Newbie with a basket of crazy

[WinterTidings]

Hi everyone,

I/we just joined up because.. Eh. Needing support/people who relate and such. Social media's alright, but the privacy is always wonky and the ability to compartmentalise isn't so great. Forums/IRC are better for this kinda thing, I think.

Anyway, yeah. Barrel of raccoons, etc. We have a long list of things, most diagnosed, some not (some by choice.. I don't want DID going anywhere near my medical record. :x). I keep thinking I've processed my abuse stuff and then discovering yet another delicious core of it under the next layer. Heh. My resolution this year at least is to not end up like 2015.. Too many near misses on suicide (we suck at it, it turns out), too much.. Retreating back indoors, not doing anything, not going anywhere.. Barely creating like we used to. So, yeah. I want to change. However, treatment-resistance is a pain on that front (in the 'my brain chemistry gives no fucks for your puny pills' sense, rather than 'my doctor thinks I talk back too much and all I got was this crappy diagnosis' sense). I took about 15-20 variations on antidepressants before throwing the towel in at hardcore-MAOIs (having to give up ADD meds, painkillers and basically-eating? Nah.).

Anyway, pluralwise there's four of us. We'll probably all stick our noses in here once in a while. I'm Whisper. There's also Wynn, Tri and Felix. We're fairly recently plural.. Had a breakdown last year and that did it, I think.

Also;

* Autistic

* ADD

* C-PTSD (not diagnosed yet but plain as day)

* General Anxiety Stuff that includes panic attacks, OCD symptoms, social anxiety.

* Chronic Pain from Ehlers Danlos Syndrome

* Depression-Dysthemia (Chronic/Severe/Treatment Resistant)

* Oh, we get psychogenic seizures, too. Trying not to be embarrassed about that.

Er. Anyway. Hi.

Edited January 12, 2016 by WinterTidings

[saintalto]

Self diagnosis is almost always a poor mindset. It's okay to suspect something and check in with the doc, but to diagnose yourself as having a disorder without the consult of a psychiatrist  strikes me as an unnecessary source of worry. You can request not to have something on you record if need be, but unless you have a medical degree, and then further specialising in psychiatry, you aren't in a place to be making decisions about what you do and don't have. There's a reason these people spend up to 10 years in school to get where they are. Google is your friend for a cake recipe, but it's a dangerous tool when it comes to psychiatric disorders with vague lists of seemingly applicable symptoms (which could often apply to anyone).

Question, are you diagnosed as being treatment resistant coming from the mouth of your pdoc? I guess it strikes a nerve because I wasn't considered to be treatment resistant for almost 10 years of the 12 I've been ill. It really takes time and a lot of failed medications to reach that point. It's not something I'd throw around lightly because you are frustrated with your treatment not working properly. There's just so much to exhaust first and if you become stubbornly resistant to trying new meds or being open to future treatment options in general, you do your wellbeing a disservice. 

[WinterTidings]

Nah, self-diagnosis is legit. I've had plenty of docs who don't know the back of their hand (the 'Googles 'Aspergers Disorder', turns around and tells me only children have that, and I can't possibly be asking to see a pediatrician.." story is my favourite, but then there's the 'what is this, a crossdresser thing?!' response to getting gender treatment, or the many, many times I've gotten the "Drugs are bad kids" lecture over taking a piddling amount of benzos. So many options..) Anyway, the long and the short of it is, you've got a condition the day you get diagnosed, and the day before, and if you don't get diagnosed at all. Otherwise only rich people and people in countries with subsidized healthcare would get ill. Anyway, there's a billion writeups on this stuff on the internet, so I'm gonna cut myself off here.

TL;DR; My psychologist doesn't feel qualified to diagnose PTSD stuff and I don't feel like spilling my guts to a rando.

Yes, I'm dx'd as Treatment Resistant.

Edited January 12, 2016 by WinterTidings

[saintalto]

10 minutes ago, WinterTidings said:

 

Ok then doc. You make the rules. 

Edited January 12, 2016 by saintalto

[TakeAChillPill]

Hello WinterTidings!

Welcome aboard!

I hope you like it here.  I am not good at greeting people, online or in real life.  I just hoped to make you feel like sticking around.  

There is a private PTSD section on this forum where you can talk about your history of abuse.  People like to add warnings to such posts at the top saying "Trigger Warning" so that other fragile people will not proceed if it might be a trigger to them.  I am sure you know all about triggers.

Good luck.

[WinterTidings]

Thanks! I appreciate it. And yeah, I.. Should do that, but not now, I think. That part of the brain's still tender after getting poked too hard last year. Knowing the option is there is very helpful, though.

[Sloane]

The main reason self-diagnosis is a sticky situation, is because certain symptoms of disorders mimic or overlap each other, and the wrong diagnosis leads to inappropriate treatment. It takes a trained and educated professional to sift out symptoms and causes. Unfortunately it often takes years to get an appropriate diagnosis because of various reasons, including shitty doctors.  The important issue is to identify the symptoms, and treat them correctly. 

WinterTidings, I'm sure you will find CB a reliable resource and support community during your MI journey. It's a complex situation with multiple/overlapping illnesses, even without being treatment resistant, and I think you will find solace here. If you have any questions or concerns, don't hesitate to contact an Admin or Moderator.

Also, I want you to know that "psychogenic" Non-Epileptic seizures is nothing to be embarrassed about. It is a real disorder which requires real treatment, and if you have any questions or concerns about NE seizures don't hesitate to post a topic or reply in the Seizure Disorders forum. 

 

[WinterTidings]

3 hours ago, Sloane said:

Also, I want you to know that "psychogenic" Non-Epileptic seizures is nothing to be embarrassed about. It is a real disorder which requires real treatment, and if you have any questions or concerns about NE seizures don't hesitate to post a topic or reply in the Seizure Disorders forum.

Thankyou, that's something we'd been worried about; feeling like we're appropriating the space of 'legitimate' people if we post on the seizure board. It's something that Whisper especially struggles with feeling ashamed/'who cares its not real' about, but recently been pretty severe, so.. I think we've had to come to terms with that a litte. I hadn't heard of that terminology (Non-Epileptic Seizures) before, is it preferred over psychogenic?

My experiences with this were mainly Wtf -> Wikipedia -> Psych, is this what it is -> Yep sounds like it -> Great. So we haven't done a whole lot of.. Meeting others with the condition or actually talking about it or suchlike.

[WinterRosie]

After five-six years of DiD not going anywhere near my medical record I recently ended up with it going in there. 

[WinterTidings]

Have you had any bad experiences since? We had an odd one where a doc tried to clam up on painkillers because we're multiple, before realising he had the wrong patient's file open. Kinda confirmed our suspicions that we'd rather not..

Conversely, any good ones experiences up? Better access to psychs, more understanding, etc?

[Sloane]

1 hour ago, WinterTidings said:

Thankyou, that's something we'd been worried about; feeling like we're appropriating the space of 'legitimate' people if we post on the seizure board. It's something that Whisper especially struggles with feeling ashamed/'who cares its not real' about, but recently been pretty severe, so.. I think we've had to come to terms with that a litte. I hadn't heard of that terminology (Non-Epileptic Seizures) before, is it preferred over psychogenic?

My experiences with this were mainly Wtf -> Wikipedia -> Psych, is this what it is -> Yep sounds like it -> Great. So we haven't done a whole lot of.. Meeting others with the condition or actually talking about it or suchlike.

NES is a legitimate disorder that needs legitimate treatment. And although it doesn't cause for Anticonvulsants, it takes more than ignoring it to successfully treat it. I understand there is a stigma towards NES, but like all MI, it is very real.

As for terminology, a lot of people prefer the term "psychogenic" (which just means they are caused by psychological factors) Non-Epileptic seizures (seizures not caused by electrical activity), versus "pseudoseizure" which implies it's a "fake" seizure or "non-epileptic attack" which tells you what it isn't instead of what it is. 

If you are having any kind of seizure (or any physical symptoms) it's important to see a Neurologist (or appropriate specialist) to r/o physical causes. I understand NES is often a symptom of trauma, but it's good to cover all bases to make sure there is nothing physically going on that needs addressed.

[WinterTidings]

21 minutes ago, Sloane said:

NES is a legitimate disorder that needs legitimate treatment. And although it doesn't cause for Anticonvulsants, it takes more than ignoring it to successfully treat it. I understand there is a stigma towards NES, but like all MI, it is very real.

As for terminology, a lot of people prefer the term "psychogenic" (which just means they are caused by psychological factors) Non-Epileptic seizures (seizures not caused by electrical activity), versus "pseudoseizure" which implies it's a "fake" seizure or "non-epileptic attack" which tells you what it isn't instead of what it is. 

If you are having any kind of seizure (or any physical symptoms) it's important to see a Neurologist (or appropriate specialist) to r/o physical causes. I understand NES is often a symptom of trauma, but it's good to cover all bases to make sure there is nothing physically going on that needs addressed.

Thanks for the reassurance & advice. We're aware of the legitimacy on a conscious level, it's just when we get hit by guilt/shame brainweasels (which is, well, multiple times a day) it tends to be one of the sore spots, and we're working on it not being so. Like pluralness, it's just taking time to sink in that we're not faking it for attention, even though we know that to be an irrational course of thought. It's nice to have the reassurance, though.

The only treatment suggestions I've found online are CBT/psychotherapy, antidepressants and general 'good living' advice. Are you aware of any others? (maybe something I should ask in the Seizure subforum)

Wynn

Edited January 13, 2016 by WinterTidings

[WinterRosie]

3 hours ago, WinterTidings said:

Have you had any bad experiences since? We had an odd one where a doc tried to clam up on painkillers because we're multiple, before realising he had the wrong patient's file open. Kinda confirmed our suspicions that we'd rather not..

Conversely, any good ones experiences up? Better access to psychs, more understanding, etc?

No. Nor have I had any good ones. I'm not big on going to the doctor on a regular basis, which causes its own sets of problems. 

[Sloane]

On 1/13/2016 at 7:06 PM, WinterTidings said:

The only treatment suggestions I've found online are CBT/psychotherapy, antidepressants and general 'good living' advice. Are you aware of any others? (maybe something I should ask in the Seizure subforum)

Wynn

Psychotherapy that specifically targets conversion disorders or specializes in trauma are the only treatments that I am aware of that has any real success. So no, I personally do not know of any other treatments. But absolutely, you are more than welcome to post a topic in the Seizure Disorder subforum. There are actually quite a few topics and discussions on PNES already posted that are worth taking a look through.

[WinterTidings]

7 hours ago, Sloane said:

Psychotherapy that specifically targets conversion disorders or specializes in trauma are the only treatments that I am aware of that has any real success. So no, I personally do not know of any other treatments. But absolutely, you are more than welcome to post a topic in the Seizure Disorder subforum. There are actually quite a few topics and discussions on PNES already posted that are worth taking a look through.

Thanks, that's useful info. I'll check out those threads.

Whisper