compsports: Introduction

[cymbaltawithdrawal5600]

Ok, so the swelling has not gone down yet so you don't know if the cleared nasal passages are going to help yet, right?

 

You'll still have to use the CPAP though? No chance of stopping it I take it....

[compsports]

Ok, so the swelling has not gone down yet so you don't know if the cleared nasal passages are going to help yet, right?

 

You'll still have to use the CPAP though? No chance of stopping it I take it....

Actually, I misspoke in my previous post.   It may take several weeks for the swelling to go down as once the splints are removed,  I may feel temporary relief before the sinuses swell up again.

 

Chances of getting to stop cpap are quite slim which is fine with me as long as I can stay asleep on the machine and get good quality sleep.   The surgeon's hope which I think is a very reasonable one was that my apnea index would decrease from moderate to mild and that I could lower the pressure to make things more tolerable.

[compsports]

Didn't realize it has been so long since I updated this thread.   Unfortunately, the nasal surgery didn't help me get better sleep on the machine.   Even though there is no doubt I have a wider nasal passage, I am still very stuffy.  Nasal rinsing with alcolol seems to work the best so I will give that a shot for now.  Using the regular rinse packets just makes things worse.

 

Working with a new sleep doctor who is trying to sort things out whom I like a lot.  By the way, somehow I had previously disclosed my psych med history to his office (can't remember how that happened) and initially I had the "Oh sh-t" reaction.   But I was quite candid with him about the issues as I felt now was the time to see if he was worth working with or not.  Not sure if he agreed with me on every issue but he seemed willing to listen and that is all I can really ask.  

 

Obviously, I am quite leery because of the horrible experience I had with a sleep doctor who initially seemed fine and wasn't and tried to bully me into seeing a psychiatrist and taking Trazadone for sleep.   But what I like about this guy is he seems to recognize there are no easy answers which I think is a good sign.

 

Anyway, I was very tempted to try the Fisher Wallace Product because my sleep seemed to be getting worse and I was desperate.   But after careful consideration, I need to hang tight and work through the process with the new sleep doctor.

 

I did start trying light therapy to see if that could help with my wanting to fall asleep prematurely after dinner and I see some signs it might be helpful.  However, seemed to make my sleep more erratic last night which I understand can be common with light therapy initially.   But because it also helps greatly with mood, I will continue with it.

 

Game plan is to try a new mask the nice daytime sleep tech fitted me with.  Have sleep study at end of August to see where things stand and have fu visit with sleep doctor in September.  Oh and I forgot to mention, he is having me keep sleep logs which I have been diligent about keeping up to date.   Pretty pathetic sleep pattern but what the heck.

 

Finally, I will be brutally honest and state that I am beginning to feel I need to explore other alternatives to pap therapy such as a dental device or surgery.  However, I will based that decision on the results of the sleep study and in consult with the sleep doctor.

[AliG]

 How's the "withdrawal" going, C. S. ?  Or is it "sleep" now ?   or both ?    Either way, good luck.   It's good to hear from you. 

[compsports]

 How's the "withdrawal" going, C. S. ?  Or is it "sleep" now ?   or both ?    Either way, good luck.   It's good to hear from you. 

Thanks for asking AliG.   I am dealing with sleep issues.   I blame psychiatry for this.

[Meimeiquest]

CS, I am so glad you have found someone who seems awake at the wheel. Have you ever looked into the possibility of "adrenal fatigue" from all this sleep deprivation. My doctor says it can be sort of an inversion of the normal cortisol curve where you see levels that are abnormally low in the evening and then too high in the night. The Adrenal Reset Diet by Christianson (about much more than diet) discusses it and it's treatment. I know this probably isn't it, but I just so wish for you to be able to get to the bottom of this.

[compsports]

CS, I am so glad you have found someone who seems awake at the wheel. Have you ever looked into the possibility of "adrenal fatigue" from all this sleep deprivation. My doctor says it can be sort of an inversion of the normal cortisol curve where you see levels that are abnormally low in the evening and then too high in the night. The Adrenal Reset Diet by Christianson (about much more than diet) discusses it and it's treatment. I know this probably isn't it, but I just so wish for you to be able to get to the bottom of this.

Thanks Meime, I will look at the book and probably buy it.  Nothing to lose.

 

Yeah, I want to get to the bottom too.   Light therapy isn't the answer unfortunately.

[Adagiooo]

CS, you have been working so hard for so long to beat this problem. You seem to have a "never give up" attitude and that's admirable. Your keep trying different things, something is bound to work. Keep your chin up. There IS a solution. Peace and hopefully some restful sleep to you.

[freespirit]

Hi CS,

 

I read through most of your thread yesterday. You have really been through it with the sleep issue. I'm sorry you haven't yet found a good solution to things and hope that something will present itself soon. 

 

I had bad insomnia for decades before starting on Remeron..so I have some idea of how it is to be sleep-deprived over a long term.

 

What time of day were you trying the light therapy? And for how long? I was using a light long before wd and found using it in the evening in the winter did help in staying awake to a more reasonable time and not waking as early. I'm not using mine over the summer, but the problem seems to be presenting again..so maybe will go back to doing it slowly again.

 

I think you mentioned blood sugar as another possible problem for you during the night. Just wondering how that's going for you. I have diabetes, but in a word, my blood sugar has been wacky through wd...totally unexplained lows, more than highs. Every time I think it's leveling out, I'll go through another round of it.

 

Again, I hope you can find your way to some better rest.

[compsports]

Hi CS,

 

I read through most of your thread yesterday. You have really been through it with the sleep issue. I'm sorry you haven't yet found a good solution to things and hope that something will present itself soon. 

 

I had bad insomnia for decades before starting on Remeron..so I have some idea of how it is to be sleep-deprived over a long term.

 

What time of day were you trying the light therapy? And for how long? I was using a light long before wd and found using it in the evening in the winter did help in staying awake to a more reasonable time and not waking as early. I'm not using mine over the summer, but the problem seems to be presenting again..so maybe will go back to doing it slowly again.

 

I think you mentioned blood sugar as another possible problem for you during the night. Just wondering how that's going for you. I have diabetes, but in a word, my blood sugar has been wacky through wd...totally unexplained lows, more than highs. Every time I think it's leveling out, I'll go through another round of it.

 

Again, I hope you can find your way to some better rest.

Unfortunately FS, using light therapy in the evening puts me to sleep.   New sleep doc might have me try it in the late afternoon when we meet for a follow up in September.

 

I was trying it 3 times a day for just a few days.   When it seemed to make things worse, I saw no point in continuing.

 

Haven't been monitoring BS that much.  Just adds too much stress and I just think my issues are complex.

[Meimeiquest]

In the past what have your blood sugar issues been like? It's my fasting blood sugar that is problematic, that is why the doc said he thinks it is caused by a cortisol problem.

[compsports]

In the past what have your blood sugar issues been like? It's my fasting blood sugar that is problematic, that is why the doc said he thinks it is caused by a cortisol problem.

Fasting blood sugar has never gotten higher than the mid 90s and many times is in the high 80s. 

 

But when I had the sleep attacks after dinner and have taken it, it has never been above mid 90s.   That is why while I don't think my metabolic issues are completely normal (high spikes from junk food), I don't think this is the main problem.

[AliG]

 Do you believe the "drugs' has caused this problem, C.S. ?? 

[compsports]

 Do you believe the "drugs' has caused this problem, C.S. ?? 

Yeah, I do regarding the narcoleptic like attacks and the insomnia even though I don't have any proof.    Psych meds have been known to do all sorts of strange things, including messing up people's sleep cycles for a very long time.  Just look on the benzo buddies boards of all the people who continue to suffer from insomnia.

 

I don't think they caused the sleep apnea although being on them definitely didn't help matters.   But I have a very strong family history of sleep apnea as both parents definitely showed signs of having it and a sibling also has it so that is why I feel I can't blame the meds in this case. 

[AliG]

 They've certainly messed up my "sleep cycle". I can't take it anymore . I can't live any sort of normal life, while  I'm up all night, every night. Night, after night, after night.!! It's insane .  We don't have "proof" as such, but I know for sure, it's the drugs !    

[compsports]

 They've certainly messed up my "sleep cycle". I can't take it anymore . I can't live any sort of normal life, while  I'm up all night, every night. Night, after night, after night.!! It's insane .  We don't have "proof" as such, but I know for sure, it's the drugs !    

I am sorry about your situation AliG.   

 

It definitely stinks to high heaven.

[freespirit]

Unfortunately FS, using light therapy in the evening puts me to sleep.   New sleep doc might have me try it in the late afternoon when we meet for a follow up in September.

 

I was trying it 3 times a day for just a few days.   When it seemed to make things worse, I saw no point in continuing.

 

Haven't been monitoring BS that much.  Just adds too much stress and I just think my issues are complex.

 

 

I get it about the BS monitoring...it can become sort of obsessive I find, if I let it. The thing is, the monitoring only gives a snapshot anyway. There's no way of knowing what's happening the majority of the time, except with continuous monitoring, which is expensive and usually just available to people with type 1 diabetes who are on an insulin pump. And, the checking of BS doesn't tell you what's causing the highs or lows.

 

I ended up using the light therapy right before bed. That defies logic in so many ways. But, like you, it made me sleepy and I slept better through the night that way. That was an accidental find, where I forgot to use it one evening around dinnertime...and didn't want to just skip an evening...I put in on and went to bed about 20 minutes later.

 

I'm hoping the sleep doc can help you find something that really works. Take care.

[compsports]

Sorry FS, I didn't see your post until now.

 

Glad the light therapy is helping you.   I tried it again last night at 7pm and it caused me to feel so drugged, I fell asleep prematurely and once again, had a very messed up sleep cycle.    Very frustrating.

 

May just wait until seeing sleep doc in a few weeks to see what he says.

[freespirit]

I sincerely hope for you that you can find something to help you, whether through the sleep doc, or some other source. Wishing you all the best.

 

Everything keeps changing, so I don't know if using the light in the evening will work again. For the moment, I'm holding where things are and just living with the sleep cycle as it is. To me, there's a fine line between responding to certain symptoms and trying to fix. I get myself into trouble when I fall into fixing mode.

[compsports]

After careful thought, I have decided to look into getting disability.   Anyway, I was advised by a law firm that handles these cases that if I have cognitive impairment which I feel I have for many reason, I need a neuropsych evaluation as proof.   Of course, the thought of dealing with a mental health professional does not make me happy but I feel I have no choice.

 

Anyway, I found someone who seems to only deal with TBI issues that might be a good bet.  Of course, it is hard to tell but does anyone have suggestions for screening this guy to make sure he at least would be tolerable.

 

Someone else seemed like a possibility but I am suspicious because she covers every mental health issue known to humankind.

 

Just so folks know, I was diagnosed with LD before I ever touched a crumb of psych meds and I feel my sleep issues have greatly worsened my cognitive impairment from the LD.   Don't know that would effect my case but without the evaluation, I apparently have no chance of finding out.

 

Interestingly, this firm does not recommend providers to see which I see as a good and bad thing for various reasons.

 

CS

[manymoretodays]

What is LD?  If you don't mind........

 

Back in the day........when I got approved for disability...........after 3 denials and prior to the "administrative hearing"...........the state actually assigned me to psychologist of their choosing for evaluation.  It was a grueling exam.........many hours and many tests.    I also only engaged with the law firm prior to the administrative hearing.  This was many years ago though........and I think things have changed a bit.

 

Have you been able to keep up a work record and income?  If you don't mind..........  At the point that mine was granted I was only a few years out of professional paid work.

 

Oh......and shoot.........I had vast quantities of medical records as well at that point.  I was told that helped, as well as the judge that administrated, etc.

 

No real great suggestions for screening the TBI guy you found but maybe my experience will help some.........I hope.

 

Good luck.

[UnfoldingSky]

comp,

 

I just posted in your anemia thread but was curious to know how you were doing overall.  Did you ever get your sleep sorted out? 

 

Thinking of you,

 

US

[compsports]

Sorry US, I didn't see your post until now.   

 

No, my sleep issues were never sorted out and is the reason I am going to see a sleep doc out of state this coming Friday that I made an appointment for in January.   I can't prove it but my guess is my sleep issues are to partially blame for my developing diffuse large b-cell lymphoma diagnosis due to an impaired immune system.

 

Anyway, my reason for posting is to find out if anyone knows anyone who went through psych med withdrawal and ended up with cancer.   I would love to talk to that person and find out what their decision-making process was whether to undergo chemotherapy or not.   And if they did, how did they deal with the side effects which seem to me to be brutal?

 

Finally, this is very tough for me to say but I feel my sleep issues greatly worsened my already impaired executive function which caused me not to keep up with preventative exams that maybe could have caught this before cancer developed.   

 

I know folks are very leery of conventional doctors and rightfully so.    But please, please, please, please, keep up with your preventative exams because if you don't, you'll spend more time with doctors than you ever want to.

 

Back to the sleep doctor - I almost canceled because I wondered what the point of seeing this guy was if my potential chemotherapy drugs were going to negate anything this guy suggested.   But I realized that unless my sleep issues are resolved, I have no chance against the lymphoma.   And as the guy said in an email, he can't help me unless I show up.

[UnfoldingSky]

Oh comp...I'm so so sorry to read this.  I'm in shock...of all the things to happen, haven't you been through enough.  (((Hugs)))

 

My Mom had breast cancer and she recovered.  We feel she probably had withdrawal before that too.  She took Celexa and definitely had an adverse reaction to it, though not as bad as the one I had.  I recall she came off too quickly but don't recall the details of how quickly.  She developed problems with sleeping too, after taking it (before the cancer), couldn't stay asleep all night, disinhibition, personality changes, and had twitching in her jaw.  Can't recall what else right now.   I had jaw movements too though so we feel likely it was a sign she had withdrawal (I was diagnosed at one point.)  

 

She had chemo and radiation and surgery.  I just asked her about the chemo, and she said that they use different kinds of chemo so it's hard to say what your experience would be.  However for her with the kind she had, she actually wasn't anywhere near as badly off as you would expect her to be based on what you hear about cancer treatments generally. 

 

She expected to be bedridden and vomiting but she was usually able to go about her daily activities, even went to work, and she was above retirement age when this started.  We were all pretty stunned...We were convinced we'd have to be doing so much for her because she'd be so debilitated, but it was not even remotely like that.  She was only sick a few times and it's not clear it even was from the chemo.

 

So it seems it's at least possible for it not to be as bad as you might expect, even with past issues from psych drugs. 

 

If there's anything I can do to help out from here, please let me know.  And let us know how the sleep doc appointment goes too.  You'll definitely be in my thoughts.

[nz11]

Sorry to read of this also.

 

It was interesting to read AliGs post above number 254 where she talks of sleep issues.

As far as i am aware and maybe she can comment but i think she is sleeping much better these days.

I really think this is an effect of the drugs and we will just have to give it 'time.'

[stan]

hi compsports,

 

i have sleep destroyed and immune diseases such as psoriasis and Gougerot-Sjögren i never had before taking paxil, all appear after taper

 

my heart is with you

[compsports]

US - Thank you so much for your encouraging post regarding your mom.  I really needed to hear that.   I am glad she is doing well by the way.   And thank you for your support.

NZ - Thanks.   I am glad to hear AIG is doing better but sadly, in some cases, more time doesn't solve the problem.  Now in all fairness, before I got the cancer diagnosis, I was investigating the possibility of hyperparathyroidism which I pushed aside.   But a recent abnormal calcium level has me zeroing in on this again although getting doctors to take this seriously will be another issue.   Anyway, I wondered if that might be causing my long existing sleep issues.

Stan, thank you.  I am so sorry about your situation.

[compsports]

comp,

 

I just posted in your anemia thread but was curious to know how you were doing overall.  Did you ever get your sleep sorted out? 

 

Thinking of you,

 

US

Do you have a link to that?   Cardiologist was concerned about my having slight anemia and said it can cause an elevated heart rate.    

 

I wish I was making this up but ******* nurse in oncologist's office said my anemia was part of having lymphoma and had no suggestions.   Doctor is on vacation until next week.

 

I plan to start eating liver again in addition to taking the multi with iron.   But will that be enough?   

 

Interestingly, cardiologist thought about prescribing a dieretic for my slight swelling.   She didn't just say, oh well, that is part of having lymphoma.

I would have turned down the prescription by the way but at least she gave a damm.

 

Now if the nurse had said that she understood my concerns but I really needed to talk to the doctor, that would be ok.   But she was a total ******* moron.

 

And by the way, she blew off my concern about having a high calcium leve at 10.7.   Even my PCP was concerned about having a 10.4 and ran a repeat test which turned out to be 9.8.   But I understand fluctating levels are not normal but most doctors don't see it that way.

[UnfoldingSky]

Hi comp,

 

Here's the link:

 

http://survivingantidepressants.org/index.php?/topic/14326-iron-supplement-recommendations/

 

That's brutal about being run around like that.  It sounds like what my Mom went through too, her doctor took off on vacation after diagnosing her as well. I'm angered reading they are passing you off like this!

[compsports]

Thanks US for the link and your support.

 

I am sorry your mom went through the same BS.  It is bad enough that healthy people are put through this cr-p much less folks who have a serious condition.

 

And by the way, we rightfully warn people on this site about alternative medicine quackery.   But it seems this nurse is a perfect example of conventional medicine quackery.

[AliG]

CS. I'm so very sorry to hear this. I have already done some research into this subject in my quest for regaining health naturally.

 

Whilst I can't recommend anything, I would encourage you to do some research before you choose a certain route. ie Allopathic.

 

I found this documentary illuminating and thought provoking.  The Truth about Cancer : A Global Quest

 

https://www.youtube.com/watch?v=KqJAzQe7_0g

 

I think everyone has to make their own choices based on their beliefs and knowledge but it can certainly help to have as much of that information as possible because it carries power and with that comes educated decisions. Whichever way you decide to go I'm sure it will be informed and suit your individual needs.

 

Wishing you the very best,

Ali

[mammaP]

Hi CS, I too am sorry to hear the news and also hope that you will research all your options before making a choice. It is very frightening to be diagnosed with cancer and trying to decide what to do for the best.  Thinking of you and sending Mamma hugs . 

[manymoretodays]

Hi compsports,

 

Yes.....also thinking of you and sending hugs and sleep and all the rest....... 

 

No links from me of course......... but looking forward to some more updates as to how you are doing, what you decide, etc.

 

Much love and peace and healing sent,

 

mmt

[compsports]

AIG, thanks for the link to the video.  I will watch it when I have a chance.

 

MamaP, thank you for a mama hug.

 

MMT - Links not required.   Thank you for your well wishes.

[UnfoldingSky]

comp, how are you doing?  Did they finally help sort out the calcium and iron issues? 

[compsports]

Thanks US.   For reasons I don't want to get into, I started chemotherapy.   The worst part has been dealing with the Predisone side effects that are a required part of the chemotherapy.

 

The iron issues were sorted out.

 

Thanks~