*Jenna's Healthful Journey through Hypersomnia, EDS, and POTS*

0:56 maybe we can start if you could tell us a little bit about yourself sure all right my name is jenna clark
1:02 i’m 34 years old i work as an applied behavioral scientist at the center for advanced hindsight at
1:08 duke university so this basically means my training is in uh social psychology
1:13 and i use what i know about the real forces behind human behavior to help people make healthier choices in their
1:19 day-to-day lives so this is a project that’s very resonant for me given that that’s actually what i do
1:24 in my day job as well on this sort of health and illness front
1:31 i’m diagnosed with idiopathic hypersomnia without long sleep time
1:36 and several other things as well but that was the first and probably the most important diagnosis
1:41 on the sort of hobbies and the personal interest side i love reading and writing i’m very much into hikes although health
1:49 limits the kind of act level of activity i can get up to and also newly interested in birding
1:54 which thankfully is something you don’t have to walk very far to see some beautiful birds uh where i live
2:00 actually in the research triangle here in north carolina that’s a quick introduction and no thank you and that was very very
2:07 great and you know um birding is a great activity for these times uh specifically with covid-19 so

Early Signs of Excessive Sleepiness

2:14 wonderful and so um when did you first uh think or experience um
2:20 you know any anything or suspect that anything was wrong well it’s interesting because when i
2:27 look back now um from my current perspective i can see that i’ve been sick my entire life and it just was
2:34 something that i never realized as a child a few years back my husband told me a quote i can’t remember who said it but
2:40 it’s something along the lines of i learned as a child uh not to never to trust in my body
2:46 um something like that that was uh as soon as i heard that quote i was just a little angry that i hadn’t come up with
2:51 it myself because it just so perfectly encapsulated uh everything i felt um
2:56 like from a very young age i was always very very sort of tired weak uncoordinated
3:03 i couldn’t write properly or tie my shoes for a long time despite the fact i was academically advanced i was reading at
3:09 three but i couldn’t write properly until i was eight or nine until
3:14 until then i held my pencil like this so there are all of these little signs but they never really seem to be enough
3:22 to add up to anything especially as my mother actually has a similar condition to mine and she is
3:29 significantly sicker she is in fact more or less disabled and so it was one of those things where i could contrast
3:34 my minor issues and impairments to something you know more serious like her condition
3:40 and it just kind of came across like okay you’re making a big deal out of but there nothing there were always
3:46 signs um you know like i in high school i would sleep through my us history class
3:52 every day because the teacher would turn down the lights turn up the heat uh and start teaching on transparencies uh which
3:58 hopefully you don’t have too many people on this watching this will be too young to know what they are
4:04 but i would just follow i remember them yeah just fall asleep like clockwork in that class every day um
4:10 and if you left me like alone in a car from 10 minutes i’d fall asleep all of these kind of things and i just kind of assumed this was normal
4:24 because i was a teenager so i was sleeping maybe seven hours a night and i thought oh well you’re supposed to
4:29 sleep eight hours a night if i only sleep seven no wonder i can fall asleep at the drop of a hat uh
4:36 it took a it took quite a few years for me to realize that something was genuinely up

When Fatigue Began Affecting Daily Life

4:42 i actually i got through college um doing fairly well um i didn’t study very
4:48 much but i tended to get by without needing too much studying in my life so i didn’t really realize anything was wrong
4:54 but then i started working uh sort of a normal eight to five schedule and things were really really difficult
5:01 at that point i would set my alarm at 7 45 every morning wake up brush my teeth brush my hair
5:07 throw on clothes and race for like the one mile a drive to get to work i would just i couldn’t set
5:12 it any earlier because i had to get as much sleep as possible um i decided to go see a sleep
5:18 specialist and i was so sleepy i forgot about the appointment and i missed it uh
5:24 and so i’m gonna go with that that was actually back in 2010 uh back in 2010 uh
5:32 and i missed the appointment and then i realized i was about to go off to graduate school at that point
5:38 so i realized i can’t make another appointment i’m out of time i’m just going to have to live with this so i went to graduate school and got all
5:45 the way through a master’s and phd and i don’t know if you’ve been to graduate school but the thing about grad
5:51 school is everyone’s exhausted in grad school it’s like the definition of the experience so when you see everyone else
5:57 around you talking about how tired they are it just seems natural to assume that you you know you the fact that you’re so
6:03 tired is nothing special um but uh after a few years i just it was just
6:10 insupportable the amount of exhaustion i felt uh i would be sitting on the couch 7 p.m at
6:16 night all the lights on in the room my husband playing a video game and talking loudly uh over his headphones uh to someone on
6:23 the other end and i would just fall asleep it i just could just tell that this could not pop so i scheduled uh

Idiopathic Hypersomnia Diagnosis

6:28 well i talked to uh my student health actually and they finally referred me to a sleep clinic
6:36 at which point i talked to the doctor they had me do a sleep form some surveys it became pretty
6:41 clear that i was extremely unusually sleepy but i still had to go through three sleep studies before they settled on the
6:48 idiopathic hypersomnia diagnosis and that
6:59 was in ironically it was in 2017 uh i got the diagnosis the day after i
7:05 defended my dissertation and completed my phd oh wow congratulations
7:10 thanks it was and you managed to do that all with um with um the condition i did
7:17 but um it’s certainly a case of you know uh my friends my colleagues were working 60 hour weeks things like that i was
7:24 working 20 hour weeks so because i was just so tired so i was uh
7:29 i was satisfying the bear requirements i was getting things done but i was not getting nearly as much done as i could
7:35 have and so i you know i got the phd and i graduated but i certainly left grad school with a sort of
7:40 weaker background with fewer achievements than people who hadn’t been struggling against this so it’s
7:46 a little bittersweet knowing that if i’d not missed that first appointment all the way back in 2010 i probably
7:52 would have had a much much easier time 

Living with Idiopathic Hypersomnia

7:58 those six years of graduate school were extremely extremely hard on me could you um describe your sort of worst day with with um hypersomnia what
8:05 was what is the typical day like nowadays i’m in a pretty good place uh because i
8:10 have i have a very regular sleep schedule um and i take several medications but i would say
8:17 before everything um if i could sleep about eight to nine hours most days i would be
8:24 all right i would be constantly aware of my sleepiness i might yawn every 10 minutes or so it would just be
8:32 you know gritty feeling in my eyes and just a sense that everything was sort of an uphill struggle but i could
8:38 generally do what i needed to do and hopefully i wouldn’t nap that’s the good day
8:44 uh a bad day would be if for some reason i got uh less than eight hours of sleep uh
8:49 anytime i had an early morning meeting i would typically get maybe seven hours of sleep because i found it difficult i had such a regular
8:56 schedule in many cases i found it difficult to go to bed earlier so if i got seven hours of sleep or so i
9:01 would just i would be yawning constantly i’ve offended more than one person uh
9:06 with you know yawning constantly as they’re talking to me um my eyelids would be drooping sometimes i
9:12 would have to just hold my head up like this because i would just be constantly doing the little maps um and
9:19 oftentimes i would have to actually nap in the afternoon or i’d get seized by one of those sleep attacks like i
9:24 described earlier where you know noise sound time of day didn’t matter i would just have
9:29 to lay down and be out for maybe half an hour and you know while you’re experiencing
9:35 these symptoms were you managing through with caffeine at all i tried but it turns out that caffeine has
9:41 just never really had much of an effect on me i don’t know if it’s related to any of my diagnoses or if it just happens to be
9:47 a sort of cruel trick of nature um but it seems to be that if i’ve legitimately not slept enough hours
9:54 caffeine provides a very slight boost but if i have and this is the thing that would always confuse me is i can often
9:59 sleep eight hours nine hours feel the same way if i’ve slept eight or nine hours then caffeine doesn’t really seem to have an
10:04 effect at all i had to teach at 8 a.m monday wednesday friday one semester in in graduate school and that was
10:11 probably the hardest thing i’ve ever had to do yeah 

What Chronic Sleepiness Feels Like

10:17 and you know with with the uh sleepiness or tiredness how would you characterize the the feeling that you had
10:24 i would say that it’s a little difficult to answer because i feel that sleepiness is a little bit like pain in that it can manifest in a
10:31 lot of different ways this sort of the low level grinding tiredness which i feel like you feel kind of in your
10:37 eyes almost just the heaviness the constant desire for them to close is the sort of full body tiredness where
10:44 just moving seems like so much effort you could keep your eyes open and even maybe focus on things but all you can do is sit
10:51 um and then of course there’s the acute sleepiness uh this is one thing that actually still happens to me now and
10:56 again even though i’m generally coping quite well now is i will just uh often after i’ve been standing for a
11:02 long time i will just feel this absolute just pull towards sleep it’s almost like a you know a
11:08 tidal pull out in the ocean somewhere where i just i have to sit down and i have to close my eyes and i have
11:14 to just shut down but i think probably the most common thing is just the sort of like
11:20 constant slow uh slow drag of everything um the way that it’s just like sleep is
11:27 just slowly reaching out for you and you have to constantly exert yourself like you’re tensing a muscle the whole day long just
11:34 to really stay awake and focused and in the moment 

Brain Fog, Memory, and Concentration

11:40 got it got it and so um have you noticed any challenges with cognition or memory or any issues of that nature
11:46 yeah so thankfully again this is another thing that medication has helped a great
11:51 deal with but i have had a lot of brain fog and i’ll still see this on days where i don’t sleep well where i just cannot
11:57 remember our words uh and i mean words are kind of my thing uh i very much i love to read i love to
12:05 write i have a very large vocabulary but there will be days where the simplest words just escape me
12:10 and i just have to sort of keep stammering out things till eventually i get there memory is a particular issue as well i
12:17 have there’s a lot of things that are just kind of gone and they say you know in cognitive
12:23 psychology they say that memory is the ghost of attention so whatever you’re able to focus on in the
12:28 moment is what you’ll be able to remember but if you’re so foggy and tired you can’t focus on anything then of course you just kind of lose all
12:35 of these memories so it’s definitely something that i i really regret because it’s
12:40 large periods of my life that are just kind of foggy in that way

Managing Symptoms at Work

12:53 and and um has it impacted your your work at all i know you mentioned in
12:58 graduate school but uh you know it mentioned difficulty getting to work i guess in the time of covid
13:04 it’s easier to get to work but uh could you talk a little bit about that yeah so i’m incredibly lucky to work for
13:11 just a very generous and flexible employer um because there are days less less now
13:17 um certainly not at all now that we’re in the copic stage but less now that i’m properly medicated there have been days
13:23 where i’ve just had to go home in the middle of the day which is like i’m sorry i i have to sleep i would just go home
13:29 at 2 and go right to bed and sleep for a couple hours and hopefully manage to make up some of the work afterwards but
13:35 in many cases often just sort of losing the day so i’m very grateful to the flexibility
13:40 that my employer allows in terms of getting my work done it’s certainly provided issues there
13:47 also the issues with of course like memory and focus i have a pretty robust uh
13:52 to-do list tracking system because i have to it’s just so easy for you know things to slip out
13:58 of my mind if someone comes by my office and asks me to do something i often tell them i will do that but please send me an email
14:04 or send me a message on slack because i’m just not going to remember what you told me verbally i needed writing
14:10 so there’s a lot of these kind of small accommodations i’ve had to make to get around it but for the most part i’ve
14:17 been extraordinarily lucky and having enough support to make those accommodations
14:22 yeah i do the same thing i asked my wife to send me emails and things like that 

The Emotional Impact on Relationships

14:29 um so could you could you tell me a little bit about um any impacts to to mood um and maybe to your relationships
14:35 yeah definitely this is actually it’s subtle but i say it’s perhaps the
14:40 thing i’m most grateful for in terms of being a properly medicated is that when i was at my worst i was so
14:47 irritable and i hated this about myself but it was just um anything that was sort of negative or
14:54 unpleasant just felt intolerable
15:05 i would remember on days that i couldn’t sleep well i have a very affectionate cat who’s very very fluffy and sweet and he
15:11 loves to come up and rub on my legs in the morning but i can remember mornings where i was so exhausted that just
15:17 the sensation of him rubbing against my legs it felt like sandpaper despite the fact he’s you know soft as
15:23 silk and i would just be crying because i was trying to get the cat off me when it’s just such a sweet innocent
15:30 little gesture that most days i would enjoy and i could sometimes unfortunately be
15:35 short-tempered with my husband as well because it’s just you know it feels like you’re carrying such a burden that slightest thing
15:42 put on top of that is an intolerable imposition i remember once he turned on
15:47 the air conditioning in a super hot car and it blasted you know full force in my
15:53 face and i think i i yelled at him for it it’s like why would you do that i mean of course you know it’s just a
15:58 simple mistake you don’t think to turn it down before you turn it on uh but in the moment it just felt like he slapped me
16:04 in the face because i had so little ability to deal with anything
16:09 my husband is a very wonderful and patient person and never made me feel bad about any of that
16:14 but i’m very glad that i have that i’m better able to deal with setbacks now because i think it really was a huge
16:21 impact on my mood and relationships 

How Hypersomnia Limited Everyday Activities

16:27 and um could you describe your impact or the impact on perhaps day-to-day activity things that you would have wanted to do that
16:32 you couldn’t do because of the illness yeah
16:37 that’s an interesting one so for me not having the long sleep time i had as many hours as most people do in
16:45 a day for the most part so i certainly didn’t have as much impact as people with hypersomnia who were sleeping 12
16:51 14 16 hours a day but i would say probably the biggest thing was that i just didn’t have energy for many
hobbies at all
17:06 and for trying new things i think was the biggest issue so at the time i did a lot of online gaming because this is
17:11 something i could do in almost any state of exhaustion i could just sit down get on my computer and game for
17:17 hours regardless of the state i was in and i think it was it was somewhat it was probably pretty unhealthy for me
17:24 um and it really displaced time i could have been spending doing things that are more interesting and important to me
17:30 i like to sew i mentioned writing i like to draw i have all of these more creative interests and impulses
17:36 that i really didn’t indulge much during that time because it was just those things really do require so much
17:41 energy and focus to get going and so much easier to just sit there and plunk away on my computer instead
17:47 so well i could certainly you know on the surface live a fairly normal life uh i think a
17:53 lot of it you know a lot of things were stripped out of it very in this subtle way i used to say
18:00 that i had a 30 life and when i got fixed it went to 100 so i i know the feeling for sure

Sleep Studies and Diagnostic Challenges

18:07 um so so you mentioned um 2010 you you scheduled a sleep study or at least a
18:13 meeting with a sleep specialist uh six years later you finally got three sleep studies
18:19 um talk to us about the the sleep studies themselves why did it take three how long did that take and that
18:26 entire process with with your physicians and did you see more than one physician yeah so i should note that um i did go
18:33 see student health a couple times in the years between uh 2010 and 2016. i had fantastic insurance in 2010
18:40 because i was working for the state of florida i had terrible insurance in graduate school because graduate students have terrible
18:46 insurance so i pretty much could only go to student health and i approached them a few times about
18:51 this general feeling of exhaustion and weakness and low energy and they did my blood work said well
18:56 everything looks fine uh when uh one of the student nurses tried to insist that i was depressed
19:03 i was not depressed and of course being in graduate school for psychology i was able to make a very strong case against
19:09 that but it kind of you know struck me that somebody who didn’t necessarily know as much about
19:14 depression and wasn’t as comfortable comfortable advocating for themselves could absolutely gotten slapped with that label and
19:20 everything ended right there that i was told i was dehydrated uh i drank
19:25 something like 80 ounces of water a day for weeks and nothing changed and finally i was
19:31 like i’ve tried all of these things none of them work uh i think maybe it’s my sleep uh and so uh they referred me to a a
19:39 sleep uh doctor and um that process was fairly straightforward they had me
19:45 you know fill out a sleep diary of how much i was sleeping um they had me try melatonin to get to
19:50 sleep uh easier which actually did help with that didn’t do anything for the other symptoms the first sleep study was the
19:57 simple overnight sleep study the the psg that they do to see if you have sleep apnea or any other explanation for your
20:03 tiredness first and i certainly didn’t i had no sleep apnea anything else going on for all
20:08 attention purposes it looked like a solid eight hours of normal sleep they said okay we’ll call you in and do
20:14 the uh the multiple sleep latencies test uh uh as well and that’s you know they put you through the
20:20 psg the overnight sleep study and then the next day they they set you down in a room and
20:26 every two hours they give you about half an hour to try and take a nap uh they just say okay we’re gonna leave
20:33 you here we’re gonna lay down in bed turn out the lights sleep if you can um i certainly could i slept every one
20:41 of those naps through i fell asleep very quickly and i slept very very well
20:46 but the important thing about the um multiple sleep latencies test is that they use it to discriminate between
20:52 narcolepsy and idiopathic hypersomnia i’m sure you knew all this but uh for idiopathic for narcolepsy uh the
20:59 distinguishing features that you have rem intrusion is that you’re dreaming when you shouldn’t be dreaming which certainly i have experienced uh
21:07 just you know in a sort of subjective phenomenological sense i’m sure that i dream at weird times right when i fall
21:12 asleep uh but the test was inconclusive you have to have two uh experiences of brem intrusion to
21:18 count as a narcolepsy diagnosis i had one for sure and then the second one the text said
21:24 that i didn’t and the doctor said that i did and they couldn’t agree on how to read the results so they said okay fine
21:30 we’re just going to give you another sleep study and in that other sleep study i again slept immediately slept through all of
21:36 the naps but i had no rem intrusion so they decided to give me the idiopathic hypersomnia diagnosis
21:43 which was also strange because most people with ih tend to sleep for 10 plus hours a night and i don’t i
21:50 sleep slightly more than your average person nine hours seems to be about my sweet spot but
21:55 generally i sleep uh with normal sleep time which is very unusual for idiopathic hyperthymia but it seemed to
22:02 fit my symptoms and there was there was no denying that i could just fall asleep at the drop of a hat i was extremely tired so that’s how
22:09 the doctor decided to treat me 

Starting Treatment and Managing Medication

22:15 okay wonderful and so when the the diagnosis was finally made um when when was that and what did the doctor um recommend so that was april 11 2017
22:24 which as i said i remember because it was the day after my dissertation um so we started with
22:31 uh oh there were some obvious lifestyle change recommendations about keeping a very uh
22:36 careful schedule adhering to really good sleep hygiene always sleeping in a dark cool room uh not staying in bed when
22:43 you’re not sleeping sort of those commonplace things but for the most part i was already doing all of that so the main thing that we started with
22:49 was a instant release ritalin i believe i started with something like 20
22:54 milligrams that you take twice a day so i was on the instant release for a while and it helped
23:01 quite a bit but it also made me a little jittery a little nauseated and there was a very clear pattern of i would be
23:07 pretty okay in the start of the day and then i would absolutely crash in the evenings the evenings might have been worse
23:12 uh than even before and you tried different prescriptions uh played around with this a little then
23:19 of course i uh so i graduated and i switched over to my new insurance working for duke
23:26 university um and so i actually didn’t have a specialist at that point sleep specialist anymore
23:32 because my old sleep specialist wasn’t in network through duke so i thought okay it’s fine i’m just kind of managing
23:38 this i’m taking a standard prescription i’ll just ask my my primary care physician to do it but
23:44 it turns out that my primary care physician was very uncomfortable with prescribing
23:49 this controlled medication i had to get a new prescription every 15 days
23:55 not just every month which is apparently i think legally required but every 15 days and i would have to drive down physically
24:00 collect the prescription in paper form and then take it to the pharmacy it was kind of a nightmare
24:06 um and on top of all of that after a little while the dose just
24:11 didn’t seem to be working so i told my primary care physician and asked if we could consider upping the
24:16 dosage and she said sure but we need to blood test you that okay so she tested my blood and
24:23 then she came back and told me actually we don’t see any sign that you’re taking your medication in your
24:29 bloodstream so i will no longer be willing to prescribe this medication to you and i was shocked and horrified because
24:35 i had been taking my medication every single day like clockwork so i didn’t know
24:40 what was going on and as much as i had some issues with the medication it’s certainly better than nothing
24:45 so i did a little research and it turns out that what she had done was she had run an amphetamine scan on my blood and
24:54 ritalin methylphenidate is not an amphetamine it will not be shown it will not show up in an amphetamine test
25:01 so i was able to i brought those results to her and was able to show her that look you didn’t test me for the right
25:07 thing that’s why it came up negative and she was apologetic and
25:12 quickly gave me my prescription uh but then i immediately went out and sought out a
25:17 proper uh neurologist at through duke neurology because i was so i was extremely unwilling to have that
25:24 experience again i didn’t like the implication that i had been selling my meds
25:30 and of course being tested for the absolute wrong thing it bothers me because you know who knows
25:35 how many other people might have ended up in a similar position with this doctor or with this practice i tried to i tried to report it but of
25:42 course you know i think the reports have disappeared into the void um and that’s that’s something that’s actually come up many times for me i
25:48 think it’s just the incredible privilege that i have being you know someone who’s educated
25:54 someone who’s confident about these kind of topics honestly being someone who’s white i have a lot of privileges in dealing with
26:00 doctors that have made this journey so much easier for me than it might have been otherwise
26:06 there’s multiple stopping places where somebody without those privileges might have just had to live without
26:11 treatment so i’m very very grateful sounds like the wrong word but

Finding Stability Through Treatment and Routine

26:26 so uh welcome back and uh maybe you take it away from from how you’re doing today yeah so i’m
26:33 doing pretty well nowadays uh what’s really helpful is that i have a lot of different specialists that i work with
26:39 for a while i tried to just have my sleep issues treated by sort of a general physician that just didn’t work out very well so now i have
26:46 a neurology specialist for everything related to sleep i have a cardiology specialist for some other issues i see a
26:52 physical therapist on occasion so i have a really good care team that’s all kind of
26:58 coordinated or at least beats back to my pcp my primary care doctor so all of
27:04 that is working very well i’d say most of the time i keep things
27:10 pretty well under control by giving myself a really steady schedule early to bed most of the
27:16 time i’ve been a little off this week because with the break my sleep schedule got a little off pattern and it’s just it’s so
27:22 obvious when i let myself stay up just a little late uh i’ll feel it for at least a whole week
27:28 so keeping a really rigorous schedule setting an alarm most days and even when i even on the weekends
27:34 trying not to sleep in even if i don’t necessarily set the alarm things like that are working well for me
27:40 i try to stay active i try to do uh my light uh physical therapy exercises a few times a week
27:46 try and get getting a few walks with a longer walk on the weekend i take uh some stimulants i take
27:53 extended release uh methylphenidate i take that in the morning and i also take modafinil
27:59 sometimes with an extra dose of modafinil at lunch if it’s a particularly rough day and some other medications for my other
28:05 issues and it’s a pretty stable it’s pretty stable pattern i’d say you know things aren’t perfect but i’m
28:12 generally able to live a pretty normal life i work at 40 hours a week job i’m able to cook do
28:18 chores around the house sometimes i have certainly there are bad days where i don’t have a lot of energy
28:23 i need to take a little more sick time but for the most part managing very well and so much better
28:29 than i was even like just five years ago so that’s a that’s a hopeful story i i hope for a
28:36 lot of people um because it’s just it’s really been night and day

The Importance of Specialist Care

28:43 sure and and well and congratulations as well on on you know getting to the place you are now so so you mentioned that five years ago it was sort of uh

28:49 in a worse place talk to us about that journey um from five years ago uh you know it
28:55 sounds like you were speaking with your general practitioner and that didn’t quite help you get to where you needed to be um
29:01 what what was the breakthrough set of moments for you well the most important thing was the
29:07 initial sleep studies that i had that got me on the extended release ritalin that was well
29:12 actually i was originally on the instant release ritalin which just didn’t work uh very well and i took that for a while uh
29:18 so really what happened in the care journey there was going from uh my original sleep doctor who uh i just
29:25 then maintained the prescriptions that original sleep doctor gave me through my primary care doctor
29:30 so really the biggest improvement there was actually going to see my neurologist someone who had who was genuinely a
29:37 specialist in these kind of things and did have experience treating sleep patients but generally thinking about
29:43 these issues as a neurological issue instead of just a sleep issue really
29:48 helped me find someone who had a lot of expertise and in this case it was great because my
29:53 primary care doctor had been very reluctant to prescribe my medications i think last
29:58 time i mentioned the whole issue with denying the prescription and certainly she didn’t want to really change around anything
30:05 whereas when i spoke to the specialist he was just so fantastically uh understanding he talked about how he
30:12 didn’t like all the restrictions that the state necessarily put on prescribing stimulants because as he said you know
30:18 this is the drug that treats the condition that you have there’s absolutely no reason you shouldn’t have access to it
30:25 so that was the number one largest thing was getting that step but then

Discovering POTS and Ehlers-Danlos Syndrome

30:31 about a year after that i started noticing i was having a lot of other problems that weren’t necessarily explicable or related to
30:37 sleep a lot of pain weakness stiffness digestive problems and the like and that led me to going to my primary
30:44 care doctor and starting the process of getting diagnosed with elos donlo
30:49 syndrome which is probably the actual cause of my exhaustion
30:55 it’s probably related to the fact that i have something called potts postural orthopedic tachycardia syndrome
31:03 i think i got that right which basically means that when i when i’m standing my heart rate it
31:08 gets extremely high basically my autonomic system is all out of whack and my body doesn’t really adjust very well
31:14 to changes um and so likely this sort of like constant heartbeat is probably
31:20 at least somewhat uh the reason why i’m so tired all the time but even with
31:25 medication for pots and the like i still do have a lot of exhaustion and still need to take the ritalin so
31:31 it’s very possible i do in fact have a whole laundry list of conditions which i think is
31:36 sadly pretty common for people who struggle with idiopathic hypersobia or narcolepsy is that there’s usually
31:42 something else going on as well sure and and uh how did you figure out
31:47 that you had this uh the the rapid heart rate and when you stat stood
31:53 well it actually um started i’m trying to remember which came first
31:58 the eds uh suspicion or the the pot suspicion i think it was actually the pot suspicion
32:04 that came first um because i’ve had these other symptoms my whole life where uh if i stand up too fast i get dizzy i
32:11 i find it very difficult to stand for long periods of time it’s just strangely exhausting and the like um
32:19 you know it’s an interesting question i think actually a co-worker mentioned to me that she had been diagnosed with pots
32:26 thinking back on it now and how she was just tired all the time um and i’ve long since felt so
32:32 idiopathic personally literally means you sleep all the time and we don’t know why that’s the definition of idiopathic and
32:39 i’ve always thought that it was it’s likely that there’s something else behind this hypersomnia there’s something causing it
32:45 so i think i was always a little bit on the lookout for other explanations so when i heard about pots and looked
32:51 into it and the main symptoms of it being you know that standing up you often tend to feel this
32:56 dizziness and you may faint and i’ve nearly fainted several times in the past just standing up too quickly
33:01 felt like a fairly likely thing to look into and then from there i looked into the
33:06 causes of pots and a very very common cause of pots is having uh
33:12 hypermobile ehlers-danlos syndrome which also then explains sort of everything else that the pots didn’t explain so it
33:18 seemed like a very likely diagnosis for me to take to my doctor and discuss which isn’t always a good
33:24 thing that i would recommend and people doing you have to obviously have a very open-minded doctor who doesn’t feel like
33:31 you know a lot of doctors very skeptical when you come in and say hey i googled my symptoms but in my case i
33:36 had a very good relationship with my doctor and i have of course sort of academic credentials that make it i think a lot
33:43 easier for me to be taken seriously so it’s not something i would recommend for everyone necessarily but it was
33:49 really really helpful for me and and so so congratulations on on
33:54 helping to figure things out on your own it sounds like there was some serendipity involved with meeting your co-worker
34:01 uh who described uh her experience and so that’s fantastic though that’s
34:06 exactly sort of the reason why we’re having this conversation as you share your experience it gives others a sense of you know
34:13 things that uh that they might experience themselves and and maybe provide some some thoughts and or and or things to
34:19 try uh with their clinicians and so so that’s that’s extremely helpful so

Finding the Right Medication and Dosage

34:26 you mentioned five years ago um you know it was in a worse place you got to to see a neurologist finally
34:32 who was was more open-minded and helped you along the journey a bit further uh one that you had a better way of
34:39 conversing with and was able to share and you were able to share more information about
34:44 what you were experiencing and they were open to it and then of course they prescribed you the right treatments
34:51 um which you are on now um and so if you could describe your experience
34:56 with the treatments were there things that were tried and dismissed tried and failed was there dose finding that had to occur
35:04 what was your experience with this yeah it’s interesting there was a lot of dose finding with the
35:10 um with the original instant release i very quickly i think i went up in doses once or twice
35:16  with just the sleep doctor and then needed to go up again a third time with the physician which triggered this
35:22 switch to the specialist i found that every time i would start a new dose i would feel jittery a little
35:27 sick to my stomach at first and then maybe there would be a period where that would all level out but then
35:33 it would just seem like it was getting less and less effective over the long run which is not an experience that i’ve had nearly as much with the
35:40 extended release it was interesting because i wasn’t sure i would be able to feel or recognize if a dose was right
35:45 for me i thought that that would be just one of those arbitrary questions like i would just ask the doctor and the doctor would know
35:51 what would be the right dose for me but it really does seem to be an extremely personalized pros uh process you hear a lot of people
35:58 say that modafinil is what worked for them um and uh everything else was terrible
36:03 or so on or so forth um but for me yeah once i got in this i think it’s 20 milligram
36:09 once daily extended release that seemed to be just about perfect i do i still do have some bad days so i
36:16 talked to my neurologist about something supplementary for especially bad days and
36:22 i tried armada nil first and it turns out that one armada nil will keep me up forever
36:29 but not do anything to make me feel any more awake i took one and i think i was awake for about the next 32 hours
36:35 but i was just completely out of it so that was obviously a failure of a medication and then i
36:42 tried regular modafinil not armor daffodil they’re almost exactly the same chemically but it’s completely different
36:48 the regular modafinil helps me a little bit but it has an incredibly subtle effect compared to the armadale so it really
36:55 does seem like whatever explains it whatever sort of bakeries of body chemistry
37:00 are going on there everybody probably does have to go through some process of trying something and
37:06 seeing what works and what fits uh i’ve always heard the idea that you become tolerant
37:11 to your stimulants and that you’ll always have to increase your dose or that you should take toleration tolerance breaks my neurologist told me
37:19 that this was generally not true and the experience i’ve had seems to more or less fit with that is that i
37:25 haven’t needed to take uh breaks but it’s such a commonly repeated story that i’m not really sure
37:31 which way that goes or not i think there’s a lot of myths and uh open questions around stimulants
37:37 and stimulant use sure and uh sorry i had to go and mute there for a second because of
37:43 some i guess someone’s mowing the lawn nearby but um so so 

Life Before and After Effective Treatment

37:50 so wow so there definitely was some some experience there um trying different therapies different doses of different therapies
37:56 until you finally found a solution that worked for you so that’s that’s great that you were able to go through that journey
38:01 um you know talk about you know your your life before and after sort of
38:07 the situation you were in and how has it changed um
38:13 yeah you know i feel like i was definitely sleepwalking a bit kind of just living life in a fog i was
38:20 going through i was sort of going through the motions but i was just really unable to focus so
38:26 much like it kind of felt like if i just made one mistake if i did one thing even the
38:32 slightest bit wrong i could just lose a day so you know sleep uh sleep seven and a half hours instead of eight
38:39 and i might be useless the entire day there was an awful lot of sitting even
38:44 if i could get up uh i would often be fairly okay in sort of the late uh
38:49 mornings would usually be the best time and i could get up i could do things i did have a summer where i went to the
38:55 gym more or less every day um even in in the worst of this but i was just
39:02 constantly always tired just constantly aware of carrying this huge weight around and uh no matter
39:09 what when the evening came i would just be completely exhausted and i just lost a lot of time
39:17 just so much time that wasn’t really used for anything productive personally or professionally
39:23 and just so much difficulty doing really simple tasks like i would sit on the couch and just
39:29 think about all of the things i needed to do and find it just so difficult to just get up and do them
39:36 and nowadays of course it’s not i don’t want to say that it’s perfect all of those things still happen but you know i usually manage to get up
39:44 i take care of myself i actually all throughout grad graduate school i had very short hair
39:51 because it was just too much effort to take care of my long hair i have quarantine
39:56 length hair right now but even so ever since i’ve i’ve been properly medicated i’ve had long hair again
40:01 because the sort of you know 15 20 minutes it takes to blow dry it used to just be an impossible thing to think
40:06 about and now it’s just a task that i can handle i i do really have to take care of myself i have to be mindful
40:14 of the ways that i spend my energy and the things that i do with my time but there’s just if it’s i guess you
40:20 could say that there was i was always on a time and energy budget but the size of that budget has gotten much larger and the amount that
40:28 individual tasks take has also gotten much smaller so i’m just far far more productive especially in
40:34 things that i think require really intense focused mental effort i have a lot less of the brain fog where i would just kind
40:40 of sit there and stare at nothing and just be unable to make my brain work a lot of that has passed which
40:46 is fantastic because i mean i make my livelihood off being able to think and write and speak
40:52 so having that return to me has been really important so i suppose that’s a bit of an unclear
40:58 answer uh but i because i mean in many ways i was doing okay before but it was just
41:04 so hard every day and now i’m doing better than okay and it’s much easier wonderful and and you know and and this
41:11 is um the hardest thing to do is empathy right is to put yourself in another person’s shoes
41:17 and and again the purpose of helpful stories is to to provide that opportunity um so congratulations it sounds like

Jenna’s Advice: Listen to Your Body

41:23 you’ve come a long way on your journey what advice do you have for folks who are dealing with
41:29 hypersomnia sleep issues um the other issues that you mentioned oh boy there’s a lot of things i could
41:36 say i think the number one thing would be to listen to your body um you can listen to all the the people
41:42 around you always saying things like oh everyone’s tired i’m so tired all the time and you can listen to that and
41:48 think that what you’re feeling is normal but if it doesn’t feel normal if it really feels to you like you can’t live
41:54 up to what everyone around you is doing and expecting believe yourself something probably is
41:59 wrong and it is worth checking into if i had believed myself sooner my life would look probably very different
42:06 um and related to that i would also say listen to your body’s cues in the moment um if you have a good day then maybe you
42:13 can do a little bit more if you have a bad day then maybe you should do a little bit less but don’t actually overdo it this is a
42:20 problem i’m still working uh around is when i have a really good day i want to just do everything and i’ll
42:25 tire myself out for the following week so just always you know it’s it’s a hard
42:30 lesson to learn but it’s a good lesson to learn that in some ways you probably do have limitations that you want to live within
42:37 um and yeah it probably is important for you to you know set an alarm most every day and go to bed early and all of these
42:43 things that may not feel very fun but in the end they’re very much worth it
42:50 and one other thing i would add is definitely if your diagnosis doesn’t feel right or
42:57 it doesn’t feel like it explains everything keep digging because that was certainly
43:02 what happened with me is just sleep was only a part of the issue and when i was feeling all of this pain
43:09 all of this nausea all of these other things i realized there was so much more going on it was treating those other
43:14 things it’s had just about as much of an impact on my life as as treating the sleep i’ve spent a
43:21 lot of time online forums for people who have a hyper insomnia and one of the reasons is that i very
43:27 often see them post things that suggest that they have similar issues to mind and they don’t recognize it
43:32 um a lot of people who say oh you know i’m diagnosed with this and this is the problem and then they’ll offhandedly
43:38 mention something else and then you ask a few questions about that and you hear all of these other things are going wrong
43:43 so really think about all of your symptoms and if you don’t feel satisfied in your
43:49 answer if you can if you have the resources if you have the opportunity try to keep looking
43:54 because it’s never too late when i got diagnosed with eds this also allowed my mom to get
44:00 diagnosed with eds at the age of 59 she has been sick her entire life and
44:06 more or less disabled for the last 10 or 20 years of her life um and she’s had heard a lot of answers
44:11 over the years things like fibromyalgia that you know might well be true but weren’t necessarily a good satisfying
44:17 explanations um but it’s it’s never too late to get that explanation and figure out what’s going on because there’s
44:23 almost always something that can be done if you just know what’s happening so yeah listen to your body do what it
44:30 says and just keep asking questions because there is always a way forward i think for
44:36 just about everybody wonderful wonderful and that is uh that is exactly what we want with
44:42 helpful stories is folks uh overcoming uh what’s going on and making sure that they have the
44:47 opportunity to share their journey with others and so i wanted to thank you so much for taking the time
44:53 both times actually um and so very much appreciate you sharing your journey
44:58 you know hopefully together we we have an impact on folks who who have issues that they they don’t
45:03 know how to grapple with they have questions about and they just need just that little bit of inspiration from a story like yours
45:10 uh to take their health into their own hands so jenna thank you so much and no i just wanted to
45:16 thank you for inviting me to participate in this i think what you’re doing is awesome i’m grateful for a chance to be involved
45:21 and honestly i spend all that time on reddit just looking for people to maybe help out a little uh so it’s
45:28 really nice to to be a part of this so thanks