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Medical Forum / Diseases and Disorders / Epilepsy / May 2007Bedtime Has Almost Become An Ordeal Lately
Hi everyone: As per my partially quoted blog post from http://www.careplace.com/blog?id=6757&pid=1627 (Or http://www.careplace.com/blog/6757 if the other one doesn't work for you), a simple thing such as bedtime for me has become (At the very least) a hassle. Here's why... The greatest chance for me to have a seizure. Not sure why this is but the last SIX seizures have all occured at 9:00 PM or after. The last I had a seizure in the middle of the day was over TWENTY YEARS ago when the last semi-regular pattern of seizures stopped. In fact, I had TWO of 'em on the same night WITHIN HOURS of each other (this has happened TWICE within this same cycle). The first time was while I was in the ER after being taken in for the first seizure and the second time, I wasn't even home from the local Level One Trauma Center an hour before I had another one. Now before you say "Okay", but don't exactly look very surprised, lemme share this little piece of info.. For one thing, I'm 40 years old. I'm Diabetic and overweight (I'm about 300 lbs. and currently on the waiting list of a local Bariatric Surgeon as I type this). As such, my body is changing (It has been since I was hospitalized back in '05) and my Epilepsy is having trouble adapting to the changes as they are pretty much occuring faster than my Epilepsy can keep up with the changes. As a result, if I don't have the correct balance of stuff I need (ala Potassium, Vitamins, etc.) and/or I contract other factors (Such as sun/heat stroke), I can have a seizure anytime - DAY OR NIGHT. And then there's the WEATHER factor. Our weather here in Denver, Colorado has been something of a roller-coaster lately, though we seem to be on the down side (Or upswing as it were) of that as Spring turns into Summer, so temperatures should either stablize or rise as time goes on, thus (Hopefully) reducing my chances of having a seizure. This was the case during the Winter, only difference is the temperatures were all cold instead of warm or hot. But still, this is the first Summer I will go through experiencing this feeling. Hopefully things will go smoothly and it will be my last as I should be approaching the end of the Bariatric Surgery pre-screening process by then (Hopefully *fingers crossed*) :) Like I said, you can read the full blog entry @ http://www.careplace.com/blogid=6757&pid=1627 (Or http://www.careplace.com/blog/6757 if the other one doesn't work for you) and comment here or there (Or both if you'd like). If there's anything I could perhaps try to make going to bed less dreadful for me, I'd surely appreciate knowing about it,. :D Cheers :D Pat Cook Denver, Colorado Hi. I'll insert comments at **s below, as there were several items I saw that might help. About 3-4 weeks ago I also posted a set of websites I had found useful over last few years-> Subject is something like 'Websites I found useful' should get it if it's not still up on your posts under this group. I can Repost it if you don't see it in the history folder over last ~3 months. Any questions about below you can post on this thread and I'll see them later or others will answer. (Post volume has been *low since November, when a 'kid' disrupted the group-- he should be offline now.) G./ > Hi everyone: > [quoted text clipped - 6 lines] > seizure in the middle of the day was over TWENTY YEARS ago when the last > semi-regular pattern of seizures stopped. **** Our guards tend to be lower during sleep so if there's a chance of a 'breakthrough seizure' it will tend to happen during the night or when we're over-tired. / > Now before you say "Okay", but don't exactly look very surprised, lemme > share this little piece of info.. [quoted text clipped - 5 lines] > changes as they are pretty much occuring faster than my Epilepsy can keep up > with the changes. **** I don't know how any pills you might use for diabetes interact with anti ep drugs (AEDs) but there were also 1-2 people around who were being treated for diabetes too, hopefully they'll comment./ > As a result, if I don't have the correct balance of stuff I need (ala > Potassium, Vitamins, etc.) and/or I contract other factors (Such as sun/heat > stroke), I can have a seizure anytime - DAY OR NIGHT. **** Tegretol and some of the other AEDs seem to not work as well if we're exposed to longer periods of sun./heat without cooler periods. Don't know if same applies to what you use. Any of above vitamins etc. should* be ok, but I show any cold stuff etc. to the pharmacist who fills my AED prescriptions to make sure there are no conflicts, (e.g. Grapefruit juice will compromise Tegretol-- not something I expected at the time, but it turned up here after I had a few 'unexplained' seizures and didn't related them to which juice I used with the morning Tegretol. ) / > And then there's the WEATHER factor. Our weather here in Denver, Colorado > has been something of a roller-coaster lately, though we seem to be on the [quoted text clipped - 3 lines] > during the Winter, only difference is the temperatures were all cold instead > of warm or hot. **** Mile High City -- I found early on I could predict a Thunderstorm 3 hours before it arrived. Drop in air pressure ahead of a Rain or Snow storm I could feel inside my head that far ahead. Thankfully (for me) I got to a pill dosage that those symptoms have gone. I still feel a mild discomfort (like today) that shows it will rain or be cooler this afternoon, so saves me having to turn on the TV or Radio to tell if I need an umbrella if I go out. :-< Possibly the 5000 foot altitude where you are might produce *more low air pressure zones? than other places, or it might be just related to weather fronts approaching over the mountains to the west of you. / > But still, this is the first Summer I will go through experiencing this > feeling. Hopefully things will go smoothly and it will be my last as I [quoted text clipped - 9 lines] > Pat Cook > Denver, Colorado *If you have a hockey or rugby supply store nearby, some will sell a plastic Mouthguard used by players or goalies. This type covers both the Top and Bottom teeth. My dentist said to cut it in Half (horizontally) since you only need cover the Top teeth to prevent tooth grinding or biting tongue during the night if you're having a restless night. (That way you now have 2 guards for about $12-20.) Wrt the Dental Version (I have a Dental Plan that pays part, since I live in Canada)-- the Dental Version is called an Occlusal Splint. Your Dentist can tell you what it would cost where you are. The Impressions and first Splint cost about $120. Canadian about 2001.. I originally needed a replacement splint each 6-10 months in 1993-5 ($30. once the impressions were done), then each 2 years. The splint I still use was made about 2001 or so-- so *either the splint is warding off nocturnal szrs./grinding *or (more likely) the pill balance I got to in 1997 is still working. If you list any Anti Ep. meds you might be using, that might bring some answers from others who have similar szr. types, or are using similar pills. Sometimes if you're waking up before morning it could mean either the pills are wearing off during the night or other things they might have a reply to. (Mine are all time released pills, and I haven't had any changes to doses or nocturnal szrs. in a long time.) G. P.S. This is an International Group. When it's active we have had people post from 6 timezones in North America, about 6 in Europe, and Austalia and New Zealand, so you could have replies over next ~3 days as others who might still read the group look for any posts. SInce it's been quiet for a while they might not check here every day. *I usually do since it was a Powerful Social Group where we could share our feelings, fears, successes and just general experiences of what worked or didn't work for us. By the way, we have a Doctor from time to time who looked in too, though his posts were intended as *general *but extremely useful comments on a seizure /pill type, side effect that some posters hadn't thought of. Dr. Bob lives in California (I think), and is our one Real Doctor, so you can take any of his comments as based on real experiences with people like us. // Hi everyone: > Hi. I'll insert comments at **s below, as there were several items I > saw that might help. About 3-4 weeks ago I also posted a set of > websites I had found useful over last few years-> Subject is something > like 'Websites I found useful' should get it if it's not still up on > your posts under this group. I can Repost it if you don't see it in > the history folder over last ~3 months. Okay, can we get to the point here? You come across like you're trying to spam us with YOUR OWN website but without mentioning the URL > Any questions about below you can post on this thread and I'll see > them later or others will answer. Don't worry, they'll be there. Read below. > (Post volume has been *low since > November, when a 'kid' disrupted the group-- he should be offline > now.) G./ G., you're coming across to me as though the "kid" you're referring to is YOU. Not to hurl flames BUT..... Anyhow..... >> Hi everyone: >> [quoted text clipped - 14 lines] > of a 'breakthrough seizure' it will tend to happen during the night or > when we're over-tired. / Okay (I think) >> Now before you say "Okay", but don't exactly look very surprised, lemme >> share this little piece of info.. Okay.... *Still looking for the point of G.'s post* >> For one thing, I'm 40 years old. I'm Diabetic and overweight (I'm about >> 300 [quoted text clipped - 9 lines] > with anti ep drugs (AEDs) but there were also 1-2 people around who > were being treated for diabetes too, hopefully they'll comment./ If you read my blog, I list the number of meds I take and their names in medical terminology. >> As a result, if I don't have the correct balance of stuff I need (ala >> Potassium, Vitamins, etc.) and/or I contract other factors (Such as [quoted text clipped - 5 lines] > > Don't know if same applies to what you use. It doesn't as I don't even take Tegretol. I'm on Depakote. Did you even read the blog post that lists all the meds I take or should I post the URL to that as well? > Any of above vitamins etc. > should* be ok, but I show any cold stuff etc. to the pharmacist who [quoted text clipped - 3 lines] > seizures and didn't related them to which juice I used with the > morning Tegretol. ) / Again, I don't take Tegretol, so this isn't very useful. >> And then there's the WEATHER factor. Our weather here in Denver, Colorado >> has been something of a roller-coaster lately, though we seem to be on [quoted text clipped - 16 lines] > zones? than other places, or it might be just related to weather > fronts approaching over the mountains to the west of you. / It might. >> If there's anything I could perhaps try to make going to bed less >> dreadful [quoted text clipped - 6 lines] > tooth grinding or biting tongue during the night if you're having a > restless night. (That way you now have 2 guards for about $12-20.) Why cut it in half? Doesn't seem to make sense to me. *shrug* > If you list any Anti Ep. meds you might be using, that might > bring some answers from others who have similar szr. types, or are > using similar pills. Okay. I'll do that later today in a follow up post in this thread. > Sometimes if you're waking up before morning it > could mean either the pills are wearing off during the night or other > things they might have a reply to. (Mine are all time released > pills, and I haven't had any changes to doses or nocturnal szrs. in a > long time.) Yeah, but I generally don't have seizures right off the bat. If my Depakote is wearing off or has worn off, I generally get a tingling feeling (Usually in my left arm) that indicates a seizure is pending if I don't act quickly by taking another dose of Depakote. In order for me to have a seizure right off the bat, there would have to be other mitigating circumstances and/or factors (Such as sun/heat stroke or a DIABETIC seizure). > P.S. This is an International Group. I know that... > When it's active we have had people post from 6 >timezones in North > America, about 6 in Europe, and > Austalia and New Zealand, so you could have replies over next ~3 days I've already figured as much. I look forward to reading each & every one of those posts too. :) > as others who might still read the group look for any >posts. SInce it's > been quiet for a while they might not check here every day. Okay genius (That's what that "G" in your name should stand for). > By the way, we have a Doctor from time to time who looked in too, > though his posts were intended as *general *but extremely useful > comments on a seizure /pill type, side effect that some posters hadn't > thought of. Dr. Bob lives in California (I think), and is our one > Real Doctor, so you can take any of his comments as based on real > experiences with people like us. // Cool. If he has any comments, I look forward to reading them. :) Cheers :) Pat Cook Denver, Colorado > Hi everyone: > <snip> > > Not to hurl flames BUT.....<snip snip> Shame on you! Now let's hear your apologies to G. who is one of the most helpful and valuable contributors to this news group. I assume that you're having a bad day. Hi everyone: >> Hi everyone: >> <snip> [quoted text clipped - 3 lines] > Shame on you! Now let's hear your apologies to G. who is one of the most > helpful and valuable contributors to this news group. Sorry G. For the sake of the group, I apologize. That said, half of your first post *was* diatribous about something I know little of nor care about though. THAT is why I said what I said earlier. > I assume that you're having a bad day. No, it's not that. I just didn't know. And G.'s reference to a post about websites he/she found useful didn't help either as I don't have that post in my history folder (I suppose I could retrieve it off of Google though). But posting the URLs would help :) Cheers :D Pat Cook Denver, Colorado > But posting the URLs would help :) Part of the problem is that nobody has taken it upon themselves (volunteer?) to maintain such a list, so we find it posted mainly piecemeal like I'm going to do now. This is a sample courtesy of G. > A new site (to me) someone suggested is at http://www.epilepsy.com/ > he main Idaho Epilepsy News site is at http://www.epilepsyidaho.org . > (Julie Walton posts here regularly and maintains the Idaho Website for > people there and us too. ) > These are my favorites -- also from Epilepsy Idaho. One is > http://www.epilepsyidaho.org/seizure2.htm and that links to > http://www.epilepsyidaho.org/seizure.htm . One of those is easier to > print, although both display well for information or reference. > Howdy Dave has a site he put together ~10? years ago and he regularly > updates. He was also one of the oldest :-< members of this group and > someone told me he was one of the Founders too. Most people don't know > that, so he doesn't get a swelled head or anything.. :-> His site is > at http://www.howdydave.com > The main U.S. Ep. Foundation website is at http://efa.org . > The Epilepsy forum is: > http://brain.hastypastry.net/forums/forumdisplay.php?f=133 > There is a place for definitions as > well --> [quoted text clipped - 4 lines] > neurology has a great number of quality sites as well. this is compiled > by a neuro in Hungary. That should get you started. I volunteer to maintain the list. >> But posting the URLs would help :) > [quoted text clipped - 34 lines] > > That should get you started. > > Hi everyone: > > <snip> [quoted text clipped - 6 lines] > > I assume that you're having a bad day. I don't think G will respond to that, he has to much class.  Signaturetim@one(bug)pest.com Remove the (bug) to email me. Hi everyone: As per my earlier post in this thread... Before August 9th 2005 (The night I was diagnosed with Diabetes AND what would turn out to be the start of my eight week hospital stay), THE ONLY thing I had to take was 3 Phenobarbital (3 pills @ 100 mg. each) at bedtime. Now I have the following to take... DAYTIME: 2 Depakote @ 500 mg. each (Epilepsy) 1 Depakote @ 250 mg. (Epilepsy) 1 Metformin ER @ 750 mg (Metabolism) 1 Levothyroxine @ 0.075 mg (Cellulitis) 1 Furosemide @ 40 mg (Cellulitis) 1 Ranitidine @ 300 mg (Metabolism?) 1 Aspirin @ 325 mg.(Metabolism) 1 Multi-Vitamin (Metabolism) 1 Potassium Supplement @ 595 mg (Potassium - Taken only when I don't have access to fruit or other food that has it) On top of that, here's my night time list.... NIGHTTIME: 2 Depakote @ 500 mg. each (Epilepsy) 1 Furosemide @ 40 mg.(Cellulitis) 1 Zocor @ 20 mg.(Choloesterol) 1 Lisinopril @ 5 mg (Cholesterol) 1 Ranitidine @ 300 mg (Metabolism?) 1 Aspirin @ 325 mg.(Metabolism) 1 Potassium Supplement @ 595 mg. (Potassium) Can you say I HAVE A MINI-PHARMACY??? Hope this helps :D Cheers :D Pat Cook Denver, Colorado lol. so do I topamax, periactine, gabapentin, vicodin melatonin ibuprofen more acetaminophen... > Hi everyone: > [quoted text clipped - 52 lines] > Pat Cook > Denver, Colorado
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