Hey, sorry that you're in such a crappy situation.
Do forgive me if I say anything useless because I'm not super experienced with slack, but my husband uses it at work so I know what you're talking about, and you certainly shouldn't be singled out because of it.
From some googling, it seems that you should be able to display all emojis in plain text, is this an option? See this article (under "Change your emoji display"):
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Hope it works out!
I actually asked this exact question myself a few years back! I recognized the same pattern in my auras right around my period -- it's call catamenial epilepsy. Here's some information on it.
Maybe you can take Lorazepam (or something like that), or up your dosage around your period? Not a doctor of course, but that may help. I tried several different types of birth control to balance the amount of Estrogen, but an IUD ended up being my best friend. Has helped me tremendously.
Best of luck!
Briviact is a fairly new med, just came out 2 or 3 years ago. I've been taking it for the past year. I took Keppra for over a decade and I don't notice much difference. To me it seems about the same both in terms of seizure control and side effects.
I'm not a doctor but based upon the comments on this board, Keppra is VERY hit or miss. It is either the best med ever or the worst med ever, with little in-between. I took it for years without much trouble. It caused some insomnia but that's it - no mental or emotional side effects. It eventually didn't seem to work as well and that's why my neuros switched me over to Briviact last year.
From what my neuro told me, Briviact is supposed to be a more "targeted" medication with fewer side effects. Unfortunately there's no way to know exactly how you'll respond without trying it. Keep your neuro informed if/when you try this one and call ASAP if you notice problems.
Some info from the Foundation's site and Mayo Clinic:
https://www.epilepsy.com/medications/brivaracetam
https://www.mayoclinic.org/drugs-supplements/brivaracetam-oral-route/description/drg-20311305
You will find opinions all over the map on this one. Keppra is one of the most feared medications out there because of the possibility of severe emotional effects and angry outbursts, aka "Kepprage". No doubt this is a serious problem for many people.
At the same time this medication (like any other) effects people differently. He may not experience any emotional problems from it.
As for me, I've tried 11 or 12 meds and various combos at this point. Keppra was among the best for seizure control. No emotional problems, plenty of energy, and my memory was sharp. I got the best grades of my life and passed the bar exam on my first try while on the maximum dose of Keppra (4000 mg. daily). The one problem I did experience was insomnia. This is why my neuro and I ultimately decided to switch off of it last fall.
You can read up on some of the potential side effects on Mayo Clinic's website. They are often ranked as the #1 hospital in the nation for neurology, so their pages are a valuable resource. Keep an eye on things and watch to see if any of these problems are developing. If they do, bring them up with his neurologist.
https://www.mayoclinic.org/drugs-supplements/levetiracetam-oral-route/side-effects/drg-20068010
It depends on how sensitive you are to caffeine. Green tea is the lowest in caffeine among coffee or other teas (except for decaf). It's about the same as a regular soda.
I've learned from years of experience that I can drink strong black coffee all morning without any impact. So long as I cut myself off by 2:00 PM or so, I will sleep fine and it won't provoke any seizures. I also know from experience that if I have an after-dinner coffee, it's likely to cause trouble.
Some people are so sensitive that they can't drink ANY caffeine. For others like myself, there is a limit somewhere but it's fairly high. Unfortunately there is no way to be 100% sure of how much you can tolerate. Bring it up with your neurologist and see what s/he has to say about it.
Note, caffeine is listed as one of the "less common" seizure triggers.
https://www.mayoclinic.org/drugs-supplements/caffeine-oral-route/side-effects/drg-20137844
Oh yes. I've had blackouts where I will be out wandering around and apparently even still talking to people but have zero memory of it afterwards.
Make sure to bring this up with your neuro. In the meantime you can learn more on Mayo's website:
https://www.mayoclinic.org/diseases-conditions/temporal-lobe-seizure/symptoms-causes/syc-20378214
Personally no but when i read your post I thought “woah how much orange juice did they have?” Then i did a bit of research and it’s actually a thing and overdosing is a legit problem. https://www.webmd.com/diet/news/20080819/fruit-juices-block-common-drugs
I took Trileptal for many years - first it was by itself, and later as part of a combo. It did not cause any problems with weight gain or loss, libido, memory, or any emotional problems. I remained clear-headed and able to function normally.
It did cause my blood sodium to fall quite a bit. Sounds like a good thing with the typical Western diet, right? However it is possible for it to get too low. If that happens, it can cause you to lose consciousness. It looks like a seizure but it isn't. It's just a reaction to critically low blood sodium. Ask your doctor about it - this can be tested periodically. It's more of a risk in the summer because we lose sodium through sweat. You might not have the same reaction so don't worry too much until you go over this with your doctor.
Otherwise, it typically caused some dizziness for the first 60 minutes or so after I took it. It was manageable though. Overall I would say it was one of the easier drugs to tolerate. In the end, it just didn't provide sufficient seizure control and I changed.
You can read up on the full list of possible effects here. Just be aware, these are only the possible side effects. You won't get all of these.
https://www.mayoclinic.org/drugs-supplements/oxcarbazepine-oral-route/side-effects/drg-20067615
It is not a listed side effect of Keppra, I’d still bring it up with your nuerologist to be on the safe side.
https://www.mayoclinic.org/drugs-supplements/levetiracetam-oral-route/side-effects/drg-20068010
Emotional problems are a common side effect of Keppra. It is well known to have negative effects on a person's mood and/or energy levels.
I'm not a doctor, but if you're having seizures return when you go off of medication, then my understand is you probably need to be on something. It doesn't have to be Keppra though.
There are over 20 medications available today for epilepsy. All of them have side effects but they impact people differently. The key is finding the right medication which works for YOU. The goal is effective control with tolerable side effects. Unfortunately there is no way to be 100% certain what will happen before you try something. It can be a long process and yes a little frustrating at times but hang in there. If you were able to achieve control with Keppra then it's likely you have options.
Bring it up with your neurologist. Get a second opinion if he doesn't understand you're experiencing seizure activity or if he doesn't take the side effects seriously.
Info on Keppra and its effects: https://www.mayoclinic.org/drugs-supplements/levetiracetam-oral-route/description/drg-20068010
Emotional problems are a common side effect of Keppra. You have plenty of company on this one.
There are over 20 medications available today for epilepsy. If Keppra is a problem, you can try something else. For those of us (like myself) who can't get control with medication alone, there's also two electronic implants which can help with care - the VNS and RNS/NeuroPace device.
If you keep having difficulty getting control, try to find a Level 4 Epilepsy Center. These are staffed with neurologists who specialize solely in epilepsy. They will make the most options available to you for both testing & treatment.
Epilepsy Centers: https://www.epilepsy.com/living-epilepsy/find-epilepsy-specialist/find-epilepsy-center
Info on Keppra and its effects:
https://www.mayoclinic.org/drugs-supplements/levetiracetam-oral-route/description/drg-20068010
Best android app for notes is the google one in my experience. Google keep. Basically a mini sticky note app, includes functions for checklists and such too, and syncs with your google account, so you can add/modify notes on your pc too.
https://keep.google.com/ https://play.google.com/store/apps/details?id=com.google.android.keep&hl=en
I'm reading one now called Brainstorm: Detective Stories From the World of Neurology Its a great read and I highly recommend it... Oh, and there's a good chance you can download it as an ebook from the public library...
I'm not sure if you're aware, but one of the most powerful persons in the western world had a son with Ohtahara treatments, iirc.
http://news.bbc.co.uk/2/hi/uk_politics/7909562.stm
If you're looking for treatments from the era, a good read would be something like Pellock's Pediatric Epilepsy (2nd edition is from 2001). I'm almost certain in has sections on Ohtahara.
https://www.amazon.com/Pediatric-Epilepsy-Diagnosis-published-Hardcover/dp/B008TE85K6 There's a used copy on Amazon for $1.80.
I feel like I shouldn't have much to say but I want to say something because I remember reading your first post and being so scared for you while reading it. Any seizure is a horrific and powerless situation, and on top of that to have to deal with police when coming out of it must be bewildering. But it made me remember that it's up to us to raise the urgency and awareness it takes to make training mandatory for police (and to a lesser degree first responders) to recognize the signs of epilepsy and mental illnesses. Otherwise we're just accepting the status quo. I live in the US and our situation with police relations isn't exactly the best right now, but it sounds like the UK has much room for improvement as well. I hope these experiences motivate you to find focus for what you want to achieve in life. If you like to read, I'd highly recommend Victor Frankel's "Man's Search for Meaning." It sounds like a dry philosophy course but it's much more comforting than the title implies. Feel free to send me a message if you ever need to talk or vent.
It is not uncommon for seizures to remain uncontrolled on medication. Control levels achieved with medication vary from person to person. She may need to go through a variety of medications/combinations to find the one that works for her. There is a possibility that it cannot be controlled with medication. That was the case for me, and I am now med-free and working towards control with lifestyle changes.
To start, I would suggest finding a reputable neurologist, or even better, an epileptologist at a clinic that specializes in epilepsy. We have a couple here in MN - MINCEP and Minnesota Epilepsy Group. It sounds like your girlfriend is currently just being treated by general care doctors. Epilepsy is a complex disorder, and is best treated by a specialist.
In addition to finding a specialist, I would suggest that she start cutting some common triggers out of her diet (alcohol and caffeine), make sure she is getting plenty of sleep, reduce stress levels, and start keeping a seizure diary. The diary will be particularly helpful for the specialist and can help pinpoint her seizure triggers.
Finally, if she is experiencing anxiety issues from the epilepsy, I highly recommend she read the book "Peace is Every Step" by Thich Nhat Hanh. This book was suggested by an epileptologist of mine, and helped me greatly.
It's scary and many people have come here with the same story. You are not alone! Keep this in mind... 70% of people with epilepsy are seizure free once they get on the right medication. If you are epileptic, and you might be, things will change, but there is a very good chance you're going to be fine! People with epilepsy drive every day once they're seizures are controlled... Until further notice, you need to take some precautions listed here. You can do this... circle the wagons! Find a good neurologist! Keep a good seizure journal... Keep us posted!
If you both have an Android phone, Google Latitude can do the finding part, and you could use one of the many quick-SMS widgets to send him a text with a single button press.
I'm not a doctor or nurse and even if I was, I could not give you medical advice online.
That said, I've taken Onfi for a few years. I did not completely eliminate alcohol but I drink very little. It's one or two drinks per week. My neuro has my blood tested every 6 months and so far, no problems. I'm not going to press my luck though.
Onfi CAN cause liver damage and alcohol only intensifies this effect. The more you drink, the higher the risk becomes. Exactly what is "safe" for you...I don't know. Bring this up with your neurologist and ask about getting blood tested.
The good side of Onfi is I barely notice any mental side effects. It makes me a little sleepy but it's manageable. My memory seems unchanged.
You can read up on some details on Mayo's site, but be sure to go over it with your neuro.
https://www.mayoclinic.org/drugs-supplements/clobazam-oral-route/description/drg-20075333
It may be the meds causing this. If you didn't notice changes in his mood or behavior before he started Keppra, then that seems likely.
Personally I took Keppra for years and I remained emotionally stable. The only side effect was insomnia. But, that's just ME so don't assume it will be the same for him. Kepprage and/or other emotional effects are well known.
I've had similar experiences from other medications. Topamax was probably the worst. I was emotionally just flatlined on it. I was honestly a different person on that stuff. I didn't even realize how much it was impacting me until I switched off it. No doubt it put some strain on my relationship with my wife...but we got through it.
You might want to try contacting one of his family members or close friends. Let them try to help him recognize this could be his meds causing the despair he's feeling.
Info on Keppra and some of it's side effects can be found on these sites.
https://www.mayoclinic.org/drugs-supplements/levetiracetam-oral-route/side-effects/drg-20068010
The definition of epilepsy is still developing. I'm not a doctor but from what I know, the general rule is if you've had at least 2 unprovoked seizures (e.g., not an allergic reaction or some other medical problem) then you are typically found epileptic.
Yes, dizziness and vertigo can be signs of seizures. Seizures can vary tremendously from one person to another, depending on the areas of the brain involved.
Getting to a neuro and having the EEG test done is a good start. Be aware though, the EEG was invented in 1924. It is still the standard test most neuros will use but it is imperfect to be sure. It is very possible to be epileptic yet still have a normal EEG. If yours comes back normal, just be aware there are more tests available today. Don't give up hope.
https://www.epilepsy.com/learn/about-epilepsy-basics
https://www.mayoclinic.org/diseases-conditions/epilepsy/symptoms-causes/syc-20350093
It is chemically similar to Keppra, but supposed to be a more "targeted" medication, for want of a better way to put it. More potent with less severe side effects as I understand it.
I switched from Keppra to Briviact last fall and currently take a four-med combo. It seems to be about the same FOR ME. No guarantee it would be the same for you as well.
You can find more info on the Mayo Clinic's site, as they are often ranked #1 or #2 in the nation for neurology. You can see the FDA's sheet online too.
https://www.mayoclinic.org/drugs-supplements/brivaracetam-oral-route/description/drg-20311305
https://www.accessdata.fda.gov/drugsatfda_docs/label/2017/205836s003,205837s003,205838s002lbl.pdf
I'm not a doctor of any kind but I know there is evidence that left untreated, seizures will get worse over time.
No doubt Depakene/Depakote has the potential for rough side effects. That said...I took the oldest med out there from ages 4-12 (phenobarbital). Doctors warned my parents about the possibility of a huge range of side effects and behavioral problems - but that didn't happen. It kept me seizure-free as a child and I was a good student, basically a B+ average through those years and beyond. Maybe I was somewhat of an introvert, but who knows how much of that was medication and how much was just ME. I still had friends and still had plenty of interests and activities.
Learn as much as you can about the medication and keep track of both seizures and possible side effects. If it doesn't work or causes problems, bring it up with your neurologist. There are lots of options out there today so if this one doesn't work you will have choices.
See the Mayo Clinic's site for full details on this med. They are often ranked #1 in the nation for neurology so their pages can be a good resource.
https://www.mayoclinic.org/drugs-supplements/valproic-acid-oral-route/description/drg-20072931
Haven't tried this one. You can read details about it on Mayo Clinic's site. They are often ranked #1 or #2 in the nation for neurology so their pages can be a valuable resource.
Their opening page indicates that it is sort of a "last resort". They said it's typically used when other meds have failed.
If you haven't already, it might be worth seeking out an Epilepsy Center. These are staffed with neuros who specialize solely in epilepsy. There's more tests beyond the EEG and more treatments beyond only medication (VNS, RNS, DBS implants). Epilepsy can't be cured yet so it's worth seeking out the best care available.
https://www.mayoclinic.org/drugs-supplements/felbamate-oral-route/description/drg-20063811
https://www.epilepsy.com/living-epilepsy/find-epilepsy-specialist/find-epilepsy-center
I'm not a doctor - just going from what my epileptologist told me. Caffeine has a half-life of 5 to 6 hours. Drink it in the morning, and it will mostly be out of your system by the time you go to bed. Drink it after dinner, and it's likely to interfere with your normal sleep cycles. That won't guarantee a seizure every time because we're all different. It just raises the chance.
I did the VEEG twice. The first time I was completely off meds and it got to the 7th day. I used coffee to force myself to stay awake for 24 hours straight. BAM! Major grand mal. Unfortunately it was so severe that my EEG was just a mess and did not locate any focal points.
The second time, I just reduced meds by half. Took 8 or 9 days, but eventually a complex partial hit. I was still awake and talking with my epileptologist right when it happened. It was combined with SPECT testing and doctors were able to figure out what's happening.
Note too - the Mayo Clinic is often ranked #1 in the nation for neurology. Their pages show seizures are a "Less Common" side effect of caffeine.
https://www.mayoclinic.org/drugs-supplements/caffeine-oral-route/side-effects/drg-20137844
Personally I took this med for many years without an impact on memory.
That said, all of us are different and memory problems are a known to be a possible side effect of Keppra. I've had memory problems from other medications - so no doubt this can occur. Call your neuro and seek out other options.
https://www.mayoclinic.org/drugs-supplements/levetiracetam-oral-route/side-effects/drg-20068010
If he's used LSD in the past, it can be hard to say for certain. I had friends who used it during college (graduated 1996) and they experienced hallucinations occasionally. None of them were epileptic. I never tried it so I can't compare.
That said, I know seizures CAN present themselves as hallucinations. My first ones started in a similar way at about age 19 or 20. I didn't recognize them as seizures at this point. Just...extremely bizarre feelings where I'd drift off to a dreamlike state where I suddenly felt and knew everything around me. Almost a God-like feeling (and I'm not a religious person in general). Then after 30-60 seconds they'd suddenly stop with no after effects. I never recognized these as seizures until I suddenly collapsed in a grand mal at age 24.
If your friend is already diagnosed as epileptic then I'd suggest he bring this up with his neurologist ASAP. I'm not a doctor but from what mine told me, left untreated seizures are likely to grow worse over time - and that's exactly what happened in my case.
If he can't get success with his neurologist, seek out an Epilepsy Center. These neuros specialize solely in epilepsy. There is more testing beyond the EEG and more treatments beyond medication, but often only these Centers will make it available.
Good luck to both of you.
https://www.epilepsy.com/living-epilepsy/find-epilepsy-specialist/find-epilepsy-center
https://www.mayoclinic.org/diseases-conditions/temporal-lobe-seizure/symptoms-causes/syc-20378214
You can read up on the full list of potential side effects on Mayo's site. They are often ranked as the #1 hospital in the nation for neurology so their pages are a great resource.
You won't get all of these effects. It varies from person to person. These are just a good list of things to watch for:
https://www.mayoclinic.org/drugs-supplements/valproic-acid-oral-route/side-effects/drg-20072931
Contact your neuro right away. Keppra can cause these side effects for some people. I was one of the lucky ones - it did not happen for me when I took it, but it is well known that severe depression and suicidal thoughts are possible.
Again, contact your neuro's office today and let him/her know you're having these problems. There's over 20 medications for epilepsy available today. You should be able to find something which works better for you.
https://www.mayoclinic.org/drugs-supplements/levetiracetam-oral-route/side-effects/drg-20068010
Mayo Clinic is often listed as the #1 hospital in the nation for neurology. Their pages show shaking and shivering are both common side effects. Shaking in the arms, legs, hands, or feet specifically are shown as less common effects.
I'd bring this up with your neuro since it appears this could be a side effect, especially if it just started after you began the medication.
https://www.mayoclinic.org/drugs-supplements/levetiracetam-oral-route/side-effects/drg-20068010
Mayo Clinic shows Trileptal is in "Category C" for pregnancy. This means the safety of this med is still fairly uncertain. To quote from their page, "Animal studies have shown an adverse effect and there are no adequate studies in pregnant women OR no animal studies have been conducted and there are no adequate studies in pregnant women."
I'd speak with your doctors about it. Some meds are known to be safe, while others are not (or are inconclusive, like Trileptal). It's frustrating as Trileptal has been around over 20 years now. You'd think these studies should be complete at this point.
https://www.mayoclinic.org/drugs-supplements/oxcarbazepine-oral-route/before-using/drg-20067615
Mayo Clinic is often listed as the #1 or #2 hospital in the nation for neurology. Their pages show a variety of mental effects or personality changes are possible from Depakote.
I'm not a doctor but just IMHO, get a second opinion, preferably from a Level 4 epilepsy center. These are staffed with neuros who specialize solely in epilepsy. They will make more treatments available beyond just medication and are more aware of the variety of side effects these meds can cause. Generally, just a higher standard of care and since epilepsy is a lifelong condition with no true cure yet, it's worth seeking it out.
https://www.mayoclinic.org/drugs-supplements/valproic-acid-oral-route/side-effects/drg-20072931
https://www.epilepsy.com/living-epilepsy/find-epilepsy-specialist/find-epilepsy-center
It is very possible to have a normal MRI and normal EEG yet still be epileptic. According to the Mayo Clinic, a nationwide leader in neurology, epilepsy has no identifiable cause for about half of people with epilepsy. It is unfortunate, but this is the limits of medical technology and scientific understanding today.
That said, don't give up hope. Often seizures can still be effectively treated even it the cause of them remains unknown.
https://www.mayoclinic.org/diseases-conditions/epilepsy/symptoms-causes/syc-20350093
I am not a doctor! My first thought was Abdominal Epilepsy it is very rare only 36 cases in the last 40 years. Then I thought Syncope jumping up to go... puts a lot of pressure on your system. My son passed out in the bathroom once from jumping up to quickly. Either way you have to get it checked out... Good Luck Keep us posted..
I've switched from real keppra to generic without a problem. Brand name and generic meds are both highly regulated so I don't think you have any reason to worry, though I understand the natural inclination to do so.
"The Food and Drug Administration requires that over-the-counter and prescription generic drugs have exactly the same active ingredients in the same strength as the brands they copy. It also requires that they have the same purity and stability, come in the same form—for example, tablet, patch, or liquid—and be administered the same way (for example, swallowed as a pill or given as an injection). In addition, manufacturers of a generic must demonstrate that the drug is “bioequivalent” to its corresponding brand by showing that it delivers the same amount of active ingredients into a person’s bloodstream in the same time as the original brand. A 2009 analysis of 2,070 bioequivalence studies found that the average difference in absorption—using two measures—between a generic and its branded prototype was about 4 percent, the same variation that is found between two batches of the same brand-name drug. "
Source - http://www.consumerreports.org/cro/2012/08/are-generic-drugs-safe/index.htm
Keppra is known for causing emotional side effects - depression, anger, and wild mood swings. It is sometimes called "Kepprage". I took it for years without this problem but I know it is a risk & it is one my neuros checked on a regular basis with me. Keppra caused insomnia for me though and upon my neuro's advice I recently switched off of it.
There are over 20 medications for epilepsy today. If his neurologist won't listen to these concerns, try to find an Epilepsy Center. These are staffed with neuros who specialize solely in epilepsy and it is a higher standard of care.
Good luck to both of you.
Info on Keppra's side effects: https://www.mayoclinic.org/drugs-supplements/levetiracetam-oral-route/side-effects/drg-20068010
Epilepsy Centers: https://www.epilepsy.com/living-epilepsy/find-epilepsy-specialist/find-epilepsy-center
I took it once briefly and it did not work for me. Side effects weren't a problem, but it seemed to actually make my seizures worse. Bring up your concerns with your neuro again if things don't straighten out. I'm not a doctor but I know it is true there can be an "adjustment period" anytime we change medications. Still have to draw the line somewhere.
Some info from the Mayo Clinic: https://www.mayoclinic.org/drugs-supplements/zonisamide-oral-route/description/drg-20066787
Keppra varies dramatically from person to person.
Some people experience rage, depression, and wild mood swings with it. I took it for years and never had this experience. It did cause insomnia and I recently ended it solely due to that.
The big plus of it for me was I've tried over 10 medications at this point, plus various combos. Keppra gave very good seizure control. One of the best so far. Also, it did not interfere with my life for the most part. I went through law school while on a dose of 2,000 mg. twice per day and I finished with honors. Still had time for an active social life too.
For some people this is a great medication. For others it is horrible. Unfortunately there is no way to know for sure how you will react. Take it day by day, and call your doctor if you have problems.
Some info from the Mayo Clinic on this one: https://www.mayoclinic.org/drugs-supplements/levetiracetam-oral-route/description/drg-20068010
Sorry about your friend.
I think this is the kind of issues you need to discuss with (various) doctors.
Depending on where your friend lives, I heard the Mayo Clinic has a great neurology department.
Best of luck to you :)
I took it for years and it did not impact my mood. I don't have anxiety though - that is a condition of its own.
That said, feelings of sadness, discouragement, or loss of interest or pleasure ARE known side effects for this medication. It doesn't happen to everyone but it can happen.
Ask your doctor. It may be worth considering a different medication if these side effects are a real problem for you.
Some info: https://www.mayoclinic.org/drugs-supplements/carbamazepine-oral-route/side-effects/drg-20062739
I've never tried Lamictal, but Mayo Clinic's site lists flu-like symptoms, stomach pain, and a "general feeling of illness" as possible side effects.
https://www.mayoclinic.org/drugs-supplements/lamotrigine-oral-route/side-effects/drg-20067449
I took Dilantin at one time but turned out to be allergic.
Be aware, it is the second-oldest epilepsy medication out there. If you are on it for the long term it carries some nasty risks, including tooth decay, gum disease, and osteoporosis. I'm not a doctor but I'd recommend trying to use something else (if it is available for you). There's over 20 meds for epilepsy today so you should have options.
Info on Dilantin: https://www.mayoclinic.org/drugs-supplements/phenytoin-oral-route/description/drg-20072875
Some basics on epilepsy: https://www.epilepsy.com/learn
I'm not a doctor but as I understand it frontal lobes control higher reasoning and judgment (primarily). Strange behavior (includign unexplained laughter) and memory loss are common symptoms.
Be aware it is possible to have a normal EEG and normal MRI but still be epileptic. It happens to a lot of people. There are other tests which can be done, but it may require getting to an Epilepsy Center (preferably Level 4) to access them.
Some info:
https://www.mayoclinic.org/diseases-conditions/frontal-lobe-seizures/symptoms-causes/syc-20353958
https://www.epilepsy.com/living-epilepsy/find-epilepsy-specialist/find-epilepsy-center
Here's a couple of things to think about:
"It's Illegal" https://www.webmd.com/healthy-aging/features/letter-and-spirit-of-drug-import-laws#1 .
Ordering from the internet may be risky, especially from overseas. Do you know if the drug has been tempered with? I don't, and neither do you.
One way to lower the cost of drugs, for brand name drugs, is to call up the drug manufacture and ask them for a discount. They do offer discounts if you are low income and can provide proof.
Another method, related to point 1 above, is to take a trip down to Mexico (or Thailand, where I live). According to https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1003314/ , a lot of prescription drugs in the USA are sold over the counter in Mexico. In Thailand, I believe most anti-epileptic drugs are also over the counter. Lamictal, brand name, is about $30 for a box of 30 100mg pills. In America, that would be about $250. I'm on Depakote, 30 pills of 500mg (ER, like yours, I think) is $15.
Depending on where you live, it might be worth it to get a round trip ticket to Thailand for $400, see a doctor here to prescribe you a large amount of Depakote (another $15), and buy as much as you can. You may be able to do something similar for Mexico as well.
Ad-Rock appears to have weighed in on this topic as well:
> Well I'm an epileptic, a skept-a-cleptic, check it
who nevertheless has
> got the skills to pay the bills
http://genius.com/984784/Beastie-boys-the-skills-to-pay-the-bills/Well-im-an-epileptic
So here is one group that I have really appreciated what the group has been able to do for me personally .... worth a look for others as well.
SHARE --- Support, Hangout, And Relax (with others with) Epilepsy
Click HERE to view and add your story to the SHARE member spreadsheet - a chance to learn about each other, connect, and make friends.
SHARE has 198 members.
Meeting date/time: Wednesday November 25th, 7-9pm
Meeting link: https://meet.google.com/syo-vfqw-fru
Topic: Your advice/suggestions on living with epilepsy
Description: Let’s discuss advice/suggestions on how SHARE members have better learned to live with epilepsy. Physical, mental and psychological. This is not about doctor advice like medicine or surgery…but more about lifestyle and attitude. Small helpers, big helpers, tips. Things you’ve picked up over time that have helped you.
I'd recommend reading their book. Drs. Eric Kossof and Mackenzie Cervenka from a Johns Hopkins wrote it. It's their entire program:
The Ketogenic and Modified Atkins Diets: Treatments for Epilepsy and Other Disorders https://www.amazon.com/dp/1936303949/ref=cm_sw_r_cp_api_glt_fabc_HTWW10NDSVBGD2V9A0VQ
Basic daily AM/PM pill sorter, reminders on my phone and computer with alarms that go off at 8 AM and 8 PM. Without all that I'd forget all the time.
You sure can! There are a number of options to choose from. But I can tell you that I've purchased other supplements from this brand that have been good quality: https://smile.amazon.com/Superior-Labs-Supplement-Vegetable-Cardiovascular/dp/B00LGGXT5K/
I really recommend the book Mind Over Mood. It's essentially a therapy course in a book. I have anxiety and depression and I found it really useful.
Just asked my husband for some information for you! See below.
In a nutshell, they need to start by learning about HTML, then CSS, then JavaScript. There are loads of great online resources and they should start by doing some hands-on ones that get you working on simple projects.
I would start here: https://www.codecademy.com/learn/learn-html I also recommend the 'Head First' books, like this one: https://www.amazon.co.uk/dp/144934013X/ref=cm_sw_em_r_mt_dp_3Z4JS76XQGCFFEHA45HQ?_encoding=UTF8&psc=1
these things have saved my soul. They're god awful fashion-wise, but when I worked under fluorescent lights they made it tolerable. If you want to find your own, the lenses have to be polarized, and I recommend the over-glasses style cause they block out most of the light that doesn't go through the lens.
I use this app to keep track of my medication. I find it better than an alarm as it allows me to keep track of if I have actually taken it. I found I would snooze an alarm as I wasn't near my meds or something and then forget. The app will show a notification on my phone even after the alarms have expired (e.g. after 10 snoozes).
It also has a feature where someone such as yourself can see if your sister has taken the meds. I haven't tried that myself.
https://play.google.com/store/apps/details?id=com.medisafe.android.client they probably have an iPhone version as well.
I hope that is helpful.
Thank you, this is exactly what I needed. I am a beginner meditator and yogi. Currently I'm reading "Mindfulness in Plain English" by Bhante Gunaratana and it has been very helpful in my practice of meditation so far. I cannot stand to disassociate right now, so I need to stay locked into reality and I know meditation is one of the keys to staying focused. My husband is especially good at keeping an eye on my moods after a seizure, because he knows how depressed I can become after one.
Thanks again for the positive thoughts, they are definitely appreciated <3
Depends on how the alert system works. If it's an automated thing that doesn't require employee intervention, resources on their servers, etc., then yeah, BS, but if that's the case there could be a non-subscription alternative somewhere.
As far as I can tell from the website, it detects seizures with an accelerometer, gyroscope, electrodermal activity sensor (sweat monitor?), and peripheral temperature sensor. As long as any smartwatch has those sensors and the right software, it can do the same. I'm having trouble finding which sensors are in smartwatches but I would not be surprised to find all of them standard in every Android/iOS smartwatch. As for the software for these non-specialized watches, it's at least in progress, like this app which already has a manual seizure alert and is working on automated seizure detection. Maybe someone's made something for iOS already.
If I were you, I'd look briefly into the software that's currently available to make sure there isn't a non-subscription alternative available and if I didn't find anything particularly good, buy a year with your current guys and look into it again when it's time to renew.
Lamotrigine is a great drug for some people, not for others. One question is, will it work for you if you are able to get to a proper dose? Even if you get to that first recommended dose you may need repeated escalations to get the optimal dosage. It's a long journey. And are you comfortable hanging in there through the process to see if it'll work for you?
Whatever you choose is reasonable. I have been on Lamotrigine for >25 years and consider it my BFF but what you have been through recently sounds terrible!
If you decide to stick with the Lamotrigine a bit longer and I were you, I'd have my Calm meditation app ready to go, I'd be journaling every day, and I'd have an appointment with my therapist every week. I know these things are good for my mental health but everyone is different.
This is not specific to epilepsy, but my therapist recommended it for me and it's good - anyone can do it at home - workbook You will get through this!
Lifestyle is extremely unlikely to control the seizures. The only lifestyle based treatment for epilepsy that I am aware of is the ketogenic diet. I don't know much about it but it sounds super extreme. You could ask your neuro if it could be an option for you. There are no supplements that are indicated for epilepsy to my knowledge. Avoiding triggers can reduce risk. Common ones are alcohol consumption, lack of sleep, and stress, but everyone is different.
Good for you for making changes. I hear a lot of negative self talk in your post. Pat yourself on the back for the work you are doing. A few suggestions:
-Expose yourself to early morning light. Get that circadian rhythm on track which is helpful for mood and sleep. Either take a walk when the sun in low or at least stand in front of a window.
-Consider therapy. You mention social and physical isolation and stress, and arrested development. A therapist is a compassionate and objective person who can help us move past some of our obstacles.
-Don't be afraid to try meds if they are recommended. My life is so much improved by the medications I'm on, despite initial side effects and some trial and error.
Best of luck to you!
Idk about you guys but I’m a little confused.
I just linked another study where they have AI that is 99.6% accurate of predicting a seizure up to an hour before happening...wish they updated on this or some news station followed up on it.
hey. <3 My family loving refers to my post ictal stage as "dealing with a drunken toddler." As far as I know I've never hit anyone or thrown things at people, but I've become pretty combative as they've tried to help me get dressed or undressed as necessary, and said some not-nice things. I read a book several years ago you might like just to feel like you're not alone. It's self published, and unless he's had someone go through it since I read it, it could use a good editor, but it's a good read: Beyond My Control. I connected with him on social media for a few years after I read it. He's a good guy.
To OP's sample
Screens used to bother me as I graphic design a lot and am also a Networking & Security student. I used to use to f.lux its a little piece of the software. the .exe is literally 650kb. You can change the "warmthness" of your screen or the "blue". There's also a timed mode, so once night time comes the light gets dimmer and more warm, but if your problem is lights, you'd want it warm 24 hours.
I don't use it anymore as screens don't bother me anymore. My epilepsy changed. I went two years seizure free without medication. They came back but different types. I had absence seizures before. But now auras and grand mals. :/
Personally, I'm not sure. That's something you should probably ask your family doctor or neuro. According to webMD, adderall's general purposes are for sleep disorders and ADHD. It doesn't seem to have any treatment purposes for epilepsy.
Glad to help.
Last winter/spring my psychiatrist suggested I use the "Verilux HappyLight", which mimics the light you'd see in the summer and trigger the things in your brain you'd get from that summer sun. Might be time to get that out again for me.
So cooking meals in the microwave oven is a good option, a food chopper box (link below) and food that is precooked like ready cooked meat and stuff is good. Delivery boxes are good too but they can get expensive. I would say microwave ovens and food chopper boxes are my favourites as I can cook food in the microwave with little risk if I were to have a seizure as I have it on short bursts on my mircowave so if I have a seizure my food doesn't burn, boil over, etc. Also air fryers are good and slow cookers.
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Ouch! I got this for my husband to put in his hats after he took a header on cement during a seizure.
That is definitely difficult, and of course you probably don’t want to say anything about the food.
I assume you’ve tried different skin care items?
This soap is what really helped my son during his teen years. They kept treating him for regular acne when what he really had was acne rosacea. Once they figured that out, the dermatologist recommended this soap and his skin healed:
I have one of these inside my medicine cabinet (not in the bathroom bc moisture can effect meds)
It helps to not forget. Plus I keep my meds in a weekly case so if I'm unsure I can check the day and see if I forgot. Haven't forgotten my meds in a couple years now.
I’ve had intertractable tle since I was a kid (I’m 37 now).
This is the go to book on keto diets for epilepsy. I couldn’t do it, it was just too complicated (you have to weigh out all of the ingredients, etc) but they released a newer edition that i haven’t seen that is supposed to be a little less strict on what you can eat and complicated as far as weighing everything . Not sure if it’s something that you would necessarily want to do (I didn’t) but I still felt like it had a lot of useful information.
As far as fasting I didn’t even really intend to do it but I don’t typically eat breakfast and I changed jobs to one where it was usually hard to find time for a lunch break. I was a little overweight at the time and noticed that it was helping me lose weight without even trying, so I just stuck with it and it’s worked pretty well, I’m in way better shape. I’ve talked to my doctor about it, he didn’t think it was a problem.
I am looking at life vests and I think I am just going to carry one of these as well. https://www.amazon.com/Inflatable-Belt-Pack-Life-Jacket/dp/B07BYSJFJ4 that way if anyone needs additional help staying up right in the water this can be inflated and put around their neck even if they already have a vest.
The only somewhat positive thing to keep in mind is that the tongue is incredibly tough and will be pain free again in like 14 days. At least, that's how it's always been for me. The entire tissue healing process takes like a month, but at least your tongue will feel better soon.
Check this out btw, a woman is developing this tongue brace type of thing, aka the "PATI Device", to Protect Against Tongue Injury during seizures. You're supposed to pop it in your mouth if you feel an aura happening, and it should be released to the public within the next year or so (depending on possible FDA approval delays). Cannot WAIT to get a few of them to keep around me at all times.
As a DIY alternative while longing for the PATI Device during the past couple months, I've been using a rubber football mouth/lip guard with a wide built-in airflow channel, and it totally saved my tongue during 1 of the 3 seizures that I've been able to use it for. Well worth the price, even if it never works again. Recovering from that seizure with just like 3 days of muscle pain rather than 2 whole weeks of excruciating pain and an inability to speak or eat, and the fact that it could help again in the future, definitely worth the price.
i wish you the best! getting everything sorted can be so difficult. definitely not alone in the tree thing! when i was first diagnosed my parents bought this screen to put on the car windows to help with it, and i think it helped but it made me motion sick so i had to stop using them. i thought i would bring it up in case it would be helpful for you though! it was something like this
I got this. Lyndong 4 Pack Epilepsy Silicone... https://www.amazon.com/dp/B07HSY2GD5?ref=ppx_pop_mob_ap_share Don't get the ones that aren't stamped because the paint tends to wear out much faster.
The reason i got them was to avoid getting narcanned by an overzealous first responder.
So nerdy, but I have the nose spray and the package kept getting destroyed in my pocket/purse. These are perfectly sized for Nayzilam. https://www.amazon.com/dp/B07C3NL6XC/ref=cm_sw_r_cp_api_i_YPJRHCJV3GRNVQQY2VNG?_encoding=UTF8&psc=1 and these stickers fit well https://www.amazon.com/dp/B01LR3LQYW/ref=cm_sw_r_cp_api_i_EK9QXZYKBG2S0JTNZXH5?_encoding=UTF8&psc=1 Just makes it easier to throw in my bag.
Here are some alternative ways to track your meds which work well for me.
These caps help with the... Did I just take them? question https://www.amazon.com/dp/B00HJD7RGQ
I got one of these and stuck it inside my kitchen cabinet where I keep my meds. https://www.amazon.com/Did-You-Take-Your-Pills/dp/B074VFBSG2
It helps me remember if I took them. I also have a pill box.
Remember to *not* keep meds in your bathroom 'medicine' cabinet- the humidity can degrade them.
I'm a 32F with TLE and my experiences have been so much like yours lately. I actually walked into my bedroom a few times this weekend looking to check on my 15yo dog, but I had to put her down a few weeks ago. It was so depressing I had to sit down. I can't tell if it's because it was such a habit before? And idk where some of my seizures have come from lately, I had been relatively stable for almost 3 months and then my shit brain hit the fan recently. So then I tell my friends and coworkers that I recently had a seizure and everyone gets all uncomfortable and then have a pity party.
Last week people looked a little different? I don't even know how to explain it without sounding like a nut, but everyone was the same... but different? I studied bones, skulls are my favorite, zygomatic arches make me happy because of how much they say about someone... but why does everyone seem different all of a sudden? Am I paying attention to new traits? Like... I know what my coworkers, family and friends look like. It is so strange.
Doing puzzles and those Diamond Art things have helped my concentration. I know it's lame, but the colors and final product is fun. I honestly don't even keep many of the completed Diamond Art things but it's a nice way to zen out and concentrate. This puzzle and this diamond art are some of my favorites.
Here are some alternative ways to track your meds which work well for me.
These caps help with the... Did I just take them? question https://www.amazon.com/dp/B00HJD7RGQ
Along with this Pill container, We have two alarms set for the evening dose! One on the iPhone that rings until she turns it off and one on the echo dot. Why a dot? It always works and it just says "TIME" 15 mins after the other alarm rings. Added bonus... the dot reminds us doctor appointments too...
I’ve got this one recently, it’s so useful, the days are all separate so if I’m going away I can sort all the tablets out beforehand.
Plus the individual day containers aren’t too big, some of these pill organisers are massive.
Sorting everything out once a week does make things easier.
I'm guessing this is the kind of thing they're referring to, which you can buy online too! Or maybe at a local pet store. https://www.chewy.com/tuff-mutt-hands-free-bungee-dog-leash/dp/213670?utm_source=google-product&utm_medium=organic&utm_campaign=%7Bcampaignid%7D&utm_content=Tuff%20Mutt&utm_term=%7Bkeyword%7D
How to get a cat back home. Go buy a cat trap Our cat has got out 3 times. Once he was gone 10 weeks. They travel in bigger circles and come to your house every evening. He's hunting for food. So put some wet and dry food in the trap and cover it with an old blanket (leave the door open uncovered) put it in your yard. You can go a step further and put a YI Camera outside the cage so you can check it without going outside. My cat was coming 2 or 3 days after 10 weeks. They really do stick close to home! Also, put up a few reward posters. We offered $100 and every kid on the block was looking. Stop worrying your cat will be home soon!
ORSDA 5 Meal Automatic Cat Feeder, Timed Pet Feeder for Dry and Wet Food, Programmable Dog Food Dispenser with Portion Control,Voice Recorder, Dual Power Supply for Cats and Small Medium Dogs https://www.amazon.com/dp/B08D8CM3TJ/ref=cm_sw_r_cp_api_glt_i_00DZHT9Y6NM6AJ19XEHR?_encoding=UTF8&psc=1
Looks like it, yes!
Please talk to your doctor! If you currently take pills you might be able to switch your prescription to something easier to keep down/absorb from the stomach faster eg granules that mix with water or a syrup style medicine.
Perhaps consider something to help you stay sleeping on your side while this is resolved, eg this maternity pillow
But again, discuss this with your doctor rather than take advice from me, a rando on the internet.
Sending best wishes! Talk to your doctor asap!
It is rare for someone to be as open as me. As far as I'm concerned it is part of what makes me me, and I'm an open book. Literally lol https://www.amazon.com/ROAD-SOBRIETY-Personal-Experience/dp/B08N1KGNTK
But it sounds like you genuinely care and that is the best thing you can do for him. Care, LISTEN when he opens up, and do what you can to support him
My mom was there for me through my journey, still is. I'm 37 and my favorite tattoo I have is my mom tattoo. I actually got it when I was 35 :)
I don't know if this will help you, but take a look at https://justgetflux.com/
I'm a software developer and spend most of my day in front of a computer. I used to have horrible migraines that lasted for days and were caused by the screen brightness and contrast between the screen and the natural light. What flux does is adjust this contrast according to the time on your computer. Quote from flux's website:
"f.lux fixes this: it makes the color of your computer's display adapt to the time of day, warm at night and like sunlight during the day"
You should also make sure that the brightness on your son's computer is set to minimum. It might be inconvenient if you're a designer or an illustrator, but it does help a lot.
This is a fairly new med as I understand it. You can find details on Mayo Clinic's site. They are often ranked as the #1 or #2 hospital in the nation for neurology so their pages are valuable.
You can also google up the FDA sheet for this or any other prescription medication, but Mayo's site is probably easier to read.
Bring up any questions with your neurologist.
https://www.mayoclinic.org/drugs-supplements/eslicarbazepine-oral-route/description/drg-20084844
https://www.accessdata.fda.gov/drugsatfda_docs/label/2013/022416s000lbl.pdf
LiveFine Automatic Pill Dispenser... https://www.amazon.com/dp/B07VDG4Y1J?ref=ppx_pop_mob_ap_share
I use this for my kids. The alarm doesn't stop until you turn it over to dispense the pill. They take meds AM and PM, so it's loaded up for 2 weeks at a time.
I no longer have to nag them. It's great!
I’m on my second year of being full keto. When I was diagnosed 4 years ago I was having several partial seizures a week and they progressed into a few grand mals & loss of consciousnesses seizures. Was first put on trileptal and had a few grand mals (I swear that shit made my seizures worse). Was put on keppra and made me unbearable around my loved ones. Finally tried keto monotherapy (no drugs). I can say it reduced my frequency and intensity insanely well. I have a partial seizure maybe once every few months. I’m on briviact now along with the diet, as the diet didn’t completely stop all my seizures.
I don’t find the diet difficult. You get to eat all the best foods: steak, butter, bacon, mayonnaise, barbecue, cheese, ect. I try to keep my diet somewhat clean by reducing hydrogenated oils, eating organic veggies (the ones I do eat), pastured eggs, grass fed beef, reducing processed foods, ect. I keep my carbs around 20g per day which is not a lot. Once you kick sugar, it’s really not that difficult. I check my ketone levels daily by blood (Keto-Mojo) or breath (Biosense). I usually only eat one meal a day and try to fast every Monday, this helps keep ketones boosted. I also incorporate MCT oil into my diet to assist with ketone levels.
I try not to be an evangelist about the diet because I found quickly people have lots of opinions about diets. All I can say is I sleep better, I feel better, and my seizures have reduced in frequency and intensity.
I recommend these books: https://www.amazon.com/Ketogenic-Modified-Atkins-Diets-Treatments-ebook/dp/B01CGVGZNQ/ref=nodl_
https://www.amazon.com/Art-Science-Low-Carbohydrate-Living/dp/0983490708/ref=nodl_
I have one of these in my med cabinet. I'm epileptic and a transplant recipient so I take a bunch of meds and can't miss any.
https://www.amazon.com/Glide-Signs-Reminder-Weekly-Organizer/dp/B075Q3YDBR
Try searching a job search site such as Indeed using terms associated with your interests. Epilepsy is a basic term, but you get the idea. You'll get a better idea of what jobs are available.
Mayo Clinic has the full details on this med. They are often ranked #1 or #2 in the nation for neurology, so their pages are a good resource. See the Precautions and Side Effects sections for more info.
I included a link to the FDA's sheet as well.
Be sure to go over it with your doctor. I took this for a few years and it did make me more sleepy than usual and I eventually became impotent at age 30. My memory seemed OK but maybe not quite as sharp as it should have been. I ultimately ended it just because it didn't stop my seizures well enough.
https://www.mayoclinic.org/drugs-supplements/carbamazepine-oral-route/description/drg-20062739
https://www.fda.gov/downloads/Drugs/DrugSafety/UCM246796.pdf
Yes! This makes total sense to me. Finding out your grandpa was dead was obviously extremely stressful - stress lowers your seizure threshold and can trigger a seizure. Smells can absolutely be an aura, as well as deja vu. See symptoms: https://www.mayoclinic.org/diseases-conditions/temporal-lobe-seizure/symptoms-causes/syc-20378214
I've tried 10 or 11 meds and various combos at this point. Trileptal was one of the easiest to tolerate as far as daily side effects go. It made me a little dizzy but no emotional problems, change in appetite, weight gain/loss, or memory difficulties.
That said, it can cause a few side effects you might not notice at first but they can be a problem. One is low blood sodium. Sounds like good thing with the typical Western diet, right? The only problem is it can actually get too low, causing a person to become extremely dizzy and even pass out. Looks like a seizure, but it isn't. It's just critically low blood sodium. I'd bring this up with your neuro and make sure you're tested for this. If needed, sodium tablets are cheap and available at almost any pharmacy. I ended up taking sodium tablets while I was on it.
It can also cause problems with Vitamin D and calcium, so you might be wise to take a supplement. Last but not least some people get kidney stones from it. This can usually be avoided by making sure you stay well-hydrated. Make sure to go over all of these concerns with your neuro.
You can look up detailed info on Mayo Clinic's site:
https://www.mayoclinic.org/drugs-supplements/oxcarbazepine-oral-route/side-effects/drg-20067615
That varies from person to person. For me personally, Benadryl is a guaranteed seizure but I know this doesn't hold true for everyone. There are alternatives today - maybe you could try Zyrtec??? That one doesn't bother me at least. Run it by your doctor first though.
Also, be sure to keep your neuro aware that you've having hives. This can be a sign of an allergic reaction to your seizure medication. It can result in serious problems in the long term so stay on top of it. If your neuro refuses to consider this as a possibility then I'd seek out a second opinion. I'm not a doctor so this isn't medical advice. I just know I had rough allergic reactions to two seizure meds in the past. One of them almost killed me - I spent a week in the ICU recovering. So, naturally I'm a little cautious on this. See the Mayo Clinic's page on "Precautions" for Lamictal. Skin rash is one of them, about halfway down the page.
https://www.mayoclinic.org/drugs-supplements/lamotrigine-oral-route/precautions/drg-20067449
This may be a side effect of your medication and not seizure activity. See Mayo Clinic's site - nausea and vomiting are both listed as side effects near the bottom of the page under the "More Common" section.
Bring it up with your neuro. You may be able to avoid this side effect.
https://www.mayoclinic.org/drugs-supplements/lamotrigine-oral-route/side-effects/drg-20067449
There are such things as open MRIs. I don’t know if anywhere near you has them (cuz I don’t know where you live 😅) but you can try searching.
I’ve included a WebMD Link about them.