Stimulants - Any Benefits?

[cmpman1974]

I do not seem to get much feedback on my other post anymore so figured I'd start a new one on this topic.  Does anyone here use stimulants to successfully help with fatigue and be more functional?  If so, which ones do you take?  I'm at a crossroads with no real assistance to improve my situation.  Supplemental O2 brings SPO2 up, but it has zero impact on energy levels.  My ability to accurately assess SPO2 drops is tough.  There are lots of 'theories' thrown out, but none have resulted in improvements energy wise. If I had to guess, I get crap REM sleep and probably a disproportionate amount of it.

I feel like a walking zombie many times during the day.  Based on my reading here, I'm certainly not an isolated case.  It seems like the majority struggle regardless of this 'miracle' CPAP/BPAP treatment.  It's kind of messed up.   Based on how hard it is to get physician's to look at detailed sleep data/OSCAR reports, I'm honestly surprised experts like LeftyLanky27 aren't multi-millionaires.  He should be rolling in the dough.

[SuperSleeper]

Wow, there's likely hundreds of stimulants one could use to get more energy or fight mental or physical fatigue.

Hopefully others can chime in, but my preferred stimulant is caffeine, preferably in coffee.   

I just have to stop drinking it by early afternoon, otherwise I have trouble getting to sleep at night.

I've also recently starting taking Taurine supplements - 1000 mg per day.  I've noticed a bit of energy increase, but some say that you need to cycle it on and off, since your body gets used to it.  I should know more after a few more weeks of taking it.  Taurine is one of the active ingredients in many "energy drinks" like RedBull and Monster drinks.

Much of my lack of energy might be simply due to getting older, unfortunately.    

Regarding analysis of OSCAR data, the experienced folks here usually provide excellent advice if you post your OSCAR charts and have a bit of patience and willingness to interact and supply information to help in that analysis.  LeftyLanky27 does the exact same thing, albeit, it's quicker, and he charges $300 for what folks do here for free.

[cmpman1974]

Supersleeper, I have posted many, many OSCAR charts here in my other thread.   Basically my AHI figures are pretty low (0-2).  I have some issues with high leak rates intermittently, but working endlessly on it.  My biggest issue is SPO2 desaturations despite reported excellent AHI numbers.  I have had assistance from several great members here.  The stimulant question is a new one.  My doctor recommended a pharmaceutical option to offset the fatigue.  I am not thrilled about the idea, but maybe I need to consider it. In general without supplemental O2, I spend 1.5 - 2.5 hrs a night under 90% SPO2.

[SuperSleeper]

Yep, I saw your therapy thread.  Glad you got some good advice there. 

What specific stimulants or supplements have you considered or tried so far?  Some of the ones often used include B-complex vitamins, Caffeine, Carnitine, Ginseng, Guarana & Taurine.

I also believe that age can be a huge factor in overall energy levels, and fighting the problems associated with that can be a huge struggle.  The truth is that older people tend to have less energy historically no matter what.  Some have found that Testosterone injections helped, if one's levels are currently on the low end for some reason.


I'm wondering did you ever suffer from a case of COVID?  Personally, I did notice that after suffering from a pretty bad case of COVID in 2021, my energy levels fell way, way down after that.  Sort of like the virus did some sort of permanent damage to my system.  I did recover quickly from the severe symptoms using Ivermectin (read about it here), but the longer-term energy issues remain.  At some point, I thought I had what some have called "Long COVID" - meaning an extended period of low energy levels and general malaise type feeling.  I am still somewhat in that phase apparently, which is why I'm also searching for solutions.  I have taken occasional "booster" doses of Ivermectin, which seem to help for a few weeks, but the lack of energy quickly returns after that.

Over time, I've simply "powered through" my more intense lack-of-energy times.  Some days are better than others.

Good luck with those O2 desats.  Trying to find the exact cause must be a major difficulty.

Anyway, just some rantings and random thoughts from an old man that probably won't help anyone.  I can empathize with your plight-- it's definitely frustrating.  

[Sleeprider]

Supersleeper’s experience with long lasting fatigue from Covid mirrors my own from neuro Lymes disease. In 2013 I was admitted to the hospital with stroke like symptoms that progressed into transient limb and abdominal weakness, bilateral Bell’s palsy, and a host of complications and pain for which no one had an explanation. Finaliy after several MRIs, CT scans ,Doppler pulse tests and a battery of blood testing a cervical spinal tap revealed I had Lyme meningitis. At age 59 this was the end of my career. I was fired for non-performance and unable to complete simple tasks that were formerly routine. I still suffered from chronic fatigue, abdominal and other weaknesses for months, and perhaps years. I learned we lose track of what is normal and who we are under these circumstances. I’m sure you feel the same. I think I’m still affected to some degree but my new normal is much to do about being older now. I actually fired my last consulting client this past week. I’m retired and done with it.

You’d never guess my career was giving advice to others for pay?

[cmpman1974]

Supersleeper’s experience with long lasting fatigue from Covid mirrors my own from neuro Lymes disease. In 2013 I was admitted to the hospital with stroke like symptoms that progressed into transient limb and abdominal weakness, bilateral Bell’s palsy, and a host of complications and pain for which no one had an explanation. Finaliy after several MRIs, CT scans ,Doppler pulse tests and a battery of blood testing a cervical spinal tap revealed I had Lyme meningitis. At age 59 this was the end of my career. I was fired for non-performance and unable to complete simple tasks that were formerly routine. I still suffered from chronic fatigue, abdominal and other weaknesses for months, and perhaps years. I learned we lose track of what is normal and who we are under these circumstances. I’m sure you feel the same.  I think I’m still affected to some degree but my new normal is much to do about being older now. I actually fired my last consulting client this past week. I’m retired and done with it.

You’d never guess my career was giving advice to others for pay?

Yes I remember you mentioning neuro-lyme.  My life got destroyed in 2007 after a trip up North in Michigan.  I was in a wooded area visiting an old friend.  I don't remember a tick bite, but came back home and a week later all hell broke loose.  Got so sick I was literally trembling from feeling cold/sweaty, terrible head pressure, weakness, and so much more.  I had to stop my full-time career (like you I was into consulting / analytical work).  I was in the hospital six times in six months.  Life never was the same again.  Fatigue was horrendous and then in 2015 I got Leukemia to top it off.  They were unrelated.  I never had an absolute positive Lyme test, but many 'questionable' labs and possible tick-borne coinfection  I was literally so ill I couldn't drive anymore and could barely handle being a passenger in a car.  it was frightening.  Three months into this nightmare I saw an Infectious Disease doc and his thoughts / questions related to.....having any marital issues with your spouse?  WTF?   It was so ridiculous.  I was a high-achieving worker excelling at everything I did and woke up one day and decided to literally toss everything I worked so hard for away in an instant?  Ironically, the only time i experienced similar severity of symptoms again was when I fought central line infections due to having a port in my chest to get chemotherapy and blood transfusions. 

I'm so sorry you went through that much Sleeprider.  I had every test you had done over the years and more. You are very right we forget our baseline when being ill for a long time. I could never in a million years do the things I did 15 years ago. That is just a distant memory. It saddens me to think about what was lost. Lyme is truly an evil disease and for the most part not even acknowledged in many areas of our county.

[cmpman1974]

Yep, I saw your therapy thread.  Glad you got some good advice there. 

What specific stimulants or supplements have you considered or tried so far?  Some of the ones often used include B-complex vitamins, Caffeine, Carnitine, Ginseng, Guarana & Taurine.

I also believe that age can be a huge factor in overall energy levels, and fighting the problems associated with that can be a huge struggle.  The truth is that older people tend to have less energy historically no matter what.  Some have found that Testosterone injections helped, if one's levels are currently on the low end for some reason.


I'm wondering did you ever suffer from a case of COVID?  Personally, I did notice that after suffering from a pretty bad case of COVID in 2021, my energy levels fell way, way down after that.  Sort of like the virus did some sort of permanent damage to my system.  I did recover quickly from the severe symptoms using Ivermectin (read about it here), but the longer-term energy issues remain.  At some point, I thought I had what some have called "Long COVID" - meaning an extended period of low energy levels and general malaise type feeling.  I am still somewhat in that phase apparently, which is why I'm also searching for solutions.  I have taken occasional "booster" doses of Ivermectin, which seem to help for a few weeks, but the lack of energy quickly returns after that.

Over time, I've simply "powered through" my more intense lack-of-energy times.  Some days are better than others.

Good luck with those O2 desats.  Trying to find the exact cause must be a major difficulty.

Anyway, just some rantings and random thoughts from an old man that probably won't help anyone.  I can empathize with your plight-- it's definitely frustrating.  

I tried one prescription medicine in 1997 and collapsed from being awake 60+ hours.  I was taken via ambulance to the hospital.  I think the med was called Cylert.  I have tried many supplements including Carnitine, Vit B-12, B-Complex, Vit D, caffeine of course, and many, many others.

I have not had COVID fortunately and hope it stays that way.  I had a life changing impact after getting mononucleosis in the late 90s.  That was the start of a health downturn and many issues.  It hit me hard. That is very interesting Ivermectin has an impact for you.  I only once had increased energy and that was after being given a very aggressive anti-parasite medicine from a practicioner.  Like you, it didn't last, but it was so strange having clarity for a while.  

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.

I also had a Bone Marrow Transplant for the Leukemia 7 years ago. That doesn't help with energy levels either. I've had 4 bouts of pneumonia, RSV, mono, and more over the years. Hashimotos/hypothyroidism, etc. etc.

I'm with you on the powering through part.  That's the story of my life, yet there is not enough power to function to a normal degree.  I just do my best and try to tell myself that.

[SuperSleeper]

I wish I had answers, cmpman1974. 

I guess all I can offer is some degree of understanding and empathy.  It's really a pain the posterior to have a severe lack of energy for which one can't find a solution.  Funny you should mention having Mono.  I had it as a teenager (twice) and sometimes in the morning hours, my current lack of energy and feeling mimics what I remember feeling like when I had Mono.

It's hard to go from this:    

To this:  

About all we can do is throw potential solutions at the problem, hoping that one of them works eventually.  And, in the process learn to live with it (as we've all seem to done now for quite a while).

At least we're all somewhat miserable together-- you're not alone.  
 

[Synestheat]

* Above *

Once upon a time, I had a very successful career reminiscent of the description of yours. With a long history of sleep- and wake-related diagnoses - and several other medical-related issues -, quite a few stimulants have been prescribed for me over a number of decades beginning with Cylert many, many moons ago. Not that I can recall them all, but the power and dosage of the stimulants would continue to increase with prescriptions such as Ritalin, Wakix, and Sunosi to name a few more; often, some of them would be prescribed simultaneously at maximum dosage to attempt to overcome the overwhelming sleepiness during the day and driving.  My doctor actually screamed at me once, "You're going to die!" meaning that I needed to give up my career.

Arguably, some of the stimulants would proffer some benefits, but those benefits were often short-lived and fraught with undesirable side effects.  Additional irritability in someone that already has a Type A personality is undesirable, but other physiological side-effects were even worse with highly-elevated blood pressure, racing pulse,  and paranoia being just a few.

The stimulants resulted in the addition of even more nighttime medications that were to dull the side-effects of the stimulants and actually afford me some modicum of sleep at night.  It became a never-ending, vicious cycle that amounted to nothing more than a dog chasing its tail and everything just getting worse.  And, it cost me everything I had built including my confidence.

I dug deeply into this forum and its associated wiki to better understand and take control of my sleep, which enabled me to target medications one-by-one that I told the doctor we would get rid of next.  After another sleep study, I also dictated what brand and model of xPAP I would be prescribed and the prescribed settings that would be applied by either the DME provider or me.  As my sleep improved, my cognitive abilities improved along with my ability to target and eliminate medications.

The biggest improvement in energy was resultant of me cleaning up my diet.  I figured if I ran my body on the best fuel it would perform optimally and that proved to be true.  I'm not proselytizing for any particular diet, I'm just sharing something that worked exceedingly well for me.  The first step I took was to eliminate everything with an ingredient list in favor of single-ingredient foods.  Now, I can even work outside all day in the heat and my body has a steady fuel supply and I can sit and read a book without almost immediately falling asleep.  All of this has improved my sleep at night as well.

Resultant of the above, instead of taking 7-8 medications daily for sleep / wake issues, I often need neither.  On occasion, I will take maybe one of those medications for sleep.

I hope this is helpful.

[Apnea23]

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.

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.

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.

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.

All the best,
Pete