tag:blogger.com,1999:blog-655962722302095847.post9087133300829479502..comments2024-03-29T10:24:53.156+01:00Comments on Epiphany: Verapamil or Rezular (R-verapamil) for Irritable Bowel Syndrome (IBS)?Peter Lloyd-Thomashttp://www.blogger.com/profile/10173383229834614994noreply@blogger.comBlogger22125tag:blogger.com,1999:blog-655962722302095847.post-91210149015756985132023-08-25T18:43:45.451+02:002023-08-25T18:43:45.451+02:00Interesting information on functional diarrhea. Ta...Interesting information on functional diarrhea. Taking a PPI or H2 blocker can help with it.<br /><br />https://pubmed.ncbi.nlm.nih.gov/10505731/<br /><br />Stephen Unknownhttps://www.blogger.com/profile/04570315027088928366noreply@blogger.comtag:blogger.com,1999:blog-655962722302095847.post-30218169443507019052018-05-03T14:25:39.012+02:002018-05-03T14:25:39.012+02:00Peter, thank you very much for the reply.Peter, thank you very much for the reply.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-655962722302095847.post-35849657262975125282018-05-03T11:52:03.019+02:002018-05-03T11:52:03.019+02:00Your gene encodes the calcium channel that Verapam...Your gene encodes the calcium channel that Verapamil blocks. So if his mutation causes too may of these ion channels to be produced, Verapamil would seem the perfect solution. If his mutation causes too few of these ion channels then Verapamil would have a negative effect.<br /><br />I would start with a very small dose, say 10 mg, just once. Then observe what the effect is. If there is any negative effect then you stop.<br /><br />I think you are more likely to see a good effect.<br /><br />Verapamil only remains in your blood for a few hours. I give it 2 or 3 times a day but there are some delayed release products in some countries.<br /><br />In my son who is twice the weight of your son, he is having 80 mg spread across the day (not all in one dose!).<br /><br />Because your son has this mutation, his optimal dose may be different. Whoever did the genetic test really should be advising you now about what to do. Peter Lloyd-Thomashttps://www.blogger.com/profile/10173383229834614994noreply@blogger.comtag:blogger.com,1999:blog-655962722302095847.post-28533260825516379042018-05-03T11:22:09.030+02:002018-05-03T11:22:09.030+02:00Hi, Dear Peter.
Thank you for this blog! My son is...Hi, Dear Peter.<br />Thank you for this blog! My son is 7 years old. Weight 28kg. Last week was his genetic analyses. My son found a mutation in the gene cacna1C rs752000790. My son had a regression after of the virus with hyperthermia. Now he has autism, ADHD, poor sleep and many days not pooping. I'd like to try verapamil, but do not know the dose. What dose is needed for 7years old and 28 kg of weight? Thank you very much!Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-655962722302095847.post-41585812314348240492018-04-23T10:33:12.177+02:002018-04-23T10:33:12.177+02:00Audrey, there is a French study into the dose rela...Audrey, there is a French study into the dose related effect of melatonin in autism (MELADOSE) but they appear to have never published the final results.<br /><br />They trialed 2, 4 and 10 mg of Melatonin one hour before bedtime. Maybe give Calvin all his melatonin in one go, at bedtime. <br /><br />Here is one of my old posts on Melatonin.<br /><br />More Melatonin!<br />https://epiphanyasd.blogspot.com/2016/05/more-melatonin.htm<br /><br />Many people report that Melatonin supplements are highly variable (they contain less melatonin than it says on the label).<br /><br />You might see how long the GI effect of Verapamil lasts, maybe you do not need it every day.<br /><br />Maybe a weak Cav1.2 blocker would give the GI effect without the sleep effect. Olive leaves are a known natural Cav1.2 blocker and you can buy an extract of them. <br />Peter Lloyd-Thomashttps://www.blogger.com/profile/10173383229834614994noreply@blogger.comtag:blogger.com,1999:blog-655962722302095847.post-3413384738118949362018-04-23T00:44:17.565+02:002018-04-23T00:44:17.565+02:00Thanks peter! Yes I’m only giving once a day and h...Thanks peter! Yes I’m only giving once a day and he is very sensitive to any drug. Do you think this will be something he adjusts to eventually? It’s so hard because we are seeing relief of one symptom but i hate to create a new issue... Calvin is only 40 lbs— and a slow and sensitive drug metaoblizer... they seem to stay in his system longer ... how much melatonin would be too much do you think? I gave him 2.5 mg at bedtime and then again in the middle of the night? What dose shows GI relief? Audrey Davidownoreply@blogger.comtag:blogger.com,1999:blog-655962722302095847.post-79151606208694892182018-04-22T20:12:22.018+02:002018-04-22T20:12:22.018+02:00Audrey, sleep issues are listed as a known side ef...Audrey, sleep issues are listed as a known side effect of Verapamil, affecting less than 1% of Verapamil users.<br /><br />Your dose really is tiny, so it is odd you have any side effect.<br /><br />It turns out that the calcium channel blocked by Verapamil (Cav1.2) plays a key role in the regulation of sleep. There are two quite recent papers on this.<br /><br />CAV1.2 calcium channel is involved in the circadian regulation of sleep<br />https://www.sciencedirect.com/science/article/pii/S1389945713016249<br /><br />Cacna1c (Cav1.2) Modulates Electroencephalographic Rhythm and Rapid Eye Movement Sleep Recovery<br />https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4531405/<br /><br />You could try only giving Verapamil at breakfast. Verapamil does not stay in your body very long and it might then not affect sleep.<br /><br />You might find melatonin itself might help his GI issues, without the use of verapamil, but then you will make him sleepy. There are studies on the use of melatonin for various GI problems. So this is worth considering.<br /><br />It does tell you that has Calvin has unusual calcium channels, or his blood brain barrier may be more permeable than is typical. You have said before that he is very sensitive to any drug.<br />Peter Lloyd-Thomashttps://www.blogger.com/profile/10173383229834614994noreply@blogger.comtag:blogger.com,1999:blog-655962722302095847.post-10365697408588862062018-04-22T17:27:26.795+02:002018-04-22T17:27:26.795+02:00So, Calvin is clearly a responded to Verapamil— at...So, Calvin is clearly a responded to Verapamil— at least in the GI dept. but it seems the very tiny dose I’ve been giving him is now causing night waking... sigh. So it’s as if I’ve traded one problem for another. :( <br />Any thoughts on why this is happening— I’m guessing the melatonin receptors have something to do with it? <br />What this tells us about the larger picture? <br />And what I can do about it? Thank you guys!Unknownhttps://www.blogger.com/profile/07290276102260430780noreply@blogger.comtag:blogger.com,1999:blog-655962722302095847.post-70539860781867427202018-04-22T14:55:00.945+02:002018-04-22T14:55:00.945+02:00Audrey, that is great and thanks for leaving your ...Audrey, that is great and thanks for leaving your comment in this specific post. So we can again see that L-type calcium channels blockers really do relieve GI problems in some people.<br /><br />A while back a parent revealed that the reason they used Memantine (thought of as an NMDAR blocker) in their child with ASD was that is resolved GI problems. Memantine is also a mild blocker of L-type calcium channels.Peter Lloyd-Thomashttps://www.blogger.com/profile/10173383229834614994noreply@blogger.comtag:blogger.com,1999:blog-655962722302095847.post-1230896772306216942018-04-22T07:07:07.566+02:002018-04-22T07:07:07.566+02:00Peter finally got my hands on some verapamil — com...Peter finally got my hands on some verapamil — compounded in a suspension so I can easily tórrate... I have give my son the equivalent of 1.75 mg a day .... a very tiny amount... and his gut has been amazing... it’s quite incredible. I’m not sure we are seeing theanxiety or allergy relief at the tiny dose, but the GI relief at such a tiny dose was quite astounding!!! Audreynoreply@blogger.comtag:blogger.com,1999:blog-655962722302095847.post-67953369255796338362018-02-28T18:39:53.729+01:002018-02-28T18:39:53.729+01:00Ling, I will soon add Agmatine to the Polypill lis...Ling, I will soon add Agmatine to the Polypill list, it does have some effect on glutamate signaling according to research, but I think the benefit to Monty relates to nitric oxide.<br /><br />There is research showing that an NMDA dysfunction could be treated via GABAb using Baclofen. So things are inter-related.<br /><br />Glutamate excitotoxicity is very important. I made a graphic to show this:-<br /><br />https://epiphanyasd.blogspot.com/search/label/Excitotoxicity Peter Lloyd-Thomashttps://www.blogger.com/profile/10173383229834614994noreply@blogger.comtag:blogger.com,1999:blog-655962722302095847.post-85837630677332450732018-02-28T18:26:25.571+01:002018-02-28T18:26:25.571+01:00Kritika, here is a link to that comment:
https://...Kritika, here is a link to that comment:<br /><br />https://epiphanyasd.blogspot.com/2017/04/different-types-of-excitatoryinhibitory.html?showComment=1519724714707#c3882505729877411958Peter Lloyd-Thomashttps://www.blogger.com/profile/10173383229834614994noreply@blogger.comtag:blogger.com,1999:blog-655962722302095847.post-68460837673220512002018-02-28T15:16:10.646+01:002018-02-28T15:16:10.646+01:00Peter,
Is there a way of getting back to an older...Peter,<br /><br />Is there a way of getting back to an older comment? I was looking for Agneizkas comment which she had posted yesterday, referring to a paper mentioning reaction to drug excepients in individuals with mast cell disorders.<br /><br />ThanksKritikanoreply@blogger.comtag:blogger.com,1999:blog-655962722302095847.post-31533180134877212052018-02-28T14:06:26.128+01:002018-02-28T14:06:26.128+01:00Reading this blog you get the impression that the ...Reading this blog you get the impression that the GABA system is the main malfunctioning one and that in some cases you might also have a hypo- or hyperfunctioning NMDA/glutamate system on top of that. This can very well be the case.<br />But as I have recently dived into the world of malfunctioning glutamate receptors and signalling I see a very strong pattern of this being the primary cause of excitotoxicity, making GABA a secondary dysfunction. Maybe I am blinded by the things I am reading and not seeing the whole picture. But even NAC, here mostly mentioned as a treatment for oxidative stress, does things with glutamate receptors.<br /><br />What do you think Peter? There is nothing in Monthys PolyPill targeting glutamate signalling, but I think I remember that you tried something for hypofunction with some positive result (cinnamon?)<br /><br />/Ling<br />Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-655962722302095847.post-39628080779227733292018-02-27T22:13:25.604+01:002018-02-27T22:13:25.604+01:00I have been reading personal accounts on bipolar w...I have been reading personal accounts on bipolar websites of people being able to manage things and preventing going in to manic states by knowing their triggers, avoiding stress, and doing whatever it takes to get to sleep. From what I am reading so far it varies as to what supplements can help. I don’t have any experience yet with using supplements to avoid going in to full manic state because my son still is on his medication regimen and will continue for about 8 more weeks. He is doing so well! We are very pleased. The prescribing doctor is wonderful - very caring, positive, and a brilliant man. He has of course his MD but also quite a few PhDs in neuroscience and pharmacogenomics. My son is not on an anticonvulsant- but he is taking a very low dose of olanzapine, low dose lithium and a low dose of SNRI. I also give melatonin because I read some studies that it protects against induced metabolic side effects from having to use an antipsychotic. His doctor also prescribed a pharmaceutical grade B complex with minerals and he takes an Omega 3 with higher EPA to DHA ration every day. All of this has really helped him. But we start to wean off in 8 weeks and we will see how things go then. I really think for my son, knowing his triggers and avoiding stress will really help with prevention. Tanyahttps://www.blogger.com/profile/01489962611979985947noreply@blogger.comtag:blogger.com,1999:blog-655962722302095847.post-24819709690607543682018-02-27T21:50:00.004+01:002018-02-27T21:50:00.004+01:00Tanya,as if you had guessed my son doesn´t stop ta...Tanya,as if you had guessed my son doesn´t stop talking and singing, it is almost a week since he is unstoppable for at least 1 or 2 hours a day.Today he added dancing. His birthday is on april 6,soon will be 12. I know that the pattern of evolving to manic depression is unpredictable,but could be preventable? I can´t believe that I will have to return to valproate.Can not take lithium orotate with bumetanide wich it is a shame.How is your son?<br />ValentinaAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-655962722302095847.post-1516923806390752202018-02-27T19:45:38.558+01:002018-02-27T19:45:38.558+01:00Valentina oh wow! What a meal ! And all things tha...Valentina oh wow! What a meal ! And all things that stimulate dopamine - eggs chocolate and even the oregano. I’d say maybe it was a little manic moment. Hopefully it doesn’t get too out of hand - maybe you could try taurine if he needs to be reined in? Or lecithin? My son had those euphoric moments - he was actually a lot of fun at these moments, but now I see them for what they really are and what it can lead to. During those episodes he talked a lot, and very loudly. He sang a lot too. He started having these episodes when he was younger beginning in puberty then the depressed and increased anxiety episodes started a few years ago when he was 15. Then last year started the intense manic episodes.. <br />it is amazing what they can do in those euphoric/hypomanic moments . Tanyahttps://www.blogger.com/profile/01489962611979985947noreply@blogger.comtag:blogger.com,1999:blog-655962722302095847.post-34048378946604776022018-02-27T19:20:05.732+01:002018-02-27T19:20:05.732+01:00All I can say is I hope he shared the omelette wit...All I can say is I hope he shared the omelette with you. That is a lot if eggs.Tylernoreply@blogger.comtag:blogger.com,1999:blog-655962722302095847.post-35223919542375718662018-02-27T14:29:15.835+01:002018-02-27T14:29:15.835+01:00Hello. Not straightly related to topic, but I thin...Hello. Not straightly related to topic, but I think neurotensin could be a worth of investigation. I suggest this to you, Peter and folks, as you are able to do this type of synthesis from the scientific literature. So far what I have been reading, neurotensin is elevated in autism spectrum disorders and playing a key role in mast cell activation. Besides, neurotensin has connection to dopamine, NMDA signalling, GABA, calcium channels, gut and whoknows what else. I did not found you writing anything about it, so I suggest here the topic.<br /><br />Keep up the good work!Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-655962722302095847.post-16806409884382899162018-02-27T12:46:32.815+01:002018-02-27T12:46:32.815+01:00Hi Tyler, yesterday I was looking for an old comme...Hi Tyler, yesterday I was looking for an old comment from december, I think it was from AJ, about glucosamine and its effect on electrical activity, I wanted to know wich form was used in the study. I didn´t find it, but what I did find was a funny comment from you that I have missed in the vastness of the blog.Incredibly,I had just recently talked with Tanya about this not so nice situation that happens with some comments, I spoke about mine. Anyway,better late than never, my son got the message and finally met Al.W. Yankovik. He really made him laugh, specially with some characters,as he said,¨the fake K.Cobain¨. He also couldn´t stop laughing with Beat it/Eat it, when in the end Al Weird takes a digestive pill!.I tell you that a few nights ago, we had our Final Countdown without knowing, when my son woke up at 4 o´clock ,closed night,and decided that was time to make himself an omelette. He took 10 or 12 eggs from the refrigerator,a pack of oregano and a bottle of olive oil. It was a sticky mess when we waked up early in the morning, as you can imagine, but the omelette was prepared, he broke all the eggs and I don´t know how he managed to beat them, of course with tons of olive oil and tons of oregano.I think it was a kind of Hypomanic episode.All was ok for him,he was energetic and excited,no depression at all. He said: Yes, it is a mess but I was hungry.Apart from that, I found a chocolate carton box, that was already empty ,cut into thousands of small pieces that he did it with his hands, as if it was the result of an euphoric moment.What do you think?<br />ValentinaAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-655962722302095847.post-52673683898491019202018-02-27T12:12:33.307+01:002018-02-27T12:12:33.307+01:00Helma & Walter, Lexapro (Escitalopram) is an S...Helma & Walter, Lexapro (Escitalopram) is an SSRI antidepressant. It is supposed to have milder side effects than other SSRIs. Some people take this type of drug long term without any problems and find them helpful, but some other people use them for a few months and stop either because they find little benefit or they suffer side effects. You will find some people with Asperger’s very anti SSRIs and some pro.<br /><br />Concerta/Ritalin increases the amount of dopamine and norepinephrine and so helps some people diagnosed with ADHD.<br /><br />You do have to be aware which psychiatric drugs may lead to tardive dyskinesia, which is very hard to reverse, as our reader from Uruguay has discovered.<br /><br />I personally think psychiatric drugs are over used, but your son clearly has some serious issues, so if they help him, why not continue.<br /><br />To your questions, <br /><br />1. ADHD does overlap genetically with ASD, so it is very likely that some people diagnosed with ASD might respond to Concerta. In many people with ASD I think their “AD” is caused by an excitatory/inhibitory imbalance and Concerta will not help this. I used to know a boy at our school who was diagnosed with ADHD, but it appeared to me that he had ASD. These diagnostic labels have great limitations.<br /><br />2. You should always ask your doctor about drug interactions. They are well documented, for example Escitalopram does have some interactions. If your doctor agrees, there does not seem to be any reason why you should stop Concerta when you trial bumetanide.<br /><br />3. I doubt Escitalopram will have a profoundly beneficial effect. I think you would need to find the cause of your son’s problems to have a big effect. I would look for clues in any comorbid medical conditions he has, or are present in the extended family, even seemingly trivial but odd things. <br /><br />If you have a helpful GP, I would ask him about a trial of Daxas/ Roflumilast 100 mcg for a week or two. You do not want your son to start smoking, but a α7 nAChR agonist might also be worth considering.<br />Peter Lloyd-Thomashttps://www.blogger.com/profile/10173383229834614994noreply@blogger.comtag:blogger.com,1999:blog-655962722302095847.post-47999925788079006432018-02-27T01:37:41.646+01:002018-02-27T01:37:41.646+01:00Dear Peter, we're from the Netherlands and avi...Dear Peter, we're from the Netherlands and avid readers of your blog for a couple of years since we found out our son of now almost 13 has ASD (avg. IQ, NVLD, PPD-NOS) paired with severe behavioural issues (tantrums), which forced us to have him in hospitals and institutions. Now he's back home, because the 'peer' environment in institutions is not great. <br /><br />At te start we selected the best ASD hospital in NL specifically for the reason that they're leading the Bumetanide research, which we read about in your blog. Unfortunately we couldn't take part in the program and at the moment Bumetanide is still not approved, so also the instituation where our son stayed wouldn't start with it.<br /><br />Now he's home we can start the experiment with Bumetanide ourselves under guidance from a GP. However in the meantime, at one of the institutions we started with Concerta, which seems to help quite a bit (but not enough). Now we're in doubt whether to switch to Bumetanide (trial period) for which we didn't get the chance before.<br /><br />Nowhere on your blog I can find concerta (or generic MPH) as an applicable medication, but we do know a lot of parents of ASD children (PDD-NOS with behavioural issues) who claim they benefit enormously from it. Probably (or obviously) the concerta eases the often comorbid ADHD, but you don't seem to recommend it.<br /><br />Question 1: Don't you believe in some positive effects of concerta (MPH) for ASD?<br /><br />Question 2: Could we try the Bumetanide while continuing the concerta (MPH) or should we stop first and then try Bumetanide?<br /><br />Question 3: From one of the leading researchers that observed our son we also got the hint (if all else fails) to try 'escilatopram' based on new research in this field of ASD and brain elasticity. Do you have experience or knowledge about this perspective and maybe an opinion?<br /><br />Dear Peter, thanks for all the knowledge and experiences that you share with all of us and my wife and me we're educated and experienced by now, so we don't take your word as the 'holy grail', but we're very interested in your opinion on our questions, so if you have the opportunity to answer that would be much appreciated! <br /><br />Kind regards,<br />Helma & WalterAnonymousnoreply@blogger.com