No-pamax

I am, once again, off medication.

I probably shouldn’t have started back in the first place. I’ve struggled with finding medications that were more beneficial than harmful. I’ve talked about my issues with psychotropic medications before in this post. I cannot take antidepressants because they cause an adverse reaction. I actually seem to function quite decently on no medication at all (and that’s not just me saying that – others agree).

My migraines were getting so bothersome that I agreed to give Topamax a try when my doctor suggested it back in March. I had been on Topamax before – last year to be exact – and had considerable side effects and ended up weaning off. But I was so desperate for relief, and my doctor was confident that Topamax would work for my migraines and would help me stop smoking – killing two birds with one stone.

It worked. My migraines significantly diminished, and after a week or two, I had no migraines at all. Headaches, yes, but they were tolerable in comparison to the migraines I had been experiencing for so long. I found relief.

Unfortunately, I also found a shitload of side effects. Gastrointestinal issues (I will spare you the details) just worsened as the dosage increased. While my cravings for cigarettes decreased (I actually managed to go 10 days without smoking), my cravings for everything else – including food – also decreased. The mere act of drinking water required a massive amount of effort, because anything that would go near my mouth would make me instantly sick.

Even so, I continued to take the Topamax. But then the scary side effects started to creep up. I would be having an okay day and suicidal thoughts would come out of nowhere. I didn’t put two and two together until the thoughts continued to get worse as my dosage continued to increase.

I’ve had similar reactions before, but that was when I was taking antidepressants. I knew Topamax was not an anti-depressant. Out of curiosity, I googled Topamax and suicide and came across countless others who had experienced the same side effects. I read at least a dozen accounts that were eerily similar to mine: being okay one minute, then having troubling – at times graphic – thoughts of suicide just moments later.

I knew then that maybe this medication was just not worth it for me. I really wanted it to work out, because my migraines were gone. But I also knew that I needed to be alive and functional, and the medication was sending me on a path in the opposite direction. I told my therapist what was going on. I told my close friends to watch out for the signs. And after two more weeks with no improvement, I started to wean off of the medication.

So now I am sans medication. My migraines are back, but I am treating them with OTC migraine medication for now. My mind is not as foggy. I feel more mentally balanced. My mood is more stabilized now that I am off of the medication (which is ironic, because Topamax is used off-label as a mood stabilizer). I feel more connected to reality and to living.

I am not advocating anyone going off of their medication. I have done it in the past under close guidance. I just happen to be one of the small percentage of people who experience adverse reactions/side effects from psychotropic medications.

I wish there was a pill I could take to make me better. Unfortunately, with trauma-based disorders like PTSD and DID, treatment relies more on therapy than on medication. That’s why I go to therapy a few times a week, every week. Healing happens from there, not from a pill.

Doctor’s Appointment

I had my doctor’s appointment on Monday.

It was full of a lot of disappointment.

I am proud of myself for sticking through it and not backing out, despite terrible anxiety.

I sat in the waiting room filling out endless paperwork. I’m pretty sure my legs were shaking the entire time. I considered walking out twice, but I couldn’t.

I finally got in the room and the doctor came in. She seemed a nice. A little upbeat. I’m weary of upbeat people. Perhaps she drank too much coffee. She looked over my paperwork, then focused on my lengthy list of hospitalizations. Panic attacks, psychiatric, psychiatric, malnutrition, psychiatric, psychiatric, and then at least six hospitalizations for pneumonia that I could remember in the last decade. Then she noticed the name of the hospital and asked me where it was.

“Oh, I delivered babies at that hospital. I used to live there!”

My heart sank a little. Of the hundreds of cities and towns in this state, this doctor happened to live in my hometown, just a few minutes away from where I used to live. It’s not even a major city, which makes it even more weird. A part of me instantly put a guard up. Anyone from back home is a possible threat in my mind, even though the actual likelihood that they are is slim to none. Tell my brain that.

She did a mental health/depression screening. I failed. I should have known better. Because then, of course, she wanted to put me on psych meds. No thanks. She named several antidepressants that her patients had shown success on. That’s great. Except a) I don’t have clinical depression and b) I can’t take anti-depressants. I am part of the small percentage of people who have reverse reactions to SSRIs and SNRIs and end up more depressed and suicidal. There are no medications for DID. I didn’t come here for psych meds. I started to get frustrated and lost hope in the rest of the appointment.

Then she suggested a medication for my migraines, and said it would also help me stop smoking. I recognized the name as a medication I had taken before and had to stop taking because I couldn’t handle the nausea and complete loss of appetite. But she was a little insistent, even after I subtly mentioned a few times that eating enough is already a problem for me. But I’m fat, so most doctors don’t see past that and assume I could benefit from a loss in appetite. They don’t realize that, just two years ago, I weighed 160 pounds more than I do now. I just gave in and let her write the prescription, telling myself I could decide later on if I wanted to take it. Then I realized that her dosage is 4X the dose I was taking when I stopped taking it some time ago. So I’m certain taking this medication will not go over well.

She was especially concerned with my respiratory problems. I have a history of asthma, chronic pneumonia, and respiratory failure. I smoke. I have a family history of heart disease. She wanted an EKG, but by the end of the appointment I just couldn’t do it. She listened to my lungs. I hate taking deep breaths, because I can hear and feel the air struggling to get out of my lungs when I exhale. It is not a good sound. It is not a good feeling. This was no different.

She tried to explain, using her hands, what was happening to my lungs. She mentioned COPD – and this wasn’t the first time I had heard that. My long history of respiratory problems and consistent pattern of breathing difficulties had been pushing me towards a COPD diagnosis, but no doctors had ever made it official and never made it a priority. She prescribed me a few different inhalers, which she said would treat both asthma and COPD. And in my mind, it hadn’t yet clicked that she was insinuating that I had COPD. I thought she was just saying it was a risk to try to get me to stop smoking.

But then, the next day, I checked my medical record online to make sure all of my information went through, and right there, towards the top of my chart, was chronic obstructive pulmonary disease, unspecified – Active – Diagnosis Date 03212016. For some reason, in that moment, it hit me. This diagnosis was on my medical record. What the fuck.

I was angry. I was enraged. Not at myself. But AT THE DOCTOR. How could she do this to me? I am 30 years old. COPD is for old people. I am not old. I do not have COPD. And being the irrational person that I am sometimes, I responded by going to the store and buying MORE cigarettes – because in my mind, if I already have the diagnosis, why the fuck should I care now? It’s just been a whirlwind of emotions about this that I still haven’t processed yet.

Going back to the appointment, she took a lot of blood. Probably more than I’ve ever had taken before. She is testing my vitamin levels, thyroid, blood titers, all the usual shit and then some. And that was it. There was so much focus on my mental health and my breathing, issues that I thought I had under control, and nothing about my constant pain. I was disappointed. I have to go back and see her next month, but I just don’t know if it’s worth the travel to get there. It did not go as we (me and my therapist) had hoped. I will talk to my therapist more about it in our session tomorrow, but I just don’t know. I need to take some time and think it over. As I smoke more cigarettes. With my new inhalers.

I’m sad that so many doctors don’t consider the past, only the present. Of course I have trouble sleeping and hate life sometimes. If you knew what I experienced the last 30 years, my present makes sense. Yes, I’m overweight now. But I lost a tremendous amount of weight in a relatively short amount of time and got sick from it. So while yes, I need to lose weight, I don’t need to promote my eating disorder to do so.

I know that some of my health issues are my own fault. Smoking does not help my cause. But I also had severe respiratory problems well before I started smoking. I started because at that point, I didn’t care. Part of me still doesn’t. But still. I’m only fucking 30. Where the fuck did I go wrong in life?

Meanwhile, the shittiest fucking people alive are still living. My mother will probably outlive me. My father has had several heart attacks, a stroke, and congestive heart failure for years and he is STILL hanging on. What the fuck.

Life is a cruel joke sometimes.

Involuntarily voluntarily admitted

I’m back.

A few hours ago, I was released from the psychiatric unit of my local hospital.  I had been there since Friday.  I didn’t want to go to the hospital.  In the end, I knew it was the right thing to do.

Friday night, everything just came to a head.  My flashbacks were occurring quite frequently to the point that I was becoming almost paranoid.  Looking back, my thoughts were so irrational.  I genuinely believed that my mother was going to come and hurt me.  I heard her voice in my head and I couldn’t get it out.  I didn’t feel safe.  I jumped at every little noise.  I couldn’t breathe because I had gotten myself in such a panic.  I was switching between wanting to die and wanting to find safety.  I ended up cutting myself more than I even consciously realized.  I taped menstrual pads to myself, grabbed my hoodie and my sneakers and ran out of the house.  I left the house originally planning to take a walk, hoping I would be able to find some relief.  Instead, I found myself panicking even more, constantly looking over my shoulder, running through the streets in the dark of night.  After awhile I decided to walk to the hospital.  I waited in front of the emergency room for a while still hoping the feelings would go away.  But they were still there.  I knew I had no control at that time.  So I went in.

When I first got in the ER, I was panicking. I kept telling the nurse to “please don’t let them (my family) find me, please don’t tell them I’m here.”  When I met with the social worker in crisis, she asked me if I was hiding from anyone because of what I kept saying. I told her the basics, that I left my family because they were not nice people. No one wants to hear that shit anyway.

After a few hours in the hospital, the panic began to subside.  I started to feel safe again.  I wanted to leave, but of course you can’t just do that.  If you don’t admit yourself voluntarily, they will involuntarily commit you.  Then, if you try to sign out of voluntary before you are released, they will involuntarily commit you.  So not much of a choice, is it?  The staff kept trying to tell me I was depressed.  I specifically told them I was not depressed.  It was an issue of anxiety and PTSD.  I know the difference very well.  It always seems to be a fight, though.  I was more upset at the fact that I was now going to be missing my first day of work, and I’d probably be out of a job.  All these steps forward I took and now I’d have to start over.

In the hospital, I contemplated going back home.  Maybe I just wasn’t cut out for this freedom.  I don’t know.  I moved away, yet I still ended up hospitalized.  So maybe it wasn’t the right choice.  Maybe I missed something.  Maybe my mother was right.  Maybe I can’t live without her.  I just want to be normal.  But maybe I have to acknowledge the fact that I will never be normal.

It doesn’t help hat my support system is lacking.  I have no family, and while I know that is for the better, hospital staff see that as concerning.  I tried to reach out to someone on Friday night, only to be shut down.  I couldn’t contact my therapist because she was out of the country.  While my online friends are available, I often think there is a lack of understanding, especially when some of the comments they make tend to piss me off or upset me even more than I was upset to begin with.  I’m not even surprised I ended up in the hospital.  I have no one here.  I’m not even sure the people I have a distance away are supportive for me anymore.  At this point, I only have complete trust in my therapists.  Everyone else is just sort of out there outside of my protective bubble.

Going back to my hospital experience, I can’t tell you how much I dislike going into psychiatric hospitals because you have to answer the same horrible questions so many times, tell all your problems to at least one person on each floor.  It’s frustrating for me because I always struggle with whether or not I should be open about my history.  If I say I have flashbacks, they want to know of what and why.  When they ask about any abuse history, they want to know who, how, and how long.  I never know what reaction I’ll get when I say it was my mother.  I admit, the last couple of times I was hospitalized prior to this, the staff were accepting and appropriately responsive to me.  During this hospitalization, when I revealed that my mother was my abuser, the nurse made a face and asked me “Are you a lesbian?  Is your mother a lesbian?”  What? Hold up.  I just told you that my mother and father both abused me, which means my father was in the picture, which means my mother was not a lesbian.  But even then, what the hell kind of a question is that?  Saying something like that makes me feel like you are insinuating all parties involved are homosexual.  Mother-daughter sexual abuse has nothing…I repeat NOTHING…to do with homosexuality.  This assumption gets me so infuriated.  If I was a male who admitted being abused by a male, would she have asked me if I was gay?  I highly doubt it.  Sexual abuse is rarely about sexuality.  I am not a fucking lesbian.  Fuck.  If it weren’t for the fact that I hadn’t slept in about 30 hours at that point, I probably would have blown up at her.  But I was so physically and mentally exhausted that I just let it go.  It makes me rage just thinking about it, though.  Then again, I can’t blame people for their complete lack of knowledge about MDSA.  I just need to use this experience as more fuel for me to spread awareness.

I have to say, the one (and probably only) positive that came out of this hospitalization experience was seeing the psychiatrist.  This psychiatrist had a brain.  He had a concern.  He actually talked to me for a good 30 minutes, which is something I have never experienced from a psychiatrist before.  He listened to me.  He listened to my concerns.  We went over my whole lengthy medication history.  For the first time, someone is focusing on treating my PTSD.  Not depression.  Everyone always wants to shove anti-depressants down my throat.  In fact, within 10 minutes of arriving on the psych floor, they wanted me to take a dose of Celexa.  I refused.  First of all, been there, done that drug.  Second of all, these people don’t even know me or my history yet, how are they medicating the unknown?  I am glad I stood my ground, and the psychiatrist agreed with me.  I think he liked me.  He told me that I should pursue a career in psychiatry.  When I told him I wanted to be a counselor, he said “you can do both, you can do whatever.  You’re probably smarter than I am.”  This dude just met me.  What?  How does he assess me so fast?  At the end of our session, he said “I would be honored if you would be my patient.  I genuinely enjoy talking to you.  Can I shake your hand?”  It was late at night.  Maybe he needed sleep.  I don’t know.  Everyone else was saying how much of an asshole he was, but he was anything but to me.

Anyway, he prescribed me Prazosin.  It’s actually a blood pressure medication but has been used off-label to treat combat veterans returning from war with PTSD with considerable success.  He said it should help my nightmares and night terrors.  He also prescribed Topamax, which has been used in treatment-resistant PTSD (since I haven’t responded well to anti-psychotics) and hydroxyzine for panic attacks.  So far, so good.  I had no problems in the hospital.  No side effects, except for the hydroxyzine making me extremely tired.  But I’d rather be tired than in a panic.

Overall, the other patients were cool people.  I talked to everyone.  There was one girl who was a little inappropriately attached to me and the other patients were saying she was in love with me.  She may very well have been.  She was constantly sitting next to me and at one point pulled me over to the side to ask me to help her fix her bra.  She also touched me several times despite me telling her please do not touch me.  It irritated the hell out of me.  I try to be nice to everyone but between the MDSA and the nurse’s question about being lesbian, I was just not in the mood to be involved in that shit.  I knew I had to be patient and bite my tongue if I wanted to get out of there.  Acting out would have just gotten me involuntarily committed or punished with a longer stay.

Since I was doing well on the medication and had a therapy appointment already scheduled today, they released me.  I’m glad, because being in that place was not an overall positive experience.  It was very unstructured.  There were very few groups and activities, no outside time, and very little staff.  There were no individual counseling sessions and no meetings with a social worker, which I have always had in my other hospitalizations.  It just seemed very disconnected.  You never really knew what was going on.  If it wasn’t for my roommate getting in contact with my therapist for me, I don’t think the hospital would have even ever contacted her to tell her I was there.  I learned a lot of the patients were “regulars”.  With the lack of care there, I am not surprised.  Many of the patients were just homeless and needed a place to stay.  It’s sad.  The system isn’t working.  It needs to be fixed.

My love/hate (mostly hate) relationship with medication

I’ve been meaning to write this post for a while, but never quite got around to it.

Anyone who has experienced some type of psychological distress or mental illness has likely also experienced some type of medication to treat it.  Even with psychotherapy, most doctors and psychiatrists push medications to help ease the symptoms and improve functioning.  Sometimes it works, sometimes it doesn’t.  It’s always a gamble, more so than with physical conditions, because the brain isn’t always so straightforward.  Fourteen years of experience, lots of research, and an education in psychology has allowed me to increase my knowledge about psychotropic medications.  I almost wish I had the knowledge before taking some of these medications, but what’s done is done.

I started out, at the ripe young age of 15, on a twice daily prescription of Depakote.  Since I couldn’t swallow pills at that age, I had to take the liquid form – which came in a container that resembled a large bottle of peroxide.  The taste was not pleasant.  The side effects were annoying; I would get sunburn just from sitting in the car.  I also developed cystic ovaries that were most likely a direct side effect from the medication.  More importantly, Depakote didn’t do shit for me psychologically.  But why would it?  I didn’t have Bipolar Disorder.  It was a waste of money, a waste of time, and a waste of my ovaries.

I went quite a few years sans medication.  That wasn’t by my choice, really.  I wasn’t allowed to go to the doctor.  I just dealt with everything on my own, as usual.  I managed to stay alive, so I guess I can’t complain.  Maybe I should have kept with that method, because starting back on a path of medications turned out to be a horrible experience.

In October 2014, I managed to sneak to the doctor’s office to ask about medication.  I had been communicating with a therapist online who suggested that it was worth looking into.  I was at a point where I was becoming increasingly unable to deal with shit on my own.  I was prescribed 50mg of Zoloft and 0.25 of Xanax.  After a week, I was having trouble sleeping, so they added on Ambien.  After two more weeks, I still wasn’t feeling any better, so they increased my Zoloft to 50 mg twice a day and Xanax three times a day.  Within a week or two, I was severely suicidal.  I felt worse than I did the month before when I came to the doctor’s with nothing.  I just wanted them to try a different medication.  I knew there were numerous options.  Instead, I ended up hospitalized.

During the first hospitalization, I was taken off Zoloft and put on Paxil.  No change.  After a few days, I was taken off Paxil and put on Prozac.  Prozac made me want to jump out of my own skin.  I was constantly on edge, irritated, and anxious.  I couldn’t stop shaking during one of the group sessions, so the therapist called the psychiatrist in to reassess.  The Prozac was immediately discontinued and I was started on 10mg of trifluoperazine.  Yea, I never heard of it, either.  Once I got out of the hospital, I was able to research it and found out is an old-school anti-psychotic prescribed for schizophrenia.  It was definitely not a common drug – I had to go to several pharmacies before I found one that even had the medication in stock.  While it didn’t make me worse like all of the antidepressants I had taken before, it didn’t really make me better.  There were some days where it left me feeling weird overall – like it hurt to be in my own body, physically and mentally.  I had to keep moving because I felt that if I had stopped, my body would become rigid and it made my pain worse.  After a week of taking it outside of the hospital, I stopped.  The weird sensations were just too much for me.

During my second hospitalization, my medications were changed again.  I was put on Celexa and Ativan.  The Ativan worked better than Xanax ever did, but the Celexa was the same as any other anti-depressant I had been on.  I was switched to Remeron, which I had never heard of before.  It’s a less popular anti-depressant, not an SSRI but a tetracyclic.  I started back on the trifluoperazine.  By this time, I was just tired of being in the hospital. I was also dealing with malnourishment and was put on a load of supplements, and was sort of in a “fuck it all” mindset.  I had been sleeping a lot, but I had attributed it to the malnourishment.  Weeks later, my sleeping had only gotten worse.  I would wake up to take a shower and would crawl right back into bed afterwards because I was so exhausted.  When I was working, I would come home and go right back to sleep.  On the weekends when I had off from work, I would sleep 14-15 hours straight; even when I was awake, I was still too tired to do much of anything.  I was miserable.  To make matters worse, I started losing my vision; it was a side effect from the trifluoperazine.  Once I started having involuntary facial twitches, which I recognized as the beginning of tardive dyskinesia, I knew I had to stop taking the trifluoperazine for good.

Some time between my December hospitalization and my last hospitalization in February, my primary care doctor prescribed me Adderall for ADHD.  I always had problems with keeping focus and attention, but I managed all those years just fine.  It did get to a point where it was becoming overwhelming.  I was barely able to get my school work done and I was having problems at work.  I started out with 10mg and it worked.  I was able to get shit done.  My mind was clear.  I could focus for once.  My doctor gradually increased the dose to 30mg twice a day.  I felt so much better overall, not just attention-wise, but anxiety-wise as well.

Going back to that horrible drug Remeron, I couldn’t get a refill because county-run facilities are shit and the psychiatrist cancelled my appointments more than four times.  I couldn’t even wean myself off and I became increasingly suicidal again.  It’s no surprise I ended up in the hospital in February.  In the hospital, they took me off of all my medications, including the Adderall, which was probably the only redeeming medication I was taking.  The nurse practitioner did not think the Adderall was helping me; I found it somewhat amusing that this was the same facility that placed me on so many medications previously that did shit as far as making me better.

This time, I was prescribed 150mg of Zoloft and Seroquel.  Within an hour of taking the Zoloft, I lost consciousness.  I woke up on a hospital bed with no idea of what had happened.  I was monitored for the next 12 hours and got to stay in bed.  It was marked in my record that I was reactive to Zoloft and should not be prescribed it ever again.  They waited a day and then started me on Lexapro.  A few days later they changed the Seroquel to Risperdal because I guess I hadn’t had much benefit from it.  I was also put on Klonopin for anxiety.  I had a paper due soon, so I told the hospital staff the medication was working so I could get the hell home.  I wasn’t any worse, maybe slightly better, but still not stable.

I didn’t like the way Klonopin made me feel, so I switched back to taking Ativan as needed.  After a month or so, the psychiatrist doubled my Lexapro dose because I was (like clockwork) getting worse, added trazadone and increased my Ativan.  I was taking so many medications that I carried around a purse just so I would remember to take them all.

I tried to keep up with taking my medications…I really did.  I know that people go off of their medications all the time and end up in a worse position.  In my heart, I believed it was too much.  I got tired of taking multiple medications every hour of my life and not really seeing a result.  I made the decision in May to wean myself off of all of my medications, including my beloved Adderall (which was re-prescribed by my PCP).  I didn’t tell anyone because I knew I would get backlash from it.  I would not have done it if I wasn’t educated and knew what I was dealing with.  I also had enough sense to know if something was going wrong.  I never suffered any withdrawals.  While I didn’t get any better, more importantly, I didn’t get any worse. 

It’s been more than two months now and I’m still functioning.  I do occasionally take an Ativan when I feel my anxiety getting bad (who would blame me, especially these last several weeks).  I did notice that my focus and attention went to shit, but I was coping.  Then it got bad.  I was so behind in my thesis work and got to a point of desperation.  Luckily, I saved all of the medication I stopped taking.  I took an Adderall on Tuesday night and finished 13 pages of research by Wednesday morning. My mind was clear, my anxiety was gone.  I even decided to do something I never do and went to the beach by myself.  It was a good feeling.  I missed the Adderall.  I probably shouldn’t have taken a full dose, though, as I ended up staying awake for over 40 hours straight.  It was nice feeling somewhat normal for those 40 hours.

I’m not even sure if I’ve mentioned all of the medications I’ve been on.  All I can tell you is it’s been too many.  I probably function better now that I’m not on a bunch of medications.  My therapist was actually supportive of my decision when I told her what I had done.  Now, I am working on finding a new doctor that my therapist can work with to make sure I’m not sent down that slippery slope of over-medication again.