I'm 24 & going camping this summer... recently diagnosed and have questions

Welcome to the Coping With Epilepsy Forums

Welcome to the Coping With Epilepsy forums - a peer support community for folks dealing (directly or indirectly) with seizure disorders. You can visit the forum page to see the list of forum nodes (categories/rooms) for topics.

Please have a look around and if you like what you see, please consider registering an account and joining the discussions. When you register an account and log in, you may enjoy additional benefits including no ads, access to members only (ie. private) forum nodes and more. Registering an account is free - you have nothing to lose!

C

cpuerini

New
Messages
91
Reaction score
0
Points
0
Hey all.

First have to say how helpful I've found this app, I'm nearly diagnosed (this past October) and don't know anyone else with epilepsy- so it really helps to be able to come into here.

As my topic says, I'm going camping in June. My friends and I have been going every year for the last five years, and this is my first year being diagnosed. I used to love to drink, we all do-and I know focusing on drinking isn't an option this year. But, a few questions:

Can I drink at all? My doctor wants me to wait till my seizures are more under control, I've been seizing maybe a few times a month. I have a few appointments with him before then, so I will ask and definitely take his opinion very seriously, I was just curious what other people would think. I definitely wouldn't go crazy, just a few spritzers. I was doing that in November before being told not to drink, and that never seemed to cause a seizure..

Marijuana? Opinions? I have a friend who is a radiologist, not a neurologist but still medical background. She seems to think a small amount would be alright, since it is a downer (not sure if that is the right word to use), and anything harmful would be a stimulant. She also pointed out that epilepsy is on the list of approved illnesses for medical marijuana, and that would be for a reason. I have another friend that grows medicinal marijuana, so that wouldn't be a worry either.

Swimming. I love swimming, and the idea that I have to worry about that really bothers me. So far all my seizures have been nocturnal, but mostly tonic clonics. Everyone I'm going with knows of my condition, so they know to look out for me, but I'm still curious if I should be worried to swim out too far...

I'm sure I'll be asked what medications I'm on, so:
Lamictal
Keppra
Dilantin
Vimpat
Clonazepam

I just want to have as normal as a time as possible...and have fun.. I don't want my condition to stop me from going at all, but being completely sober the entire time would be a bit if a downer, and I really want to be able to go in the water..

I hope I don't get judged for any of this, I've been really good about sticking to what my doctor wants me to do. I used to binge drink a lot, but that's completely done. Used to smoke every once and a while, nothing crazy..just would really appreciate some non-judgemental opinions, please and thank you
 
That's a tough question, especially since you're newly diagnosed and don't have a good feeling yet for what your triggers might be. As you are seeing, people with epilepsy can have very different seizure triggers or, as in my case, no particular triggers at all. The thing I would be most worried about for you is that witch's brew of meds you're taking. They all have their own unpredictable side-effects, and mixed with each other and any other type of substance such as alcohol or pot you don't know what you'll get. It may have a huge effect one way or the other on your seizures, it may have no effect. Add all THAT to an increased amount of exercise, maybe a little too much sunshine, lack of sleep from telling ghost stories around the campfire, etc. and the outcome is pretty hard to predict.

Now that I have said all of that, my gut feeling is to go ahead and have a glass or two or a toke or two, but I wouldn't go swimming if you have alcohol or pot on board. That could ruin the trip for you and your friends. Also try to get at least some fairly good sleep and not get overtired from bunches of exercise, especially if it's a lot more than you are used to.

Finally, what's going on with your doctors about getting some of those medications out of your system? I know this has been addressed before, but that is an awful lot of meds to be taking.

Onward and upward!
 
Hey,

Like arnie, my triggers are unknown, so take this as you may.

Side effects and how to deal with them will be the main focus for dealing with drinking and smoking. As for the swimming, that is up to you.

If you decide to swim, have friends VERY close to you. I'm not comfortable swimming even though I'm controlled. I'll jump in the pool or float around a lake with friends. That's about it for me ever since my last seizure.

Drinking increases the effects of my medicine. Primarily in the way of dizziness. I get very dizzy and very quick. As long as you drink responsibly and don't over-do it, you should be fine. Be sure to eat enough as well. I see that you take Vimpat and Keppra; I know from experience, the dizziness will come back to bite you in the ass if you're not careful.

I don't smoke and never have smoked anything but cigars. You know the effects, but honestly, the weed would be the least of my worries.

Have fun and be careful.
 
That is alot of meds all at once. I never responded well to mixing meds. Iv'e always have monotherapy or one med at a time. I am 27 and I feel for your anxiety. I would suggest you go and have fun. But make sure people know that you have E and are taking all those meds. Infact. You might want to write down on an index card what you are taking how much of it your taking and how often you take it and stick it in your wallet. Just for safety sake. I would be very careful with the alcohol with as many meds as you are on. The pot would be the least of your worries it'll prolly just make you pass out. I do drink in moderation usually two beers or two glasses of wine per day with a meal and I take 500mg of Keppra x2 a day and im generally ok. I would stay away from hard alcohol like vodka and the like. And I wouldn't suggest drinking on an empty stomach. Eat some bread first or something that soaks it up. Also be aware that the emotional side effects of the drugs are amplified by alcohol as well. Especially the Klonopin and Keprra. So have fun be smart and be safe.
Cheers!
 
Hey Arnie, I've been on all the meds except lamictal for a while, and like I said in November I had a few glasses of wine and I was fine. It does make me tired, but that's about it. No idea about triggers, seems like nothing. And I definitely wouldn't go swimming, or even out of sight of anyone, like if I needed to go to sleep I'd stay on the couch till my boyfriend was ready. My doctor wants to get me off the meds, but he wants to try to get the seizures more under control first.

Sperio, as I said I was on these meds and only had drinken enough to give me the giggles, and was fine. That's really all I want, definitely won't go crazy. I wouldn't go swimming alone either..

Urza, again I have no side effects other than getting tired after a long day, so I'm sure I'll be napping. And all I wanted was some spritzers, definitely won't go near hard alcohol like I used to. writing down the meds is a good idea, thanks for the tip. Everyone I'm going with are good friends, one is even almost done with school top be an EMT, so they all know I have E.

Thanks for the advice!

Sent from my SCH-I535 using Tapatalk
 
Like urza said, that is quite a bit of medication to be taking, especially since you were recently diagnosed. I've had E for over 30 years and never have taken that many meds at one time. I've taken three at a time and when I did I did not drink alcohol because of the risk of it bringing on another seizure. Also, alcohol interferes with the blood levels of the meds, risking your likelihood of having a seizure. The alcohol could cause you to go status. Do your friends know what to do if that were to happen?
http://www.epilepsy.com/epilepsy/alcohol

Drinking alcohol can possibly trigger seizures in people with epilepsy, and the amount of alcohol that triggers seizures can vary from person to person. Most people with epilepsy are told to abstain from alcohol by their physician for this reason, as well as to avoid the possibility of increased sedation from the combination of alcohol and seizure medications.

For some people, small amounts of alcohol may not cause seizures, but the risk of seizures may be much higher after consuming multiple alcoholic beverages. Seizures can also occur after heavy or prolonged drinking has stopped. These are called alcohol withdrawal seizures. Both binge drinking and alcohol withdrawal can also cause status epilepticus, a medical emergency, which is a serious and potentially fatal condition.
Click to expand...

I've gone status on several occasions and wasn't even consuming alcohol. Have fun but do so wisely and safely!
 
Cint, I actually did go into status when I was first diagnosed. And I would only want a few drinks, if I even decide to have anything at all...my friends would know what to do, but I'm not even sure if they'd be ok with me dining anything; and if not I'd respect that.

N Sperlo, thank you :) really hope I can, and it's not for a few months so I have hope things will even get better by then. I'm going to Italy next month, do I'm hoping my doctor will say a little wine with dinner is okay, and then I'd see how I'd text to that

Sent from my SCH-I535 using Tapatalk
 
I would just say too. Try to stay positive and don't focus on the possibility that you might have a seizure. I know that can be hard but when I was in Ireland I was so busy having a good time and doing school work that I never even thought about having a seizure for maybe more than a fleeting second. I think if you stay focused on the possibility something might go wrong you are creating a self fulfilling prophecy. Just try to focus on having fun and put it to the back of your mind. Damn , I wish I could follow my own advice sometimes lol.
Cheers!
 
Thanks urza :) I'll have to give the same advice to my boyfriend and friends

Sent from my SCH-I535 using Tapatalk
 
Oh my goodness!!!!!! Darling we will not judge you!!! :) The site is a place to feel free and feel relatable to others- its amazing, glad you joined! :) As for drinking... I still drink socially and it doesn't trigger any seizures. If your doctor says you should wait a while you should listen to them. Marijuana- speaking of marijuana, I have never done it before. But my friend got some recently and I think I am going to try it... I've heard a lot about medical marijuana and this week Im gnna give it a try and see what happens- my mom is even approving this! As for swimming, I personally don't like it but if your friends know whats up, then I think you'll be fine :) What I tell myself a lot is to not let epilepsy control my life. I have had epilepsy since I was 6 and now I am 20. I am still a little shy about it but I definatly don't let it control who I am and who I want to be. Go have fun and just remember, if you do have a seizure, you have great people there for you :)

Hugs,
Janellie
 
I would not do all three.

As swimming goes, I've always been very cautious in water ever since I started having seizures even when I'd been controlled for awhile, a seizure in water can be deadly. I don't usually go swimming unless there is a lifeguard on duty or someone with me who's certified to perform CPR. Since you're going camping I would figure you're not going to be near medical facilities so I would make sure to go swimming with a buddy and not while intoxicated, shortly after waking, and if you choose to smoke pot do all of your swimming first.

As far the pot goes, you just never know if it's been cut or mixed with something if what you're using is purchased illegally. That would be enough to make me want to stay away because you don't know how that'll affect your meds. The clonazepam and the pot combined together on their own would probably make you very sleepy or very paranoid. Medicinal marijuana you don't have to worry about possible tainting with other substances, but the medicinal stuff can sometimes be more potent.

There's pretty significant documentation about mixing alcohol with AEDs. With the number that you're one I'd probably only do one or two drinks and don't mix it with pot. Also, if you drink don't swim for several hours afterward to be safe.

If it were me, I'd probably go swimming and pass on the other two. I don't mind being sober while other people are drinking, but it does seem to really bother some people. Before I ever started getting migraines, when my seizures were controlled I would have one or two drinks, but with the migraines and uncontrolled seizures, more so the migraines, a drink isn't worth the risk to me.
 
Janellie, thanks for the advice :) I smoked pot for a long time before being diagnosed, it's fun but I'd recommend not smoking too much cuz it can make you paranoid. and make sure to have water and snacks close by :)

Kaelieh, I definitely wouldn't do all three at once. A friend of mine grows medicinal marijuana, and is working on an EMT degree so I'm pretty sure he'll know CPR, but I was planning on asking. With alcohol, I was planning on only one or two, if any at all. And it would be wine mixed with club soda, so very light..also the campground were going to is close to a hospital, I recommended that when we were searching for a campsite.

Sent from my SCH-I535 using Tapatalk
 
cpuerini said:
Cint, I actually did go into status when I was first diagnosed. And I would only want a few drinks, if I even decide to have anything at all...my friends would know what to do, but I'm not even sure if they'd be ok with me dining anything; and if not I'd respect that.
Click to expand...

I have had status. That is why you are on more medications. Status leads to death if the doctor does not get your medications right. I am on 5 meds for my epilepsy. I have had epilepsy for 63 years.

I am non-judgmental. It is your decision. I was able to drink a little and swim until I had status. If you go into status while swimming, you might drown. Stay close to the edge of the water. You have had a bad winter and the water might be going fast. So be careful of that.

You can do things and have fun with your friends without drinking alcohol. I am sure your friends would want you to have fun. I miss swimming but since I have had status, I cannot.

What are spritzers?:ponder:
 
Last edited:
Hey Ruth. I did go into status in the beginning, and I've had multiple seizures since but haven't gone back into status. Before I saw my podcasts neurologist I did have a few drinks, and was fine..

Sprinters are white wine mixed with club soda :) so very low in alcohol

Sent from my SCH-I535 using Tapatalk
 
Hi cpuerini,

Thank you for letting me know, I was curious.

Have you been tested for Diabetes? That turned out to be the cause of my status and multiple seizures. I have not had them since I went on a diet for Diabetes Type 2.

I, myself would not mix drinking and swimming. Go swimming without any alcohol. People have drowned going swimming after drinking. It makes the news once in a while when someone famous does it, like Natalie Wood, a famous actress a long time ago. I am 70. You can google her on the internet.

Have fun!!
 
Never been tested for diabetes as far as I know.. but I'm sure my neurologist has looked into it, he has with everything else. I'll find out. I actually just came from him, and he said I'm the type who they have no idea what caused my epilepsy, I forgot what he said that was called...

No I definitely wouldn't mix any of them. Not even sure if I'll drink or smoke at all anyway.. my neurologist mentioned I'm at the point where I should start looking into a VNS, so I don't know if it's a good idea to risk anything

Sent from my SCH-I535 using Tapatalk
 
If you do smoke: I'd advise going very very slowly. I'm in Colo. and it's legal here--I do know that a little can be calming and helpful for seizures, and a lot can provoke seizures (and it's different from person to person). You really don't know how it will affect you, so if you do, I'd suggest going super super light and seeing how that sits in a lower-risk way first. Pays to be safe.
 
Lindsay, I was planning on only taking one hit-definitely going to be safe as possible about it

Sent from my SCH-I535 using Tapatalk
 
You must log in or register to reply here.
Back
Top Bottom