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Epilepsy - need a neurologist I think..?
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enigmaburn posted:
Hello, and thanks in advance for your time and help.

I have congenital epilepsy, having my first seizure when I was 17. Over the years since it was not bad actually.

I am also an alcoholic and have Bell's Palsy which first came about 2 years ago. Alcoholism is bad, I know and I am trying to beat it with AA, usually pretty well. As to the BP, that seems 'mild' I guess, only minor affects to my face after initial rehab that most would never notice.

The alcoholism makes everything MUCH worse I know, but I have stayed off the sauce with just 3 relapses for a few days each over the last 2+ years. So I am trying and mostly succeeding.

Back to the epilepsy - and I have to take this slow - you'll see why when I explain. (I am on 300mg of Dilantin or (Ditoin) as it is known locally) daily) The last couple of years, yes more often than not couple with the after effects of a relapse, when I did get an occasional seizure I have had a stream of thoughts come to me 15 seconds to a minute before.

After the first time or two I realized what it was and sat down, trying to be safe and make myself relax and think of other things. It has worked once.While these thoughts are real, they are strange and disconnected, coming in a flood that is hard to stop. Really hard to stop the thought train.

I understand you can't help me if I am a drunk and that is only fueling the fire. I am sober, not drinking and have been for the majority of 2-3 years. I want to get better in ALL ways and I need some advice from a seasoned professional.

Before we get to it, I am an American living and working in Thailand for 12+ years. I cannot afford a trip home to deal with this (and would lose my livelihood as well), and the few *good*, international hospitals they do have here - in Bangkok only - are distant (I am east by Cambodia), and cost prohibitive as well.

I have tried to cover all bases that I could think of. Should you have any questions please do not hesitate asking.

Best regards and thank you for your help,

EB -
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dancer86442 responded:
Hello EB,


I am glad you joined us! I Do Not Judge! OK? I have had Epilepsy 60 yrs. I'm not a Professional, but, I am Seasoned. Can I offer you my support? You have taken the First step & shared your Journey. You need us. You can ask questions, comment or vent. I will be listening. You can read My Journey, by cliking on my pic or ID.


My Question. You are aware/ Understand the Danger of Drinking & medication interactions? Yes, it will affect your seizure status. Plus, when you are drinking & medicating you are being Very hard on your Liver! Twice as Hard, as Dilantin is absorbed by the Liver, too. But, you Are Trying! Don't Stop Believing. In Yourself & your chances of success. Just so you realize you are not alone. I am not an alcoholic. Long Story Why! But, I Used to 'enjoy' a few drinks (hate beer! ) & would skip my meds those nites. One nite, I was standing at my Island counter, looking at Hubby across the room in his chair. I swear, the whole room & him Zoomed in on me & then moved far away. Physically & visually. After 1 Shot of Whiskey. My GF noted Instantly. Asked if I was OK. I couldn't speak. She & Hubby led me down the Hall. I made it halfway & had to lay down. Took several minutes b4 they could get me back up & into bed. My thoughts were like a run away train. I had to Focus Hard to let them Help me Up. Once in bed, My GF, Best Friend Ever, for 35 yrs, stayed w/ me & talked me down. That was the Last Drop I ever Drank! TOOO Scary! My Blood Pressure drops are Scary Enough, w/out adding Fuel to the Fire.


I am thinking the stream of thoughts are possibly Auras. And you are rite to seek a 'comfort' zone. If you have these Issues while 'sober' or not, (That Truly is Up to You! ) you need to note them in a journal. Please, note the post in Helpful Tips.


Questions: Do you take your meds, same time, everyday? The days when you had your 'episodes', any Stress? When was your Last 'episode' w/out alcohol? How is your Diet? Do you take any Vitamins/supplements? Are you coping w/ Dilantin as far as Side effects?


Know we Care & that you are now Not alone. Hugs


Love Candi
Prepare Now! November is Epilepsy Awareness Month. Find or Create an event to educate Others'.
 
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enigmaburn replied to dancer86442's response:
Hello Candi, nice to meet and thank you for your support. I guess I should have just assumed since there are many others out there that have epilepsy - and probably man, many more who abuse alcohol - that there would be others who share my affliction.

Still came as a surprise, I wish this upon no one else. Thank you for taking the time!

Okay to answers your questions: Yes, as I stated pointedly three times in my initial post, that I know alcohol is a BIG problem and only adds it, making ultimately unmanageable.

That is why at two points I said sobered up and I have only dealt with occasional relapses since then. I don't think in hindsight even at my worst point WITH booze, that my seizures ever were more than 6 a *year*. So I am not at the level I hear of some of the cases and scary stories, thank God.

Moving on. "Auras", interesting idea and seems to jive with the definition(s) I found here and elsewhere. I would have thought auras were a little different and creative each time they appear! Mine are *exactly the same* and based on a series (I think almost ordered even?) of memories from my childhood, maybe 10-15 years, or 3-5 to 18-20. They are meaningless and disconnected when they appear and without my being able to put them into context, and even that's hard to remember in some cases, they would remain utterly meaningless, ramblings of thoughts.

I am actually scared to think about them proactively because I worry they might trigger a seizure(?) But, I see the direction you and other are approaching it; that if you put them into proper context and couple them with their proper historical memory, that they could lose the power to overwhelm me or become more controllable. Nice. I still have to wait until I am in a safe, comfortable place to try that the first time!

Do you take your meds, same time, everyday?

No. I got into the habit of doing it for a little while (4-6 months) before bed every night - all 300 mg. Then a [Thai> DOCTOR told me not to do that and 'load' it at the beginning of the day. Then another doctor and pharmacist told me that the Ditoin I take locally does release the same, and I should take one dose, three times a day! The literature on bottles, same the whole time says, "Diotin - Prompt Release - Penytoin Sodium - (Diphenylhydantoin Sod.) - [Atlantic Labrotories Corp. Ltd. Thailand>. I can't get anyone to agree..? The docs are neurologists BTW...

The days when you had your 'episodes', any Stress?

YES! More centered on stress, insomnia and general fatigue! MUCH MORE than alcohol relapses! I had another another doc give me a wicked sedative script and tell me to double dose on Diotin immediately if I felt in 'danger' (overstressed and fatigued), or actually sensed anything. That worked well!

When was your Last 'episode' w/out alcohol?

Beginning of March for 5 days, employer did something really crappy to me so I responded like an idiot as my mind told me to.

How is your Diet? Do you take any Vitamins/supplements?

HA! Well, I take no supplements, although in the past when I have they made me feel better (Vits B and K I think). Natural diet?! No: Thai food is good for a treat sometimes or a cultural experiment, but living with it!?!? Jeez,I'm not big a fan of veg, and these people being able to make celery spicy as bejesus should serve as a warning...

Are you coping w/ Dilantin as far as Side effects?

Dilantin (Diotin?) has side effects? Huh, well - I have something to look forward to!

Thanks Candi, *really* thank you! Love right back with ya from me. Take care of yourself too and we can talk more soon!

Billy -
 
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dancer86442 replied to enigmaburn's response:
Good Morning Billy,


Correct me if I'm wrong, but, it seems you have kept your sense of humor, despite your Issues.


As long as you are Aware of Dangers, I will not bring it up again. Although you Can, if you feel it's therapeutic to 'talk to us'. Yes, Lots of PPL are in the same boat. My BFF's Hubby had his 1st gran mal seizure at the age of 52. But, I had seen signs of other types of seizures way b4 then. But, My GF was 'blind' & as Drunk as Him Most times. Anyway, he took his Dilantin for a month, whenever he remembered & drank the whole time, too. His Myoclonic Jerks got worse. When my GF 'woke up' & realized she could no longer tolerate his alcoholism & other Issues, she booted him out. His habit was more important to him, than his Family.


Yeh, my seizures weren't 'often' either. But, I didn't like waking up w/ blood all over my face & hands. I never realized others' had it worse, until I joined this group. Shoot, 10 yrs of Drs/treatments & I still didn't know what a seizure Was!. Or that there were so many Types. But, I have educated myself. Thanks to the encouragement of others'. Aura's such as yours are actually simple partials AKA petit mals. Anytime , 2 or more episodes, are similar, they are seizures or electrical mis-firings, as I say. If you start taking your meds 'regular' you will maintain a steady dose in your system & possibly eliminate the auras/seizures.


OK, Get yourself back on supplements. The one's you were on, Plus 500IU Calcium Citrate! 2-3X's a day. 'Preventives! Dilantin & other meds can cause bone density loss. Plus, D3, to help absorb Calcium & Prevent Depression. Diet: Lower your carbs, increase your protein. Yes, fruits & veggies are important. But, I Think you are supposed to avoid Grapefruits, on Dilantin. Something you can make yourself. Smoothies. Looks Gross, Taste Great! On-line recipes. We use the Green Smoothie.


Meds, once again : I had only been on mine a few mths b4 getting PG. I was taking 3x a day. And falling asleep w/in an hr or 2 after each dose. called my Doc & said Hey this ain't gonna work. I gotta be able to take care of my baby. I am Gonna take Full Dose at nITE. ok? ok! iT worked THAT WAY FOR ME. sO, WHAT I AM SAYING, 1 DOSE OR 3 DOSE, IT DEPENDS ON WHAT wORKS FOR yOU! yOU KNOW YOUR SYSTEM BEST, SO YOU ARE IT'S OWN BEST ADVOCATE. Whoops, didn't realize caps was on. My medication is a 'horse sedative' & the Oldest med available for seizures. ( Dilantin runs a close 2nd ) & PPL are always amazed at my dose. I should be in a comatose state all the time. I've been accused of being a drunk. at 9am in the morn. I was just trying to get acquainted w/ my son's new friends, parents. I was 'confused' about her reaction, but, blew it off. The kid told me the next day that his Mom didn't like me & Why! I see pics of myself, now. I see why. But, I don't care. Some ppl just ain't meant to be Friends.


Oh Dear, rambling. Think about using meditation or yoga. Music Therapy. Or even a Good Book. Take One day at a Time. Yep, holds true for Epilepsy, too. Hope I covered everything. Suggestion: If you haven't already, save this page as fav, after logging in & write down ID/password, just in case. Hugs


Love Candi
Prepare Now! November is Epilepsy Awareness Month. Find or Create an event to educate Others'.
 
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ktexas1026 responded:
Hi EB,
I'm Kim. I don't know how much "technical" info I can offer, but just wanted to add my experience (the parts that are similar to yours). The thing that caught my eye in your post, is when you talked about the stream of thoughts that come to you & can't be stopped. I have had that a few times also. I honestly didn't even think to associate it w/ seizures, but that's also b/c I don't know what my triggers are yet (pretty new to the diagnosis myself). But I DO remember thinking "OMG, where is THAT coming from???". I have ADD also, so I'm used to my mind wandering &going off on random thought trails. But I have never had something like what you described, and you described it better than I could. The thoughts were intrusive, even though they were random & had nothing to do with each other"026 which is also how my "confusion spells" are"026 which I agree w/ Candi that they are some type of aura (and I think as many people that have seizures, there are as many possible auras out there for each one). These "thoughts", for me, came in as if a movie was playing in my mind but the "movie" was sped up so that I couldn't keep up with it & each "scene" was strung together in a random way so that none of it made sense. It was confusing b/c they weren't just thoughts, they were mixed w/ memories of actual events too"026 again, none of which were related to each other. They came like rapid fire from a gun"026 just boom-boom-boom-boom. And then it was like "WTH was THAT?!". LOL So, I agree with Candi, I definitely think it's an aura of some kind. It's good that you recognize it when it's happening too. I don't (yet), & it's only afterwards that I say "Ohhhh, now I see".

As for the alcoholism, I hate to keep saying I agree with Candi (LOL), but I agree there too"026 no judgements here. We all have unhealthy habits that are hard to break, things we know are unhealthy, and even things we know can make seizures worse. And don't be so hard on yourself, it sounds like your'e doing really well. And even though I'm not an alcoholic, I have friends that have had troubles in that area, & I honestly don't know how you do it, or how they EXPECT you to do it, when you've been in that pattern for so long"026 it's habit that hard to break. So I can imagine it takes a LOT of self-discipline & hard work"026 so with only a few relapses, as you mentioned, only a few over a few years"026 that's better than not trying at all. It takes time to break that kind of habit, but going in the right direction in huge!

I wish I had some advice on the doctor/overseas situation. I can't imagine it's easy to find a doctor over there. Especially when they are all giving you a different story. I think if there is a good doc/hospital in Bangkok, maybe you can find a doc there & explain the situation on it being too far to come for regular appointments & ask if there is a way to handle treatment while also minimizing cost AND travel. That has to be a tough situation to be in & I'm not really sure how I would handle it either"026 so I apologize if that advice isn't very helpful. I guess the main reason for my reply is to say you're not alone. And don't be so hard on yourself.
~Kim
 
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enigmaburn replied to ktexas1026's response:
Hey Candi, and hello Kim,

Thanks for the information you both have offered. Sometimes I think that the information and insight from a 'non-professional' and someone who actually experiences the same crap might be *more* valuable than a text-book-geek-doctor. All respect for the docs, but still.

Kim your feedback is awesome and thanks for your supportive words, both of you. I think the things about auras that Candi has mentioned really has some valid basis and I plan on exploring it a bit in the coming weeks when I am comfortable.

Kim what you describe is perfect too! It simply an expansion of exactly what I experience and another way of explaining it that I agree with and that sounds eerily familiar. Once I recognized it - and yes like you the first few times was AFTER a seizure - but once I realized it I began to slowly see it prior to the event, unfortunately this has resulted in only 1 or 2 times of actually being able to stave off the seizure by relaxing and laying down. But it is valuable that when the thought stream is recognized, I realize that the 'freight train is about to go off the rails' and can at least try to put myself in a safer situation; such as many months ago when I stopped my motorcycle suddenly, locked it and laid down curbside while confused store owners told be I couldn't park there! The twitching within a minute when I did seize, changed their opinion of that.

In this way it can be very helpful! And I am heartened by Candi's posts because I do truly think it makes sense to explore that. I also going to start timing my doses throughout the day on a strict regiment to see if that helps.

Finally Candi's thoughts on nutrition - *sigh*, something I generally loathe - also sound like solid thinking for overall health and thus diminishing epilepsy's grasp on me.

Haven't been drinking for weeks now! Doesn't mean I feel completely better yet - it takes time to shake the effects.

You're absolutely right Candi - waking up with a blood covered pillow and face, while your tongue feels like a chew toy SUCKs! Like, really sucks!

Sorry for my absence, I did miss you really! I had to check myself into a local hospital for a few days because I just felt that dodgy. I didn't actually seize, just got twitchy and chewed my tongue at night for good measure. But, that's better than the food they serve in the hospitals here actually.

That was followed by a brief, unwanted, trip to Cambodia, to deal with via/immigration issues while I wait for the new job to get their *** in gear.

It is a hard life, and it doesn't seem to be mitigated by the path I have chosen. I have grown disillusioned in recent weeks and months and found myself deeply depressed, thought of giving up, and considering a radical solution that is inappropriate. It is not helping.

I am hard on myself, I know that. I have a hard time trying to bright, cheery and without pains weighting me down when my life seems to be a constant problem. I don't know anyway other than being hard on myself to keep the ship afloat, perhaps that is something I should explore learning about.

Thanks for talking to me ladies and taking the time. It is much appreciated and it helps. Thank you!

Billy
 
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dancer86442 replied to enigmaburn's response:
Hi Billy,


I don't mind if you are 'absent'. But, you Did have a Legit reason. Bummer about the hospital trip. Hopefully, as you Learn more, there will be fewer of those Visits. I know once your job starts you won't have much time for us. But, try to fit us in.


OK, Depression! A common side effect of Alcohol & Epilepsy. Definitely find ways to fite it. Am I repeating Myself?? You can take vitD3. Up to 5000IU. Start w/ 1000IU increase weekly as needed. Exercise: Doesn't have to be a hard core workout. A simple walk around the block can help. Nutrition: Well as much as ya 'Loathe' the thought, think 'seizure control' & TRY!


OK I got company rite now. So gonna have to cut this short. Lots of Hugs! Take care of yourself!


Love Candi
Prepare Now! November is Epilepsy Awareness Month. Find or Create an event to educate Others'.
 
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enigmaburn replied to dancer86442's response:
Thanks Candi!

Much love and hugs right back at you! Indeed when thing are going 'good' there are few visits, this was a hard few weeks and maybe a visit to the Thai idea of a hospital was what I needed for proper smack upside the head to remind me, "you don't want to be here!" Stay off the alcohol, get information, take care of yourself and share with friends.

That being said, you know I will always find time to see you guys! I feel that is an integral piece of the puzzle now!

Exercise...? *groan* Why do you always test my love with such topics? Seriously though, my recent move put on the fourth floor of an apartment building and Thais often don't doing believe in such luxuries as 'elevators'. So amid much cursing, I am getting much more daily exercise than I have in a while!

On the nutrition front I tried a fruit smoothie rather than my usual coffee a day or so ago - thinking of you of course - and much to my surprise it didn't suck! Might be even better if I can get the girl to understand me and give me a 'mixed fruit' version rather than mango variety...

Vits will follow soon when I find a pharmacy that seems to understand the concept of 'health'.

Anyway have fun with your company! I got run and get my laundry too - hey see?! Exercise!! (Damned steps..)

Billy -
 
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dancer86442 replied to enigmaburn's response:
Hi Billy,


I think it's Sweet that you think of me so much. Even better that you Remember what I've Said. <3 Here is Hoping that that was your last visit to the hospital. Got music? Soothing music. Visit Phylis again & learn how Music can help lower stress. Another Trick/Tip; Try breathing exercises. Specifically: Pursed Lip breathing. Nothing Physical there. Just inhale thru nose, from Diaphragm. Hold 5-10 seconds Exhale thru pursed lips (whistle is OK ) 10-20 seconds. Exhale twice as long as inhale. Repeat until you feel calmer. This actually helps when trying to fall asleep, too. Maybe 2-3 times, b4 bedtime, to relax you. What it does: It rids the brain of 'bad' oxygen that can cause Stress & replaces w/ Fresh & calms the Neurons in your brain.


Smoothies: If you want them made w/ fruits & veggies of Your choice, get a blender! Then You control what goes in it. Can't be that hard to find a store w/ fruits & fresh Greens. BTW: My Sis said it is best to drink 2 a week made w/ Baby Spinach. Then use Kale or Kelp the rest of the week. If you use Kelp it tastes a bit sharp, but, extra fruit or even some seasoning helps. Canned or frozen fruit works just as well as Fresh. Not sure where you would find ground flax seed or Almond Milk (unsweetened) though. But, if the ingredients can be found by a Vendor, it shouldn't be Hard for you to Find. I'm Glad you like the taste of them though.


Wow sounds like you are having a bit of a rough time over there. Pharmacies, grocery stores, job. Sounds quite frustrating. I'm sure you will adjust w/ time. One day at a Time.


I had a great time w/ my Friend. As usual. Today, Hubby took me across the Colorado River to Nevada. Laughlin, Nevada is gearing up for their annual Biker Run. Every Year, I hear the motorcycles coming & going where I live. But, I rarely go to see the Action. Today was an exception. Hubby ain't working tonite & I needed to go pick up my pay from the Vince Gill concert last Sat. Saw some really awesome bikes. Even some w/out Motors were being sold. I rode one & Wow, what a smooth ride. But, for $250 w/ no gears or whatever. Not Even!


Oh well. Another Day. I see I have some new posts. Say Hello to them if they reply. See ya next time. Hugs


Love Candi
Prepare Now! November is Epilepsy Awareness Month. Find or Create an event to educate Others'.
 
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enigmaburn replied to dancer86442's response:
Be right back...
 
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enigmaburn replied to dancer86442's response:
Sorry for the delayed reply Candi,

It just means I miss you even more! And I do! A few days ago when I forgot some materials in my apartment and had to climb back up to my apartment to get them I grumbled my loathing as trudged up the steps until I thought of you - and giggled, "Candi would appreciate me getting the exercise.."

AND believe it or not you got me on a "health kick", (as in, 'not wanting to kick the bucket'). I have actually signed up for calorie counter/nutritional plan analysis stuff online. It is interesting! It takes a while to load sometimes because I think the system processing is going through a metaphorical, 'holy...&%?!' loop, before it returns the analysis for someone it assumes should be dead by now anyway.

Aside from trying to reconcile where three Cokes, a KFC chicken burger and a half bag (small bag) of Doritos fit into my diet profile it has been going great!

Today for example I ACTUALLY came in at my recommended low calorie count! And I was thinking of you as I walked around the grocery store mumbling to myself about buying 'bird food' for dinner. But I have had yogurt - yes yogurt, effectively spoiled milk from a controlled environment, with mixed fruit. And these lil' mixed fruit cups from Dole ain't bad either! Oh yeah, and smoothies!

Now, I suspect my body in terms of intestinal function has reacted at times asking, 'What the #@& is this?!' And, 'I don't know, what do you think we should do with it?' But game on!

I am also taking Centrum A-Z and a Vitamin B complex (1-6-12). I take my Dilantin more strictly between 7-9 am everyday now with my vits. The result is that I have been feeling great!!!

Here's the kicker (not related to the bucket, forget the bucket), I tend to be pretty hardcore when I take on something as you can see. So I started researching vits and mins, especially ones that were harder to get naturally or that I am deficient of.

Now to interject here - remember that last hospital visit recently? - a nurse came up to after a CBC (complete blood count) showed I was deficient in potassium. "Important you have potassium"! Was about the extent of her medical advice that she told me - in Thai nonetheless - and she had me drink a shot of some nasty salt-pasty-gel-watered solution.

Well, it was doing this 'noo-trid-in-uul' stuff that you recommended that reminded me that I had been made to drink that nasty stuff other times in earlier hospital visits too...

So, I set off to learn more about the vits and mins like I said. I was reading through Wiki's potassium page - and even though I have some decent chemistry education it is like reading Chaucer in Sanskrit for the most part - when I got to the "Biochemical Function" section and had a 'holy %#@&' moment of my own!

I strongly recommend you read it! http://en.wikipedia.org/wiki/Potassium (You might want to skip ahead to that section and ignore the industrial uses, fertilizers, dangers and so forth... )

Now I am not a doctor nor am I on the 'up-and-up' with my bio-chemistry but what section describes made it very clear why the doctors were looking at and then dosing me with potassium and the nurse communicated it as 'important for you - drink it!' That section describes biological functions that would seem to be a central concern to those with epilepsy!

Like many good things it has to be taken within a range or it can be negative. Still that being said, RDA says I should 4,700 mg of the stuff a day!

I haven't invested in buying a salt lick to set up in my apartment yet, (joke, wrong type of salt anyway). But I am definitely scrutinizing my intake more closely and eating a lot more bananas!

OH YEAH - the concert and bike run stuff you got to do sound awesome too! I am glad you and your gent had a good time! I have used up most of the space here, so I will leave more of my musing until next time!

Take care (and eat a freaking banana I guess!),

Billy -
 
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dancer86442 replied to enigmaburn's response:
Hi Billy,


Believe it or not, I haven't ate a whole banana in Yrs. Why?? Cuz, one day after eating a Whole one, (never have ate them on a regular basis) I got stomach pains so bad I thought I was in Labor in my stomach. But, good to hear you are doing your 'homework'. Yes, there are so many possible 'deficiencies' that may trigger seizures. But, then again, too much of some nutrients/additives can be bad. To much salt can trigger seizures, too. My daughter: it blocked the ion channel in her brain causing More seizures. Docs made her quit drinking water & substituting Gatorade/juices for weeks to get her back to norm.


I know lots of PPL who Insist that Diet/nutrients are the answer to Control. My Sis is one of them. But, lots of ppl on Facebook agree w/ her, too. Unfortunately, most of our Drs do not seem to think this way. You would Think they would Want us to try 'Natural', but, then they wouldn't have a way to Make Money. Rite? Or maybe it's just the process of elimination/addition of certain additives/nutrients, etc, that 'scares' them. It's good to hear that it is different w/ your docs.


I know what ya mean about the Articles. I have learned to 'skip' the terminology & try to read between the lines till it makes some form of 'sense'.


Suggestion: Do not take meds & supplements at the Same Time! Try to take supplements 1/2hr or More b4 meds. Someone said 1/2hr or more after works, too. But, makes more sense to me to take b4, when you have the Least amount of 'drug' in your system. Your med can deplete you of quite a # of nutrients. Or cause them to be improperly metabolized/dissolved/absorbed/whatever.


Sounds to me like you are doing sooo good. Next concern: Dilantin! Again, do your Homework. This is not a good med to be on 'long term'. Bone density issues. Gum issues & More. An annual visit to your Dentist is a Must! I know epilepsytalk.com/Phylis would back me up on That! Not to mention those already having those Issues. Just a 'heads up'


OK gotta go now. To much distraction from Hubby. My 'Quiet moments' on the comp are over for the Day. Lunch & Nap will take care of That!


Stick w/ the progress you have made. Stay strong! Lots of Hugs!


Love Candi
Prepare Now! November is Epilepsy Awareness Month. Find or Create an event to educate Others'.
 
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ktexas1026 responded:
Hi!
OMG"026 I have been trying to log in for what seems like a MONTH! Every time I hit "reply" to this discussion, it makes me log in again, only to NOT let me reply. UGH. So, I have been able to READ you guys' discussions, but couldn't reply. I didn't disappear I swear. LOL

Of course, now I don't remember the things I wanted to respond to. haha But I have enjoyed seeing your progress. As far as eating healthy, you're doing better than I am, for sure! And I actually laughed out loud at your salt lick comment! I have said that SO many times, & gotten so many strange looks from people around here who have never even HEARD of a salt lick! LOL I'm from the south, & now living in New England"026 where there is hardly any hunting going on, so no one knows what a salt lick is used for. Although now I can't think of what else it is used for either, I'm sure it's used for other things too. But glad to know I'm not the only salt-oholic out there. The bad thing is, I have low blood pressure so my doc actually recommended MORE salt. And I told her she wouldn't say that if she saw how much salt I put on my food. haha So I'm going to go from low BP to hardened arteries in a snap"026 one of these days.

The other thing I wanted to comment on (that I remember-LOL), is that i want to check out the link you posted about potassium. I know that it's crucial for heart function, but I'm STILL learning what all can affect seizures since like you, I'm trying to make any adjustments I can make, the ones that are in our control anyway. And so I'm very curious about things I might be doing that's contributing to seizures. I know some of the things"026 like caffeine (a vice of mine--actually, it's the sugar b/c caffeine doesn't wake me up like other people"026I WISH it did!), alcohol (doesn't mean I don't have a drink (but I'm sure that with seizures, it should be Zero drinks), stress, diet, etc, etc. And I have been trying to do smoothies too, mainly b/c I don't eat breakfast (never have). And someone told me about adding spinach/kale to add vitamins/etc"026 and they told me you can't taste it. I call BS! LOL There is NO way that something that LOOKS nasty, doesn't TASTE nasty too! hahaha I joke, but I know they're healthy. I just don't know I could go that far. maybe a spinach LEAF. So let me know how it goes & MAYBE I'll try it.

One last thing I wanted to comment on, and I'm glad to hear that you're doing better in this department (or it sounds like it), is the depression part. I agree with Candi, even if there are no other factors besides seizures/health issues, that's enough in itself to cause depression & similar problems. Nevermind anything else going on in our lives that might contribute to it too. Any chronic health condition that requires so much management & medication "calibration" puts us at risk for that. I think a good support system, even if it's online, is huge! Not many people around us know how to deal with something like this, or anything chronic. I have chronic pain too & it's so misunderstood b/c no one can SEE its affect on our bodies. Same with seizures, so it's really easy to feel alone. I struggle with that myself. Some days are good, some days make you wonder how you can go forward. I can totally understand that. I try to tell myself that tomorrow the medication might kick in & start REALLY helping, so I'd regret giving up a day before. Or tomorrow, I might find something in my diet/habits that can be adjusted to fix the whole thing. Not likely, but you see what I mean. So, just wanted to say you're not alone in that department either, although I bet most of the people here can say the same at one point in their lives or another.
Hope today is a good day"026 for everyone.
~Kim


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