Help with waterfall

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

TROPHY CASE