Echo

Hi @banana I know it's a few years since you posted...but on the off-chance that you're still around I wanted to tell you that the lens material could be the problem. Some optometrists, especially the chain stores, will try to upsell you the expensive "thinner" lenses. These are usually made of polycarb. This is usually material 1.59 or 1.6. Their only advantage is that they are thinner and more shatter-proof than standard 1.5 plastic lenses. The downside is they have the worst vision quality out of all lens materials. Two independent optometrists have now told me that they steer clear of polycarb as it causes issues for lots of people, especially people who are quite sensitive. If I were you, I would go back to where you got the glasses from and ask what the lens material is. Ask for the actual number. If it's 1.59 or 1.6 it is polycarb. I had terrible headaches with polycarb glasses which the chain store glasses shop basically didn't want to acknowledge. They kept saying it wasn't possible because I had the most expensive, newest technology lenses and so therefore I "didn't give it enough time" but I am what is casually known as a "polycarb non-adapt". No amount of time was going to help me with polycarb lenses, you might be the same. 1.5 plastic lenses are the least expensive and also provide the best vision quality out of all lenses except actual, real glass lenses.

Thanks @zerohours000 ...what is PA? 🤔

Hi @Pistol so does that mean if the B12 test comes back normal then you don't have issues with absorption? I've had mine tested several times but it always comes back normal, right in the middle of normal range. Or can you have a normal blood test but still be deficient?

Hi @samuel0404 I'm sorry to hear about your reaction to this thing. I haven't used it myself but read about it briefly about a year ago. Can you please explain how it works/what you did in the sessions? The best I can tell you is that I had inner ear testing done last year and this test to which I was supposed to have a "mild" reaction completely screwed me over but I got back to my normal after about a month. Hopefully you will get back to your baseline as well with time.

Thanks @Gerbera! I think dancing is just good for the soul in any case. Do you ever get the shakes after one of your dancing sessions?

Hi @KiminOrlando I mean an optometrist. Opthamologists don't provide vision therapy as far as I'm aware. I said it should be a licensed optometrist because I have seen people offer vision therapy who do not have training in optometry and I'm sure what they're offering is not the same thing.

@zerohours000 Take it as a good sign that you no longer need to hydrate or compression stockings etc. Two separate cardiologists told me that basically everything is up in the air and they have seen people spontaneously recover or get much, much better with time and without doing anything really. I don't believe that everyone who gets dysautonomia will have it for life. I think it's different for each individual and depends on so many factors. I would love to hear your experience with HIRREM if you ever give it a go because I don't live in the US/Canada region of the world so I doubt I would see it any time soon. If you ever decide to look into vision therapy make sure you go for a neuro-optometrist/behavioural optometrist. They should be a properly trained and registered optometrist who specialises in vision therapy. It didn't necessarily help dysautonomia but I feel like my eyes get less tired now and I learned what kind of lenses I should be asking for when buying glasses which is a big help. (High index thin lenses are actually the crappiest when it comes to vision quality. Who knew.)

Hi @Gerbera do you mind explaining what you mean by aerobic dance? Is it like a specific class you take or a specific style of dance? Hi @zerohours000 To be honest my symptoms seem like POTS dysautonomia and the things that go with it minus the tachycardia. Though I'm sure I had transient POTS when it first started. (Heart rate went up by 29 bpm at cardiologist's office. Not 30 go figure.) I apologise in advance but I would prefer to not go into detail because I don't really like talking about it and prefer to focus on healthy times. My diagnosis was not from a TTT but from an ECG. I apparently have "widespread T-wave inversion" upon standing which my cardiologist says is a sign of autonomic imbalance. For a long time I thought I had falling blood pressure when standing but after several measurements at the doctor's office on different occasions when I felt particularly "dizzy" it seems that that's not the case. It always comes back normal. (We take measurements lying down and then again after standing for a while.) Same as when I felt like I had sinus inflammation/congestion...went to the ENT, had a CT scan of sinuses and it came back crystal clear. I have also done vision therapy and the wonderful behavioural optometrist who I did that with said he could tell there was some imbalance in the autonomic nervous system from the way my pupils were dilating during different tasks. (Pupil dilation is controlled by the autonomic nervous system which I didn't know until then!)

I have also found out from my research throughout yesterday that the divisions of the autonomic nervous systems and localised to different hemispheres. I think the left hemisphere controls parasympathetic and right hemisphere controls sympathetic. However, these can also be reversed in some people just like some people are left handed. I had an article on this but I had so many tabs open and trying to process so much information that it got lost lol! Pistol: Hi there, yes I was diagnosed with non-POTS dysautonomia over a year ago. It was a frustrating journey running around between a whole heap of different specialists to finally get it figured out, which is I'm sure the experience of most people here! MomtoGiuliana: You're welcome! I'm glad you found it useful/interesting

Dear all, I have been a lurker on this forum for some time and feel like I know you all a little bit. I never felt I had much to contribute and thus didn't think about posting. However, after doing another round of research recently I wanted to share something that some of you may find interesting. First, I searched Temporal Lobe Epilepsy and I came across this article https://www.j-epilepsy.org/journal/view.php?number=137 I know that dysautonomia is not epilepsy but something in the abstract caught my attention. It says "We found that hemispheric lateralization of seizure foci in the temporal lobe had a differential effect on autonomic CV functions before surgery. Before surgery, parasympathetic reactivity was higher in the LTLE group, and sympathetic reactivity was higher in the RTLE group. After surgery, autonomic CV functions were comparable between the groups, suggesting that TLE surgery stabilizes autonomic CV functions." In other words, people with epilepsy of the LEFT temporal lobe are prone to parasympathetic overactivation (bradycardia etc.) while people with RIGHT temporal lobe epilepsy are prone to sympathetic overactivation (tachycardia etc.) and that temporal lobe epilepsy surgery stabilises cardiovascular function in these patients. It is also interesting to note that when I searched the functions of the temporal lobes, memory came up as a very big one. While I don't think epilepsy surgery is a treatment for dysautonomia I did a little more creative searching and found this... ...A neuroplasticity tool being developed called HIRREM. Here is the main page https://www.wakehealth.edu/Research/Neurology/HIRREM/About/About-HIRREM.htm There are 6 articles on PubMed if you search HIRREM. One of them is about using HIRREM for POTS. The abstract of this article says "There was a trend for improvements in self-reported symptoms related to the autonomic nervous system. Use of HIRREM was associated with reduced sympathetic bias in autonomic cardiovascular regulation, greater symmetry and reduced amplitudes in temporal lobe high-frequency electrical activity, and a trend for reduced autonomic symptoms." This is very exciting news and I don't know why I haven't come across this on dysautonomia sites. This may or may not be helpful for those whose dysautonomia is caused by autoimmune disease or similar but I think it's a significant research path. Nice to meet you all! -Echo