tag:blogger.com,1999:blog-655962722302095847.post5314524695954272838..comments2024-03-27T20:20:54.505+01:00Comments on Epiphany: Potassium Bromide for Intractable Epilepsy and perhaps some AutismPeter Lloyd-Thomashttp://www.blogger.com/profile/10173383229834614994noreply@blogger.comBlogger33125tag:blogger.com,1999:blog-655962722302095847.post-56611128878982410632023-07-21T21:53:05.908+02:002023-07-21T21:53:05.908+02:00KBr has a very long half-life and will take 5-6 we...KBr has a very long half-life and will take 5-6 weeks to reach its peak level in the bloodstream.<br />You are best advised to wait and trial bumetanide when it arrives.<br />You need to know which one works. Maybe neither, maybe both.<br />Peter Lloyd-Thomashttps://www.blogger.com/profile/10173383229834614994noreply@blogger.comtag:blogger.com,1999:blog-655962722302095847.post-69283371207836875022023-07-21T18:33:27.863+02:002023-07-21T18:33:27.863+02:00Hi Peter
Bumetanide will take a month to arrive. M...Hi Peter<br />Bumetanide will take a month to arrive. Meanwhile I want to try KBr.. I can find it as pet supplement online is that applicable for human use and please let me know minimum dosage mg/kg.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-655962722302095847.post-77504063083662367462023-01-16T10:18:57.781+01:002023-01-16T10:18:57.781+01:00Potassium bromide is actually sold as a cheap bulk...Potassium bromide is actually sold as a cheap bulk chemical, as well as for veterinary use.<br />It is an extremely simple chemical and has been used for 150 years in medicine.<br />It used to be a cheap drug for humans but now they want to make a lot of money out of it.<br /> Peter Lloyd-Thomashttps://www.blogger.com/profile/10173383229834614994noreply@blogger.comtag:blogger.com,1999:blog-655962722302095847.post-81025830272996348182023-01-16T09:11:21.704+01:002023-01-16T09:11:21.704+01:00i cant find Kbr medical, just Kbr chemical from Me...i cant find Kbr medical, just Kbr chemical from Merck brand, is its safe ?Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-655962722302095847.post-91994674347419899352020-11-29T21:56:12.170+01:002020-11-29T21:56:12.170+01:00Thanks for the reply Peter.
I'm still going ...Thanks for the reply Peter. <br /><br />I'm still going through the blog post by post, catching up. It's been a hectic year. <br /><br />My son takes a daily multi with 150mcg potassium iodide, 70mcg selenium chelate as well as NAC 1200mg. Added another 300mcg selenium drops today on top of that 70mcg. He's quite hyperactive this afternoon so maybe that was a bit too much. <br /><br />I would like to find some better information on Potassium Bromide and it's effects on humans. Most internet sources concern veterinary dosage or just go into extreme detail about negative side effects. <br /><br />This wellness blog post is on bromide dominance and iodine deficiency. I'm not overly concerned but still curious. <br />https://oawhealth.com/article/bromide-dominance-theory-how-competitive-inhibition-causes-iodine-deficiency/<br /><br />I purchased raw KBr from a lab supply company, USP grade. <br />It caused a slightly upset stomach and lower back pain for myself at 400mg. I've only given 150mg with food, no overt discomfort, and good results paired with .5mg bumetanide. I dose him every other day just to be cautious. Would love to find a source of dibro-be mono. <br /><br />Will be trialing verapamil finally in 3-8 weeks and Diamox as a possible replacement for bumetanide. Especially excited about verapamil after all that I've read here, but trying not to get my hopes up too much. <br /><br />MKateAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-655962722302095847.post-9145733774596027922020-11-29T14:58:02.835+01:002020-11-29T14:58:02.835+01:00MKate, you do not need to take iodine with potassi...MKate, you do not need to take iodine with potassium bromide. Iodine is important because without it your thyroid cannot make its hormones. Low iodine will cause problems like low IQ / MR / ID. It is unusual to be deficient in iodine. <br /><br />Testing thyroid function is important. because it is abnormal in some people with autism and correcting this with T3/T4 improves the outcome. The problem is when people give T3 to children with normal thyroid function. What happens next is the thyroid stops making its own T3 hormone and you end up in a much worse position. It is best to have an endocrinologist check thyroid function, I did this years ago. We agreed to do a short term trial of T3 to check my theory of central hypothyroidism. This when T3 is low inside he brain but normal in blood.<br /><br />I found that extra T3 did have an effect on cognition, but this is not a possible therapy for long term use. I did write about low D2 in the brain that would cause low T3.<br /><br />Here is a post from 2013<br /><br />https://epiphanyasd.blogspot.com/2013/09/central-hypothyroidism-or-low-brain-d2.html<br /><br />There is a link I cannot find which was to a Polish researcher at Harvard who looked at low D2 caused by oxidative stress in the brain. The T4 pro-hormone circulates around your body but has to be made into the active hormone T3 via an enzyme called D2. If you lack D2 in your brain you will have normal blood results but have central hypothyroidism. <br /><br />If you lack selenium you cannot make D2. So avoid oxidative stress and low selenium and low iodine.Peter Lloyd-Thomashttps://www.blogger.com/profile/10173383229834614994noreply@blogger.comtag:blogger.com,1999:blog-655962722302095847.post-6148333054012723572020-11-28T22:05:15.920+01:002020-11-28T22:05:15.920+01:00Hi Peter,
Sorry if I missed the answer to this qu...Hi Peter, <br />Sorry if I missed the answer to this question in another post or comment section, but I honestly could not find it. Did you supplement extra iodine with potassium bromide? I'm trialing it with my son and see some good results but want to keep an eye out for any side effects. Also, while I have your eyes here, did you ever end up supplementing Thyroxine for T3? I'm thinking of also trialing that this winter if possible. <br /><br />Many thanks~<br /><br />MKateAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-655962722302095847.post-86024112222713284982018-04-19T12:53:12.141+02:002018-04-19T12:53:12.141+02:00Peter I would like to add that piracetam improved ...Peter I would like to add that piracetam improved my motor function quite a bit, but the effect seems to lasts about 4hours.<br /><br />I found a study before saying it is used in cerebral vasospasms.<br /><br />Also by just googling the first few hits it shows that piracetam shows efficiency in improving ataxia.<br /><br />My short trial of baclofen (used 2.5mg once) is that it also seems to increase the 'flow' of my movements/coordination. However baclofen made me cry alot and I felt very drowsey. One thing with baclofen though is that it made me sleep like a baby (literally slept 10hours) which is rare for me.Aspie1983https://www.blogger.com/profile/14186355234793738967noreply@blogger.comtag:blogger.com,1999:blog-655962722302095847.post-19608782055722902242018-04-19T11:25:53.764+02:002018-04-19T11:25:53.764+02:00I think spasticity is often a feature of autism. R...I think spasticity is often a feature of autism. Rigid "claw-like" hands, arms not swinging naturally when walking are other examples.<br /><br />This seems to be a GABAb receptor problem, that can if needed be treated by your doctor using Baclofen.<br /><br />Baclofen seems to help many (but not all) people with Asperger's. A much more potent version, Arbaclofen, seems to help some people with severe variants of autism and is being actively researched. Peter Lloyd-Thomashttps://www.blogger.com/profile/10173383229834614994noreply@blogger.comtag:blogger.com,1999:blog-655962722302095847.post-79909843438176899742018-04-19T11:18:54.495+02:002018-04-19T11:18:54.495+02:00Amani, epileptiform discharharges are quiet common...Amani, epileptiform discharharges are quiet common in children. Most neurologists think they should not be treated. In non-autistic kids they may well be right.<br /><br />People with autism have many biological anomalies and you cannot treat them all, but an unusual EEG is one that is easy to measure and can usually be normalized. An excitatory-inhibitory imbalance is a feature of most autism, and this might contribute to an unusual EEG. <br /><br />It is worth finding a neurologist who believes in the merit of treating mild EEG anomalies. When you normalize the EEG you likely will see a net benefit in autism symptoms and I would expect improved cognition, not a loss of cognition, this would depend on which drugs was used. If treatment makes autism worse, you can always stop the treatment and go back to how things were before.<br /><br />Here is a paper on this subject:-<br /><br />Should epileptiform discharges be treated?<br />https://onlinelibrary.wiley.com/doi/pdf/10.1111/epi.13108Peter Lloyd-Thomashttps://www.blogger.com/profile/10173383229834614994noreply@blogger.comtag:blogger.com,1999:blog-655962722302095847.post-24236495386306564702018-04-18T21:26:18.549+02:002018-04-18T21:26:18.549+02:00The stiffness i see is in her legs , something lik...The stiffness i see is in her legs , something like as if she is really nervous or angry ...when i try to move her legs , they move and i get to notice that , Anonymoushttps://www.blogger.com/profile/02726739304165595708noreply@blogger.comtag:blogger.com,1999:blog-655962722302095847.post-67853816053099309402018-04-18T21:19:43.495+02:002018-04-18T21:19:43.495+02:00I need to know what is the explaination of my daug...I need to know what is the explaination of my daughter having stiffed legs during her sleep with twiches almost all night , she had an EEG that showed electric activity during her sleep but doctos here didnot consider that important to to avoid the decrease in cognition if they prescribed antiepileptic drugs since she had no seizure, my guts is telling me these night changes are behind her inattention and bad behaviours she has during her day... I need to learn from you here, how can i help her pleaseAnonymoushttps://www.blogger.com/profile/02726739304165595708noreply@blogger.comtag:blogger.com,1999:blog-655962722302095847.post-51247748525847131632017-10-24T15:31:31.549+02:002017-10-24T15:31:31.549+02:00Potassium Bromide is a prescription drug in humans...Potassium Bromide is a prescription drug in humans, but is also used for animals and as a chemical.<br /><br />I think it is best to start with bumetanide.Peter Lloyd-Thomashttps://www.blogger.com/profile/10173383229834614994noreply@blogger.comtag:blogger.com,1999:blog-655962722302095847.post-31688268324841861952017-10-24T14:22:59.316+02:002017-10-24T14:22:59.316+02:00Hi Peter,
Were you able to get potassium bromide ...Hi Peter,<br /><br />Were you able to get potassium bromide without a prescription? I am trying to get bumenatide for my son, but it may take a while. If I can get potassium bromide without a prescription, I thought I would try that while waiting for bumenatide. Would it matter which one is started first? Thanks!Jolenenoreply@blogger.comtag:blogger.com,1999:blog-655962722302095847.post-57687310662109096122017-06-09T15:35:57.587+02:002017-06-09T15:35:57.587+02:00Sorry Peter, my comment is not correct, I didn'...Sorry Peter, my comment is not correct, I didn't realize that this formula is used by film developers.<br />Instant coffee is supposed to be 100% natural.<br />Some chips, flour, bread products may contain potassium bromate as a food additive, which then theoretically is conveted into potassium bromide.<br />I don't know what is going on with coffee.Anonymoushttps://www.blogger.com/profile/16138974464162606874noreply@blogger.comtag:blogger.com,1999:blog-655962722302095847.post-26370155200815762812017-06-09T13:07:45.872+02:002017-06-09T13:07:45.872+02:00Peter, I use classic nescafe instant coffee by nes...Peter, I use classic nescafe instant coffee by nestle with Bumetanide. I read on wikipedia that some recipies include potassium bromide as a fog-reducing agent. Do you know if there is any potassium bromide in nescafe nestle? I though, if actually there is any, this may add the extra benefit I see with this combination.Anonymoushttps://www.blogger.com/profile/16138974464162606874noreply@blogger.comtag:blogger.com,1999:blog-655962722302095847.post-42712176314467039762016-12-09T13:59:06.200+01:002016-12-09T13:59:06.200+01:00Tyler, thank you very much for your attempt to ans...Tyler, thank you very much for your attempt to answer my question.<br /> I found the "not recommended for Parkinson's" statement on wikipedia.<br /><br /> I needed this information as I am trialling Baclofen for the second time with mixed results. He sometimes acts as if his dopamine is blocked and thought I should investigate it a little bit further.<br /><br />I also found this article which might explain some things:<br /><br />The gamma-aminobutyric acid type B (GABAB) receptor agonist baclofen inhibits morphine sensitization by decreasing the dopamine level in rat nucleus accumbens<br />Zhenyu Fu†, Hongfa Yang†, Yuqiang Xiao, Gang Zhao and Haiyan HuangEmail author<br />†Contributed equally<br />Behavioral and Brain Functions20128:20<br />DOI: 10.1186/1744-9081-8-20© Fu et al.; licensee BioMed Central Ltd. 2012<br />Received: 24 August 2011Accepted: 6 May 2012Published: 10 July 2012Anonymoushttps://www.blogger.com/profile/16138974464162606874noreply@blogger.comtag:blogger.com,1999:blog-655962722302095847.post-46064299776041589742016-12-08T23:32:22.195+01:002016-12-08T23:32:22.195+01:00This comment has been removed by the author.Tanyahttps://www.blogger.com/profile/01489962611979985947noreply@blogger.comtag:blogger.com,1999:blog-655962722302095847.post-39864249696448411412016-12-08T23:13:28.222+01:002016-12-08T23:13:28.222+01:00I would assume that is because Parkinson's dis...I would assume that is because Parkinson's disease symptoms are typically treated with L-Dopa and/or Carbidopa to restore the lost dopamine production from the ventral tegmental area which is one of the first areas of the brain to essentially die, thereby leading to further downstream dopamine dysfunctions including dystonia.<br /><br />As far as preventing Parkinson's from fully manifesting, the most recent research I have come across has been on identification and prevention. A paper I read a few days ago suggested that oxidative stress (everyone's favorite neurodegenerative buzzwords) seemed to be the core problem that led to cell death (sound familiar?). Other hypotheses ranged from an excess of glutamate or an excitation/inhibition imbalance in the infected areas of the brain (infection in the sense of the abberrant PD protein a-synuclein spreading from neuron to neuron).<br /><br />Off the top of my head I don't know why Baclofen is "not recommended" for Parkinson's disease, though I would suspect some have investigated its use for decreasing neuron hyperexcitability and hopefully slowing the disease's progression that way.<br /><br />But to answer your question I do not know at this time why Baclofen is "not recommended" for Parkinson's disease.Tylernoreply@blogger.comtag:blogger.com,1999:blog-655962722302095847.post-44103806912387034262016-12-08T22:55:44.796+01:002016-12-08T22:55:44.796+01:00Well the strange thing about drug policy here in t...Well the strange thing about drug policy here in the United States is that you cannot even import Picamilon now as it is classified as only for research use now.<br /><br />Also, Niacin+GABA is not the same thing. The use of Picmilon according to its reported method of action is that because GABA itself crosses the blood brain barrier very poorly, the niacin bound to the GABA helps the GABA get an escort into the brain. Once in the brain it is thought that Picamilon then hydrolyzes back into nicacin and GABA. Nevertheless, there is some relatively recent research now that suggests that oral GABA supplementation might increase brain GABA levels directly which contradicts past research suggesting GABA does not easily cross the blood brain barrier.Tylernoreply@blogger.comtag:blogger.com,1999:blog-655962722302095847.post-56952389874505429772016-12-08T19:28:11.992+01:002016-12-08T19:28:11.992+01:00Tyler, Picamilon is still sold in Europe, but it i...Tyler, Picamilon is still sold in Europe, but it is also known as nicotinoil gaba, perhaps with a combination of niacin and gaba could be obtained something similar to Picamilon?<br />ValentinaAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-655962722302095847.post-67708953644989357832016-12-08T18:59:01.209+01:002016-12-08T18:59:01.209+01:00Agnieszka and Peter, the first thing I thought whe...Agnieszka and Peter, the first thing I thought when discovered tizanidine by chance,was "this was made for my son", he responded incredible well with only a single dose of 2 mg at bedtime. Today I started to add 1 mg at midday and I plan to give him 1mg, 1mg, 2 mg, divided during the day.Great result for now. My son's greatgrandfather had MS and this is an antecedent that I don't forget. He shows both hypotonia and movements with hypertonia.<br />ValentinaAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-655962722302095847.post-81026163238848763982016-12-08T17:54:53.748+01:002016-12-08T17:54:53.748+01:00Clonidine is another drug that inhibits glutamate ...Clonidine is another drug that inhibits glutamate release and is used in ADHD and sometimes autism.<br /><br />Guanfacine is yet another drug known to inhibit glutamate release and yet again is an ADHD drug.<br /><br />Guanfacine shown safe and effective in autism treatment<br />http://news.emory.edu/stories/2015/08/guanfacine_for_asd/index.html<br /><br />These two drugs and tizanidine are all α2 adrenergic agonists. There are interactions with other drugs like verapamil.<br /><br />Definitely an interesting line of thought.Peter Lloyd-Thomashttps://www.blogger.com/profile/10173383229834614994noreply@blogger.comtag:blogger.com,1999:blog-655962722302095847.post-14392285239077237272016-12-08T17:22:19.470+01:002016-12-08T17:22:19.470+01:00I found it interesting that tizanidine was one of ...I found it interesting that tizanidine was one of the drugs recommended in autism long ago by dr Chez in his book:<br /><br />https://books.google.pl/books?id=iRE4BAAAQBAJ&pg=PA174&lpg=PA174&dq=tizanidine+autism+chez&source=bl&ots=ZeCV0pgaO2&sig=HXngTSo74itph0615mVHzB87eEk&hl=pl&sa=X&ved=0ahUKEwi5qOay9OHQAhWBBywKHWs0DBwQ6AEIKzAC#v=onepage&q=tizanidine%20autism%20chez&f=false<br /><br />It seems like he used it quite often. In another paper by him tizanidine safety and pediatric dosing is discussed.:<br /><br />“tizanidine should be started at a dose of 1 and 2 mg at bedtime in children aged <10 and >10 years of age, respectively, with a maintenance dosage of 0.3-0.5 mg/kg/day divided four times daily”<br /><br />Tizanidine has been suggested to “inhibit glutamate release”, so do you think that tizanidine response may indicate that other drugs targeting E/I imbalance could be helpful: bumetanide, low dose clonazepam, Diamox (or KBr)? <br /><br />Valentina, do you still give tizanidine to your son with good effect?Agnieszka Wroczyńskahttps://www.blogger.com/profile/04738535364585304041noreply@blogger.comtag:blogger.com,1999:blog-655962722302095847.post-84951523637249126542016-12-08T12:49:35.740+01:002016-12-08T12:49:35.740+01:00This is an interesting survey on Phenibut & ot...This is an interesting survey on Phenibut & other Nootropics: http://slatestarcodex.com/2016/03/01/2016-nootropics-survey-results/ <br /><br />From personal experience it can have a tremendous effect and from what we know of the action could be of great help, but must be used very carefully. <br /><br />Another compound on that list, tianeptine, has a much safer profile and could be of use for a certain subset of children with ASD..Emhttps://www.blogger.com/profile/02924636442485818957noreply@blogger.com