Becoming Significantly Worse

[Kassandra]

My PTSD (which developed almost exactly two years ago) was dumped on top of a pre-existing generalized anxiety disorder/panic disorder/depressive disorder (all of which developed five years ago...the result of genetics, it seems).

I can't say that the past two years have been particularly easy, but I held myself together the best that I could. I succeeded academically and in terms of my career. I had a plethora of close friends, and didn't have difficulty socializing or doing things outside the house; at least, not any excess difficulty (the anxiety does makes things challenging at times).

In October, I decided to try to move two hours away to a different, larger city for school. I didn't realize that large cities were, in fact, a major trigger for my post-traumatic stress. I was completely retraumatized, despite only staying in the city for three nights before returning home. Since then it has been a whirlwind of psychiatrist appointments, meetings with three different therapists who all specialize in different areas, medication trials (and failures...seems I'm allergic to everything!), etc. etc. I've put in a concerted effort to pick myself back up and yet...

I am getting worse. I think there is something to the notion of "it must get worse before it gets better", but even my primary therapist, whom I have known and worked with for the past five years, is expressing concern that I am still regressing in progress.

I get myself up out of bed every morning with the hopes that I will have a decent day. If I've got one thing going for me, it's perpetual hope and resilience. I am trying not to have expectations, but I am surprised that I haven't seen any improvement.

I'm working on EMDR with one therapist (which actually seems to be exacerbating my symptoms), my psychiatrist says that we have literally run out of medications to try. I'm even going the alternative route and doing acupuncture, trying herbal remedies, etc. As a general principle, I am quite physically active and eat healthy (habits I developed when I only had GAD).

I can't even pursue my hobbies anymore. I feel more listless and hopeless than ever before. I'm an avid reader, and I can't focus enough to even read a sentence of any novel. I'm quite a video game enthusiast, but I can't bring myself to even begin the newest game in one of my favorite series. Just about all I can do is exercise, and it's more out of habit than anything. I've been trying to retrain my thoughts, and focus my energy on positive thinking. I've definitely managed to do more for others these past few months than ever before...at least I'm making my friends and family happier, though I can't seem to help myself.

It's just quite frustrating! I am doing my best, trying every avenue of healing, opening myself up to options that I wouldn't have considered before...and crashing at an alarming rate. At this point, even my therapists are talking about game plans should I not ever "get better".

Does anyone have any suggestions or thoughts or encouragement or...anything? Has anyone experienced something similar? This just seems quite absurd.

 

[seedling]

First off, hang in there. I think it's too early to go the "should I not ever get better" route. Your journey is yours alone and will have its own twists and turns.

You are exploring every avenue for yourself and with being so open to different treatments you are likely to find one - or a combination - that will help over time.

One thing that got me curious in your post were the two following things:

I succeeded academically and in terms of my career. I had a plethora of close friends,

and

I've definitely managed to do more for others these past few months than ever before...at least I'm making my friends and family happier,

Are you a person that draws energy for yourself in being around and doing for others? These statements give me the idea that energy is being spent outside of yourself, even now in your most difficult time.
Is what you're giving being reciprocated? Are the relationships meaningful to your life of recovery? You didn't say what your trauma was or if it was related to people you are with now. Don't mean to judge you or those in your life in any way.

My own journey has been just the opposite - I withdrew from those I care about and now that I am better I can work again, and do things for others. This brings me happiness, now, to be able to give more. Some of the people that I thought I was close to before are not around much anymore.

Congrats on keeping your hope alive :)

 

[joeylittle]

even my primary therapist, whom I have known and worked with for the past five years, is expressing concern that I am still regressing in progress...I'm working on EMDR with one therapist (which actually seems to be exacerbating my symptoms), my psychiatrist says that we have literally run out of medications to try.

You need new doctors, I think.

Have you had an open and honest talk with your primary therapist about changing to a different one? If you haven't, I'd suggest you do. I think after five years (even off and on), if the therapist is actually verbalizing concern that you are not only stuck, but regressing - the next statement should be "and here's what we are going to change in order to address that."

Is that one the same as your EMDR therapist? If not, what does your EMDR person think? Can they give you any kind of projection of when they might have gotten you through all your targets? (it does get worse before it gets better where EMDR is concerned, generally)

And I'm really kind of shocked at your psych, and wondering if you maybe didn't understand exactly what they meant or they weren't being clear? First, it's really hard to run out of medications to try - even with allergies, I think. I'm not disbelieving you, I'm just saying that if this has only been since October, I wonder if anything has had a chance yet. Second, your symptoms are a moving target right now - have they talked with you in-depth about which symptoms they are working on treating? And third, if that's their point of view, go find someone who wants a challenge. A psych who starts to throw up their hands after 3 months isn't working hard enough (in my opinion).

 

[Kassandra]

@joeylittle, I've only been working with THIS psych for three months, but worked with someone different prior. I have tried every SSRI available in the past five years, and they cause me to stop breathing (I've ended up in the ER a few times as a result). Then we went the SNRI route, and I broke out in hives consistently. Wellbutrin exacerbated the anxiety, the atypical antipsychotics knocked me out even at a low dose, buspar and lamictal and other less-common drugs had zero efficacy, and the list goes on and on. I even tried a couple of these more than once out of desperation, but alas....

My body is perhaps too sensitive to these chemicals. I try to give them time to kick in, but a lot of my allergic reactions are so strong/potentially life-threatening that my MD takes me off them eventually...especially when the "not breathing" thing kicks in with the SSRIs.

And I shall reply more in-depth when I'm not trying to be articulate via iPhone at 8am haha.

 

[joeylittle]

Gotcha. Dumb and very specific question: have you tried Latuda? It was recently approved for more than only bi-polar, and seems to be the latest "oh wow look it works".

I'd still say, talk to your therapist about making a change. And look into some of the alternatives to meds (for the recent depression). I had good success with TMS, there's also vagal nerve stimulation and ECT, which is a whole other kettle of fish. If you can get TMS, I'd really advocate for it.

 

[Chava]

I crashed hard and fast less when particular triggers arrived, and more when I had lots of daily life stress and my coping skills stopped working in a bad way (my body just started falling apart). I thought I was holding everything together...but I was holding it together badly I guess. Meds haven't worked for me either (I'm only on small dose of pain meds and muscle relaxants as needed...and sleeping meds). Not sure if you have serotonin syndrome going on or, like you say, bad allergy...scary, no matter what. So sounds like serotonin type pills aren't going to be okay. There are other options, though I don't feel equipped to mention. Just know that's not the end. SSRIs can be really helpful for some people but I doubt they cure anyone's ptsd anyway...its more about managing symptoms and being able to do the work.

Is your therapist helping you with grounding stuff or tools to get through the present? Can you meet more often or add more resources?? Any groups or a day program (partial hospitalization if you need help stabilizing)? Nothing wrong with more help or safety when needed.

I'm not loving that your therapists would make any sort of comment about what if you do not ever get better, if I understood that right. Not sure about context or length of "ever" in this case. That sounds like a statement I'd beat myself into a hole with. I don't need it from others. I had a doctor (who barely knew me) tell my parents that they should probably prepare to bury me. Well f*ck him because that was many years ago and I've lived a lot since then and just found better help in recent years when my last self-destructive coping skills stopped working for me. I feel hopeful. It does get better. Try not to worry about "what if" and the far off future. You're struggling now and I know how hard it is when every minute feels like hours. So whatever helps for right now is good. You can survive this and get better, even if it's day by day or minute by minute for now. You've made good steps in getting out of bed and asking for help.

 

[Kassandra]

Thanks everyone! It always amazes me that forums like this exist and people are so supportive...even though we all have different struggles.

I meet my primary therapist about twice a week as is...before my recent retraumatization, we would only meet maybe once every three weeks, but I seemed a lot more stable back then. I think the biggest issue is that I struggled with PTSD for two years largely on my own. My family and friends scoffed at the diagnosis, and said things like "You can't have PTSD because you never fought in a war" (for context, I was sexually/emotionally/physically abused and financially extorted by someone whilst I was living in a foreign country for six months...it was pretty nasty). During the retrauma, my parents witnessed my complete crash and finally came to terms with the diagnosis.

I realized that I had never really allowed myself to "fall apart" initially, because my diagnosis and symptoms and feelings were being consistently invalidated by those around me. I was struck by a line from the recent Hunger Games film...something along the lines of "It's easier to not fall apart than it is to put yourself back together if you do". It's so true!

I'll look into TMS. It's not something that I was familiar with before today! It's at least comforting to know that there are some routes still available that haven't been tried. :)

And @Chava I cannot believe you had a doctor say such a despicable thing! I worry that some professionals exacerbate the problem.

It's frustrating coming to grips with the idea that I won't necessarily get to live out this life that I always dreamed of. I'm supposed to begin classes again in January, and I'm just not sure I can face going to campus (thankfully, there are online options...but I hate being isolated). Even this morning my symptoms feel worse than yesterday morning. Part of it may be due to the holidays, which seem to bring out the worst in people in general.

I don't know. One foot in front of the other, I guess.

 

[Chava]

It's frustrating coming to grips with the idea that I won't necessarily get to live out this life that I always dreamed of.

PTSD (or nearly any diagnosis, for that matter) doesn't have to mean giving up dreams, unless you want a reason to back down...or are seeing your dreams in a different, more worldly scope (like the music major who realizes they might not be an opera singer at the Met, but re-routes their dreams and does not give up on their talents or things they love).

If feeling pressured, just focus on the present and taking care of that. I achieved my major dreams, even when I was much more messed up. I think my dreams were what helped me keep going...absolutely no reason to give them up. Give up all the sh*t you don't need, but not the stuff you love.

Yes, some doctors are terrible. I'm glad am I at place where I have a decent connection with a doctor and nobody is feeling hopeless about me...most of all not myself. Hang in there. This isn't the end. Crashing is really painful but it's where we start making important changes. For me they were big changes, but I needed support and ways to make them gradually, subtly, but consistent. I've gone through a couple of these bigger crashes and come out more whole than I went in. Even if you need to take time off from school, nothing is over. I took a good year or two off, in and out of hospitals. Graduated, found my dream job. For a while I just thought it was over. It wasn't...my focus just shifted for a while, as it had to. Got healthier.

 

[seedling]

I agree with @Chava on not having to give up your dreams. I am doing things now that I never dreamed of or planned on just a few years ago. My life has opened up and I am getting to a point, hard PTSD work notwithstanding, that I can't wait to see what happens next.

I heard it explained like this once, not in the context of having PTSD, but in the context of having a disabled child:

When you are pregnant and planning on having your baby it's like you are planning on taking a trip to France. You find out all about it, pack for it, learn the language and dream about what you will do there. When your baby is born with a disability it's like the plane takes a detour and you land in Italy. Not the country you learned all about and were expecting, but a beautiful place none the less even if you don't know the language yet.

I think PTSD is kind of like that. Life takes a turn and it's not what you expected. This time you are in now is what it is and it won't last forever.

Not sure how often you have acupuncture or what kind of relief you were able to get from it. I went initially three times a week and took herbs three times a day. My herbal formula has gradually changed as my condition has changed. I used the herbs and treatments as my medication.

The treatments gave me a deep rest and helped me release the frozen emotion. It also gradually let me be able to sleep and turned down the anxiety.
I found the treatments gradually built on themselves.

I'm sorry that you were scoffed at - especially when you had a diagnosis, it's hard enough without having to that kind of denial (is that the right word?) thrown at you.

Take care

 

[Chava]

p.s. I wonder where the idea of not getting to live your dreams comes from...is it that you can't tolerate anything right now? Because that happens and it's really hard to see beyond it. Can also be the anxiety/depression part. Also, trauma can foreshorten our sense of future or even dull our imaginations or capacity to dream. But that's why we get help, appropriate therapy, etc. Hang onto whatever you enjoy, even if just a little as you get through this really down time and find new support and direction.

@seedling I finally want to try acupuncture over my holiday (for pain...but would really love if it could ever help with sleep). I am starting to appreciate the small measures that make a difference over time.

 

[Nam]

I hope you find a solution. If you come at it with all kinds of tools, you will find a middle ground that is more suitable.

I take Wellbutrin, and it does make me anxious at times. It took a good 3 weeks of taking it continuously for it to even out. Eventually, they took it down to half the dose. And then they put me on the 12 hr..so it's half that. And I like this combo. It was the same with Seroquel when I took that. I was dividing the small damn things into eighths! So, please mess with the dosages and the times of day you take it. Wellbutrin worked best for me in the morning, no coffee (I break this now...tsk, tsk), and no decongestant.

I think you need to find a doctor who thinks of drug combos as a challenge. And you need to be resilient while the trials are going on. Try to keep a log. Write down how you feel at certain times of day. Rate your symptoms on a scale. And work in other ways: diet, exercise, meditation, etc.