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crystalbay

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I'm 69 and had my first grand mal seizure a month ago. a 24-hour EEG showed a whopping 30 seizures, so I'm now on Keppra and gradually going to 2000 mg. I have several concerns and have no one to ask about them. First of all, of the 30 symptoms described for "complex partial seizures", only ONE fits for me (3 times last summer I had difficulty speaking). Every other single thing does NOT fit. My behavior, alertness, astuteness and consciousness were entirely normal the day of the EEG. How can I be fully functioning and still get this type of seizure diagnosed??? I was told it's left temporal hemisphere seizure activity - whatever that means?

Another issue is that I battled Stage 3 esophageal cancer 3 years ago and the massive surgery altered my anatomy in a way that I have great difficulty eating enough to stay alive. I battle daily to keep from going under 110 pounds. I have zero appetite. The only time of day I can tolerate eating is after my 2 late afternoon wines (a habit 30 years old). Wine, in other words, is the only appetite stimulant I have. I'm concerned about the interaction of wine & Keppra, but I'm even more concerned about losing more weight. I've read that Keppra causes weight loss - a death sentence to someone with my condition.

Please explain how I can function at a highly conscious rate while having tons of seizures - and my behavior, cognition, etc aren't altered in the least?
 
Hi Crystalbay. I am not sure my response will be very helpful as I am not very knowledgable but I wanted to reply as you seem very concerned and it must be very confusing for you with all this new information and other health issues you are battling.

I have just been diagnosed with simple partial seizures. I am conscious throughout them but I do have very weird sensations (deja vu, fear, tingling, nausea, sort of hallucinations). I know that seizures are just a lot more complicated than the grand mal/tonic clonic ones we usually see on the TV. Simple partial seizures only effect part of the brain and do not alter consciousness so maybe this is what the EEG picked up? I think mine is temporal lobe seizures activity too (very new diagnosis though so not 100% as still waiting for the letter from the specialist!)

Have you tried having scandishakes or other types of nutritional shakes to keep your weight up? I am in recovery from anorexia (doing very well and a healthy weight etc.) and when I was on weight restoration in hospital we had those shakes to help us gain weight because the volume of food needed to eat was too much and the nutritional shakes were very effective.

I hope you get some more answers soon.:hugs:
 
Shonafrances:

Thank you so much for responding! During my 24-hour EEG, I was completely normal, grounded and astute (I'm a therapist intensely involved in dialogue several hours a day). Being utterly symptom-free while having all this seizure activity simply makes no sense to me. Frankly, it makes me feel a bit crazy given that no one has ever told me I manifest any of the partial complex symptoms, yet the EEG doesn't "lie". As to "complex simple", I haven't had any of those symptoms either.

Bottom line: I'm taking powerful drugs to deal with something entirely invisible which may alter my physical and emotional state as well as make it even harder to keep my weight at a survival level. I just booked a 2-day visit to Mayo Clinic (MN) for a second opinion, though. I can't tolerate anything like Ensure - makes me instantly ill (called dumping syndrome).
 
Hi Cristalbay, I just wanted to give you a warm HUG and welcome you to CWE! Although I'm sorry for what brought you here I'm sure you will find many helpful folks with tons of info. Although I understand the reason behind the wine and prior to my diagnoses (just 6 months ago), I LOVED wine :) Unfortunately, I'm one of the ones that so much as looks at alcohol and has a seizure.
What has the Keppra done for your weight so far? I was on it for a couple months and I gained...
Again, welcome!!
 
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curious

Every photo I submit results in "photo upload failed" - can anyone explain this??
 
Ah, not being able to tolerate things like Ensure must make it tough to keep your weight stable, that sucks.
I can't explain your experiences either as to be honest I am so new to this the only information I have is from the internet. I hope that you can get some more answers soon, is your consultant not able to arrange to discuss any of this with you? :hugs:
 
Hi crystalbay, welcome!

I think you are wise to get a second opinion at the Mayo Clinic. The doctors there may be able to help you evaluate the accuracy of the diagnosis, as well as the risk/benefit profile of taking medication. EEGs can generate both false negatives and false positives, so an additional round of EEG testing may help clarify your situation. You may ultimately decide that your seizure condition (if it exists) does not warrant medication. One factor to weigh in making this decision is whether the symptoms are escalating; since you went from what appear to be complex seizures with aphasia to a tonic-clonic (grand mal) seizure, this is a valid concern.

While Keppra can cause weight loss, not everyone experiences every side effect. If you decide that it's worthwhile to stay medicated, you may find that Keppra works perfectly fine for you. If weight loss starts to occur, you may find that it's worth trying another anti-seizure medication such as Lamictal. Generally, anti-seizure medications can interact with alcohol, but primarily in mutually reinforcing the sedative effect. So you may find that you get tired/buzzed slightly sooner -- usually it's best to proceed with caution until you know how you are affected. I take Lamictal, and have no problem having several glasses of wine.

Since you are struggling quite a bit with loss of appetite, low blood sugar or nutritional/electrolyte deficiencies (B vitamin, magnesium, etc.) may be a triggering factor for your symptoms. I hope you can find a way to maintain good nutrition, and that the keppra doesn't make things worse in the meantime.
 
I clicked on my name, went to "edit picture", and found my photo - just can't figure out how to make it into may avatar which appears with each post! It says "File did not upload".
 
Hi Crystalbay,

For the eating issue, i've heard that Medical Cannabis works well to stimulate the diet. If you can't get it due to it being illegal in some states, there is a pill form called Marinol. As with all medications talk to your doctor first about trying it.

Cheers,
Zolt
 
I clicked on my name, went to "edit picture", and found my photo - just can't figure out how to make it into may avatar which appears with each post! It says "File did not upload".
Click to expand...

What kind of file are you uploading -- jpeg, tif, etc. What size is the file?
Does it work if you select one of the stock avatars? Or if you link to a url created by uploading an image via imageshack (or comparable site)?
 
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