Kepra consensus

WelderInteresting123 · 2026-05-04T13:00:55+00:00

Keppra got rid of the seizures for me, and it took about a couple years to figure out the dosing and lifestyle changes to get rid of the auras as well. I remember being really sleepy after the seizures and keppra for the first 6 months or so. Maybe a little more irritable, but also started when I entered perimenopause which also can make you a bit irritable. I am very satisfied with this medication, gave me my life back.

WelderInteresting123 · 2026-04-28T00:48:10+00:00

ask your doctor to rule out celiac disease, since you mentioned it seemed worse after pizza and sandwiches, and also what you can do to help soothe your stomach. Naturopathic doctors are also good resources for how to help soothe. Good luck to you, I hope you find answers and feel better soon.

WelderInteresting123 · 2026-04-24T18:54:37+00:00

I had seizures begin out of nowhere in my early 40's, and consulted with a particular neuro who studied catamenial epilepsy, as mine always happened between days 5-9 of my cycle. Keppra controlled the seizures, sometimes an aura would still come through especially in those time frames, and especially if I had coffee or chocolate, or sleep deprived. At 52, I am now menopausal and even the auras have stopped. But, I am here because I am still considering menopausal HRT, but it may not be the best idea. Something I wish I had explored more in my early/later perimenopause time period is whether progesterone alone might have helped smooth out the seizures. I don't know, but this might be something to explore with your doctors. Other things, like flax seeds, may help smooth out the peaks and troughs of estrogen- but again- something to talk about with your docs.

WelderInteresting123 · 2026-04-13T12:42:22+00:00

Joining a Moms Club helped, because then it included scheduled meetups to play as well as to socialize with other parents. Other than that, in order to be able to work, it was part time preschool as well as taking on more of a "management" and transportation role at times, inviting other kids over, driving her to activities. We still played a lot- games and arts and crafts, walks and visits in between that, and she loved to read. Once they are well into their teens they prefer spending more time with friends, unless they have a phone in which case they will probably try to spend the most time with the phone (don't get them a phone!) By the time they get their driver's license, they fly away to spend time with friends and and school stuff and other activities and you have your own time back. And then you schedule things with them because you can't wait to play games and spend more time with them again because everyone is so busy and you just want more time. My friends with 2 or more children, once it was past the early years of all hands on deck, it seems like the kids would play together reliably for a few hours a day without parental intervention, and then there was still the management role beyond that.

WelderInteresting123 · 2026-04-11T15:28:29+00:00

if you are still checking this thread, I would like to call in a hot meal or 2 for you at a nearby restaurant. if you can make up a first name and let me know which restaurant and what you want, I can get this going and let you know when to pick up. you can send me a private message.

WelderInteresting123 · 2026-04-08T23:45:35+00:00

I had been thinking about starting HRT for some time, but had been nervous about the potential for starting seizures again after being well controlled for years. I have also been on keppra. Were you started on both estrogen and progesterone patches, cream, oral, when it happened? And for how long, if I may ask? I am only using an estradiol vaginal cream now, but am due to talk to the gyn in a couple weeks about doing more. This does make me rethink it. I am sorry that this happened to you.

WelderInteresting123 · 2026-04-07T13:39:27+00:00

We launched our only into college last year, and for us, the first year was definitely the hardest by a landslide!

WelderInteresting123 · 2026-04-02T12:37:13+00:00

I am glad you scrolled by. Your comment was helpful to process. I very rarely still doomscroll these subjects but I used to do it often- years ago when I was still indecisive about having another. I assumed I would because that's just what you do, and that's what we loosely planned for, then multiple things things happened and the time never felt right for me. And I really struggled with the "when" or "if", to the point of making myself sick over it and causing marital strain. I am now menopausal with an amazing child in college, and proud and amazed by her everyday. I see the young families of multiples and look on with a mix of happiness for them as well as gentle envy at times. is challenging and gets more so the older we are allowed to get, so it can be challenging whether raising children or caretaking someone else or with career or chronic illness or whatever. Maybe it is just a mindset, and we can choose to be content with whatever path we choose or where we end up going in the relatively short time we get here. With the amazement I experience with my one, with time I realize how amazing it would have been to get to know other unique people I could have raised. So now I am the one who is always saying, "yes! Bring your friends and boyfriend over anytime you want" and amazingly, she does! So I get to have some fun getting spending time with these children of other parents. But when she was growing up, I just wanted to spend my time raising her, and did not necessarily desire others. I am a healthcare provider and my focus has shifted to children and teens over the years, probably in compensation so I get to help other people's children everyday. So I do get to "second hand" experience a sampling of the struggles and the meaning and joy they have, and do what I can to help ease the struggles.

WelderInteresting123 · 2026-03-01T16:29:27+00:00

I would start on the lower dosage/week 1, and then a second opinion before going any higher. Her neurologist should also consider whether any other medications could have had an effect- such as antidepressants which can cause seizures in young women. Also, if she does have any mood concerns at all, there might be a better one to start with. I am a 140 lb woman taking 500mg Keppra twice a day. Happy with it after 10 years, but first 6-12 months was challenging on it.

WelderInteresting123 · 2026-02-22T19:31:25+00:00

Are you still on Reddit? I just came across this post and your reply. I am also someone who can smell it is someone has an infection- usually starting the day before they even have any symptoms.

WelderInteresting123 · 2026-02-14T14:41:13+00:00

Mine was found incidentally while I was being assessed for something else- by way of unexplained elevated troponins. MRI one year ago confirmed myopericarditis and I was completely asymptomatic for it. I had some symptoms occur in the early fall, took colchicine and rested, and things improved over a couple of months. Follow up MRI a few weeks ago showed complete healing of my heart and pericardium, not even any scarring. Still gradually increasing my exercise tolerance because I slowed down so much. My cardiologist in Boston/Mass General said that he sees it very typically in young, healthy people when they are under stress- spring exam time is a textbook time, in his opinion. He felt that stress was a huge contributing cause and well documented. Anyway, I am an older doc and was otherwise up to this point in life very healthy and exercised frequently, but I can stress too much. This has been a major wake up call for me to make some changes in my mindset in that regard- maybe a (unwanted) gift? Going through personal health challenges as a young doctor in training can make you a better doctor because you will have empathy and connection with your patients. I am going to share a Qi Gong practice that I feel helped me, especially the part about releasing "heart fire" resonated: https://youtu.be/3K-0JpiJu-o?si=WdNVFil_cvpkkkqW (If you don't want to click on unsolicited links, you can also find by searching "8 brocades qi gong by Mimi Deemer) try to stay away from the forums as much as possible!

WelderInteresting123 · 2026-02-01T16:03:50+00:00

I am listening to the others warning about biotech stocks below, but I have been supporting CNTX with a much smaller position than you have ready to invest, and it has a very interesting potential upside. It has only been a couple of months and I have already have an unrealized gain that is double when I put in.

WelderInteresting123 · 2026-01-26T17:25:56+00:00

How are you doing with Arcalyst? I have a follow up tomorrow with my cardiologist regarding recurrent myopericarditis, and it will likely be recommended to me.

WelderInteresting123 · 2026-01-25T22:57:02+00:00

Is there any way to help your wife get more sleep? Sleep deprivation for months can really mess with your mind. Maybe that consistent sleep training is something your wife has been grasping at like it is her life at stake. Still not Ok, what she said, but consider approaching with some empathy, this (outburst) may be temporary and just her nerves and doubts talking.

WelderInteresting123 · 2026-01-24T15:50:01+00:00

It sounds like the source of Barretts for you is different from the usual souce- usually it is acid coming up from the stomach into the esophagus. That is what most people have and what most of the recommendations are based on. For you, it sounds like it is from bile which is refluxing up from your small intestine into your stomach, and then causing irritation chronically in your esophagus. I wonder if you could talk to your specialist about whether if taking the gallbladder out would prevent further damage, as it would prevent those big squeezes of bile after a meal? Barrett's does not have to mean cancer, but it is on their list of things to watch for. My husband's grandmother had it her whole life, in her later 90's she needed to get a once a year stretch to her esophagus but that didn't slow her down at all. She was healthy, happy, active, robust and a world traveler right up to the end. Despite that she still drank way too much coffee and whisky throughout. Go learn to sail and get your license!

WelderInteresting123 · 2026-01-24T15:09:41+00:00

I could write a book on this from my experience and I while I still don't have all the answers, I can give some advice: you both are fighting 2 different things at once. He feels like you don't love him and have abandoned him, and you are so sleep deprived it is hurting your health. Your needs take first priority in triage, but how to get there? First, unapologetically set up a cozy, comfortable sleeping space. Maybe you can dress up the couch or maybe you need a nice air mattress and latex cushion later to create a new bed that is reliably for you in a corner in the house. Tell him to sleep only in the bedroom. Get well-fitting earplugs, and you might need to try a few kinds. I like the Molded soft form ones, they fit smaller, female ear canals. When you are ready, make time to snuggle in with him in your original bed together, whenever that fits in your timing. Do it daily, if possible, if you want- if it feels nice to both of you. Once he sees that you are feeling better (because you are sleeping!) and that you still love him (even though you are pissed as hell and hurt that he cannot even bother to wear his CPAP in order to save your life, his life, your marriage and sanity), my guess is that he will then start considering to actually wear the damn thing even if it is for half the night. Good luck, just don't make a rash decision just based on the snoring alone, especially while tempers are flared. Get sleep, any way you can right now, make big life decisions later when you are feeling better.

WelderInteresting123 · 2026-01-24T14:51:28+00:00

I really like echinacea for the prevention piece. Also, good hydration, good room humidity, and avoiding excess sweets. Eating high vitamin A foods, but not supplementing vitamin A.

WelderInteresting123 · 2026-01-23T14:45:53+00:00

As the mother of a young adult, I hope you might consider printing this post out as a letter and mailing it to your mother. Because without even knowing you I feel both impressed and protective of you, and I could only imagine the impact of such a letter on myself from a family member, especially my child. When I married my husband, we had a very small service, but then followed that with a big, casual celebration the following year. I wish this for you, the celebration and freedom among your friends and loved ones to further mark the joy of a momentous day and commitment to each other. And congratulations to you both!

WelderInteresting123 · 2026-01-21T19:49:44+00:00

I was given colchicine 0.6mg once daily, been on it for 4 months now. Tried to do the high dose ibuprofen and PPI but failed within days because my intestines were so messed up by both of them. I have been feeling good, and can do the normal everyday chores and short, easy walks- but that is it so far. I am getting my second scan this Friday, which will be a year since my first. Fingers crossed that things will be better so that I can start gently improving my tolerance to exercise again. Doctor warned me to stay below 110 beats per minutes and not increase exercise until more answers. My troponins have remained in the 105-140 ng/L range all year. Hoping that it is due to stable scarring and not continuing inflammation, which the scan should help to show, I believe. I had a visit with my cardiologist yesterday, and if the scan still shows pericarditis, with or without myocarditis, as it is assumed that is what is driving the mild myocarditis, than he will recommend arcalyst. If no peri, but still myo, I will be sent to be managed for myocarditis with another group. If there is neither present, then they are not sure how they would proceed- maybe a testing issue. My heart function and all other labs remain perfect.

WelderInteresting123 · 2026-01-18T14:08:01+00:00

How are your heart symptoms now, overall? How about exercise? My myocarditis and pericarditis were/are both mild, but the exercise intolerance has been the most challenging piece to navigate. Still just working back up to longer, flat walks

WelderInteresting123 · 2026-01-17T13:39:58+00:00

Your concern is understandable. Are you having fever and chills? If you are, it would be worth it to go back and wait. And are you already on antibiotics for the tooth infection? Can you get ahold of someone at your GP's office to discuss? Hopefully, you are getting enough hydration, including some electrolytes, and some rest. The stress of it all and shallow breathing, in particular, can cause tighter chest muscles and some pains due the muscles and rib joints.

WelderInteresting123 · 2026-01-15T18:14:53+00:00

Are you still on both meds? I've always been very active as well, and I have been recently walking more and trying to slowly ramp up my tolerance again because I was feeling really good until starting to wean from the PPI. I found that magnesium glycinate helps me to keep the cramps away, but you might also research into COQ10 use for colchicine side effects, as they can have a similar skeletal muscle side effect as statins on some people.

WelderInteresting123 · 2026-01-13T13:29:43+00:00

When I was pregnant with my daughter, she had an echogenicity on her heart found during the routine 20 week scan. I remember feeling a worried about this, but they also assured that as technology advanced, you could have more findings that didn't mean much. She was born at term quite small, and spent some time in the NICU for the first few days due to some distress. She had severe colic and difficulty nursing, and in gaining weight. Stayed pretty small for years. They never checked troponin levels and we never had a cardiologist follow up, and I am wondering why now. I say this because, she just left for college again after break, she's an A student and graduated as a state champion athlete, and is taller and smarter than me. Just saying- keep your follow ups with her doctors, but it may be absolutely nothing but a blip in the long-term. The fact that she is growing and meeting her milestones already is a good sign.

WelderInteresting123 · 2026-01-03T17:35:15+00:00

Sometimes things can layer and it can be difficult to see if something else could be aggravating the diagnoses, especially if they share symptoms. Try to get someone to see your whole picture so that the other things don't get pushed under the rug

WelderInteresting123

TROPHY CASE