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#1 Drizown1

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Posted 14 October 2013 - 10:35 AM

First, I want to thank you all for sharing your experiences! They have been a tremendous help for me in understanding my situation. I am 36 years old have been extremely tired since the age of 13. I remember falling asleep a lot in school and would nap whenever I could. I never thought anything of it. My father is a physician and anytime I would mention being tired, he told me it was normal, that he gets tired too in the afternoons. Ive managed to get by in life with this "thing", dealing with it as normal. Looking back, the quality of my life sucked. I was depressed and anxious all of the time, and had difficulty concentrating. I eventually began self medicating and abusing alcohol and any other substance I could obtain to feel better. The only thing about my being tired that really bothered me was driving. As soon as I would get on a highway, out of city traffic, I would nod off.

Fast forward to today. I eventually sobered up at 27 and began my life anew. However, the tired thing kept following me. I would nod off at desk jobs and again would be napping as much as possible. During the last 9 years I started getting meds for my depression and anxiety, mainly Paxil. I still complained to my psychiatrist as well as my PCP that I was constantly tired especially when driving. I was always told its normal- you are a healthy young man.

To skip a lot of details and drama, I eventually took it upon myself to seek a sleep specialist. At the time I was already taking Adderall because of an ADHD diagnosis. I was having trouble sleeping as a side effect.

So the specialist's immediate assessment of me was that I "most definitely have sleep apnea". After a number of tests being inconclusive, he gave me a trial CPAP to use. According to the machine, I "definitely had apnea". Finally I had another overnight sleep study done in which it was determined I dont "have sleep apnea". The following day's MSLT diagnose me with IH. My AHI was 3. My mean latency on MSLT is 3. And I only had one REM period.

So now I feel like after everything Im right back where I started. Sleep Doc wanted me on xyrem. Psych highly advised against it because of my substance abuse history. So Im currently prescribed Nuvigil with adderall as necessary. Still having attacks while driving.

Finally I will say that I would just give up on all of this but as I get older and more mature, i realize how reckless it is to drive like this. And to top it off, I make a living driving! Im a videographer for a TV news station so I constantly drive long distances. Very scary. Due to anonymity purposes I wont disclose the few times I have had consequences due to this.

Im lost, confused, and starting to lose hope.

#2 Chemist

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Posted 14 October 2013 - 12:25 PM

So you don't have cataplexy, sleep apnea (excluded by overnight polysomnogram), or narcolepsy (excluded by MSLT.) Is that correct?

 

Excessive daytime sleepiness in the absence of narcolepsy or sleep apnea can have multiple causes which must be excluded before a diagnosis of Idiopathic Hypersomnia. I assume you've been through the exclusionary process? You've been checked for anemia, endocrine issues, all that stuff?

 

Also, this has been pretty much constant and of the same severity since the age of thirteen? What were you like at age twelve? Was onset sudden and severe or gradual? Did you have any severe illnesses or injuries prior to it developing?

 

If you don't mind, maybe you can also explain what kind of issues with depression and anxiety you have, and how those responded to (or didn't respond to) SSRI treatment in the past.



#3 Drizown1

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Posted 14 October 2013 - 01:27 PM

Thanks for the response! I must say, having been depressed, anxious, and tired for the majority of my life, I don't remember clearly if this came on suddenly or gradually. However, I did have some physical issues around that time regarding my late stage puberty. At 13, I was abnormally small. However, around 15 I eventually caught up. Then I developed severe acne issues. My self-esteem dropped as a result of this. I began to feel depressed, anxious, and withdrawn most of the time.

As for ruling out other issues, I have always been told by my primary physician, that my blood work is perfect. I have never had any major illnesses. I have only suffered psychologically for most of my life.

My experience with SSRIs is the following, I really didn't start using them until into my early 20s. I have only tried Zoloft, wellbutrin and Paxil with a short trial of a effexor. They all seem to work moderately. They are not great. But I find trying to stop them is difficult.

I also suffer from environmental and shellfish allergies.

#4 Drizown1

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Posted 14 October 2013 - 01:41 PM

Oh and yes the MSLT ruled out Narcolepsy and the overnight poly ruled out apnea.

#5 Chemist

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Posted 14 October 2013 - 02:21 PM

What physical symptoms of anxiety do you get? Dry mouth, sweaty hands and feet, cold extremeties, racing heart, palpitations, any of that sort of stuff? If so, does that sort of thing only happen when you're actively thinking about something that worries you or does it seem to happen randomly? How is your blood pressure and heart rate, typically? And what kind of allergies do you have? Are you exposed to them in your home (e.g. dust mites, dogs, cats, fungus, molds, etc.) Why did you say you only had a short trial w/ Effexor? Did you get negative side effects that caused you to discontinue it or something?



#6 Drizown1

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Posted 14 October 2013 - 03:38 PM

Sorry for being vague....
Anxiety- mostly managed now due to therapy and Paxil...used to be situational-social. When I do experience symptoms now they include heart palpatations, sweaty palms...

Blood pressure is normally on the low end and heart rate is typically normal.

Allergies- developed in my 20's. When tested about 6 years ago I came up positive for almost everything in my environment- molds, dust mites, dander, grass, pollen, weeds, as well as food positive for shellfish. Did allergy shots regularly for about 3 years. Recently back on meds- claritin, nasonex, and advair. Yes, they are in my home and all around me as I work in various locations daily.

Tried effexor thinking it would help with my daytime sleepiness compared to paxil. However, I quickly fell into depressive states when discontinuing paxil. And effexor did not compensate...

#7 Chemist

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Posted 14 October 2013 - 10:22 PM

Wow, definitely watch for rashes while on Nuvigil, then. Sounds like you're quite sensitive to allergens. You could try Remeron since they don't want to prescribe Xyrem if they don't have to. It may help improve your sleep, plus it's a very potent antihistamine which can be useful to have in your system at night when you're most exposed to dust mite allergens from your bedding. You might want to get checked out to make sure you don't have any autonomic issues going on either as a result of or in addition to your allergy issues.

 

If it's not a burden to do so, you might consider getting a good HEPA filter for your bedroom and make sure you use allergen filters for your home if you haven't done that already. The allergen filters (typically MERV 13) won't remove as much as a HEPA filter, nor is the air turnover rate in a typical house high enough to clean the air sufficiently, which is why it's still best to have a HEPA filter in your bedroom. Antihistamines are useful in preventing some of the worst symptoms from histamine release, but they don't prevent release of histamine from mast cells themselves, and therefore they can't fully suppress the immune reaction that occurs when you come into contact with an allergen.

 

You might also look into getting the allergy shots for dust mites. Dust mite allergies really are just miserable because they're on our sheets, they're on us, they're in the carpet. And then when you get in bed at night you're literally sticking your face into the area where their allergens are most concetrated and all night long your immune system is on high alert. There's no guarantee ridding yourself of dust mite allergies would improve your fatigue, but even if it didn't you at least wouldn't have to worry about essentially being allergic to your bed.

 

In summary, I'd say see if you can't try Remeron. It is possible to combine it with other antidepressants. So you could try combining it with Effexor for instance to see if that helped you any during the daytime or improved your response in general. If you're still on Paxil currently, then you might have to change the dosage of Paxil but it can be combined with Remeron. Anyway, it's an idea.



#8 Drizown1

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Posted 17 October 2013 - 01:43 PM

Thanks for all of your advice! I will look into many of those options. I do use a hepa filtration air purifier in my bedroom. Seems to help.

So my latest view on all of this is to "surrender". The frustration I have been experiencing lately has to do with the Hypersomnia Diagnosis. I still have a hard time accepting that there is no underlying cause that creates this. Just doesnt make sense. But after speaking with my Psychiatrist, my Sleep Doc, and my Primary I am being forced to swallow my pride. They all think I may be "obsessing" in trying to find the "root cause". So there you have it. Deal with this as best I can, hopefully without consequences such as passing out while driving.

Latest medication regime:

Paxil IR 2x20 mg at night
Clonidine 0.05 at night
Doxepine 5-10 mg at night

Adderall xr 30mg in morning
Adderall IR 15mg up to 3 x as needed

#9 ironhands

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Posted 17 October 2013 - 02:06 PM

Oh there is almost certainly an underlying cause; they just don't know what it is, that's what the "Idiopathic" part means.

 

The MSLT also didn't rule out N, it just wasn't positive.  Neither of the two tests can rule out anything with a diagnosis, they can only report what was observed in that instance, since the tests aren't as straightforward as a bloodtest might be.

 

Many feel that the MSLT isn't a very good diagnostic tool, especially when there's so many other factors that can throw it off, like anxiety, new surroundings.....  Dr. Mignot at Stanford recently published that there's no need for an MSLT at all if there is an observed low REM latency on the PSG portion with no other explaination.

 

Point is, don't worry about the root cause, because it really doesn't matter, and neither does what they've labelled you with.  What matters most, is that you feel better with new treatment.  I remember being on Paxil... I slept much worse, dreams were much more intense, and I was a lot more tired, despite feeling more energetic.



#10 Drizown1

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Posted 17 October 2013 - 02:16 PM

Thank you for that much needed support. From what I am beggining to grasp is this is a process and I may never fully understand it. I guess I was finding difficult the acceptance that with all of modern medicine, I wont yet find that magic fix for this. But I hope to feel better as you say. Thanks again.

#11 ironhands

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Posted 17 October 2013 - 02:28 PM

modern medicine is still very, very far from what it could be capable, especially when the primary goal of most "reasearch" is creating a marketable product.

 

Magic fix?  Probably not going to happen, but I can relate.  All of my life I'd been told I was just lazy, or just depressed.  Finding out there is something more to it (and something that isn't my fault!) was a  huge relief... I'm still waiting on a proper diagnosis, but I really don't care what the label is; because I know that what I'm experiencing, and have been experiencing, is a neurological condition caused by an autoimmune problem.  There is currently no cure, and probably won't be in my lifetime, but there are treatments, and a support network full of people with similar stories.



#12 Chemist

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Posted 17 October 2013 - 08:12 PM

Thanks for all of your advice! I will look into many of those options. I do use a hepa filtration air purifier in my bedroom. Seems to help.

So my latest view on all of this is to "surrender". The frustration I have been experiencing lately has to do with the Hypersomnia Diagnosis. I still have a hard time accepting that there is no underlying cause that creates this. Just doesnt make sense. But after speaking with my Psychiatrist, my Sleep Doc, and my Primary I am being forced to swallow my pride. They all think I may be "obsessing" in trying to find the "root cause". So there you have it. Deal with this as best I can, hopefully without consequences such as passing out while driving.

Latest medication regime:

Paxil IR 2x20 mg at night
Clonidine 0.05 at night
Doxepine 5-10 mg at night

Adderall xr 30mg in morning
Adderall IR 15mg up to 3 x as needed

 

Looking at this medication list, it's hard to believe even a healthy active person could feel awake and refreshed on these. Both clonidine and doxepine are extremely sedating. Paxil can also be sedating and, even worse, often causes insomnia in addition to the fatigue. Claritin is a second generation antihistamine which is less sedating than the first generations, but there's still some light sedation that occurs. And I realize you're dosing at night with the antidepressants, but that only helps with the intial onset or rush of sleepiness that goes along with that. Their half lives are so long that they're still going to have a sedating effect the next day.

 

I'm curious to know if you've ever tried Wellbutrin as an antidepressant? It is non-sedating and is often somewhat stimulating, although it can cause insomnia as a side effect. If you could replace your current antidepressants with just Wellbutrin, I think you'd feel a lot better during the daytime. If Wellbutrin wasn't strong enough by itself, you might have to keep the Paxil added in.

 

Another option which I mentioned before is Remeron. It can be very sedating during the first week or two due to its antihistamine properties, but you wouldn't experience that as you've already been desensitized to that effect from taking doxepin. It would be less sedating than your current antidepressant combination, and possibly just as effective.

 

Unfortunately, without you actually trying them, it's impossible to say how well they would work for you or if they would work at all. I think they would definitely be worth trying though, since like I said even active healthy persons struggle with sedation on your current combination of antidepressants/antihistamine.

 

And one last question, did you stop taking the Paxil and other antidepressants before you had your sleep study and MSLT done? Antidepressants which increase serotonin are known to suppress REM sleep and can screw up the results.



#13 Drizown1

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Posted 18 October 2013 - 05:20 AM

Chemist,

I totally agree with you in regards to the medications being sedating. The Sleep Doc ad well as the Psych also are aware of this. I did stop everything except the Paxil for the study. Under the guidance of the docs, that medication, along with its high dosage, is really hard to stop cold turkey. Ive tried to stop before with negative results. I have been taking it now for about 8 years. I know it may have resulted in a not no accurate sleep study, however, looking back over my life, I was still tired even before ever taking Paxil. I have tried Wellbutrin with very little if any positive effect.

The doxepine is merely a solution to good rest. I will ask about Remeron during my next visit. I have a feeling the Psych will tell me its the same as doxepine- being another tricyclic antidepressant.

Again, I really appreciate all of your input! Its really helpful to know people out there understand this struggle.