Complicated case of ptsd

[waterv1]

(I posted this in the wrong area but couldn't delete my first post, sorry about that!)

Hi there. I'm new to this forum but I wanted to ask for a bit of advice. This might be a bit long, but if anyone can help me I would really appreciate it. I was diagnosed with ptsd just this week, but I've had it for about two years. The problem is, my case is unusual, and I don't really qualify for exposure therapy.

The event that caused me to develop ptsd was a medication reaction. I took a common antibiotic in Spring 2015, and I had a horrible psychological reaction. It's very difficult for other people to understand; it was as if the fear center in my brain had been cranked up to levels that human beings shouldn't access. It was beyond fear. I believed that I was going to die. I was shaking, throwing up and almost passed out a few times, and it lasted for weeks, and the reaction returned twice afterwards. I have never, ever felt anything like that; it wasn't anxiety, it was just terror beyond words.

Afterwards, I became extremely depressed. I had developed a fear of death, I was going through a breakup, and I had a severe case of undiagnosed Lyme that left me bedridden. I thought that I was just depressed. I became suicidal, for a while. Since then, I've been treated for my Lyme, and I feel much better. I'm not depressed. But I'm not anything else, either.

I've found that I can't feel happy, I can't laugh, I can't feel angry. I can't connect with people at all, and I struggle to care about my friends. Even when I'm drinking with them and having fun and laughing, I can't feel a single thing inside. I can't make jokes. I've become quiet and dull. I have no motivation whatsoever, because I can't feel any sort of excitement or passion. I can cry, but I don't really feel sad. I feel despair in my mind, but I can't access the feeling itself. I was at my Grandpa's funeral today, and I could almost psychically feel my body shoving down the sadness and making me feel empty. I thought I was just depressed, or tired from the Lyme, but medication and therapy haven't worked.

The reason I'm nervous is because I don't know how this could be treated; there isn't an event to walk through, it was just a feeling. A feeling that I can't even imagine anymore. I don't get flashbacks, and I feel like I'm somehow not qualified to have ptsd. It sounds so stupid to other people, and no one can really understand just how horrific it was. I've lost 4 years to Lyme, and 2 years within that were spent emotionless. I've missed out on college, I've missed out on having friends, and dating. And now I can't connect with people even if I want to. Does anyone have any sort of experience with this?

 

[joeylittle]

(I posted this in the wrong area but couldn't delete my first post, sorry about that!)

No problem. We actually moved it for you, and just let you know that we had moved it.

I'm curious - the doc who diagnosed you with PTSD, did they address that drug reactions are supposed to be exclusions from PTSD diagnoses? I'm not certain that exclusion should technically apply in your case, because it is usually applied in cases of psychogenic drug abuse (as in, I had a bad LSD trip and now I have PTSD - the acid use would disgualify a PTSD diagnosis).

So, I'm wondering if you and the doc talked about this at all, and what they might have said.

I'm also wondering what they recommended as a course of treatment.

 

[anthony]

I think you should go back and talk with your diagnosing physician and whether they made such diagnosis correctly:

• Criterion H. The disturbance is not attributable to the physiological effects of a substance (e.g., medication, alcohol) or another medical condition.

You had a psychological reaction to a substance that caused psychological distress only. This is why criterion H exists in most disorders, except those specific to medications and substances. If your physician diagnosed you correctly, I suspect you would have less trouble trying to formulate a treatment plan like you are.

 

[waterv1]

No problem. We actually moved it for you, and just let you know that we had moved it.

I'm curious...

No, she didn't tell me much.. I've never heard that that would disqualify it, I can't find much info on it. She suggested mindfulness and EMDR as treatments, but she was unsure of how effective they'd be. I'm going to see her next week, but her specialtiy isn't ptsd (she's a cbt therapist), so she's going to refer me to someone trained in emdr. Still, there isn't really a traumatic memory to work through, so I have no idea what will be effective. It's been 2 years, so I'm scared that my emotions are permanently shut off.

 

[joeylittle]

Still, there isn't really a traumatic memory to work through, so I have no idea what will be effective.

Yes, this is the problem with it potentially being an incorrect diagnosis...

Was this doc actually qualified to diagnose? Psychiatrists and Psychologists (licensed) are always qualified; in some states in the US clinical therapists are also qualified.

Instead of being referred to an EMDR therapist, can you get a referral for a second opinion?

 

[waterv1]

I think you should go back and talk with your diagnosing physician and whether they made such diagnosis cor...

She said that it would qualify because I felt as if my life was in danger and that I was going to die. It was all of the intense fear of a traumatic experience without the traumatic event; it's not as if it were a bad drug trip. There isn't much research on it, the side-effect is almost unheard of; just a few minor studies on how it could lead to suicide. I don't really know how else it could be classified.

 

[waterv1]

Yes, this is the problem with it potentially being an incorrect diagnosis...

Was this doc actually...

She has a Ph.D. and she is a psychologist. My mother is also a therapist, and she agreed with the diagnosis, as she saw first-had how the event affected me. I'm going to see my Lyme doctor soon (he's also a psychiatrist) to ask him about it, but I really need to get into treatment quickly, and it's very hard to get an appointment with him. I have been planning to go back away to school in the fall for years now, and it would be difficult do that if I haven't even started on treatment.

 

[joeylittle]

It was all of the intense fear of a traumatic experience without the traumatic event; it's not as if it were a bad drug trip.

I understand that it wasn't the same as a bad recreational drug trip; but, for all intents and purposes, what you describe above is what happens in those cases. An intense fear of a traumatic experience without the actual event. The event is what separates it from PTSD.

Now - I'm really not saying that the diagnosis is wrong, none of us can do that. And the treatment might even end up being the same; many people have intense traumatic experiences and do not develop PTSD, but harbor high levels of anxiety, fear, panic...and those people can benefit from trauma therapy protocols.

None of this is to say that your suffering hasn't been real. It's more just to say that, you are right - this is a situation that isn't quite conforming to a PTSD diagnosis, and yet, seems to act like it. I'm only asking about the person because a better qualified diagnostician might have a better idea about how to approach your therapy, and you seem to be questioning whether EMDR will really get you anywhere. That's all.

I also understand the perceived difference between someone who takes a drug specifically to get high, and someone in your situation who was taking a medication in order to get better, and had an abreaction that was intensely terrible. That's partially what makes your situation seem not-quite-cookie cutter for anything in particular.

Diagnostic codes exist so people can be treated. Diagnostic protocols exist to provide what is understood to be the best possible management plan for that particular disorder. You may need a combination of diagnoses that include all your symptoms in order to really get the right therapy, including drug therapy if needed.

 

[joeylittle]

She has a Ph.D. and she is a psychologist.

Ok - then, you can have reasonable confidence that she understands how your situation fits within the parameters.

( we cross posted; so some of what I wrote, above, might not be relevant given this info)

 

[waterv1]

Yes, this is the problem with it potentially being an incorrect diagnosis...

Was this doc actually...

Also, I've just looked it up and doxycyline is actually being studied for it's effect on the fear center and people with ptsd; it's said to reduce fear. but for me, it was the opposite. So it's not unrelated; it seems to be two sides of the same coin.

I understand that it wasn't the same as a bad recreational drug trip; but, for all intents and purpo...

ok, thank makes sense, thank you. Side note, I've just looked it up (I haven't searched "doxycycline ptsd before) and apparently it's effect on the fear center of the brain is being studied in people with ptsd, so I feel as if it could be a special case. But I will seek another opinion to make sure the diagnosis is correct so I can get the proper treatment.

Ok - then, you can have reasonable confidence that she understands how your situation fits within th...

ok, im messing up all of the replies anyway lol. Thank you for your advice; I will look into more options.

 

[Jim711]

I struggled with some similar issues and difficulties with diagnoses as well. For many years, it never even crossed my mind that I might have PTSD. You see, I had many traumatic events over years, but the one that affected me most was the result of a bad drug trip (and the belief it was done purposefully!). There is now a discussion in the literature about something called complex PTSD. Prolonged medical illness as a traumatic event is within the scope of complex PTSD. BTW, a bad reaction to medication isn't necessarily a disqualifyer for PTSD IMO. The criterion "not due to the direct effects of a substance" means the symptoms of PTSD themselves cannot be due directly to a substance. As in, a person taking methamphetamine claiming they have PTSD would be hard to diagnose because the physiological effects of methamphetamine would be mimic symptoms of PTSD. Anyway, as long as you experienced a real threat of bodily harm due to a substance or not, this is a criterion A stressor IMO. However, what you state in your post might warrant a read into complex PTSD. It also sounds like you had some panic attacks. This often accompanies PTSD.

 

[anthony]

There is now a discussion in the literature about something called complex PTSD. Prolonged medical illness as a traumatic event is within the scope of complex PTSD.

Sorry Jim, but this is incorrect. CPTSD is "about" to be a diagnosis once the ICD 11 rolls out. The criterion for CPTSD is that you first meet PTSD. The CPTSD criterion for diagnosis only adds a few specific features to the precipitating PTSD criterion. It would not matter under which manual you are diagnosed, but PTSD and the specific reliance on a specific traumatic event occurring, still applies under both.