notloki Posted February 17, 2020 Share Posted February 17, 2020 Well I had a cluster of 3 seizures in 2 months recently. I hit my head at the brow line at the temple, popped the skin open; The doctor said he could of not done more cleaner and did an excellent job with the 18 stitches so scaring was minimum. I usually hit my head as I have generalized clonic-tonics. There is little warning. I have no idea as GTC's extinguish consciousness at the beginning. Another thing that happens is all muscles go to zero tension so I "fall" or crumble and hit the floor. The head is a popular place to land on. generally I hit my brow at the temple. The sharp bone of the brow cuts the skin odddnly. This has happened 3 times. The left has a fine scar following the eyelash line, totally hidden. 10 stitches to close that one. All the carnage on my face is hidden, follows eyelash or browlines. If you know me well you may notice them. Needless to say this the worst place to have an accident is Temporal lobe as i haveTemporal Lobe Epilepsy. My neurologist pointed out my accidents are concussions and seizures. Cognitive injury, which comes with a seizure also comes along with concussions more so. So time to return to normal goes from a half year for seizures to a year for concussions. I don't recognize house, friends or at least takes effort. I call my friends a wrong name often. The are lots of deficits, I loose short term memory for a while but it comes back just now it will take a year. Thank you for the mentions and e-mail, they go a long way. 1 Quote Link to comment Share on other sites More sharing options...
MiaB Posted February 17, 2020 Share Posted February 17, 2020 To say you've been through a rough time is obviously an understatement - I'm sorry to hear this, notloki. Quote Link to comment Share on other sites More sharing options...
CrazyRedhead Posted February 17, 2020 Share Posted February 17, 2020 Oh no...I'm so sorry this happened, @notloki......!! Quote Link to comment Share on other sites More sharing options...
Iceberg Posted February 18, 2020 Share Posted February 18, 2020 @notloki that’s sounds incredibly rough. Wishing you all the best in your cognitive recovery Quote Link to comment Share on other sites More sharing options...
jarn Posted February 18, 2020 Share Posted February 18, 2020 I'm sorry to hear this @notloki. I've suffered a number of concussions over the years but yours sound miserable. Take care. You probably do this, but I find notes - on a pad or phone - help a lot with stuff, because my memory isn't great. Quote Link to comment Share on other sites More sharing options...
Will Posted February 18, 2020 Share Posted February 18, 2020 I'm sorry this is happening @notloki. Take care. Quote Link to comment Share on other sites More sharing options...
Gearhead Posted February 18, 2020 Share Posted February 18, 2020 @notloki, I’m so sorry to hear about all of this. I will officially add you to my list of things to worry about. Is there any chance you could get a service dog, one who can detect seizures before they happen? Quote Link to comment Share on other sites More sharing options...
mikl_pls Posted February 19, 2020 Share Posted February 19, 2020 18 hours ago, Gearhead said: @notloki, I’m so sorry to hear about all of this. I will officially add you to my list of things to worry about. Is there any chance you could get a service dog, one who can detect seizures before they happen? I second getting a service dog if you can. I hope your recovery is thorough and quick, @notloki. Keep us posted on how you're doing when you can. Has your neurologist figured out why you're having the seizures? I know you said at one point he thought it was hypoglycemia from your diabetes meds and that you were going to switch one of the meds to a different one. Any news on what your neurologist thinks is going on? Quote Link to comment Share on other sites More sharing options...
notloki Posted February 19, 2020 Author Share Posted February 19, 2020 We have dropped a diabetes med, I am just on metformin now for diabetes. This should keep the sugar higher at night. I'm running an A1c of 1.61 or and average glucose level of 130 mg/dL. My generalist is OK with those numbers for me they indicate prediabetes. This last seizure was in the daytime and I had dosed my meds that morning. So midday hyperglycemia is unlikely, I had eaten, too. I think I simply needed more Keppra, I was on the lowest dose, a gram twice a day. He added 500 mg to both doses so daily I take 3 grams and the neurologist says 5 grams/day is not a hard limit. I have no side effects and labs are good/normal. So it has been 4-5 weeks and no seizures so it seems to work 1 Quote Link to comment Share on other sites More sharing options...
Iceberg Posted February 19, 2020 Share Posted February 19, 2020 15 minutes ago, notloki said: We have dropped a diabetes med, I am just on metformin now for diabetes. This should keep the sugar higher at night. I'm running an A1c of 1.61 or and average glucose level of 130 mg/dL. My generalist is OK with those numbers for me they indicate prediabetes. This last seizure was in the daytime and I had dosed my meds that morning. So midday hyperglycemia is unlikely, I had eaten, too. I think I simply needed more Keppra, I was on the lowest dose, a gram twice a day. He added 500 mg to both doses so daily I take 3 grams and the neurologist says 5 grams/day is not a hard limit. I have no side effects and labs are good/normal. So it has been 4-5 weeks and no seizures so it seems to work just wondering, does the neurologist ever express concern with your psych meds (like the Wellbutrin) lowering seizure threshold? Quote Link to comment Share on other sites More sharing options...
mikl_pls Posted February 19, 2020 Share Posted February 19, 2020 18 hours ago, notloki said: We have dropped a diabetes med, I am just on metformin now for diabetes. This should keep the sugar higher at night. I'm running an A1c of 1.61 or and average glucose level of 130 mg/dL. My generalist is OK with those numbers for me they indicate prediabetes. This last seizure was in the daytime and I had dosed my meds that morning. So midday hyperglycemia is unlikely, I had eaten, too. Less is good I guess for you. I'm sure 1.61 A1c was a typo, otherwise your average glucose wouldn't be 130 mg/dL. Unless there are other units for A1c I don't know about other than percentage. As long as your insulin resistance is minimized (which metformin is great for) to your body's natural insulin, and that your pancreas is still able to produce sufficient insulin (my dad, who's ravenously diabetic, has been on insulin therapy so long now, and is now using an insulin pump and has been for I don't know how long, that his pancreas no longer produces insulin, and is thusly completely insulin-dependent. His endo refers to him now as type-1 diabetes, but it's "acquired," and not congenital type-1 DM). Hopefully you'll never have to go on insulin therapy because from what I have seen, it is largely unpredictable as to what it does to your glucose levels if you don't eat with it as my dad is very bad about taking huge, heroically dosed boluses and not eating (his judgement is dissipating as his dementia worsens and may eventually need to be taken off the pump and put back on the sliding scale with my mom or me checking his glucose for him and dosing the boluses for him, and, eventually, if it gets bad enough, feed him). It can also wreak havoc on your body in many ways, one of which is that it causes extreme weight gain, especially the short-acting insulins. 18 hours ago, notloki said: I think I simply needed more Keppra, I was on the lowest dose, a gram twice a day. He added 500 mg to both doses so daily I take 3 grams and the neurologist says 5 grams/day is not a hard limit. I have no side effects and labs are good/normal. So it has been 4-5 weeks and no seizures so it seems to work I'm really hoping that the increased dose of Keppra remains side effect free and continues to work for you. I do wonder though what happened to make you need this increased dose... I guess our bodies/brains/CNS can develop a "tolerance" to anticonvulsants, just as it can to most any medicine type. I've never heard of dose exceeding 3,000 mg/day, but I'm not surprised as I've read of someone taking 1,200 mg Lamictal before for epilepsy and going through one hell of a withdrawal syndrome when it stopped working and their neurologist recommended switching to another anticonvulsant. You're in my thoughts, @notloki. Keep in touch with us on your condition. Keep in touch with me too in PM's. Quote Link to comment Share on other sites More sharing options...
notloki Posted February 20, 2020 Author Share Posted February 20, 2020 21 hours ago, Iceberg said: just wondering, does the neurologist ever express concern with your psych meds (like the Wellbutrin) lowering seizure threshold? One time he saID "You know those ADD meds promote seizures". I merely answered "Yes, I know that" and he dropped it. My psychiatrist said "Every patient I had that had seizures was taking Wellbutrin. I've taken patients off it but most of them I can get back on it." Quote Link to comment Share on other sites More sharing options...
mikl_pls Posted February 20, 2020 Share Posted February 20, 2020 7 minutes ago, notloki said: One time he saID "You know those ADD meds promote seizures". I merely answered "Yes, I know that" and he dropped it. My psychiatrist said "Every patient I had that had seizures was taking Wellbutrin. I've taken patients off it but most of them I can get back on it." Amphetamines have documented (in very old literature) anticonvulsant properties, and used to be prescribed alongside phenobarbital to enhance its efficacy and alleviate the sedation it causes back when it was virtually the only med for epilepsy. This literature has long been forgotten as amphetamines have been lumped into the methylphenidate-based stimulants as being pro-convulsant. Just like how all the MAOIs' and atypical antipsychotics' side effects have been lumped together as well as their clinical effects, despite the individual meds in their classes having their own unique side effect and clinical effect profile... Psychiatry is getting lazier and lazier and not making much progress. Quote Link to comment Share on other sites More sharing options...
Iceberg Posted February 20, 2020 Share Posted February 20, 2020 Just now, mikl_pls said: Amphetamines have documented (in very old literature) anticonvulsant properties, and used to be prescribed alongside phenobarbital to enhance its efficacy and alleviate the sedation it causes back when it was virtually the only med for epilepsy. This literature has long been forgotten as amphetamines have been lumped into the methylphenidate-based stimulants as being pro-convulsant. Just like how all the MAOIs' and atypical antipsychotics' side effects have been lumped together as well as their clinical effects, despite the individual meds in their classes having their own unique side effect and clinical effect profile... Psychiatry is getting lazier and lazier and not making much progress. So glad I finally found an “independently-thinking” pdoc Quote Link to comment Share on other sites More sharing options...
notloki Posted February 20, 2020 Author Share Posted February 20, 2020 Yes I was wrong, my A1c was 6.2: Glycohemoglobin (GHb),Total Your Value6.2 % Standard Range4.0 - 5.6 % Hemoglobin A1c values of 5.7 - 6.4% indicate an increased risk for developing diabetes mellitus. In diabetic patients, HgbA1c goals should be discussed with healthcare provider. Mean Bld Glu Estim. Your Value131 mg/dL Standard Rangemg/dL Reference range: 68-114 mg/dL Quote Link to comment Share on other sites More sharing options...
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