HIV+ CO-MORBIDITY WITH SLEEP APNEA?

[bobosa]

I was diagnosed sleep apnea in 2005 having been positive for 6 years and on ARV for 3 years then. I had tonsillectomy in May 2006. In the course of this time I have changed my drug regime twice. First was from Stocrin to Nevirapine because of the depression side effect. The second was from Stavudine to AZT (Zidovudine) because of my lipoatrophy. I am presently on the combo of AZT+3TC+Nevirapine.  I recently gained more weight from 65kg to 72kg. I used to weigh 75kg pre-ARV.

 After my tonsillectomy in 2006 I still experience snoring and daytime somnolence, which is adversely affecting my study. So I had to go back to ENT for consultation. I was sent for polysomnogram (sleep test) on the 22nd of last month and booked for special clinic yesterday (Wednesday).

On my first special clinic just after my tonsillectomy, I was told by the leading specialist, a professor, that my sleep apnea has nothing to do with my HIV. But on my second special clinic and after conducting endoscopic examination on me, I was now informed that the sleep apnea has co-morbidity with my HIV. The exam showed that I have enlarged lymphoid tissue and prominent base of tongue as a result of enlarged lingua tonsil.

Before now, the specialist was contemplating surgery as a last resort but after this examination, the panel of special clinic consisting of two professors, a specialist and several ENT doctors concluded that surgery is not an option and believe that my sleep apnea is due to co-morbidity. The only option, I was advised, is to obtain CPAP.

My concerns are first, I was informed that CPAP is not a permanent solution to sleep apnea; second, if my sleep apnea is left untreated what effect can it have on the progression of my HIV? Or on its own if left untreated what is the worst scenario?

I sleep most during the day with my study suffering in the process. And I’m writing semester exam in May in my second year towards LLB.   

[donnahornby]

I don't know about the apnea, sorry, but your reference to stocrin and LLb makes me think you're from SA, like me. May I ask you whether you've had to deal with nausea and headaches - I think the headaches are from stocrin, the nausea from Combivir. I'm struggling to imagine that this is my life now - been on the meds for a month. And also very tired in the day - quite disfunctional around any brain work. Good luck though with the apnea.

[northernguy]

Interesting, I developed sleep apnea over the last few years, it may have coincided with my HIV infection.  I'd never heard they could be linked.  I was told the surgical route has only a 50% chance of being effective, so many people choose CPAP.  No, its not a cure, but look at it the same way as HIV meds: a necessary solution.  There's a CPAP forum: http://www.cpaptalk.com/

[bobosa]

Donna, your guess was right. From SA. Yeah the Stocrin experience was too horrible. I almost went gaga. If you are experiencing the same thing, I think Nevirapine is a better alternative but discuss this with your doc.
Thanks Northernguy for your reply. See below for a reply I received from another site: www.thebody.com. I'm not sure there has been a particular research on this aspect of co-morbidity of HIV and sleep apnea. The emphasis is mine.

Response from Dr. Henry

Some HIV+ persons who are doing well can have persistent enlarged lymphoid tissue including in the oral cavity. Sleep apnea can be a challenging disorder for which CPAP can provide symptomatic improvement and for which surgery is not always the best option depending on the anatomic situation. I have had scores of patients with HIV and sleep apnea. Since sleep apnea and HIV are fairly common they can co-exist in the same patient so it is unclear to me if HIV+ persons are at higher risk for sleep apnea. With markedly improved long term survival and frequent weight gain as a problem in HIV+ persons on effective treatment, it seems like the opportunity to observe increased rates of sleep apnea is there and I believe that I have seen that in my own patients. What I don't know is whether increased size of oral lymphoid tissues contributes more to the problem among HIV+ persons. That is an interesting concept but again I haven't seen much on that from studies of HIV+ populations. Most of my patients with sleep apnea seem to respond to standard treatment approaches similarly to non-HIV+ persons from what I have observed and the feedback I get from our sleep clinic specialists.KH

[risred1]

I have apnea, but not co-morbidity, just the "standard" big neck - blocked airway type.

I use CPAP and am confused by the statement that it is not a permanent fix for the condition.

In my neck of the woods, surgery really is not the preferred option. The sleep specialists prefer CPAP, if the test shows it will work, over surgery.

As long as you use it and it is working, it essentially is a permanent solution. You just have to use it.

I have a machine that is self regulating, RESMED, it detects apnea events and adjusts the airpressure as needed throughout the night.

The head piece has advanced considerably over the years and is much more comfortable than they used to be. Although the test was conducted with the old style T-Bar as they call it, what you get for home is largely up to you. I would recommend you get the Swift. Its like a snorkel, and one can roll around and event sleep somewhat on your face.

In the beginning, like many things, it is weird to have the mask on. But the results were so amazing as i finally got into level 3 and 4 stage sleep. I use the device everynight!

On a personal note, I'm sure that being able to have quality sleep is important to how your body fights resists HIV. You really have to try to take off all health impacting issues off the table, so to speak, as you can. Sleep, weight, blood levels, etc. by putting yourself in a good position, you can tolerate better the sides effects of HIV and/or Meds.

[Miss Philicia]

bobosa -- I, like you, are convinced my sleep apnea is connected with HIV.  I have ALWAYS had a slim build, so all the doctors look it me very surprised that I'd even have sleep apnea in the first place.  I was first sent for a sleep study back in 2001 and was diagnosed, however they said it was a Grade 1 (or whatever the lowest first grade is called) but by the time I'd go back to get a CPAP or something I had a major upheaval with my job that I'd had for a decade and of course this change all my insurance around so by the time I wanted to address this sleep apnea diagnosis it was two years later and OF COURSE the new doctors sent me off to another sleep study, which OF COURSE told me the same thing as the first one, and then I went back a third time to the rather prestigious and very old Manhattan Eye & Ear Hospital where they fit me overnight for a CPAP -- only to later be told by my HMO that you had to have at least a Grade 2 diagnosis for them to cough up the money for this.  *SIGH*... why the fuck did they make me even get fitted for that dreadful contraption in the first place?  Frankly I was glad I didn't have to use that awful thing because the night I went in for the fitting I just couldn't see how anyone sleeps with that mask on their face.  I have enough trouble even sleeping in a bed with another person's body in it (NOT good when you are in a relationship!) much less being constrained by something like a CPAP... God bless you if you go that route and can handle it.  I know I've read a lot of people swear by them.  If you are familiar with the (annoyingly conservative) pundit Andrew Sullivan you know he has HIV and also sleep apnea.  I'd really like to know how common this is for HIV-infected individuals.  For some reason I'm convinced it has something to do with lipo, but it's interesting to see you point to the lymphatic stuff as it makes sense.

Now, I've been on Medicare since my last sleep study so I recently brought up this old diagnosis with my new HIV specialist here in Philadelphia and he wanted me to get a new sleep study.  He seems to think, due to my body type, that I could possibly have what's called Central Sleep Apnea as opposed to Obstructive Sleep Apnea, the later of course is seen in the majority of cases.  But when I went to have the sleep study done I was going to have to pay the 20% that Medicare does not cover, and that amount was $800 which I absolutely can not afford unfortunately, so here I sit with no resolution.  I've kind of resigned myself to just living with this, though it's annoying and my last relationship my partner complained incessantly that he could not sleep with me due to the nightly noise I produced.  Invariably he ended up many nights on the couch which certainly does not help for positive relationship does it?

I really do not find a CPAP to be a suitable solution, and if I ever can get a sleep study done I want to have laser surgery to correct whatever is causing this.  One place I looked also lists protriptolyne or klonopin to treat Central Sleep Apnea, and I already take the later for a chronic anxiety disorder... not sure if it helps with the apnea.  As I haven't had a partnered relationship now for five years I do not know how much noise I currently make nightly.  They also list high blood pressure as a result of apnea and I was diagnosed with that a year ago, though it's controlled now with medication.  Of course, higher blood pressure is seen with folks that have been on HAART for a long period and I have been on HIV medication, and lots of it, now for 15 years.

resource for central sleep apnea:  http://sleepdisorders.about.com/od/sleepapnea/a/central.htm

If you know of any resource about the correlation of HIV and sleep apnea I'd love to read it.  Good luck with this problem and please post any applicable follow up for me.

[Miss Philicia]

Hmm, this is interesting:

http://www.journals.uchicago.edu/CID/journal/issues/v37n10/31876/31876.html

One of the few sources I can find connecting HIV lipodystrophy to sleep apnea.  It really makes sense to me that this would occur.  With my body my lipo means my limp areas (arms and legs) have lost body fat, yet my body weight is what it should be for my height so over the years the fat accumulation has shifted.  We all know that much of it goes to subcutaneous fat in the gut, which I have, but it seems logical that it could also go to obstructing areas that would cause sleep apnea.

This link also show some correlation but really they need to have a larger study group:

http://www.aegis.org/conferences/iac/1996/MoB1301.html

[risred1]

philly267, i feel really bad that your doc says to get another study and you can't afford to get it done.

Is there any advise out there to help address this situation? can the Philadelphia fight org help?

If you go back in, make sure you sleep on your back! (i was coached.) You want to be in the position that apnea is most commonly occurring for the study purposes.

As far as the T-Bar mask, I had the same reaction you did, how can anyone sleep with this, but even with this, I know people who adapt to them. The current technology has and continues to advance and the new CPAP units are small enough to travel with, some run on batteries if you go camping, and the new masks come in a variety of Gel and Snorkel style masks.

I've slept with people who use CPAP and now of course I wear one everynight, it never was a problem for me with others using one and seems to be OK except when the exhaust from the mast blows on my partner, which can be a bit chilly. The new machines are pretty quiet, a moderate low fan white type noise, which can itself help induce sleep.

is it heaven on earth? not at all, but considering the options of not getting the right sleep, its not that bad. I'm used to it, and I expect that others can as well, especially with the new units and masks.

good luck to both of you!

[bobosa]

Risred and Philly, thanks for your insightful pieces. The snag is that situation is quite different here in South Africa to the US. Philly I will advise you really take a comprehensive test for your apnea and if it is what u feared it to be the majority opinion is that CPAP is a better choice to surgery.
Risred your piece is really encouraging. But as things are presently, it seems I'm stuck with this apnea problem with no solution. As I am a self employed guy with no medical aid, I have to fork out money for any medical bill. And that has been scaring in going to the private hospital here.
The manner the ENT doctors concluded about my co-mobidity by telling me I should seek CPAP in a private hospital was like passing me a death sentence. I have been using public hospitals for my HAART and sleep problem. This has in a way restricted my options.
However I'm refusing to take this as such. What I plan to do now is to go back to the ENT clinic and request for my sleep test result and a referral letter to a private sleep clinic here. The obvious reason is may be they won't have the need to start all over from the scratch at the private sleep clinic and continue where the ENT docs stopped. Might be that would reduce the cost. But then I don't have any idea what this CPAP may cost and if I am able to afford it. I think the first thing is taking the above step and see where it goes from there.
In the meantime it remains a miracle to me waking up every morning: that is living with two life threatening diseases together at the same time.

[Miss Philicia]

Like I said, I've had two separate sleep studies done and both times I was ranked at the lowest range of severity and due to this a CPAP would not be funded.

At any rate I can't afford the part of a new test that Medicare does not pay so the topic is a bit moot for me right now.  Can't squeeze water from a rock.

[risred1]

I am frustrated that those who need some practical help are being stymied.

Philly 267, apnea is a funny thing, and can get worse with time. While I understand the inability to get past the "rules" of medicare and co-payments, the only other methods you perhaps could deploy is: Negotiations with Sleep centers to see if they would do it without Co-pay, working with other aids health organizations that may provide funding to fill the gap. You may be already familiar with Philly Fight or Not, and I've not used their services yet, but my understanding is that they often provide some assistance in these area's. Apnea may be a stretch, but if your doc is concerned enough to suggest another test, then perhaps Philly fight might be able to help, or help you negotiate with a sleep center to get the test done.

To our friend in South Africa, I don't understand the medical system there, but perhaps another route you can take is to obtain a CPAP on your own. I think that this might be thought of as controversial, but cpap is just an air pressure machine in the end. It is not prescribed medicine, and perhaps if you can get a machine, you can find someone to help you get it setup. I know its a bit of a reach, but you can try looking at cpap.com for a self regulating model. Perhaps they can also provide some guidance to the machine makers that are available in South Africa. Perhaps you can contact them and see if any assistance can be provided to you so you can get a machine to help you.

I know that CPAP and APNEA perhaps are underestimated in the eyes of medical practitioners of the world where epidemics are being fought, but it is important to you to have something to work with such as CPAP. If surgery was provided once, perhaps the CPAP has to be the next option and I would hope that there is a way to obtain one, either through the medical system you have to use or by other means.

All my best.

[Miss Philicia]

1) I tried negotiating with the sleep center

2) I go to the Lax Center which is part of Philly Fight and I don't know of them doing anything like you suggest.  I'll ask around though.

Do you live here in Philadelphia?

[risred1]

Another question you might ask if the sleep center has any possible resources that may be willing to assist? Are there any sleep studies being done in the area that you can participate in? Can the univeristy of Pennsylvania's sleep department provide the service at cost of medicare? and/or are there any city of philadelphia resources that might be a resource if some funding is needed. (my sleep study was done in phoenixville as part of the U of P sleep medicine department. My insurance covered it, but I still choose to use U of P as my hiv specialist is also there. part of my theory that univerity medical centers are in the front line of research and knowledge of HIV treatment and are engaged in research. Which leads to long discussions about boutique care and undocumented results of nutrients and the like...

As you can tell, I'm in the philly area.

[risred1]

I did some checking and CPAP.com does require a prescription from a doctor before they can ship out a CPAP machine. The good news is, they will help provide the type of information to the prescription writer so that the order can be made. This is a FDA rule.

I do not know if CPAP.com can ship internationally. But I'm sure if you can contact them, they would be able to tell you more.

They do have CPAP machines for as little as $250. I know when I say little, this amount can be just as huge as anything else. And I'm sure currency exchange rates are an issue. But this show how much they have come down in price over the years as the technology advances, making the machines smaller.

I hope that this information is of some use.

[bobosa]

Thanx Risred. I checked on the cpap web. But I'm in the process of consulting the private sleep centre here. I will see if what they have compare favourably with getting it overseas, price wise and quality wise.

[northernguy]

Philly, just another reason why you have to marry a Canadian   My sleep study was covered, though my work insurance paid for the CPAP.  I'm not sure if public health would have paid for the nmachine had it not been covered, my apnea was severe.

Having blithely said that the CPAP wasn't a big deal, I haven't been able to use it for a month.  After I came back from Hawaii and my bactrim allergy, I couldn't breathe with it on!  Weird, its like my nostrils were swelling shut and woudn't let me breathe through the machine.

[risred1]

I have had my moments with CPAP when severely congested.

I have a self ritriculating (something like that) machine that adjusts the air pressure, but this only happens after 15 minutes at a relatively low pressure. This change was based upon machine results after my intial setup. The high pressure it was generating was causing a differently type of apnea, for brief moments, so my sleep doctor made the change to the lower pressure, which initially was hard to deal with.

If you are having this type of congestion that causes you not to be able to use the machine, i would suggest you talk to your sleep specialist  who would probably make an adjustment to the machine, or talk to you about how the machine can be adjusted, or if the machine can self adjust to compensate for those tough days!

I was lucky as well that my machine and tests were paid for by my insurance. I don't know what the world is like with National Insurance, I just know that we have two or three levels of insurance today, and the folks like me who have good insurance, don't wish other ill will, but don't want to give up their private insurance. Its going to be a long ride to where we can have more equal and high quality insurance, especially in a goverment mandated program. No easy answers!