Crazy tired and caffeine doesn't help

randomgirl

New member
I have been tired for many years so I've been used to it. But lately, it has gotten a little worse. I don't like it because I have classes that I take Monday-Friday so I don't have the time to sleep all day anymore since I have to study and such. Also, I had a double lung and liver transplant almost 14 months ago so I thought my extreme tiredness would go away or at least decrease (it barely did). I have tried coffee, energy drinks, and sometimes both but they have no effect on me whatsoever. I can sleep right after drinking one of those. I have also tried protein energy bars and they have no effect. I don't know what else to do. I'm afraid I'll have to drop out of a class because I won't be able to do well if I sleep all the time. My iron level is fine but my nurse suggested I take iron pills anyways. Does anyone have any ideas?
 

Epona

New member
Yup, I would look into HPA-axis dysfunction, also known as "adrenal fatigue" in layman's terms. What may be happening is that your body is under so much stress (life stress plus post-transplant stress) that your ability to produce cortisol (which is the hormone that wakes you up in the morning and keeps you awake, mediates stress responses, and also has many other effects on the body, such as inflammation suppression) is all but nonexistent. Another sign of this may be out of control chronic inflammation, but since that's a CF thing in general, it may be hard to tell what's a result of adrenal fatigue (lack of cortisol) and what is the background level of CF inflammation. One thing you may be able to do is get a saliva test of your cortisol production throughout the day. Regular MDs usually do not order this test, so you may have to go to a naturopath or osteopath to get this done. You essentially spit out a sample every few hours for 12 or 24 hrs to measure the level of cortisol (and maybe some there hormones too) you are producing throughout the day. If our overall production is low, there are several things you can do to help. I would recommend listening to this podcast on the basics of adrenal fatigue and what to do about it: http://chriskresser.com/ask-the-rd-adrenal-fatigue-2 . Be aware that if you're on any immunosuppressing anti-rejection drugs, that you may need to look into the interactions of certain herbs that are indicated for adrenal fatigue, particularly string ones like licorice. Working with a qualified herbalist or naturopath may be important for you in this regard.

If your cortisol production seems to be fine (highly unlikely but possible), then I would look into thyroid dysfunction. Has your doc tested you recently for hypothyroidism? That should certainly be tested for and ruled out as a possible cause. Hypothyroidism causes tiredness, brain fog, fatigue, hair loss, etc. Even if your thyroid levels test normal, you may still be at risk for hypothyroidism since the underlying cause (autoimmune - Hashimoto's thyroiditis) may be present. I would refer you to Chris Kresser's website for more info on this. He has a whole free eBook on it: http://my.chriskresser.com/ebook/thyroid-disorders/ . There is also a good introductory article I came across on this topic: http://hypothyroidmom.com/hashimotos-your-body-is-not-supposed-to-destroy-itself-right/

According to the last article, one way to test for hypothyroidism is to get the obvious TSH tests done (the ones your docs do regularly) but in addition to get our thyroid antibodies done: Thyroid Peroxidase Antibodies (TPOAb) and Thyroglobulin Antibodies (TgAb). These are simple blood tests.

Also, I've been struggling with low energy also, and I recently started to take CoQ10 (100 mg once a day) and this seems to have really helped me. CoQ10 is a molecule needed for mitochondrial production of ATP, which is the main energy source for all of our cells in our body.

Even though you can't sleep all day, you are getting at least 8 hrs of sleep a night I hope? If not, that's of course #1 on the list of important things to do. There is no replacement for sleep - it is absolutely critical for health, even a mainstream MD will recognize that.

Hope some of this helps. :)
 

randomgirl

New member
Well I do sleep though...very often and probably too much. Thank you, Epona for all of your input. I have not heard of adrenal fatique but I'll have to look into that. Maybe I could mention that to my transplant coordinator who handles most things and see what she says about that idea. Good thinking about the thyroid problem too but I already have hypothyroidism and I'm taking medicine for it so now my levels are normal. I've heard of CoQ10 but I never knew what it was used for. And yes, I definitely get at least 8 hrs of sleep a night. Thank you for all of your help! I appreciate it a lot :)
 

Epona

New member
Great, I hope your transplant coordinator can address the adrenal fatigue issue. However, be aware that many MDs and mainstream health practitioners are not educated on the complex interworkings of the adrenal system, and so may poo-poo the issue of adrenal fatigue. You may then have to do your own research and/or discuss it with a naturopath, functional medicine MD, or a practitioner who has been educated on this issue. Hopefully your team is enlightened enough to give you some advice and maybe even order a cortisol test/hormone panel. A friend of mine also has hypothyroidism and very severe adrenal fatigue (the two are interlinked, Chris Kresser discusses) and is recently getting her salivary cortisol retested. An herbal tincture of licorice/ashwaganda/rhodiola is the typical rx for adrenal fatigue, but I would discuss these three with an herbalist to make sure none of them will interfere with your transplant drugs.

Be well.
 

randomgirl

New member
She may or may not take it seriously...we will see. I didn't even know there were herbalists. Thank you for all of the helpful info :)
 

randomgirl

New member
So I got some stuff checked out and my cortisol checked. Turns out my cortisol levels is "very very low" said the doctor. She told me I should talk to my endocrinologist about it which I did. But my endoc. doc didn't seem to care or think it was a big deal. Although she did say she would talk to my doctor about ordering Provigil. But she didn't want to find out the cause of the fatigue....she just decided to mask the problem with a drug to treat the symptom. Also, I haven't heard from my doc about the Provigil and that was 6 days ago. So...Epona...you DID solve my problem and you were right about my low cortisol levels...so YAY, good job and thank you very much for that!
 

Epona

New member
Yay, so happy you at least know what the problem is. But I did a brief search on provigil... holy crap girl, that is scary. If I were you I would stay away from that. It's a heavy duty stimulant and will not help you address the underlying problem at all - as you correctly said. In fact, it may make the whole thing worse since you're body is already telling you it's got an imbalance in hormones/brain chemicals affecting energy levels. To throw a stimulant into the mix could be dangerous. That's just my semi-uneducated opinion about it. A WAY safer route (and possibly more effective in the long run) would be to use herbal adaptogens to help your body naturally rebalance its cortisol levels. A tincture of ashwaganda and licorice will help, though the effect will not be overnight like it would by slamming your body with a stimulant. It may take a few weeks for you to notice the adaptogens working, but they build upon themselves and end up being more effective as they build up in the body. Rhodiola is an herbal stimulant that may help in the short term, that's why I added it to my adrenal tincture. Wish I could send it to you! But you could go to an herbalsit or find an adrenal fatigue tincture online. Or make your own!
 

randomgirl

New member
Hmm well it turns out that my cf doc prescribed Methylphenidate (Ritalin) on the lowest dose instead of Provigil. I tried it today and I was able to concentrate a little better and I wasn't as crazy tired. Then it wore off. My endocrinologist said that she thinks my adrenal glands are shot due to all the medicines I've been taking and stuff. But thanks for the herbal remedy ideas. I'll have to find out where I could get that stuff. Thank you for more good ideas :).
 

Epona

New member
Pharmaceuticals are a band-aid on a gaping wound with your symptoms. They will not heal you, only the natural way can heal. Adrenal fatigue is a result of chronic infection and/or chronic stress, and your meds may have contributed to the stress your body was under.

I hope you can find those herbs. Other than rest, sleep, reducing the stressors, relaxing/meditating, gentle exercise, eating well, eliminating sugars and refined carbs, nurturing yourself more... herbs are gonna be the best thing to allow you to cope with everyday life. It's what we've evolved to rely on.

If you can't find any local herbs near you, Urban Moonshine is a great company (my professor is the head herbalist there) and their energy tincture may help: http://www.urbanmoonshine.com/products/energytonic.html/

But remember, in order to fully heal and get your stress hormones back to normal, it's not going to be overnight and it's not going to happen from a magic pill. Herbs are reliable, but these tonic herbs works slowly, over a few weeks, so be patient with them and you'll have to stay on a regular dose for a long period until the issues completely resolve.

Be well.
 

randomgirl

New member
Yea, but I'm such a calm person and I almost never feel stressed. So I guess my body was more stressed than my mind...I don't know. Anyways, there are a few stores with herbs near me since I live in one of the biggest cities. But thank you for the site. Alrighty, I'll wait a few weeks to expect any change. Thank you so much for all of your insight and helpful info!
 

Lance2020x

New member
I felt exactly like you my whole life. I honestly just thought it was normal. I was diagnosed ADHD, put on Adderal etc. but would drive home from work, park in front of my apartment and fall asleep in the car for 45 minutes, have barely enough energy to do therapy treatments, wake up feeling like I'd gotten 2 hours of sleep, go have 2 cups of coffee and just repeat everything.
I'd fall asleep during conversations sometimes....

Then someone visiting from out of town was talking to me and I fell asleep during the conversation and they said "Blake you fell asleep then stopped breathing and 'snorted' yourself awake a few times... it was kinda scary. You should go to a sleep specialist."
So.... I ended up getting a sleep test and they discovered I had Sleep Apnea. They said normally it's really rare in someone my age, but considering I had CF they weren't surprised?
So they did the overnight test and discovered that I would stop breathing and jolt awake (without realizing/remembering it) an average of 11 times an hour. So they told me most of my life I'd likely reached REM sleep only a few times a year.

They put me on a CPAP machine and my life completely changed... I dream almost every night now (I would dream MAYBE twice a year before), wake up feeling RESTED and awake (that was UNHEARD OF) and many of my ADHD symptoms were suddenly gone. I can't remember the last time I needed (or took) a nap, while before the CPAP I literally couldn't avoid taking a nap.

I'd highly recommend you get a sleep test.... at the very least you'll then KNOW, and can check a possible issue off the list.
 

randomgirl

New member
Wow...that sounds like narcolepsy when you fall asleep randomly like that. But I guess not since you had the sleep study. But that's interesting. I've never snorted or had breathing problems in my sleep like that. 11 times an hour is crazy. I'm surprised no one you lived with would tell you that you did that. I actually told my cf doctor about my sleeping problems. I told her about my narcolepsy-like symptoms (except for cataplexy) like hallucinations and being awake but unable to move and dreaming as I start to fall asleep sometimes. So she told me about a sleep specialist so maybe later after my classes end I'll get that done. That's awesome that you got your sleeping and ADHD problems fixed with a CPAP though. Thank you for the advice :).
 

Melissa75

Administrator
I told her about my narcolepsy-like symptoms (except for cataplexy) like hallucinations and being awake but unable to move and dreaming as I start to fall asleep sometimes.

I had these exact problems pretty hardcore when I was under slept and over caffeinated in college. Here's the interesting part: it comes back (decade and half later) when I am on flouroquinolones like levaquin or avelox or cipro. Lucid and paralyzed dreaming at beginning or sleep cycle. Very creepy.
 
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