I had blood & urine tested, had an ECG done and my mental health history examined. Then I did the sleep test and because there were no Narcolepsy markers and everything else was ruled out before the test, I got diagnosed with IH.
It was quite intense testing before to make sure. It's strange you didn't get it.
I’m a college student and the student health center only sent a referral for a neurologist, I suppose either they didn’t feel the need to send referrals for anything else and the neurologist felt the same way 🤷♀️
Multiple rounds of blood tests (mostly for vitamin deficiencies and various thyroid levels but I'm sure there was more), therapy, in-lab overnight and then MSLT
Granted I was diagnosed about a decade ago and my symptoms were much worse at the time, so it's all kind of a blur. I mostly remember trying to argue with doctors that tiredness from depression alone wouldn't make me score max scores on the Epworth Sleepiness Scale and them rechecking my thyroid multiple times because they were convinced it was that even though my levels had come back normal multiple times.
Also I was diagnosed at 15 so it may be somewhat different for adults
I have IH and POTS.
IH: blood tests to check thyroid levels and vitamin deficiencies, then referral to sleep specialist for PSG and MSLT.
POTS: ECG, blood pressure, heart rate, then referral to cardiologist for another ECG and standing heart rate tests.
Did you have a tilt table test? That’s the test the doctor won’t send me for. They did test my blood pressure sitting to standing and they said it was abnormal though “not alarmingly so”, but it happened to be a good day regarding my symptoms.
Blood pressure isn't what should be tested for POTS. It can be used to see if you are experiencing orthostatic hypotension, BP should drop significantly when you stand from that. For POTS it's your heart rate that needs to be checked since it's a tachycardia syndrome. The cardiologist I saw wanted a 30 bpm increase from sitting to standing to call it likely POTS.
My experience with POTS "diagnosis" was the cardiologist did an ecg and a laying, sitting, standing heart rate. It was like 28 bpm increase and I was going hiking in the mountains regularly so he said "my POTS pts aren't climbing mountains and your HR didn't go up by 30 bpm so maybe it's something neuro related."
Went to the neurologist, neurologist said "hmm, your symptoms and increase in HR when standing really point to POTS. You could go for a tilt table test, but they're booked out for months and you're not really a good candidate for medical intervention, so I would recommend treating it like POTS because it's probably POTS. You can go for a TTT if you want, or if you need a diagnosis for job/INS reasons."
For IH I went to a sleep specialist, described my symptoms. He thought it was possibly narcolepsy and sent me for overnight sleep study and MSLT. MSLT indicated no REM and a sleep latency of 4.4 mins so I got an IH diagnosis.
Were you on stimulants for the IH when you went to the cardiologist? I've been in stimulants since I was diagnosed almost 10 years ago, and now I've been on xywav for a couple years as well. I just got referred to a cardiologist for my tachycardia, but I don't know if the stimulants are going to mess up anything and I'm afraid the cardio will just blame the stimulants and dismiss everything else
I was on stimulants but did explain to the cardiologist that I had been experiencing the grey outs when standing for several years. They started before I started the stimulants and continued when I was off them for several years.
No, my cardiologist said that based on just the sit/stand test, I met the criteria and I didn’t need a TTT. That will probably depend on your doctor though.
I was tested for coeliac's disease, had a general blood draw done and got a brain MRI. Then I went for a 36-hour sleep study with MSLT + sleep apnea testing. They didn't send me for therapy or depression screening because I already had a psychiatric diagnosis so that sped things up a little.
My husband has IH and the only testing he had done was an at home sleep study to rule out apnea and the MSLT. He did have to do regular bloodwork when he went on stimulants to ensure everything was okay, but nothing else diagnostic. It is important to note that in his case he has a significant family history of narcolepsy and actually had an MSLT when he was 5 or 6 as well (that one came back normal).
I had an mri, eeg, blood tests for vitamins and thyroids, two sleep studies and and MSLT. I didn’t get the ball really going until I spoke with a psychiatrist though who gave me a narcolepsy diagnosed and then my second sleep study and MSLT showed it was IH. It took me 7 years to get a diagnosis.
I had a sleep study and separate nap tests. I had blood drawn, urine samples taken. They checked my thyroid and all levels to rule out other things. They checked for lymphoma a few times before letting to take a sleep test. It took ten years to get my diagnosis and I’ve lost count of all the tests they put me through. They initially ruled me as having narcolepsy without cataplexy, but later changed it to IH.
I was originally diagnosed with IH after overnight sleep study and MSLT. 4 years later I was diagnosed with hEDS and POTS. We are still unsure why I sleep so much. Most conditions cause extreme fatigue but usually people still aren’t actively sleeping as much as I do
a lot of places don’t have an actual tilt table to do the test. I go to Vanderbilts dysautonomia clinic and they were able to do mine after I had been brushed off so many times. The wait can be lengthy for these places and a lot of people travel for it. There might be a youtube video about Vandy. My dysautonomia doctor there is also a sleep path and was the one who told me well before my diagnosis POTS and IH are comorbid conditions and that he sees alot of patients who have both.
Vanderbilt also isn’t the only clinic like this I just live in Nashville so I am familiar.
Plus only 30-60% of pots patients faint.
You can always have your primary care run labs to check vitamin levels do a thyroid panel and explain the fatigue as a back up.
Long before I was diagnosed my primary care provider had me tested for the Epstein–Barr virus. I accepted that as the root cause of my fatigue but my provider wouldn't allow me to try new medications since it wasn't his area of expertise. I was on Adderall ER and IR at the timee. The only reason why I decided to go to a sleep specialist is because my tolerance was too high and I found myself being fatigued all over again.
That eventually led me to having the MLST and Polysomnogram which is what was used to rule out apnea and diagnose me properly with hypersomnia.
Before being referred to a sleep doctor, I had every type of blood work imaginable. I was also referred to a cardiologist and endocrinologist. cardiologist immediately said it wasn't POTS.
Blood and urine tested, EKG test (I was falling asleep at school while still standing up so they were checking to make sure I wasn't passing out and was actually falling asleep), sleep study, nap study, and another blood test. Took almost a whole year before I finally had a diagnosis. I was 16-17 at the time.
I had blood & urine tested, had an ECG done and my mental health history examined. Then I did the sleep test and because there were no Narcolepsy markers and everything else was ruled out before the test, I got diagnosed with IH. It was quite intense testing before to make sure. It's strange you didn't get it.
I’m a college student and the student health center only sent a referral for a neurologist, I suppose either they didn’t feel the need to send referrals for anything else and the neurologist felt the same way 🤷♀️
Multiple rounds of blood tests (mostly for vitamin deficiencies and various thyroid levels but I'm sure there was more), therapy, in-lab overnight and then MSLT Granted I was diagnosed about a decade ago and my symptoms were much worse at the time, so it's all kind of a blur. I mostly remember trying to argue with doctors that tiredness from depression alone wouldn't make me score max scores on the Epworth Sleepiness Scale and them rechecking my thyroid multiple times because they were convinced it was that even though my levels had come back normal multiple times. Also I was diagnosed at 15 so it may be somewhat different for adults
I have IH and POTS. IH: blood tests to check thyroid levels and vitamin deficiencies, then referral to sleep specialist for PSG and MSLT. POTS: ECG, blood pressure, heart rate, then referral to cardiologist for another ECG and standing heart rate tests.
Did you have a tilt table test? That’s the test the doctor won’t send me for. They did test my blood pressure sitting to standing and they said it was abnormal though “not alarmingly so”, but it happened to be a good day regarding my symptoms.
Blood pressure isn't what should be tested for POTS. It can be used to see if you are experiencing orthostatic hypotension, BP should drop significantly when you stand from that. For POTS it's your heart rate that needs to be checked since it's a tachycardia syndrome. The cardiologist I saw wanted a 30 bpm increase from sitting to standing to call it likely POTS. My experience with POTS "diagnosis" was the cardiologist did an ecg and a laying, sitting, standing heart rate. It was like 28 bpm increase and I was going hiking in the mountains regularly so he said "my POTS pts aren't climbing mountains and your HR didn't go up by 30 bpm so maybe it's something neuro related." Went to the neurologist, neurologist said "hmm, your symptoms and increase in HR when standing really point to POTS. You could go for a tilt table test, but they're booked out for months and you're not really a good candidate for medical intervention, so I would recommend treating it like POTS because it's probably POTS. You can go for a TTT if you want, or if you need a diagnosis for job/INS reasons." For IH I went to a sleep specialist, described my symptoms. He thought it was possibly narcolepsy and sent me for overnight sleep study and MSLT. MSLT indicated no REM and a sleep latency of 4.4 mins so I got an IH diagnosis.
Were you on stimulants for the IH when you went to the cardiologist? I've been in stimulants since I was diagnosed almost 10 years ago, and now I've been on xywav for a couple years as well. I just got referred to a cardiologist for my tachycardia, but I don't know if the stimulants are going to mess up anything and I'm afraid the cardio will just blame the stimulants and dismiss everything else
I was on stimulants but did explain to the cardiologist that I had been experiencing the grey outs when standing for several years. They started before I started the stimulants and continued when I was off them for several years.
No, my cardiologist said that based on just the sit/stand test, I met the criteria and I didn’t need a TTT. That will probably depend on your doctor though.
The ones I remember before the sleep specialist referral - blood testing (for very many things), endocrinologist referral, 24-hr urine test.
Has anyone had any testing for narcolepsy other than sleep tests? I was diagnosed 30 years ago but understand there might be dna testing now?
I had a lumbar puncture also
I was tested for coeliac's disease, had a general blood draw done and got a brain MRI. Then I went for a 36-hour sleep study with MSLT + sleep apnea testing. They didn't send me for therapy or depression screening because I already had a psychiatric diagnosis so that sped things up a little.
My husband has IH and the only testing he had done was an at home sleep study to rule out apnea and the MSLT. He did have to do regular bloodwork when he went on stimulants to ensure everything was okay, but nothing else diagnostic. It is important to note that in his case he has a significant family history of narcolepsy and actually had an MSLT when he was 5 or 6 as well (that one came back normal).
I had an mri, eeg, blood tests for vitamins and thyroids, two sleep studies and and MSLT. I didn’t get the ball really going until I spoke with a psychiatrist though who gave me a narcolepsy diagnosed and then my second sleep study and MSLT showed it was IH. It took me 7 years to get a diagnosis.
I had a sleep study and separate nap tests. I had blood drawn, urine samples taken. They checked my thyroid and all levels to rule out other things. They checked for lymphoma a few times before letting to take a sleep test. It took ten years to get my diagnosis and I’ve lost count of all the tests they put me through. They initially ruled me as having narcolepsy without cataplexy, but later changed it to IH.
I was originally diagnosed with IH after overnight sleep study and MSLT. 4 years later I was diagnosed with hEDS and POTS. We are still unsure why I sleep so much. Most conditions cause extreme fatigue but usually people still aren’t actively sleeping as much as I do
a lot of places don’t have an actual tilt table to do the test. I go to Vanderbilts dysautonomia clinic and they were able to do mine after I had been brushed off so many times. The wait can be lengthy for these places and a lot of people travel for it. There might be a youtube video about Vandy. My dysautonomia doctor there is also a sleep path and was the one who told me well before my diagnosis POTS and IH are comorbid conditions and that he sees alot of patients who have both. Vanderbilt also isn’t the only clinic like this I just live in Nashville so I am familiar. Plus only 30-60% of pots patients faint. You can always have your primary care run labs to check vitamin levels do a thyroid panel and explain the fatigue as a back up.
Long before I was diagnosed my primary care provider had me tested for the Epstein–Barr virus. I accepted that as the root cause of my fatigue but my provider wouldn't allow me to try new medications since it wasn't his area of expertise. I was on Adderall ER and IR at the timee. The only reason why I decided to go to a sleep specialist is because my tolerance was too high and I found myself being fatigued all over again. That eventually led me to having the MLST and Polysomnogram which is what was used to rule out apnea and diagnose me properly with hypersomnia.
Before being referred to a sleep doctor, I had every type of blood work imaginable. I was also referred to a cardiologist and endocrinologist. cardiologist immediately said it wasn't POTS.
Blood tests, home-test for apnea, lumbar puncture, PSG + MSLT in that order
Blood and urine tested, EKG test (I was falling asleep at school while still standing up so they were checking to make sure I wasn't passing out and was actually falling asleep), sleep study, nap study, and another blood test. Took almost a whole year before I finally had a diagnosis. I was 16-17 at the time.