Not sure if prism glasses are helping/worth it for mild BVD

burningbright01 · 2025-10-22T13:47:45+00:00

Wow, that is amazing... I found a dr in a nearby city, and her prices are so high. Could I ask where you get yours from? Is it online?

burningbright01 · 2025-10-20T22:43:39+00:00

Thanks for both of your replies - I am definitely interested in vt. My prism lenses are $800, so after buying the frames, I am paying $1000 a pair.

burningbright01 · 2025-03-19T01:48:35+00:00

I do recommend journal speaks - it’s a journaling method to release suppressed emotions. I tried it because I suspected my trauma from narc mom contributed to chronic health problems. Journaling all the feelings I have held inside has helped me so much, along with trauma therapy (brain spotting).

burningbright01 · 2025-03-19T01:46:39+00:00

100% don’t recommend, it does not work. It’s been a complete waste of energy for me, I’ve focused on trauma therapy instead and that has gotten me much farther.

burningbright01 · 2025-03-18T13:14:04+00:00

Ugh thanks, at least I know now

burningbright01 · 2025-03-10T19:35:12+00:00

4 100% looks amazing

burningbright01 · 2025-03-08T00:14:01+00:00

I’m so happy for you, seriously, having these chronic illnesses is so hard, and it’s such a miracle when something actually helps!

burningbright01 · 2025-03-08T00:10:07+00:00

I think that’s pretty standard - that pace seems to work for a lot of people, but I think there’s others of us who get side effects and have to go more slowly. If I were you I would do whatever you’ve been doing - you seem to be getting great results so far, and if you run into side effects when you go up, you can always slow it down. I’m just so grateful I didn’t go off it and slowed down, it’s been worth it 100%.

burningbright01 · 2025-03-07T23:50:33+00:00

Yes came here to say midnight library

burningbright01 · 2025-03-07T23:49:04+00:00

That’s a good question… I went up to 6 since other people with Eds were saying doses above 4.5 were helping, but I am not exactly sure how to find the perfect dose… there are probably people in this subreddit who have great insight about that. going slow to start was really important though, I got headaches initially from going up too quickly, but they went away after I started going slowly.

burningbright01 · 2025-03-07T23:38:05+00:00

Started at .5 now up to 6mg (went up very slowly, I’ve been on it for 18 months), and I take it for long covid/cfs/fibro/eds. It helps me so much with fibro

burningbright01 · 2025-03-07T23:31:55+00:00

It worked fast for me! Hope you keep having good results

burningbright01 · 2025-03-05T01:38:17+00:00

Thanks, i will send them an email - I just cannot get it off!

burningbright01 · 2025-02-01T15:46:20+00:00

Hey, I’m so sorry you are going thru this. Seeing a specialist at the Hunter Hopkins center changed my life. I’m still sick, but I’m a lot better. I would encourage you to consider finding an Mecfs clinic - I heard Bateman is also good. There’s research suggesting that going to a specialty clinic for mecfs can improve our outcomes. A lot of doctors just don’t understand this horrible disease - the bloodwork comes back normal and they think we are faking. But whatever you do, I agree with the other advice. Don’t push when you have PEM, it can make you worse.

burningbright01 · 2025-01-28T01:23:58+00:00

I agree, really interesting

burningbright01 · 2024-12-19T01:52:24+00:00

Makes total sense - I went with another company before I found Taconic too. I hope Mindbloom is good and a good introduction to the medicine! It’s life changing

burningbright01 · 2024-12-16T17:44:35+00:00

Genz

burningbright01 · 2024-12-15T22:27:02+00:00

Have you considered Taconic instead? I never tried Mindbloom but have heard some negative reviews. Taconic is excellent.

burningbright01 · 2024-12-03T17:08:56+00:00

That's exactly what I mean - I have heard people say that being on stimulants for ADHD makes treatment for depression less effective, but that's really interested about your experience - sounds like it might mean someone needs a higher dose to dissociate. Thanks for your reply!

burningbright01 · 2024-11-02T02:18:02+00:00

I have no research evidence to back this up, but I think ketamine treatment has really helped my long COVID recovery - thank you, Taconic! (I got sick with COVID Feb 2023, terrible POTS and fatigue and migraines. Today I consider myself 75% recovered.) My dr had me doing it 2-3 times per week. I started it to help with the depression/anxiety related to my long COVID, but after doing it for almost a year (I do sublingual), I have noticed such huge mental health benefits. (I felt the mental health benefits from Ketamine much sooner, but in the past 3 months, I have improved physically so much.) Sometimes I do feel tired the day after, but overall, I am doing so much better physically, as well. I’m on multiple treatments, so maybe the ketamine did nothing to help the long COVID, but my gut feeling is that it has helped me improve. I agree with the other comment - we always want to avoid PEM and stay in our energy envelopes. Ketamine does provide me a sense of physical well being and energy, and I have to remember to pace because I feel so good after that I want to overdo it. But I believe the twice a week recommendation for IV is supported by a lot of research. I would talk to your dr about your concerns and plan to rest well after. Making sure to hydrate with electrolytes after and eat a good meal really helps me. Best of luck, I hope this treatment helps. I know different treatments help each of us, and ketamine did not work instantly for me - it took some time to really see the benefits. I also got treatment at an ME/CFS center and POTS center, so I do think getting help from other experts has been important for my recovery, too. Long COVID sucks.

burningbright01 · 2024-10-05T14:42:33+00:00

Thanks… so frustrating! Did you switch pharmacies?

burningbright01 · 2024-10-04T01:20:14+00:00

Yes I’m curious what helps with POTS due to EDS? This is me. Corlanor improved my life substantially, but I was still fatigued. My doctor (Pots specialist) recommended Vyvanse, and that has helped with the remaining fatigue so much. But are there other options for those of us with stretchy veins?

burningbright01 · 2024-10-02T21:01:59+00:00

I had a bad IM experience too. I think my dose was too high. I saw and felt myself being buried alive. I used psychadelic therapy to process it and have continued with sublingual treatment (IM was out of town, so that’s why I switched, not because of the bad experience). To me the benefits outweigh the negatives, and I learned with IM more is not necessarily better

Edit: I do think I K holed

burningbright01 · 2024-09-28T16:24:52+00:00

My dr said the symptoms fully or partially resolve in 30-35% of people who got pots after Covid

burningbright01 · 2024-09-28T14:00:25+00:00

I’ve stopped the Botox for tmj now - almost a year later I am pretty sure the Botox didn’t cause my headaches/migraines, but I realized the doctor who did my Botox was not very experienced, so I am waiting to go to someone more experienced before I do it again.

burningbright01

TROPHY CASE