POLL: A Snapshot of the Health Problems of Forum Members

[frh]

Mars, I made seven choices but only the last one (still get tired more than I think I should) is highlighted when I view the poll. If they did not get counted, you can add the following to the total:

Other throat/breathing problems because of damage to my esophagus (having nissen fundoplication surgery on Friday).

Overweight (6' tall and 275 pounds). After my knee replacement surgery last summer I lost 30 pounds by watching what I ate and riding my recumbent bike. When the irritation in my esophagus started last November they changed / increased the medications that control GIRD. I stopped riding my bike and gained that 30 pounds back.

I had a discussion about this with my ENT yesterday. She thinks the level of medications I am on now eliminate any acid forming in my stomach. And the antibiotics that I have had over the last year have killed off a lot of the beneficial bacteria that should be in my system. That allowed candida / fungus / yeast to inhabit my digestive system (and right now my throat). She thinks that's why I always feel hungry...

In spite of getting my AHI generally under 2.5, CPAP is not making me feel as energetic and clear-headed as I think it should. That started to change a little a month ago when I began using supplemental O2 at night. But on nights when I forget to turn the O2, my short-term memory is down the tubes the next day. On those days I spend almost all of the day looking for things I know I put down somewhere...

I had a sleep study a week and a half ago. The RT did NOT put me on O2 like I half-expected. I slept the entire night except for a bathroom break around 1 am and nother around 3:30. My impression each time I woke was there didn't seem like much pressure in the mask. But she wouldn't share anything with me.

I almost fell asleep on the freeway on the way home. As soon as I got home, I strapped on the mask (including O2) for a 2-1/2 hour nap. My AHI for that nap was 12.3. I felt really tired, crappy and cranky the rest of the day. If they got anything dialed-in in the 7 hours I slept, it did not show-up in the way I felt afterwards.

Mildly high blood pressure, around 165 without meds. Fortunately, it is easily controlled with the $4 a month stuff from WalMart. (I wish the cheap stuff would work for my wife.)

Of course I checked GIRD (seems like a duplication in the poll).

I did not check depressed. But I am generally pissed that I can't seem to get all of these things that affect quality of life under control.

Unfortunately I am having a bit of anxiety right now. I have to wait until Thursday to get the results of my sleep study, and I will be going in the hospital for for a surgery I am not real excited about on Friday.

The anxiety about the sleep study is that I don't expect to really learn much about why CPAP is not making me feel that much better. I hope I am wrong, but the concept of "doing what it takes to feel better" seems way too subjective to mesh easily with hard data collected during the sleep study.

I am also concerned that nissen fundoplication surgery doesn't seem to work for everyone. Also I keep reading about other problems people start having after the surgery. Unfortunately, several doctors have told me I can expect to eventually develop full-on Barretts esophagus, then cancer. Plus, the weight gain / fungus / candida problems I am having will only get worse without the surgery because I will have to stay on the meds.

[breakfast]

I do have other problems which can't all be attributed to sleep apnea--
Physical side, I have asthma, LPR & Barrett's esophagus, a rare skin condition known as hidradenitis suppurativa, and a tailbone problem caused by a birth defect, which leads to frequent pilonidal cysts. Also, malignant progressive myopia and fuch's dystrophy. On the mental side, I have OCD, GAD, bipolar I, and I am still recovering from postpartum psychosis.

CPAP has helped LOADS with my hypertension (maintaining -30pts for almost a month) and my exhaustion and slightly improved my mood. It also speeds up healing time when I have a flare. I'm not going to credit CPAP for my recent 20+lb weight loss, but I wouldn't have been able to do it without CPAP either.

[mars]

Unfortunately, several doctors have told me I can expect to eventually develop full-on Barretts esophagus, then cancer. Plus, the weight gain / fungus / candida problems I am having will only get worse without the surgery because I will have to stay on the meds.

Hi frh

I have Barretts Esophagus. I was told by two specialists, whom I no longer see, that the likelihood of the Barretts Esophagus developing into cancer was slight. But, I figured, however slight that may be, some people get it. So I had the fundoplication. Was not Ph tested afterwards, and about a year later, when I insisted on a Ph test, it was found that the fundoplication (apparently a surgical success) had made my acid reflux worse.

During that time I saw a study (forget where) that said that Barretts was often wrongly diagnosed, and therefore, for those who really had it, cancer was more likely than had been thought (but it was still slight).

I cannot tolerate PPI's, so I am now looking at a possible further fundoplication.

As acid reflux is considered the cause of most instances of Barretts Esophagus, current medical opinion, on my reading, is that lessening the reflux is likely to lessen the chance of the Barretts Esophagus turing into cancer.

A google on Barretts Esophagus will soon get you up to scratch on this, if you have not already done so.

http://www.google.com.au/search?q=cause ... =firefox-a

Bear in mind -

Chronic heartburn (or GERD - gastroesophageal reflux disease) is the most important risk factor for the development of adenocarcinoma of the esophagus (Barrett's associated cancer). It has been shown that the risk of cancer increases in proportion to how often you get heartburn symptoms and the length of time that you have had a problem with heartburn. In other words, the more frequent your heartburn symptoms and the greater the number of years you have had heartburn, the greater your risk of cancer. In one large study of heartburn and the development of adenocarcinoma of the esophagus, the majority of patients who had esophageal adenocarcinoma also had Barrett's esophagus. Others have shown that the majority of patients who have chronic GERD and develop esophageal adenocarcinoma also have Barrett's esophagus. What this probably means is that the more heartburn you have, the more likely you are to develop Barrett's and it is the Barrett's esophagus that increases the risk of developing cancer. No one knows whether Barrett's esophagus patients who continue to have GERD have a higher risk of developing cancer as compared to Barrett's esophagus patients whose GERD is controlled with medication or anti-reflux surgery. There is certainly no convincing evidence that controlling heartburn symptoms with medication or anti-reflux surgery prevents the development of cancer in Barrett's esophagus.

quoted from -

http://www.barrettsinfo.com/content/2a_ ... rretts.cfm

However for your Doctors to say -

I can expect to eventually develop full-on Barretts esophagus, then cancer.

is not supported by anything my current Doctors, and my reading, have indicated.

However, it is not rocket science to figure that lessening the reflux is likely to slow the change from low grade dysplasia to high grade dysplasia. And I am hoping to do that, and die from other causes before I get cancer of the esophagus.

There is now treatment for Barretts Esophagus that deals with it directly -

http://www.google.com.au/search?q=treat ... =firefox-a

and I have an appointment with a specialist who does this.

So fundoplication is not the only option you have.

Good luck in working it all out.

cheers

Mars

[howkim]

... several doctors have told me I can expect to eventually develop full-on Barretts esophagus, then cancer.

I hope not. My sister was diagnosed two years ago with esophageal cancer, I think probably Stage 1. (Her docs said 2a, but there was no penetration through the mucosa.) Never had a previous problem as far as I know. Almost exactly two years ago, she had an esophagectomy. The cancer is gone, but the problems from the surgery continue. I hope this doesn't happen to you.

[Desperate_in_DM]

As well as OSA I have a weight problem (20 lbs over "normal" for BMI. I am reminded of this at EVERY visit)

As well as OSA I have a memory/thinking problem

As well as OSA I have a depression problem (OSA causing my depression)

I still get tired more than I think I should

*******************************************************************************************************
I should add
EXTREME fatigue (even 200 mg of Provigil doesn't keep me awake during the day)

complete change in personality (now ALWAYS bitter, irritable and filled with rage)

headaches to the point of vomiting after having slept for at least 2 hours even with the machine

joint swelling/pain

sexual dysfunction

[frh]

Thanks for the response Mars. My statement about developing full-on Barrett's, then cancer is probably more what I wanted to hear than what the doctors really said. Barrett's is not what scares me anyway because I can't feel it.

I went to the ENT Monday for the 30 day follow-up of my turbinate reduction surgery. She found thrush in my throat. I told her I wasn't surprised, since I have had a fair amount of antibiotics that kill the beneficial bacteria in my system and drugs to suppress the acid in my stomach over the last year. I'm reasonably certain Candida (yeast / fungus) is at least partially responsible for my fatigue, weight gain and cravings for food and candy over the last year. (Before my knee replacement I stayed away from antibiotics as much as possible.) After the surgery, I really want to go on a cleansing diet and change my eating habits. I did it 6 or 7 years ago and lost more than 60 pounds. Unfortunately, I got out of the habit of eating right and gained 50 pounds back.

Even though the doc was running late, she spent a lot of extra time talking with me about the surgery. She does not know the surgeon except by reputation. I asked her about the PH test. She didn't think it was that important for me. She went on to say the combination of protonix and sucralifate eliminates most of the acid in my stomach. That might also have something to do with my stomach just not feeling right unless it is full. After my knee replacement surgery last July I lost 30 pounds. Since my esophagus started feeling irritated in November I gained it back. Truth is, I am surprised I have not gained a lot more than 30 pounds.

It is even more bothersome to me that the contents of my stomach try to come back up whenever I lift anything heavy, bend over to tie my shoes or ride my recumbent bike. That means I can't get much exercise, and without the surgery I will probably continue to gain weight. On one hand, I feel like that would go away if I lost weight. But on the other hand, I remember the GIRD did not go away when I lost weight before. So that leaves surgery as my best option.

Truth is, I really would like to find a good reason to chicken-out. Even the change in how I will have to eat post surgery scares me. (No more wolfing down double cheesburgers.) The doc reminded me I was pretty freaked-out before the turbinate reduction surgery and the result was better than I expected. So I walked out of her office convinced I should have the surgery.

[mars]

I asked her about the PH test. She didn't think it was that important for me. She went on to say the combination of protonix and sucralifate eliminates most of the acid in my stomach.

Hi frh

Just a quick response.

How can the Ph test not be important to everybody who has a fundoplication. How else do you know if it has worked or not.

And I would assume if the protonix and sucralifate are to eliminate the acid, then you will not be taking them if the fundoplication works. And you need the Ph test to prove that.

cheers

Mars

[frh]

Mars, she did not directly address the ph test other than to tell me not to let it stop me from having the operation. After that the subject changed and she reminded me protonix blocks acid production, and sucralifate is like eating chalk to coat the stomach and soak-up acid. I took that to mean a ph test would not prove anything right now.

I asked her if they wean patients of the acid blockers after this kind of operation, and she told me I will stop using them. If the conversation had continued, I would have asked her about a rebound effect from stopping the acid blockers.

But she is not my surgeon. She is the doctor who did my turbinate reduction a month ago. She was just willing to talk to me about the surgery I will have on Friday. She told me to make a 3 month follow-up appointment for the turbinate reduction, and said she would be interested in knowing how my surgery went. I will ask the surgeon about a ph test to prove the operation worked.

[sleepymama]

i checked off weight (only about 20lbs overweight now)
depression and anxietyn (take meds)
and acid reflux (take meds)

[elena88]

As well as OSA I have a weight problem (20 lbs over "normal" for BMI. I am reminded of this at EVERY visit)

As well as OSA I have a memory/thinking problem

As well as OSA I have a depression problem (OSA causing my depression)

I still get tired more than I think I should

*******************************************************************************************************
I should add
EXTREME fatigue (even 200 mg of Provigil doesn't keep me awake during the day)

complete change in personality (now ALWAYS bitter, irritable and filled with rage)

headaches to the point of vomiting after having slept for at least 2 hours even with the machine

joint swelling/pain

sexual dysfunction

good grief! you are having a time of it, arent you? Im so sorry things have gone from bad to worse..
Its almost like you are having a system wide break down.. I bet you feel like going on that show
mystery diagnosis.. Well, I dont know what to do to help you, maybe you have more than one
thing going on.. if you could find out and tackle them one at a time.. The rage thing, I had that
a few weeks into cpap, I dont know what happened, but my body was pretty pissed off it wasnt getting
its normal shots of adrenelin from lack of oxygren.. almost like a withdrawel.. now it only happens when
I dont get but a couple hours a night for three or four days in a row.. then Im a total rager..
(my nick name is rager, so I understand that part of it.. ) Have you been looked at for chronic fatigue syndrome?

[LSAT]

Mars and those of you that have Barretts, Johns Hopkins has a great discussion board.

http://pathology.jhu.edu/beweb_chat/

[mars]

Mars and those of you that have Barretts, Johns Hopkins has a great discussion board.

http://pathology.jhu.edu/beweb_chat/

Thanks LSAT, that looks great.

There looks to be a lot of old posts to look at, so I will have to do a bit of catching up.

cheers

Mars

[irishgranny]

I checked the items that I have trouble with but have so many other issues. The worse of course being Fibromyalgia. I also have hypothyroidism. I did not check that I am more tired than I feel I should be because I just started on CPAP therapy.

[Sillyme]

Also have MS (diagnosed in 2003) which I have kept stable with diet and supplements. Much of the fatigue I thought was from MS seems to have been OSA related.

[Tovi]

I have dystonia (had it since birth) that may also cause sleep disturbances. I also have chronic fatigue which is probably caused by several other factors including mild hypothyroidism, low iron stores and mild hormone imbalances. Treating these with diet, drugs and supplements was helping, but I was still struggling. Being diagnosed with OSA has been such a relief. My neurologist kept telling me "You have dystonia and you're just getting older" I'm 41, so not *that* old, thank you. And even after two months of incomplete CPAP therapy, I'm already starting to feel better. I also wonder if my hormones would be in better shape if I actually got proper sleep for a while.