April 26, 2016 I had my first Lupron injection to stop my menstrual cycles and chemically castrate me. April 26, 2016 was the beginning of my life again. I cannot tell you just how my life has changed since then. It is night and day. Life is not all peaches and cream, of course not, it’s still life. I still struggle with mental health, I still get triggered, my hormones still fluctuate. However, for the first time since 2011 I have control over my life. Since then I have learned so much about menstrual related syndromes such as PMDD and menstrual psychosis. I have learned just how much hormones truly impact our bodies, minds, and emotions. I have learned that Reproductive Rights are so much more than abortion. I have learned that as a society those struggling with MRS (menstrual related syndromes) are belittled, ignored, and invalidated. And the shame that this so much worse for my AFAB colleagues. I don’t know how to be the activist that we need. I am not giving up. Even if every one brands me as someone to ignore, I will work till my last breath to keep bringing my message to everyone. I will force it down medical professionals throats, down insurance companies, down government agencies. I will, because I can. Because I have a voice and I refuse to be ignored or stand down. This is a warm and you can rest assured that I am the soldier you want fighting in the front lines. I will not go quietly into the night until I know that we are finally being listened to, our concerns validated, and our rights established.
I know, I know its Sunday. Where is my post about Friday? Well, Wednesday I did not replace my estradiol patch. Unfortunately the effects are not immediate. I started having issues on Friday and Saturday was horrid. Today I’m writing up Day 4 my TMS.
It was a pretty decent day to begin with, I had a cold and felt a little cruddy from the hormones, but it was all manageable at that point. I got to meet a friend for lunch, which we try to do once a week. Going into my appointment I was pretty positive. The Tech I had from Wednesday was there on Friday. She’s another really nice person, easy to work with and talk to. She was so happy there was sun because that meant she could mow her lawn this weekend and defeat her weeds. I commented about growing up in Arkansas and how I hate mowing lawns! Haha! Plus I have a black thumb anyways. I got set up easily, takes only a minute or two now, got my Supernatural going on the iPad, while she was getting the coil set up on the right side. No sensitivity! We started at 105% and moved up to 110% on the right side by the end of the session so I’m at full strength on the right side now which they were impressed with that I was able to get there so quickly.
We also discussed if I was noticing any improvement in my mood and anxiety. I could notice a difference in the first few hours but felt cautious in thinking it was real. Like maybe it was just that I felt hopeful. She reassured me that it could be real, even this early, but that we couldn’t really tell until we were at full strength for a couple weeks.
Before I knew it it was time to switch to the left side. A little sensitivity but not too much. No real pain. My head was hurting but I had a cold and my hormones we’re a mess. The left side we also got to 110% on Friday. I’m scheduled to get up to 120% on Monday.
I left Friday feeling better, more clear headed, my mind was not racing from worry to worry, anxiety to anxiety. I felt like I was breathing. After that I got a 90 minute massage, which cemented in that feeling for the rest of the evening.
I knew that Saturday I would wake up, my hormonal fluctuations would be at their worst, my mood would bounce all over the place and my anxiety would sky rocket and my mind would cloud over. I knew though that there was hope. That even if the TMS did not fully work, did not stay with me for long, that my life could change with enough work on my part and of those in my support system. I’m not talking about perfect, I’m not talking about “normal”, I’m talking about being functional, not living in fear every day, and maybe, just maybe a little happy on most days.
Those who are reading my story, thank you. You mean so much to me!
I didn’t write up my experience yesterday, not because it was bad, just because I ended up running all over the place in the afternoon and made a mad dash to Costco in the evening for some badly needed groceries. Rather than having to go into Downtown Seattle for my treatments I can no go to a more local office, so traffic is much better and its closer. No parking garage either! My car will be much safer! Yay! 😀
Anyways, back on track now. I did take my Adderall today, I promise. Just not responding very well.
For Day 2 and 3 my treatments both took about 35 minutes total. That is 15 minutes on both sides, plus the setup and finishing. Very simple, I walk in to the office, the tech usually is ready for me and takes me back to the treatment room. Again same chair, which by the way has a very adjustable headrest, which is nice. I’m on the taller side for my gender and I have a long neck so having the ability to adjust it is helpful for comfort and being able to sit still for longer.
They are starting treatments on the right side, which is still like a tapping metronome to me. It still makes me drowsy. My therapist suggested I put a metronome app on my phone for moments with heighted anxiety if that is really soothing to me. I get to now watch Netflix on an iPad with ear buds during treatment, which means I get to watch my favorite show Supernatural! This makes time go by very quickly and keeps me focused on things other than the tapping.
The area where the “tapping” is a bit sensitive to the touch now. I am currently at 105% of the threshold strength. Therapeutic levels are usually around 110-120%. On the left, they are going to keep building up slowly to 120% and on the right for me it will be 110%.
Both days I did experience mild pain behind my left eye due to the placement, meaning that the frequency is hitting a nerve. They did work to adjust it and most of the pain was greatly reduced. I did still have mild pain behind the eye, but it was very much bearable. This is due to just where my nerves are and where the placement of the coil needs to be to be most effective. The tech was very accommodating and understanding. After the treatment I have not had any residual pain and though I have a mild headache, I usually do most days anyways so for me it is not an issue.
I found out yesterday my estrogen levels are low, which is definitely impacting my mood given my history and what I know about myself, so hopefully between getting into see a new doctor who specializes in hormones and TMS over the next few months I will start seeing improvement. I hope I get some semblance of energy back soon, we will be moving in June and that process is already driving my anxiety and fatigue.
I’ll have more to share this weekend after the first four days of treatment. So far its pretty simple and essentially painless.
Day 1: I headed to my appointment for my first TMS treatment starting at about 8:10 for a 9:30 appointment. Though I’m only 13 miles away, I knew Seattle traffic. I should always plan an extra 30 minutes since I’m headed downtown. Not just for traffic, but I’m likely to get myself lost. Which I did. And I hit a stupid pylon in the parking garage so going into my treatment today I was worked up into panic mode.
So what is TMS? Well, it stands for transcranial magnetic stimulation. Why am I doing TMS? Well, I suffer from depression and anxiety due to a long morbid history, see my other blog posts, and so far I’m not getting the relief I need to have the life I know I can. I have tried everything so far that I can. So this is the next step. Trust me, I was extremely hesitant to take this step being a former ECT patient who has memory loss. The thought of messing with my brain anymore is scary. So are psychiatric medications or other drugs.
I wasn’t actually too anxious about trying this treatment, everything I read it was like being in an MRI kind of, just a lot more personal. Well I’ve had quite a few MRIs in my life so I knew I could handle that, I can even fall asleep in an MRI machine!
Anyways, I get in there, the office has the front desk and the waiting room separated by glass doors, which I found strange but then again, they have the coils going in multiple rooms so maybe its to protect waiting patients from that noise. I sat in the waiting room signing documents, fretting over the front bumper of my car, freaking out about what my husband is going to say, wondering if I double booked some appointments for the rest of the day or the next day, hmm was I missing an appointment on Friday? But I have TMS for the rest of the week. Yes that’s right, I have TMS treatments for an hour, five days a week, for six weeks. That is a lot. Let me ask you this though, if your anxiety and depression could go into remission for a longer period of time with six weeks of daily treatments versus being on high doses of medications for the rest of your life, would you take it? I would, well I am. I’m rambling…thank you ADD! I love you too.
One of the other patients kept glancing my way, I wasn’t quite sure what to make of it. She went back before I did, and my thoughts moved on elsewhere. Soon after 9:30 I was called back by the TMS tech that I was going to be with today, she was pretty and friendly. I’d seen her at the other office before, she’d changed her hair. We walked to the room and she had me put my stuff to the side, there was a chair, just like a dental chair, a computer on a mobile cart, and the TMS machinery in back behind the chair. I forgot to take off my glasses, no metal near the magnetic coils, so I get back up and put them in my purse. I brought a book with me just incase I needed something to busy my mind, though I didn’t have much hope for that as it’s so hard to focus on reading anyways. The tech was talking with me and telling me what she was going to be doing while the doctor walked in with the gal from the waiting room. Aha! She was a student and was there for training. Okay, curiosity resolved and I could focus my attention on the doctor. He explained that the tech was going to be placing this fashionable, white cap on my head to make measurements, at which point the tech started to do so. They were very clear that they were going to have to be up close and personal. He explained a little about the history of TMS, why they were making all the measurements they were. At one point the tech was doing one measurement in which she asked me to open and close my mouth, so while the doctor is standing there talking to me, with an intern watching, I look like a damn guppy. It was totally mortifying to me, but that’s just me. While she was still making the measurements I asked him about the difference between the bilateral and unilateral, since I was starting with bilateral I wanted to know a bit more. He seemed a bit surprised too that I was starting with bilateral and he confessed he didn’t read my actual consultations with my regular psychiatrist (she is his partner), so I explained a bit about my history (again see my other blog posts). He perfectly understood after my explanation why we went immediately to bilateral.
This is how it was explained to me essentially. TMS actually has been shown to affect the activity levels of neurons on the brain, in the hemispheres and areas where it is directed. When under going bilateral TMS, specifically High/Low, the left hemisphere is going to receive the High stimulation, which is about 10 taps (best word I can think of since it feels like something is tapping on your head) per second, to increase the activity levels on the left side of the prefrontal cortex. On the right side, they want to decrease activity levels for me, hence the Low. For the lowering of activity its about 1 tap per second.
Once they finally have all the measurements made now we have to find my threshold. So they use a specific coil with apparatus for measurement and marking that does only single taps to determine the strength/frequency that is needed. They do this by placing this special coil at a point in the brain that when at the right frequency will make your fingers in your right hand twitch involuntarily. It was interesting sitting there with the doctor moving this coil over my head, centimeter by centimeter asking the tech if my fingers twitched. They started the frequency at 50, the usual is between 50-70, and eventually we ended up around 59. The whole time I was wondering if I was going to respond at a normal level, because lets faced it my head is pretty messed up.
They mark the placement where my fingers twitched about 50% of the time and drew some more on my head on the left, then mirrored it on the right. They do not do both sides at the same time at the facility I went to, so I would be doing 15 minutes on the left and then 15 minutes on the right. Sometimes they start with the right, since its slower and such, but they decided to start on the left today. I’m special. 😀 At this point I put my ear plugs in, and drowned out the rest of the conversations that were no longer directed at me since the intern was asking the doctor questions and the tech was setting my chair up, putting the headrest in a comfortable position and leaning me back just a little.
Then they placed the heavy coil against the left side of my head, along the top, and a little forward. It wasn’t uncomfortable and they didn’t need to strap it as its on an adjustable stand. This also means I have to be careful not to move out of place or it won’t be in the correct position, well as some one with ADD, sitting still can be hard and I’ve been sitting still for a long time now. They are ready to start the treatment, I give them a big smile and say okay.
I get to feel actual TMS for the first time. It was slightly unnerving. Which they told me to expect. On the left side I would akin it to a woodpecker pecking at my head or a child drumming a pencil on my head rapidly. Kind of a flick/thunk, a flunk! I could feel some pain behind my eye, which they had told me was possible, once I said something they moved the coil around till that sensation was gone, its just a nerve being hit by the stimulus, nothing more. Once that was resolved, I then had pain in some of my teeth, so again, the tech moved the machine minutely and it resolved. It was a little irritating to be honest. I’m not going to lie about that, I wanted to brush it away but I sat as still as I could and usually just closed my eyes and breathed. Again it was not painful, only a little irritating. Just imagine that small child thunking you on the head for fifteen minutes. I will point out that for 1 second its 10 taps, then its a second break before the next tapping. It seemed to be taking a long time, but truly before I knew it I was done on the left side. She made sure I was doing well, didn’t need a break and we moved to the right side.
The right side was very different. I even felt tingly at one point. It was like a nice steady metronome. When I mentioned that to the tech she laughed and said that she had never heard of anyone call it that, but that it was a very good analogy. By the end of the 15 minutes I actually felt a bit drowsy, calm. Whoa. Of course I told myself its just a placebo effect. It was over. She placed my fashionable, artistic cap in a bag with ear plugs for me the next day, wished me well and she would see me soon. As I was walking out, a little lighter, I asked the front desk if I needed to do anything to check out, nope! I was all good. And off I went. That was the end of my first day of TMS treatment.
I got out to my car, surveyed the damaged I had done to it parking once again and took a deep breath. I was okay. No panic. Now I don’t think TMS works that fast, but it certainly didn’t hurt.
I will see how tomorrow’s treatment goes! Day 2 TMS here I come!
Let me explain, in my own experience, the difference between PMDD and menstrual psychosis (Brockington, 2005) having lived both. Now I will note that menstrual psychosis does not usually occur every cycle, it may happen for a few consecutive cycles in a row and stop permanently, it may start and stop over a period of years, it may last for a year or just a single month. Its also important to note that there is so much stigma attached to mood disorders and hormones and mental health, there is even more stigma attached to psychosis, in many cases those that may be experiencing psychosis will never get help because of that stigma. I was nearly one of them.
PMDD is brutal enough, but can you imagine welcoming months where its just PMDD? When PMDD seemed so much easier to deal with? No, not many can. Not the individuals who struggle with PMDD on a cyclical basis and not those who have never experienced it. There are those like me though, not many, we are a tiny sliver of the population and I wish that population didn’t exist at all. Menstrual psychosis is both alike and unlike postpartum psychosis. Both are acute phases of psychosis that end, with menstrual psychosis, the end may be at the onset of menstruation, or shortly after. Both are seen as conditions not to admit to, to not get help, and as monstrous. Unlike postpartum psychosis, menstrual psychosis can strike an individual at any point of their reproductive age/cycle, several of the cases are that of teenagers who never experienced pregnancy (Brockington, 2005). Some symptoms of psychosis are mania, delusions, suicidal and/or homicidal thoughts/actions, hallucinations, depression, insomnia, paranoia, dissociation and there are more but those are the main ones. Those are ones that I personally experienced, though I never acted on any homicidal thoughts, there were enough to make me want to lock myself up and throw away the key or to die by suicide just to prevent me from hurting anyone if I truly got lost in the maelstrom.
If you are experiencing any of these symptoms mentioned above now or have in the past, please seek out help! You have rights and you can have a say in what kinds of treatment you receive regardless of the cause, but you owe it to yourself to get help.
There is hope. You are not alone.
I had PMDD from the start of menstruation. For me it started as horrible cramps, bloating, flu like symptoms, migraines, depression, anxiety, and self harm. It affected my education, my friendships, my family and myself greatly. I developed numerous destructive habits and behaviors. Every month was a battle that I did not know the cause and was just downplayed that every other woman who menstruated struggled with. I had no idea. My mom had no idea. My doctors had no idea. I also had PCOS, which in truth I was thankful for because even though I hated what it did to my body, I was stable in the months in which I did not get my cycle. And when it stretched on for months and months of me not getting my cycle and being infertile, I felt relief. I hated birth control, it always made me feel ill and off but I would take it for a few years, then stop, then start. I ended up missing a lot of work, every month the migraines and the mood swings would take over. The debilitating cramps and always getting sick. It took a toll on my relationship and my career, I couldn’t be trusted. I can’t blame them, I didn’t trust me either. I struggled through my 20s, went through college, held multiple jobs, found stability finally but still it was only at the grace of those around me and who supported me.
Menstrual Psychosis – Hell has a name and it is hormone fluctuations.
I did not have menstrual psychosis until after the traumatic birth of my second child. At that point I was told it was postpartum psychosis. Later, you can find menstrual psychosis written down in my medical files, they just never told me. It didn’t go away though after 8 months postpartum. It kept coming back, no in the same extreme way each month, but every few months or so, it crept in and I was lost again. I don’t know why some months were so much worse than others. I do know that I was misdiagnosed for a long time, bipolar does not include those symptoms of psychosis. I do know that my psychiatrist was way over their head. I do know that all the doctors and hospitals I saw should have connected the dots to my cycle or listed to me when I told them that it was connected. I know I was failed by our medical community at large. Can I fault them? No one wants to admit to psychosis and treating psychosis is still barbaric to this day. Not that ripping out my ovaries and uterus is not barbaric but it just isn’t the same when it comes to the brain.
Psychosis does not mean you are a psychopath.
The worst parts of the psychosis was the mania and delusion and then the hallucinations that followed. I experienced the mania/hypomania more often than I experienced the hallucinations, always before I ovulated. Estrogen is a feel good hormone after all. I experienced the hallucinations after ovulation, when progesterone spiked. The spike sent me to the lowest places I could never imagine. I experienced mostly auditory hallucinations, but the developed as images sometimes, mostly in my head but sometimes I felt them hanging over me. I hallucinated angels tell me to end the suffering that my children were going to have to live through. They told me to kill myself so many times. I fought and I fought, but only a small part of my brain at those times knew this wasn’t right, this wasn’t real. Thankfully it won most of the time. I’m not afraid to admit I tried to die by suicide. No, I do not think its selfish. I don’t care what anyone else says. I know what I faced, I know what I felt, and I know that it was for protection. I’m still here, I’m still fighting, I’m trying to get the word out.
I struggled with paranoia and impulse control. I still can struggle now, but its not to the same extent. I didn’t believe that people were out to get me, rather that everyone judged me and found me wanting. I was also delusional in certain instances, believing I could be or do something that I just couldn’t or shouldn’t even attempt. I also struggled with dissociation, such as derealization and depersonalization. Where I felt nothing was real or that I was not part of my body, like an outsider. I even experienced out of body experiences in some of the worst moments.
All of these symptoms were on top of the regular PMDD symptoms, the rage and irritability, the rapid mood swings, the flu like symptoms, the cramps and migraines. I could barely breathe but when I had months were it was just the PMDD stuff, I felt relief. I could deal with that. The psychosis always came back though.
My memories are faulty, as is often the case when people suffer psychosis and I struggle with PTSD from it all now. I struggle because I can’t remember my daughters when they were little, or concerts I went to with my husband. I can’t remember so much or really who I was before all this mess. I get glimpses, but its like looking through a stained glass window, its distorted, both beautifully and disturbing in the lack of clarity, wholeness.
Nearly two year ago, I found out about PMDD and went down a new path of treatment. I ended up having surgery to remove my ovaries, uterus, and cervix and now am in surgical menopause. I manage my hormones with estradiol hormone replacement and as long as I keep it stable I do as well as someone who has gone through psychosis can be expected to. While my life may not be fun or what others expect life should be, I know where I have been and I am thankful every day that I do not have to face that. I survived years of menstrual psychosis, without being locked up and the key thrown away. There is hope.
If you or someone you know is struggling with PMDD or another hormonal mood disorder please consider checking out the resources over at the Gia Allemand Foundation(www.giaallemandfoundation.org), a nonprofit organization that is dedicated to help those who suffer from these debilitating illnesses.
April is PMDD awareness month. Please pass this on!
- Brockington, I. (2005) Menstrual Psychosis. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1414712/
Then he talked about rapid cycling, which I probably had since I did cycle through hypomania and depression more than 4 times a year. I wanted to argue. And yes he did agree that hormones could have some impact on my moods but they were not the cause.
So on we trudged down the list of pills, trying old ones in new combinations, trying just released to the market, trying off label pills. Pills, pills, and more pills. I had been trying therapists but never made a connection with them, I didn’t feel it was in my head. It felt more like that something else was taking over my mind and body.
These were some of my daily pills, some of which I took more than once a day. These were my psych meds and two supplements. I had other medications for other issues not pictured here. It was daunting.
A few months down the line, we were watching something in a movie theater and I ended up in excruciating pain. Went to the hospital, had tests and ultrasounds done and sure enough I had PCOS. This explained the absent menstrual cycles that I wasn’t complaining about. Saw a doctor, they said birth control. I chose Depo-Provera (progesterone only injection) because I hated having periods. It didn’t help my weight issue. Beyond that my PCOS went untreated and I didn’t stay on birth control, I didn’t do well on it both physically and mentally. I didn’t really think anything of it at the time. Many women don’t react well to birth control.