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Newbie question on phantosmia
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ktexas1026 posted:
Hi~
I'm Kim. I've been looking for some info online & thought I'd post here, where people who have experienced seizures might have some insight. I have a followup with an epileptologist in a few days so will get more info then. But they've said I'm possibly having seizures after unexplained bouts of memory loss (losing chunks of time) & other symptoms. Also had an abnormal EEG, followed by a normal sleep-deprived EEG.

There's much more to the story, obviously, but my quick question was in regards to phantosmia. I've heard that it can be an "aura" to a seizure, but I was curious if anyone w/ seizures ever experienced olfactory hallucinations that didn't go away. I smell cigarette smoke that has become more & more frequent over time. I was under the impression that if it was due to seizures/epilepsy, that it wouldn't stick around all day like mine seems to (when it is present, it is present almost all day, sometimes so strong it's hard to breathe). So I was curious if anyone had this symptom & what your experience is with it.

Thanks so much for any info! Hope all are having a great day! A seizure-free day!
~Kim
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dancer86442 responded:
Hello Kim,

I apologize for not answering sooner. Welcome to WebMD Epilepsy Community AKA Epland.

Yes, I have olfactory auras, too. Thankfully, they don't lead to Bad seizures. Most likely because my meds control the Bad seizures. Some days they last for a few seconds, other days they last for a few minutes, but reoccur over & over & other times they just don't/won't go away. Mine are more frequent as the yrs go by, too. Or at least I think so. I had seizures (3 convulsions) as a babe/toddler, over 60 yrs ago. I May have had Unseen or silent seizures but, the convulsions went into remission for 25 yrs & resurfaced after a head blow. I knew nothing about Seizures or Auras for over ten yrs after they resurfaced, so, never kept track of the symptoms. I didn't even Know I had 'silent' seizures (seizures w/ no apparent activity) until I had a Portable EEG done about 5 yrs ago.

Suggestion: Under Tips please read the Journal Info. When you see your Epi, definitely Inform him/her of your auras/odd smells. The frequency & Length.

So how long have you had seizures? Have you had other Types of seizure activity? Are you on any medication to control them?

If you have any more questions, please ask. Knowledge is Power! I Promise to try to chek the boards More Often!

Love Candi
 
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ktexas1026 replied to dancer86442's response:
Hi Candi!
Thanks for your reply! Nice to "meet" you. I definitely have included the smell of smoke in all my appointments. I just always had the feeling it was connected to my memory issues. I was thinking that phantosmia in people with seizures, only lasted a few minutes at a time, so I was worried that the possible "answer" (that it is seizures I'm having) was going to be blown out of the water since my smell of smoke sometimes lasts hours at a time. Sometimes it's only a few minutes at a time, but a lot of time it's hours.

I saw the neuro/epi on Friday, & he started me on keppra to see if it helps my memory problems. He suggested I do a video EEG, either at home or in the hospital, but I preferred trying the meds instead of waiting another month for the VEEG. It's already been over a year with no answers so I couldn't stand another month going by without some sort of answer/relief. I told him if the keppra didn't help within a month, we could taper off of it & try the VEEG then. he agreed that was a course he would do himself, so that's the route I'm currently taking. Sadly, the internet doesn't have as much info on keppra/seizures as I thought it would. My personal experience, so far, has been very different than the supposed "data" from doctors/scientists. I am sure I will have LOTS of questions.

Actually, what I've read on keppra is that it can cause "sleep disturbances" & cause weight loss/loss of appetite. The first 2 nights I've taken keppra, I had the best sleep I've had in YEARS, & I also woke up with my stomach growling (and I've never been a breakfast eater b/c it usually takes me hours to get hungry in the morning). I'm not sure if these are just coincidence or not since this goes against what docs say the side effects of Keppra are.

I have lots of questions on seizures, & meds, so I look forward to talking with all of you, who have experienced it & gone through it all already. I think it is odd that I've developed seizures in my late-30's, unless maybe I've been having them all along & just never knew.
Thanks so much for welcoming me!
~Kim
 
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dancer86442 replied to ktexas1026's response:
Kim,

Every ones' System is Different! So what others' experience on any med, even Over the counter meds, can be different. I don't put much stock in what Drs/Researchers have to say about meds. . My Pharmacist Knows as much or More. Even talking to ppl on the same med, you get various reactions/info. It's Best to just Note what You experience. Although it is Good to Know what to watch for.

You are still in the adjustment Phase so things may change. Give your system at least 2-6 weeks to adjust to your med. If you don't note Any improvement or your Lifestyle is compromised by side effects, then you may have to try another med, yet again. I do know you Mite wanna consider adding B6 to your vitamin regimen while on this med. Keppra Rage can/mite be a side effect & B6 can control that. Highly Recommended! Even if not needed. BTW: My Daughter was on Keppra & noted she started having Awful Nightmares! She was Killing People in her Dreams. Be sure you are taking a multi-vitamin, also. You may want to add extra Calcium & vit C, too. All our meds are known to deplete some essential vitamins/nutrients from our systems.

Kim, Epilepsy does Not Discriminate. It is said that 1 out of 10 people will have at Least One Seizure in their Lifetime. But, Epilepsy (more than 2 episodes) can occur at any Age! But, children & elderly are affected the Most.

Kim, our Family is Small at this time. But, I have been here a Long Time & will gladly answer any questions. So, stick around. Pay It Forward by saying Hello to any Newbies who join us. Let them know they aren't alone. Your Support is Just as Important, if not more so, as any Info you can supply. Lots of Hugs! Stay Strong!

Love Candi
 
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saxofone1 responded:
Hi Kim,

Welcome to the family.

Are you simply smelling smoke or are you around smokers/second-hand smoke. I ask because I have had a few sudden experiences of confusion when I've been around smokers. My eyes would water and I would have extreme headaches followed by the sudden confusion.

I asked one of my nurses about it. She said that the smoke must likely caused an interference with enough oxygen reaching the brain. The oxygen shortage must likely caused those feelings.

I've been on Keppra since it was in research back in the 90s. I have had good results with it. Give it some time.

Again, welcome to the family. I'm open to all questions. Good luck on this journey.

angie
 
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ktexas1026 replied to saxofone1's response:
Thanks, Candi & Angie!
I appreciate ALL the support & advice. I haven't had too many issues on the keppra so far, but I'm SO ready for the smell of smoke to go, & STAY away. I am hoping that getting up to the "therapeutic dosage" will be the trick. I am not crazy about having to start all over with another medication if this one doesn't work. But I look forward to learning everything I can about seizures/etc. I know plenty of people deal with seizures on a much worse level, so I'm not complaining by ANY means.
Hope all is well with you guys & look forward to talking again soon!
~Kim
 
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saxofone1 replied to ktexas1026's response:
Hi Kim,


You are quite welcome. I have found some very good books about ep on Amazon. Thirty-eight yrs of ep and I am always looking to learn more.

I understand how you feel about not wanting to have to seek a new med. I have been on at 10 different meds since this started in '75.

Do continue to be patient. Don't give up if this one isn't THE ONE for you. Patience and inner-strength play a big part in living with ep or any medical condition.

You looking for answers and sharing your concerns. That in itself is a big step forward.

angie
 
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hula_dancer73 replied to saxofone1's response:
kim,

I have auras, but they don't last more than a few seconds to a few minutes,\. I ahve a VNS which I am able to stop the actual sz fron hitting. I run a pecial magnet over a device in my chest and that stops the szs. Not always but alot of the ime.

bring up t he VNS with your epileptologist and see what he says maybe that might be an aotion for you.

I ahve had all bad EEGs since feb of 03 and got my first clean one 6 months ago.

I wish you the best in finding out what is wrong. I kow it cna be tough, it probably has been for everyone on here.

Nancy

btw I had my first sz at 29.
I live on O'ahu in West Honolulu-GO UH Warriors!
 
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ktexas1026 replied to hula_dancer73's response:
OMG, you had your first seizure at 29??? Well, that makes me a feel a bit better also, b/c I keep thinking "without a head injury, I probably wouldn't start seizures in my mid- to late-30's, so maybe it isn't seizures". It sounds silly, but my biggest fear is that it ISN'T seizures, which would mean they have no clue what is causing my symptoms (moments of memory loss, confusion, & phantosmia). So at this point, I would much rather it be seizures than some unknown.

As for the VNS, I am just in the beginning of the treatment phase, & the epileptologist hasn't said with 100% certainty that it IS seizures, so I wouldn't want any surgery or procedure unless they told me that I was, for sure, having seizures. I'm hoping the Keppra will somewhat diagnostic, since my only other choice was doing a 5-7 day VEEG, which is difficult for me at the moment with starting a new business. Which is why I opted for the trial of meds. I just had hoped I would notice some improvement from the first few doses. But I realize I also expect a lot from medication. I only have 2 more step-ups before I reach the full 1500mg dosage, & I've already had some pretty bad memory/confusion episodes & some still-suffocating smells of smoke... I would've hoped I would notice some improvement by now. Is this typical? I know it's also possibly that Keppra just isn't the med for me either. But I'm worried my doc might not want to just "try another med" since this is a trial thing anyway. I don't know, I'm just wondering out loud.
 
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dancer86442 replied to ktexas1026's response:
Hi Kim,

Unfortunately, it does take Time to build your meds up to a therapeutic dose. Our Metabolism is unique for each of us. So, how our systems metabolize our meds, determines how fast a med will work or at least be at an effective level. And yep it may not be the rite med, but, you gotta give it 2-6 weeks, After you are on the 1500mg dose, to Know for Certain. Not to worry> Depending on your tests & how you feel about the drug in a few weeks will determine IF your Doc will change meds. Keep in mind, sometimes, it can take more than 1 'trial & error' w/ our meds.

Hang in there. Hugs

Love Candi


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