possible that you might also be experiencing other forms of seizure activity (like simple partial seizures) without realizing it.