how have I never heard of this site

[Nick88]

Hi everyone I'm Nick. I've had epilepsy since I was about eight (I'm now 25). Its hard to know exactly how old I was when I first started having seizures because for the first couple of years they were only at night and I didn't tell anyone about them. But I was diagnosed at nine or ten. When I was a child (and more recently as well) I've had lots of EEGs and MRIs and things and they found out that I have a benign tumor called a D-NET.

When I was 16 and it was my own decision whether to go for surgery I had a waking craniotomy to find out if they could remove the D-NET. Unfortunately they couldn't and I have never really found med that control the seizures very well.

Over time my epilepsy has been getting steadily worse and worse, but last week-end it flared up worse than ever. I spent the week-end in hospital and I barely remember any of it.

So now I come to my question, I spoke to my neuro and she was talking about sugar and caffeine having an affect on epilepsy. Has anyone else heard about this or anything like this because I was pretty out of it when I saw her.

 

[Fedup]

Nick88

You are very welcome to C.W.E. and yes I have heard that sugar and caffeine can have an effect on seizures especially the caffeine. Then again too much of anything is bad for you.

 

[Nick88]

Thanks a lot for that. One more thing, apparently my thyroid function is low or something. As far as you know could that be connected.

 

[Fedup]

Yes there is a connection between caffeine and thyroid function, the thing is caffeine is not necessarily a bad thing.

 

[Dignan]

Nick,

This may not help much, but like everything else with E, the whole issue of if caffeine is really bad for seizures depends on the individual. I've heard of caffeine being a seizure trigger, but I've also heard for some people where it actual helps them!

It's so unpredictable that the only real answer is to get to know yourself. Your doc is telling you correct, in general, but that doesn't necessarily mean its correct for you.

 

[holly]

this was interesting to me as my dr thinks i have an issue with my thyroid, possibly hyper, hopefully my bloods come back monday! i just want to know wht my next step is..... welcome to CWE nick!! keep us up to date with any devepoments.

 

[Bernard]

Hi Nick88, welcome to the forum. :hello:

Caffeine can be a seizure trigger for many people. Some people can tolerate it without any problems. My wife is very sensitive to it. If she drinks something with caffeine, she will most likely have a seizure within 24 hours.

Simple sugar(s) can also be a seizure trigger. There are several "epilepsy diets" that restrict carbohydrates and simple sugars. See the diets listed in this chart (click on them) for more info: http://www.coping-with-epilepsy.com/index.php?p=alternative-treatments

If you have trouble remembering everything your doctor is telling you (because you might be 'out of it'), you might consider having a friend or family member accompany you to help take notes. $.02

 

[Cint]

So now I come to my question, I spoke to my neuro and she was talking about sugar and caffeine having an affect on epilepsy. Has anyone else heard about this or anything like this because I was pretty out of it when I saw her.

As others have said, caffeine can effect each of us differently. I drink coffee every morning and some in the afternoon and I don't feel it effects my seizures and I've had CP's and TC's at all times of the day, even before I started drinking coffee.

And too much added sugar can have a negative effect on our brains, leading to seizures for those with E. Our brains need sugar to function and for energy. This energy is derived from glucose (blood sugar). That's the gasoline for our brains. And when there is added sugar, that is a problem that can lead to things like diabetes. As Bernard said, simple sugars and restricting carbohydrates will help with the situation. I also have Type 1 Diabetes, so I have to carefully watch my carbs.

One more thing, apparently my thyroid function is low or something. As far as you know could that be connected.

Many patients with E do have low thyroid problems, especially if they're taking either Dilantin or Tegretol. I took those meds years ago and still have hypothyroid. It also runs in my family.

 

[Nick88]

As Bernard said, simple sugars and restricting carbohydrates will help with the situation. I also have Type 1 Diabetes, so I have to carefully watch my carbs.

Many patients with E do have low thyroid problems, especially if they're taking either Dilantin or Tegratol.

Thanks for that. Only thing is I've also read online somewhere (not this site) that I SHOULD try to eat plenty of carbs. Also, Dilantin is the same thing as Phenytoin right? Because that would make sense.

I need to make another appointment with my DR to talk about all this stuff.

 

[Cint]

Thanks for that. Only thing is I've also read online somewhere (not this site) that I SHOULD try to eat plenty of carbs. Also, Dilantin is the same thing as Phenytoin right? Because that would make sense.

I need to make another appointment with my DR to talk about all this stuff.

Dilantin is Phenytoin. It is a great idea to make an appt with your Dr. and speak to him/her about these issues.

Hang in there.

 

[Dignan]

I hope that your doctor knows something about these issues including thyroid. My problem is that my neurologist doesn't know anything, or look for any problems, other than what is directly related to seizures. I've questioned him many times about thyroid and hormone disturbances from seizure meds and he grew frustrated and finally admitted that he is "a neurologist only." He said he wouldn't know what to test for, how to interpret the results, or how to treat if there was a problem. And, he said he wouldn't want to anyway since insurance might ask why is a neuro doing these things?

So, good luck with your doc. Hopefully, you can find a good one.

 

[Cint]

I hope that your doctor knows something about these issues including thyroid. My problem is that my neurologist doesn't know anything, or look for any problems, other than what is directly related to seizures. I've questioned him many times about thyroid and hormone disturbances from seizure meds and he grew frustrated and finally admitted that he is "a neurologist only." He said he wouldn't know what to test for, how to interpret the results, or how to treat if there was a problem. And, he said he wouldn't want to anyway since insurance might ask why is a neuro doing these things?

So, good luck with your doc. Hopefully, you can find a good one.

My neuro doesn't know much about hormonal issues, either. That is why I go to an endocrinologist (a dr. specializing in hormonal issues) for my thyroid and diabetes. Finding a neuroendocrinologist would be even better, but they are hard to find.

 

[Dignan]

Cint, I've been to an endo too, but often he says I should be consulting my neuro about these things since he is the "expert" on seizure drugs and their effects. I really feel caught between specialists who either don't know enough about seizure drugs effects or won't take the risk on treating outside their comfort zone.

I found a neuoendocrinologist online, but I didn't feel like I was getting his full attention via email and phone communications, so I'd like to find one but would rather be able to see him in person.

It would be nice to find a national list of true neuroendocrinologists. Often a neuro, even mine, will claim they have that expertise, but they may not as be as well versed in the endo side as you would want. (which is also demonstrated by my neuro in his absolute refusal to give any advice outside of seizures, even though he claims some knowledge about neuroendo in his training.)

 

[Cint]

Dignan,

Sorry to hear 'bout that. Are these docs at a teaching hospital?

I see my epileptologist and endocrinologist at the University Hospital, one is on the 6th floor, the other is on the 4th floor. So they are on the same online system and can see all meds and problems I'm having or have had on their computer.

 

[Dignan]

No they aren't at a teaching hospital. They are just specialists in my area. If I could find some guys that worked together that would show an understanding of all the body systems involved and/or work together that would be great. But, I'm searching in the dark, getting other opinions, hoping that another doc might be better than the one I've had for 15 years.

Unfortunately, I've not been able to find this magical understanding doc who gets it. I feel like I end up teaching them more than they help me. It really makes you want to give up on them.

 

[Nick88]

Thank God for the NHS!

 

[jenbayly17]

I am not sure if this will have anyone in your area if you are looking for another neurologist or specialist doctor but this is from epilepsytalk.com

2013 Comprehensive List of GOOD Neurologists…Epileptologists…Neurosurgeons…and Pediatric Doctors

http://epilepsytalk.com/2013/01/02/...ptologistsneurosurgeonsand-pediatric-doctors/

I know the frustration of trying to find a good neurologist you can trust. I lucked out by getting a good reference from another doctor I see for a separate issue with my ears but I hope that you can find one that will address your concerns and communicate well with you. Good luck.
:hugs:

 

[Dignan]

Yes, I've seen that site and that list before. I picked a doc off of there and tried to get an appointment, but they refused to see me unless I sent over my entire medical records first. I told them I just wanted to speak with the doc first to determine if we were a good fit and how he approached handling side effect issues, since my issues are largely about side effects and less about seizure control. I would obviously pay for his time and if things went well then I would send over records and switch.

His office still refused to see me until they had my records, so I told them to forget it. I've done that too many times before only to go through all the trouble and find out when I meet the doc that he isn't going to help me, so I refuse to do that anymore until I can speak with them first.

BTW, I'll go ahead and name the doc, Dr. Robert Leroy in Dallas, Tx. That way if anyone thinks they can get a consult with him, to check if he's a good fit for you, before going to the trouble to move your records, you can know otherwise ahead of time.

 

[valeriedl]

If I drink too much caffeine I will usually have a seizure, a little bit here and there is ok though. I love the fancy coffee drinks, the ones with espresso in them, so I always order a decaf now. If I don't get enough sleep I'll usually have a seizure and drinking caffeine doesn't help with falling asleep.

Dr's and medical records can be a real pain in the butt sometimes. I'm on Social Security and they needed the notes from the last year of visits with my neuro too keep my money coming in. When I called the neruos office I was transferred to the medical records department. They told me that it was going to cost over $60 for my records to be printed and sent to me. After arguing with them for about 2 weeks I finally got them without paying myself. I think they ended up charged the Social Security department.

Some drs that I go to want the notes from other drs that I go to for the visits with them. I always ask for the notes from each drs visit (either the neuro or any other dr) just so I have them when they are needed. Things can be so stupid to have to deal with!

 

[cadsgj]

Hmmm... I have been told about caffeine (coffee and coke for me) quite possibly being a seizure problem from the best neurologist I have been able to go to, the one who left me to move to a better state! And that was around 2005 or 2006. To date I have been not able to quit drinking coffee... addiction that keeps beating me when I try to quit. Now with my seizures back and going crazy, I find it interesting that after I drink my cup of coffee (Tim Hortons large best price cup), I feel light headed for probably half the rest of my day. But the light headedness has been there longer than a year :idea: and bad seizures only since June; regardless, I think I really should quit and understand others have similar problems. Hmmm...

Hope things get better for you Nick