7/10/21: Update to original post: The reprieve from insomnia was short lived. After approximately one month, it returned. I still haven’t resumed the sleep aids nightly and only take a Unisom once or twice a week now. I am curious it is related to stress and anxiety as far as the sleep issues returning full bore – maybe. Then again, perhaps it is just the normalcy of me having DSPD…since my sleep clock is just super wonky. I am back in the office frequently now so unfortunately the extra time I used to get my “good morning sleep” is waning. But this is life – adjusting! Hopefully someday I can sleep normally again…it was nice while it lasted!

It all started in the summer of 2009. I graduated from high school and was getting ready to leave for college. Something just “happened” and I could no longer sleep. Now I wasn’t stressed or worried or anything of the sort. More so, it felt like my body just decided it didn’t want to sleep like a normal human anymore.

The strange thing was that if left to my own devices, I would sleep VERY well late into the morning. The issue has always been that I don’t have the luxury of sleeping in until 11 AM every morning. After trying Ambien, Lunesta, Melatonin, Light Box Therapy, Cognitive Behavioral Therapy, and countless other things that people “swore” worked, I started to lose hope.

After the failed attempts at all of the medication my doctor gave me at 18, I started taking Benadryl (diphenhydramine…I call it “diphen” for short) every night. I have been taking this every night for the past 12 years. This is aside from times that I tried new sleeping prescriptions (none of which ever worked.)

Sleep Specialist Appointments

I saw two sleep specialists over the years, both of who had diagnosed me with Delayed Sleep Phase Disorder. DSPD is a circadian rhythm disorder. It typically develops in adolescence and your circadian rhythm (sleep clock) becomes longer than the average person’s.

The first specialist recommended that I get a second shift job. That or move out to West coast in the PST zone. I kept living life the way I was for the next few years and then saw another sleep specialist some time after I moved to Ohio.

The specialist here reviewed my history. She verified that I’m already following good sleep hygiene. Some examples are: using a white noise machine, using blackout curtains, and keeping the room cold room at night. She stated that some people live with DSPD for life. But sometimes, it will randomly go away in your 30s or 40s. At that moment in my mid-20s…I had never been more excited to age! Because it was at least worth a shot in returning to some normalcy. She wanted me to get a sleep study at that time to rule out that the DSPD wasn’t due to my brain tumor. I never ended up doing the study. For some reason, I felt that it wouldn’t show anything and thought it a waste of time.

I had been trucking on since until the end of last year when my PCP recommended a sleep study. I was having a weird issue where I’d be about to fall asleep…but then felt like I couldn’t breathe. She thought it could be apnea and scheduled a sleep study. Then, she put me in touch with my same prior sleep specialist office. The first thing the nurse practitioner asked is if I got the sleep study the doctor ordered a few years prior (to ensure it wasn’t central apnea due to my brain tumor.) I admitted that I figured that wasn’t the reason and never got it. But stated I really did want to do it this time.

The Sleep Study

I did the sleep study at the end of December (which was quite the experience.) It came back showing that I had a very delayed REM onset. Which, given I have DSPD was not surprising. But no apnea. The issues with breathing had gone away right around the time of the sleep study so I’m curious if it was just anxiety, as summer through winter of 2020 were incredibly difficult months for me as my gram passed away.

In my follow up visit where she advised it showed delayed REM but no apnea, we had another discussion and I asked her if there were ANY sleep meds I haven’t tried yet. She said it looks like I tried them all except for Ramelteon – which works on melatonin receptors. I tried it and it was a bust.

A couple of months prior, my husband and I were talking about me possibly trying to quit taking Benadryl. So I also asked her if she thought stopping it may be an option since I know long term, it isn’t good for you. She said she actually was curious if it was even doing anything for me anymore since I built up such a tolerance (I was on roughly 75-100 mg a night when I stopped.) After she said that, I picked a week to take off work as I knew it would be miserable for me.

Please note: You should always consult with your doctor before starting or stopping any medication.

The Week of April 12th, 2021

The week came quickly and the last night I took Benadryl, my husband hid the bottle and started singing “The Sound of Silence” to me. It was actually quite hilarious.

Note: You can watch each day of my journey here: Diphen Detox.

From there on, I started the journey of stopping Benadryl. I opted to take Melatonin every night – which before did nothing alone but I knew I needed a little something, something if I was cold turkey quitting the Benadryl. The first night I didn’t sleep and felt really crappy the next day. I was immediately grateful that I took the week off of work. The next two days were even worse – I legit was going through withdrawal. I felt nauseated, sick as if I had the flu, and was beyond exhausted. Believe it or not, I actually almost cancelled my first Covid vaccine, scheduled for April 14th, because I was afraid that feeling sick would not be a good thing to mix with a vaccine. I ended up taking it anyhow and ironically, my husband ended up having a reaction (he is okay) so they gave him…Benadryl.

I told the RNs how I was stopping Benadryl that week after years and years of taking it. Both nurses told me that they had been on it, too. One had transitioned to Melatonin and the other is still taking it nightly.

That night, I had to get some sleep so we picked up some Unisom and that right there, changed everything. I took Unisom once in a blue moon when I needed a short cycle off of Benadryl but only for a day or two then went straight back to Benadryl. I slept that night and felt so much more rested Thursday morning. From there, I started sleeping normally. The melatonin now seems to work – magically.

Melatonin and The Pineal Gland

I’m a bit curious about my pineal involvement. The reason is that in my 20’s, it was discovered incidentally that I have a pineal gland cyst when I was having one of my regular MRI’s for my brain tumor. The pineal gland is our melatonin factory – and our “time keeper” essentially. There have been some studies on kids that have pineal cysts. Interestingly, some show these kids seem to have sleep disturbances or circadian rhythm disorders. However, pineal cysts are not treated unless they grow much larger and cause symptoms, such as headaches or pressure. That being said, there is no hard data showing pineal cysts for sure cause circadian rhythm disorders. Just an interesting thought.

From Then Till Now

A tiny annoyance is that I will now wake up super early sometimes and only get 5-6 hours of sleep. This is not a big deal as I still feel much more rested than when I took Benadryl since I’m getting quality sleep. The biggest issue is that I wake up in the middle of the night. Typically around 3-4 am and I cannot fall back asleep for an hour or so. I know sleep hygiene like the back of my hand so I don’t look at my phone or screen or anything like that but rather just lay there and try to meditate.

Sleep Specialist Follow Up

I met with my sleep specialist on the 30th just to ask her a few questions about the melatonin usage. She was, of course, elated for me that I am finally sleeping like a normal human being! I asked what is the optimal dosage for melatonin is and the best time to take it.

She stated that I should play around with the dose a bit, as well as the timing. Finding the sweet spot is like anything, it is different for everyone. Likewise, there is no scientific evidence that one form (gummies or tablets) work better – but a lot of people swear by the gummies. Because of the high safety level of this supplement, she has zero concerns about me being on it long term! And quite honestly, she said she feels better about the melatonin than sleep meds, including Benadryl.

Another thing she told me is that waking up between 3-4 am is “textbook” for stressors waking an individual up, as that is the time is typically happens. She recommended a sleep log where I track my dose, timing, stressors the day before, etc.

Thankful And Hopeful

It has been a long struggle with insomnia, roughly since May of 2009 to be exact. So I am very thankful to finally feel like a human being again. I “knew” I was tired and exhausted all the time. But I really didn’t realize just how bad off I felt until I started feeling better.

I am unsure if this reprieve from insomnia will last long-term or not but for now, I’m grateful. I’m still using all of the same sleep hygiene techniques as before and will not stop those (ex: white noise machine, blackout curtains, and a cold room at night.) For now, I will still keep my blog name “dreaming of deltas” , as it has only been a few weeks of finding those delta and other waves…but we will see down the road!

I hope for anyone else who has suffered for insomnia that you can find sleep again, too. Thank you for reading my story.

-Tiffany