~ Background ~
26M. 6'0", 135-140lbs. Very healthy eater (cook 3 fresh meals a day). Was very active (mountain biker). Not on any medications. Currently taking vitamin D, K2, Benfotiamine, B12, digestive enzymes (w/ Betaine HCL), and some magnesium. Potassium and glycine have always made me feel very fatigued and lethargic for over 24hrs. I have reoccurring SIBO and Candida (got rid of them a while ago but they're back now), high oxalates, some methylation problems (heterozygous MTHFR gene mutation and low SAMe), some high bacterial & fungal markers, and mostly normal hormone levels besides low FSH (but normal LH), very low IGF-BP3 (but normal IGF-1) and low vitamin D. These were all tested before the IVs. I've also always had difficulty gaining weight despite eating a normal amount. In 2021, I took very high dose Betahistine for 2 weeks and then stopped cold turkey. A day later, I developed chronic extreme neurological sleepiness / numbness / suppression, lack of alertness, and some other debilitating issues, which is part of the reason I was seeing the doctor who gave me those IVs.
~ How it Began ~
This all started for me about 6 months ago, after doing some IV treatments (glutathione, COQ10, ALA, FastVitamin, all in separate IVs. Also did a course of NAD+ a month prior), recommended by my doctor for other chronic problems I was dealing with. None of them seemed to help with anything except for maybe the glutathione a tiny bit. I was in the middle of a COQ10 infusion when I started to feel like I could pass out, like my brain was just going to shut down. I had to reach over and turn the drip rate dial all the way down myself. I remember they set the drip rate a little higher than they probably should have. A week later, I went in for a FastVitamin IV (methylated b vitamins, magnesium sulfate, some amino acids, etc.). About 5 minutes into the IV, I started getting that same feeling so I reached over and turned down the dial again. Driving home was scary that day. Ever since then, I've been dealing with these symptoms:
~ The Symptoms ~
* Weird feeling like my brain wants to shut down or pass out
* Extreme fatigue and neurological sleepiness. Body often feels super heavy and slow, like my brain doesn't want to move my body.
* When I try to go to sleep, it feels like I'm going to pass out instead of fall asleep (this has improved)
* Light tingling/zinging/burning sensation on top of head sometimes
* Sometimes some anxiety
* High heart rate while standing / walking (up to 130 sometimes just walking around the house)
* Headaches at night sometimes (I never used to get them. These have improved)
* Lower body temp (used to be 99°, now 97.3°), but head feels hot sometimes
* I had one week where I really struggled to breath. It felt like my body had so little energy that it couldn't even do basic functions like that. Everything from my brain down to my gut just felt like a heavy inactive lump
* Digestion feels worse (this has improved)
* Chest pain and/or pressure sometimes (echocardiogram + heart monitor showed heart is perfectly healthy. This has improved a good bit)
* Nasal passage often feels blocked / swollen
* More susceptible to panic attacks (never ever had any trouble with that before, not even close)
~ Things That Help ~
I've increased my salt intake which seems to help a tiny bit. Ice packs on the head also seems to ease some of the symptoms a bit when they're bad. My doctor prescribed a Fisher Wallace stimulator, which basically just encourages calming brain waves. This has allowed me to sleep, and has reduced the restlessness and heart rate a little.
~ Things That Make it Worse ~
Any kind of physical or mental exertion seems to make symptoms worse for the next couple days. Doing anything in the heat/sun is the worst, even if it's just a mellow walk. Before this happened, I could do intense mountain bike rides in humid 95° weather and be fine the next day. Now, I have to be super conscious about every little move I make. Something as simple as watching the wrong TV show can trigger symptoms. Eating also used to make symptoms worse, but that part seems to have gotten better. Symptoms seem to worsen after I do things that increase endorphins or adrenaline (talk and laugh with family, watch something that gets me excited, listen to music I like, have an argument, etc.)
Do any of you have some ideas for what could have happened? I basically can't do anything and am stuck in a chair for the majority of the day. Seems like many of the symptoms match up with those of dysautonomia, but I know it's more complex than that because I still have symptoms even when my heart rate has been pretty good all day, and my blood pressure has been fine every time I've checked it. My neurological PT doctor thinks there may be some weird things going on with blood flow, and that a small piece of it might be dysautonomia, but he's still not sure. Hopefully those IVs didn't cause some kind of permanent damage.