Replies to This Discussion

Permalink Reply by Terry Vella on April 16, 2012 at 7:45pm

Mary, your right about it being a lot of work, but personally I think the SA and depression has in some ways been a wake up call for me. I have changed my life values as well as life style changes, I eat proper food (fruit and vegetables), my sleep hygiene is better, my health is better. When you are in that depressed state it is very hard to get out of it and different people react differently. For me, I felt like I wasn't far from dying, now I want to live life and not waste a day. I already wasted a few years of my life which I can't get back. It's sad to say but maybe it was meant to be for me.

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Permalink Reply by Mary Z on May 17, 2012 at 10:10am

I had my 60 day ASV  check up this week.  I have gone from a six month average AHI of 28 to a 30 day average of 11.  Quite an improvement. I believe my depression has been lessened so that my meds are now effective.  I have gone from taking Lunesta every night to one benadryl and plan to stop that this week.  I'm still sleeping long hours (maybe stopping the benadryl will help that).   Most of my events are hypopneas, very few obstructive apneas or central apneas.  Since I have improved so much he did not make any changes to my settings. I still think it will take from three to six months to completely benefit from the ASV.  I go back to see him in six months and if everything is fine go to yearly.

 

The main thing is I'm not a typical ASV user.  I didn't have central or complex apnea.   I just had apnea and over four years of different machines and settings did not get the improvement I wanted.  I found the AHI of 28 distressing, though I did not desaturate. I was lucky to have doctor willling to give me a trial of ASV in the lab and it worked.

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Permalink Reply by Kath Hope www.hope2Sleep.co.uk on May 17, 2012 at 1:03pm

So very pleased to hear this Mary, and may you continue down this positive route, which you truly deserve :)

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Permalink Reply by Ginny Edmundson on May 17, 2012 at 4:26pm

Great news, Mary.

Mary Z said:

I had my 60 day ASV  check up this week.  I have gone from a six month average AHI of 28 to a 30 day average of 11.  Quite an improvement. I believe my depression has been lessened so that my meds are now effective.  I have gone from taking Lunesta every night to one benadryl and plan to stop that this week.  I'm still sleeping long hours (maybe stopping the benadryl will help that).   Most of my events are hypopneas, very few obstructive apneas or central apneas.  Since I have improved so much he did not make any changes to my settings. I still think it will take from three to six months to completely benefit from the ASV.  I go back to see him in six months and if everything is fine go to yearly.

 

The main thing is I'm not a typical ASV user.  I didn't have central or complex apnea.   I just had apnea and over four years of different machines and settings did not get the improvement I wanted.  I found the AHI of 28 distressing, though I did not desaturate. I was lucky to have doctor willling to give me a trial of ASV in the lab and it worked.

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Permalink Reply by Terry Vella on May 17, 2012 at 7:07pm

Well done Mary, it may take even more than 3 to 6 months but as long as you feel better each day you know you are on the right track. It probably took me about a year but what I do is remember how bad I used to be and that keeps me striving to improve. Also if you have a bad night, just say to yourself, it's only one night and the next one will be better. It wouldn't suprise me if your AHI goes down even further over time as you reduce the meds.

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Permalink Reply by mollete on May 18, 2012 at 6:10am

Mary Z said:

I had my 60 day ASV  check up this week.  I have gone from a six month average AHI of 28 to a 30 day average of 11.  Quite an improvement. I believe my depression has been lessened so that my meds are now effective.  I have gone from taking Lunesta every night to one benadryl and plan to stop that this week.  I'm still sleeping long hours (maybe stopping the benadryl will help that).   Most of my events are hypopneas, very few obstructive apneas or central apneas.  Since I have improved so much he did not make any changes to my settings. I still think it will take from three to six months to completely benefit from the ASV.  I go back to see him in six months and if everything is fine go to yearly.

 

The main thing is I'm not a typical ASV user.  I didn't have central or complex apnea.   I just had apnea and over four years of different machines and settings did not get the improvement I wanted.  I found the AHI of 28 distressing, though I did not desaturate. I was lucky to have doctor willling to give me a trial of ASV in the lab and it worked.

At some point perhaps another NPSG would be in order. Following AHI in someone without distinct target events may not necessarily be helpful, as the ASV simply attacks a breathing reduction with pressure such that an event may not register.

 

If the underlying cause has not changed (which in your case, sounds more like unstable sleep vs. unstable breathing), then any improvement that you feel may be due more to addressing sleep quality issues.

 

Consequently, the trial of holding benedryl may prove revealing. You may get more bang for the buck by addressing sleep instead of SDB.

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Permalink Reply by Mary Z on May 18, 2012 at 9:22am

Thanks, Molette.

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Permalink Reply by mollete on May 19, 2012 at 4:12pm

Continuing this line of discussion, Magdy Younes out of Canada has some interesting observations on medications and their effect on arousal threshold and GG activity (albeit in rats):

 

 
MEASUREMENTS AND RESULTS:
"Lorazepam, zolpidem and diphenhydramine all increased arousal threshold, consistent with their sedative action. GG activity before arousal in response to hypercapnia was increased with lorazepam and zolpidem only, an effect mainly due to increased baseline activity before CO2 stimulation."


 

in

 

Systemic vs. Central Administration of Common Hypnotics Reveals Opposing Effects on Genioglossus Muscle Activity in Rats

 

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2276746/

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Permalink Reply by Renee on May 19, 2012 at 8:01pm

Hello Mary,

 

It is sooo good to read your news.  I haven’t been on SG for a long while, mainly because of fatigue and being just plain too tired to do much of anything.  When I was diagnosed with SA, after 4 overnight tests (2 nights at 2 different facilities), the doctor at the 2^nd facility told me that I probably wouldn’t benefit from XPAP treatment because I had so much alpha intrusion and that the alpha intrusion was the main culprit.  However, I had been following SG for a while before my sleep tests and I was DETERMINED to use CPAP until it was successful.  However, my 4^th sleep test (which was conducted after I had been on CPAP for several months) indicated that I had the same # of awakenings both with and without CPAP –

 

WITH CPAP:                 AHI – 26, Central – 2, Mixed – 0, HI – 48 – TOTAL – 76

in 5 hours & 22 minutes

WITHOUT CPAP:           AHI – 19, Central – 4, Mixed – 0, HI – 53 – TOTAL – 76

in 5 hours & 24 minutes

 

Also WITHOUT CPAP, I had 20.2% Stage 3 sleep and WITH CPAP, my Stage 3 sleep went down to 2.8% and my REM went down from 8.4% to ZERO.  So, with CPAP, I was more tired and after several more months, I did finally give up on CPAP. 

 

I have also tried: Neurontin, Gabitril, Lunesta, Lyrica and Xyrem.  They either caused serious side effects and / or were not effective.  Xyrem was the last RX I tried and it was thought to have the best possibility of success but, no matter how mightily I tried to take it, it caused absolutely impossible GI problems and I just could not continue taking it.  Now I take 30 mg Restoril every night.  I have also changed from topomax to propranolol to control benign intention tremor and I’m taking 30 of 40 mg of propranolol at night to try to eliminate the possibility that the tremor could be causing the alpha intrusion.  I have also tried Nuvigil – didn’t work.  And I am now taking Provigil which may be working a little. 

 

You are probably the most tenacious person I know of in trying to get XPAP to work.  And, now, your posting gives me new hope.  The experience you had, and generously shared here on SG, after your test night, about feeling like a “normal, non-depressed person” and that “life was good” is so really welcome to hear – both for you and possibly for others – including me.

 

Like you, in the 3 sleep tests I had with CPAP, the techs could not get any level to work.  And, now it is really heartening to hear that after years of not giving up, your AHIs are so very much improved.  AND, WOW, you are not sleeping 10-12 hours a night anymore, don’t get sleepy as early in the evening, you have stopped Provigil and may have less depression  ! ! !  BRAVO for ALL your tenacity and efforts ! ! !  Your really do deserve the changes for the better ! ! !

 

I have considered myself lucky if I sleep less than 13 to 18 to 21 hours most every night so I really do appreciate all that have shared.  Like you, I am not what would be considered a typical ASV user.  I have very little central, and no complex, apnea.  I thought that XPAP just wasn’t going to work for me and there was no solution for the alpha intrusion, which can only be resolved by finding the cause of the alpha intrusion and treating that.  But, except for Rock Hinkle, I haven’t had any help to get to the cause of the alpha intrusion.  It is because of all the research and communication that Rock and I engaged in, that I spoke with my sleep doctor and switched from topomax to propranolol and am taking 30 of 40 mg at night to control benign intention tremor. 

 

The 2 doctors at the sleep centers where I had my sleep studies were not knowledgeable, experienced or caring.  Seemed to me they wanted to charge for a sleep test, call in an RX for CPAP and boot me out.    I have much more confidence with the sleep doctor I am with now.   He is recognized for his knowledge and experience and he has really listened to me and engaged me very actively in all aspects of treatment: choosing RX and dosages, recommending meditation (of which I was already an avid fan), and listening to my reasoning about changing from topomax to propranolol and taking 30 of 40 mg at night to try to eliminate alpha intrusion.  At each visit, he has listened closely to my symptoms and thoughts and shown me considerable respect.  And he always explains his understanding of my situation and the reasoning for his proposals. 

 

But, there is no resolution of the alpha intrusion without determining the cause and that has not been able to be done.  However, I have noticed that I am MUCH more tired in direct correlation to my GI problems.  I have had more GI tests than I would have thought exist.  The tests were ordered by a GI specialist who has not considered my sleep and fatigue problems to be his problem, or of any relevance what-so-ever.  And he also wasn’t sufficiently concerned about my GI problems.  But, as my GI problems escalated (including a life threatening emergency hospital stay), he finally decided that the cause of my GI problems did, actually, have to be investigated.  And I am now on a 3^rd cycle of a really powerful anti-biotic, Xifaxam, (April, 2011, February, 2012 and, again, now).  The antibiotic has worked like a miracle to alleviate my incapacitating GI problems each time I’ve taken it – AND, each time, my fatigue has been less of a problem.  So, I have to think hat my GI problems (which are most likely caused by SIBO, small intestinal bacteria overgrowth) may be the cause of my alpha intrusion or, at least, a major contributor causing it.  – And my GI specialist now, finally, thinks: Yep, sure enough, seems this patient is not just thinking she’s really sick; it looks like she actually is really sick.  And so now I will be taking an antibiotic prophylactically rather than being sick for 3 to 6 months and taking only taking the RX in order to avoid being admitted to the hospital.

 

Also, I am hoping to start seeing a particularly experienced neurofeedback specialist.  It has been ‘nigh impossible to get an appointment with her but I may be able to see her on June 8 for a full brain scan to determine how deep the alpha intrusion is and then start treatment to relieve it.  When I spoke with her briefly on the phone, she did tell me that she has successfully treated several patients with the problem.  – Another good thing will be that I will be able to fill Rock in on the experience and progress of neurofeedback treatment.

 

But, now, in addition to getting my GI problems majorly resolved and, hopefully, getting help with neurofeedback – if there could also, maybe be, a possibility to deal with SA by way of SVA, I would be about the healthiest person on the planet !  WOW – I can hardly imagine anymore not being soooo tired – but I sure keep looking forward to the day (and night) when that is the case !

 

So, thanks for always posting about both your difficulties and successes along with all your continuous efforts, as well as all the info and support you always offer to SG members.

 

Wishing you much, much deserved continuous good progress with your overall health,

Renee

__________________

Mary Z said:

I had my 60 day ASV  check up this week.  I have gone from a six month average AHI of 28 to a 30 day average of 11.  Quite an improvement. I believe my depression has been lessened so that my meds are now effective.  I have gone from taking Lunesta every night to one benadryl and plan to stop that this week.  I'm still sleeping long hours (maybe stopping the benadryl will help that).   Most of my events are hypopneas, very few obstructive apneas or central apneas.  Since I have improved so much he did not make any changes to my settings. I still think it will take from three to six months to completely benefit from the ASV.  I go back to see him in six months and if everything is fine go to yearly.

 

The main thing is I'm not a typical ASV user.  I didn't have central or complex apnea.   I just had apnea and over four years of different machines and settings did not get the improvement I wanted.  I found the AHI of 28 distressing, though I did not desaturate. I was lucky to have doctor willling to give me a trial of ASV in the lab and it worked.

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Permalink Reply by Mary Z on May 20, 2012 at 10:37am

Renee, what a fascinating story.  I had a lot of alpha intrusion on my first study, never paid much attention after that- attributed it to chronic pain.  I have Benign Essential Tremor and after the meds stopped working had a deep brain stimulator implant which helps greatly with the tremor in my hand and arms.  I also get botox injections in the back of my head for head tremor.  This makes what Mollete said about this being a sleep problem than a sleep disorder related problem all the more interesting.

Good luck, you seem to be doing very well at finding people that can help you- much persistance and research on your part.
 

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Permalink Reply by Renee on May 20, 2012 at 6:20pm

Hello Mary ~

Thank you for your thoughtful reply.  You have rallied through so many really complex, hard to diagnose and hard to treat health issues.  And so many of your health problems have required such challenging treatments - you couldn't just go the trial-and-error RX route for ET - you had to get a brain stimulator implant, along with botox - too much has been asked of you every step of the way - with so many hard to treat ills ! 

With all you've had to endure, that you haven't given up is Amazing ! 

Much praise and congratulations to you - and continued good wishes for more success and, hopefully, without herculean efforts on your part.

Best and good rest,

Renee

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Mary Z said:

Renee, what a fascinating story.  I had a lot of alpha intrusion on my first study, never paid much attention after that- attributed it to chronic pain.  I have Benign Essential Tremor and after the meds stopped working had a deep brain stimulator implant which helps greatly with the tremor in my hand and arms.  I also get botox injections in the back of my head for head tremor.  This makes what Mollete said about this being a sleep problem than a sleep disorder related problem all the more interesting.

Good luck, you seem to be doing very well at finding people that can help you- much persistance and research on your part.
 

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Permalink Reply by sleepycarol on June 4, 2012 at 11:36am

Mary, I hope things continue to improve for you. 

 

Thanks for alll the time you spend answering questions, making folks feel welcome, and supporting those that need it.

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