Ticcer Responds To "Guy With Real Tourette’s" Reacting To Tics & Roses 🌹
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- čas přidán 27. 08. 2024
- This Is The Video I Am Responding To: • Guy with Real Tourette...
I hope you guys enjoyed this video! This isn't an attack on the CZcamsr who made this video in any way, I just wanted to use this as a conversation starter about complex tics. :)
The thing about tourette's and tics is that each individual's experience differs, but sadly many people (including those with tics) don't really understand that and it's quite harmful. Thank you for educating people Romy
It’s so nice to see someone talk about this because for me it’s very similar to you. Most of my vocal tics where I say something are contextual and often time one offs, I have really complex tics sometimes, they get extremely severe (and destructive) at times while they can be very very mild other times. I also often laugh at my own tics and encourage people around me to laugh when they say something contextually funny because for me personally it’s much more stressful when everyone is just kinda awkward about it. I can suppress for a moment and I can redirect sometimes before a specific tic happens. For example if I have to hold my torso still for a minute for lets say a medical procedure, I can try to redirect my tics to be rather facial, hand and vocal tics. Like suppression they will come out and usually stronger than if I hadn’t suppressed them, but for that brief period it can sometimes help me to get through things. I also sometimes have premonitory urges. Not usually very long before, only usually 2-3 secs tops, but still and if that happens and I know my tic is gonna drop or throw something or say something really hurtful (not the typical „fuck off“ but something really personal) I can try to suppress and/or redirect. This has saved countless glasses from being broken and sharp tools from ending up either in my own or someone else’s body. At other times tho I have absolutely no premonitory urge or control to suppress, it also depends on the type of tic for me.
I also saw that video and I must say that it made me feel so insecure and wrong, also because I‘ve only had tics in this intensity for a year now. It also very much played into parts in me that will doubt that I‘m even actually sick and will tell me I‘m just faking it, which was very hard to deal with. I don’t know if Tics‘n‘Roses is faking. Maybe. I won’t be the judge of that because tics are so individual and I don’t even know them personally. But if it was just for the reasons this person named, he‘s not very well educated and causing so much harm to others with tics when I‘m assuming he‘s trying to do the opposite.
Thank you so so much Romy for making this! I‘d love to chat with you on insta if you like about raising awareness and just living with tics. You can find me under @ellspietta
But no pressure❤️
The premonitory urge is 100% real. The feeling that you have to tic and know what’s coming is a strange sensation. And as you said I can suppress for a certain period of time. But they do come out with a vengeance.
I really appreciate your to the point, your explanations and your honesty! and I'm glad you have been able to laugh at yourself , since so much is not controllable. You Do deserve to be Happy !!!!🤗
I just discovered your channel, but already a fan, and you bring up a lot of points in an empathetic way similar to Carly from Ticcing Together. She lives in Canada done a video on Tics & Roses and some collaborations with other CZcamsrs, so I say all this thinking you two would have a great time with a collab if you two would be interested in such a thing. Thanks for sharing your experiences and insights :)
Hey man, noticed you haven't posted any videos recently. Hope everything's hunky dory :) got a couple of ideas for content:
I seem to be hyper-sensitive to atmospheric pressure and seem to be allergic to something in tap water. Maybe these are things you could cover.
I have Tourette's and Autism and possibly POTS, PANS/PANDAS/BGE and MCAS. When the air pressure is low I experience inflammation throughout my body. My sinuses get blocked, I get headaches and my body gets stiff, sore and achy. I get dystonic, seizy, more ticcy and more sensitive to things like light and sound. My thinking also 'stiffens up' and I struggle to process stuff.
The same kind of thing happens when I consume tap water, on top of which I experience respiratory problems, tongue and throat swelling, poorly tummy and mouth sores.
It could potentially be fluoride in the tap water or maybe chlorine that you are sensitive to?
@@ChronicAdvocate I was more suggesting this as something you could cover in your videos but I appreciate your thoughts :) fluoride is something I'm suspecting and have been drinking bottled water, which has been helping. My neuropsychiatrist thinks it's likely psychosomatic, which is of course a possibility and something I'm staying open to. Sorry for taking so long to reply to you but my symptoms have gotten way worse - I've started reacting to loads of stuff and am currently unable to even leave the house.
I doubt it's psychosomatic that just sounds like gaslighting. It does sound like a MCAS thing. Have you had specialist testing for Lyme and Co infections as they can cause MCAS, POTS and PANS and many people with Lyme have a lot of sensitivities. Mainstream Lyme testing isn't often accurate so some people use other tests like IgeneX. It might be worth reading about Lyme and seeing if that could be a possibility.
@@ChronicAdvocate I think my neuropsychiatrist genuinely believes that it's likely psychosomatic. He admits that histamine intolerance, etc., isn't his field of expertise. I think it's good that he's honest about that, however it would be nice if he went and consulted with an expert in such things. I'm going to ask that he does so but I'm not holding my breath! Thanks for the testing suggestions and advice. A tic bite didn't precede my symptom development so I don't think Lyme disease fits the bill. I'll keep looking into it just in case, though :) I'm also considering tests for different things as well as trying to wrap my head around the whole big picture - for example I've had a lot of things affect my jaw alignment over the years, which have possibly had a big impact on the directions my symptoms have taken.
@@karasutoyobareru You can have Lyme without remembering a tick bite. I tested positive for Lyme but have no memory of any tick bite. Ticks are tiny and they release a numbing agent when they bite so you often wouldn't remember it. They can also bite you where you cant see it such as the scalp or behind the ear. Lyme can also be caused by things other than ticks. Congenital Lyme is where the Lyme is spread from the mother to a foetus or spread through breast milk. Some other insects such as fleas and mosquitos can carry the bacteria that causes Lyme too. I know a lot of people who were told their symptoms are psychosomatic but they usually aren't. Maybe you could look into bowen therapy for your jaw. Atomspheric pressure changes definitely impact people with chronic illnesses.
Can someone please reach out to me.... I cannot stand it anymore. I was diagnosed when I was a kid with "minor turrets" there is absolutely nothing minor about the tics I have now! I'm almost 30 and they've grown to the point where I cannot breath, clear my throat or even swallow saliva correctly. Who can I see about them? What medications work best? I don't say things out loud but the not being able to satisfy my breath is overwhelming. I'm literally in tears and cannot get comfortable whatsoever.
Hey there, I recommend reading the books "Stop Your Tics By Learning What Triggers Them" By Sheila Rogers Demare and "Natural treatments for tics and Tourette’s" by the same author. The information in these books changed my life dramatically. You may also want to look at the ACN Latitudes Website, blog posts on managing Tourette’s successfully. A naturopath may be able to check for food sensitivities that may be triggering tics as food sensitivities were the biggest trigger for my tics and they may also be able to check for underlying inflammation which has an impact. A neurologist is usually the type of doctor who sees people with tics, they sometimes prescribe medication such as clonodine, topomax or antipsychotics to manage tics. These work well for some people but can have side effects. I'm so sorry to hear about how bad it all is for you, that definitely isn't minor. I wish for you to find something that helps!
You can email me anytime at ticcersuniteshorts@gmail.com or message me via my Instagram ticcers.unite
Good work Romy
Thank you ♡
@TiccersUnite Why is there such a strong correlation between people and tics and having OCD?
They originate from the same part of the brain - the Basal Ganglia. They also appear to share genetic links as many people with Tourette’s seem to have family members with OCD.
@@ChronicAdvocate By the way I started reading "Natural treatments for tics" by Sheila Rogers. I learned a lot just from the first few chapter alone reading the profiles and the struggles they went through. I can definitely share a lot of the agony these parents went through although fortunately my son's tics was never so bad to the point where he couldn't even stand still. I'm still gathering more info before considering doing the Elimination Diet and other suggestions in the book but I think it was you who had suggested cutting back on dairy and it does seem to help my son a bit. Keep up the great work!
@ticcers unite Do you know anything about the possible benefits of taking 'tissue salts' for tics? It's another idea I got from Sheila's book.
She was faking. Her family even said she was faking.
You missed the point in the video. I know ticsandroses was faking, however tics can be that complex and people can have tics that look just like ticsandroses tics and not be faking. We cannot assume that people are faking just because their tics are highly complex.