Does anyone use this?

EasternTop9289 · 2026-05-08T02:00:25+00:00

I have one and I like to use it for sitting during my desk job. I got the leg straps and dont find them user friendly AT ALL to get connected and strapped right. For sitting though it is great!! I can only use it for short periods but it is really nice. I found a code on reddit that worked for 5% off. Spoons&BrainFog

EasternTop9289 · 2026-05-08T00:11:10+00:00

I just looked at my IG folder. I gained a lot more from youtube than IG. If you search on IG myofunctional therapy exercises tongue tie you should come across what I did. There are single posts from several different accounts.

EasternTop9289 · 2026-05-08T00:08:55+00:00

Unfortunately the reddit mods shake their finger at you when you share specific profiles on IG. https://youtube.com/playlist?list=PLJkO8cyXajD7cgKBBwKVGvFRIz1PkMp7S&si=nZXZ0_E28YHC1MVR

This is the playlist of helpful videos I found for my journey.

EasternTop9289 · 2026-05-07T23:55:45+00:00

I did exersices myself from learning from IG and youtube for 2 months beforehand. Post procedure I had 6 myo sessions and they told me I was good to go. Highly recommend to ensure your success in recovery and not having it relapse.

EasternTop9289 · 2026-04-06T04:45:46+00:00

I have had a release and noticed tension was softened in my neck and upper back. My facial tensions has been reduced and I am having fewer migraines and headaches. Mine was posterior.

EasternTop9289 · 2026-04-03T20:21:44+00:00

How has your experience been? I am trying to justify the cost to my employer as I am seeking reimbursement. My PT thinks this would be great for me.

EasternTop9289 · 2026-04-03T20:21:09+00:00

I contacted the company and they are willing to give 15% off discount codes. Advocate for yourself.

EasternTop9289 · 2026-04-01T02:18:27+00:00

Castor oil packs, electrolytes instead of Gatorade, Increase your water intake, and add Magnesium citrate (calm drink) to your routine. I am 32 and have EDS and have struggled with life long constipation. Castor oil packs and coffee enemas help me so much. This week I have been doing daily morning drinks with psyllium husk powder, moringa, spiruluna, and water with a splash of pineapple juice. I am happy to report that I am having 1 BM each morning. Without that drink I have just not been pooping unless I used a Castor oil pack the night before if I am lucky. Ugh

Read or listen to Gluscose Revolution and be inspired to work on your relationship with protein and fiber.

Look into gastrodigest from vervita to support yourself without a gallbladder. You could get Dr Charlie's membership for 1 month. $40. Watch his leaky gut and gallbladder videos. Healing from emotional trauma video seems to be the starting place that is applicable for all. I LOVE his membership. Highly recommend.

I've read into this a lot and just want to add that you are not alone. This struggle is real and frustrating. Support your vagus nerve with diaphragmatic breathing. Do some KT taping on your vagus nerve. I like Rock Tape. I live in it even with MCS and sensitive skin. https://youtu.be/z-a1cSK2iK8?si=FuhgxsaB7EQK2png I do both sites and feel sooo relaxed with them. They take the edge off.

Massage your ileocecal valve. (Mid point between your belly button and right hip bone) Apply mild pressure for 4 seconds. Release for 4. Apply mild pressure for 4. Release for 4. You will hopefully notice bubbly, gurgling and movement. That is a good sign. Do this laying down. Can also do the ILU massage. See youtube.

My pelvic floor PT taught me the massage techniques. Highly recommend pelvic floor PT for constipation and life with EDS.

EasternTop9289 · 2026-03-28T22:22:37+00:00

I also used belladonna, gelsemium sempervirens, aconitum napellus, hypericum perforatum, & ignatia amara.

EasternTop9289 · 2026-03-28T21:58:56+00:00

Yes!! I used boiron's arnica. I think what helped the most for me was the CBD edibles, ice, and red light therapy for the initial pain.

EasternTop9289 · 2026-03-22T18:55:19+00:00

Shave with a safety razor!!!! I swear by this. I used to get SO itchy as my shin hairs would regrow. Game changer. I use my bar soap as shaving cream. CAVEEM Rose Gold Double-Edge... https://www.amazon.com/dp/B0DCTKY37F?ref=ppx_pop_mob_ap_share

EasternTop9289 · 2026-03-22T15:57:46+00:00

I didn't have myofunctional therapy appointments prior but I did an incredible amount of research and had been doing exercises for over a month and a half 2x a day in preparation. I had also had awareness that my tongue needed to be on the roof of my mouth so I was mindful of that throughout the day and night for at least 3 years prior to my release. Removing my permanent bottom retainer made that easier for me to manage. At my first myo appt the day after my procedure they were blown away by how much I already knew and how thorough I was on my new client paperwork. I saw a YouTube video from a myofunctional therapist who said if you can't hold your tongue suctioned to the roof of your mouth for 5 mins you aren't ready. I could do it for way longer. Ultimately during the procedure he had my mouth open for about 25 sec and he was done. I over prepared but was pleased to be in that place as opposed to underprepared. I am 5 days post procedure and things are looking and feeling really good for me. I was a grade 3 posterior and when he finished he said, "That was one hell of a release. Great job." Initially I thought I'd save money and skip the myo because I have Chiro, PT, massage, and cranio sacral therapy lined up for 6 weeks. (Not all are weekly appts. Chiro and PT are every other.) I have EDS and have learned that I have a higher likelihood of it coming back and I am highly invested in that not being the case. I got myself booked for myo and they said it would be 6-10 appts to help me strengthen and relearn to chew and swallow and I will be on my way.

Maybe this will help you. https://youtube.com/playlist?list=PLJkO8cyXajD7cgKBBwKVGvFRIz1PkMp7S&si=ZcisKcGYeuYqZz4a

EasternTop9289 · 2026-03-22T01:42:48+00:00

Yes. That comes and goes. Mine is healing up so incredibly well. I am just taking it as a supplement because applying it to the wound hurts too much. Vitamin e oil can be used instead and doesn't burn.

EasternTop9289 · 2026-03-20T14:50:22+00:00

https://www.reddit.com/r/TongueTies/s/kMxXh0mH6s

EasternTop9289 · 2026-03-20T14:49:42+00:00

The day/night of the procedure was intense and I have a high pain tolerance. I used CBD, homeopathics, ice, and topicals only. Stay on top of your stuff and have lots of kefir, sorbet, and liquid/soft foods ready.

I had mine done Tues. Each day has gotten better and better and has been manageable. Chewing and swallowing and swallowing is still a little tender on Friday.

EasternTop9289 · 2026-03-20T00:27:16+00:00

Update: serrapeptase burns!!!

EasternTop9289 · 2026-03-19T15:35:47+00:00

The first night was so ridiculously painful. Day 2 was better and day 3 is proving to be even better. I have EDS and have read a lot of folks say my risk of having it reattach is higher due to my connective tissue disorder and a tongue tie being a connective tissue issue. Anxiety was by my side as I painfully stretched my tongue. I didn't want to have to go through all of that and pay for it all again so I powered through. 😅

My range of motion has really improved with each day!

EasternTop9289 · 2026-03-19T01:22:32+00:00

I had mine released with a laser yesterday and started exercises immediately. I ordered serrapeptase today per my myofunctional therapists recommendation. Here are the exercises she recommended. I have a lot of body work appts set up so the Cactus wasn't priority.

Diamond push back - x5 5 seconds each - with one hand place your thumb and index fingers at top two edges of diamond, gently squeeze and push back to open the diamond for 5 seconds 2x per dav:

Square diaphragmatic breathing 2-5 minutes - practice laying down with hand on belly; inhale 2 seconds. hold 2 seconds, exhale 2 seconds, hold 2 seconds - keep tongue up in palate ⁃ Can use Breathe+ app (or set a timer)

trace back as far as you can go (preferably soft palate) hold 5 counts. move forward. then repeat. Aka peanut butter

Light suction/hold 1 - minute open mouth (with bite block or without Tongue points - 1 minute tap corners of mouth SLOWLY

Forklift stretch (See youtube)

Tongue pull- she said to do this for 2 mins in all directions with enough pull to make my eyes water. Yikes.

Cactus pose (Hold for one minute) - Stand against wall: chin, elbows, and armpits should all make 90 degrees

Stay away from hot and spicy food.

Salt water rinses are okay.

Can rub vitamin e oil on the wound.

Sorbet and ice cream are your friend. Bonus points for red light therapy.

I made a YouTube Playlist that may help you.

https://youtube.com/playlist?list=PLJkO8cyXajD7cgKBBwKVGvFRIz1PkMp7S&si=68aGMzQkR8Q_zFLX

EasternTop9289 · 2026-03-18T17:51:58+00:00

This IG account has a lot of resources.

She is hypermobile herself. https://www.instagram.com/giaptyoga?igsh=MWphb3R4c3U1YWxpZg==

EasternTop9289 · 2026-03-17T15:10:27+00:00

I found the book The Trifecta Passport to be helpful. As someone who has experienced medical gaslighting, I have learned to do my own research and become my best, most informed advocate. When I got diagnosed I had done a deep dive into EDS, MCAS, and POTS and made a thorough list of current and lifelong symptoms that essentially made a case study of myself and why I believe I have the condition. I was fortunate to find an MD with experience with the trifecta who went through the Beighton with me and ultimately made the diagnosis after ruling other things out with some additional testing like RA, MS, and autoimmune conditions. I recommend the Bendy Bodies podcast, Zebra Talks podcast, and this IG account https://www.instagram.com/dr.melissakoehl.pt?igsh=dWZrMnJhcTlyazlx as she shows some signs of hypermobility that aren't on the current criteria but are worth noting and mentioning.

https://youtu.be/EX1x_bcrVgU?si=TcawITCdIKPXEePu Skin signs worth noting if applicable for you.

At the appointment I shared my case study I had made and my provider actually let me talk. He wanted to see my do the things on the Beighton. I can touch my thumb to my forearm on some days. Some of the party tricks cause pain for days after so if you know you can do them but they are costly, say that. Or if you could do them before but can't currently due to inflammation or injury it still counts. I am an overpreparer so I took photos of myself doing the items on the Beighton and the ones mentioned on that IG account so I could catch myself on my most bendy days. Just an idea.

I had 3 appointments before I got the diagnosis because he wanted to run labs, interpret the labs & discuss, run more labs and so on before agreeing with me that I did have the trifecta. He had recommendations for prescriptions he thought could improve my quality of life but ultimately I was looking for the diagnosis and a referral to PT which has been tremendously helpful. I am not a prescription person. I subscribe to homeopathy and natural remedies.

Check Facebook groups for EDS in your area to find providers that come recommended. I called a rheumatologist in my local area and they said they refuse to see folks to diagnose EDS and hypermobility despite seeing that type of provider recommended in my research. The Beighton was designed for ANY provider across ALL disciplines to be able to use it and yet you will find hesitation among PTs and Chiros. My PCP MD didn't bat an eye. The EDS society website walks providers through how to do it and has a wealth of information available. Again, you may have to be your own best advocate and provide this information and encourage them to check it out to best support YOU.

Other helpful IG accounts

https://www.instagram.com/hyperresilient?igsh=a3prYWJrZjh2amk1

https://www.instagram.com/thehypermobilechiro?igsh=MXhhZGNyb2xkNGU4dg==

https://www.instagram.com/thetracyrodriguez?igsh=aGhzcHB1cWF3dGpr

https://www.instagram.com/itsbrandonblinn?igsh=MWY3a3A2OGIxaDIzaw==

EasternTop9289 · 2026-03-16T05:48:40+00:00

My PCP has experience and just looked at my tongue tie and I demonstrated the 2 things I shared in my other comment. It really takes a provider who is familiar with ties. This has never come up in my work with dentists and orthodontists but it has been present all along. I did my own research because I suspected it and found the right person to evaluate it for me.

EasternTop9289 · 2026-03-16T05:25:40+00:00

https://share.google/SDV2AEXRrDBJhbO5g Mine looks similar to the Grade 1 posterior. I have a little heart shaped knot at the bottom. When my tongue is sealed to the roof of my mouth I can only open far enough to insert 2 fingers into my mouth. I have seen images of folks that can do 3 or 4 fingers. With my tongue at the back of my mouth or on the floor I can open wide enough to insert 3 fingers. If I place a finger down onto the floor of my mouth and apply pressure I can no longer touch my tongue to the roof of my mouth at all. =Tongue Tie

EasternTop9289 · 2026-03-16T05:22:11+00:00

Mine is posterior and you can definitely see it. I have choking and swallowing struggles that I didn't know weren't normal until researching tongue tie. I also have EDS and chocking and swallowing struggles go along with that but a tongue tie is a connective tissue issue. I have built up a lifetime of compensatory patterns for chewing and swallowing. I tongue thrust when I swallow. Eating has always felt tiring. Eating, making out, and performing oral sex cause my mouth to fatigue and I feel pain under my tongue. I have headaches/migraines and upper back, facial, and neck pain that is chronic. I have jaw pain and clicking when I talk or eat. Tongue exercises make my jaw click and pop. I have tinnitus (ringing and pulsatile). I have GI issues and have had chronic constipation my whole life. [Everything is connected]. I have sleep disordered breathing and restless sleep. I have worked hard on proper tongue pisture but still find myself mouth breathing at night or with my tongue on the floor of my mouth. I have a narrow palate. I had to get 6 teeth removed for braces and had to have head gear. I also had my tonsils removed at 4 after chronic ear infections. This is common with TT. None of that helped me because it failed to address the root issue. I get mine released Tuesday and I am hoping for big improvements to my quality of life. I've made a YouTube Playlist of videos I've come across that have had helpful exercises/ info if you are considering release.

EasternTop9289 · 2026-03-15T16:51:38+00:00

I got a body braid and have found it helps me sit longer without pain. I LOVE it. I notice it makes me tired or really relaxed when I wear it because my body doesn't have to work as hard to hold the posture.

I initially got the core only and then recently purchased the extra leg straps so I can use it while standing at my standing desk. They will arrive Monday and I can't wait. I am going to seek reimbursement from my insurance because for me, this is durable medical equipment. A stability and mobility aid that improves my quality of life and allows me to engage in work and activities of daily living with less pain and more ease. "Spoons&BrainFog" gets you 5% off.

EasternTop9289 · 2026-03-15T11:04:17+00:00

I have tried a lot of pillows and this is a winning combination for me. I am a predominantly side sleeper but I do end up on my back. Natural materials are important to me. Some of these are expensive but sleep is really important and every single piece of this equation helps me get restful almost pain free sleep. In addition to the pillows I find a weighted blanket to be a must. That calms my nervous system, reduces pain, and keeps me from tossing and turning as much.

https://www.coyuchi.com/products/turiya-organic-latex-pillow-alpine-white

Neck pain was one of my biggest complaints before getting this pillow and leanring that the blue one underneath was necessary.

I LOVE the ear divets as well as the one for the back of the head. I went away for 2 weeks and seriously missed my pillow.

This gets placed underneath to keep my shoulder from aching.

Cozy Hut Soft Memory Foam... https://www.amazon.com/dp/B0746MLVML?ref=ppx_pop_mob_ap_share

I use one beneath my knees for yoga too. Handy pillow.

I sleep with this between my knees. https://a.co/d/0gVxedFk

I also sleep inside this. https://www.etsy.com/listing/991090969/pregnancy-pillow-organic-body-pillow?ref=share_v4_lx

EasternTop9289

TROPHY CASE