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Scared And Awaiting Diagnosis. What To Do For Now?


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#1 CopingWithASideOSleepiness

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Posted 04 October 2013 - 08:05 AM

I went to my GP after reading an article written by someone with hypersomnia and finally realizing that my sleeping habits weren't something that was normal. He's super thorough and immediately sent me to get blood work done, and a thyroid sonogram as well as giving me a referral to a sleep specializing pulmonologist. I go today to discuss the blood work and sonogram with him, however the pulmonologist already went through them with me and said all of my blood work is normal for a perfectly healthy 25 year old woman (I do have nodules on my thyroid but thyroid levels are normal and no antibodies)... and through talking with me and taking my history she believes I have narcolepsy. I'm waiting for the call to schedule my sleep study and MSLT. 

 

In the meantime, I'm trying to learn as much as I can. That's why I'm here. I'm scared because I've been sooo absolutely exhausted lately. I've never consumed so much caffeine in my life. It's not even helping. It makes my body feel jumpy but does nothing for the feeling that I have to sleep right now- absolutely have to. Is there anything you would suggest I do in the meantime to help me be less sleepy? I obviously can't take medication for it since I don't have a diagnosis but is there anything over the counter you would suggest or even how I might structure my schedule to alleviate this a little bit?

 

By the way, symptoms: Severe EDS, falling asleep extremely quickly, dreaming before I'm asleep, difficulty waking, automatic behavior, seeming to wake up and shut off alarm and not remembering it, wild and vivid dreams, waking up with the same level of sleepiness that I went to bed with, what the doctor believes to be cataplexy (going weak in the knees and feeling weak all over when severely upset)



#2 ironhands

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Posted 04 October 2013 - 08:29 AM

That almost certainly sounds like narcolepsy - don't be scared, things are likely only going to get better.  The sleep test and MSLT are nothing to worry about, just annoying as all hell.

 

There's not much to do now, the docs usually want you drug free prior to the testing..  But diet changes, and exercise, can help some stay awake.

 

As for treatment, I'm sure the doctor told you there's several stimulants you can take, each with their own side effects, no 100% foolproof pill though, or any sort of cure.



#3 Ferret

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Posted 04 October 2013 - 10:13 AM

There is lots of good information on this board about coping...diet (not dieting but what kinds of food you eat and when), lifestyle changes and exercise.

I would ask your Pulmonologist how many Narcoleptics he/she treats. Why? Because Pulmonologists are usually much more familiar with sleep apnea as a cause of excessive sleepiness. You MAY benefit more from a Neurologist who is very familiar with Narcolepsy.

As previously stated, there are lots of meds available now. Some may work for you and others may not. It's trial and error and a huge emotional rollercoaster finding what works. Hang in there!



#4 b.chrissie@yahoo.com

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Posted 04 October 2013 - 10:42 AM

Don't be afraid or worried, this is where things start to look up. Now you will know why you feel this way and you will know that there is a reason, which helped me a lot. I always thought I was lazy or something. I share almost identical symptoms with you, especially extreme exhaustion all day long and the inability to wake up in the morning, or waking up and turning off my alarm, in the other room, with no recollection of doing so.

 

The testing, as someone else here mentioned, is a piece of cake, it is just annoying having the wires on all day. The really tough part once you have a diagnosis is finding the right meds. It is totally worth it though. I was diagnosed back in June and am currently trying my fourth therapy, Xyrem. So far it is the best one yet. Just pay attention to any different feelings or emotions you have when trying new therapies, that will help guide you. After the first three meds I tried, I decided to go natural. That helped a little but it just isn't enough. I was eating 0 carbs during the day, extra protein and taking these supplements: GNC womens energy packs and the supplements at this website: 

 

I did a lot of research on natural remedies, everything said pretty much the same but this site supplied doses and the best times to take them. As I mentioned, it wasn't enough for me so I am still using the supplements but am taking Xyrem. I am only on my fifth day but I am definitely seeing some positive changes.  I was really against it because it was pretty frightening, but research helped. Do as much research as you can, from viable sources. That and the Narcolepsy Network have been my biggest saviors on this journey so far.

 

Since I am new to this as well, and in this case it really has helped to have people to talk to in the same circumstances, please feel free to keep in touch and ask any questions, I am an open book. Please keep in mind, as this site has really taught me, take every experience with a grain of salt, no one person has the same reaction and experience with therapies. Try them until you find one that works and do not be afraid because of other peoples side effects, please trust me on that. I was terrified of the Xyrem and so far it has been the best one for me.

 

Good luck!



#5 CopingWithASideOSleepiness

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Posted 04 October 2013 - 10:59 AM

Thank you, everyone!

 

I'm just back from a visit with my GP now. I hate that I have to switch because he's joining the VA. He's a dream to have. 

 

So, while most of my blood work was fine, it did show that I've had mono recently. He's said I should be feeling better now though and not worse. Also, the nodules on my thyroid were enough of a concern (even though levels are normal) that he's sending me to an endocrinologist ASAP to have them evaluated there. He says he feels more comfortable with an expert ensuring that they aren't a concern and testing my other hormone levels. 

 

He said that he agrees with the pulmonologist and that I should proceed with the sleep study. Even if something is off with my thyroid, it doesn't exclude narcolepsy. 

 

@Ferret, Thank you for the concern. I asked her about how much experience she has with narcolepsy. She currently has 6 patients that see her regularly for it. The option on seeing a neurologist is out there if after I have my sleep study done it shows definite narcolepsy. However, it may be unrealistic as I would have to drive (or have someone else drive) to DC or Baltimore (2ish hours) to see one as I live in Southern MD. The pulmonologist is a 30 minute drive. 



#6 ironhands

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Posted 04 October 2013 - 10:59 AM

Oh, napping!  If you feel the need, take a quick nap or two during the day if possible, instead of fighting to stay awake all day.



#7 CopingWithASideOSleepiness

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Posted 04 October 2013 - 11:08 AM

Oh, napping!  If you feel the need, take a quick nap or two during the day if possible, instead of fighting to stay awake all day.

 

I think I'll have to start scheduling some. My 4 year old is home all day but she likes to cuddle. So, I could probably take a nap on the couch and she could curl up with me and watch a movie. 

 

My issue would be waking up though. When my alarm goes off, I shut it off without realizing or it continues to go off and it just becomes a part of my dream. 



#8 Ferret

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Posted 04 October 2013 - 01:20 PM

This is where your four year old starts to learn to tell time...when the big hand is at ? and the little hand is at ?...bug mummy 'til she wakes up.

Take a deep breath...it's a journey.

 

@ b.chrissie...I just recently read that, although there is a lot of tryptophan in many proteins, that your body needs carbs to absorb it. That was news to me and is among a million sites I have been researching for my hubby with regards to his recent surgery. 

Serotonin is (one of the neurotransmitters) responsible for the restful stage of sleep...it is produced from the amino acid tryptophan and requires B6 to get to Serotonin...caffeine interferes with that process.



#9 Chemist

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Posted 04 October 2013 - 01:51 PM

Mono can cause severely extreme fatigue for several months. There are two blood tests for it. One will show if you have an active or recent infection. The other will show if you've ever had the virus in the past.

If the symptoms you've described have been occurring for more than a year or two, it's likely a sleep disorder / narcolepsy. If it's only started in the past year or two, it could be mono.

#10 CopingWithASideOSleepiness

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Posted 04 October 2013 - 04:14 PM

Mono can cause severely extreme fatigue for several months. There are two blood tests for it. One will show if you have an active or recent infection. The other will show if you've ever had the virus in the past.

If the symptoms you've described have been occurring for more than a year or two, it's likely a sleep disorder / narcolepsy. If it's only started in the past year or two, it could be mono.

 

The EDS has been exacerbated in recent months.

 

The rest are symptoms that I've had for so long I just considered them normal and had coping mechanisms for. Even the EDS was there, it's only worse now.

 

The doctor also said that it's possible that I had mono recently (within the last 3-4 months) but not very recently (within the past month)



#11 Chemist

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Posted 04 October 2013 - 06:11 PM

Probably a sleep disorder that was exacerbated by mono, then. I had mono several months back and can confirm it makes the daytime sleepiness about ten times worse. I was really only able to get out of bed to do essential things for several weeks. Even taking stimulants barely made a dent. Unfortunately it's also one of those things where the older you are when dealing with it the longer it can take to recover. It took me about three and a half months and I'm in my mid twenties. Hopefully it clears out of your system soon. As for the sleep disorder the MSLT should help determine if it's narcolepsy. If it is, the hardest part is just finding what drugs work the best for you since there's such a huge variation in how people respond. Once that annoying part is over though things only get better. Just remember nothing about you changes upon getting a diagnosis. You've had whatever this is for years; now you'll just know what it is and how to deal with it.