I cannot exercise without having seizures. Is there anyone else out there?

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jayemzs

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My life has become very restricted over the last 10 years and it has got worse and worse and worse of the years. I seriously can't exert myself (eg get out of breath for a sustained time, probably over 5 minutes) without suffering at least a complex partial seizure but a few months ago it resulted in a 20 minute generalized secondary tonic clonic seizure when I was having a light jog in the gym. I can only really say I am so relieved it didn't happen when I was out in public (eg, jogging and crossing a road for example). Basically now I have been told by the Neurologist to stop exercising and it has taken away so many of my favourite hobbies.

Everywhere I look on forums, sites etc, it says exercise is a good thing for people suffering from epilepsy. Any scans or other tests I've ever had have come back problem free.

I don't drink alcohol at all, can't drive due to the condition and even get worried about going out walking on my own.

If there's anyone else out there with this trigger of seizures, please let me know and also let me know if you have had any success in combatting it.

I'm a 28 year old male living in Glasgow, UK currently taking 2000mg of Epilim chrono split in two doses daily combined with a morning only dose of 250mg of Lamotrigine and the high dosage of these two together have many effects but that's a post for another day...

Thanks for reading and to everyone out there with any form of epilepsy, I wish you all the luck in the world in getting things under control.
 
Hi Jayemzs, welcome to CWE!

While there haven't been detailed studies, it's estimated that somewhere between 5 and 10% of people with epilepsy can have exercise-induced seizures. So you're not alone!
Have you ever had your lung and cardiac function tested? Perhaps there's something about how you are breathing, or about the structure of your veins that is limiting oxygenation if your brain, and putting you at risk when you exercise.

In the meantime, can you do light exercises that aren't particularly aerobic? Things like yoga or ping pong or free weights?

Best,
Nakamova
 
Thanks for the feedback. To be really honest, I've been trying to persuade my specialist to get things like that checked out as my Mother has an irregular heartbeat controlled by medication.

When I last suffered a proper gran mal exercise induced seizure, I was in hospital overnight and had extremely low blood pressure so much so they couldn't get blood from me without going to the main artery at the bottom of my wrist (which was rather painful).

At the time also, my blood glucose levels were over 15 which is really, really high for a young person with a perfectly healthy BMI. They sent me for a re-test 2 weeks later and I was back to 4.9 which is ideally healthy.

However, the neurologist is insistant on basically pursuing various brain scans which have always came back perfectly clear. Oh well then, add another 100 mg per week to your dose. I've had this now for 10 years and it is getting worse and worse and really shattering my morale. The only sport I can properly play risk free without exerting myself is golf and it's very difficult to get to facilities when I can't drive.

I've still never found anyone on any forums who have had these symptoms and managed to find a solution. Also, the ridiculour rise in med's over the last few years is really taking it's toll on my memory, constant sleepiness, concentration and my attitude can really let me down in work (which is an office based role).
 
i have the same problem anytime i want to workout hike play basketball etc, not a lot of people will do those things that know me b/c they know whats gonna happen i dont know if its cause the blood start pumpin im not sure still a mystery to me a lot are heat induced but even when im in the gym fell flat on my face on treadmill dont ever do it not fun.
 
Thanks so much acpollard2010. Believe it or not, it was 7 weeks ago today I was running on a treadmill in my work and about 20 minutes in, the inevitable happened and had a 20 minute really bad seizure and woke up in hospital. The only thing I was really lucky with was that there was a 6ft 5 colleague on the machine next to me who immediately saw what was happening and hit the emergency stop button and caught me as I fell. Many times in the past I have of course come out of seizures in a seriously bruised and battered state and my mouth is always bitten to pieces which is quite restricting for the next week or so as I can barely use my tongue. Of course the week long headaches are never a great after effect either.
 
I have to be aware of my exercising and racing and food intake because of my epilepsy. It can get hectic.
 
i know exactly how you feel. Ever since i was a kid gym class often sent me to the nurses office and to this day the only exercise i can do without a seizure is low impact, like yoga, walking, and hiking if i pace myself, weight lifting if i don't let my heart race too much. i also bike and swim but never alone.

I have an abnormal heart condition, a natural irregular heartbeat but that can also effect seizures if i over exert myself.

Yoga is my preferred exercise now but when i was younger i loved weight lifting machines at the gym because my muscles would atrophy and it felt really great.

i wouldn't suggest running because i have woken up around the lake before and count myself lucky it wasn't in the street and it is a little embarrassing.

I use to teach a children's yoga class and that was really great because it was low exertion (and they made me look good). They actually have yoga classes now designed for epilepsy they're pretty great if you can find one but regular yoga is just as good. although heat yoga made me pass out once but i think that can happen to anyone so drink lots of water.

hope i could help
 
Try hydration as well as keeping your head cold. A hot head could likely interfere with any given enzymatic or neurological reaction/response. If it's definitely affecting you only during exercise the exhaustion could play a part; a drummer of one of my past bands experienced the same thing if he didn't have a cooling fan and hydration around, and his condition was conferred genetically.
 
jayemzs said:
At the time also, my blood glucose levels were over 15 which is really, really high for a young person with a perfectly healthy BMI. They sent me for a re-test 2 weeks later and I was back to 4.9 which is ideally healthy.
Click to expand...

Hi Jayemzs, I am glad to meet you.

Welcome to the forum. This forum was created by Bernard out of love for his wife Stacy. That love permeates throughout the whole forum.

I have Diabetes 2, if my glucose is too high or too low I will have seizures. I always check my blood glucose before I exercise. That way I know if I have to have a snack before I exercise. Diabetes can cause seizures as well.

Have you talked to your regular doctor about your Diabetes and your low blood pressure? It sounds like something else might be going on.

Is low blood pressure one of the side effects of your medications. Your pharmacist would know? You said that you are having a lot of side effects from your medications. Talk to your neurologist about it. Maybe you should get another opinion from another doctor. :ponder:

I wish you well. Please keep us updated.
 
I just posted on my new diagnosis, and also noted that I tend to get simple partials when exercising. I'm new to all of this, and my seizures aren't bad, but I HAVE noticed that a large portion of my auras happen when I'm running, even though it seems random. When I run races, I have no issues (and that's when I'm pushing it hard), and other days I'll be out on an easy jog and have to stop and walk because I start getting an aura (though I've never had a tonic-clonic while exercising - only while sitting).

While I don't have diabetes, Type 2 runs in my family, and my blood sugar tends to fluctuate a little more than normal, so that MIGHT have something to do with it. After my first tonic-clonic, the doctors noted it was a little high (my tonic-clonics were always after lunch). You also mention low blood pressure, which is something I have dealt with, especially in the days following tonic-clonics (I've only had three, and two were in the same day, so I'm no expert on any of this, just observations). Before I ever started having seizures (at least I don't think I was having them... I could've just been not paying attention because I'd never had any physical manifestation), I would get dizzy spells after running, and I get them if I stand up too quickly sometimes.... I do wonder if blood pressure/sugar has anything to do with it.
 
I think anything that can affect the oxygenation of the brain (like low blood pressure) or the metabolic balance (like low blood sugar) can potentially be a seizure trigger. Low blood sugar is definitely one for me, although I never had any seizure symptoms from it prior to my first tonic-clonics.
 
I have Diabetes and I always test my blood glucose before I exercise. It is usually high after lunch, so that is when I exercise. Afterwards, I test my blood sugar to make sure that it did not drop to low. When it does, I have a fruit juice. Just a small amount.

I have high blood pressure and I am on medication for it. Ask your doctor what you can do to raise your blood pressure. Nowadays, there is a pill for everything.

I do not do strenous exercises. I do walking or aeorbics. Housework is also considered exercise in one of my diabetes support group.

Are you also in a Diabetes support group, as well? I know that I need both.
 
I just returned from my gym and did the treadmill and exercise machines and feel great now. However, there have been times in the past when I was out walking and I have had seizures, both CP's and TC's in public. And this was before I was diagnosed with Diabetes, Type 1, that is. Now that I have to take insulin on top of my AED's, I do need to be very careful when I exercise so that my glucose doesn't drop too quick, otherwise, I could pass out. So far, that hasn't happened. And for me, exercising helps me in lowering my insulin intake as well as blood pressure and enhances the endorphins in my brain.

Surely, jayemzs, get a 2nd opinion and get your heart checked out.
 
Before I was on Topamax, my simple partials would often start during exercise, walking, running etc.
All my heart tests were normal bar one ECG which was slightly abnormal, however, considering that all ECG's before and after that were normal, and I had loads as the hospital were determined it was a heart condition despite the normal results, that was likely due to human error.
 
David,

Get a halter-moniter test for your heart. That is accurate. See a heart specialist. I have and I have a small heart problem. I have medicine in case it turns into a major one. It can happen unexpectedly.
 
Ruth said:
David,

Get a halter-moniter test for your heart. That is accurate. See a heart specialist. I have and I have a small heart problem. I have medicine in case it turns into a major one. It can happen unexpectedly.
Click to expand...

Are they the same as a portable/ambulatory ECG (I'm in the UK)?
If they are, I had one for a few days and had a lot of the partial seizures whilst wearing it. The results of the test were normal.
 
davidmc said:
Are they the same as a portable/ambulatory ECG (I'm in the UK)?
If they are, I had one for a few days and had a lot of the partial seizures whilst wearing it. The results of the test were normal.
Click to expand...

It seems they may be the same test, just that they call them something different in the UK, usually an ambulatory ECG. Can anyone confirm this?
Nothing showed up on the test and I had it on for a few days, it was completely normal.
 
Davidmc, the halter-monitor is put on for 24 hours. It showed up some flutters in my heart. In the USA, it is extremely accurate.

I do not know if it is the same thing or not.

RunningGirl85, do you have a blood pressure cuff to test your blood pressure? Yes, Blood sugar has a lot to do with it. Have you been tested for Diabetes?

Here are some simple exercise links that you can do. They are low impact exercises:

http://www.bodiesinmotionwithgilad.com

http://www.bodiesinmotionwithgilad.com/which_dvd_to_select.htm

The one I use, when I do not feel good is the Beginners Weight Loss and Toning Program. You do not have to do all of it. I stop when I feel dizzy or light headed.
 
As I write this, I'm on the train on the way for an ambulatory EEG which is for 24 hours. I'm a bit frustrated though as last week a had countless partials of all severities and since the weekend I've been largely ok with only a few minor simples. I know this is a good thing but it would have been so much more beneficial had I had this done last week. I've had loads of tests in the past and they've all been clear.

I'll update in a day or so with how I've been. Thanks again to all who have commented.
 
Here's hoping your brain acts up just enough to get some read-outs on the EEG (but not enough to make you feel really lousy). Keep us posted.
 
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