A little reassurance please!

[LJ-Bain]

Hi there!
Just for those who don't know me, I have had multiple daily seizures since September 2011 and was put on Keppra in Feb 2012.
I have a variety pack of simple and complex seizures but mainly simple.
I have an autonomic component for sure with a racing heart and increased blood pressure to go along with the mainly atonic nature of my seizures although they can be twitchy afterwards and other fun features that I won't bore you with!
My epileptologist suspects that my seizures begin from deep within my brain but I am still awaiting my EEG results from almost 6 weeks ago and my Keppra dose is to remain the same until I can get in to see him on his cancellation list.

What I'm worried about is my heart. The past few times that I have been in the ER they place me in the cardiac unit until they finally get my medical history.
Hospitals have their hands tied until I see my epileptologist.
In October and November I found that I could run and was stronger but now I find that I'm weaker.
Does any else worry about their ticker? I'm almost 37.
I'm emotionally handling things pretty well now though which is good.
I'm sure others have been in my shoes though, right? And your hearts have continued on ticking....
My body is just getting a little worn out I think. Hopefully I'm hearty! (ha ha)
THanks for reading!

 

[PFunk]

Hi LJ!! I'm sorry to hear you're not doing well.



Have you had a chance to talk to your doc about your heart/blood pressure? I'm guessing not considering you can't meet with them!! What a pain. When you're there, you should ask if it is worth you wearing a cardiac monitor. They're pretty small, and after a few days they should be able to establish the extent the seizures are having on your heart. I don't know if you exercise, I imagine time is short with littles around, but you could strength your heart through aerobic workouts. It will be all the more prepared in the future.

It may be the ER's policy to place anyone with high blood pressure in the cardiac unit until they can confirm their medical history. I have had high blood pressure since my early 20's despite being skinny and having low cholesterol. Its hereditary, my moms side of the family is a bunch of high anxiety stress balls. I have made it through a few TC's and been unscathed in the pulmonary department. I'm sure my experiences are different, but maybe it will give you some hope.

If not then try this story. My uncle had 4 heart attacks, multiple surgeries, the last being a triple bypass in his early 40's (his father died at 42 of a heart attack). The doctors told him his heart is weak and it could go at anytime. They said not to do anything physical because it couldn't handle the strain. Well he is stubborn and ignored them. He started running and working out. Now he is in his mid 60's and every time he goes to the doctors they say "I don't know what your doing, but keep doing it". I know your situation is different but when all odds were stacked against my uncle he was able to come out on top.

Also I'm surprised the epileptologist hasn't increased your medication if you're still having that many seizures a day, regardless of seeing you!



Hang in there. You're still young and have a lot of years left in you. Your family isn't going to let you go anywhere! They love you and that makes you one of the luckiest people in the world!! So try not to worry and instead enjoy their company.

 

[LJ-Bain]

Thanks P-Funk!
I had a one of those cardiac stress tests, angiograms including the ultrafun table tilt, and ultrasound of my neck arteries. For awhile they thought I had a left to right heart shunt but then they changed their minds.
But I guess that is already a while back. When I had my 3 day ambulatory EEG in December they would have had one of the monitors connected to my heart rate but I know those ambulatories can be a little iffy.
I will bring it up. Especially because I shallowly breathe only in little gasps during my seizures and cough up a storm upon recovery.
I don't exercise much besides walking. Guilty of that. Although since September I have lost 25lbs! Yippee! I'm skinnier than when I got married!
That sucks about your family history....but it really does sound like you uncle is a miracle story! Wow.
My epileptologist increased my dose over the phone 3 times since Feb. so I can understand why they are hesitant to increase further. They may need to talk to me before going another route which I can understand. Keppra has helped but maybe not enough to warrant sticking with it further. Who knows!
Meh. I just have to be patient I guess. Rest when I can and maybe take my awesome dog for more walks with his leash tied around my waist if things go south!
My family is stupendous. My husband is a living saint.
I've been trying to be nicer to my family when I have energy. I've been learning Hannah Montana songs to sing as lullabies to my one daughter and picking forget-me-nots for their bedrooms to bless their little dreams.

 

[Nakamova]

It's not unusual to have the heart race, and to breathe in unusual ways during a seizure. But if you suspect that you may also have cardiovascular issues, ask about doing another stress test. Is your recent loss from dieting? Sometimes that can leave you breathless or more tired depending on how you go about it.

 

[LJ-Bain]

Thanks Nakamova.
My recent loss was just from not wanting to eat as much with Keppra and I also tried a vegan diet for a bit of sorts. It was an "anti-inflammatory" diet from my naturopath but it wasn't gear towards vegetarians so I only did it for 3 months but I haven't gained it back with my inappetite. I lost the weight in Jan or Feb ish.
I will talk to my epileptologist or maybe my GP if things continue and the cancellation list stays the way it is.
I just don't know when to become worried that's all. I just have to be patient. Hopefully I don't have to wait until August when the original appt was booked.