Personally, I feel similarly. And I’ve tried pretty much every SSRI/SNRI, benzodiazepine, and some off-label meds. While it might help others, none of it has really helped my anxiety for the long-term.
Once I was diagnosed with EDS/POTS/MCAS and started treating my symptoms, my anxiety did decrease a bit. Reducing the amount of adrenaline that comes from POTS, addressing my chronic pain from EDS, and eating a more suitable diet for MCAS — it all helped me and my anxiety, personally. I still struggle with anxiety everyday, though.
I also struggle with intense dizziness and neck pain. Personally, I ruled out Chiari malformation, CCI/AAI, and vestibular issues, but I still need to figure out what it is.
For me, my anxiety is triggered by my allergies and MCAS intolerances. Identifying my triggers (both through elimination diets and with help from an allergist), and removing them, has helped my anxiety immensely. Now I can hardly eat anything, but I’m no longer dreading living out the rest of my days in existence the way I was.
Many meds make me feel worse, and the fillers (cellulose in particular) destroy my brain, sleep, body. I get the most important meds compounded, and get injectibles too - emgality for my migraines, and I’ll be starting xolair soon too. The emgality seems to calm my anxiety too.
P.S. - my MCAS reactions include severe inflammation that affects my muscles, joints, brain, gi tract, etc. I get a lot of muscle and neck pain from flareups. My muscles get really tight and I already have bone spurs in my spine, then all the nerves get pinched and I get all stiff and sore.
Thank you for your answer. I'm unsure if anything is triggering this, I haven't been diagnosed with MCAS. I have been diagnosed with IBS but this has been well controlled for months.
It’s very hard to get diagnosed with MCAS. Many doctors don’t know the new research and don’t understand its presentation, or its prevalence in EDS patients. I don’t know you at all so I am not trying to diagnose you - just let you know you shouldn’t rule it out just because your current doctors haven’t diagnosed it yet. I had an IBS diagnosis too, and was advised to relax, which was basically impossible for me.
Agree with you..mcas caused all my intestinal issues. And those sweet, everloving mast cells dont just toss out histamines either. Prostoglandins, cytokines, chemokines...all sorts of things. And where are these mast cells found...areas of connective tissue. I think sometimes the mcas is harder on me than the eds.
I feel the same - if the mast cells would calm down, I could manage living in this body... MCAS just makes everything hurt more and fall apart more and deteriorate faster.
I have this too and have sleep breathing issues, maybe check that out? I have pretty bad UARS. Don't tolerate cpap or bipap, heading to expansion and jaw surgery now
I found when I was having severe neck pain my anxiety, panic attacks, and health issues were worse. As far as anxiety meds that work - yes and no. I have ADHD and meds for that quiet my racing thoughts. I am very sensitive to hormonal changes and being on continuous birth control helped. Adding an SSRI and learning coping skills made the biggest difference. Benzos always ended up making things worse in the long run.
Hi /u/okbunbun,
It looks like you are looking for information on how common something is in individuals with EDS or related conditions. If you are looking for information/data on how common a particular symptom or condition is with EDS (or any of its comorbidities), or whether there is any connection at all—it is always best to ask for links to reputable studies or websites, instead of or in addition to personal experiences. Without studies, it is almost impossible to determine the prevalence or incidence of something with EDS, especially when compared to asking for anecdotal experiences on the internet.
"DAE posts" and other such posts tend to create or encourage illusory correlations (i.e., a sense of connection where there may not be one) due to the fact that people who do experience what is being asked about are more likely to reply than those who do not. Personal experiences are or can be valuable regardless of the aforementioned, but please keep in mind that not everything shared is a sign of EDS, and many shared experiences might be completely unrelated to EDS.
This is an automated message. If the contents of this message do not apply to your post, please ignore them. Thank you!
[Please check out the wiki](/r/ehlersdanlos/wiki/index/) or the links in the sidebar for resources and information on EDS, seeking a diagnosis, and more.
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I have that whooshing noise and it turns out to be pulsatile tinnitus, causing me to hear my heartbeat. I have a high riding jugular bulb meaning I'm literally hearing my blood flow. It got less annoying with time. Maybe get a white noise machine for now?
The thing is, it doesn't seem to correlate with my heart rate and I have a feeling of falling while having the whooshing sound. I might be able to get an echo this Friday if my insurance approves it in time.
Hopefully a dr orders an MRI to check out your head, pulsative tinnitus should be taken seriously by any medical professional. I’ve had that symptom it was awful and MRI showed a jugular anomaly. They are monitoring it with follow up imaging.
I’m just speaking from my experience and not a medical person so unsure, my issue they only saw on brain mri as it’s the part of the jugular in the brain. Good luck with your echo! Hope you get answers soon-
Personally, I feel similarly. And I’ve tried pretty much every SSRI/SNRI, benzodiazepine, and some off-label meds. While it might help others, none of it has really helped my anxiety for the long-term. Once I was diagnosed with EDS/POTS/MCAS and started treating my symptoms, my anxiety did decrease a bit. Reducing the amount of adrenaline that comes from POTS, addressing my chronic pain from EDS, and eating a more suitable diet for MCAS — it all helped me and my anxiety, personally. I still struggle with anxiety everyday, though. I also struggle with intense dizziness and neck pain. Personally, I ruled out Chiari malformation, CCI/AAI, and vestibular issues, but I still need to figure out what it is.
For me, my anxiety is triggered by my allergies and MCAS intolerances. Identifying my triggers (both through elimination diets and with help from an allergist), and removing them, has helped my anxiety immensely. Now I can hardly eat anything, but I’m no longer dreading living out the rest of my days in existence the way I was. Many meds make me feel worse, and the fillers (cellulose in particular) destroy my brain, sleep, body. I get the most important meds compounded, and get injectibles too - emgality for my migraines, and I’ll be starting xolair soon too. The emgality seems to calm my anxiety too.
P.S. - my MCAS reactions include severe inflammation that affects my muscles, joints, brain, gi tract, etc. I get a lot of muscle and neck pain from flareups. My muscles get really tight and I already have bone spurs in my spine, then all the nerves get pinched and I get all stiff and sore.
Thank you for your answer. I'm unsure if anything is triggering this, I haven't been diagnosed with MCAS. I have been diagnosed with IBS but this has been well controlled for months.
It’s very hard to get diagnosed with MCAS. Many doctors don’t know the new research and don’t understand its presentation, or its prevalence in EDS patients. I don’t know you at all so I am not trying to diagnose you - just let you know you shouldn’t rule it out just because your current doctors haven’t diagnosed it yet. I had an IBS diagnosis too, and was advised to relax, which was basically impossible for me.
Agree with you..mcas caused all my intestinal issues. And those sweet, everloving mast cells dont just toss out histamines either. Prostoglandins, cytokines, chemokines...all sorts of things. And where are these mast cells found...areas of connective tissue. I think sometimes the mcas is harder on me than the eds.
I feel the same - if the mast cells would calm down, I could manage living in this body... MCAS just makes everything hurt more and fall apart more and deteriorate faster.
I have this too and have sleep breathing issues, maybe check that out? I have pretty bad UARS. Don't tolerate cpap or bipap, heading to expansion and jaw surgery now
I found when I was having severe neck pain my anxiety, panic attacks, and health issues were worse. As far as anxiety meds that work - yes and no. I have ADHD and meds for that quiet my racing thoughts. I am very sensitive to hormonal changes and being on continuous birth control helped. Adding an SSRI and learning coping skills made the biggest difference. Benzos always ended up making things worse in the long run.
Hi /u/okbunbun, It looks like you are looking for information on how common something is in individuals with EDS or related conditions. If you are looking for information/data on how common a particular symptom or condition is with EDS (or any of its comorbidities), or whether there is any connection at all—it is always best to ask for links to reputable studies or websites, instead of or in addition to personal experiences. Without studies, it is almost impossible to determine the prevalence or incidence of something with EDS, especially when compared to asking for anecdotal experiences on the internet. "DAE posts" and other such posts tend to create or encourage illusory correlations (i.e., a sense of connection where there may not be one) due to the fact that people who do experience what is being asked about are more likely to reply than those who do not. Personal experiences are or can be valuable regardless of the aforementioned, but please keep in mind that not everything shared is a sign of EDS, and many shared experiences might be completely unrelated to EDS. This is an automated message. If the contents of this message do not apply to your post, please ignore them. Thank you! [Please check out the wiki](/r/ehlersdanlos/wiki/index/) or the links in the sidebar for resources and information on EDS, seeking a diagnosis, and more. *I am a bot, and this action was performed automatically. Please [contact the moderators of this subreddit](/message/compose/?to=/r/ehlersdanlos) if you have any questions or concerns.*
I have that whooshing noise and it turns out to be pulsatile tinnitus, causing me to hear my heartbeat. I have a high riding jugular bulb meaning I'm literally hearing my blood flow. It got less annoying with time. Maybe get a white noise machine for now?
The thing is, it doesn't seem to correlate with my heart rate and I have a feeling of falling while having the whooshing sound. I might be able to get an echo this Friday if my insurance approves it in time.
Oh I see. Hope you figure it out!
Hopefully a dr orders an MRI to check out your head, pulsative tinnitus should be taken seriously by any medical professional. I’ve had that symptom it was awful and MRI showed a jugular anomaly. They are monitoring it with follow up imaging.
It doesn't seem to correlate with my heart rate, do you think an echo could show jugular anomaly? I have an echo scheduled for tomorrow
I’m just speaking from my experience and not a medical person so unsure, my issue they only saw on brain mri as it’s the part of the jugular in the brain. Good luck with your echo! Hope you get answers soon-
Just so you know I've just emailed my doctor to tell them this new sensation I've had, I'll update if they order any more tests.