Anyone else hitting 30 cmH2O?

[dsm]

Dave,

Can you describe your nocturnal cramps that you take quinine for ?
i.e. some thoughts / examples

- Do these occur consistently (every night) ? - if not what may be the different environment (e.g. summer, winter, temperature change, come and go)
- When you have a typical cramp night are there about 6-8 episodes ? - if not that then roughly how many ?
- Are there any other unusual facets of these events (email me on this if you prefer) ?
- Are they in your foot, calf muscles or thigh muscles or a mixture ? - if a mix what balance between them ?


Thanks

DSM

[dllfo]

Things that keep me awake are ATN, Nocturnal Cramps, lower back pain (from multi-car wreck in June 2001), undiagnosed rib pain, GERD, and others I can't remember. Once awake I seem to stay awake. Frustrating....

- Do these occur consistently (every night) ? - If I were not on Quinine, they used to occur roughly once a week, then sometimes every night for several days.
The calf muscle (sometimes the thigh) cramps so severely you wake up, leap out of bed, jumping up and down
to relieve the severe pain. The last time I had these cramps I had to jump in the air several times, landing on the
ball of my foot. Repeat until cramp "releases" and you can walk again. DANGER: After the 300,000+mg of anti-
biotics in 4 years, my tendons will rupture. The Achilles Tendon is very much in danger here. Not a good thing to
tear your Achilles tendon loose.
- When you have a typical cramp night are there about 6-8 episodes ? - if not that then roughly how many ? Usually one severe cramp. After that I can't sleep so I
walk around the house until the muscle relaxes.
- Are there any other unusual facets of these events (email me on this if you prefer) ? Nothing else I can remember. Just severe pain until the muscle relaxes.
- Are they in your foot, calf muscles or thigh muscles or a mixture ? - if a mix what balance between them ? 95% in calf muscle, 5% in thigh.

[JohnBFisher]

dilfo, though we've not interacted, we have some similar symptoms for very different reasons. (I suffer for Sporadic OPCA, a degeneration of the cerebellum and brain stem).

On my bad nights my unit definitely ramps up to maximum pressure. On my Resmed unit that's 25cm H2O. On my Respironics unit that's 30cm H2O. My wife says it sounds as if the unit is about ready to "take off". And yes, on bad nights it tends to stay there for a while, though I had not checked the graphs. But I doubt it is as long as your events.

It is possible some of your pain medication is interfering with your respiratory drive. But I would expect it not to cause the complete periodic drops in the drive. I would certainly talk with my doctors about that. It's possible you need to move toward a respirator. They will not doubt want to monitor that trend to stay ahead of any serious problems.

I agree with dsm. It sure seems that during those events your machine has gone into respirator mode.

[dsm]

Dave,

The cramps story interested me because I too take quinine but only when the cramps get serious.

I have been trying to find any info I can to explain nocturnal cramps. My GP (who it turns out is
also a prof of medicine at a nearby uni) says there isn't really any clear answer but he prescribed
quinine when little else seemed to work. That does.

The cramps are like yours about 95% calf & 5% thigh. They tend to show up & can occur as much
as 8 or so times a night. But, 1 quinine tablet banishes them for days until they decide to return.

What do I think is behind them ? (these are merely observations or guesses) ...
- I notice that when my mask starts a pattern of leaking the cramps appear less prevalent ?
- Recently bought a new mask seal & cramps became worst I can recall for months !
- The cramps seemed far less likely to occur when I used my Bipap AutoSV ?
- They don't seem to be seasonal (cold vs warm weather)
- One quinine tablet & they go away for days / weeks
- I understand quinine thins the blood so am wondering if this is circulation related
- You and I are the same age - that poses the possibility of it being age related (age related shows up on google searches)
- The cramps are damned awful - I end them by moving my leg back & forward in small patterns & they go away
- I have wondered if hypocapnia was involved (cramps are a symptom of lowered CO2 in the blood) ?
- Below is a comment on the effects of lowered CO2 in the blood ...
>>
"A low partial pressure of carbon dioxide in the blood also causes alkalosis (because CO2 is acidic in solution), leading to lowered plasma calcium ions and nerve and muscle excitability. This explains the other common symptoms of hyperventilation —pins and needles, muscle cramps and tetany in the extremities, especially hands and feet."
<<

(hyper ventilation is the usual cause for lowered CO2 - So I watch the epap-ipap gap setting on my machine as the wider
that gap gets the more likely CO2 blood level drops (due to increased volume of airflow as is typically triggered by an ASV when events occur).

I am wondering if ASV machines are more likely to actually trigger cramps, possibly more so for older users ?

Just some thoughts on that aspect

DSM

[JohnBFisher]

Also a couple thoughts on that.

I tend to get cramps when I fail to breathe. Darned if I know why, but if I'm having problems with increased central apneas, I also have more issues with cramping.

Second, I find that a banana every evening helps reduce my cramping. Sounds similar. Not muscle/lactic acid build up. Rather I just need to think "relax" at my muscles (and do some stretching) to get them to relax. I have less problems with cramping if I have a banana every evening. Potassium supplements don't seem to help. Go figure.

[OutaSync]

Dave,

I have my max set at 23 and it rides on that when I have an episode, sometimes for half an hour or so. I don't know how high it would go if I opened up my max. Not sure if I want to try it.

Bev

[dllfo]

DSM, I will have to sit down and think about your questions. In general, if I take my Quinine daily, I do not get cramps. If off the quinine 3-4 days, they start coming back. More on this later.

Bananas are supposed to be good for it, but I have eaten them to the point I am swinging from the trees and no help. I wish it would help, I am having to buy my own quinine as Obama's idiot doctors have now stated quinine is NOT for Nocturnal Leg Cramps. Quinine is over $10 each in the USA, about 36 cents (USD) each if bought elsewhere. I am buying the maximum amount allowed as they want to shut down US citizens from buying our meds from abroad. Sickening.

Outasync, I have not had any pain from the high numbers. As for hitting 23 vs 30, I don't think you would know it. A dr. at the National Jewish Hospital told me that 20 was like a hurricane in our throats, he could not imagine 30. I told him I was always asleep, did not feel it.

As far as I know, my breathing, or not breathing does not effect me. If I take the pills, no cramps. I was taking 3 a day, now one a day and no cramps.

Respiration and Opiates .... where to start? I was on opiates for about 6 years, highest amount did effect my respiratory system, nearly killed me. I was breathing very shallow and was so far gone they could wake me up. They shook me, yelled at me, the RN even asked me to squeeze his finger. I did. I KNEW he wanted me to wake up. I was alive inside my body, but I COULD NOT REMEMBER HOW TO WAKE UP!!!!!!! Scared me then, scares me now. BUT I was taking over 500mg of morphine a day as I recovered from oral surgery. BTW, they put the cannula in my nose and no luck. I was not breathing strong enough to actuate the Pressure Demand Regulator. When they put an oxygen mask on my face and turned the oxygen to continuous I finally came around. It took around 40 minutes. So Opiates CAN cause problems, complicate your life, even kill you I guess. Another time, I had a mouth full of Chicken Soup and could not remember how to swallow it. I started my own detox shortly after that. All these opiates were done under a pain med doctor's supervision.

So, yes, opiates can complicate your respiratory problems.

[dsm]

Dave

Your charts show epap = 5 and min ipap = 8 but your sig shows epap = 8 and ipap = 11.

Can you confirm what your current settings are ?

Cheers

DSM

[dsm]

John

Re bananas, tried that plus will also sometimes take calcium and magnesium tablets, but the one thing that always works is the quinine but for myself there are real concerns about taking it for more than a couple of days. Seem to recall somewhere that it can be as harmful as asprin if not used carefully (i.e. in continuous use & quantity).

Again, asprin (IIRC) is a blood thinner too.

DSM

[dllfo]

DSM-
The confusion may stem from my having 3 SV machines. I am currently using an EPAP of 8 and Min IPAP of 11, with max IPAP of thirty.

Outasync, I am curious, If the machine is really automatic, why set it at 23? Sort of like water seeking its own level.....if she needs 30, why not allow the algorithms to do what they are designed to do? Takes a higher pay grade than mine to figure some of these things out.

Wonder what the chances are that in a few years, all pressure settings will be full auto. No adjustments. Aren't we almost there now or did I sleep through the latest briefing?

[dllfo]

Slept almost 9 hours last night. I say "almost" because I was so tired I forgot to put one of my smartcards in the machine. Oh well. Better living through modern chemistry, or so they say.

Bottom line is I feel better.

[dsm]

Slept almost 9 hours last night. I say "almost" because I was so tired I forgot to put one of my smartcards in the machine. Oh well. Better living through modern chemistry, or so they say.

Bottom line is I feel better.

Dave,

Very pleased to hear that therapy is improving again. Just keep up your interest - are you seeing your R/T anytime soon ?

DSM

[dsm]

Dave,

I have my max set at 23 and it rides on that when I have an episode, sometimes for half an hour or so. I don't know how high it would go if I opened up my max. Not sure if I want to try it.

Bev

Bev

Can you post a recent chart of yours (esp where pressure went to your max). It is on topic & would be very helpful for the theme of this thread.

Tks

DSM

[dsm]

Dave,

Some more comments on your charts. In the 1st one posted, it is worrying that your machine all but stayed at max pressure for over an hour !.

Just to clarify this aspect. Look at Dave's breathing rate (during that period it was around 6-7 breaths per minute. His epap was set at 5 CMs and Ipap+ps took breath-in pressure to 30 CMs. Dave's machine was essentially cycling at 6-7 cycles per minute between 5 CMs breate-out and 30 CMs breathe-in. That is each time Dave breathed in (if indeed Dave was doing anything) the pressure went immediately from 5 CMs to 30 CMs in each breath.

That data can be interpreted to say that the machine may well have kept Dave alive at that time because for that hour there was next to no patient triggered breaths. The machine cycling between those to pressures appears to be doing all the work. The other aspect is what the minimum flow was while the machine was cycling up to 30 CMs each breatrh. The flow at its lowest was very small - appears to have been around 74 ml. Look between 2 & 3 & 4 on the timeline for Tidal Volume. That shows periods where Dave's tidal volume was as low as 75ml. His normal flow averages around 380+ (based on the 2nd chart & adjusting for its period of high pressures).

I would very much like to see another chart where Dave has his pressures set as per his sig (epap 8 & ipap 11). So Dave, if you can send a recent chart I'll post it for you.

DSM

[dllfo]

DSM, I will check the smartcard in the morning. It is 1:15AM now and I am battling with ATN. Hard to sleep with about a dozen "tooth aches". Meds will catch up in an hour or so and back to bed I hope. Not unusual for me to be up all night with these things. Frustrating, but there isn't anything I can do about it.