Echo Posted July 22, 2018 Report Share Posted July 22, 2018 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 Quote Link to comment Share on other sites More sharing options...
Pistol Posted July 22, 2018 Report Share Posted July 22, 2018 Hello Echo - and welcome! Thank you so much for posting this information, we are always interested in new research and this is quite interesting. Do you suffer from dysautonomia? Quote Link to comment Share on other sites More sharing options...
MomtoGiuliana Posted July 22, 2018 Report Share Posted July 22, 2018 Thank you for sharing this! Quote Link to comment Share on other sites More sharing options...
Echo Posted July 22, 2018 Author Report Share Posted July 22, 2018 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 Quote Link to comment Share on other sites More sharing options...
dizzytizzy Posted July 23, 2018 Report Share Posted July 23, 2018 Very interesting, @Echo. Definitely going to dig into this further! Thanks for posting. Quote Link to comment Share on other sites More sharing options...
Gerbera Posted July 23, 2018 Report Share Posted July 23, 2018 Sign me up... it's also being used to treat PTSD https://futurism.com/hirrem-treatment-ptsd/ "Sensors placed on a PTSD sufferer’s scalp read electrical signals in their brain. These signals are then fed into a computer that uses specially designed algorithms to “translate” the signals into auditory frequencies. When these frequencies are played back in near-real-time, the patient is able to actually hear their own brain waves." I've been using house music and aerobic dance with some success... it's difficult to do it but the benefits later are worth it Quote Link to comment Share on other sites More sharing options...
zerohours000 Posted July 23, 2018 Report Share Posted July 23, 2018 @EchoCan I ask what your symptoms are? I don't have POTS, OH, NCS --- or any of the heart/syncope/orthostatic issues. So I'm curious as to what others without those have for symptoms and what they've done for treatment? Thanks in advance. And I'll definitely look into this treatment as well. I should also add that, as of yet, I do not have any kind of diagnosis. In fact, I've been told by two neurologists that I do not have dysautonomia. Which could very well be the case, I suppose. I just don't know yet. Quote Link to comment Share on other sites More sharing options...
Echo Posted July 23, 2018 Author Report Share Posted July 23, 2018 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!) Quote Link to comment Share on other sites More sharing options...
zerohours000 Posted July 23, 2018 Report Share Posted July 23, 2018 14 minutes ago, Echo said: 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!) @EchoOkie doke. No worries. I had a “normal” TTT; had literally one day where I maybe had low BP and got shakes but it’s evened out and I’ve henceforth have not needed to hydrate a lot nor do I wear those compression stockings or do anything to compensate. That’s interesting about the pupil dilation though. I haven’t been to an optometrist since this all started. Be curious as to what they’d say. The HIRREM device will be out in November I was reading. I might try and either get one or see if it’s offered as treatment in my state. Sounds promising. I haven’t found any good answers from doctors but something is up. Thanks for the reply. Quote Link to comment Share on other sites More sharing options...
Echo Posted July 23, 2018 Author Report Share Posted July 23, 2018 @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.) Quote Link to comment Share on other sites More sharing options...
zerohours000 Posted July 23, 2018 Report Share Posted July 23, 2018 5 hours ago, Echo said: @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.) @EchoYes. It really is up in the air right now. Some things for me have gotten better (like sleep recently) but some have gotten slightly worse (like decreased stomach motility). So it’s difficult to tell. I’ll definitely let you know about HIRREM if I find a provider or purchase it outright. I just know it’s available in November. Quote Link to comment Share on other sites More sharing options...
KiminOrlando Posted July 23, 2018 Report Share Posted July 23, 2018 Are you saying an optometrist or an opthamologist? The Opthamologist is an MD. The optometrist is not. Quote Link to comment Share on other sites More sharing options...
Echo Posted July 23, 2018 Author Report Share Posted July 23, 2018 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. Quote Link to comment Share on other sites More sharing options...
KiminOrlando Posted July 23, 2018 Report Share Posted July 23, 2018 Interesting. I didn't know there was a neuro-optometrist. Quote Link to comment Share on other sites More sharing options...
Gerbera Posted July 24, 2018 Report Share Posted July 24, 2018 20 hours ago, Echo said: 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 Echo: Sure... most of the music I listen to is electronica based stuff... longer tracks that I can use for background sound to help drown out tinitus and hamster wheel thoughts ;-) and the track I'm using for aerobic dance is: AYAHUASCA [Progressive Psytrance Mix - 2016].mp3 (I got it off YouTube if you're interested, search the title) Every day I have a sort of routine set of things I do... it helps keeps me focussed somewhat and fills out my day... after I go do my errands around town (which is max 1 hr and I'm already into pretty heavy dizziness and fatigue by that point) I have some lunch which gives me a bit of a boost... I also drink green tea and take caffeine pills... I know, prob not a good thing but I'm having a really hard time right now (I break the tabs in pieces and take a whole one collectively during lunch so I can at least continue on) then I have 20 min to do aerobic dance... I used to work in an electronica club and I'm pretty addicted to beats... so it takes me away somewhat in my mind and I just try to do dance moves that are varied and move all parts of my body in different ways... this is quite difficult... just to move and keep doing it and as I do my lungs are straining, my legs pooling with blood even with compression stockings... so I can feel the cardio fx a lot... I press on and get that done... then I do these exercises (another thirty minutes) I found in a pamphlet designed for people who are at risk for falls... it's a series of 14 moves... 8 are done sitting and 6 standing... by the time I get to the standing ones I'm on the verge of collapsing... I'm getting greyout and just 'walking through jello' fatigue but I just press on and keep telling myself I have to get it done I have other routines, but I'm probs already into the tmi zone... pm me if you want... G Quote Link to comment Share on other sites More sharing options...
Echo Posted July 26, 2018 Author Report Share Posted July 26, 2018 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? Quote Link to comment Share on other sites More sharing options...
zerohours000 Posted July 26, 2018 Report Share Posted July 26, 2018 Just wanted to add this because it specifically mentions the autonomic system: https://www.livescience.com/56121-brainwave-balancing-hirrem-migraines.html Quote Link to comment Share on other sites More sharing options...
Gerbera Posted July 26, 2018 Report Share Posted July 26, 2018 1 hour ago, Echo said: 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? I feel shaky from fatigue... it increases pooling in my legs/feet and I get pretty dizzy... so after I sit with my feet raised Quote Link to comment Share on other sites More sharing options...
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