tag:blogger.com,1999:blog-548540678738371358.comments2022-03-02T11:34:15.503-08:00Brain Blips: An Epilepsy JourneyDesireehttp://www.blogger.com/profile/13043097423155993925noreply@blogger.comBlogger68125tag:blogger.com,1999:blog-548540678738371358.post-64257002301598974202020-12-24T15:51:36.883-08:002020-12-24T15:51:36.883-08:00That seed has to survive to sprout. It must.
Davi...That seed has to survive to sprout. It must. <br />David KDavid Khttps://www.blogger.com/profile/17614366181969795247noreply@blogger.comtag:blogger.com,1999:blog-548540678738371358.post-48919821078002111992020-11-05T21:19:30.874-08:002020-11-05T21:19:30.874-08:00Dearest Awesome. Words do not muster enough of wha...Dearest Awesome. Words do not muster enough of what there is to be said to someone who demonstrates such a "badass" approach to life as you do. You are an incredible individual as the writer of this birthday wish so clearly knows, who you bring such deep true honest joy to. What a great gift you are to them and others who love you. It's beautiful. You do not know me but I am someone who think of you daily all the way in California. I am sending you the biggest virtual 16th birthday hugs, and the sweetest birthday wishes; and a huge hug to your wonderful parents, too. Keep on doing your thing. Love and mad respect to you. Kjhttps://www.blogger.com/profile/07401750332344850402noreply@blogger.comtag:blogger.com,1999:blog-548540678738371358.post-37022033774179972762020-11-05T11:30:54.000-08:002020-11-05T11:30:54.000-08:00HAPPY! HAPPY! SWEET SIXTEEN! Your mom left out on...HAPPY! HAPPY! SWEET SIXTEEN! Your mom left out one kudo: Wisdom! You are wise beyond your years to know that the struggles and challenges you've endured have made you the great and wonderful person you are! So glad we got to meet! Mirah Ribenhttps://www.blogger.com/profile/13626873757236976251noreply@blogger.comtag:blogger.com,1999:blog-548540678738371358.post-79363748430037751932020-05-04T08:43:07.589-07:002020-05-04T08:43:07.589-07:00I pray that both you and she are blessed with rene...I pray that both you and she are blessed with renewed and continued strength, stamina, and endurance as the marathon you ran so bravely and fiercely turns into an unfair and ever enduring triathlon. <br /><br />Your imagery is poignant and palpable. Together you’ve climbed of the Mount Everest. Your image of someone in the desert crawling toward water to quench an arid throat . . . and having it turn into a mirage is painful and descriptive. <br /><br />Awesome’s life has not YET become more like her peers' lives. But as you also so wisely noted, her peers' lives have become more like her and I hope this shared experience brings some comfort in some odd way. <br /><br />COVID is monkey wrench thrown into ALL of our lives. Some in far more drastic ways than others. What always helps me in trying, dark, challenging and frightening times is focusing on those who have it worse. A cup half full CAN be re-filled again and again! At least you have a cup! You will both find the strength to go on even when it seems insurmountable.<br /><br />Think of those living in the street and fill your hearts with gratitude for how fortunate we who still have enough to keep a roof over our heads and the lights on . . . food to eat, even if a bit more challenging to obtain, are. Take some strange comfort (?) in knowing that your family is not the only family dealing with all of that that WHILE dealing with a health crisis as well, many of whom lost jobs and with it their health insurance, while dealing with a major health crisis! Not in a misery loves company way, but in a team effort way! Marathons are never run alone!<br /><br />The inner and structural tools that got over Mt. Everest will get you over the next and I pray the final one! You and she and all of your family will be that much more prepared for the journeys yet to come having made it over what turned out to be the first major hurdle. You have created for yourself a support system, a team pulling for you. You may feel alone, but you are not.<br /><br />And, Desiree, please don't ever beat yourself up for promises that turned into false hopes. She needed every ounce of hope you steadily fed her all the way to the summit and back to base camp. You are her rock and her head coach, her cheering squad and her Sherpa! You’ve done a great job! You did not fail her because the hopes and dreams you continue to maintain for her are still there and will again carry her across all challenges ahead. Look at COVID as a resting point for you both to catch your breath and regain renewed strength and focus for the road still ahead.<br /><br />Carry on brave soldiers! There are yet more battles to this war! Know that you have a larger circle of armchair supporters cheering you on and marveling at your bravery and courage through every let down, disappointment and every new turn and bump in the road. You ARE closer to the end result and each difficult and painful step gets you further and further to it! <br /><br />I pray that both you and she are blessed with renewed and continued strength, stamina, and endurance . . . You can do it. You WLLL do it! <br /><br /><br />Mirah Ribenhttps://www.blogger.com/profile/13626873757236976251noreply@blogger.comtag:blogger.com,1999:blog-548540678738371358.post-16409048053377221992019-09-17T14:16:06.490-07:002019-09-17T14:16:06.490-07:00This comment has been hidden from the blog.Anonymoushttps://www.blogger.com/profile/14764626774623317370noreply@blogger.comtag:blogger.com,1999:blog-548540678738371358.post-44193987172246983192019-01-06T05:18:37.862-08:002019-01-06T05:18:37.862-08:00Heartwrenching! continued prayers. feeble words fr...Heartwrenching! continued prayers. feeble words from me.<br />Anonymoushttps://www.blogger.com/profile/06025775465210983016noreply@blogger.comtag:blogger.com,1999:blog-548540678738371358.post-80044740446326309662019-01-06T00:59:32.205-08:002019-01-06T00:59:32.205-08:00Sending love and prayers.
Sending love and prayers.<br />Dr. Michelle Harrisonhttps://www.blogger.com/profile/04400248086225568623noreply@blogger.comtag:blogger.com,1999:blog-548540678738371358.post-59644640048371998642018-12-23T16:38:57.442-08:002018-12-23T16:38:57.442-08:00Dear Awesome and Desiree and David,
What a test ...Dear Awesome and Desiree and David, <br /><br />What a test this has been. I'm so sorry. I pray the doctors will be skillful and wise. I am quite speechless after reading this. Just want to send you all my love. ♡♡♡♡♡Jane Jeong Trenkahttps://www.blogger.com/profile/01121816864466563629noreply@blogger.comtag:blogger.com,1999:blog-548540678738371358.post-9391732931707015622018-09-19T17:51:50.324-07:002018-09-19T17:51:50.324-07:00Thank you for sharing her with us.Thank you for sharing her with us.Mirah Ribenhttps://www.blogger.com/profile/13626873757236976251noreply@blogger.comtag:blogger.com,1999:blog-548540678738371358.post-32223784097496543652018-09-11T20:07:59.337-07:002018-09-11T20:07:59.337-07:00Thank you for your earlier encouragement regarding...Thank you for your earlier encouragement regarding trying CBD to help my daughter's seizures. PA finally legalized it and we are ready to go, in fact we just got her first "prescription" today. I have a couple of questions that you may be able to shed some light on, since you started this journey long before we did. <br /><br />First, visiting the website you cited (Realm of caring), their recommended starting dose, according to the website for medically sensitive adults, is 25Mg per day. However the advisor at the medical marijuana store recommended 2.5 Mg per day and increasing it if necessary but nowhere near ten times the amount (their brand also includes THC in a 4:1 ratio, 4parts CBD, one part THC). There is such a large discrepancy between the "advisor" and Realm of Caring, I wonder if you have any advice regarding that.<br /> <br />Second, I wonder how things are now with your daughter; has she been able to control her seizures with just CBD, or is she back on AED-s? <br />As a side note I might mention that I have been taking CBD that's available online for knee pain at the rate of 40Mg per day and it has been very effective.<br /> I would really appreciate any light you can shed on these. Thank you.Anonymoushttps://www.blogger.com/profile/03664436380386243479noreply@blogger.comtag:blogger.com,1999:blog-548540678738371358.post-9811230376115346832018-08-01T09:19:59.501-07:002018-08-01T09:19:59.501-07:00Thank you so much for sharing this. It hit too cl...Thank you so much for sharing this. It hit too close to home for me and I'm trying to fight back tears but it needed to be shared and people need to know. <br />Anonymoushttps://www.blogger.com/profile/01150823098955691808noreply@blogger.comtag:blogger.com,1999:blog-548540678738371358.post-51173678568203166752018-07-18T13:00:16.849-07:002018-07-18T13:00:16.849-07:00Awesome venting her frustration is so very underst...Awesome venting her frustration is so very understandable. I hope healthy opportunities to vent and deal with her very justified anger at the E-monster are included in her total health care.Mirah Ribenhttps://www.blogger.com/profile/13626873757236976251noreply@blogger.comtag:blogger.com,1999:blog-548540678738371358.post-35864439387092733092018-07-18T10:20:23.417-07:002018-07-18T10:20:23.417-07:00Move to California where medicine that can help he...Move to California where medicine that can help her is legal and available... Love and prayers for you...<br /><br />Anonymoushttps://www.blogger.com/profile/08565242121635814189noreply@blogger.comtag:blogger.com,1999:blog-548540678738371358.post-24096863878700430472018-07-18T00:13:48.921-07:002018-07-18T00:13:48.921-07:00This comment has been hidden from the blog.Desireehttps://www.blogger.com/profile/13043097423155993925noreply@blogger.comtag:blogger.com,1999:blog-548540678738371358.post-53722486614493010342018-07-17T21:29:01.383-07:002018-07-17T21:29:01.383-07:00Thanks for sharing. That picture is a perfect visu...Thanks for sharing. That picture is a perfect visualization of it. Waking up the other day, on the floor, my face in the carpet, after who knows how long, realizing I had a seizure...then hours later, by accident, catching my back in the mirror out of the corner of my eye, seeing the 22 inch bruised scar my bed frame had given my back on the fall - gravity is not forgiving. I still wonder why my mom, if I choose to share with her that it happened, gets emotional about it - reading this reminded me what she must have gone through all those years with me as a kid - which is why now, at 40 something, I usually don't tell her when it happens, no need for worry with 3000 miles in between right?...tufa4311https://www.blogger.com/profile/16886401646572242382noreply@blogger.comtag:blogger.com,1999:blog-548540678738371358.post-85465056622582377872018-07-17T20:34:15.844-07:002018-07-17T20:34:15.844-07:00This comment has been hidden from the blog.tufa4311https://www.blogger.com/profile/16886401646572242382noreply@blogger.comtag:blogger.com,1999:blog-548540678738371358.post-81700878963830712952018-07-17T14:33:56.548-07:002018-07-17T14:33:56.548-07:00It's not fair!It's not fair!Mirah Ribenhttps://www.blogger.com/profile/13626873757236976251noreply@blogger.comtag:blogger.com,1999:blog-548540678738371358.post-30961231004443436322018-07-16T15:18:50.545-07:002018-07-16T15:18:50.545-07:00D&D,
Wow! Just wow! You guys are in the thick ...D&D,<br />Wow! Just wow! You guys are in the thick of it and I have prayed for you some. now more than ever. Awesome is amazing! You guys....nvm. Your story brought tears to my eyes -so much love. I only understand a little. My grand as a baby had seizures for a couple years, some severe, especially the first. I can't stand to even think about it. I cry if I tell anyone about it. God only knows, I handled it so badly!<br /> Had to go to Mathenson to learn what to do to handle. Thank you for sharing.<br />Beth<br />Anonymoushttps://www.blogger.com/profile/06025775465210983016noreply@blogger.comtag:blogger.com,1999:blog-548540678738371358.post-61340554175603097122018-07-16T14:27:57.489-07:002018-07-16T14:27:57.489-07:00Thank you for sharing, Desiree. This kind of detai...Thank you for sharing, Desiree. This kind of detailed account of a public seizure really helps people unfamiliar with epilepsy to understand the insidious nature of this condition. xxJulia Rollingshttps://www.blogger.com/profile/13644979685784771163noreply@blogger.comtag:blogger.com,1999:blog-548540678738371358.post-44963018565432143752018-07-03T23:27:01.444-07:002018-07-03T23:27:01.444-07:00Hi Theodore,
I would not let our experience deter...Hi Theodore,<br /><br />I would not let our experience deter you from using CBD with your daughter! <br /><br />Just as in all things epilepsy, things are very individual with CBD. Some have CBD/AED interactions; some don't. If you look at the CBD/drug interactions chart (available on Realm of Caring's site), you'll see that there is a range of results when CBD and Vimpat interact. <br /><br />https://theroc.us/images/AED%20interaction.pdf <br /><br />The most common thing is that CBD reduces Vimpat blood levels--not that CBD increases Vimpat blood levels (as was the case with our daughter). Yes, our daughter was an outlier in this regard. <br /><br />In terms of the article and the fact that it found that there were "no significant interactions between CBD and Lacosamide" even a massive doses.... Gee, what can I say? What we experienced was real. Studies involve only so many people. People often lie outside the bell-shaped curve. I will say that my daughter's doctors have come to believe that she has unusual difficulty in metabolizing AED's--that they seem to simply build up in her system and cause trouble. So it's not surprising to me that she should prove to be an outlier...<br /><br />You can reduce the likelihood of interactions between CBD and Vimpat by making sure to dose CBD and Vimpat at least 2-3 hrs apart from each other. For many, this is enough to prevent interactions. If you DO get interactions, it's not the end of the world--you just have to do the testing (as described below) to determine what is happening with the AED blood levels--and then adjust the AED dose upward or downward, depending on what the blood levels show has happened. For most people this solves the interaction problems. Again, our daughter was not typical. What our doctors finally determined is that Vimpat was likely causing seizures for our daughter--something we'd suspected ourselves for some time....<br /><br />It would be really good for you ask for blood draw to check Vimpat blood levels BEFORE starting CBD. That way, after you start CBD, if you suspect that your daughter is having interactions (based on symptoms) then you can ask for another blood draw and another Vimpat blood level and know immediately, by comparing it with your before-CBD baseline Vimpat blood levels, whether CBD causes an increase or decrease in Vimpat blood levels. You can then adjust the Vimpat dose accordingly to get Vimpat blood levels back to baseline. <br /><br />I would also recommend that you call Realm of Caring and talk to one of their patient counselors. They will help you figure things out. Realm of Caring is amazing! https://www.theroc.us/<br /><br />In terms of dosage of Vimpat, our daughter was taking 200 mg a day and weighed about 75 lbs. Anything above that dose and she was so seriously nauseated that she was non-functional. <br /><br />Desireehttps://www.blogger.com/profile/13043097423155993925noreply@blogger.comtag:blogger.com,1999:blog-548540678738371358.post-84407847938657932022018-07-03T19:40:17.301-07:002018-07-03T19:40:17.301-07:00My daughter, now 56, has been on Vimpat (250Mg/Day...My daughter, now 56, has been on Vimpat (250Mg/Day) for several years now, tolerates it relatively well. She has been having unexplained (and undiagnosed) episodes of what appears to be extreme pain resembling severe cramps. She is very low-functioning, so can't indicate where it hurts. I have been tempted to try CBD oil and did some research on the interactions between the two. I was all happy & ready to try based on this article:<br /><br />https://www.mdedge.com/neurologyreviews/article/128497/epilepsy-seizures/how-does-cannabidiol-interact-antiepileptic-drugs<br /><br />The article clearly states that while CBD oil negatively interacted with a number of AED-s, there were "no significant interactions between CBD and lacosamide (Vimpat)" even at the massive doses of 50Mg/kg/day. So I was ready to go. Then I found your blog and now I'm not so sure. Apparently in your case CBD was definitely interacting with the Vimpat. I'd be curious to know what was the CBD dosage you were administering ? Thank you and also thank you for letting us in on your experiences.<br />Anonymoushttps://www.blogger.com/profile/03664436380386243479noreply@blogger.comtag:blogger.com,1999:blog-548540678738371358.post-4720903556677641542018-06-30T16:08:49.061-07:002018-06-30T16:08:49.061-07:00You amazingly describe the indescribable...and you...You amazingly describe the indescribable...and you amazingly make the tenseness of your life seem calm and easy. It was a great pleasure to visit and spend time with all of you! Mirah Ribenhttps://www.blogger.com/profile/13626873757236976251noreply@blogger.comtag:blogger.com,1999:blog-548540678738371358.post-52824237507416580302018-06-10T18:59:56.873-07:002018-06-10T18:59:56.873-07:00I so admire your remarkable, tenacious perseveranc...I so admire your remarkable, tenacious perseverance and persistence in spite of obstacles, discouragements, and huge challenges...and your ability to share your journey articulately and even poetically, without anger or self-pity. I totally admire all of that because I posses none of it! I'm a woe-is-me whiner! <br /><br />I wish you continued strength and grace....<br />Mirah Ribenhttps://www.blogger.com/profile/13626873757236976251noreply@blogger.comtag:blogger.com,1999:blog-548540678738371358.post-89160506874654826182018-05-29T04:44:31.577-07:002018-05-29T04:44:31.577-07:00I completely relate. Thank you for this great post...I completely relate. Thank you for this great post.<br />Anonymoushttps://www.blogger.com/profile/05204642963553121213noreply@blogger.comtag:blogger.com,1999:blog-548540678738371358.post-38259188286647957202018-03-24T21:19:09.447-07:002018-03-24T21:19:09.447-07:00Mirah,
Thanks for your comments, as always! And ...Mirah,<br /><br />Thanks for your comments, as always! And yes, I've been following your New Zealand medical adventure... <br /><br />I've written a post-script to the post. We did get it all worked out. <br /><br />In terms of "auras"... In the epilepsy context, "aura" is a medical term. It doesn't mean seizure trigger. An aura is a simple partial seizure--seizure activity in one part of the brain--that often comes as a first warning for a bigger seizure (more widespread seizure activity) that is to come. <br /><br />It's unfortunate that the same word means something different in another context. Like many words, it means different things in different contexts. In an epilepsy context, an aura is a seizure of a certain kind. In an epilepsy context, aura is definitely a medical term; medical professionals like neurologists and epileptologists use the term and there are medical studies that use the term. Desireehttps://www.blogger.com/profile/13043097423155993925noreply@blogger.com