compsports: Introduction

[JanCarol]

Gosh CS I hope I didn't put you off - I don't know if any of these ideas / suggestions will help.  I was just hoping to add to your toolbox, if only one of these suggestions helped then we can all feel better.

 

I've seen you around elsewhere on SA, so I hope you are okay?

 

Sleep well, Jan

[compsports]

Hi Folks,

 

Sorry, I didn’t realize I had replies to this thread as I don’t have my profile enabled to alert me for various reasons.

 

Jan Carol, thanks for asking about me as your post was fine.   You did nothing wrong.  I am extremley disheartened about my situation as you will see why in a few minutes.

 

In a nutshell, about a year before I finished tapering, I started to suffer mysterious narcoleptic like sleep attacks that continue to this day and are getting worse which have caused a completely messed up sleep cycle.   As a result, while there is no doubt that my apnea diagnosis is legimate, until this other issue is resolved, it is going to be next to impossible to evaluate how well pap therapy is working.   That is why I will hold off having any surgery on my deviated septum for now although I am not ruling it out in the future.

 

Anyway, I am seeing a neurologist/sleep doc recommended by my ENT who also got great patient reviews at the end of this month for an evaluation.   To hopefully expedite matters, per the advice of the receptionist, I am keeping a sleep diary that will hopefully get his attention if I put in a neatly organized notebook.

 

I know self diagnosis isn’t always the wisest course of action but in doing research, I seem to strongly fit the pattern of irregular sleep wake disorder in which there is never a main period of wakefullness and sleep.   Unfortunately, the advice on light therapy is inconsistent  so hopefully, this doc can advise me as to how it might be helpful.

 

I have started experimenting on my own but yesterday, started feeling drugged after using it.   So who knows?

 

Regarding various comments, I have decided the only sleep remedy I will take is Temazepam and only if I have several bad nights in a row.   With an irregular sleep cycle, it is going to be next to impossible to evaluate how helpful any sleep remedy really is.   That is why I got so angry at previous doctors for suggesting meds when they weren’t even listening to my complaints about the narcoleptic like sleep attaks.

 

Concerning apnea being a scam, actually, the diagnosis is the result of the sleep tech scoring sleep breathing events based on indentifiable criteria.   The problem is the follow up care is horrible and is a major reason why the failure rate is high.   But that is different from it being a scam.

 

Eye mask so far has not worked.   Tried it Saturday night during a rare day when I didn’t fall asleep prematurely and only slept 3 hours which was consistent with previous attempts.

 

Yoga is a great suggestion for most people but not for someone who suffers narcoleptic like sleep attacks:)

 

Have suffered no adverse affects from Nasonex but it has only been marginally helpful.  If it had worked, I would had no problems taking it on at least for 6 months since it has been next to impossible to find any OTC or drug remedy that works for my sinus issues.   But I don’t regret tying it just to make sure I haven’t ruled out a conservative option vs. surgery.

 

That is about it for now.

 

CS

 

PS – Found a case history report of someone who suffered similar type issues to me after getting off of an antipsycotic.   The solution was to go back on another AP.   A big fat sigh.

[JanCarol]

Hey CS - I've been thinking about you.  My Mom and my Dad have "deviated septum."  My Dad had the surgery and it helped him - it seemed like he didn't catch and hold onto so many winter colds after he had it (though I must say that surgery didn't look at all "comfortable")

 

Mom just uses Breathe Right strips.  She swears by them.  She gave some to me - but I find they dilate the outer nostrils a mm or two, but do NOTHING for all the trouble INSIDE my sinuses - which is probably where you're coming from.

 

The narcolepsy is, pardon the pun, a DRAG!  So sorry to hear about that, I hope you can get some answers soon.

 

Take care,

 

Jan

[compsports]

Hi Jan,

 

Interestingly, cutting all the supplements greatly reduced the narcoleptic like sleep attacks until drinking hot chocolate in the evening.   I found I was able to exercise more without the drugged feelings afterwards.  Still had crappy sleep but I am optimistic that maybe I can finally stay awake longer in the evening and perhaps consolidate the sleep cycle so I am not doing the sleeping for a few hours, waking up for awhile, going back to sleep for a few hours routine.

 

Used a nasal extender with my mask last night and had a zero apnea index although unfortunately, it didn't help with sleep.   So who knows if the septoplasty would help or not.   See what ENT number two says who I am seeing next week for a 2nd opinion.  

 

CS

[JanCarol]

May I ask what supplements caused your problem?

 

I just read a study about Vitamin D (who knows, maybe I saw it here, but maybe not) that indicates levels higher than "normal range" are needed to help with sleep problems - with or without CPAP

http://www.vitamindwiki.com/Poor+sleep+and+lack+of+vitamin+D+-+Nov+2011

 

I just got hubby & myself tested to see where we stand - we've been on 5000 IU Vit D for awhile (2 years for me, 6 months for him) and we still struggle with sleep.  This article goes much much higher than that - AND we live in a country where the sun shines brightly much of the time.

 

Let us know what you make of your ENT and his opinions!

[compsports]

Hard to say which supplements are causing sleep problems because I still haven't yet established any type of correlation.   But since I did better with not having narcoleptic sleep attacks, for now, I will not take anything.

 

I am familiar with Dr. Gorminik but thanks for the link.   She acknowledged further studies are necessary but so far, seems to think that a tight range of 60 to 80 alleviates sleep apnea based on anecdotal evidence.   When I was last tested, I was at 60 which I reached by taking 3000IU per day.

 

When I tried 5000IU, I got a jaw pain that disappeared when I lowered the dose.   But I might try it with K2 at some point to see what happens since K2 is allegedly a necessary part of the equation.

 

So wow, you might need more than 5000IU.   Lots of luck in getting that sorted out.

[compsports]

May I ask what supplements caused your problem?

 

I just read a study about Vitamin D (who knows, maybe I saw it here, but maybe not) that indicates levels higher than "normal range" are needed to help with sleep problems - with or without CPAP

http://www.vitamindwiki.com/Poor+sleep+and+lack+of+vitamin+D+-+Nov+2011

 

I just got hubby & myself tested to see where we stand - we've been on 5000 IU Vit D for awhile (2 years for me, 6 months for him) and we still struggle with sleep.  This article goes much much higher than that - AND we live in a country where the sun shines brightly much of the time.

 

Let us know what you make of your ENT and his opinions!

JanCarol, I saw ENT2 for a 2nd opinion.  The good news is he would do the surgery without splints.   The bad news is he doesn't think a 23 hour admit to the hospital is necessary even though I have moderate sleep apnea which concerns me particularly if I would not be allowed to use the cpap for a week.   So I am seeing another ENT next week for a third opinion.  Very frustrating.

 

I don't think there is any disagreement that this would help my breathing greatly.  But no one will offer an opinion as to much it would help my sleep which is understandable although frustrating.

[compsports]

Saw an old neuropsych report several years ago in which I complained to the neuropsych about having narcoleptic like sleep attacks even though I doubt I have narcolepsy.  I was on a cocktail of 4 antidepressants.  Not joking.

 

Anyway if people recall, this has been an issue for me even though I have been off of psych meds for nearly 5 years.  I don't have proof obviously but it just seems like these meds did something to alter my circadian rhythm that I am having a hard time changing.  I am really at a loss.

 

CS

[Meimeiquest]

Hi CS, you have shown such tenacity in this horrible situation! I haven't looked into this much yet, but magnesium threonate is coming up as a form of magnesium that may help sleep as it is supposed to cross the blood brain barrier. But that is all I know.

 

I do think vitamin K2 is important with vitamin D supplementation. Homemade kefir is supposedly a good source, and has lots of other good stuff in it.

 

I started on a relatively-new-to-market nasal mask, you probably already know of it. Much more comfortable. Still sleeping the same but at least more comfy lying in bed . But I don't know if it would work with your sinus issues.

[compsports]

Hi CS, you have shown such tenacity in this horrible situation! I haven't looked into this much yet, but magnesium threonate is coming up as a form of magnesium that may help sleep as it is supposed to cross the blood brain barrier. But that is all I know.

 

I do think vitamin K2 is important with vitamin D supplementation. Homemade kefir is supposedly a good source, and has lots of other good stuff in it.

 

I started on a relatively-new-to-market nasal mask, you probably already know of it. Much more comfortable. Still sleeping the same but at least more comfy lying in bed . But I don't know if it would work with your sinus issues.

Hi Meime,

 

Trying the magnesium from Jigsaw Health Products but it doesn't seem to do much as far as sleep.   Not ready to give up on it yet since there is a 90 day money back guarantee but I am getting the feeling that mag products aren't the answer for my sleep.   But thanks for the recommendation of the mag threonate.

 

Am taking cod liver/butter oil that has K in it and definitely notice an improvement with my teeth interestingly.

 

Glad the mask is more comfortable.  What is it?  I do wear the Elan cloth nasal mask but I have to run my pressure higher than what was prescribed at the sleep study.  Sleep doc didn't like that.

[Meimeiquest]

It's Eson by Fisher and Paykel (sp?). The inner liner is much thicker than what I was using (Quatro) so it doesn't have to be as tight to seal. But I don't have nasal issues. What form of mg are you using? I take a mix, plus Epsom salts baths. But dr thought it might not still be enough as there is a lot of mg loss in the urine when someone is stressed and I still am having cortisol reactions in the a.m.

[Meimeiquest]

I just saw sleep dr and my apnea rate is 0.2/hr, on Quatro. Probably because I'm awake a lot of the time I'm on the machine

[compsports]

It's Eson by Fisher and Paykel (sp?). The inner liner is much thicker than what I was using (Quatro) so it doesn't have to be as tight to seal. But I don't have nasal issues. What form of mg are you using? I take a mix, plus Epsom salts baths. But dr thought it might not still be enough as there is a lot of mg loss in the urine when someone is stressed and I still am having cortisol reactions in the a.m.

I am up to 250mg.  Any more seems to make the situation worse.   Good idea about trying Epsom salt baths again.  Just have to be careful to start slow.

 

I will check out the Eson just out of curiosity.

[compsports]

I just saw sleep dr and my apnea rate is 0.2/hr, on Quatro. Probably because I'm awake a lot of the time I'm on the machine

Apnea rate is meaningless for me as I have gotten alot of zeros.   But had extremely broken and fragmented sleep.  Unfortunately, sleep docs focus solely on that and blow off any other complaints about sleep.

 

I hope your sleep improves.

[Meimeiquest]

I expect to be okay in the end. I'm tapering off inositol right now. When I am at a steady place my sleep isn't too bad. Also, if I had more time to give to trying to sleep I think I could do it, the "second sleep" thing. But I have to leave for work at 6:30 am. However, I know I am extremely blessed to be well enough to work, even if it isn't a neat and tidy process. My problems are tiny compared to yours. I have to give this new sleep dr., a neurologist, her props. She said, "I can't advise you on getting off your drugs, but as you have seen, these drugs all have side effects, and the less you can take, the better." Unlike the last, "Probably the reason it's so hard to get off them is that you need them." (Not reason I left him)

[compsports]

Wow, I wish your sleep doc could be cloned.  I am so happy you found her.

[Pugknows]

Your sleep journey is a tale of persistent courage, Comp. My circadian rhythm is all out of whack too and it never changes. Guess time will fix us eventually. ((hugs))

[compsports]

Your sleep journey is a tale of persistent courage, Comp. My circadian rhythm is all out of whack too and it never changes. Guess time will fix us eventually. ((hugs))

Sorry to hear you are in the bad circadian rhythm club Pug.   Can you describe your situation and what you have done to try to change things?  Just curious.

 

I have tried light therapy but unfortunately, fall asleep while sitting near the light lamp.  Kind of defeats the purpose.

[Pugknows]

I have tried melatonin a couple of months ago for three days and was able to push back the cortisol surges to 4:30am, rather than 3am, but that was short-lived, they're back yo 3am. I currently take magnesium 200mg at bedtime.

[Pugknows]

I wish the 3am cortisol wake up call would end. I think that would mark the end of this nightmare for me.

[compsports]

I hear your frustration Pug.  Unfortunately, melatonin has been one of the least effective sleep aids for me.   I just wish I knew what would end this bleeping nightmare be it nasal surgery or something else.

[JanCarol]

Yar, I've got to chime in on the melatonin.  It had too many side effects for me.  Headaches, disorientation - as bad as a psych med, for me.  Plus, it didn't make me sleep any better.  (Recall:  I'm severely delayed cycle sleep - but sometimes I think I'm just a spoilt child who doesn't WANNA go to bed. Waaah!), but when I do finally sleep, I sleep pretty well.  But not with melatonin.  Not for me.

[compsports]

Yar, I've got to chime in on the melatonin.  It had too many side effects for me.  Headaches, disorientation - as bad as a psych med, for me.  Plus, it didn't make me sleep any better.  (Recall:  I'm severely delayed cycle sleep - but sometimes I think I'm just a spoilt child who doesn't WANNA go to bed. Waaah!), but when I do finally sleep, I sleep pretty well.  But not with melatonin.  Not for me.

JC,

 

Having a delayed sleep cycle is not an issue of willpower.   Have to disagree you are spoiled child.

 

Yeah, I felt like melatonin was almost as bas as a psych med so I find your descrption right on target.   Sorry it didn't work for you.

[Pugknows]

Took very small dose of melatonin 2 days ago. Caused horrible anxiety and depression next day. Won't be doing that again. Threw the bottles in the trash.

[compsports]

Took very small dose of melatonin 2 days ago. Caused horrible anxiety and depression next day. Won't be doing that again. Threw the bottles in the trash.

Sorry to hear that.   Pretty much my experience as I have previously mentioned.

[compsports]

Well, this time, I am definitely going to have a septoplasty/turbinate reduction.   I saw ENT number 3 yesterday who was fantastic and am going to have it done with him.   He is also going to care of the collapsing nasal valves which no other ENT had addressed but it was clear from what he showed me, they were malfunctioning.

 

After I visited him, it was quite clear why I have struggled so much with pap therapy.  I am not expecting this to be the total answer as I am sure I have developed some horrible sleep habits that need work.   But without the necessary tools (which is optimal nasal breathing), I didn't stand a snowballs chance of succeeding.  It is too dam bad it took me this long to realize this but better late than never.

 

I am anticipating having it done late March or early April.  Want to allow time for a preop physical and to correct any unexpected problems that may occur.

 

Obviously nervous but I am very confident in my doctor and that makes such a huge difference.   

 

CS 

[JanCarol]

CS, I remember reading a psych study done in a prison.  In it, they determined that people who thought they were getting out soon, were naturally, quite happy  The other two groups were:  those who were going to be in forever with no parole, and those who didn't know how long before they would get out.  The surprise was, those who didn't know how long before they would get out, with possible paroles, and maybe not paroles - had the most anxiety of all the groups.  Those who knew they would be in forever, had less anxiety than those who would be getting out soon!  Because they knew what the score was, more than any of the others.

 

The point being, uncertainty causes more stress than even knowing the worst.  I think your new doctor (ENT#3) relieved a good deal of uncertainty for you.  There is still the procedure to go through, and I'm sure you will be uncomfortable for awhile after that (my Dad's surgery was simpler, and he had about 3 weeks of discomfort after his).  BUT you know more about the shape of your sinuses than ever before, and you have a solution that will help.

 

You sound very realistic in that you know you will have to do some work, too - you're not just putting your whole fate in this one doc.  But it's good to see that you have high hopes.  

And good onya for PERSISTING until you got to a treatment you could accept!

[compsports]

Thanks JanCarol for being so supportive.   Day is March 19th.

 

Regarding uncertainly causing more anxiety, that is why I am insisting on meeting with an anesthesiologist who will most likely do my surgery so I know what meds are going to be used ahead of time.   Fortunately, I found out my doctor can request a particular person so I will make an appointment to see him so hopefully, he has an idea whom might be a good match.

 

CS

[compsports]

As an FYI, I have been experimenting with various supplements to see if what I feel better on vs. what seems to make things worse.   So today, I just take a 500/250 mag/cal supplement and seem to have more energy including being able to do the laundry and revise my questions for my ENT visit tomorrow.

 

Unfortunately, when it wore off, my BP and HR skyrocketed so it looks like the only supplement I may be taking is vitamin D as everything else seems to negatively effect me.   So frustrating.

 

Do I simply need to start very slowly with mag because of this adverse reaction?  How am I going enough calcium if I don't take a supplement?

 

Thanks for listening.

[Meimeiquest]

What has happened when you take magnesium alone?

[compsports]

I think the same thing happens although I am not 100% sure.   I might give it a try when I return from my ENT appointment and take a very small dose to see what happens.

[compsports]

Blood pressure and hr were high at ENTs office.  Have appointment to see cardiologist on Monday as he wants clearance which is understandable since I had seen her in the past for other issues.

 

Tried a very small amount of magnesium which seemed to have a small but positive effect.  

 

But obviously, with surgery being on 3/19, I am going to probably need a med to get it down quickly.   Unfortunately, I don't think this is White Coat hypertension.

[Petunia]

Hi CS

 

I moved some of your recent posts from symptoms to your introduction thread here because they are related to your own situation specifically.

 

I'm sorry you've been having problems with your BP and HR.  We recommend taking magnesium alone, rather than as a mixed supplement with calcium, it works better for its calming effect that way.

[compsports]

Well folks, I finally had the septoplasty on Thursday, March 19.   Initially, did very well with minimal pain and didn't have any nausea.   Also, I apparently woke up very quickly in the recovery room according to one of the nurses.  

 

Thank god for technology because due to shortage of rooms, I waited about 5.5 hours for one.   So I was emailing folks on my cell phone to let them know I was ok and also checking up on NCAA tournament basketball scores.

 

Night at hospital was very uneventful although I didn't sleep very well.   No surprise there.

 

Packing was removed the next day which made a huge difference even with the splints in my nose which come out next Wednesday.   Unfortunately, having to do nasal rinsing and use antibiotic ointment has clogged things up again but that will hopefully change next week.

 

Last night, I guess my luck ran out as I vomited and of course, was scared to death of blowing out my incisions which didn't occur.   But feeling so much better that I ate a piece of an Easter chocolate egg that someone had given me.   Strangely, I was craving chocolate big time.  Not sure what that was about.

 

Oh, I forgot to mention the big news.   Prior to the surgery, surgeon agreed I didn't have to take antibiotics post operatively unless I developed an infection.   That is such a a relief as the thought of putting any medication in my throat and dealing with potential adverse reactions wasn't very appealing.  He definitely understands I am med sensitive and so did the anesthesiologist.

 

He agreed with my request to skip the Versed.   Definitely not needed because as soon as I was placed on the OR table, I was out very quickly with the Propapol.

 

Blood Pressure - About 152/90 on day of surgery even with Norvasc.  But next day, when I asked, it was 117/71 which is as low as it has every been and that was without having taken the medication which I never took.

 

When I checked this morning, I am estimating it was around 124/75 without medication.   So I am not messing with success but will contact my cardiologist on Monday to keep her in the loop.   I still need to sit down with her to go over the stress test to see if there was an issue with exercised induced hypertension and what that means in the scheme of things.    But right, obviously, exercise isn't an issue.

[cymbaltawithdrawal5600]

So this all sounds like wonderful news!

 

This happened on Thursday, I'm assuming you can't use the CPAP until you are cleared by the doc?

 

Have you slept at all?

[compsports]

So this all sounds like wonderful news!

 

This happened on Thursday, I'm assuming you can't use the CPAP until you are cleared by the doc?

 

Have you slept at all?

Surgeon said I could wear a full face mask that doesn't touch the nasal area but I am finding it impossible to stop leaks even at lower pressures without massively tightening the mask which would do that and obviously, that can't happen.   So I have slept in an upright position without it.   Not very well but I wasn't expecting to to be honest.

 

I may try sleeping in an upright chair tonight to see if maybe that would help as sometimes just a change in position can do the trick.

 

The true test of sleep will be when he clears me to wear the nasal cloth mask I have been wearing since I will also be 7 days post op with hopefully the expected improvements.

 

Anyway, to answer your question, I have slept off and on but haven't had a solid block of sleep.   But again, not surprising.