DID I have did and i'm really struggling...

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Hope4Now

MyPTSD Pro
Hi to whomever reads this. I have DID. And lots of other issues too. Suitcase-full of diagnoses, all of which make sense but which make treatment WAY complicated and frustrating because treatments for one thing can exacerbate others.

I guess I'm looking for validation/hopefulness/connection? I don't know. Something. Right now I am feeling very, very hopeless and despairing. Fighting the urge to pack up my gear and disappear. Managing the suicidal and self-harm stuff pretty well, though. I've been hospitalized x4 and do not want to go that route again if I can possibly help it.

I have DID, PTSD (which is sometimes considered as being on the low end of the spectrum with DID, and sometimes different from DID), Bipolar Disorder, ADHD, Fibromyalgia, Chronic Fatigue Syndrome. I have tried a lot of different meds and supplements. Currently am on Valtrex for a re-activated Epstein-Barr virus, Lamictal for both trauma and bipolar, Strattera for ADHD, a bazillion supplements to support my adrenals and immune function, and about to start a detox for CIRS (mold toxicity).

I have a terrific therapist who I see 2x week, and a terrific (though rather eccentric) psychiatrist who I see once a week. I have found an integrative medicine clinic that is taking me seriously and treating me for things my primary care physician dismisses as nothing, and I am about to go to be evaluated by a pain clinic (second try at this, different place, but I suspect they will tell me all the stuff I am already doing). I think I have found a decent seeming new PCP. Every specialist I see tells me I am doing all the right things...that there's not much else they can offer. Have been told this for several years.

I have made some progress, particularly in understanding my issues, and developing a bit of self-compassion when I am in certain parts, but nothing else changes. I lost my career nearly 3 years ago; I had to bow out of all my volunteer work; I can do very little socially without either crashing out physically or emotionally or both. I have kind people in my life, including my husband and children, and I feel deeply grateful for that. I am re-making myself into an artist and writer (what I'd always wished for anyway), but I can do so little due to my symptoms that it all seems pretty worthless.

The current drugs I am on seem to have made me more co-conscious with my parts, and THAT is completely flipping me out--like watching my body be possessed and behave in ways very foreign to me. I don't even want to go back to therapy because it feels so wrong to "allow" parts to come out and express themselves even though I know this has happened before with less consciousness, and that they say this is important to healing the trauma.

I am having a terrible time of it. I know if I wait, things shift and there are moments when life like this seems livable. But then so quickly it all shifts back again. I am exhausted physically, mentally, emotionally, spiritually, by all of it.
 

Friday

Moderator
Lamictal for both trauma and bipolar, Strattera for ADHD,

Sooo....

ADHD and Bipolar disorder don’t co-occur. They’re considered sister-disorders, because so many of their symptoms overlap & it can be really difficult sometimes to determine whether it’s bipolar disorder or adhd without a medication trial. Although the med trial is pretty definitive.

The easiest way to think of why ADHD + Bipolar doesn’t happen together? Opposite meds.

- ADHD - Stimulants are soothing and clarifying
- Bipolar disorder - Stimulants kick people into manias & mixed episodes

- Bipolar Disprder - Antipsychotics bring manias down, antidepressants bring depression up, and then Mood stabilizers keep the whole thing locked within a normal zone.
- ADHD - Mood stabilizers, antipsychotics, & antidepressants tend to cause mood instability, psychosis, & depression. Not true for all people with every med, but as a rule of thumb, the same atypical / paradoxical reaction that happens with Stimulants tends to hold true across several other med classes.

Whenever I hear of someone diagnosed with both, or worse, medicated for both... I just cringe. Because no matter what the correct diagnosis is? They are in keeeerazy town, with symptoms caused by the medications they’re taking, and then taking more meds to deal with the symptoms caused by the other meds, ad naseam... because some idiot lazy should be taken out and shot moron of a half assed doctor went and diagnosed them with both things, instead of running a motherf*cking med trial. :banghead: I really, really, really hate these guys. They just drive me insane.

There are quite a few psych hospitals which have ADHD + Bipolar detox sessions (my local one does it a couple times a year) where they pull people off their insane cocktails, get them down to baseline, rediagnose, and then remedicate based on what their actual disorder & symptoms are. It usually takes a few months. Less for ADHD, more for Bipolar (cocktail meds always take longer to get right, than single meds).

I know this is off-topic for DID, but very on topic for feeling crazy, because with everything else you’ve got going on, a stupidity cocktail causing symptoms you don’t have is def something you don’t need. Best of luck.
 

Hope4Now

MyPTSD Pro
@Friday I appreciate your information a lot. My psychiatrist has actually been very careful for nearly two years on med trials, doing only one at a time so I am not on a cocktail of meds. I am extremely cautious about the meds I take as well, always aiming to be off them and just use my CBT and DBT strategies along with meditation and mindfulness and yoga etc., except it has been five years and I am still pretty unstable emotionally, and very sick physically.

I guess there is some general understanding that meds can work very oddly and unpredictably in people who have DID. I've done trials of antipsychotics (crash me out way too much), mood stabilizers (nothing), anti-depressants (surge in PTSD flashbacks). All one at a time, to ensure what works and what doesn't. The ADHD med I'm on (new) is a non-stimulant because she didn't want to have me surge further into mania and mixed episodes which I have been having for a long time. The lamictal, still a very low dose is an anti-convulsant and meant to help rapid cycling bipolar. I have tolerated both well, but am still uncertain whether they're helping anything.

I think your info that ADHD and bipolar are "sister" disorders and don't co-occur is really interesting. There are a lot of overlaps, I know. Everyone in my family has ADHD (inattentive type). The idea behind ADHD meds is to get the executive functioning working better. Sort of a booster to my non-med strategies for this. Sometimes the brain chemicals just trump behavioral effort. As for the bipolar, my psych took more than a year to diagnose it. My history and current issues do point to it. Her "theory" is that the bipolar energy fuels the dissociative issues. I have challenged this many times, but in the end I think she may be right. I hate meds, but I have exhausted myself in attempts to get more functional without them, so have come to accept that I need something to help me--hence my agreement to try different things.

What seems to be happening now is that I have more body awareness of myself in space and time, and more co-consciousness with my parts. And I think maybe that is what is destabilizing me most of all.

That said, I will continue to be cautious about the diagnoses and the meds. Thank you.
 

Keen

MyPTSD Pro
Sorry you're going through so much right now. I can totally understand you feeling exhausted from it all. Hope is hard to have when things are difficult for a long time. All I can offer in way of encouragement is that when I look back, I am always grateful I didn't give up. Good things have happened to me that would not have happened had I give up. I hope things will start looking up for you. There are good things ahead!
 

Sideways

Moderator
Long before I got diagnosed with DID, I got diagnosed with Bipolar II. I had that diagnosis for ages, and was medicated for it (lithium) reasonably successfully.

Switch forward a few years, to a new pdoc who diagnosed me with DID - the working theory is now that probably one of my parts is hypermanic. Which has meant addressing that part’s coping strategies directly, and without specific medications. So, one of my parts may be Bipolar, but the rest of my system isn’t. Which is why there have been times in the past where Bipolar seemed like a very accurate diagnosis, but at other times just doesn’t fit.

I totally get the overwhelmingness of having more awareness of your parts. It does get easier. In the meantime, something worth considering is whether some of the mental health symptoms you get may be specific to an individual part. It’s surprisingly common for one part (and not the whole system) to have physical or mental health issues that are only apparent when that part is active.

That’s one possible explanation for apparently contradictory illnesses occurring together. Probably the most common example would be when you get a Major Depressive Episode, but while you are very much depressed, many of your parts won’t be (like, at all).

I’ve found that anti-psychotics (quetiapine) have helped keep a lid on my parts to a large degree, which makes it more manageable. But it also makes therapy with those parts mpre difficult. So it’s been a case of veeeeery slowly reducing the quetiapine so that we slowly get access to different parts in a more controlled way.
 

Hope4Now

MyPTSD Pro
Thank you @Ragdoll Circus .
I think you're right about the whole thing with parts having specific issues. It's pretty clear this is the case with me--especially with the major depression stuff when "I" don't feel depressed at all. Wild switches. Not sure about the manic stuff--mostly I have mixed episodes with rapid (ultra rapid cycling) to use the bipolar language. I'm not sure whether this is just my constantly scrambling noisy parts vying for outage, or actually some underlying bipolar. I have a history that points to bipolar, but then again I have had DID my whole life too without even knowing it. Just thought I was weird. Anyway, in a desperate bid to get more stable so I can actually DO the trauma work I need to do, I have agreed to keep trying on meds to see if something can calm down my supercharged internal system.

Mostly no meds have helped me. According to my first psychiatrist, meds can work really variably with parts in DID and unless all parts are onboard with it, they can block it, or your body can get very strange effects. (I nicknamed him Mr. Famous Psychiatrist because he is pretty well known, but I didn't like him even though he was smart). For the first time in three years though, this particular combo of meds seem to be helping some even though I feel crazier and more unstable because of the growing co-consciousness (I think this is what is happening). At least now something is allowing the klonopin to work if things get bad (it didn't used to do anything). I was on huge doses of quitiepine for a while but it didn't help except to make me feel like I was living in quicksand. I am glad to have ended that. Glad it helped you, though.

It seems like it is a fine balance we have to strike...enough meds to help calm the parts enough to do the work...but not so much that you get numbed out or spaced out or shutdown. I hope your veeeerrry slow downdosing of meds gets you where you need to be...all of you. :)

Thank you again for your helpful response. I'm in a better place today than I have been in the past few days. Still utterly freaks me out though to have some sort of present consciousness vaguely in the background when a part is totally out. Especially a part that is very unlike my usual functional parts. My therapist seems to think that what is happening is good, so long as some of these parts can stay contained in my work with him, or when I am alone in a safe place. Think I've entered a whole new phase of this hellish "healing" process!
 

pixel

MyPTSD Pro
Still utterly freaks me out though to have some sort of present consciousness vaguely in the background when a part is totally out.
How long's this been happening?

Use the co-consciousness to learn more about the part, if you're interested.
In my system, co-consciousness occurs when life is less stressful, and provides an opportunity to knuckle down into solid therapy.
Much prefer co-conscious living, than massive chunks of lost time.

You can get used to co-consciousness :tup:
I hope I'm not being dismissive, trying to share what may help you
 

Hope4Now

MyPTSD Pro
@pixel I don't feel like you're being dismissive at all. The co-conscious stuff has been gradual, but with one part that's working with my therapist, there has been this giant change and the part is out pretty consistently. The co-consciousness kind of comes and goes. Therapist trying to get the part/me to a point where I can process one specific memory but there are huge blocks that I just can't seem to break through. I'm meant to be present in my body here/now at the same time as being with the part. Makes me dizzy and nauseous.

I have a question for you, if you're willing to answer. You say co-consciousness provides an opportunity to knuckle down into solid therapy. What does that look like for you? Does the part you're working with talk to the therapist directly with "you" there too in the background listening/watching, so you remember things from the session? Do your parts struggle with figuring out who to believe/trust--the therapist or the other parts who are sending off alarms and trying to bar the other part from coming out? I know DID experience and therapy is different for everyone, but I am longing to hear more about what therapy (and co-consciousness) is like for other people!

That is what is happening to me and it is very upsetting for a lot of other parts, especially my intellectual and watcher parts who are usually the ones who interact with therapist and prevent any emotion/filter out what happened to other parts. There's all this backlash from uset parts and worse from other protector parts who are very angry. And yet somehow, this young part is being allowed to "come out" whilst I have some level of awareness. It feels like a vertigo of being, and leaves me totally wiped out afterward even though the young part seems to feel better and better. I just don't know what to make of it. Makes me feel crazier than ever.
 

pixel

MyPTSD Pro
You say co-consciousness provides an opportunity to knuckle down into solid therapy. What does that look like for you? Does the part you're working with talk to the therapist directly with "you" there too in the background listening/watching, so you remember things from the session?
When I'm co-conscious with another part who is out, my experience is of being in a room inside my head and I can see through my eyes — like a huge window — and see my body moving but I'm not doing it. I see normally, but hearing, speaking and touch are distorted, and memories are vague and unreliable. l can remember my part throwing things on the floor, but don't know why it's happening.
The reason I say this is the time to knuckle down with therapy, is because for me, co-consciousness occurs when we are feeling relatively safe, therefore less symptomatic. This makes it easier for vulnerable parts to work with my therapist.

Do your parts struggle with figuring out who to believe/trust--the therapist or the other parts who are sending off alarms and trying to bar the other part from coming out?
Good question!
Fronting doesn't occur based on trust, personally. It just comes down to the practical decision of the part who functions as a gatekeeper. If that part trusts the therapist, then littles may share in therapy time; if a social situation arises, then the appropriate part is sent forth, etc.

leaves me totally wiped out afterward even though the young part seems to feel better and better.
Hell yeah!
I've left my therapy sessions much earlier than time due to the physical fallout.
and the better your young part feels, the less therapy they might require, which takes less toll on your body.

It is interesting your protector is angry about your young part emerging, and yet doesn't seem to prevent it.
Those dynamics are worth exploring, perhaps.
 

Anarchy

MyPTSD Pro
Epstien-Barr on top of all the rest! You have my full sympathy.

It took me out of action for a good six months.

I had Three months in bed, everything hurt and ached, I had next to zero energy. Just putting the kettle on was so much effort that I needed fifteen minutes rest. My head was too fuzzy to remember the pages I'd just read.

Then 3 months of gradually gaining energy. I'd feel ok and go to do something, then it was like walking into a wall, suddenly my energy would completely go.

My white blood cell counts were messed up for about a year afterwards.

The only thing that did help was an Irish herbalist, Sean Boylan, at dunshaughlin, County Meath (he's best known as gaelic football coach for Meath, and international rules coach for Ireland), he's got a good reputation for helping with the post viral syndromes resulting from Epstien Barr, and also with treating things like chronic brucellosis infection (I've got a friend who had that for years, It's horrible as well).

Chronic fatigue, fibromyalgia and depressions are all potential after effects of mononucleosis from Epstien-Barr

Hoping that things start to improve for you soon.
@
 

shimmerz

MyPTSD Pro
I am not sure that I have much that is valuable to say. I don't officially have DID, but a few people, including you, swear I have it. So here we go on the co-conscious thing.

My child (the trapped, has no idea where to go and how to keep safe child), is completely manic. She is trying to figure out how to keep safe. I, myself am not manic. Because I am co-conscious, I can observe that when the child is trapped, she races in her mind and cannot move her body.

I wish I had known better what to do with my co-consciousness. Perhaps I wouldn't have spent all of these years in a constant state of catatonia. Which I can actually define as my head being so manic that my body couldn't move. All energy went into feeling safe.

Now, I am not certain that I went through an 'uncomfortable stage' of my co-consciousness, because there was actually a very calm part that was literally trying to help the child. That calm part directed the child as to how to 'fix' the catatonia. It took a long time, but then again, I didn't know enough to use that co-conscious part as a 'child coach', so to speak. And I firmly believe that, for myself, I am co-conscious because there was a strong part that knew exactly what to do with the child. How to ease her. How to talk to her.

So maybe this is a little premature feeling for you, but have you been able to tune into your newfound ability so that you can converse (actually I don't converse, I use imagery when co-conscious because most of my 'parts' were preverbal) and offer the part that is coming out something soothing that is important perhaps to you? Will she come to you if you use imagery? Does she like Cinnamon Toast Crunch cereal? Can you invite her to be with her for as long as she is comfortable? Maybe a teddy bear?

As I said, not sure if this is helpful at all. I miss you my friend.
 
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