Apparently The Seizures Have No Relation To My Heart Rate...

[trappedat20]

So, during the past week or two I've noticed that I've felt that not enough oxygen feeling and feeling sick without my heart rate increasing. It made me wonder if it was a coincidence that my heart rate was extremely high when I had the seizures/felt sick usually or if maybe my oxygen being so low was causing my heart to speed up. This was confirmed last night.

I was lying in bed with my husband not doing anything physical at all (not even rolling over) and all of a sudden I felt like I didn't have enough oxygen for no reason. I was physically breathing fine but it was like there was no oxygen there and I felt extremely sick. Not even a minute later I had 2 seizures. After the seizures I still felt extremely sick and felt that normal lack of oxygen feeling I get and my husband felt my heart rate and if anything it was low. He said it felt like it was 60.

My neurologist said my seizures were caused by my heart inappropriately beating extremely fast for no reason and my body not getting enough oxygen because of it. Last night showed that that's obviously not the case though. Every seizure I've had before my heart was beating extremely fast but it was obviously coincidental. Either way we knew the seizures were caused by a lack of oxygen. The difference is the seizures aren't necessarily caused by my heart being crazy, and more from my body. This makes me lean towards mitochondrial disease even more. Like I said my breathing is fine but it's like my body doesn't know how to use the oxygen.

I have no idea how to even try to prevent them now if I can get them while lying down doing nothing. This is my first seizure in about 2 to 2.5 weeks and I've gotten in close situations where I'd normally have a seizure but I didn't so the creatine is obviously helping considering I was having seizures 3-4 times a week. My neurologist is probably going to try to push me off on a pulmonary doctor when I tell him this, because he was trying to push me off on a cardiologist before. I'm soooo tired of all of my doctors looking at all of the pieces individually instead of looking at the big picture. Come May 2nd for my appointment I'm sticking up for myself and saying I'm done with the bs tests and testing me for things I don't have, look further into the cause of the dysautonomia and you'll find why I'm sick. If not then I'll find someone else. This is obviously getting more serious and my doctors are wasting time checking me for things I don't have because they are looking at my symptoms individually. It's like they are trying to force me to be a medical horse when I'm obviously a medical zebra and they have no idea how to handle that. Def. need to get testing for mitochondrial disease as it's starting to look more and more like the root cause.

[Freaked]

I'm so sorry you're going through all this, MakeMeErised. Have they ruled out reflex anoxic syncope yet? Or monitored your oxygen during an episode? Has a holter monitor caught one? It just seems to me that they're guessing where they should be investigating.

I agree about the horse/zebra thing. My condition can be kind of erratic, and I'm just hoping it won't get worse, cos I know if it does I'll still find it hard to get help.

[trappedat20]

The holter monitor did not catch a seizure. I only had it for 24 hours and of course my body decided to behave on that day because it doesn't like to get caught in the act. I did get a little sick one time wearing it, but no seizure. That's what I think they are. Ikr. They need to be looking into this further but instead they are trying to pull apart the symptoms and figure them out individually. If they find out the cause of the dysautonomia, they will find out what's causing everything else but they aren't even looking into the dysautonomia. Seems like everyone knows I have it but nobody is doing anything about it. instead they want to do liver tests, and heart tests (lots of heart tests) and blood tests for common things. I want to scream at them that my heart is fine and I'd appreciate if they checked something else already. My husband and I have discussed getting an 02 meter and are thinking of getting one today, but I'm worried if it's mitochondrial disease and my body has the oxygen but it's not using it efficienctly then there will be nothing I can do.

[IceLizard]

Hi MakeMeErised,

I'm sorry, this must be very frustrating and scary. I know what your doctor says about the high heart rate causing your seizures. That is what usually happens with me. I can also be triggered by being startled, though. I do not have issues with turning blue or a severe feeling like I can't get enough oxygen if my heart rate is normal, though sometimes it feels like my breathing is being suppressed and I have to make myself breathe.

I use this pulse oximeter, which is working well and much less expensive than one I would have gotten locally ($25 vs $65): http://www.amazon.com/ChoiceMed-Fingertip-Oximeter-Lanyard-Protective/dp/B009EDQ3GE/ref=sr_1_3?s=hpc&ie=UTF8&qid=1398156386&sr=1-3&keywords=pulse+oximeter

I agree with Freaked about where the investigations should be going. I hope you can find some answers soon.

[masumeh]

I haven't been to the forum in, umm, probably years, but this is first time I've seen someone else with seizures like mine. I have had POTS and seizures for 12 years, been through the doctor mill over and over. They just last summer confirmed that I had seizures as well as the fainting and other POTS symptoms. My POTS doc is a cardiologist, and he recommended going to Hopkins hospital's epilepsy center to investigate the seizures; however, I am not able to do that logistically at this time. He saw no specific connection btw my POTS and my seizures, but I noticed they seem to play off each other.

I too have episodes while laying down, as well as episodes that follow fainting due to shifting positions (seizures triggered by POTS fainting and associated HR fluctuation). I even have seizures in my sleep, wake up with after-effects (post ictal state). Mine are partial complex. What type are yours? How long have u had it? Do u have seizure disorders in ur family? My theory for my case is that a familial predisposition to seizures produced this secondary to my POTS (I got POTS from a viral infection/EBV in 2002).

I also get thrown into short commas by low HR, (like into 30's), but I pull out without medical intervention, usually 3-5 hours after onset.

The best thing I've found is to research and seek treatment for both POTS and seizure disorder. Like, my house is seizure proof/ faint proof; my neighbors know I cannot answer the door quickly; I try to avoid sugars, late nights, and other well-known seizure triggers.

About the oxygen thing, are u sure it's not actually Just your pre-ictal symptoms? Many ppl get shortness of breath or a constricted feeling in chest b4 a seizure hits. This is one of my signs of an oncoming seizure...along with numbness in hands, blurred vision, sometimes sudden nausea, and an all around icky feeling like my blood has turned to sludge in my veins.

Seizure are so disorienting, it's hard to determine what exactly is happening. It really helps if the person with u is observant and can later relate fully what they observed.

Hope u get some relief and answers soon

[looneymom]

Does it help if you are in a reclining position? Or use a wedge pillow at night? Sorry you are having the brain oxygen problem. This sounds like a terrifying ordeal.

Have you tried any supplements for the mitro. problem yet? I know there is a cocktail mixture that many doctors put patients on and it has been in past post. On page 160, last paragraph, Dr. Amy mention's it in her book. However, I also understand that you may not want to add anything for fear of messing up any upcoming test. The book that Chaos posted, Dr. Myhill, also mentions several things to help in this area.

Take care of yourself and be sure to post about your appointment in May. It will be here before you know it.

[trappedat20]

@IceLizard Ik the heart rate use to be super high when I would have trouble breathing and have the seizure. Seems like now my heart rate can be fine though and I'll still have trouble breathing and have a seizure. We actually just ordered one last night finally lol. It should be here Thursday. I can't wait to use it so that I know more about what's going on with my body during those times where I get sick. Yeah, they definitely need to be investigating.

@masumeh I don't have seizures run in my family. They already confirmed mine weren't epilepsy and were due to lack of oxygen and likely related to the dysautonomia. I had 2 seizures between January 2013 and May 2013 when I first started getting sick but before I was full blown sick. Then starting the beginning of March 2014 I started getting 3-4 a week, every week. Then I started taking creatine and noticed that my seizures have decreased a lot and this was my first seizure in 2 to 2.5 weeks. I've actually been worried about going into a coma. With all of my problem with oxygen I've been hoping it doesn't progress to that. That's crazy that you can go into short coma's like that. I'm going to look more into that because I didn't know that could happen. Ugh I know that feeling before a seizure. It's awful! It's probably worse than the actual seizure because at least I don't remember the seizure. The after effects of the seizures are horrible too because you don't feel right for several hours afterwards. I've had a lot of problems with oxygen lately and normally the reason I get them is because something causes me to have problems getting enough oxygen and if it gets too bad I will have a seizure from it. I normally turn blue before my seizures. I hope things work out for you too. I don't have to proof my house because when I get that feeling I quickly lie down and I don't jerk too much so I don't injure myself. I stop breathing during my seizures so my main concern is that it will progress enough so that I don't start breathing again on my own. Good luck with your seizures. Hope you get the answers you are looking for.

@looneymom It seems like nothing helps anymore. Before it use to help to go carefully up/down the stairs and take 4 breaks but now i'm having so much problems with oxygen outside of things that increase my heart rate too that even at rest I'm at risk of a seizure. I'm only on creatine atm because I don't want to screw up any tests that I might have done for mito. I don't want a muscle biopsy as I know between the anasthesia and the pain I will be soooo sick and so I'm hoping to be tested for it without having to do that. I will tell them I'm on creatine so not to pay too much attention to my creatine levels but if I'm taking a whole bunch of stuff then it might really mess with the tests. I don't know how far I'm willing to go to get tested though. If all they are going to do is tell me to take OTC supplements and to have a slow paced life then I don't want to travel the country and pay lots of money and have lots of tests done for that. So, I'm not sure how far I'm willing to go yet. I'm hoping they can pick something up with simple blood tests so I don't have to go way out of my way for testing. Thanks, I just hope that they actually do something when my appointment comes up. I'm gonna start taking control and tell them that I think I have mito and depending on what my 02 meter says possibly ask aboutsupplemental oxygen. I don't want to just continue to run tests on me that I know will come back negative though. They are wasting time and I'm getting worse.