kalamazoo Posted January 23, 2017 Report Share Posted January 23, 2017 Does anyone have any pineal cysts? I've had one for a while I guess and over the past 5 years it's grown about 10mm, reaching 13mm currently. After googling a ton and trying to learn as much as possible I did read a connection between POTS, dysautonomia and the possibility of it being connected to pineal cysts. It seems like a long shot but I'm curious if anyone has one as well? Quote Link to comment Share on other sites More sharing options...
AmmoniteAshley Posted January 30, 2018 Report Share Posted January 30, 2018 Hi! I have been diagnosed with dysautonomia and pots. I have an approximately 1cm pineal gland cyst and wonder the exact same thing! Quote Link to comment Share on other sites More sharing options...
Kerri Posted May 8, 2019 Report Share Posted May 8, 2019 On 1/23/2017 at 6:22 AM, kalamazoo said: Does anyone have any pineal cysts? I've had one for a while I guess and over the past 5 years it's grown about 10mm, reaching 13mm currently. After googling a ton and trying to learn as much as possible I did read a connection between POTS, dysautonomia and the possibility of it being connected to pineal cysts. It seems like a long shot but I'm curious if anyone has one as well? Have you learned anything since your original post? I do hope you’re feeling well. I have a 10mm pineal cyst, as of 2017, which was originally discovered in 2015. I too have POTS and would be curious of any connection to Dysautonomia. Quote Link to comment Share on other sites More sharing options...
bombsh3ll Posted May 9, 2019 Report Share Posted May 9, 2019 21 hours ago, Kerri said: Have you learned anything since your original post? I do hope you’re feeling well. I have a 10mm pineal cyst, as of 2017, which was originally discovered in 2015. I too have POTS and would be curious of any connection to Dysautonomia. Me too! I had not been made aware of it by the doctors ordering my scans, but applied to obtain my results to send for a neurosurgical opinion on possible cranial settling. I discovered I have a 1cm pineal cyst which was first seen April 2017 and unchanged on my scan March 2019. It is reported to be benign in appearance and may be an incidental finding but I do wonder. Also have splitting headaches but only when upright. I am going to discuss my recent scan result with the neurologist next week. B xxx Quote Link to comment Share on other sites More sharing options...
Jason_X Posted May 11, 2019 Report Share Posted May 11, 2019 I realize that the original post was over 2 years ago, but I think that it's still a good idea to leave something on record in this thread. I have a pineal cyst as well as REALLY bad sleep problems. I’ve been told a variety of things from various doctors about it. I think that the most truthful ones say “I don’t know.” Some have said that it’s completely harmless and not the cause of any symptom. I’ve had one or two say that it’s very possible that it could have a role in my sleep problems. My sleep problems got serious in the early nineties. An MRI showed ~ 1cm cyst at the time. My neurologist at the time said that I might want to get a new scan about every 10 years or so. I got another scan about 11 years later, but the doctor didn’t order the contrasting agent, so it’s pretty hard to see, but it seemed to be slightly bigger. I’m long overdue for another scan. Quote Link to comment Share on other sites More sharing options...
bombsh3ll Posted May 11, 2019 Report Share Posted May 11, 2019 6 hours ago, Jason_X said: I have a pineal cyst as well as REALLY bad sleep problems. I have struggled with insomnia since childhood & wondered this myself as the pineal gland helps regulate circadian rhythm. I had a brain MRI scan in 2001 for an unrelated reason though which was reported normal so either the cyst wasn't there then or the scanning technology at that time wasn't as high resolution. Thinking about it though, I was told my scan was normal in 2017 & only discovered the cyst when I got my recent scan report referring to it as being "unchanged since previous MRI", so it was there, the neurologist just hadn't mentioned it in 2017, so perhaps this was the case in 2001 also. B xxx Quote Link to comment Share on other sites More sharing options...
Jason_X Posted August 3, 2019 Report Share Posted August 3, 2019 My original MRI which detected the cyst was roughly 1990. They used the contrast agent at the time which made it much more easily visible than the can ~10 years later without the contrast agent. I don't remember what the contrast agent was, but it was injected with an IV drip into my hand during the procedure. Quote Link to comment Share on other sites More sharing options...
Apey Posted June 16, 2022 Report Share Posted June 16, 2022 (edited) I also have Dysautonomia, recently diagnosed and like everyone else I had an MRI about 2 months ago and approx 0.7 cm Pineal Gland Cyst noted as well as Few subcentimeter foci of T2 prolongation in the deep and subcortical white matter of the cerebral hemispheres in the frontal lobes. I have had excessive sleeping issues, etc for about 6 yrs. Awaiting a neurologist referral. Anyone have any insight??? Edited June 16, 2022 by Apey Typo Quote Link to comment Share on other sites More sharing options...
JCP Posted June 26, 2022 Report Share Posted June 26, 2022 Google Dr Patel at MUSC in Charleston SC. There is a Facebook group pineal gland tumors and cysts. Quote Link to comment Share on other sites More sharing options...
KateN Posted January 13 Report Share Posted January 13 I have a pineal cyst and dysautonomia and I’m convinced they are connected. The dsyautonomia is ruining my life, it’s so intense. When I ask the neuro surgeon he says no connection , to every question and that he won’t operate because too dangerous Quote Link to comment Share on other sites More sharing options...
Pistol Posted January 13 Report Share Posted January 13 @KateN Welcome to the Forum! I have not heard of pineal cysts being connected to dysautonomia, but I would assume that the discomfort from it could cause you enough stress to have a flare-up of symptoms if you already have dysautonomia. There are many factors that can cause us to flare - pain and discomfort are one of them. Quote Link to comment Share on other sites More sharing options...
MTRJ75 Posted January 14 Report Share Posted January 14 This is interesting. Can't believe I haven't seen this thread before. I've had a cyst show up on brain MRIs. Not sure if it's pineal or not. Would be really strange if there are a bunch of us with them. Quote Link to comment Share on other sites More sharing options...
Pistol Posted January 14 Report Share Posted January 14 @KateN I did more research and found this article So https://pubmed.ncbi.nlm.nih.gov/20055263/#:~:text=Pineal cysts usually have no,oculomotor disturbances%2C and obstructive hydrocephalus. Here it mentions this: "Pineal cysts usually have no clinical implications and remain asymptomatic for years. The most common symptoms include headache, vertigo, visual and oculomotor disturbances, and obstructive hydrocephalus." So, IMO the symptoms caused by the cyst can mimic Dysautonomia, since headaches, vertigo and visual disturbances have all been reported in dysautonomias. However, I will have to look into it further to make sure my theory is correct! Quote Link to comment Share on other sites More sharing options...
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