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PMDD or Menstrual Psychosis?

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!

 

  1. Brockington, I. (2005) Menstrual Psychosis.  https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1414712/
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The journey begins

My story. I think that more women than care to admit have been where I was and need to hear this. This is long but you need to hear the whole thing before coming to any conclusions.

Let me first set some things straight. I am not anti medication. I am not anti supplement. I am not anti ECT. I am not anti doctor of any kind. I am against throwing pills at anyone with the expectation that something will eventually work. I am against labeling someone treatment resistant. I am against when someone refuses to listen, really listen to all the small details. I am against bias and sexism and knowing that there are treatments out there that can work but doctors not willing to consent to their patients wishes.

Short history to me. My period did not start until I was 14. At which point puberty hit me very hard. Weight gain, headaches, acne, etc… In fact it was around that time I started to suffer from migraines very often and constant headaches. My parents ended up seeking treatment for me a special clinic hours away to help me cope. In 2000, at 16 I dropped out of high school because it wasn’t the place for me and studied for my GED. That fall I went to community college enrolled in an associates degree program. During this time I met a person I fell in love with on the internet. December 2002 I graduated with my associates degree and moved to Texas to be with the man I fell in love with. About a week before my 19th birthday I got married. I was not a girl to be held back from what I wanted in my life.
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.

Fast forward to 2007. We now lived in California, near my parents. I was in the process of having weight loss surgery to try to regain my life and start over. I was young and immature still but that is life. After weight loss surgery your menstrual cycle returns with a vengeance if it was stopped and you become regular again within a very short time. Something I hadn’t experienced in a long time and was infertile (due to PCOS) prior to the surgery. Shortly after my weight loss surgery I got pregnant. My doctors suggested abortion because I was putting my life at risk for what could possibly be a deformed child due to my surgery. I was able to maintain both the pregnancy and the weight loss through a lot of hard work and a lot of support. I have a beautiful daughter who is happy and healthy, who was coincidentally born one year to the date of my weight loss surgery. I suffered from a bout of post partum depression after her birth, was eventually treated for it with anti depressants, and rebounded to live a more productive and healthy life with my family.

Fast forward to early 2011. I was about to give birth to my second baby. Another little girl. In the last couple years I had made great headway in my life. I had my taken good care of myself self and lost 135 pounds after the surgery. I was raising a beautiful daughter with a head full of strawberry blond hair. I had finished both a bachelors degree and a masters degree in accounting. I had recently transitioned from a contract data clerk to a full time industrial engineer for an aerospace company. I thought I was beautiful, loved my clothes, even though I was still a size 14/16, I was confident and proud of myself. I felt vindicated in my choices and I had a happy beautiful family to show off for it. My husband still supported me in everything I did!

My world came crashing down during the birth of my second baby. I have flashbacks to those few moments. Trauma doesn’t have to meet a certain definition to be traumatic to someone. All it has to do is trigger the fight or flight sensation, and especially if you can’t respond with either one of those actions the trauma will take a huge toll  on you. I have precipitous labor. Meaning without warning and very sudden. I was in a hospital, they had induced labor because the day before she had been breech and I was schedule for a C-section. She had turned and they wanted to push the labor forward so she didn’t turn again. After about 8 hours into it, on epidural, my water broke. And my body took over. My control was ripped from my brain and my body wanted to expel the baby as fast as possible. I felt like I was being ripped in half. I felt pure and simple terror. Someone was going to die, I was sure of it. If it wasn’t me than the baby was. It only took two minutes from when my water broke. It seems like my screams lasted longer. I know I wasn’t fully dilated because they had just checked me 30 minutes before and I was only 5 centimeters. As soon as she was out I blacked out for a split second, and then became aware that my baby was lying on the birthing bed, not crying. Terror hit all over again. I couldn’t get the strength to reach for her. I think I was sobbing, so scared. While I was struggling to regain strength an orderly walked in to deliver blankets and saw the scene. I don’t know if he said anything but I did see panic in his eyes as he gaped for a second and then darted out the door calling for help. A few moments later a nurse dashed into the room, panicked as well. She got the baby. The baby was breathing. Everything was a daze after that. A lot of tests happened and then they laid her on my chest, while I struggled to wrap my arms around her. I think we stayed in the hospital a day longer than usual. She wasn’t preemie but was very small, we had to put her in preemie clothes and diapers and they still hung a bit on her. If she hadn’t been that small I would have suffered severe internal damage.

She is a fussy baby. Always has to be held, mostly by daddy, and is very colicky. I am stressed, exhausted, feeling like a failure because my milk again won’t come in. I cry a lot and I hide a lot. I keep trying to put on a happy face, for my family, but something is going on in my head. I had post partum depression with my first. So its not unexpected it would happen again. It feels different. More ominous. A month or so goes by at home and I get worse. I put all my energy is getting physically fit again, trying to outrun the demons in my head. Within two months I am back to my pre-pregnancy weight, but I haven’t outrun the demons. They are getting stronger. Its not someone else’s voice I hear. It is my own. My inner self telling me I have doomed these innocent children to the torture that is called life. That they are going to suffer in pain for the rest of their lives and then they will die and their souls will be tossed into oblivion. That by me choosing to have children I have intentionally caused their pain and suffering. I placed a death sentence on them. Then the visual hallucinations started. Visions of me suffocating my infant. I had just enough logic to understand that this was not real and that there was something very wrong now. I collapsed in the middle of the night, in the middle of my living begging my husband to call my mom. She came and held me, for a long time. They promised that this wasn’t real. That my brain was hurting me and that it was telling me horrible lies. They promised the my children were not doomed, that they were not going to suffer, that they would live lives with happiness and sadness in them but that they were not doomed. My family is Christian, they assured me that my children were not doomed to die and that their souls were not going to oblivion. I couldn’t believe any of this at this point. My mind had been poisoned by a long, slow trickle. I told them I wanted help, I didn’t want to live like this. My mom took the girls that night, not to keep them safe, but to keep me safe, to keep me from torturing myself, and to let me try to rest. I don’t remember if in the following days I went to the hospital or not. My memory is vague after that night. I know I saw a psychiatrist in the next couple days who diagnosed me with the little known post partum psychosis. I was now just like Andrea Yates. I was a monster. They put me on medications, I can’t possibly remember which ones now. They encouraged me to find a therapist. And told me to take is very slow and easy, to not let myself get overwhelmed or exhausted, that those would certainly trigger the hallucinations again. In the next months I tried going back to work, had my kids with me at certain times but they spent more and more time with their grandparents. I tried, I really did, but I was failing. I wasn’t getting better. Several months down the line the doctor said this was no longer post partum psychosis. They threw out a new diagnosis. Bipolar Type II. The real war began.

To my Mom…You are a hero

I didn’t get a chance to write this yesterday. I wanted to but my head wasn’t in the right place. I pondered for weeks what I could get my mom for mother’s day. She isn’t your typical mom, much less a typical woman. Her needs and wants are hardly expressed and mostly, she is content. Except she misses her grandbabies. 😘

My mom is human this she is flawed and imperfect. Her biggest flaw to me though is not seeing just how incredible she is, how strong she is, how intelligent she is, and the most loving soul I have had the privilege to know.

My mom fought so hard against mental illness and stigma. And there were days she failed, but she found a way to keep going. I’ve been there Mom, I know how hard that is. I know how much it hurts and the guilt and the fear that envelopes us.

Your fight, your strength, your bravery (yes you are incredibly brave) helped me through my darkest and deepest hells. I don’t need to compare our life experiences, there can’t be but we have both been in hell and clawed and fought our way back. We still traverse the pits at times but we go through it together.

I see soany other daughters have horrible relationships with their moms. I want to cry for them. Regardless of what happened in our past we hold on to each other and we are more than just.mother and daughter. We always will be. Mom, I couldn’t think of anything to get for you but I can give words to just how proud I am to be your daughter. How you have helped me through the worst times, watched over our little angels with more love than I could have hoped for, and held me when I needed you most. I love you and I miss you every day. You can never know what kind of hero you are because you can’t see what the rest of us see. Thank you for everything, thank you for your unduing love and support. Thank you for being my Mom.

TMS day 6 – 11

TMS day 6 – 11

It’s been awhile. Sorry, been a bit busy what with 13-16 appointments per week and exhaustion, burnout, and well life. Had a couple medical issues from family members and they are tearing apart my apartment wI love those moments when I feel like loving life again.hich is driving absolutely crazy. Yes I used the word crazy and no I don’t feel guilty, I have a right to that word because I have been crazy and insane and it applies. It’s mine, back off!

Anyways, the TMS has been working for a few hours after each treatment. I have had a few setbacks due to missing days or because my medicines or hormones got screwed up. I found I cannot take Vistaril for anxiety. It creates this simmering pool of rage just below the skin that overwhelms me and terrifies me. Yeah, little known side effect. I’m also off today to get my new GP to increase my estradiol because if I don’t get my levels up then I’m not setting up the TMS and ME for the best chance of success.

I have gotten so used to that stifling mess that having it lift and come back is akin to being in solitary and given a glimpse of another person who smiles at you, then taken away before you have a chance to smile back.

I’m up to full strength on both sides. I definitely can tell it helps with my anxiety and I feel lighter after each treatment. Currently that feeling does go away in the evenings and I feel like this stifling fog has layered itself back over me. To be honest, I hate that. I have gotten so used to that stifling mess that having it lift and come back is akin to being in solitary and given a glimpse of another person who smiles at you, then taken away before you have a chance to smile back.

I want desperately to feel well, rested, and like I can live again. I was both elated and crushed when I got my response from my disability review… “Your disability is continuing.”

I cried both out of relief that I wasn’t going to be shoved off the deep end and possibly back into psychosis but at the same time so sad that this is me now. I am that person, with a truly invisible disability, constantly judged by society who has no inkling of what my life has been or continues to be. I miss work, I still dream of walking into one of those beautiful high rise buildings in downtown Bellevue and sitting behind a desk going over year end financial statements. I want to be that powerful individual who provides for their family and can whisk away to great vacations and buy the car of my dreams. I want to earn an income to allow my husband a chance at retirement.

Stress though can lead me straight back though. It affects my hormones, thus I can’t allow more stress until there are better answers to my hormones issues and resulting mood disorder.

I love those moments when I feel like loving life again

So far, no side effects from TMS. YAY! I am truly thankful for that as I seem to be so sensitive to so much now.

I’m learning more about natural ways to help me. Meditation and I’m looking at essential oils, even if it just helps me feel a little calmer I’ll take it. My vitamins/minerals are crucial and cannot say enough about a good magnesium and vitamin D3 with K2.

I’m doing all that I can to set myself up for success. I’m hoping my insurance will approve maintenance TMS treatments for me if I should need them. The hope is eventually my brain will be trained to keep the activity level changes TMS is making to my neurons. Keeping fingers crossed and I promise to keep updating when I can!

I love feeling light. I love that the racing thoughts disappear for awhile. I love that I am able to sit outside and enjoy the sunshine and not care what others think of me. I love those moments when I feel like loving life again.

TMS Day 5 – I’m so tired!

It was a long weekend! Day 5 TMS treatment was Monday, but I wanted to wait for 24 hours to give me time to analyze a whole day. So like I said in Day 4 my hormones got messed up and my worst days would be Friday and Saturday. Saturday proved to be a doozy for me, I was all over the place and it was bad. I also had a damn virus and felt physically miserable which just exacerbates everything else.

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Monday I was still recovering from the weekend. I panicked in the morning because apparently, I forgot to turn my alarm, but my body faithfully woke me up right at 7 AM. Got my kids ready, my TMS appointment was at 9 so I decided since I had to leave pretty early I could also take my kids to school. They were thrilled with me. They don’t really enjoy the bus, it’s too noisy and busy for them. I don’t blame them at all. I got them dropped out at school, got me a drink from a local 7-11 and headed into traffic to get downtown.

Going in I had to do my weekly mood/sleep/anxiety questionnaires. For the past several months I didn’t really have to think about it, because my answers had always been the same. It wasn’t getting better. Now though, instead I had to actually think about certain questions. It wasn’t that it was huge improvements, but that it was a noticeable difference under certain categories. Like my sleep wasn’t as disturbed, I had periods where my thoughts weren’t jumping to anxiety-inducing thought after thought. I was still sad a lot of the time, but not all the time. I didn’t feel hopeless all the time either. I had more than one bought of hope, of clarity, of when breathing wasn’t a chore. I had occasions where I could see a break in the cloud of depression and pain. I noticed even though I had a horrible weekend, I did not have any panic attacks. My mind didn’t keep poking at the constant annihilation anxiety that keeps sitting back there and laughs at every hopeful thought of mine.

I struggle with depressive realism, yeah it’s a real thing, and I come off as extremely jaded, cynical, and completely the opposite of the happy go, lucky person, I used to be. I mean that is what usually happens in life right? You grow from your experience and become jaded? But jaded to the fact that you should try to find something in life to enjoy? That there is even a reason to experience happiness in life if you are just going to die and your whole self is tossed into oblivion? Yeah. Happy thoughts.

Anyways, back to the topic brain, stop running away.

Treatment was easy Monday. Its becoming routine now, I go in, get settled in, chat with the TMS tech about how I’m feeling and any adjustments I need to make. I plug into and watch my heroes on Supernatural, my Winchester Brothers, and Castiel, my guardian angel in a trench coat and ignore the tapping on my head. Max strength and frequency on the right and I was at 115% on the left. Nearly to 120%.

I was in an out faster than I thought. I enjoy just going and sitting and not really having to think about doing anything for 40 minutes total and enjoying my show without guilt.

As I left, I made sure to pay even more attention to my mood and anxiety levels. I noticed it all day. I checked in with myself often. I am often hyperaware of my thoughts and emotions anyways, but usually I get bogged down in them. I didn’t today. I could check in and move on.

Until around 4:30-5:00 pm.  I burned out at that point and my mood noticably dropped. My sensory issues came up, my irritability came up, and so did my anxiety. It was the cloud lowering back down and enveloping my mind. I knew though I just had to get through to the next day, the next treatment. I knew that the TMS was making a difference, just for several hours, but maybe my brain could learn to what it needed to do. Maybe this old dog could be taught new tricks.

Much love my peeps.

2 Years Post Menstrual Psychosis

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.

TMS Day 4 – Freakin Hormones

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!

Day 2 & 3 of TMS

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.

TMS? What the hell is that? Day 1

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!