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First: The Backstory

I am a 30-year-old female who can fall asleep while doing nearly anything. I actively noticed a decline in how awake I felt during the day around July 2018. In reality, it had likely been happening since around 2014, if not earlier like in high school. I always attributed my fatigue to stress, side effects of medications, depression, fluorescent lighting in office spaces… all of the normal factors that adults attribute or blame for being tired. Even back then, I would have to drink 4 cups of coffee just to try to function. At times, I would combine an energy drink, coffee, tea, and soda in a day and still fall asleep at 6 pm.

Photo by Jasmin Chew on Unsplash

In August 2018 I left a stressful and emotionally taxing job to attend school full time. My goal was to get a certificate in medical coding, creating a new career path for myself that would be less stressful and in the end, would be better off financially. I found in my previous job that researching medical conditions was interesting to me. I thought Medical Coding was a great way to be close to the medicine, which I found interesting, without having to deal with my fear of blood.

I started taking classes that changed my stress but did not reduce it. Without having a job to wake up to every day, and not be a morning person, I would sleep until 10 am every day and fall asleep around 2 am. Even with sleeping an average of 8 hours every night, my sleep app told me that I wasn’t getting very restful sleep. I would be trying to study medical terminology and fall asleep on my books. I would be watching a movie with the boyfriend on the couch, and fall asleep. I told myself it was because I wasn’t working, stress, and that studying was boring.

I dismissed my fatigue for a few months until I got so tired I slept 20 hours for 2 days in a row. I then realized just how bad my fatigue was getting. I did some googling/research to try and find some answers or solutions on my own. Since I was becoming familiar with some medicine and terms because of my schooling, I was able to understand and read medical journals and studies to narrow down the possible problems. For the average person, it is always good practice to NOT do this as there were a few times I thought “I have a tumor”, but desperate times…

I am still trying to find the answers as to what I have and the cause of my symptoms. My excessive daytime sleepiness, some stomach issues, and low libido (to name a few) are somethings that I don’t feel is “normal” and I’d like to find answers for.

After struggling to find a diagnosis for a year plus, I thought it might be helpful to others to hear about my story and the struggle involved. Maybe through my story, you can find a way to get a doctor to hear you or find an answer you may not have even been looking for, or through my information and sources find out what you or a loved one might have.

**I am not a medical doctor by any means, and even though this blog/journal may assist you, it is not intended to diagnose or suggest treatment. Any tests, forms of treatment, or diagnosis should be done or advised by a medical professional. This is about MY experiences, opinions, and stats related to me. Names (including my own) are changed to protect everyone involved. Any information I reference I will do my best to include sources and links so you can read more if you choose. To the best of my ability I try to find information that is credible or found in multiple trustworthy places.

Next In Finding My Diagnosis – Reaching Out

New PCP, New Possibilities?

After my last post, it took me a while to try and get back on track. After a while, I determined that at the least I needed a new PCP since my current one didn’t seem to care, among other things. I got a recommendation for a new PCP from some friends and scheduled an appointment. It took a while due to Covid and being a new patient for the new date to come up.

Photo by Nathan Dumlao on Unsplash

The first appointment with a new doctor, I always go in open-minded but cautious. I watch how they operate, manage the appointment, reactions to my answers that might indicate bias, anything and everything that could give me a clue as to if this office/doctor is right for me. Normally, I have leaned towards offices that are all digital. Putting everything directly into a computer or tablet. I’ve come across a few offices that wrote things on scrap paper, post-it notes, etc that I did not trust to make it into my medical file to be properly documented. I’m of two minds on how much they take note of, or if they have the practice of only listening and never writing down anything, on which is better.

The Medical Assistant came in, took basic info like medications (currently none) and other lifestyle habits like exercise, diet, etc. The doctor came in and spent 75% of the time asking specific direct questions about my fatigue, what I’ve tried, what tests have been run, etc. all the while taking notes as a hard copy. By the time we were done, the paper was filled with notes. She decided the first steps were to run a ton of blood tests, including vitamin levels, routine CBC, Lyme disease, everything. I was really pleased because no other doctor had taken these simple steps to help me find an answer. At least rule out the simple answers, before going into the complex and expensive ideas. She did leave the door open that if the tests showed nothing, MRI would be the next logical step.

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I waited a bit patiently but I was anxious about my results and finally, they came in. Turns out, I’m deficient in a lot of vitamins. Vitamins such as Folic acid, Vitamin B, D (and maybe others), and Iron and are the only ones I could jot down quick enough. They instructed me to take OTC Folic Acid 1000 mg, Multivitamin that included Vitamin B, D, and C, and Iron 25 mg 3 times per day. They instructed me to try it for a while and follow up in 4-6 weeks for repeat blood work. Everything else they ran (Lyme disease and such) all came back negative. I’ve included my specific numbers for those of you that may be curious and the levels of where they are supposed to be. I’ve done some follow up blood work since and still waiting on the call from my doctor to see if any adjustments need to be made.

I was so happy, finally, something I could try and do that might actually help! And specific direction on where to point my diet instead of “eat healthier”. I still have to research what foods and vitamins are best, but I know that spinach, carrots, and broccoli have all of the vitamins I have been missing. Thankfully I had most of the vitamins on hand because I’ve tried it before, but I was hoping with the right combo it might make a difference. If I find any articles supporting my search, I will be sure to share! Or if I find some recipes that help us junk-food eaters make the switch.

I’m starting simple by changing out lettuce with spinach, eating less frozen pizza, and selecting the best veggies with nutritional value. Most of the veggies I had been eating have been lettuce, tomato, cucumbers, etc. which (as I have now found out) have almost no nutritional value. I’ve also been trying to eat more of a variety of fruits instead of chips and other bad-habit foods. My doctor advised that taking my iron with a glass of OJ would help the iron absorb into my system, but my stomach isn’t a fan of acidity. One glass of OJ would have me doubled over in pain, so I am exploring other Vitamin C options.

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TestNormal RangesNov 2020Jan 2021
LymeNegative
TSH0.35 – 5.02.213
Iron50 – 1703154
Iron Binding250 – 450459325
% Iron Saturation15 – 45717
Vitamin D30.0 – 10012.124.2
Vitamin B12211 – 911256504
Folate/Folic Acid>5.44.113.5
Ferritin8 – 252418
BUN6 – 20910
Anion Gap10 – 2099
Previous: Excuse me while I scream and cry

Latest from the Blog

More on Idiopathic Hypersomnia

I know I have mentioned Idiopathic Hypersomnia in previous posts, but I wanted to expand more on it in a single post and provide more details. In my opinion, even medical personnel are unfamiliar with this concept because it is so new. I thought putting the information in one location might help others the wayContinue reading “More on Idiopathic Hypersomnia”

Excuse me while I scream and cry

It took 2 weeks to get my results back from the sleep clinic, but I got them. I do not have narcolepsy and my average sleep latency (how long it took me to fall asleep) was 13+ min so I do not fall within the idiopathic hypersomnia diagnostic criteria. What does this mean?


Back to square one. No diagnosis, it is not a sleep disorder.


This post is mainly going to be about my current emotions. I need someplace to vent about…. well, everything. I feel stupid. Depressed. Angry – at myself, healthcare, doctors, everything. I feel like crawling into bed and staying there forever and hoping someday I will wake up with energy. Realistically I know that isn’t likely to happen, but I can hope.

Photo by Anthony Tran on Unsplash

It has me wondering, is there something wrong with me? Or was my primary doctor right and it is just because I am getting older? But then I see 40-60-year-olds running at 6 am. I see moms with their makeup done and looking amazing dropping their kids off at school at 7 am. Here I am, unable to keep my eyes open while having a meaningful conversation with my friends and significant other. This can’t be what everyone deals with every day…. right? And even if this is, how does everyone else do it? Am I just not that strong? Did I not pass the right “Adulting test” to unlock the secret to being awake?

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What kind of quality of life can I lead when I can’t sip a beer without falling asleep? I can’t do the things I love because I can’t keep my head up. All of my energy goes into staying awake while working. I am supposed to go camping soon, but I am worried I won’t have the energy to even hike like I love to do. It has now gotten to the point where I am forgetting simple words when having a conversation. My partner wants to talk about interesting things and his passions, but I have to tell him that my brain isn’t working well enough to process and respond appropriately.

I don’t understand why this is so difficult. I don’t understand why I had to go through the sleep study when it would’ve been cheaper and easier for everyone to just run some more blood samples. Now I have to continue to fight with doctors, insurance, and my bank account to get some semblance of answers, and that’s if I want to continue fighting.

I can only imagine that this is the exact process that people with chronic pain go through. Endless denials, tests, and money only to be told “There is nothing wrong, you are overreacting.” I’ve seen too many stories about doctors being dismissive of pain, and I thank the universe I do not have pain with this (though, who knows, it could be coming). At least with pain though I could point to where it hurts. Where do I point for fatigue?

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The sleep doctor gave me a print out of my results for my copy, but I haven’t brought myself to look at them at all. I already know its pointless to look. I don’t have the motivation to keep searching for answers. I’ve already spent $2,000 on just the sleep/nap study and I can’t afford to get an unspecified number of tests done for who knows how much cost.

I have an appointment with my psychiatrist next week. From the implication of the sleep specialist, he thinks its depression. My argument would be that the depression meds I’ve been on for 1-2 years would’ve changed something if that was the case. I didn’t bother arguing with him. His job is done and he checked for everything he could. I’m going to speak with my psychiatrist next appointment, and confirm that it is not ADHD and/or depression.

I keep seeing Facebook posts about ADHD symptoms, explanations, and “living with ADHD” and I relate to 90% of them. However, with my Mom likely having ADHD/ADD, it’s debatable on nature vs nurture. Regardless, I’ve learned to live with the quirks and I’ve got a decent handle on it (minus the fatigue).

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Depending on what my psychiatrist says is going to depend on if I’m going to be sticking with him or not. I went to him originally to help get to the bottom of this and to make sure my combo of meds was Ok for me. If he’s not going to help, then he’s not worth my time and money.

I’m hoping a weekend away and out of the house, I can find the strength again to power through and keep searching for an answer. However, I’m not sure where to start again. Maybe a new PCP can be my compass and point me in a new direction. I want to do more testing before the end of the year so I can hopefully meet my deductible and it won’t be out of my pocket, but time will tell if I can summon the courage and the strength to power forward.

Next: New PCP, New Possibilities?

To Do: Sleep Study – DONE

A few nights ago I officially had my sleep study and the results are pending. I should find out next week what the results are. Even though the nurse wasn’t supposed to tell me, because she liked me I guess, she told me I didn’t have sleep apnea (duh!). But it was nice to hear of the confirmation.

Photo by Ashkan Forouzani on Unsplash


I met with the sleep and pulmonologist specialist a few weeks ago and he is by far the best doctor I have come across. I just found a sleep clinic in my area and scheduled the appointment without a referral because my PCP was being difficult. When I arrived I was immediately impressed with how they were handling the Covid-19 situation. They had me call to notify of my arrival, told me to wait outside the clinic instead of the waiting room. They brought me right into the patient room. Masks and social distancing as much as possible. The nurses did their thing by checking my lung capacity and such. I assume it was fine and normal, but they didn’t say one way or another.


Then the doctor came in. He listened to my condensed story of problems, seemed to empathize with my “PCP doctor was useless”, and didn’t interrupt when I was speaking (which blew me away)! I was using medical terms that I was familiar with from my research and other experience to help the doctor take me seriously. Though my experience with other doctors, I knew that by using specific examples (nodding off while in line at the store, sleeping over 10 hours per day, etc) and by using terms like “cataplexy” they would hopefully know that I’m not messing around. The doctor responded by using similar terms and phrases, which led to me nodding along, agreeing with everything he said.

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I wish I could’ve recorded our conversation because it was an early morning appointment and with my fatigue, my brain isn’t working at capacity so I don’t remember nearly enough, but I agreed with everything that he said. He openly stated that it doesn’t sound like I have sleep apnea based on my symptoms. What made me question was when I mentioned who my PCP was, he seemed kind of surprised that I had an issue with him.


At this point, he is pretty sure I am leaning more towards Narcolepsy without Cataplexia, a sleep disorder which causes my sleep patterns to be off (he didn’t mention a disorder name), or plain old Idiopathic reason. He explained how a sleep study and Multiple Sleep Latency Test (MSLT) would be needed for all of these tests. I explained how I was worried about the cost, and he explained that all of the cheaper sleep study options are not going to help with my situation. The at-home sleep tests wouldn’t measure brain waves and such that would be needed. I knew that was a possibility but I was hopeful.

He explained that if the sleep and nap study showed nothing, then it could be any number of things, but at this point, a sleep/nap study is needed to rule out sleep disorders. I joked that I was hoping my watch would be enough, and he seemed almost excited that I knew about those tests. I pointed out how the apple watch can be MORE accurate according to the study I read. However, it doesn’t read brain waves like an EEG does, so a full sleep/nap study is needed.


To prep for my sleep study, I was off of my Adderall for over a week, and the day of I made sure to wake up at 8 am and have no caffeine all day. I was aware that the sleep study would be uncomfortable and difficult to sleep because of the wires and such, so I wanted to make sure that was as easy as possible. I get there and the nurse is talking nonstop. She seemed to talk like me when I have too much caffeine – which for being an overnight nurse I don’t blame her at all! She was impressed with how much I knew about the sleep study and the MSLT nap study, so she was just talking about anything and everything because I knew how it would all work.


She connected about 30 wires to me, some in my hair, on my head, all over my face, my chest, legs, arms… had me sign a waiver to be video recorded (I understand why, but creepy!) and set me up with snoring and breathing recorders. She also informed me that she would be waking me up around 5:30-6 am!! I warned her that I was not a morning person. She was very nice and personable, we joked about our husbands/bed partners and the silly things men do. She turned off the light, told me she will only come in and bug me if one of the wires gets disconnected.

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It took me about 45 min to fall asleep, because it was a new place, no white noise like I am used to, wires tugging… But I felt like a blinked and it was morning. They disconnected about half the wires for the nap study but left all of the ones on my head. I had to carry around this box where my wires were connected all day. At 7:30 am a new nurse came in and set me up for my first nap. This time she set me up with a white noise machine since the office was open and such. I napped for 20 min, she woke me up and we repeated about 5 more times that day. Awake for 2 hours, nap for 20 min, repeat.

Around noon I was half asleep and started to ask but had difficulty forming the thought:
Me: “How much…?”
Nurse: “How much more of this torture?”
We both laughed, but it was kinda true. Some people may think “Oooh, you get to nap all day!” No, not at all.

The naps are un-refreshing and annoying to be woken up repeatedly.
I went home and got a few things done, had caffeine to get rid of my headache. And sat around waiting for the results. According to the digging that I did and the very little they were allowed to tell me while waiting for the doctor’s “official results” I did not hit REM at all during the naps which means no narcolepsy. Meanwhile, I am collecting references to find a new PCP. No matter how everything comes back, I will still need one.


I can only hope that this leads to answers, but time will tell.

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Next Post: Excuse me while I scream and cry
My Story

Second: Reaching Out

The list of conditions that I had narrowed it down to was: hypothyroid disorder, abnormal estrogen/testosterone levels (or levels that weren’t right for me), chronic fatigue syndrome, narcolepsy, circadian rhythm disorder, depression, etc. So many conditions could be possible, but all of them needed to be diagnosed by a medical professional. I contacted my PCPContinue reading “Second: Reaching Out”

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My Gut Says There is Something Wrong

I have off and on gastric issues, mostly nausea and seemingly random abdominal discomfort. I will walk through my symptoms, what I tried, and what finally worked. 80% of this was done without help from a physician because I found my PCPs to be useless and completely unhelpful about my gastric issues.

Photo by ian dooley on Unsplash

I started having constant nausea over 4 years ago. No matter what I did, ate, or didn’t eat, had any effect. I went to my then doctor, and he tossed anxiety meds at me and dismissed me. They helped but didn’t fix the overall issue, or my concern that it might be something more. I went back, exclaimed my concerns, so he then sent me for an Upper Endoscopy, medically known as Esophagogastroduodenoscopy. Let me tell you, that was something. In the short version, it cost me $3,000 after insurance and left me with no answers.

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If you’ve never had an Endoscopy before, it’s something else. It’s an outpatient procedure, and I was in and out within a few hours. I couldn’t eat or drink anything for over 12 hours before the procedure. They tried to connect me to an IV, but my veins have always been uncooperative, so I had a lovely little bruise as a souvenir. I had to change into a gown, had the hospital bed, the whole nine yards. My significant other was able to stay with me until I was brought into the procedure room. The procedure room was scary, dark, and my anxiety was rocketing.

I look at the clock, it was 2 pm. They asked me to verify my information and put something in my mouth to keep it open during the procedure. They had me roll over onto my side and numbed my throat. The anesthesiologist asked me to count down from 100. I got to 99 and that’s all I remember. Next thing I know I wake up and ask them if that was it because it was quick. They chuckled and I looked at the clock, it was 2:20. The doctor told my woozy self that they didn’t see any cause of nausea but they took a biopsy to check for celiac disease.

Thankfully, my significant other kept his promise of not recording me on anesthesia, and I can’t recall what I said but I know he found it amusing. My throat was sore for about 3 days after that, and I was tired but couldn’t sleep. Otherwise, there was no pain or problems for me. The only pain was paying off the test for 2 years after the fact.

Once I got my stress under control and increased my anxiety med, my nausea eventually subsided. Until what seemed like overnight, things got worse. Anytime I ate nearly anything I had to lay down for hours due to the discomfort. To this day I still don’t quite know how to explain it. It felt like gas and pressure, but it wasn’t. The best way I can describe the feeling is it felt like I ate a whole pan of bad, greasy, rock-like meatloaf and my gastrointestinal tract just could not digest it. It felt stuck, and like a lump.

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To figure out what triggered it, I changed my diet and tracked all of my food for at least a month. I ate nothing but chicken, white rice, and veggies. I removed all sugar, alcohol, fats, dairy, everything that could be a trigger. I slowly introduced the foods that would be the most likely culprits, starting with dairy. After having some cheese and the symptoms came back, I came to terms with the fact that I may suddenly be lactose intolerant which this occurring later in life is not unheard of. I fought against it since I adore cheese.

A friend gave me some pills that worked for a while, a dairy digestive pill. I took two before every meal and was able to eat a bucket of cheese without issues. I was thrilled! I got my life back! Until… it all got worse. After a while, it wasn’t just cheese that set off my stomach. I would eggs, peanut butter, anything and everything set off my stomach. Even chicken set me off. For the longest time, I avoided eating because everything set me off. Even plain chicken and white rice. I was so frustrated and done. All of the research I did, I could not find an answer for my stomach reacting to EVERYTHING.

Until one day, when I sat down with my food journal and determined to figure it out. After spending hours searching, I stumbled across one article which leads me to another and another, and then to a possible answer. What I realized, was everything that set off my stomach, was related to proteins and fat. Anything that had any remote amount of fat or certain proteins (like steak, chicken, beans, etc) would set my gastro track off with the abdominal discomfort. The article below is what lead me to this and explained everything.
https://healthyeating.sfgate.com/improve-protein-digestibility-10068.html

Paraphrasing the article, my body wasn’t generating the correct digestive enzymes to break down fat and proteins so I needed a bit of help. After going through this article, I ordered some pills off of Amazon. I was hesitant because I didn’t want to fall into the “diet pill” trap. I was worried about ordering somewhat expensive pills only for them to not work. However, I was desperate enough and took the risk. I ordered: Digestive Enzymes Ultra – Comprehensive Blend of Digestive Enzymes. Per the article, I ordered this one because it included more digestive enzymes than a standard probiotic.

The first thing I did to test these meds is to eat a pizza. I didn’t end up curled up on the couch for hours, and I had no discomfort! It took my significant other to ask if the medication worked before I realized that it had. I took the meds with every meal for nearly a month. I was able to eat everything again from cheese, to steak, to peanut butter. I haven’t had a bowl of cereal in 5 years, but now I can! It has even got to a point where I don’t need the pills anymore. To emphasize how much better I’m doing, tonight for dinner I had buffalo wings with ranch. Years ago that would’ve been unthinkable unless I wanted to spend the evening in pain.

I thought that the lack of protein would’ve to lead me down the path of figuring out my extreme fatigue that maybe it could be a diet-related connection. It doesn’t fit through because even when I was taking the digestive pills, my energy should’ve increased when instead it stayed consistent. So, I continue my search for my fatigue diagnoses, but at least I can eat ice cream again.

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Next Post: To Do: Sleep Study
The Backstory

First: The Backstory

I am a 30-year-old female who can fall asleep while doing nearly anything. I actively noticed a decline in how awake I felt during the day around July 2018. In reality, it had likely been happening since around 2014, if not earlier like in high school. I always attributed my fatigue to stress, side effectsContinue reading “First: The Backstory”

A minor upside to the pandemic

I could give many reasons why my updates have been delayed such as the pandemic depression hit and finding the energy to type this up and research whatever the **** I have is just too draining. Or, I started a new/old job so I’ve been solely focused on that.

However, the reality is while all of those things are true, I honestly hit another rough patch while trying to get to the bottom of this issue. I was going through another “am I imagining this? Is this really something worth fighting the medical system for?” Today is a good day, so I am saying Yes, this is worth the fight and my energy.

Photo by Matthieu Joannon on Unsplash

To be fair, the only reason why I even have enough energy right now is that I’ve started a new medication: Adderall. I was on a baby dose before, but now my does is triple and I feel how I used too many years ago, awake and normal. Although, it took nearly 3 weeks for my insurance and psychiatrist to work together and agree that I shouldn’t have to pay out of pocket for this med.

I have to say though, I’ve discovered an upside to the medical system during this pandemic. Doctors in a large city near me are allowing virtual conversations with doctors, an option that wasn’t possible before. I would’ve had to take the day off of work, traveled two hours one way, and countless toll money to have a 15 min conversation. Now, I have a virtual conversation scheduled with a neurologist this week!

I had to put off seeing the sleep specialist due to starting a job, but that has been moved to two weeks from now. I’m sure both appointments will be spent convincing them I don’t have sleep apnea and there has to be another explanation, but I’d like to think that at least one of them will have to listen.

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The sleep apnea symptoms include snoring, gasping for air during sleep, morning headache, etc. which normally a bed partner would notice, which mine has not. As he stated, he watches me sleep on occasion, and I have none of the signs. I’ve come across many people who have had it in the past and informed THEM that they have it, but no one has ever told me about any of these signs. Doctors and everyone else have said “you may not know you have it until someone tells you…” but trust me, I would know.
Sleep Apnea Info: https://www.mayoclinic.org/diseases-conditions/sleep-apnea/symptoms-causes/syc-20377631

My new/old job is a job I left years ago, but it pays well, I get to work from home, and I know the ins and outs of the job already. Without giving away too much detail, the job entails talking to people and collecting their medical history. This is fascinating to me because I listen to the different conditions, people’s stories, and every few days I hear of a new medical condition that I’ve never heard of before. I get to hear how doctors treat different conditions, and sometimes the ways they are diagnosed. I’m hoping this might lead me somewhere with this process. At the very least it pays the bills!

I took my dose a little late on Saturday because I slept in – or more like I couldn’t wake up after sleeping 14 hours – so I had some bad insomnia Saturday night. I decided it might be better to skip my Adderall dose on Sunday so I could get back to a regular sleep schedule. Of course, this was the same day I went to visit the in-laws. I gave my father-in-law, who has a fair amount of medical knowledge due to previously working in the healthcare field, a condensed version of everything in this blog, and the struggles with my medical experience. He made a couple of suggestions such as: bringing my S.O. with to the doctors’ appointments to vouch for me because doctors sometimes won’t listen simply because I am female.

Looking at the positive of being tired all day, it reminded me of what I was like before my current medication. Since I have been taking my new med, I keep thinking “this is working, I could just stay on this med“. Then, days when I’m off my med hit and I need an answer. I need to have an answer to what this is. It’s not knowing which is worse.

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Next: My gut says there is something wrong

More on Idiopathic Hypersomnia

I know I have mentioned Idiopathic Hypersomnia in previous posts, but I wanted to expand more on it in a single post and provide more details. In my opinion, even medical personnel are unfamiliar with this concept because it is so new. I thought putting the information in one location might help others the way it helped me.

Photo by Sanah Suvarna on Unsplash


When I scheduled my appointment with the sleep clinic physician, the receptionist seemed confused about my use of the term “idiopathic hypersomnia”. I was surprised to find that even the sleep clinic didn’t seem to have any idea what I meant by it. “Idiopathic” is a fancy medical term for “unknown cause”. “Hypersomnia” is oversleeping or sleeping excessively.

“Idiopathic hypersomnia is an uncommon sleep disorder that causes you to be excessively sleepy during the day even after a good night’s sleep. It also often causes difficulty waking up after you’ve been asleep at night or for a nap. Naps generally aren’t refreshing.”

https://www.mayoclinic.org/diseases-conditions/hypersomnia/symptoms-causes/syc-20362332#:~:text=Idiopathic%20hypersomnia%20is%20an%20uncommon,Naps%20generally%20aren’t%20refreshing.

To put it simply, Idiopathic Hypersomnia (IH) is in the same family as narcolepsy. The difference between the two is narcolepsy causes you to somewhat instantly fall asleep after a trigger (anger, increase in heart rate or blood pressure, etc). Whereas, IH, is just when you are sleepy when you wake up and throughout the day no matter how good of sleep you got or how much you sleep.

The doctors are currently convinced I have sleep apnea which is causing a lack of sleep. Sleep apnea is usually when a person has trouble breathing at night causing snoring and gasping for air causing the person to wake up (even if they don’t recall it). It can cause extreme fatigue because the person doesn’t cycle through sleep like normal and it causes constantly interrupted sleep. Sleep apnea is usually found in those who are overweight or have other contributing illnesses. Sleep apnea is extremely common, but if left untreated can cause severe heart problems later in life. It can be treated with a sleep mask machine called a CPAP or BiPap.
More information on sleep apnea: https://www.sleepfoundation.org/sleep-apnea

The problem for me is knowing quite a bit about Sleep Apnea, to the point where I have told my roommate, my partner, and a few friends that they should get tested, so I know I don’t have it. It is still something I have to rule out before doctors will likely explore further.

There sadly isn’t a lot of information on the cause of IH because it is so new. They just only started seeing signs of it in 2012. From the information that I have found, hypersomnia in general could be caused by anything from alcohol to a head injury. Anyone can experience hypersomnia, but if you experience excessive sleepiness for 3+ months then it may be considered Idiopathic Hypersomnia, especially if there are no other causes found.

Medicine is studying the chemicals in the brain that may help explain why people like me have extreme sleepiness. A couple of sources that I found states that they think it might be related to a chemical they named GABA (gamma-aminobutyric acid). This chemical is the equivalent to taking a sleep aid, except your brain doesn’t know how or when to stop making it.

Treatments for it are not very effective because it is so new and they seemed to only just come up with the diagnostic criteria for it. The standard thing that physicians do is try to prescribe stimulants like Adderall – as they did with me – which have been shown to not really work. In my opinion, it’s like drinking coffee when you are drunk. It might wake you up for a short time, but in the end, you are still drunk and just want to go to bed.

They have 3 or so non-FDA approved medications for IH. Because IH is so new and they are still figuring it out, they can’t officially list it as a way to treat it, so they go “off-brand”. I bet my insurance will have fun with that if/when the time comes. Typically if stimulants don’t work, physicians will try to prescribe medication that is used for narcolepsy. Because IH and narcolepsy are in the same general family of medicine, sometimes it helps according to the articles.

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My experience with this so far has been rough. I will be in the middle of eating dinner at home with my spouse and my eyes will get too heavy to open. We are struggling to connect because of my fatigue. I store all of my energy for the end of the day when he is done with work just so I can talk to him, and even then I have difficulty forming basic words due to my fatigue and have to go lay down by 8 pm because I simply do not have the energy. Two days ago, I fell asleep at 11 pm, woke up at 9 am, moved to the couch, and fell immediately sleep until 1 pm. Even with doing this same process nearly every day, I am still falling asleep while typing this, or while watching TV, and worse yet, I even close my eyes when walking the dog because I don’t have the energy to keep them open.

I hope to speak with my psychiatrist and see if he can’t prescribe me some meds specifically for IH, or at least encourage him to look into the possibility of me having it. Meanwhile, I still have to wait a week or two to meet with the sleep clinic specialist and hopefully, they can try to rule out sleep apnea so my other doctors can dismiss the idea. Or, they can verify if I have IH or if it is something else. I may be updating this post with other articles or information I find related to IH as time goes on.

In the next post, I will likely be discussing the possibility of my digestive discomfort being a possible reason for my fatigue. I will include some articles that I found that might help those that feel nauseous when they eat nearly anything (like me!). Don’t worry, I am going to leave out all of the gross stuff and just speak about my findings and what symptoms I experience.

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Think you have Idiopathic Hypersomnia? Check this out: https://www.hypersomniafoundation.org/wp-content/uploads/IH-Characteristics-and-Diagnostic-Criteria.pdf
Want to read a medical journal article about IH? Check this out: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2266276/#__sec7title

Next: A minor upside to the pandemic

Scheduling Apointments – Oh Joy

My next goal is to explore my other options and continue my research, trying to find ways of treating myself at home, or trying new methods of approaching doctors.

Photo by Estée Janssens on Unsplash

I have reached out to a sleep clinic nearby, hoping to get a suggestion or even a lead to which avenue I should take next. I’ve been doing some research on sleep tests that can be done at home that can usually be done for 1/5th of the price as a full sleep study. Cool thing, some studies have been done, and it’s possible that the Apple Watch sleep tracker is surprisingly more accurate than the clinic gold standard home test version of a sleep tracker watch. The medical test is called an actigraphy. It hasn’t been verified officially yet with enough testing so they can’t “officially” use those results. But I’m hoping at least it could be used and save me some money. 
More information on this test here: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3109647/

I heard back from the sleep clinic and have an appointment scheduled for sometime in July. The lady from the clinic that I spoke to seemed baffled by the terms that I used like “idiopathic hypersomnia”. Though she found it amusing that I included my Epworth sleepiness scale in my original message to them.

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For those that may have missed it earlier, at this point in my research I am pretty sure I have something along the lines of Idiopathic Hypersomnia. In simple terms, it is the opposite of insomnia. Instead of not being able to sleep, I can’t stop sleeping. “Idiopathic” is the medical term for “we don’t know why”. It is in the same family of narcolepsy, just without the instant sleep caused by a trigger.

The Epworth Sleepiness Scale is a questionnaire used to try and figure how just how tired someone is. For example, my partner scored a 6 out of 24 on his scale. Meaning, he might fall asleep in front of the TV occasionally, rarely as a passenger in the car, and never while stuck in traffic. Whereas my score was at least an 18 out of 24, meaning if I didn’t fight it every second, I could easily fall asleep anywhere anytime and that I need to seek medical help (duh!).
Epworth Sleepiness Scale: http://healthysleep.med.harvard.edu/narcolepsy/diagnosing-narcolepsy/epworth-sleepiness-scale

It kind of surprised me that none of the doctors that I have spoken to are familiar with the term Idiopathic Hypersomnia, even the sleep clinic. I took one medical terminology class and I understood it when I first saw the term. The problem is this term just started being used only a few years ago and is still trying to be understood and tested. There are only 2-3 medications out there that may be able to help if it truly is IH. I will likely be going much-much more in-depth about Hypersomnia in a later post but below is a link for some brief information on the subject.
Idiopathic Hypersomnia: https://www.hypersomniafoundation.org/wp-content/uploads/IH-Characteristics-and-Diagnostic-Criteria.pdf

I’m scheduled to speak with my psychiatrist on Monday. Apparently today my PCP denied my request to refill my anxiety meds even though he has been refilling it for 3+ years, and with no notification from the office as to why. I guess that answers my question to if I’m going to keep going back to my PCP. At least I have my psychiatrist to fall back on for the prescription.

I plan on explaining to my psychiatrist that my current meds of the amphetamine salts are not working and hopefully we can find something new to try. It is still amusing to me that he seems just as baffled by my brain chemistry as I am. This med should’ve worked. He explained that it should’ve given me a “caffeine” type of effect. Currently, I am taking it, but all it is doing is helping with my focus in creating this blog. It is taking all of the coffee and soda in the house to make sure that I don’t fall asleep on the keyboard.

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My psychiatrist showed interest over the last few sessions about reviewing my annual lab results to see if my physician may have missed something. I am really hoping he might be able to see something that I can’t or suggest an idea of how to move forward.

Funny enough, my brother just sent me a message with a screen-captured twitter post about ADHD in adults. Having ADHD is pretty likely for me since I have trouble focusing, I talk fast, forgetfulness, I get bored easily, start projects, and never finish them, etc. Though I’ve been like that for as long as I can remember but I always thought it was nature vs nurture situation. Do I have ADHD? or is that just who I am? or did I pick up my mother’s ADHD-like habits growing up? In my adulthood I’ve learned to manage and deal with these things by taking notes while on the phone, organizing so things are easier to find, keeping endless calendars, setting reminders, making a LOT of lists… but maybe its something my psychiatrist can help with or rule out. Time will tell.

Is it my Thyroid?

I’m comparing the past 3 years of annual blood tests to try and find a hint or connection for my extreme fatigue. My thyroid levels have been wacky, and some other results are barely within the norm for someone as young and “healthy” as me. Other numbers have been slightly decreasing and others increasing over the years. I am comparing everything yearly side-by-side to see if I can’t find some other clues as to what it could be.

Photo by Daniel Klein on Unsplash

For those of you who may not be familiar with the thyroid, the way my mother explained it to me as it is a butterfly shaped gland in your neck that controls your body’s release of certain hormones. Her example was the hormone that tells you when you are full. In the case of hypothyroidism, the body tells you that even after you have eaten a complete meal, you are still hungry. So you eat more and more, causing an increase in weight gain. In the situation of hyperthyroidism, the opposite occurs. Your body thinks it is full when it isn’t, causing you to lose weight drastically without trying.


I’m not going to bore you with the complete list of my lab results (but that may come later if I feel it may help others to compare) but I will cover some highlights. When I say my thyroid levels have been wacky, here is a break down of what I mean:

201820192020
My TSH4.021.812.59
Hypothyroid.5 or less
Hyperthyroid5 or greater

Typically, if you have an UNDER active thyroid (hypothyroidism) your TSH number will be below 0.5. The typical signs of hypothyroidism are gaining weight, fatigue, increased sensitivity to cold, dry skin, depression, and many more. All of which I fit into. Plus, my mother has it, and research has shown it to be genetic.
More information https://www.mayoclinic.org/diseases-conditions/hypothyroidism/symptoms-causes/syc-20350284

For those of you wondering about Hyperthyroidism, it is when your thyroid is OVER active and is shown when your TSH numbers are 5 or above. Usual symptoms include losing weight, rapid heartbeat, increased appetite, anxiety, sweating, and more.
More information: https://www.mayoclinic.org/diseases-conditions/hyperthyroidism/symptoms-causes/syc-20373659#:~:text=Overview,a%20rapid%20or%20irregular%20heartbeat.

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Looking at my numbers and how they go from nearly under-active to nearly overactive, it was my main reasoning for thinking that my hormones might be to blame. During my research, thyroid levels can fluctuate that much during seasons, what you had to eat that day and many other factors. I took those all into consideration, but all 3 years were fasting tests and were done all around the same time of year, summer. It is possible that my stress levels could’ve caused the fluctuation of the numbers, which is why I wanted to look into it further. However, because I am between 1-5 on the TSH level, it was not a concern of the doctor.

I’ve considered the possibility of other thyroid conditions like Hashimoto’s disease or Cushing syndrome. Both have symptoms that show like hypothyroidism, but can be more complex and serious. Hashimoto’s was the more likely out of the two because it would cause my thyroid levels to yo-yo as they have been along with many other problems I have been having such as fatigue, dry skin, brittle nails, weight gain, depression, etc. The difference between Hashimoto’s and hypothyroidism is in Hashimoto’s that it is considered an autoimmune disorder. It is where the immune system attacks the thyroid, causing the thyroid to act up. It also causes inflammation in parts of the body (joints, muscles, etc) that I may not be noticing.
More information on Hashimoto’s: https://www.mayoclinic.org/diseases-conditions/hashimotos-disease/symptoms-causes/syc-20351855

It is extremely unlikely after my research that I have Cushing because Cushing usually includes a lump on the throat (goiter), stretch marks from quick weight gain, etc. But I am not completely ruling it out because the symptoms also include: slow healing of cuts, acne, weight gain in midsection and face, decreased libido, along with many other symptoms of hypothyroidism.
More information on Cushing syndrome: https://www.mayoclinic.org/diseases-conditions/cushing-syndrome/symptoms-causes/syc-20351310

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The upside is even if it turns out to be my thyroid, it can be treated with prescribed medication and can be controlled somewhat easily. The downside is because my thyroid is “within normal range” it is hard to get a doctor to do further testing.

I may update this page from time to time with other information I find, or additional testing that is done to rule these out. Additional testing that I might do is inflammation and hormone blood tests. If it is Hashimoto’s, the inflammation testing should come back positive. Additional hormone testing might be needed to rule all thyroid conditions or narrow down the search.

**I am not a medical professional, so I can not diagnose or treat conditions. Please have all treatments, concerns, and tests run by a medical professional. This information is only to inform others and myself of the differences between each condition and what I am personally thinking.

Fifth: This leads us to now…

Last week – June 2020 – I went back to my PCP for my annual blood work and to stomp my foot and cry to get this fixed. I want my life back. I want to have the energy to walk the dog, do the dishes, sew, even to do laundry!

Photo by Dev Asangbam on Unsplash


They took my blood, did the standard workup. My PCP sometimes gets caught up with patients so sometimes he takes a while to get to people. I never minded because I could hear how he was laughing with the kid in the next room and that is what made me think he is such a great doctor. After the nurse/medical assistant did their thing, I laid down on the table for who knows how much time while waiting for the doctor. I was extremely close to falling asleep when he entered the room.


He was nice and brought up COVID, asked how I was dealing with it, etc. I mentioned that I was still out of work, but managing other than that. I was doing side jobs and making masks for friends and family to stay busy. Then I brought up how extreme my fatigue has been. I mentioned that I could easily sleep 20+ hours a day. I would literally fall asleep on my sewing machine, at my desk, at the grocery store… apparently, the last example got his attention.


He asked, “20 hours a day? That can’t be right.” I explained in further detail how I struggled to keep my eyes open while standing and doing the dishes, or waiting for the cashier at the store, or some points even while driving. No matter how much caffeine I take and even with my new med – Amphetamine salts – I would still sleep the entire day. I explained that I would drink an energy drink, take my med, and then take a nap without any issues. I told him I almost fell asleep here and now.


We talked for a bit, he seemed baffled by my fatigue/sleepiness. At this point, he actually asked me what I thought it might be because sometimes people try to figure it out on their own. I explained that I thought the most likely culprit that I came across so far that explains everything is Hypersomnia or some form of narcolepsy. My PCP also suggested it might be Sleep Apnea, but again, I dismissed it immediately because I don’t snore, struggle to breathe, wake up throughout the night, etc.


My PCP stated that hypersomnia was a “description”, not a diagnosis. Which, I knew, with all of the medical journals I had been reading and the classes that I took. However, I also don’t fit into the narcolepsy criteria because I don’t just suddenly fall asleep due to a trigger.


I brought up that maybe it was a problem with my hormones, or my hormones are listed as “normal” on the chart but may not be “normal” for me. In my research, I found that this could also be a very real thing and all it would really take is some extra blood tests. My PCP just nodded and “hmmm” ed.

He stated he would take a look at my bloodwork when it came back and if everything comes back fine, he would refer me to a sleep clinic. I thought as I was leaving the office, “at least we are finally exploring other options. Hopefully, my bloodwork will give SOME kind of indication.” A few days later, I got an email with my blood results that just said “good”. I followed up with a respectful response similar to, “So, what does this mean? What are the next steps for my fatigue?” A week later and still have not received a response.


Earlier this week I had my annual exam with my OBGYN whom I have been seeing since I was 16. I thought at least maybe she could rule out or test the hormone issues or tell me if my birth control or something might be a clue. I used the same description as I did with my PCP since that seemed to work with him, to describe my problem with my OB. She seemed just as baffled. She seemed equally surprised. To drive my point home, and because I was so desperate for any doctor to take me seriously, mid-exam I explained that I could easily fall asleep right here, right now. She looked at me with both eyebrows raised and she said, “Really? Noooo….” I nodded enthusiastically. At that point, she really heard me.


We started bouncing ideas off of each other, but she stated that it wasn’t her area of expertise and she really didn’t have a clue. I asked about my birth control, my hormones if anything like that could cause it and she said very unlikely and she had never seen anything like that before. But, she understood my struggle and gave me a referral for additional tests.

Her thoughts were similar to mine: an autoimmune disorder like lupus? Hormone levels? She seemed slightly surprised that I haven’t had tests like that run yet. So she gave me a list of tests and basically and open referral for me to go anywhere possible to get them done (insurance depending). I left that office feeling slightly more optimistic because I actually had a referral for tests in hand and SOMEONE was doing SOMETHING.

Fourth: Change of Scene Brings Hope?

In January 2020, we successfully moved. I picked an apartment that carried the least amount of stressors (2nd floor, easy parking, no lawn care, enough space for us to not drive each other crazy, etc) and had a lot of natural light. For the first few months, we barely had to turn on heat and lights during the day because there was so much natural light. I thought that maybe one of the major contributing factors to my depression was not enough natural sunlight due to my previous living area.

Photo by Raphael Renter on Unsplash

I am pleased to say my depression has gotten much better since the move is over and a lot of the stressors are being handled or have disappeared. I actually want to do the things I love again – but now I am frustrated because I WANT to do things, but I spend all of my energy trying to stay awake. Usually, I do paint by numbers which really helps with my anxiety. Now, I have to worry about falling asleep on the canvas. I usually do some sewing and make a wide variety of things. Now, I worry about accidentally sewing my finger through because I closed my eyes.

Around March 2020 I went to see a psychiatrist. I didn’t feel as though my PCP was taking my concerns seriously, and I wanted to see if I was taking the right meds or if my meds could possibly be the cause of everything. We had a good first meeting, and I felt like he was actually taking my concerns seriously. He took a look at the meds I was taking, decided the meds I was on worked for me, and shouldn’t be adjusted. He was concerned that I might have sleep apnea but since I am extremely familiar with sleep apnea I immediately dismissed it with listing the diagnostic criteria and how I don’t fit. He suggested I start taking Buproprion HCL XL to increase my energy.

The side effects were horrible. For the first month of the med, I had constant headaches along with a mess of other issues. Including but not limited to dizziness, lightheadedness, blood sugar dropping, and leg tremors. I routinely checked in with my psychiatrist, following up with him regarding my fatigue and the side effects. My energy slightly started to come back, so I stuck it out. After the third month of being on the Buproprion, my energy levels dropped again. I was the same level of tired, but with all of the side effects. I called my psychiatrist back, explained that it wasn’t helping at all, and he suggested I stop taking it. 

He was actually surprised and sounded annoyed that it didn’t work and is completely baffled by my brain chemistry and why things aren’t working – which makes me oddly happy because I’m now not the only one frustrated.

Next in May 2020 he prescribed Amphetamine Salts (Adderall) which I take twice a day. I expected an increase in energy, which still has not happened. Thankfully, no side effects have appeared yet and all of my Buproprion side effects have faded.

My psychiatrist keeps suggesting I go to therapy to help. I’m assuming because he eventually wants me off all medications. I keep telling him that the only therapist I would consider going back to was the last one that I saw. However, she is outside of my network and since I am without a job, financially it is not possible.

February 2020 the COVID-19/carona virus started to come to the US, so I spent my time researching the medicine behind it, watching and tracking the spread. My anxiety increased over the first few months because I was worried about the health of my high-risk friends and family. I soon stumbled across this article which gave the idea to start working on masks for my friends, family, and possibly donating them to healthcare workers.

I spent some time working on making masks, made a slight amount of cash because I had a small supply when the states started requiring them. I received an order of 100 for a company and made a decent amount from the sale which helped reduce the financial stress a bit. It gave me a sense of normalcy which I desperately needed at the time but didn’t help for a moment with my fatigue. If anything it made it worse.

Next on Finding my Diagnosis: This brings us to now…