I don't know what to do

Sparchitect · Post by **Sparchitect** » Fri Jul 06, 2007 10:48 pm

Unless you've exhausted the possibilities, Gene's on the right note. A couple weeks ago I thought I was two nights away from throwing my hands up in the air and resorting to my preferred way to fix things (power tools). Instead, the list of possible culprits is long and extremely feasible to treat. My doctor's never told me about them, offered to treat them, or even seemed interested in looking into why I'm complaining of more issues than what he can derive from the data on the machine's CPU. It doesn't mean it's hopeless - it means that despite all logic, the answer is determinable, definable, and whence so, reversible.

jennmary · Post by **jennmary** » Fri Jul 06, 2007 11:27 pm

I wish there was some way I could help you. I was at the end of my rope also for a while. Still sometimes feel like I am getting close.

I swallowed a bottle of prescription Inderal when I was 18.....luckily I just passed out for 12 hours.

I cried when the doctor told me I had sleep apnea....because it meant I wasnt crazy. I am a single mother to a 2 year old girl. Sometimes the only thing that kept me from crossing the line was the thought that she had no one else in this world. I had to grab hold of that thought. I had to picture her alone in foster care. I had to make myself think about it every time a sudden urge to cross the yellow line on the freeway came to me. This is not to say I was sad all the time.....no the anger was worse. I could be happy then yelling and flying off the handle in less that a second. I was spending money like crazy. Before I had Faith it was drinking, then after it was spending and food. I was in a downward spiral that I couldnt control. My family started telling me I was bi-polar, my therapist agreed. My GP is incredible...and he told me I wasnt depressed or crazy, I was just tired. He offered me a lifeline in a desperate sea of despair.

I know what it is like to get to rock bottom. I spend the night in psych ward when I was 21 because a boyfriend pissed me off and I held a knife to my wrist while telling him he wouldnt even care if I sliced my wrist.....and neither would I. That was a fun ambulance ride.....after the cops threatened to handcuff me and drag me out if I didnt go willingly. Wanna hear the funny part of this story......the psych there talked to me and told me I wasnt crazy, that I needed to sleep and gave me sleeping pills. It would still be 5 years until my diagnosis. I have lost almost all of my friends, and most of my family is so fed up with my "laziness" that they cant stand to be around me. My sister doesnt want me in her wedding because the dresses are sleeveless and I have let myself get so fat that I shouldnt wear one. There are still moments when I cant breath because of the weight of the hurt and emptiness that I feel. I have a long sordid life story.....but I think I could live with it if I wasnt so tired all the time.

I am fighting every day to get my life back......because I know it has to get better. I know that from the bottom there is only one way to go.....straight up. I dont think it happens overnight. But nothing worth having does. I KNOW that things will get better for you. Dont give up. Know that there are people here who will do everything they can to pull you through to the other side. Some of us have been there too. Some of us still might be. Take care and I will keep you in my thoughts.

John_M · Post by **John_M** » Fri Jul 06, 2007 11:43 pm

jennmary wrote:I wish there was some way I could help you.
....
I am fighting every day to get my life back......because I know it has to get better. I know that from the bottom there is only one way to go.....straight up. I dont think it happens overnight. But nothing worth having does. I KNOW that things will get better for you. Dont give up. Know that there are people here who will do everything they can to pull you through to the other side. Some of us have been there too. Some of us still might be. Take care and I will keep you in my thoughts.

Thanks Jenmary. That helped me feel I am not alone. I am doing tiredness and bipolar too.

I hope it helps Josh as well.

John M

Elle · Post by **Elle** » Sat Jul 07, 2007 1:17 am

socknitster,
I was going to say "I wish you were my mom" and then I remembered i had a wonderful mom who no one can replace. ...so I will just say, Your son is lucky to have you for a mom.

josh · Post by **josh** » Sat Jul 07, 2007 9:02 am

I have an update...

I went to see my psychiatrist last night, and for the first time I was able to really open up to him...perhaps because I knew that if I kept going I would either end of in jail or be dead.

I explained to him everything that has been going on, including a lot of stuff that I forget, the fact that I go into a fit of rage that is uncontrollable and very sudden, and there is nothing I can do about it until I do something drastic, and after that point I realize I did something wrong...and then I get tired, so very very tired. I also explained all of the triggers for this state, it can be when I am losing at a video game, when my kids talk back to me, when my wife talks back to me, when a driver does something stupid, it can be anything really. I even told him of the time that I threw hot macaroni and cheese at my wifes hair one time...after I did it I immediately realized I did something wrong and started crying and wanting to die.

I thought that he wouldn't understand, and that I am nuts or unique or something...but then he said that it is explainable, and not not normal...so he presribed me depakote and ativan on top of my aricept and dexedrine. The depakote is supposed to control bi-polarisim, to keep me down a few notches. The ativan is supposed to sedate me from doing something drastic, hence only take it when needed.

I took both this morning, my wife left me alone with the kids and went to work. So far I have spent the morning cleaning up the house...and there have been no ill effects yet. Of course he told me the depakote will take 5 days to enter my bloodstream...so maybe the ativan is helping. I don't know...but its good so far.

I also mentioned to him that I had wanted to go to the hospital...but thought it would do no good because they would just release me, and he agreed! He said they would not keep me because I do not want to kill myself...its a catch twenty two, when I am out of control I can easily be suicidal, but most of the time I am not, and I really don't want to hurt myself.

I too have driven a lot of people away from me, and i have a hard time making friends, but I wish I had them at the same time. Again it goes back to that feeling of being lonely/empty as I have for most of my life, despite the fact I have a wife and 2 kids now. If things continue to go the way they were going, I am sure she would leave me or I would leave her. And I have a feeling of resent for my son because he is so needy and requires so much attention (he is 1 year old). I mean I love him, but at the same time I can't stand him...because I don't have the capacity to care for him or tend to his every need. If I had my choice I wouldn't have had a second child, in fact we weren't even trying, she was on the pill...and voila...and I say that because I new I had sleep apnea, and that it was affecting me. But I can't change the past...

And I too will spend money...almost uncontrollably, as if to make me feel better. And I am not cheap...I love technology...and I always buy something on a whim...on the spot. Even that I think is connected to sleep apnea...I am too tired to think about the consequences, although fortunately my credit history now is okay, but my debt is pretty high.

As far as my machine goes, yes I have a smart card and the software, but I don't know how much to believe it. It says on average my AHI is 5, every night. It is in auto from 7-15, I can't set it above 15 because it is too much pressure for me. Usually it runs about 10-11. I have a theory, my airway is no bigger than a coffee stirrer...at 2-3mm in width. So a very large pressure would have to be present to keep that open I would think, but I don't know. I do know that Roger who had an MMA had the exact same anatomy as me, his airway too was extremely small. I believe even he had problems with cpap.

Thats not to say it completely doesn't work for me, because it does a little...I mean I cannot sleep with out it, I am at 100% utilization. If I do sleep with out it, the headaches begin immediately, and I feel even more tired than I normally do.

Yes all of my hopes sit entirely on this surgery, and I know that a lot of people question it and say that they wouldn't do it, but I am not those people. I have thought about it for well over a year now, and any more thinking over the next month will not change my mind. The bottom line is that I need a bigger airway, and if I don't get it, who knows what will be in store for my life. I have been having all different kinds of depression, anxiety, and now even bi-polar symptoms in conjunction with my lifelong bout of being tired, and I am convinced they are connected. Why else would 95% of the medications prescribed to me not work?

If anyone is curious as to how old I am, I am very young...at a mere 28 years old. That is the other reason I am pursuing this...I may potentially have a very long life to live, and I want to eliminate any conditions I have right now. Sleep apnea ended my navy career, it has almost ended my marriage on many occasions and has removed all of my friends. I am not afraid of being cut open...again...for this surgery. It is my only hope apart from getting a hole in my throat which believe me I have considered on numerous occasions. I don't want me being tired to be an excuse any more...I want to wake up!! I am also getting this surgery done because if it works, I am another data point...a success...proof that there are alternatives. And don't get me wrong, I am scared, but I am so tired that I don't even think about it.

I am at the point at my life now where practically nothing is private, I seek out help and assistance from anyone as far as what I should do because I am tired. When people tell me they think they have sleep apnea...whoa hold the horses...I tell them I strongly recommend they see a sleep lab and get tested. I think everyone should get tested at a certain age...because it can be so detrimental.

Anyhow, this is probably a long post...I am sorry if I didn't address everyones post, and I know that some people sent me some pm's (I did read them, thank you)...I am not very good at replying to them, so please don't take it personally. I want to thank everyone for posting, it was brave and good to do something like that...these are very personal stories. But if we don't talk about the things that sleep apnea is doing to us we will not know how to deal with them, and we will feel alone, and bad things may happen. I am not saying I am cured right now from the way I was feeling the other day, but I am feeling better right now, which one day at a time is very important. And thank you for listening to me...

If anyone wants to im me, you can reach me at ahhhh3 on AIM.

socknitster · Post by **socknitster** » Sat Jul 07, 2007 12:16 pm

I'm glad you had a good talk with your psych. It is a step in the right direction. I hope the wait for the surgery continues to go well.

Jen

Sparchitect · Post by **Sparchitect** » Sun Jul 08, 2007 12:04 pm

Ativan will be a good choice to keep you 'mellowed'. It can worsen apnea for some, but the variable range on your machine may very-well handle it, so I guess take this only as information, not alarm.

As far as the BiPolar symptoms go, both yourself and Jennmary sound like textbook examples of what happens when the human body is deprived of sleep - it destabilizes to a point where very small adversities can trigger hypomania. Whether you're both BiPolar and just aggravating it with OSA, or perfectly normal folks with physiologies reacting to the lack of rest from OSA in a manner that cloaks itself as BPD-II is a chicken-or-egg question that will be answered when the OSA is managed and proper sleep is restored.

Good luck to you all... I'm floating in the same shark-ravaged boat and sometimes still get the willies when I look over and think I see Richard Dreyfus next to me hehe...

John_M · Post by **John_M** » Sun Jul 08, 2007 4:12 pm

Sparchitect wrote:Ativan will be a good choice to keep you 'mellowed'. It can worsen apnea for some, but the variable range on your machine may very-well handle it, so I guess take this only as information, not alarm.

As far as the BiPolar symptoms go, both yourself and Jennmary sound like textbook examples of what happens when the human body is deprived of sleep - it destabilizes to a point where very small adversities can trigger hypomania. Whether you're both BiPolar and just aggravating it with OSA, or perfectly normal folks with physiologies reacting to the lack of rest from OSA in a manner that cloaks itself as BPD-II is a chicken-or-egg question that will be answered when the OSA is managed and proper sleep is restored.

Good luck to you all... I'm floating in the same shark-ravaged boat and sometimes still get the willies when I look over and think I see Richard Dreyfus next to me hehe...

Me too, I have been doing bipolar for thirty years and am wondering if my trusty M-series APAP will cure me. All I know is that my shrink has been reducing my Trileptal and its now 1/2 of what it was when I started CPAP.

I am exploring connections between Sleep Apnea and bipolar at http://seedwiki.com/wiki/dreamsharing/p ... Id=1005745. Feel free to join in.

I a real scared about taking Ativan. I do addictions as well (as a lot of us bipolars do) and am frightened of getting hooked on it. I take similar drugs occasionally but only when I have to.

John M

Sparchitect · Post by **Sparchitect** » Mon Jul 09, 2007 12:41 am

The connection between mood disorders and OSA is disturbing and needs every bit of light shon on it that is possible.

If you're doing OK on less Trilep and can see CPAP as being what's helping, man, it's good to hear!

If addictions are a concern then yes, by all means be cautious of Ativan, as well as any other minor-tranquilizers... but much like coping with mood disorders, being cognizant of the possibilities puts you already leaps and bounds closer to being able to stop the ball before it starts rolling.

josh · Post by **josh** » Tue Jul 10, 2007 5:50 am

I am on day 4 of my meds now, and I really don't feel different, maybe a little slower. But I have also watched my kids twice in those two days by myself with no ill effects. I did get stuck yesterday at work however with my boss screaming (or thats what it felt like) at me to do something I really had no control over, and that made me frustrated and I had the urge to quit. But I resisted it and moved on.

At any rate, I have just a mere 4.5 weeks to my next surgery.

I have also been in contract with a gentleman that has had the sugery, and he has been confirming my fears about cpap therapy (for me). He too complained that he could not get it below 5, and felt terrible. Coincidence? I think not...or I hope not. Because for his surgery, he has been cpap free for 2 years now, and feeling better than ever. That's what I want. I just need to be stable enough to get there.

What I would give for a good nights rest...

socknitster · Post by **socknitster** » Tue Jul 10, 2007 9:44 am

Josh,

He too complained that he could not get it below 5, and felt terrible

The problem is that with cpap you can't get your AHI under 5? Is that what you mean? Now I can totally see your frustration and why you are so tired!

So, the surgery cured him and he doesn't even need cpap anymore? Wow, that is impressive.

Have you looked into oral appliances like TAP, or is the problem your tiny airway. I think I remember you saying it is very small. What exactly does the ent say the problem is: tonsils, tongue, palate?

Just curious. I like to compare notes. I've been told I have huge tonsils and a huge tongue. I'm having the tonsils out at the end of this month but am reluctant to do more than that.

Supposedly my palate is nicely formed but i have a severe underbite and huge tongue and the underbite makes the huge tongue problem ten times worse. They want to break my jaw and bring it forward (oral surgeon) but I'm afraid of the long term consequences to my teeth. Just getting fillings can sometimes set my bite out of whack enough to cause some headaches and jaw pain. I can't imagine this surgery, followed by jaw wired shut for goodness knows how long, followed by wearing braces for a year or more. I'm only 35, though, so it is tempting if it could be successful, ya know?

I'd like to hear more about your anatomical issues, just to compare.

jen

jennmary · Post by **jennmary** » Wed Jul 11, 2007 12:37 am

Let me know how the tonsil removal goes for you Jen. We are still going back and forth on mine. I want to wait until the end of the year when I have more time off saved for work....that way I can still get paid when I am recovering. Dr wants them done ASAP. I have what they call cryptic tonsils as well as them being huge and almost touching. I get about 8 tonsil infections a year. We are hoping to end that cycle and hopefully help some of the apnea as well. I know it wont cure it...but a pressure reduction is always nice, and who knows? Maybe that combined with weight loss and other therapy might get me off CPAP. I know the chances a million to one...but you never know.

Just keep us updated on how that goes.

Josh.....I am so glad that the meds seem to be having even a small effect. I know the main reason I finally got tested for SA was because I was snapping at my 2 year old daughter for no reason. I cried when I was talking to the dr about it....because as much as I hated myself for it I couldnt stop. I felt like a pressure cooker inside. I seem to be getting better day by day. I hope the surgery works for you. I hope that after having it we read about how good it feels to sleep. That would be great.
You know that if you have a down day you can always come back and vent. And dont worry.....my boss makes me want to slap her daily. Sometimes I have to excuse myself to the bathroom when the urge gets too strong.

josh · Post by **josh** » Wed Jul 11, 2007 5:36 am

Jen,

Yes I cannot get my AHI below 5...well sometimes it is as low as 4.9, but who's counting?

And yes that is correct, the surgery did cure him and he doesn't need cpap any more. His blog is at http://www.robotics.com/mma

I have not looked into oral appliances, they seem to do me no good. The UPPP and deviated septum I had done made my OSA worse from an AHI of 37 to an AHI of 56. Cpap has never given me relief over the 2+ years, except it got rid of my headaches.

My airway is about 2~3mm in width, no bigger than a coffee stirrer. I went to an ENT at a teaching hospital (Lahey Clinic, supposed to be one of the best in New England), and he said he could do radio stuff, shrink my tongue, etc, but all of that would just reduce my apnea by about 5. (From 56). So he referred me to my plastic surgeon who wants to move both of my jaws forward 10mm (about 1/2 inch) and my tongue forward was well, and that has a 75-85% chance to cure me. There is some debate on what the word cure means, if you look it up it simply means a 50% reduction in apnea events. But I am trying to be optimistic comparing myself to Roger's blog.

My doctors told me my jaw will only be wired shut until I wake up from the surgery...as this is typical case. Some go longer...but we'll see.

And I am 28...(at 130lbs soaking wet) it would do leaps and bounds for me if it was successful.

Good luck with your situation, normally though the path is the doctors have to take out the tonsils first before they do anything else, and that has a 50% success rate.

Thanks jenmary for the comments...I agree with you 100%. It is downright scary! I can end up in jail, dead, or alone!! And I am not a monster...I am just tired. I am on day 5 now of my meds, the depakote is supposed to kick in now but we shall see. I have a feeling it won't work, but I have to be optimistic. At least hold off for another 4 weeks. The root cause is being tired, and learning how to deal with it. After I have an episode I just want to sleep...if I could put myself to sleep before the episode, I would be all set. I am so afraid I am going to lose my good job because of my sleep apnea...there should be some sort of protection against that!! I mean I don't mean to act this way...

Anyhow I told my boss off yesterday and he took me out to lunch...weird, right? I don't know...I just need to sleep. I'm sure I keep saying that. But that is the safest thing for me. Anyway, off to work I go! Maybe I'll take a nap...

Cheers,
Josh

socknitster · Post by **socknitster** » Wed Jul 11, 2007 7:21 am

Josh,

I don't know why I just assumed you were waiting for UPPP, I didn't know you already had done that.

So, the surgery you are contemplating is the very one they want to do to me. I will be eagerly awaiting to hear how you do. And it is reassuring to hear the jaw isn't wired shut for long. I know someone who had a similar surgery done as a child and it sounded far worse. They must have improved their techniques since then!

So, do you have a severe underbite? That is what I have.

Being so young with your whole life ahead of you, i will pray that you find relief from your suffering.

Keep in touch, Josh, and like Jennmary said, come back and vent if you need to!

Jen

josh · Post by **josh** » Tue Jul 24, 2007 8:06 am

Ha! I hate this! I blew up yesterday at someone at work (shouted, swore, almost flipped out)...it was terrible! I could feel my body shaking, they told me to calm down, but I was soo infuriated that it was very very hard to control. Fortunately though they were understanding today...

2 weeks 2 days...this better work...

I don't know what to do

Me too. I want in the boat too.