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(06-21-2023, 08:49 PM)cmpman1974 Wrote: I have very low testosterone (total in the high 100s). I know it has risks being on it, but it may be time to try supplementing. Some of the deficiency has to do with being quite overweight. I'm so tired I can't function many times though so my choices are dwindling. The key to improving anything is focus/clarity for long-term success. It's a vicious circle.
cmpman1974, with your current situation, I certainly empathize. I failed to mention that without counting calories, starving myself, or forcing myself to do exercises that I couldn't, cleaning up my diet enabled me to shed 1/3 of my body weight, which is in excess of 100 pounds. No, I did not pay for any dieting program. When I was that overweight I was lacking in both physical or mental energy and it felt hopeless. The weight had already torn the meniscii in one of my knees and was working on the other, which made any amount of exercise painful, intolerable, and that included just taking walks. Losing all of that weight certainly helped with my lung function - I used to have to keep the head of the bed significantly elevated to sleep at night - and I've had a lifelong history of lung ailments: Apnea23's comments may very well be applicable if there are lung-related issues.
Cleaning up the diet can help one's systems function better and may be able to help with your testosterone levels. I'm not at my goal weight yet, but I can now sprint around the back yard with our new puppy and I'm working on closing out my 6th decade on this great big ball of mud.
Again, I am not advocating any one diet and I wouldn't tell someone what they should eat because I've had so many life-long allergies that what may be appropriate for me may not be so for someone else. However, I got fed up with doctors. After repeated hospitalizations, having to get my lungs cleaned out (bronchoscopy with lavage), being prescribed medication upon medication until I was on more than 20 prescriptions, there just wasn't enough joy left in my life to overcome the misery and I found it exceedingly irksome when I would be told to lose weight and then would be given dietary advice that would result in weight gain. I'm now off of the vast majority of those medications and hope to be free of all of them at some point.
If it weren't for this forum and the helpfulness of the moderators and others, for whom I am very grateful, I may still be looking for ways to achieve positive, life-changing outcomes. All of the physiological improvements in my life started here, with a burning desire to achieve any modicum of refreshing sleep. After decades of not being able to sleep, every tidbit gleaned from this community lead to another improvement, and I now have nights in which I can sleep without medications and most of my days are energy-filled without stimulants. For this, I am so very grateful to this community.
(07-05-2023, 12:20 AM)Apnea23 Wrote: Have you had a lung CT scan OP?
I believe we have something in common here.
After 2 years on CPAP I have discovered it has been a red herring - underlying lung pathology was the cause all along.
Non smoker. 40 years old.
Have you monitored your o2 during the day? I have in the last few days and it's worse than during my sleep. That was a surprise. I recently made a thread called when UARS is lung disease, you may find it interesting. I'm continuing to update it. My daytime O2 is between 93-97% most of the time. The major desaturations seem to occur at night, but I don't believe always in line with OSA events. Yes OSA events are a cause of some, but not all.
I have been taking Dexedrine (D Amphetamine) for ADHD symptoms since last year, and guess what - it brings my heart rate down, blood pressure down, calms my system down. This is contrary to all literature.
My guess? Because it stimulates the medulla and respiratory system, taking the load off your heart to keep your oxygen levels up. Within 30 minutes of taking, my heart rate lowers by 15-20 BPM. My daytime heart rate is around 60-80 BPM most days unless I'm feeling ill. If I push myself, of course it'll increase. Even when I do, my muscles will give out way before any substantial increase in heart rate. That has been an issue for 15+ years. Muscle spasticity/weakness at times.
Imagine your system permanently in panic mode pumping your heart to keep oxygen up, and then all of a sudden it doesn't need to do that. That's what normal feels like. No anxiety, heat intolerant disaapears, calm and focused mind.
Perhaps what you really need is a respiratory stimulant but first, investigation of your lungs if you haven't already. Sorry I'm not familiar with your story but your question about stimulants and Sleeprider mentioning your o2 desats yesterday really stood out to me.
To clarify, since finding out about my lungs I have stopped stimulant medication for the mean time. It lost it's effectiveness and now I know it isn't the /right/ kind of stimulant. But it helped confirm what I now know to be true.
Do you have any lung history - from your very early or younger years, any serious infections, preterm birth, never been athletic, last in sports races, breathless/sweaty much worse in the heat etc. How do you feel when you're in a swimming pool, does it feel like your lungs are being crushed - very deep breaths needed etc. I was never 'athletic' and spent most of my childhood and adult life on the obese side. I did do a lot of bike riding and had a period of my life for 2-3 years I was big into working out, running, etc. I started to experience muscle issues, fatigue and more which put that to an end gradually. I never swim so not sure about that. I have bad Chronic Venous Insufficiency in my lower legs now. When in better shape, I'd ride my bike 10-15 miles a day. Not I'd be lucky to ride 10-15 ft.
My story shows that sometimes the truth has been staring us and our doctors right in the face all along, and noone bothered to check the primary system that oxygenates us.
My lung scan was a desperate last resort that I organized myself privately after all other investigations and experiments failed, and I didn't expect anything to come of it.
Not one medical professional despite all of my symptoms once considered my lungs. Doctors with 40+ years experience. Even upon listening to my lungs, they didn't hear anything untoward.
I've never had a formal lung scan, but did have a CT of the chest in the ER room (if the same). I have pulmonary hypertension and went through a few cardiac catherizations to confirm right side heart pressures. Sometimes I do feel the pulmonary doctors may miss something and I'm doing my best to aggressively follow-up.
All the best,
Pete
Pete, see my answers in red within your original response.
(07-05-2023, 09:57 AM)Synestheat Wrote: cmpman1974, with your current situation, I certainly empathize. I failed to mention that without counting calories, starving myself, or forcing myself to do exercises that I couldn't, cleaning up my diet enabled me to shed 1/3 of my body weight, which is in excess of 100 pounds. No, I did not pay for any dieting program. When I was that overweight I was lacking in both physical or mental energy and it felt hopeless. The weight had already torn the meniscii in one of my knees and was working on the other, which made any amount of exercise painful, intolerable, and that included just taking walks. Losing all of that weight certainly helped with my lung function - I used to have to keep the head of the bed significantly elevated to sleep at night - and I've had a lifelong history of lung ailments: Apnea23's comments may very well be applicable if there are lung-related issues.
Cleaning up the diet can help one's systems function better and may be able to help with your testosterone levels. I'm not at my goal weight yet, but I can now sprint around the back yard with our new puppy and I'm working on closing out my 6th decade on this great big ball of mud.
Again, I am not advocating any one diet and I wouldn't tell someone what they should eat because I've had so many life-long allergies that what may be appropriate for me may not be so for someone else. However, I got fed up with doctors. After repeated hospitalizations, having to get my lungs cleaned out (bronchoscopy with lavage), being prescribed medication upon medication until I was on more than 20 prescriptions, there just wasn't enough joy left in my life to overcome the misery and I found it exceedingly irksome when I would be told to lose weight and then would be given dietary advice that would result in weight gain. I'm now off of the vast majority of those medications and hope to be free of all of them at some point.
If it weren't for this forum and the helpfulness of the moderators and others, for whom I am very grateful, I may still be looking for ways to achieve positive, life-changing outcomes. All of the physiological improvements in my life started here, with a burning desire to achieve any modicum of refreshing sleep. After decades of not being able to sleep, every tidbit gleaned from this community lead to another improvement, and I now have nights in which I can sleep without medications and most of my days are energy-filled without stimulants. For this, I am so very grateful to this community.
I have a feeling your path probably is the ONLY path left I have to make my life better possibly. That is becoming quite obvious. Believe me, I fully get the 'fed up with doctors' part too. I have been to everyone and tried a lot, but at the end no one is able to help you more than yourself if dedicated.
07-07-2023, 12:04 AM (This post was last modified: 07-07-2023, 01:09 AM by Apnea23.)
RE: Stimulants - Any Benefits?
"I have pulmonary hypertension and went through a few cardiac catherizations to confirm right side heart pressures. Sometimes I do feel the pulmonary doctors may miss something and I'm doing my best to aggressively follow-up"
I would focus all energy on this.
Have they ever investigated and told you what is responsible? If not, that is shocking.
Lung diseases such as emphasema, but also many other causes can be responsible for PH and subsequent right sided heart pressure and ultimately failure if left untreated. That's not to say the heart isn't primarily causing the knock on effect with your lungs not receiving oxygen.
It's an oxygen issue due to your heart and/or lungs. Have you ever experimented with oxygen during the day during activity?
Please find the underlying pathology ASAP.
I find it very interesting that your muscles give out before any substancial heart rate increases. The point of heart being raised during exercise is to provide increased oxygen to your system. That's worrying, and may point to your heart being the cause of lack of oxygenation to your body, lungs, tissues, muscles..
I wouldn't settle for anything less than a thorough and extensive exam of your heart and lungs!
By the way, I just looked through a few of your threads. Have you tried 3L/min o2 without ANY CPAP at all yet? I know it sounds absurb. Please give that a try and monitor your o2 overnight.
I no longer need CPAP now I'm supplementing. It was all a red herring. I own a Vauto, ASVAuto, Autoset. The last 2 years of PAP therapy was totally misguided. Now the underlying issue is resolved during sleep with o2, my airways are good. Daytime to resolve next..
07-10-2023, 09:39 PM (This post was last modified: 07-10-2023, 09:50 PM by cmpman1974.)
RE: Stimulants - Any Benefits?
I was looking back through my medical records tonight and noticed I did have a lung scan in June 2017. It must've been done as part of my Pulmonary Hypertension work-up. I have attached the findings. It doesn't seem like anything major was discovered. All other things looked at as causes of PH were negative so I was diagnosed with Pulmonary Arterial Hypertension of unknown origin (worst kind really from my understanding).
I have never used oxygen during the day or without my BPAP machine. I think going w/o my BPAP would be a bad, bad move for me. I have a very narrow airway and am quite overweight. I have no doubt OSA is a huge issue for me and may be even with substantial weight loss due to my anatomy.
07-10-2023, 11:52 PM (This post was last modified: 07-11-2023, 01:17 AM by Apnea23.)
RE: Stimulants - Any Benefits?
Ok,
I think you need o2 during the day.
Monitor your daily spo2 and all will become clear.
Your daily symptoms will dissapear.
We require more o2 during the day moving around. If you need it during the night, you will absolutely need it in the daytime.
PH doesn't come from nowhere. You are not getting stable o2 24/7 and your body has to work hard for it including your lungs and heart.
This may be the cause of your obesity and drive to eat your whole life - if there are underlying heart or lung issues. Its an endless cycle you may start to break immediately and effortlessly with stable nocturnal and daytime o2.
If you get heartburn/indigestion/acid reflux during the day, especially after meals - another red herring. This is an adrenalin dump to rescue dropping o2 in the postprandial period after food where o2 saturation plummets for those with issues stabilising o2 already. The mechanism is simple - increase heart rate and blood pressure immediately.
You can verify this with spo2 monitoring.
The rabbit hole is deep.
CPAP is often a similar red herring.
Lack of o2 during sleep causes hyperventilation, obstruction. The harder you suck, the more likely collapse of the airways is. With sufficient gentle supplemented oxygenated air, your airways may not need opening up or need extra air to be pushed in, essentially assisting with o2 but poor in comparison to actual o2. Why is why many still suffer on PAP. Especially sleep fragmentation, arousals.. yadda. Most of which will happen during REM.
07-11-2023, 01:44 AM (This post was last modified: 07-11-2023, 02:07 AM by Apnea23.)
RE: Stimulants - Any Benefits?
Oh and after reading the report, you absolutely need a follow up on your lungs as suggested in the report. It looks like it was primarily to rule out PE.
Have you suffered your whole life with issues since you can remember?
Overeating, breathlessness etc? Any nocturnal bed-wetting and/or puddles of drool from mouth breathing on your pillow as a child? A really difficult time swimming vs other kids?
The reports indicated a ventilation mismatch. Follow it up ASAP. This is a 24/7 probably lifelong issue leading to all of your pathologies and symptoms, from overeating to sleeping properly and everything inbetween.
The 6-year old study you posted actually confirms a history or the V/Q mismatch we have been discussing in this thread for some time. This explains the hypoxemia you have consistently shown without supplemental oxygen. The real question is whether that issue has progressed. With that history, and your problems with maintaining an normal SpO2, there should be plenty of reasons to follow-up with a Lung Scan Ventilation Perfusion study to see if this has progressed. It seems pulmonary embolism was not identified as a cause in the 2017 study, and if progression is slow, that probably remains the case. In any event, your need for supplemental oxygen should be medically confirmed and evaluated. The linked article notes some compelling symptoms consistent with your complaints and describes the diagnostic process with a perfusion/ventilation lung scan. https://www.verywellhealth.com/what-is-v...ngs-914928
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(07-11-2023, 01:44 AM)Apnea23 Wrote: Oh and after reading the report, you absolutely need a follow up on your lungs as suggested in the report. It looks like it was primarily to rule out PE.
Have you suffered your whole life with issues since you can remember?
Overeating, breathlessness etc? Any nocturnal bed-wetting and/or puddles of drool from mouth breathing on your pillow as a child? A really difficult time swimming vs other kids?
The reports indicated a ventilation mismatch. Follow it up ASAP. This is a 24/7 probably lifelong issue leading to all of your pathologies and symptoms, from overeating to sleeping properly and everything inbetween.
Yes overeating always for sure. It's been an issue since childhood. Never could or able to swim. Always felt like I sink like a rock. Total mouth breather - always. No nocturnal bed wetting. I see a new pulmonologist tomorrow. I hope for once someone takes me seriously. I try SO damn hard to be prepared.
