Derealization, Depersonalization - Me No Want It!

[Mikey69]

Hi all,

So, as some of you will know i'm new to all this Dyssy stuff. I started getting weird new symtoms some two years ago, which started slowly in minor ways, and they have developed over the past two years to overtake my life!

One diffuculty i had when dealing with GPs was being able to explain some very strange 'head symptoms', changes in consciousness, etc.

After much research and descriptive writing in my health journal i came accross Depersonalisation/Derealization disorder.

Ths was it! This is what i was experiencing!

i was just wondering if anyone else on here has experienced either/both of these?

Cheers in advance,

Mike

[dancer65]

At my worst a year ago I felt like this most of the time I would say a sentence that didn't make sense at all , did thigs automatically and then wouldn't remember doing it I would Find myself in a room i didn't remember getting there . Now on bad days I feel detched and my husband will tell me you are not feeling well as I repeat myself or I shut down mentally so I am unaware of what's going on around me. He says I look like I am in a trance. I put that down to concentrating so hard on trying to get the symptons under control, well that's my excuse,

As I say this has improved with time I hope it does for you too .

[statesof]

Hi Mike, I have depersonalization disorder. For me the depersonalization and derealization were my two worst symptoms when I first got sick, the POTS symptoms were not real even a problem at that time. My first 4-5 months of being sick the depersonalization was awefull, but the derealization has typically been more of a symptom over the years. One of my medications helps both of them thankfully, but yea it's one of the worst experiences I've ever felt; tons of brainfog, feeling so detached, and everything looking very daydream or picture like, and just feeling detached from my emotions even though they were still there, it's definately a strange form of suffering for sure.

[headhunter]

States of, describes it perfectly. Weird part is for me, this came years before I got diagnosed with POTS. It passed for me, but once in a while, I still get it. It does get better. I never talked to any professionals about it .

[lewis]

Hi Mike, I have depersonalization disorder. For me the depersonalization and derealization were my two worst symptoms when I first got sick, the POTS symptoms were not real even a problem at that time. My first 4-5 months of being sick the depersonalization was awefull, but the derealization has typically been more of a symptom over the years. One of my medications helps both of them thankfully, but yea it's one of the worst experiences I've ever felt; tons of brainfog, feeling so detached, and everything looking very daydream or picture like, and just feeling detached from my emotions even though they were still there, it's definately a strange form of suffering for sure.

I had wondered what meds they use to treat it?

[SarahA33]

Lewis, I'm planning on talking to my pots spec. This week about provigil. I've heard some really positive things from friends w/ pots who take this for cognitive issues. Vanderbilt is currently doing research regarding this also.

[lewis]

As part of this does anyone have the experience that when in public that everyone looks familiar? Just about every face I see I think, where do I know them from? It doesn't happen all the time but when I was reading about derealization it kinda made more sense to me.

[statesof]

Hey lewis, I think overall depersonalization disorder seems to be pretty impervious to most medications, at least when studying one medication trial across a group of individuals. I know lomotrigine and ssris have been studied for this, and Dr. Abraham who sees patients with the drug induced form of depersonalization disorder (he refers to it as HPPD) has his own medication trails going, which I can't remember exactly but I think he tries patients on sinemet and an antisiezure medication, and then there is a psychiatrist in New York, blanking out on her name as well, who from other patients online I read prescribes a tricyclic antidepressant, again cannot remember the name of it but it is not amitriptyline or nortriptyline. Most of those doctors are sited on many of the depersonalization disorder scholarly articles. For me amitriptyline has been immensely helpful, but I've also read about other patients who it made them much worse, I think it's a bit like POTS in that each person responds very differently to each medication.

[Mikey69]

Hi All,

thanks for takng the time to read my post and respond :-)

It's very interesting reading your experiences of this weird symptom.

I've awlays been a 'happy go lucky' type of extrovert!! It keeps me sane through all this - if you excuse the pun.

i first experienced derealization with the onset of Dysautonomia some two years ago. Thankfully it was only very mild back then. it used to make me feel somewhat detached from the rest of the world/reality. I also had - and still have pretty severe brain fog/impairment.

Over time the detached sensation became more profound. I honestly didn't know what it was, and so assumed it was just a weird new symptom of Dysautonomia or IBS.

It was happening every day for a while and that's when i began calling it a 'dyssy fit' - i like that, so i'm sticking with it!

In recent months my Dyssy fits have further develped to include Depersonalization too. I HATE this feeling! It's always combined with Derealization and it just makes me feel lke an empty shell inside. There's just nothing - no emotion of any kind, no feelings, it's like i've become an automaton or a robot or something. I can think pretty clearly, am relatively coherent, etc. But i just don't feel human, i don't feel anything! Fortunately these sensations have only been short lived - perhaps a few hours at a time. When they occur i just keep telling myself that they will pass, it's temporary, etc.

I should point out that i have never had any low mood/depression issues, mental health problems, etc. I'm deeply spiritual, i meditate frequently, love who i am, etc. In fact, i'd go as far to say that i'm very happy, despite all of the health problems.

I honestly didn't know what was going on for over a year. I was beginning to wonder if i was getting depressed or something.

After a LOT of painstaking research i finally came across Derez/Depers. and it all suddenly made sense.

Now i'm on a mission to find ways to combat it's effects. I'm struggling with the derez, because i haven't found anything to shake off the detached sensations. I try to keep myself busy and engage in sensual activities - something that uses my body andor senses.

i haven't had a Depers episode in over a week now, but i am working on the theory that if it makes me feel inhuman, unemotional, dead inside, etc. then i have to find ways to remind myself that i am a functioning emotive alive being! So, i'm thinking sensual activities again - nice baths, quality time with my partner, being outdoors, etc. Anything to remind my senses that they are alive and working. Hobbies, fun tasks, etc.

I'll let you know how it goes :-)

[Trish1902]

On 1/24/2016 at 1:47 PM, statesof said:

Hi Mike, I have depersonalization disorder. For me the depersonalization and derealization were my two worst symptoms when I first got sick, the POTS symptoms were not real even a problem at that time. My first 4-5 months of being sick the depersonalization was awefull, but the derealization has typically been more of a symptom over the years. One of my medications helps both of them thankfully, but yea it's one of the worst experiences I've ever felt; tons of brainfog, feeling so detached, and everything looking very daydream or picture like, and just feeling detached from my emotions even though they were still there, it's definately a strange form of suffering for sure.

I was diagnosed with dissociative depersonalization/derealization disorder well before my POTS diagnosis. Actually until reading this thread I had no idea the two could be connected except that my dissociative eposodes were worse when my POTS was flaring. I didn't have much luck treating it with medications, I have had most of my success from using cognitive behavior therapy, meditations and probably now that I think about it, bringing my POTS better under control. Good luck. 

[ishaqamina]

I was dx with pots a few years ago but was suffering with it 5 years before my dx.

i've recently been diagnosed with did ( dissociative identity disorder)  formerly known as multiple personality disorder. 

I always find my pots symptoms flare up drastically at the time of my dissociative episodes. 

 

 

[angelloz]

I had this very mildly at the beginning of my autonomic disorder. Everything seemed slightly off. Certain stores and locations were worse than others. I was not quite fully there. Overtime it has reseeded.

[dizzyape]

My Dys symptoms started with my stomach with gastroparesis like symptoms. I then would occasionally get dizzy spells and that disconnect/dreamlike sensation. How does everyone deal with this? Have you found anything that helps it to improve? I hate when it happens when I'm out, it makes me not want to leave the house. It's such a scary sensation.  For two years now doctors have been telling me I just have anxiety. I'm glad to finally be getting answers but I would love to find relief from these symptoms!!!