Caffeine Question and Other Rants

[XxBlaqkxX]

Today hasn't been nice to my epilepsy at all still struggling with nocturnal epilepsy, I guess. I was doing fine for a little while with the higher medication dose. The past couple weeks I have had fatigue that I can't explain. I'm not exactly sick, but no matter how long I sleep, I am not rested. I know in the past I've had this issues with medications, but at least I could feel like I had energy in the morning. Earlier this week I was in bed basically all day and then my brain woke up at night...typical. Then I fell asleep for like 4-5 more hours at like 5 a.m.-ish and I felt rather rested at that point. Last night, I might've had seizures in my sleep. Sometimes whenever I am laying down trying to fall asleep, I get tremors in my arms. Today, I woke up for a moment and got a drink of water, got a lozenge to soothe pain in my throat (I have this weird pain in my voice box, but it's not like a sore throat. I think it's from inhaling air rapidly during a seizure because I did that today). I was nauseated and with the throat pain, I didn't feel well so I decided to lie back down on my side. I suddenly lost control over my arms and I felt and heard myself hitting the bed. With my eyes closed, I saw flashing lights (even though the lights in the room were off), and I heard a loud surging power type of sound...kind of like that sound that happens when the power is overloaded in a house - right before it blows. It was awful. Then, it stopped and I know I opened my eyes for a second before closing them again. I stiffened my arms and curled up my hands weird and inhaled quickly making some creepy noise you'd probably only hear in a horror movie and it HURT my throat sooooo bad. I assume this is what the pain in my throat is coming from. If I strain to lift my head as well, this pain amplifies. So, I'm thinking seizures are probably the cause. My four year old said, "Did I scare you, mama? You okay?" I woke up. Thankfully my husband is home, but he had to miss out on his activities for the day. I feel so bad about that I also have this persistent headache that feels like it's around the temporal lobe, ugh...it hurts so much. I might take some ibuprofen to see if it helps in a few.

These past couple weeks, I've also been dropping stuff a lot more...just losing my grip on things. It's frustrating...

The molar that I had that had a chunk crumble off the night before Thanksgiving hasn't been painful until now. I made an appointment, but it's not until next week. I'm afraid I must've bitten down during my seizures and broken off more of the tooth as it's hurting more. My temperature also keeps fluctuating like crazy, but that happens to me with seizures anyway. I'll be freezing cold and then burning hot....or at least I'll feel that way because my temperature drops too low sometimes with seizures. I know infection can be a trigger and the way my teeth are rotting out of my skull, I doubt this is helping me out at all. Could be making things worse, too.

Now about caffeine. It's been a love/hate relationship. I know I'm sensitive to it to a point and I try hard not to drink much. I try to keep it to iced teas at most. Although, sometimes if I'm foggy and out of it - my brain feeling like it's taking a snooze while I'm awake and I've found that a little bit of coffee helps and I'm fine. Sometimes I've speculated that it helps most when I have come across something I'm allergic to and on the verge of a seizure (because I'll get a sweetened coffee and these allergies that I have will drastically drop my blood sugar and blood pressure- it's a different reaction than what we'd consider anaphylaxis. Not sure how to explain it 100%).

Sometimes because of the lack of sleep I have had a horrible relationship with needing caffeine to even function and many times it helps, but sometimes if it's ever too much or something it can be a huge downside. It could be one of those "band aids for a gushing wound" type of deals, but I'm still trying to taper down. It's rough when I don't get any energy from sleeping. Does caffeine ever help any of you come out of a seizure or only make it worse?

 

[Porkette]

Hi XxBlaqkxX,

If you haven't had a sleep study done you should go get one because this sure sounds like me when I was having seizures
in my sleep and I woke up exhausted. My neuro did an e.e.g. and e.k.g. on me at the same time of the sleep study and found
out I was having seizures 1-2 hrs. before I would wake up in the morning and she called them myoclonic seizures. I was then
put on vimpat and since then I haven't had a single one of those seizures.

I do agree with you it could also be the infection because I know when our body chemistry is off a little it can trigger seizures
for some people. You mentioned feeling hot and then cold have you had your thyroid checked? I had the same problem I was
tired all the time and my blood pressure was low so my family Dr. checked my thyroid and I found out I have hypothyroidism.
The Dr. wanted to put me on hormone pills but I told her no way because that would trigger seizures so I take Folic Acid 1 mg.
a day along with multiple vitamins and minerals and that helps.

You may want to call your neuro or family Dr. if this continues. I wish you the best of luck and May God Bless You,

Sue

 

[Nakamova]

Some people have found that caffeine helps mitigate migraines and migraine-like seizures, and others find that it causes them. Everyone's different.

I've found that even if I’m tired, it's a good idea not to go overboard on the caffeine. A little goes a long way. You might try drinking decaf tea or coffee to see if they help you recover from the fatigue and fog. You get the benefit of the other helpful chemicals, the psychological boost, and just enough caffeine for to give a tiny physiological boost. Plus you're hydrating (dehydration can contribute to fatigue).

 

[XxBlaqkxX]

Hi XxBlaqkxX,

If you haven't had a sleep study done you should go get one because this sure sounds like me when I was having seizures
in my sleep and I woke up exhausted. My neuro did an e.e.g. and e.k.g. on me at the same time of the sleep study and found
out I was having seizures 1-2 hrs. before I would wake up in the morning and she called them myoclonic seizures. I was then
put on vimpat and since then I haven't had a single one of those seizures.

I do agree with you it could also be the infection because I know when our body chemistry is off a little it can trigger seizures
for some people. You mentioned feeling hot and then cold have you had your thyroid checked? I had the same problem I was
tired all the time and my blood pressure was low so my family Dr. checked my thyroid and I found out I have hypothyroidism.
The Dr. wanted to put me on hormone pills but I told her no way because that would trigger seizures so I take Folic Acid 1 mg.
a day along with multiple vitamins and minerals and that helps.

You may want to call your neuro or family Dr. if this continues. I wish you the best of luck and May God Bless You,

Sue

I was like in the doctor the other day...and sometimes it seems doctors are so oblivious. Sure, I might not be having some of the same problems as before, but I have others. I feel like garbage and I'm fighting to stay awake, battling constant fatigue and they smile and say, "I'm glad to see that you're so healthy!" I don't even know -_- that's not what I'd call it!

Anyway, I have not had a sleep study. I'm thinking that's going to take jumping through hoops to get. (My husband was told he needed to do a sleep study and they denied his primary doctor when they submitted the claim. He had to get the cardiologist to do it, but unfortunately he kept getting ill because of his low functioning immune system and couldn't make it and they ended up dropping him all together, but I think he needs that, too). Anyway, with our insurance they are picky because sleep studies are expensive, I suppose. They also seem so scary...and we'd have to travel to the city and my family would probably have to stay at a hotel until it was time to get me. That kind of thing is always a pain. The kids also don't handle it well if I'm not there when they fall asleep. It doesn't sound exciting.

I've been sitting here thinking if I should message my neurologist. Last time, she increased the dosage of my Levetiracetam 500mg to once daily to twice daily. Not bad, I'm used to the 1,000mg per day thing anyway. That's what it was before, but she seems to want me on the ER. I did certain manufacturers and they made me super sick. This manufacturer has to be special ordered, but it still feels less effective than immediate release that I took before for whatever reason. Doesn't seem to make sense, but it feels that way. It will only be messaging at this point and I don't want another increase in medication because it helps, but only for a time...

I had another three seizures last night and have sore muscles today...again. I feel horrible and like I haven't gotten a good night's sleep. This is becoming unbearable when it comes to functioning with kids.

My next visit is in February so it's a little bit away and I feel like I'm going to break. Getting into the neurologist earlier is going to be near impossible, I think since the wait is generally 3-6 months for one appointment.

So for now, all I can see her doing is upping the dosage unless I perhaps try to push to be on the old medication and see if that works any better because that's what was working before. I honestly hope trying a new medication does not come into question...I'm too terrified of other medications still being of child bearing age...some of those side effects are worse than Keppra.

My mom wondered for years why they never checked my thyroid. She figured that hormones were affecting my seizures, I was cold all the time, and I could keep weight on so why wouldn't they do it? We don't know. I have never had my thyroid check that I know or can remember. Now a days I'm not thin anymore, I've been putting weight on and it doesn't seem like it's stopping and that's freaking me out because I am tender where the thyroid gland would be. That change has been within the past year where I've started putting on the weight, but I was in a house with mold and when we figured that out we got out, but I am sure it left us with some damage. I am afraid I might've had thyroiditis weeks ago when I felt like someone was squeezing my throat and it was hard to breathe unless I had peppermint or something.

But that time has passed and it's not as swollen, but still a bit swollen. I don't know.

When my seizures happen, my body temperature is a raging mess. I have been known to start going into hypothermia during a seizure. I will run hot and cold like crazy later on. It could be all day after having a seizure. It messes with me.

Maybe I'll see about sending my primary doctor a message or something. It's been crazy busy and hard to fit in new things at the moment. I have to see a dentist for my rotting teeth and who knows how many visits that'll be or what we can afford. Then, I have physical therapy every week right now. It's hard to squeeze in new appointments until mid-January.

I take folate, but I definitely forget to take it. I have a B-complex that has it and also have it as a stand alone supplement in case I feel like I don't need all the B vitamins right then. It does help to a point since Keppra saps the folic acid/folate from the body.

I'm not sure if this is going to let up soon. I feel like I haven't had a good night's sleep in a couple months, but when I caught myself having that seizure and my husband said the next night I had many more it's messing with my mind. I feel like a zombie all day long. Last time I had this...I went months without feeling rested and then wound up having the worst mental breakdown of my life. I don't want that again...

 

[XxBlaqkxX]

Some people have found that caffeine helps mitigate migraines and migraine-like seizures, and others find that it causes them. Everyone's different.

I've found that even if I’m tired, it's a good idea not to go overboard on the caffeine. A little goes a long way. You might try drinking decaf tea or coffee to see if they help you recover from the fatigue and fog. You get the benefit of the other helpful chemicals, the psychological boost, and just enough caffeine for to give a tiny physiological boost. Plus you're hydrating (dehydration can contribute to fatigue).

I've never been a coffee drinker. It's hard to know what other ways can help me function since I'm so tired all the time right now. The only time I want caffeine is usually when I'm exhausted and must stay awake. It's not a daily habit and I don't like to make it one because I know it can be iffy with seizures.

 

[Porkette]

Hi XxBlaqlxX,

Your thyroid doesn't have to be large to have hypothyroidism. My best advice to you is to call your family Dr. and let them
know what's going on and tell the Dr. to call your neuro so they can get you into see him/her soon and set up a sleep study
my study was only 2 days long and they made me stay up the night before I went into the hospital as long as I could so when
they started the study they found out what was going on.
The only other thing you might want to try is cold water therapy. Put a cold washcloth on your face and neck 3 times a day at
the same time and every time you feel a seizure coming on by doing this it can stop/reduce the seizures. I was in a medical study
about this a few yrs. ago and each time before I had a seizure my temp went up a couple degrees and that in turn helped trigger
the seizures. Also if you notice you have more seizures in the fall and winter compared to spring and summer you may be having
seasonal seizures so start taking seritonin or sit around bright light and see if that helps.
I wish you the best of luck and May God Bless You,

Sue

 

[XxBlaqkxX]

Hi XxBlaqlxX,

Your thyroid doesn't have to be large to have hypothyroidism. My best advice to you is to call your family Dr. and let them
know what's going on and tell the Dr. to call your neuro so they can get you into see him/her soon and set up a sleep study
my study was only 2 days long and they made me stay up the night before I went into the hospital as long as I could so when
they started the study they found out what was going on.
The only other thing you might want to try is cold water therapy. Put a cold washcloth on your face and neck 3 times a day at
the same time and every time you feel a seizure coming on by doing this it can stop/reduce the seizures. I was in a medical study
about this a few yrs. ago and each time before I had a seizure my temp went up a couple degrees and that in turn helped trigger
the seizures. Also if you notice you have more seizures in the fall and winter compared to spring and summer you may be having
seasonal seizures so start taking seritonin or sit around bright light and see if that helps.
I wish you the best of luck and May God Bless You,

Sue

I keep forgetting to mention the thyroid thing because I've been so tired and some days I feel better than others so I don't always remember my swollen thyroid...I'll have to see if I can get in another appointment. It seems all that much harder to get in around the holidays.

I'm okay with my doctor and neuro not talking...I don't know if I fully like my new primary doctor yet >_< kinda on the fence about her right now.

A sleep study is nothing that's been proposed by any neurologist or doctor I've seen, even when I've had nocturnal epilepsy problems well over 10 years ago so I don't think a sleep study is going to be their "go to" thing...it never has been so I'm not sure they're about to start recommending it now.

I'll have to see about calling the primary tomorrow and sending my neurologist a message if I remember.

I'm not sure if I've heard of the cold washcloth thing. If I remember, I'll give it a try.

Living where I'm at I'm afraid increases my seizures as it is. I'm at an elevation of 4,000+ feet. This is the town I first started having seizures in and I notice in this area that when I start feeling like I'm about to have a seizure that there are other people in our town that are having seizures around the same time? It scares me to death. When I was super off this past weekend, just on Friday one of my child's classmates had a seizure at school with no previous history. Another time before then, I felt off and then one of my friends that has had seizures becoming a bit more frequent had a bad one and was hospitalized. When I was younger and felt off, a teenager walked down our street and had a seizure and died on the sidewalk. I didn't want to go outside for weeks...

Over the weekend a storm rolled in, which also probably didn't help. We've had a lot of fog (we like never get fog).

Sometimes here I feel like bothers peoples seizures badly. When I've visited other places that are at or super close to sea level, I didn't feel this brain fog when I was there. I forgot to take my medication multiple times on these visits and never realized it until I looked at the pill pack because my body didn't feel weird like, "Oh! You haven't taken your medicine!"

My husband and I are contemplating moving to somewhere sea level, near the ocean for this reason. We feel it might be helpful for both of us.

My seizures are pretty consistent around menstrual cycles throughout the year. I do feel better when I get outside as far as mentally. Sometimes clearer, but I'm also vitamin D deficient most of the time. I don't always "feel right" if I don't get outside in the sunlight. We don't have many cloudy days, but cloudy days hate me...I feel super sluggish and tired, but cloudy days aren't often (except for the record early monsoon that lasted a long time this summer - months longer than usual).

It's night again and I'm starting to feel that shakiness in my muscles....I am so frustrated. I don't know why this keeps happening to me

 

[Nakamova]

Altitude can definitely be a seizure trigger, especially if you already have a lowered seizure threshold. I think it has to do with oxygen and the breathing. When you start feeling off, does it help if you do some belly-breathing (slow deep breaths from the diaphragm with longer exhales than inhales)?

 

[XxBlaqkxX]

Altitude can definitely be a seizure trigger, especially if you already have a lowered seizure threshold. I think it has to do with oxygen and the breathing. When you start feeling off, does it help if you do some belly-breathing (slow deep breaths from the diaphragm with longer exhales than inhales)?

I haven't thought to do much deep breaths or belly breathing while I'm feeling that way. It's not usually something that crosses my mind, but I do notice that sometimes it's harder to catch a breath or that I'll have minor heart palpitations.

I will keep that in mind.

I am having suspicions that a tea that I've been having from a gas station (out of their fountain) that they said before, "Only had cane sugar for the sweet," is using artificial sweetener. I'll put like 1/4 sweet and the rest unsweet and I can still taste the sweet so heavily that it's gotta be an artificial sweetener. Today I got some tea, had some, and then I started feeling odd and so did my husband who has other health problems that are bothered by artificial sweetener so we tossed them and we won't be going back to get that again. I had something sweet after that and some water and now I feel fine.

 

[valeriedl]

My seizures are pretty consistent around menstrual cycles throughout the year

This can be very normal.

I try to stay away from caffeine as much as I can because it can cause me to have seizures. Pretty much the only time I drink coffee is at home and I make it decaf. Every once in a while I will get a fancy coffee, depending where I get it I am abele to get it decaf. I make them at home too with coffee syrup.

Sometimes when I go out for a dinner I will get a soda or iced tea, these do have caffeine in them too.