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  1. My 13yo got her diagnosis this year after struggling with tics, OCD, and anxiety for most of her life. Now that we're on the road to healing and a better understanding of what's going on, I have a lot of questions about flare-ups. We are avoiding many different foods that showed up as reactive on a food intolerance test, but something caused a huge flare about a week ago and it hasn't quite waned away yet. My questions are: Can you usually tell what causes a flare in your child? What types of things cause flares, and how long do they last? What do you do when you notice a flare? Can you give certain supplements or vitamins or other during a flare to reduce the duration? What else should I know about flares? Its been a discouraging week. Vocal and Motor tics that haven't been around for months are suddenly back with a vengeance...I *think* I know what caused it, but why is the flare lasting so long if the exposure was a one-time thing? (full disclosure, it seems like it was from a dairy-free flavored iced coffee that she drank)
  2. Does anyone have any insight or experience with a strep-positive PANDAS kid getting frequent nose bleeds? It only happens at night while she's asleep. I have her using a nasal spray and a humidifier, but so far I can't tell if those two things are helping. Her neurologist has no advice except to try a humidifier and take her to an ENT if that doesn't work (I assume the ENT won't know anything about PANDAS). If strep can live in the nose, could that cause nose bleeds? One of her motor tics is to forcefully blow air out of her nose...could that be her body trying to expel what it perceives to be a bacterial threat?
  3. If anyone has read my long thread on what helped my son all those years ago, you know Magnesium was key in calming his then very severe tics. (thread is linked on my profile page) Fast forward 23 years and a senior relative who also has TS tried the Natural Calm powder (ionic chelated magnesium citrate) more for digestive/laxative purpose- and had an immediate calming of some tics that had resurfaced! It just reminded me again of how dramatic an effect there was on reducing my son's TS tics after adding a good magnesium supplement. I understand not everyone responds the same way, but sure is worth a try if you are looking for something that may just help
  4. I had not seen this Yale School Of Medicine article before today 3D Organoid Models Show Brain Mechanisms Of Tourette Syndrome
  5. I came across this scholarly article via PubMed while researching something, and was pleased to see it. There are many studies and articles on this topic, but often conventional research & medicine see it more as a "fringe" idea, and also often overlook the volume of anecdotal evidence there is now so freely available that supports this premise. My own family is a proof positive "anecdotal" story of the vital role of correct dietary nutrition (with nutritional supplementation where needed) in helping to treat neurology without, or with less, pharma drugs and their potential negative side effects. Because there is Crohn's Disease as well as TS spectrum for my son, we are also able to see that Brain-Gut connection so clearly too. I continue to be amazed at how simple changes in diet and supplements can often have such profound impact on all those disorders, and how connected they are. My advice from our experience has always been - Do your own research and keep that journal on what aids waning, or triggers waxing of tics, or other symptoms. You will be amazed at how what goes into our mouths can either really benefit, or really mess with our Neurology, as well as our GIT. And for those already dealing with a neurological issue - the impact seems magnified. Here is the 2021 article I read today that gives a summary & some references. Dietary nutrition for neurological disease therapy 🙂
  6. **PLEASE NOTE that this product has been discontinued since 2017 so the thread has been closed to avoid any confusion** I have been lurking around these forums for about 10 months now. I just signed up now because I wanted to report our experience using Repreeve. I guess my story is no different from anybody else's here. To summarize it is a story of misery, desperation, helplessness, worry, but also determination and perseverance, driven by the deepest love for my DD (who just turned 10). She started having very mild tics when she was in kindergarten. I was sent home multiple times by many, many doctors. She started getting worse in April (2015) when she was 9. She had different tics that continually changed from one to another (head bobbing, abdominal contractions, eye blinking and rolling, neck stretching, and seizure-like tics that were very scary, etc.). We tried diet intervention according to what she tested sensitive to, heavy supplementation, and almost everything else in between, which could be material for a whole book! In November, her tics had changed from motor to vocal ones. She could no longer be under the radar at school. They were constant and SUPER loud. We were so desperate. She had to be kept home from school for an entire month, and she was starting to feel very sad and isolated. Since I have been on "research mode" for the past 10 months, I came across Sheila Rogers' post on those new patches (thank you so, so much Sheila!), and out of desperation I decided to order a sample (which by the way was free). I am very happy to report that even though my daughter's tics are not 100% gone, she is finally doing much better, and has been able to return to school. I am sharing this story to encourage you guys to ask for, and use their sample. Who knows? It might bring some relief for your child, and you have absolutely nothing to lose.I really didn't expect the patches to work for my daughter because she is a PANDAS/PANS child (by the way 9 mos. on antibiotics never made the tics go away either). I also started DD on the Feingold diet on Dec 31 which I know is also helping, but the tics started to diminish while wearing the sample of the patches (5 days before starting the diet). Since she is a PANDAS/PANS kid, the patches are not obviously the only thing we are using around here. So, I do not know if the tics were meant to diminish on their own, but for me, it is too much of a coincidence the almost immediate relief my daughter enjoyed after 9 months of being completely annoyed by her tics. She says the patches are diminishing her urges to tic. I just hope this post can at least help one child and his/her family out there. Good luck everyone!
  7. Stimulating research gives new treatment hope for Tourette Syndrome This interesting research reminded me of how my son's CBT therapist suggested an elastic band on the wrist and gently snapping it when tics (especially Tourettic OCD) became invasive. I recall my son finding it very calming, even though I found it strange at the time. The rationale in this research seems to offer an explanation for the effect. Anything that can relieve tics without medications is always worth investigating further!
  8. Just an FYI reminder that, in addition to the main Latitudes/ACN website that is full of valuable info, Stop Tics Today is an excellent resource administered by Sheila Rogers, with a stellar advisory board.
  9. So many people ask this question, and our admin Sheila Rogers has a really good article on the main section that covers a lot about TS & Tics. What is Tourette Syndrome? – A Comprehensive Overview If you have more questions, or comments, here is a thread for open discussion on this topic.
  10. Hi, Sending a request to anyone that has tried l-carnitine as a remedy for tics. My daugher, who is 18, has had tics since she was four. The frequency has come and gone, with me trying the recommendations on this forum over the years. We never used any prescribed drugs due to unknown side effects. We stopped the supplements when she entered high school as she used behavioural therapy to help control them when in school and with friends. The only thing she has done in high school is acupuncture (though not lately) and a tens machine for medial nerve stimulation. These two treatments kind of helped, but she has not used them lately. The frequency of her tics have increased significantly, which has brought me back to the forum and for a “what has worked” with other parents/kids. As I write this, we are on a family vacation and do not have access to our tens machine. My daughter has scheduled an acupuncture session when we return. One thing when browsing the forums is the supplement l-carnitine. I believe chemar has used this with successful results. Wanted to know what is the relationship with this supplement to brain function? Searched the internet and could not really find an answer to this. This was one of the supplements that I never tried and is thinking of using. Thanks
  11. My daughter has tourettes. She's 16 and just over the last few months has developed motor and vocal tics that have taken away her ability to enjoy her teenage life. It's been a nightmare. We are seeing a natural doctor and chiropractor who has helped us find her food sensitivities, chemical sensitivities and metal sensitivities. Today I noticed that she has a severe tic attack while I'm driving her in our car. She starts talking about feeling nauseous, and that she can feel them starting in her belly. From there her tics become out of control, not that they're ever in control. It takes a good 25-30 minutes after she gets out of the car for her body to settle down. Has anyone else experienced this with their child with tics? What could possibly be causing these tic attacks in our 2003 Ford Explorer? Any help is greatly appreciated.
  12. My son who is 11 has had Tourette's since he was 4. Both vocal and motor tics and typical waxing and waning symptoms. So far it's been mostly mild at times with only a few severe spells. We're in the worst period ever since he now has a screaming tic for the last several weeks. It's not going away and he can't go to school or be in public right now until it gets better. I am very well-informed (in addition to a mom I happen to also be a physician) and have tried nearly everything out there over the years as far as supplements, diet changes, nutrition, neurofeedback and environmental therapy. Mostly his tics seem to "wane" when they choose to no matter what so it's hard to determine if treatments are working or if it's the natural cycle of improvement. This spell is severe and has lasted much longer than any others and I am looking to more advanced/serious treatments. I specifically would like to know if anyone has experience with Dr. Jeff Lazarus in California? Everything I've read about his treatment is positive on this site and on other reviews. I've talked with him already and he seems to really believe he can help. If he could it would be amazing right now and for the future for my son. The problem is we live in Louisiana and will have to travel there for a minimum of a week. This is expensive. Not to mention his therapy costs THOUSANDS of dollars for just the one week. Based on his estimate it would be over $5,000 up front and that doesn't even include any travel expenses. Also he requires both parents to be present initially which adds to cost and to stress for my son since we're divorced. AND travel would be a nightmare - I can't imagine the plane rides with him screaming every 20-30 seconds. Bottom line - I need to decide if it's worth the stress and the time and the cost. I'm willing to do anything but I don't want to invest this much foolishly either. Thoughts from someone who has specific experience with this doctor or hypnosis in general and might have advice for me to help me decide to take the plunge? Thank you very much in advance. AprilP
  13. Hi 🙂 I get PMs from so many members who are desperately looking for guidance on this challenging journey to help their children. Apart from being able to share some of my personal experience, and to suggest searching the many helpful threads members have posted here over the years..... I cannot think of a better #1 resource than everything that is on the ACN/Latitudes homepage at https://latitudes.org/ I found the original Latitudes magazine many years ago as a desperate mom seeking answers to help my then 10 yo son, who was diagnosed with genetic Tourette Syndrome with very severe tics & OCD, and was negatively reactive to medications. It was a turning point in our lives, and I will forever be so thankful to Sheila Rogers De Mare for providing a portal to research alternative ways of treating tics & TS, and learning about the many factors involved in why children may tic, that go beyond just "genetic" TS. Fast forward all these years and my 30yo son is doing so well, with a full life and good job, while also using his artistic talents as a singer/songwriter, and enjoying a thriving social circle (outside of the current Covid restrictions). These are things that I confess I despaired he may never achieve during those early years on the TS journey, and I honestly attribute so much of this to the insights and resources I discovered here at Latitudes. He is testimony to the fact that there is healing hope for even very severe TS & tics beyond pharmaceuticals! These days there is so very much more available at ACN/Latitudes to help parents looking for solid foundations to base their quest to help their child(ren) heal naturally. Sheila's carefully researched books on are an invaluable resource https://latitudes.org/store/ while the comprehensive menu of conditions, and therapies,as well as articles by many acknowledged experts in this field, contain a wealth of information. I am writing this post as a testimonial, as I hope that the many visitors seeking guidance on these forums will also explore the main website, and discover answers to help their children heal more naturally. I am still here after all these years to "pay it forward" for the invaluable help I found at ACN/Latitudes. My prayer is always that others will find that same hope and encouragement here.
  14. Hi, My 4.5 year old son has suddenly developed tics. We dont have any family history as far as I know, and it is breaking my heart. It first started with nose itching and now that is gone and he either claps or runs around and claps. We have seen numerous neurologists and the diagnosis has been the same- transient tics. We had an EEG done and it was normal. The only advice I got from most is to wait and see. That is not my style. I have started reading the book on how to deal with tics in a natural way, started a 1 month electronics fast and now working on reducing sugar. My friend, who is a pediatric neurologist also recommended giving him adult dose of fish oil, zinc supplement, iron supplement and magnesium. I bought a gluten free, sugar free magnesium supplement but it is making his stool runny. Would appreciate any advice you have on magnesium supplements and overall insights. Also, we started him on a course of homeopathic medicine, about a month prior to tics, I was wondering if that is somehow was a trigger or tics could be a side effect of the medcine? Thank you, Restless mama.
  15. Hello - I 'm new and reading Natural Treatments for Ts & Ts. I am finally finding people whose experiences are like ours. My 12 yo has terrible tics. I believe meds are making them worse. Can anyone tell me how long the washout period is and what might help the demonic behaviors that go along with it? I realize I need to find some allergic / food triggers first before I try to convince the dr. Thank you.
  16. I've been dealing with tics since my childhood. I am 24 years old. I've tried tons of methods. I've found 2 good ways by myself to reduce tics. I have Neck moving right and left, breath out many times loudly and tighten my legs etc. So I've tried to push tics away, not responding any pressure any tics but made worse and then I've tried to direct my tics. Let me explain with my poor english. First tip; My goal is reducing "visibility". Because i'm tired stopping tics completely. When I feel the pressure to "breath out or neck moving"(more visible tics) i tighten my legs(less visible side). It's like guied the tics over my legs. I feel like the energy want to comes out so i let the legs do the job until feel relaxed. When I tighten my legs 2 or 3 second the pressure was gone and in public that would be less visible. Second tip; I've directed myself to do all tics "only" at home. I've worked on this about months. I've hold my tics in public or school. If I can't hold the tics anymore. I go to toilet or some place that I can be alone I release my tics and when i feel relaxed i move on. So when I get home I don't do over thinking about tics , I do tics so hard I've never stop any pressure, I do all tics and realesed myself. I am 24 , it took almost 18 years I've reduced %60 percent of my tics. Last of all being overweight and drinking too much coffee increase my tics so i walk 20 minutes everyday and drink coffee once a week.
  17. Hi all, my 10 year old daughter started having facial ticks a few weeks ago in the summer holidays apparently triggered by screentime. She moves her eyes to one side, opening them wide and head moves in the opposite direction to eyes - says her eyes feel like they need to stretch. We had a screen detox and the tic went away but has now come back apparently triggered by anxiety and an panic attack (first one ever). The eye thing started again and so arrived some facial twitching and excessive eye blinking. I've now found she also has an abdominal one where she moves her legs towards her and back when sitting/lying (looks like she needs the toilet or something). She also for about a year has this breathing thing where she takes very deep breaths saying she can't get enough air. I took her to docs who said this may also be a tic - just ignore and will probably go away. That's it. My daughter has suffered with an anxiety disorder since she was very young but it seemed to have mostly resolved until this. Just really worried that my daughter will not outgrow this and she has yet another obstical to overcome. I read that with transient tics that disappear it's only one tic at a time which has worried me. I'm concerned about other children bullying her because of it. She starts secondary school next year. I haven't been drawing attention to them and trying my best not to show my own worry about them. Advice and/or reassurance anyone? Thanks in advance
  18. Hi everyone I have been reading the posts here for almost a year now, which has been so helpful in many different ways. I finally found the courage to post and share our story. I will really appreciate the input of those who have had similar experiences. I have a 5-year-old daughter who developed tics around May 2018. Prior to that, I do not remember her having any tics, compulsions or repeated behavior of any sort. I will try to keep it brief. She had chickenpox in April 2018. Looking back, she started facial grimacing, touching cars, getting upset because she had to be the one to close the car door quite soon after chicken pox. I did not think much of it. At the beginning of May, she had an accident which resulted in nose trauma. By the end of May, it felt like, overnight she developed face stretching/squeaking noise/snapping jaws. I was devastated as the first thing that came up on the google search was Tourette. Her tics were constantly changing in the combination of multiple motor and vocal tics. We visited a couple of neurologists who all diagnosed her with provisional tic disorder and told me that there was nothing that could be done besides to just wait and see if they last for more than a year. That's when I remembered that when we visited my husband's dad and his half-sister, they had both vocal and motor tics. But they do not talk about it. When I asked if any of them had a diagnosis, his step-mum said that the daughter's tics started when she was young, they even had MRI done and were told to ignore them. I would say her case is quite mild (unless I saw her when she was in the waning period) because she is going through puberty and has simple motor and vocal tics. My father in law, more understandable, he grew up in the 70s and not many professionals knew about Tourette's or diagnosed it, they were just called tics. For that reason, I never entertained the thought of PANDAS as I thought this must be genetic and this was the card my child was dealt beside that her dad is tic free. Fast forward, her tics calmed down by end of October but really came back with vengeance by end of January. By the end of February, she was prescribed antibiotics for her UTI and 90% of her tics subsided. So, I thought, it won't heart if I take her to a neurologist (U.K Based) who is PP friendly. Dr. K told me that decrease in tics after antibiotics would suggest the possibility of PP and she ordered blood tests, nasal swab, throat swab, and perianal swab. She was also put on co-amoxiclav for a month, which reduced her tics farther, she only has throat clearing tic. Although, I am not getting my hopes up as it might just be a coincidence. However, I got the results today and they are the following: A.S.O Titers - 555.3 (normal range is <200) IgE - 73.9 (normal range is <48) Anti-DNase B - 393 U/ml Nasal Swab showed: Moraxella catarhhalis Streptococcus pneumoniae Throat Swab showed: Staphylococus aureus Perianal swabs showed: anaerobes So my question is that even if you have a family history of tic disorder can tics still be initiated by infections triggers? Or this is just a tic expression mediated by infections triggers which are commonly observed in Tourette's population. I am quite confused as they do not seem to differentiate between Pandas tics and Tourette's tics as most academic papers suggest that Tourette's kids have immune issues anyways. Anyone who has a family history of possible Tourette's but has had success with tics by treating infections would be much much appreciated
  19. So I haven't been on this board in a long time. Why? Because my two PANDAS are doing so great it is not a "thing" anymore. But I wanted to come back and offer hope and encouragement because most people on the boards are struggling and the success stories are off the boards living their lives. I have a (now 18 year old) who began with PANDAS/aspergers symptoms as a toddler. It got very bad- tics, ocd, hallucinations when he had strep, and absolutely zero social skills or awareness. What we did: turned out we had major mold in our house and did complete mold remediation. He was on Augmentin for years and that really cut back on the illness. He still struggled socially a lot, so the summer after 2nd grade we did Brain Balance. It was hard. It was not fun. But we did it hard core, taking away the left brain toys (tinu books, figures, legos, even books not related to school) and did the practice exercises an hour a day on non-center days. We tool him off gluten and dairy (I believe he is celiac but he can now do dairy). We gave a ton of vitamins and digestive enzymes because he was not growing and was predicted to be 5'1 as an adult. Within a few months after Brain Balance we saw some social awareness. It came gradually but the improvements snowballed. He is now a junior in high school who plays on the basketball team (He literally couldn't catch a beachball in second grade), was nominated for the homecoming court this year, has strong friendships, and is very happy, planning to study architecture in college. He is sweet and happy and doesn't remember most of the stuff when he was younger. He is very outgoing and makes friends easily. When his totally normal sister finished fifth grade we went to Disney and I noticed her having tics. I couldn't believe it. Yep, when we got home it turned out she had a raging strep infection with only tics and separation anxiety to show for it. ABX worked for a while, but she became withdrawn and started spending all of her time in her bed. In desperation, we flew to Dr T. Her numbers were borderline low, NO ASO numbers, and he told me she would never qualify for IVIG. Ironically the son I started off talking about had severe CVID. On paper he looked terrible and Dr T. wanted to do IVIG on HIM. Nope. We saw another Dr, Dr Jill Dickerson, in Georgia. She got my daughter covered for monthly IVIG mostly based on the fact that she had a strep infection that even four simultaneous (including IV) abx couldn't touch. (The herb cryptolepis got rid of it and she still takes a maintenance dose). So she has had 1.5 g/kg IVIG for a little over two years and we are weaning her off because she is healed. My now 15 year old is completely normal and is symptom free. (It took about 6-7 months of IVIG before tics were gone). Sorry for the lengthy post but I want to give someone the hope I was so desperate for. Your child can and will get better. Don't give up. And Brain Balance was a miracle for us (an expensive one) but I truly think it worked because we did it to the nth degree. Have Hope!!
  20. Has anyone tried tichelper.com yet? Interested to see if it's helping people. Thank you!
  21. Hi everyone, I am almost 25 and just got diagnosed with PANDAS a couple months ago. When I was six, I had Sydenham’s chorea and was put on prophylactic penicillin, which I continued taking until age 22. For the past few years I have been having increasingly bad symptoms and finally just found out that I have also had PANDAS the entire time. I also scored very high on the Cunningham Panel. Unfortunately, IV steroids made me worse, and the treatment recommended to me is rituximab, which I do not want to do. I feel like I need to figure out the root cause of why I am having an autoimmune problem. My symptoms are the following: -OCD -Mood crashes every few weeks related to OCD -Tics -Sleep disturbances -Social anxiety -Eye problems: My eyes and eyelids start to feel like they are shaking if I try to look at someone for a few seconds straight while trying to concentrate on what they are saying (has anyone else had this??); Occasional throbbing pain above and behind my eyes or pain when moving my eyes; Dilating pupils -Digestive problems -Acid reflux -Achy muscles sometimes -TMJ -Plaque on teeth -Some numbness in arms and legs when lying down at times Things I have tried: -Bactrim (no effect in first week) -Candex (same) -Air purifier for mold -Probiotics -Infrared sauna I am doing 23andMe and am thinking of doing tests for heavy metals, mold, other autoimmune diseases, gut testing, and maybe others. If anyone has any ideas or thoughts, I would be very appreciative. I am pretty desperate to get better 😑 Any recommendations for doctors in the Northern Virginia area would also be helpful.
  22. lulu648

    Touretic OCD

    Has anyone out there heard of Tourettic OCD? I just heard the term today for the first time. Any info appreciated! Thanks!
  23. I have been taking some immune boosters, antivirals, and antifungals for sometime now and notice reduce in tics. However, my thoughts become more scattered and quite frankly psychotic. I get anxious and my personality becomes rather dull when I take them. This has led me to the assumption that I do not have Tourette’s, but rather PANS. What are your experience with immune boosters or immunomodulators? Does it relieve tics at least? Would you have any idea why it may cause psychotic symptoms? I was thinking increased brain inflammation. Does it mean it’s helping rid of the infection causing tics? The list of what most certainly gives me psychotic symptoms Olive leaf extract Oregano Colloidal silver Reishi and other mushrooms Coconut oil, MCT and monolaurin
  24. Hello, I'm 17 years old. Over the past month or two I've noticed some what I believe is tic's. It started when touching a certain part of my body (my nose) caused a tic where my arms would not have any control and my hands would curl into almost like a first involuntarily. That has been going on for about 5 months. Until the last few months they are coming without touching my nose, they come in attacks or "tic attacks". Lasting about 30 min and then they stop. My tic attacks involve my arms almost "flailing" to put into a sense but not as bad, they never extend fully. my head will twitch and turn usually to the right but sometimes the left. My hands do weird gestures like pointing, extending, holding down 1 finger and balling into fists or claw like gesture. It feels like a surge of energy being shot into my body and my body responds automatically with twitching to realse the energy, does that sound like a tic? I tried to research but it told me they come as a small child, And I'm nearly an adult. Some triggers are thinking of a stress full situation, itching my nose haha. But they come sometimes when no identified trigger. Thank you for your time! I'd like to hear your thoughts .
  25. To give little history, I've been diagnosed with schizoaffective disorder, which is simply explained as bipolar and schizophrenia together. I've also had tics all my life, mostly blinking, and some OCD. Whenever I take immune boosting supplements my general feel of psychosis and irritability increases, and so does my tics. Any idea as to why? And I'm open to any recommendations on how fixing it. That's it for my question. Below are some indications for those that have the ability to do detective works. Olive leaf extract: gives me energy and temporarily cures tics. Often cause mania, anxiety, some delusional thoughts and dissociative feelings. Coconut oil and MCT oil: irritates my throat. If taken too much I get full blown symptoms of flu, even worse. Temporarily boosts energy and cause mania, but also heightens my anxiety. Cured warts on my feet. Oregano oil: made my tics worse and my head gets locked into thought loops and even with meditation my mind cannot stay clear headed for more than few seconds. This made me look at salicylate sensitivity as well as oxalates. I got a bottle of No-Nenol on the way so let's see. I have once cut out all high sal foods and cosmetics but it didn't seem to help much. But recently I've been consuming a lot of phenolic supplements and since I've cut them out my thoughts seem bit clearer. Some general main symptoms include Constant thought loops that are obsessive and unproductive, even though I frequently meditate (up to two hours daily) Tics and muscle tightening (semi involuntary) Brain fog Delusional feeling and thoughts Ultra ultra rapid cycling mood. Cocaine high - numb and no pleasure - suicidal depressed (recently okay ) Extreme sensitivity to sugar, leading to severe depression and anxiety Mild OCD Anxiety Digestion seems fine since changing my diet. Let me know your thoughts on this!
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