Jump to content


Photo

Help Me Understand


  • Please log in to reply
5 replies to this topic

#1 Rambler65

Rambler65

    Member

  • Members
  • 11 posts

Posted 05 January 2010 - 11:28 PM

Ok new to all of this. Had a brain injury and have not felt good since. Doctor decided to do a sleep study. Here is what the note said. From this information the doctor would like to try medicine. Didn't feel like I was asleep as much as they said. Felt like I was always waking up.



My questions to all of you -

They said heart rate was fine. They look high to me. They didn't explain what the whole CO2 means so I guess it is all good. Can anyone explain?

For the nap test they just said medication will probably help with the fatigue during the day. Does this results mean I have narcolepsy?

Thanks for any help

Edited by Rambler65, 13 January 2010 - 12:46 PM.


#2 Mike M

Mike M

    Member

  • Members
  • 379 posts
  • Gender:Male
  • Location:Saint Paul, MN
  • Interests:Ultimate Frisbee, Literature, Film, Music, Narcolepsy, Education

Posted 06 January 2010 - 01:37 AM

Rambler65,

I will certainly offer my 2 cents, but please know that I am simply another PWN (person with narcolepsy) and have NO medical training. Unless the doctor who ordered the polysomnogram (PSG) and the multiple sleep latency test (MSLT) is a certified sleep physician, I would encourage you to make an appointment with one, particularly if you can find a neurologist who specializes in sleep.

They said heart rate was fine. They look high to me. They didn't explain what the whole CO2 means so I guess it is all good. Can anyone explain?


While 123 BPM (and even 115 BPM) do seem to look high, I would guess that you have nothing to worry about. For your heart rate and the carbon dioxide levels (and your oxygen level for that matter), the levels are tracked during the PSG to look for obstructive sleep apnea (OSA). Your CO2 levels look just fine. Basically, you had a "high" CO2 level for less than one percent of your sleep time. Basically, it IS all good.

For the nap test they just said medication will probably help with the fatigue during the day. Does this results mean I have narcolepsy?


From what I understand, your PSG would definitely indicate sleep issues (got LOVE an arousal index of 13 per hour - basically that means that your sleep is like someone pokes you every 4-5 minutes causing you to stir). Your MSLT (a flawed, but revered, test) would strongly indicate narcolepsy. My sleep doctor would say, "it's a slam dunk." Most sleep doctors would give a diagnosis of narcolepsy with REM in only 2 of the 5 naps. Since you had it in 4 of 5 AND your longest latency was below 5 minutes, even a conservative sleep doctor would likely swear that it is narcolepsy.

Do you experience cataplexy at all? If not (or even if it is minor or infrequent), you are probably narcolepsy without cataplexy (which is my diagnosis). If you do experience clear muscle weakness as a result of emotional triggers (which is what cataplexy is), you are then narcolepsy with cataplexy - approximately 70% of PWNs are narcolepsy with cataplexy.

As for medication, stimulants and/or arousal medication (Provigil and NuVigil) will definitely help with the excessive daytime sleepiness, but a good sleep doctor would likely discuss night time meds too. Many PWNs take something at night to help get some deep wave sleep (the primary cause of excessive daytime sleepiness for PWNs is the fact that we get little to no deep wave sleep). Since it seems to be a brain injury that has caused the onset of your narcolepsy, it is likely that only some of the hypocretin producing cells in your hypothalamus were destroyed. Nonetheless, standard treatment for narcolepsy (with OR without catplexy) is Provigil and Xyrem. Unfortunately, many doctors seem to distrust Xyrem, and PWNs all seem to react differently to all of the meds used to manage narcolepsy. Some PWNs only need Xyrem (which is a MASSIVE depressant and is taken at night). Others function great with just Provigil. I, however, need Xyrem and a stimulant. Although Provigil works great for many PWNs, it caused me extreme anxiety (and extreme weight loss). Ironically, I experience far less anxiety with amphetamine.

I hope my comments help. PLEASE feel free to ask more questions. In my opinion the toughest thing about narcolepsy is that few doctors understand it. As a result, most PWNs only get the run around from docs. It is only fellow PWNs who provide tangible answers and who help remind us that we are not insane.

Cheers!

#3 Rambler65

Rambler65

    Member

  • Members
  • 11 posts

Posted 06 January 2010 - 09:37 AM

Mike,

Thank you for your reply and explaination. The study took place in a huge teaching hospital and one of the leading doctors. Unfortantely he is very busy and I didn't get to read the print out more carefully until after I saw him, so really couldn't ask him anything. They want to put me on Provigil so I will give it a try. Since my accident I don't feel like a sleep very well. I have tried Melatonin but didn't notice that it helped. 

Until I had this test all the doctors would say is that I was depressed and that is why I couldn't sleep or sleep well. I kept telling them I didn't think I was depressed... frustrated with my new limitations but just want to get a good nights sleep. I would not take any of the anti-depressants until they did a sleep study.

I see that you wrote that you lost weight on Provigil. I am having problems keeping weight on, so don't want to add to a problem with a new medication. Is weight lost a normal side effect? I will read up on Provigil while I wait for insurance to approve.

(got LOVE an arousal index of 13 per hour - basically that means that your sleep is like someone pokes you every 4-5 minutes causing you to stir)

that is how I feel.  :) :)

When I saw the heart rates I could not help from wondering if that is why I never felt rested. During the day my heart rate is in the 60's so why it would be running that high while I am resting, makes me wonder. Just another piece to the puzzle.

Thanks again I feel I understand this better.



#4 Mike M

Mike M

    Member

  • Members
  • 379 posts
  • Gender:Male
  • Location:Saint Paul, MN
  • Interests:Ultimate Frisbee, Literature, Film, Music, Narcolepsy, Education

Posted 06 January 2010 - 10:35 AM

I see that you wrote that you lost weight on Provigil. I am having problems keeping weight on, so don't want to add to a problem with a new medication. Is weight lost a normal side effect? I will read up on Provigil while I wait for insurance to approve.


A decent number of people have lost weight on Provigil, but for most I think it is a result of appetite suppression. Mine seemed extreme because I seemed to react FAR more strongly to Provigil's stimulation than most. My doctor actually tried to joke with me, "so, you need something milder than Provigil, hmm..." The implication was that most patients want to get off things like amphetamine because stimulants make people feel so anxious. In the end, I dropped nearly 50 pounds in about 4 months. Much of that was the Provigil. Of course going off it, coupled with the BP med I had to take due to the amphetamine, have lead to me gaining nearly all of it back, but the uncontrolled weight loss is something I hope to avoid in the future if I do change meds again.

You also mentioned that you already felt before the sleep study that you were having trouble sleeping. Certainly talk to your doctor, but if things don't improve within a month to two months with whatever you start on, push for a change. I am surprised that your doctor did not suggest something to consolidate your deep wave sleep (like Xyrem) because Provigil or a stimulant will help you stay awake, but daytime meds do NOT help with night time sleep. Just an FYI.

When I saw the heart rates I could not help from wondering if that is why I never felt rested. During the day my heart rate is in the 60's so why it would be running that high while I am resting, makes me wonder. Just another piece to the puzzle.


I had another thought this morning (likely because Xyrem is no longer dragging me into sleep) that you elevated night time heart rate could be due to excessive REM. Some PWNs experience hypnogogic and hypnapopmic hallucinations in REM (essentially dreams and nightmares so vivid that your brain actually thinks that you are awake). If those REM experiences are stressful (even if you are not remembering them), it could easily cause your heart rate to increase. I have not thought of that before, but it is worth asking your doctor about. Again, I don't think the rate is a concern, but it would be interesting to know why it might be so elevated in sleep (when one would assume a person's heart rate would drop).

Good luck as you move forward. Keep asking questions and keep reassuring yourself that you are not crazy. At least for me, narcolepsy has a tendency to constantly make me question my sanity. Feel free to send me a personal message if you want. I tend to be fairly open about how narcolepsy has impact me and my life - so much so that I have written a public blog about it for nearly two years. One final thought, see if there is a support group in your area. The national Narcolepsy Network conference is AMAZING because you get to hang with HUNDREDS of PWNs, but it is also important to have local PWNs too. I have found that even my wife (who is remarkably supportive) sometimes just does not "get it," so it is nice to have true friends that are also experiencing the bizarreness of this disease.

Cheers,

Mike

#5 GaryReimer

GaryReimer

    Member

  • Members
  • 6 posts
  • Gender:Male
  • Location:Potsdam NY
  • Interests:Drawing, Mechanical anything, Electricity and Electronics, Aerospace, Computers, Psycho-Neuro-Immunology, Pizza (I am forever an addict), Architecture, Engineering, and listening to other people talk about their interests.

Posted 08 January 2010 - 11:02 AM

Ok new to all of this. Had a brain injury and have not felt good since. Doctor decided to do a sleep study. Here is what the note said. From this information the doctor would like to try medicine. Didn't feel like I was asleep as much as they said. Felt like I was always waking up. 

Sleep Parameters:There was 668.8 minutes of total study time analyzed of which 475.5 minutes were spent in sleep for a sleep efficiency of 84.2%. Sleep efficiency after sleep onset was 98.2%. Sleep latency was 1.5 minutes. REM latency was 75.5 minutes. There was a 19.7% of sleep time in REM. 6.7% in NREM1, 50.3% in NREM2 and 23.3% NREM3. There were 5 REM cycles identified during the sleep study. There were 103 episodes of arousal for an arousal index of 13 per hour. The patient spent 86% of the total sleep time in the supine position and 14% on the right side. 

Cardio Parameters: The average heart rate was 123 BPM during REM and 115 BPM during NREM sleep. There was no obstrutive or mixed apenas. There was 1 central apena that lasted 11.7 seconds. There was 1 central hypopneas which lasted 27 seconds. The oxygen levels for both was 95.9%. The respiratory disturbance index was 0.3. The obstructive index was 0. The average oxygen saturation was 97.9% during REM and NREM sleep. The average end tidal CO2 was 44 with a maximum end tidal CO2 of 51.6. There was 51.1% of the study time spent with and end tidal CO2 higher than 45 and <1% was spent with and end tidal CO2 higher than 50. 

Normal sleep study. 

MSLT 

The patient entered sleep during all 5 nap opportunities. Sleep latency for nap 1 was 3 minutes, for nap 2 it was 1 minute, for nap 3 it was 3 minutes, for nap 4 it was 1.5 minutes and for nap 5 it was 4.5 minutes. The average sleep latency was 2.6 minutes. REM sleep was noted during naps 2,3,4 and 5. 

Severe Excessive Daytime Sleepiness

My questions to all of you - 

They said heart rate was fine. They look high to me. They didn't explain what the whole CO2 means so I guess it is all good. Can anyone explain?

For the nap test they just said medication will probably help with the fatigue during the day. Does this results mean I have narcolepsy?

Thanks for any help



Hey there,

Well given you had a brain injury it complicates things a bit. But what I found after I had taken Desipramine for a few weeks I ended up reacting to it, it caused high blood pressure, and panic attacks, and fragmented my sleep to such a degree I was worse off after taking it then before (not to mention it changed my cataplexy trigger... I am still trying to correct the damage a year later).

BUT what I did find that helped me in regards to fatigue due to the highblood pressure was a beta blocker that my doc gave me (a two week supply) that helped me sleep a bit deeper, and I woke up a bit more relaxed as a result. I wish he had continued it for a month or more.

A possiblity for the excessive sleepiness might also be part of the event being suppressed (even though it probably isn't "bad" its just hidden from your consciousness). There is a book called "Energy Tapping for Trauma" that talks about a woman who developed a driving phobia after an accident due to part of the memory being suppressed. There is another book that might also be useful for you if its physical damage to your brain; "Change your Brain Change your Life" which is about SPECT scans of the brain that can show where there might be overactivity or underactivity and a more targeted medication can be given as a result.

In regards to Narcolepsy, by the looks of the sleep study and mine cut it pretty close, I would say no. Mainly the failure of the MSLT and not hitting REM at least twice (and there is a set time constraint for how quickly REM must occur after sleep onset... 8 minutes I believe).

I couldn't keep my eyes open long enough to do the eye rolling thing at the begining of each sleep test, I got snapped at by the technician each time (I forgot where I was darnit). To add insult to injury, I dropped into REM during the waking periods between and had my lunch delivered 4 times. I was a bit annoyed by this to the say the least. :P REM intrusion when walking to the grocery store sucks.

In regards to neuro-recovery, and regaining function, I am interested in your progress. Let me know. Best of luck getting it sorted out.

-Gary

#6 Rambler65

Rambler65

    Member

  • Members
  • 11 posts

Posted 13 January 2010 - 12:40 PM

Thanks for the replies. Started on 200mg of Provigil and I notice a difference but not a lot. Will give this some more time. See the doctor again in February so will stay on it at least til I see him. I seem to be eating more so maybe this will help in a way not intended.

They always told me I would have a chance of seizures after my head injury. They never said anything about narcolepsy.

Since I am so new to all this I don't really know what to ask him. Does this get worst with time? Since this seems to be from a head injury as my brain heals will this go away?