Recently diagnosed with TLE.. advice please!! <3

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Hello everyone! Hope you're all well.
After years of fainting, anxiety-like symptoms and brain weirdness, one doctor finally noticed I had temporal lobe epilepsy and referred me over to a neurologist who confirmed this. Im still in the throws of the newness of it all and trying to figure it all out, but am weirdly relieved to finally have a diagnosis and be told Im not going crazy,lol.
I'm a 26 year old single mum to a gorgeous 2yr old little girl, and I think I have these simple partial seizures quite often. I definately had one last night, I felt a weird feeling rising up from my tummy, then my vision went abit weird and I felt slightly detached from reality, while at the same time being conscious. It only lasted afew minutes and I felt exhausted afterwards. I also suffer with terrible and frightening nightmares everynight that my neurologist mentioned could be part of the seizures. Im hoping they can do something to fix the nightmares as they're so real and scary that Im left with physical symptoms well into the next day.
I have two questions for everyone that I hope you dont mind answering..
1) does anyone experience chest pains / cardio symptoms with their SPS?
2) I've read alot online about how smoking cannabis can help lessen the seizures, does anyone on here have experience with that? Before I became a mum I was a big smoker of weed and wondered if thats why I didnt used to have the seizures very often but now have them frequently now I dont smoke it.

Apologies for the epic ramblings of my first post!lol. Am jus trying to make sense of it all.
Much Love to everyone xXx
 
Hi NN, welcome to CWE!

I'm sorry about your diagnosis, but also understand your relief at finally knowing what's going on!

I don't have TLE, but I know that some people do have sensations of chest pain with their simple partials. I'm sure other CWE members will chime in...

As far as marijuana goes, it helps some people and not others. As with other substances or meds that control seizures, you have to be careful about going on and off of it, as withdrawal can also cause seizures. There are discussions about marijuana in these threads from the CWE archives:
http://www.coping-with-epilepsy.com/forums/f36/medical-marijuana-9649/
http://www.coping-with-epilepsy.com/forums/f22/marijuana-722/
You might be interested in this story as well:
http://www.foxnews.com/health/2011/02/10/school-wont-allow-student-seizures-marijuana-pill/

BTW you are not rambling at all! Hope you have a chance to settle in and explore the all forums here.

Best,
Nakamova
 
Hi NeurologicalNightmare,

What an appropriate name! Yes, having TLE is a shock to one's system with all the different type of seizures and weirdness we go through. I've had SP, CP, and TC seizures, but don't recall ever having the chest pain.

IMO, marijuana would only worsen seizures, depending. Here is more info from www.epilepsy.com:
Marijuana

Studies in animals have suggested that THC, the active ingredient in marijuana, and cannabidiol, another substance in marijuana, have some antiseizure properties as well as seizure-provoking effects. Because it causes a variety of adverse effects, marijuana is not recommended for the treatment of epilepsy. Furthermore, even if marijuana or one of its components had some antiepileptic effects in humans, abrupt withdrawal of the substance after recreational use may increase the likelihood of seizures.
 
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Welcome NN

I do get partial seizures & despite not getting chest pains it is common for everyone who has them to have increased heart rate & to hyperventilate during a seizure

Regarding smoking marijuana, I can speak from experience to what Cint has posted. When I was in my teens (a long time ago) and used to smoke I never had a seizure when I was high. However I almost always had a seizure that was stronger than normal the next day or after I came down that day.

This happens because marijuana works by slowing the firing of neurons (as do anti-epileptic drugs). When coming down the neurons have to re-adjust to their normal firing speed & are more likely to misfire. This is thought to be why it can sometimes cause seizures in people that didn't have any.
 
Hello, NN,

Welcome to the forum!

I think temporal lobe epilepsy is one of they types that makes us feel the craziest. The seizure types are so odd and so varied. Even some uneducated doctors are confused by it all. It sometimes takes an epi (seizure specialist) to figure it all out.

As you read through more of the posts in here you'll get a better and better idea about what is a seizure, and what isn't. I found out I was having a lot of seizures that I simply didn't know were seizures. Like smelling weird stuff. On nightmares - a dream with a scenario might or might not be a seizure. If you simply wake up horribly terrified, no crazy beating heart or sweating, just pure terror, that can be a fear seizure. I hate those. Especially when they wake me up at night.

You asked a couple of questions:
1) does anyone experience chest pains / cardio symptoms with their simple partial seizures?
I don't, but some people in here have mentioned it. It can be a type of autonomic seizure. But it could also point to a physical ailment (cardiac) that could be causing your seizures, so a complete cardiac workup might be a good idea.

2) I've read alot online about how smoking cannabis can help lessen the seizures, does anyone on here have experience with that? Before I became a mum I was a big smoker of weed and wondered if thats why I didnt used to have the seizures very often but now have them frequently now I dont smoke it.

I'm do not partake of marijuana, but I do have a few thoughts.
Some people say it helps them, but even more say it doesn't. Those that say "yes" are a vast minority comparted to those who say "no." Marijuana is like alcohol - if it's going to cause a seizure it's often hours later, when the person who used the substance in question doesn't relate the mj to the seizure. They don't know that it is hurting them.

That said, there are more consequences than on just seizures. Pot can affect your moods, psychiatrically, etc. People with epilepsy already have a higher chance of having problems with depression and anxiety. It's a result of both the changes in the brain from the seizures and also the medications we are on. Marijuana can also cause depression and/or anxiety, making a bad situation even worse. It also muddies the waters so the doc can't tell if a side effect or reaction is your anti-seizure meds (which you need), or the pot (which you don't).

When you have a question over an alternative treatment, here's a good resource:

http://pcs.hmc.washington.edu/Epilepsy/EpiInfo/CAM.html
 
Wow Im surprised and thrilled to have so many responses so quickly! Thankyou everyone for taking the time to reply.
I dont smoke cannabis anymore (well.. I have had the odd puff from time to time but its extremely rare as I wont have any smoke in my house or around my daughter and we're very rarely apart, i love having her with me all the time as we have so much fun together) but did wonder if thats why they've only just noticed now that I have TLE. Before becoming pregnant I used to smoke all day n night long for a number of years, so chances were I was in a constant state of brain-calmness or something, making the seizures very rare.
The more I read about TLE the more I realise I've had it for many, many years. Its such a strange thing!! Im really reluctant to take any meds because - even though they do work! - I've read alot online about how they have increased peoples seizures for a while and caused some people to have grand mal seizures when they've only ever experienced simple partial ones. As a single parent who lives the other side of town from my family, it is a big risk to take that I may increase my chances of having an actual epileptic fit.
I dont often drink alcohol so think I may quit it altogether seen as though it can increase chances of seizures.
I have been thinking, and I'm really interested to hear all your thoughts on this, of not taking any meds, my argument being that I've had it this long without taking meds and have managed to lead a 'normal' life and raise a child by myself. I have suffered from bouts of depression in my teens and had anxiety for years but manage to control that with cognitive behavioural therapy. My life has always been stressful due to family problems yet I cope, very well I think under the circumstances!lol. So do you all think that it'd be wise or very dangerous to not take the meds?
Thankyou again for all your comments, its so nice to have a place to connect with others who understand! You're all very kind and Im so greatful.
 
One thing to consider is that untreated seizures can potentially escalate if the brain gets in the habit of seizing. If you decide to go unmedicated, you might want to keep a "seizure journal" so that you can get a sense if your seizures are changing in frequency, duration, or kind. If they are, that would be a reason to think about trying the meds.
 
NN,

Anti-seizure meds are also used to treat people with bi-polar disorder, so some people without seizures will be taking them, but at much lower doses than we do. Very very rarely these people will have seizures caused by the seizure meds. Like I just said - it is RARE.

Seizure meds decrease seizures in most people with epilepsy. Most people would be much worse off without meds. Some folks in here have tried stopping their meds, have been fine for a few months, and then "bam," seizures worse than they had ever had. Ask Nakamova and Epileric about this one.

I'm not one to push drugs on anybody. I'd be lying if I said these drugs are easy. They are not easy and I've toyed with going med free many times. In the end I decided seizures are much worse than the meds.

The meds do have cognitive, emotional, physical effects that range from very mild to horrible, depending on the person. If it's too bad, the doc usually just switches the med. Most of the people who have no side effects or just mild ones aren't found in this forum. They are happily skipping down the sidewalk enjoying their seizure-free life. The rest of us are in here trying to help each other get past the current med, or the seizures that aren't completely stopped by the meds, surgery, or any of the other options.

I think most people who are diagnosed with epilepsy go on meds, have side effects they can tolerate, and their seizures are under control. Then after 5 years or so seizure-free they can go completely off the meds and the seizures never come back. That's what I'm wishing for you.
 
Thanks Endless. I just dont see the seizures as too bad to warrant meds I guess. Granted they happen quite often, but as I've had them for years I jus learnt to live with them really. I always get weird vision probs, think i hear someone talking, go abit spacy / dizzy, yet just carry on as normal. Though I suppose they have increased since my daughter was born so maybe its worth trying them. I dont know, I cant decide,lol. I guess its just very early on in it all and Im still trying to get my head round it and work it all out, its weird.

I will definately start taking note of stuff too, I've been keeping track of my chest pains and nightmares too so will just add the seizures to the list (btw.. docs have ran numerous ecg's and said heart was fine, I was referred to a cardiologist for a stress test but all he did was listen to my heart through my chest and my back and said because of my age he wasnt going to run any further tests, but I've been put on propranolol to control my racing heartbeat which kicks in outta nowhere and goes crazy fast).
 
Another benefit of tracking the seizures is that you may be able to find a pattern or identify triggers to avoid. (Some sample triggers: Fatigue, low blood sugar, food sensitivities, dehydration/electrolyte imbalance, hormone fluctuations, flashing lights or patterns, changing temperature or pressure, physical or emotional stress).
 
Another benefit of tracking the seizures is that you may be able to find a pattern or identify triggers to avoid. (Some sample triggers: Fatigue, low blood sugar, food sensitivities, dehydration/electrolyte imbalance, hormone fluctuations, flashing lights or patterns, changing temperature or pressure, physical or emotional stress).

Thanks for the advice. I'd say they definately increase when Im due to come on, the 2 weeks before my period my head is all over the place, I sleep even worse and I feel like I've been hit by a truck most days, then Im fine and feel great while Im on. Jus came on today so hopefully my brain will chill for a while,lol. Flashing lights are abit of a mystery really, only ever been around a strobe light once on a school trip to france with primary school. On the last night they threw us a party and had a strobe light, I fainted, collapsed, whatever and all I remember is coming round outside with afew people around me. Since then I've stayed away from them.
 
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