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What Caused My Hypersomnia

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What Caused My Hypersomnia

Postby St.Elmo » Tue Jun 30, 2009 4:01 pm

I was scoping out other forums and saw this one and wanted to share my story in case it helps anyone.

I had hypersomnia for 7 years. Doctors tested me for a bunch of things, mono, hypothyroidism, sleep apnea, anemia, and all the tests were negative. I was put on anti-depressants. None of them helped. I was told I have Chronic Fatigue Syndrome, which basically doesn't have treatment. My ability to get out of bed worsened over time, even though there were periods where I was better.

I took matters into my own hands and got myself thyroid medication. First, at a health store where they sell non-prescription stuff. Then online with the prescription version. My life changed in ONE DAY. I swear, it was so utterly remarkable. That was over a year ago and I've been better ever since. Before, I lost jobs because I couldn't get out of bed for weeks at a time. Now, I'm still not a morning person, but I work Mon-Fri 8:30-5:30pm and never call out to sleep. Never.

I'm not recommending that it is okay for everyone to take whatever they want, but if you can't get you doctor to help you...what is your other choice? I was tested many times for hypothyroidism and was always in the normal range. I don't know why that was but I can tell you for sure, the thyroid meds were the solution. I feel NORMAL! I felt it pretty instantenously, too. And thyroid meds have no side effects(if you need them that is. If you don't, you will feel jittery, heart racing, etc.). It is so simple. I do have a family history of thyroid disease, however, to be clear.

Well, that's my story. Hope it helps. Oh, also, I had depression as a symptom of hypothyroidism. So if you feel like your lack of energy is your biggest problem but your doctor is diagnosing you with depression and you kind of agree, think about hypothyroidism. I swear, it was such a huge change, huge change and so easy...wish I would have done something 7 years ago.
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Re: What Caused My Hypersomnia

Postby Butterfly Faerie » Tue Jun 30, 2009 5:41 pm

There are 3 types of Hypersomnia...

Those being:
Recurrent Hypersomnia:
Sufferers have repeated extreme sleepiness and big sleep requirements. They've been known to sleep as much as 16 to 20 hours a day.

Idiopathic Hypersomnia:
Sufferers complain of excessive sleepiness and prolonged sleep at night. The difference between this disorder from normal long sleepers and narcoleptics is these individuals suffer numerous episodes of non-REM sleep that can last for up to two hours. That is why this disorder is sometimes called non-REM narcolepsy. However, it is different from narcolepsy in that idiopathic hypersomnia does not involve suddenly falling asleep or losing muscle control associated with strong emotions as in narcolepsy.

Hypersomnia Posttraumatic:
Excessive sleepiness that develops as the result of physical injury or disease in the central nervous system. For example, a brain injury, neurosurgery, infection, or spinal cord injury can cause this. Typically, this type of hypersomnia usually goes away over weeks or months.

Has your doctor said any about the type?

Here are possible causes of hypersmonia

- Insufficient or inadequate sleep - long working hours and overtime can be tolerated for months or years before the symptoms of sleepiness take effect. Teenagers may stay out until the early hours of the morning on weekends and be tired during the week.

- Environmental factors - a snoring partner, a baby that wakes, noisy neighbors, heat, cold or sleeping on an uncomfortable mattress.

- Shift work - it is very difficult to get good sleep while working shift work, especially night shift. As well as the problem of trying to sleep, there is also the effect of being out of sync with the body's internal clock (or circadian rhythm).

- Mental states - anxiety can keep people awake at night, which makes them prone to sleepiness during the day. Depression depletes energy.

- Medications - alcohol, caffeinated drinks, tranquilizers, sleeping pills and antihistamines can disrupt sleeping patterns.

- Medical conditions - hypothyroidism (underactive thyroid gland), oesophageal reflux, nocturnal asthma and chronic painful conditions.

- Changes to time zone - jet lag. Sleep is regulated by an internal biological clock that responds to light.

- Sleep disorders - such as sleep apnea, Restless Legs Syndrome, sleep walking, narcolepsy, idiopathic hypersomnia and insomnia.

Here is the site where I located this information: http://sleepdisorders.lifetips.com/cat/ ... persomnia/
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Re: What Caused My Hypersomnia

Postby St.Elmo » Wed Jul 01, 2009 5:53 pm

Thanks for the info.

Quite honestly, my doctor wasn't helpful. I had to figure it out for myself.

I suppose it would have been recurrent hypersomnia. I don't have it anymore. I am 100% cured! :D And the cause in my case was hypothyroidism. By far, my biggest symptom was having no energy despite sleeping every chance I could get, which sometimes meant all weekend, into the week, etc.

I wanted to post in here because I read so much on hypersomnia when I was searching for what was wrong with me. I considered it my biggest symptom along with the lack of energy. I couldn't believe how my life changed so quickly and with just one drug. I don't mean to sound like a commercial, but that was my experience. I know how bad it sucks to spend your life in bed so I try to pass my story along in case it might help others.
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Re: What Caused My Hypersomnia

Postby linlin » Fri Jan 11, 2013 4:48 pm

Hi St. Elmo,

When you were tested for hypothyroidism, what did the blood test show? What were your TSH-levels?
I have the exact same symtoms as you are describing. And my twin sister was diagnosed with underactive thyroid a couple of years ago. And since it's highly genetic, I thought I'd see if I might have the same problem.

Had my blood tested, and it showed a TSH-level of 2.3. Doctor told me this is perfect. I quote: "That's bang on. Straight in the middle. Absolutely perfect."

She told me my symptoms are due to depression, and to take 60 mg instead of 40 mg fluoxetine (prozac) to see if that helps. Been on that dose before, and knew it wouldn't help.

I've now read up on thyroid problems, and know that 2.3 is not perfect at all. But it's not that bad. I do however think that a low dosage of thyroxine might help me. At the same time I'm a bit scared taking the medication without a doctor's prescription.

Anyone else that are in a similar situation as me? Does anyone know if doctors treat people with Thyroxine even though they're levels aren't "that bad"?


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Re: What Caused My Hypersomnia

Postby maree12 » Mon Jan 02, 2017 12:06 am

Hi St Elmo
Thank you so much for sharing your story. I have been chronically tired for 21 years, and have considered that low thyroid might be the problem (along with Adrenal Failure), but, of course when they do the pathology tests, my results fall in the "normal" range.
My feeling is that, when I am well, my results are above the normal range, so "normal" is not healthy for me. I was worried that taking some of this stuff that is not prescription could ruin my current thyroid production, forever, so that I would, eternally have to be on meds, with their on going side effects, but, I will certainly reconsider that.
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Re: What Caused My Hypersomnia

Postby sleepybeanie13 » Thu Apr 13, 2017 4:23 pm

In case anyone is still reading this thread, I wanted to share the experience I've been having with hypersomnia and my thyroid.

I've always been a "long sleeper", even as a teenager (28 now), but always attributed this to depression. Symptoms worsened when I was about 22, thyroid tests came back normal, yada yada.

Then last year the sleepiness became really debilitating for the first time, despite having been on a non-sedating antidepressant (bupropion XL 150 mg) since age 22.

GP ordered all the usual tests, thyroid came back normal again. Psychiatrist upped my bupropion to 300 mg, but the problem kept getting worse. Was referred to sleep doctor, normal nighttime sleep architecture but MSLT results indicative of excessive daytime sleepiness (sleep latency of 2 min, 1 min, 1 min and 0 min), but as naps were non-REM, probably not narcolepsy.

For the past 9 months or so, whenever I feel these sudden extreme sensations of sleepiness (I call them "sleepy attacks"), they are usually accompanied by a feeling of extreme thirst, which doesn't go away no matter how much water I drink. Because of this, Sleep Doc referred me to endocrinologist. Basically ruled out diabetes insipidus though because I'm urinating a normal amount considering how much water I'm drinking.

Despite my previous normal thyroid tests, Endocrinologist did another thyroid panel plus testing for anti-thyroid antibodies, just got results last week. This time, TSH came back elevated (5.1 I believe) and both anti-thyroid antibodies were way out of the normal range (normal was less than 60, and mine were like 160 and 210 or something like that). Surprisingly, my T4 was still in the normal range (around 1.14). But since it was clear there was something autoimmune going on with my thyroid, he put me on 50 mcg of levothyroxine to see if it would make me feel better.

I wish I could say I saw instantaneous results like St. Elmo. Today is Day 3 of levothyroxine and I'm exactly the same as before, although I wasn't really expecting to notice any results for at least 2 weeks. So we'll just wait and see.

Now, Sleep Doc is fascinated by this auto-immune thing because of the recent research being done on an autoimmune component of narcolepsy, but he can't test my hypocretin or HL1 levels because my insurance doesn't cover them. Apparently his colleague is researching comorbidity of other autoimmune disorders with narcolepsy, so he sent my file over to her to see if she finds it interesting. We'll see :-) He's fascinated by this idea that I could have a secondary autoimmune narcolepsy, which apparently would be something new and interesting in their line of research.

So, hopefully this levothyroxine will eventually solve my problem. Like St. Elmo, in the absence of any possible explanations for this sleepiness, I probably would have just started taking it on my own. I read a scientific journal article about complementary therapies for people on Bupropion with hypersomnia, and they had good results giving them levothyroxine even when their levels were within the normal range to start, and said it was well-tolerated with no side effects. So to anyone who is concerned about trying it because your results are technically normal and you don't want to screw up your thyroid for life, there's that.

Meanwhile, Sleep Doc says if the levothyroxine doesn't cut it, we'll just have to use a narcolepsy med like Modafinil. I've seen people in the US say it's extremely expensive and hard to get, so I thank my lucky stars I'm in Spain and I can just walk down to my local pharmacy and get it no problem. I found an online pharmacy that sells it quite cheap, manufactured in India, but unfortunately they don't ship to the US because of the strict rules on meds there.

Anyway, I tried the Modafinil from my pharmacy here and from India and the batch I got, at least, was legitimate. Apparently, the drug is so cheap to make it isn't even worth counterfeiting.
[mod edit]

TL;DR: Anti-thyroid autoimmune disorder can exist even with normal T4, waiting to see if levothyroxine helps, otherwise I'll be stocking up on Modafinil from India.

Best of luck to everyone fighting to live a normal life with this problem!
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Re: What Caused My Hypersomnia

Postby Jamie514 » Tue Apr 18, 2017 2:29 pm

I think you do not sleep in just time at night because sometimes for my office's works I can't go to my bed for sleep in right time at night. As a result, anytime I fall asleep in my office and my colleague laughed to me. But I have no "Hypersomnia" that I think, you may have "Hypersomnia" and if you think this so you need go to an expert for urgent.
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