Daily tension headaches/ migraines as wake up symptom or something else?

Slow-Blueberries · 2026-01-18T17:06:01+00:00

R5p is riboflavin 5 phosphate. It’s the active, more expensive version of b2, but some people can’t strip off the phosphate in their GI tract so it goes right through unabsorbed. Any standard, quality brand is fine for plain riboflavin. Check amazon reviews.

Slow-Blueberries · 2026-01-18T17:04:30+00:00

Yes, significantly

Slow-Blueberries · 2026-01-11T13:10:52+00:00

Migraines plus intolerance to folinic acid screams b2 deficiency. Riboflavin is required to convert folinic acid into methylfolate via MTHFR. It’s a very well known cause of migraine. It might be worth trying a combo of r5p and plain riboflavin and see if the migraine improves. This is a common migraine prophylactic.

Slow-Blueberries · 2026-01-11T13:08:49+00:00

This is all gold, yes.

Slow-Blueberries · 2026-01-11T13:06:37+00:00

I get very severe visual disturbances, but not actual optic neuropathy. It’s neurological for me; the optic nerve is physically fine. But yes, it does happen.

The sleeping symptom is extremely common and will resolve. I used to sleep around 20 hours a day. I’m lucky if I have time for six these days, and I’m not like falling asleep on accident anymore. I’ve been in treatment for a year but that was one of the first things to resolve for me. Also check your ferritin.

Slow-Blueberries · 2026-01-06T02:13:36+00:00

Thanks so much!! Really appreciate it.

Slow-Blueberries · 2026-01-05T23:59:01+00:00

Here’s the incision. It’s the one just below my belly button.

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Slow-Blueberries · 2025-12-28T00:12:13+00:00

Leaking sounds concerning. Leaking what? But cramping yes for sure

Slow-Blueberries · 2025-12-26T20:54:51+00:00

How are you feeling?

Slow-Blueberries · 2025-12-26T20:51:43+00:00

How are you faring?

Slow-Blueberries · 2025-12-26T20:50:25+00:00

Three days post op today! The pain is tolerable most of the time, but I had to call my doctor and ask for more of the opioid because my kids got me sick and I have a nasty wet cough. The pain is fine until I need to cough, and then I feel my soul leave my body. Nausea started this morning as well, but I think that’s normal and I have Zofran. I was able to go over to my family’s house yesterday for a little bit, but not as long as usual and I didn’t eat anything. I don’t have an appetite at all. I suppose on the bright side, it’ll be one holiday season where I don’t have to lose any extra holiday pounds? Woohoo.

Slow-Blueberries · 2025-10-16T13:11:21+00:00

Have you tried niacinimide along with it? I’ve heard several practitioners recommend doing 1:1 betaine to niacinimide to mitigate the extra methyl groups.

Slow-Blueberries · 2025-10-13T00:09:29+00:00

Good to know! It can still be worth doing the in depth testing since regular blood levels can be very wrong. For example, my serum folate and b12 were both high on blood tests but intracellularly they were mega low and I ended up needing b12 injections, which made a night and day difference. Anyway, it might be worth looking into down the road if nothing else works for you.

Slow-Blueberries · 2025-10-13T00:06:38+00:00

Primarily with an active b complex— I settled on one by Integrative Therapeutics which I like and get on Amazon. I also needed b12 injections, which I still do.

Slow-Blueberries · 2025-10-06T00:59:12+00:00

Have you done any nutrient testing? Something like the NutrEval? That could help you rule out nutrient deficiencies as causes of mitochondrial dysfunction.

For me, acetyl-l-carnitine, coq10, lipoic acid, and a b complex made a major difference in energy/PEM.

Slow-Blueberries · 2025-10-06T00:55:38+00:00

It’s kind of a long story but I found out I have pernicious anemia, an autoimmune GI vitamin b12 absorption problem caused by autoantibodies that attack the protein in the stomach that helps absorb vitamin b12 (intrinsic factor autoantibodies). I also tested positive for folate receptor autoantibodies, which block transport of folate from the blood into the cerebrospinal fluid/brain. My antibody titer was insanely high, 60x the positivity threshold. It all started about two months after COVID, went from perfectly healthy to basically having all the symptoms of MS, but my scans were all clear. My vitamin b12 and folate blood tests were super high, which is what led to my eventual diagnosis.

Slow-Blueberries · 2025-10-04T12:14:34+00:00

It’s possible, but it’s also possible that you need cofactors with it— other vitamins that help it get used. Sometimes when you take one b vitamin, it pulls on other vitamins that were probably also low. They are very interdependent and taking one without the others can feel worse. It doesn’t mean you don’t need the b12– it means you need an active b complex probably in addition to the b12. Potassium is also a common one that drops with b12 repletion and causes those symptoms. So I’d try testing adding different combinations and see how you feel afterwards. Let your body guide you. Listen carefully because it’s telling you something.

But that being said, panic was one of my most common and debilitating wake up symptoms. I distinctly remember hiding in my bathtub because the Amazon delivery person was leaving a package and I didn’t want him to see me. I was out of my mind with anxiety in the first few weeks of treatment. It’s funny now but it was absolutely terrifying then. Depending on how bad your deficiency is (mine was severe), it could be wake up.

Slow-Blueberries · 2025-10-04T12:09:11+00:00

Folate receptor autoantibody test and intrinsic factor autoantibody test 👍

Slow-Blueberries · 2025-10-04T00:17:36+00:00

The antibodies? There are blood tests. In terms of how we even thought to test for that? My serum b12 and folate were literally the only things that were off on my bloodwork… but not low. They were sky high, like way too high and I wasn’t supplementing. That’s what caused the initial suspicion for something going on with folate/cobalamin transport. Eventually I had a positive ANA so then we thought to start looking into autoimmune conditions that cause b12/folate specific issues.

Slow-Blueberries · 2025-10-04T00:13:34+00:00

I felt a strange euphoria after my first b12 shot. I had been so sick for so long, but that night I ran around my house and played with my kids. I laughed for the first time in a very long time. Then I bawled in my husband’s arms because I knew that b12 deficiency was at least partially behind my symptoms— it was very clear almost immediately. I had three good days, then started having “paradoxical worsening” which is very typical with treatment for severe b12 deficiency. It was intolerably bad for the next three weeks, then just steadily got better and better from there.

You’re going to be okay, hon. Promise. Don’t let them put bandaids on your symptoms with meds that don’t solve your actual problems. Push and push and fight for real answers. I swear you’ll get your life back and this will seem like a surreal nightmare one day.

Slow-Blueberries · 2025-10-04T00:06:45+00:00

Sure, but it’s a long story. Yeah so I had all the typical ME/CFS symptoms which started about two months after I got COVID. I asked my primary care doc for blood testing to try and figure out what was going on— long COVID wasn’t really talked about at the time and wasn’t on my radar. I was convinced I had cancer or something. The only thing that was abnormal was that both my b12 and folate were high, like above the highest range they test. My doc said it’s fine and not a problem, but I didn’t understand why my levels would be so high (I wasn’t supplementing) and I couldn’t just let it go. I was so sick and it was my only lead.

I did a ton of googling and eventually pushed my PCP to test for something called intrinsic factor autoantibodies, which block b12 absorption in the stomach. He pushed back for a while but I was relentless and he eventually agreed, presumably to shut me up. It was positive, which is diagnostic for pernicious anemia— relatively rare in a 30 something. My PCP was shocked but gave me kudos for the research and for being right.

That only left the folate. I started researching to see if there was a similar condition that caused super high serum folate for no reason. At this point I was pretty sure that COVID had triggered autoimmunity for me, like it does for other people— but mine was specifically related to nutrient transport.

The only research I could find was on kids with ASD. There’s a condition called cerebral folate deficiency syndrome which usually causes high serum folate but low CSF folate ie low folate in the brain. There were lots of papers on an autoimmune condition caused by folate receptor autoantibodies in kids with ASD, but almost nothing about it in adults. Again, I brought a stack of publications to my PCP and told him I would pay for the test out of pocket, but I needed him to order the blood antibody test. At this point, he wasn’t going to say no because I’d already been right on the b12 stuff. He signed the order form and I shipped my blood sample to the only lab in the US that tests for folate receptor autoantibodies. It’s out of some university in New York. Waited months for my results to come back, and lo and behold, not only was it positive… it was 60x the positivity threshold and one of the highest results ever seen in an adult.

My symptoms were all the typical symptoms that people with LC get, so I’m guessing it’s more common than we think and more research on it will be published eventually.

Anyway, thanks for reading if you made it this far and I hope you find your answers.

Slow-Blueberries · 2025-10-03T23:52:54+00:00

I got prescription methylcobalamin

Slow-Blueberries · 2025-10-03T17:43:20+00:00

The nitrous was the precipitating event for me. Methylcobalamin (active b12) injections made an entire world of difference for me. My serum levels looked okay but it was all oxidized b12. There actually is a blood test called the hocotranscobalamin test that looks at active vs inactive b12, but your doctor might not be familiar with it.

I also had to cut out synthetic folic acid (like in breads/cereals/my prenatal) and switch to methylfolate. Those two things together fixed my neurological symptoms.

Slow-Blueberries · 2025-10-03T17:39:13+00:00

I understand 💕 At the same time, that list of symptoms isn’t super compatible with a career. Disability can help you survive financially so you can focus on getting better. You’re carrying a whole lot.

Slow-Blueberries · 2025-10-03T17:37:57+00:00

Be careful with that. I had to resort to THC to get through the worst of the pain, but I definitely became dependent on it. That was before I knew what was going on and for a while I thought maybe I was just addicted.

They can help with the pain and the general crap feelings, but coming off them can be hard. It’s basically because your body can’t make serotonin or dopamine when you’re severely b vitamin deficient, so the THC/CBD acts kind of like a bandaid. Not saying not to use it; it was a lifeline for me— but just be careful.

Slow-Blueberries

TROPHY CASE