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Discussion Starter · #1 ·
Hi everyone,

I'm 31 yo and over the last 12 years I had 5 bouts of what I believed (until few weeks ago) was DP/DR. These bouts lasted anywhere from 3 months to 1 year. I had complete recovery between each bout and led a totally normal life.

At the onset of every bout I consulted multiple doctors, they all told me "it's just stress" and after a while I convinced myself that it was indeed anxiety that was producing those weird DP/DR symptoms that we all know.

I was feeling awesome the past few years and unfortunately few months ago, out of nowhere the DP/DR came back full force. Over the weeks I started feeling worse and worse and restarted investigation on the issue, even though I was convinced it was anxiety, until I met an amazing psychiatrist who told me "Listen, it can definitely be anxiety, but I'd like you to check with an ENT and a neurologist to see if it could not be something else". And what did the ENT and Neurologist found out? That I have a condition called Vestibular Migraines.

Basically it's a specific type of migraine (without any headache) which causes the brain stem to be inflamed and to get overloaded. It produces ALL the weird DP/DR symptoms .

It can be triggered by food, by stress, by allergies, etc. and it's 24/7.

I lived the past 12 years thinking that I had psychiatric issue, that I was somehow a person too stressed. Which didn't really make sense cause I'm not easily scared (I travel the world on my own, do extreme sports, etc And I'm pretty relax when I'm recovered).

This post is not to say that your DP/DR is not an anxiety issue or that you have a neurological problem, not at all. But it's just to say that DP/DR can also be the product of a neurological issue, or an In-Ear issue (or many other health issues).

Therefore, if you don't feel deep down that your DP is "only" anxiety, advocate for yourself and go see different doctors. Many doctors are very quick to say "it's just stress", and sometimes they are right, sometimes they are wrong like in my case.

Wishing you the best!
 

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That's awesome I am glad you found the answer to your issues congratulations! Can I ask how they fixed this problem for you then? Medication or... I don't know what else lol.

I certainly have inner ear issues of some sort though, my ears constantly pop when I swallow. Even now I just tested it and they crack/pop, like there is constant tension in there. Weird, but intrigued to know how the brain stem gets inflamed. Also hearing/following conversations is very difficult. Did you have symptoms like that or issues with hearing? I will look into it some more thank you
 

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Discussion Starter · #3 ·
Vestibular migraines are hard to treat because there is no specific treatment developed for them. But many people recover and the main treatments are anti convulsant, medication for hypertension and very low dose anti depressants of a certain class.

Yes I had/have issues with my ears. If you have some I'd say it's a strong indicator that something must be wrong in your vestibular system. And MANY people who have issues with their vestibular system (like myself) experience dissociation.

Here is a pretty comprehensive list of symptoms that can be brought by VM: https://images.app.goo.gl/YHLWnvAmWHToDRm18

Hope this help :)
 

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Cheers dude really appreciate it. I have thought that it could potentially be involved but have asked my Dr for so much already. Although I have never seen a neurologist or ENT specialist, did they diagnose this through an MRI scan then? Did you have any symptoms of vertigo as I never had this except strangely the moment it started...
 

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Hi everyone,

I'm 31 yo and over the last 12 years I had 5 bouts of what I believed (until few weeks ago) was DP/DR. These bouts lasted anywhere from 3 months to 1 year. I had complete recovery between each bout and led a totally normal life.

At the onset of every bout I consulted multiple doctors, they all told me "it's just stress" and after a while I convinced myself that it was indeed anxiety that was producing those weird DP/DR symptoms that we all know.

I was feeling awesome the past few years and unfortunately few months ago, out of nowhere the DP/DR came back full force. Over the weeks I started feeling worse and worse and restarted investigation on the issue, even though I was convinced it was anxiety, until I met an amazing psychiatrist who told me "Listen, it can definitely be anxiety, but I'd like you to check with an ENT and a neurologist to see if it could not be something else". And what did the ENT and Neurologist found out? That I have a condition called Vestibular Migraines.

Basically it's a specific type of migraine (without any headache) which causes the brain stem to be inflamed and to get overloaded. It produces ALL the weird DP/DR symptoms .
It can be triggered by food, by stress, by allergies, etc. and it's 24/7.

I lived the past 12 years thinking that I had psychiatric issue, that I was somehow a person too stressed. Which didn't really make sense cause I'm not easily scared (I travel the world on my own, do extreme sports, etc And I'm pretty relax when I'm recovered).

This post is not to say that your DP/DR is not an anxiety issue or that you have a neurological problem, not at all. But it's just to say that DP/DR can also be the product of a neurological issue, or an In-Ear issue (or many other health issues).

Therefore, if you don't feel deep down that your DP is "only" anxiety, advocate for yourself and go see different doctors. Many doctors are very quick to say "it's just stress", and sometimes they are right, sometimes they are wrong like in my case.

Wishing you the best!
I agree, dpdr can come in many ways. I know for a fact mine was caused by anxiety lol but I do have moments where I'm completely fine and then feeling dp again. I do have ETD (Eustachian tube dysfunction) where my ears are filled with fluid which makes me feel more dp'd then I actually am, like feeling more trapped than I actually am because my ears are basically clogged (if that makes sense). Lol it's been about 10 months and I finally built the courage to go to the ENT last week and they confirmed there was fluid. So now I'm trying to fixing that
 

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"Migraine, the borderlands of epilepsy". That's the title of a recent British Neurological Study. I have suffered ocular migraines for 48 years. They began with temporal lobe seizures at age 17. I also experienced chronic vestibular disturbances

in the form of clicking, cracking and pressure changes similar to eustachian tube dysfunction. Those symptoms lasted more than 2 decades, and are now gone or not noticeable. I firmly believe that the noises in my ears were discernable from

the outside, with special equipment designed to detect them. They indicate a rare form of tinnitus which is caused by aberrant electrical activity in the brain causing mechanical movement in the inner ear. It took me 4 decades, but I

figured out the source of my issues and got an EEG to establish the pathology in my temporal lobe. I also have to thank the UK for their research, that established I am suffering from a rare epileptic syndrome which also

generated the affective disorder of major depression. These brain illnesses remain poorly understood by neurology, and totally misunderstood by psychiatry. Progress is slow. However, my local health conglomerate recently

opened an epilepsy clinic, and they will also treat migraine illness at that clinic. It is a brain thing.
 

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Hey anthony. I just read your story and my mind was blown. I struggled with vertigo and dizziness for some weeks before the DP/DR kicked in like a switch was turned on. In a week i am going to see an ENT. But i still got some questions.
I really don't want to bother you, but would you mind chatting with me?
Thanks in advance.
DPCat
 

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Vestibular migraines are hard to treat because there is no specific treatment developed for them. But many people recover and the main treatments are anti convulsant, medication for hypertension and very low dose anti depressants of a certain class.

[....]
It is interesting that some people recover from DP/DR using Lamotrigine, which is an anti-convulsant. Maybe there could be a link.

Anyway, thanks for for bringing up this post again.
 

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@Trith Exactly my thoughts. There is no real treatment for Vestibular Migrains, but a small dose of tricyclic antidepressants plus anticonvulsants are often prescribed for this disorder. Sounds to me like the Sertraline (which is in fact a tricyclic antidepressant) + Lamotrigine (anticonvulsant) combo which is seemingly helping loads of people here on this forum - without them even exactly knowing why?

As mentioned above, i am going to seek an ENT next week.

I am looking forward to getting prescribed the combo mentioned and maybe a beta blocker (also in the list of meds to help people with v.m.).

I will keep you updated.

EDIT: Added some info
 
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