Brainfog and fatigue until the late afternoon or evening
Posted , 53 users are following.
Hi,
My name is Sem (male, 31 from Belgium), suffering from brainfog and fatigue for a long time (6 years) and hope to get some help on this forum. I will try to keep it short. (sorry for my english)
Symptoms:
- I get up in the morning and after about 1-2 hours I get hit by brainfog (headache, pressure in my head, feeling heavy, problems to concentrate,feeling low...) and fatigue. Mostly these symptoms get better in the late afternoon. During the evening I feel normal most of the time. The difference between morning/afternoon and evening can be very big. When I go to sleep I feel pretty normal. After a good night of sleep (no sleeping problems) I wake up and the same pattern repeats itself. The severity of the symptoms can vary greatly depending on the period. One week I feel like a zombie all the time and can hardly function, the other week I feel tired but a lot better. I have no idea why. (I have tried to link it with food or sleep or stress but there is no clear correlation). The symptoms have a serious negative impact on my life.
In this 6 years I'v tried many things to figure out what is the problem:
- Endless blood tests. They where always fine.
- Urine tests.
- Sleep study. No problems with sleep.
- Cortisol saliva test
- Ultrasound scan of the blatter and the kindeys
- eEg research
- CAT scan of the sinuses
- EMG research (not sure of the translation)
- CEIA bilan (not sure of the translation)
- Endless diets: Low-histamine diet, low-sugar diet, no-gluten diet, no-diary diet,...
- I tried a lot of supplements (for more then 3 months) but there is nothing that gives me a better feeling.
- Psychotherapy
- Allergy test: I am allergic to histamine and mercury
- Food intolerance test: this is the only test where they found a potential cause of the symptoms. According to the test i'm intolerant to almond nuts, diary, gluten, yeast, eggs, and bananas. I avoided these foods for 3 months without any results.
Is there somebody out there with similar symptoms? Is there somebody that can give me advice in my search for a better health? How can I get rid of these headaches and the fatigue?
Especially the difference between morning/daytime and eventing is very striking. It reminds me of adrenal insufficiency (the symptoms are very similar) but i have tested this and they seem to work normal (blood test and saliva test).
I have no idea why this happens to me. I eat healthy (vegetarian, lots of vegetables, no fast food, a lot of whole foods, not a lot of sugars, not a lot of processed foods,...) and I do sports at least twice a week (only during the evening because during daytime it is difficult).
Hope to get some help here! Thanks in advance!
Greetings,
Sem
5 likes, 82 replies
j37069 sem63774
Posted
Din anyone found any solution or partial solution?
sarah53670 j37069
Edited
I have similar symptoms to the original poster, Sem, and have just been diagnosed with OCHOS, orthostatic cerebral hypoperfusion syndrome.
See these papers:
https://pubmed.ncbi.nlm.nih.gov/26909037/
https://pubmed.ncbi.nlm.nih.gov/30308186/
I've been diagnosed with the hypertension/vasoconstriction type and am being treated with calcium channel blockers. I don't feel normal on this medication, but I do feel significantly better.
My case is auto-immune (symptoms go away when I take immunosuppressants and stay in partial remission for a few months afterwards) but the exact auto-immune problem isn't known yet. I feel totally normal while taking prednisolone, but no-one wants to prescribe it.
Have a read about OCHOS and orthostatic intolerance in general, and, if any of it resonates with your experience, it could be worth exploring.
You can ask to see an autonomic specialist and then later a rheumatologist or immunologist if relevant.
sarah13025 sem63774
Edited
This is exactly how I am most of the time, I feel horrendous in the morning, by afternoon early evening I can feel so much better. Its absolutely bizarre the difference from morning to evening. Sometimes I can manage ashore walk in the evening with my dog, but the first half of the day I struggle to even walk from room to room. My brain fog and fatigue level vary massively from then til evening
sarah53670 sem63774
Edited
Sem, I have similar symptoms to you and I just finally got diagnosed (after 20 years!) with orthostatic cerebral hypoperfusion syndrome (OCHOS). Can be diagnosed and treated by an autonomic specialist. In my case, the cause is unknown autoimmune disease (I feel better on, and have partial remission after, taking steroids).
The treatment for OCHOS caused by vasoconstriction is a calcium channel blocker, which will dilate the arteries to the head/brain. This doesn't work for everyone with OCHOS but has helped me. If calcium channel blockers can't be tolerated, ACE inhibitors are another option. This group tends to have hypertension.
Some people with OCHOS don't have vasoconstriction; instead, they tend to have poor venous return, low blood pressure, and possibly hypovolemia. They are treated with the usual volume expansion and similar measures for orthostatic intolerance plus medication to increase blood pressure.
I'm taking amlodipine to start with, but I'm hoping to try nimodipine because it apparently targets cerebral blood flow specifically.
Good luck!
timothy46938 sarah53670
Posted
Hi Sarah,
How are things going currently?
I have same as Sem (just posted),
AND hypertension, one of my meds being amlopodine 5 mg. I'll ask GP about switching to yours.
QUESTION: You say steroids helped...way back when mine CF/brainfog started 7-10 mg. of prednisone was only thing that helped - I took some if there was a "survival task" to do...more recently (before recent CPTSD hyper-arousal, I took 1 mg pred at 6, 9, 11 a.m. (low cortisol awakening response) and that worked.
How much steroid did you take? Did you cycle (weekly taper/vacay to prevent HPA dysfunction). Are you still taking it, and does it still work?
Thanks, Tim
sarah53670 timothy46938
Posted
G'day Tim,
I am going okay. I am having a bit of trouble finding a vasodilator that doesn't have too many side effects, but I am on a low dose that at least lets me get out of bed for the day.
Amlodipine is a calcium channel blocker, so if you think you might have OCHOS, you could ask your doctor if you could try a slightly larger dose, making sure not to push your blood pressure too low, of course.
I did try amlodipine at a higher dose and it worked really well. Unfortunately I am sensitive to the side effect of insomnia and after a week or two I stopped sleeping altogether and had to discontinue it. But I believe that is a fairly uncommon side effect.
I haven't tried nimodipine yet. It is a calcium channel blocker too, but it acts selectively on the brain, so it might work better for me to increase cerebral blood flow But unfortunately I cannot access it under a government subsidy here in Australia. I will pay to try it if nothing else works, and then if it is effective I believe I can petition for compassionate access at a reduced cost.
I took prednisone on four occasions in the last two years for an unrelated reason (really bad allergies). I took it for about a week each time, 25mg tablets, with a half tablet on the first and last days.
Each time after I finished one week of prednisone, I had a partial remission of anything from weeks to months, slowly returning to baseline. As I understand it, the only explanation for this is that my immune system was dampened down and then slowly rebounded.
I believe that if I took it continuously (or x weeks on, x weeks off) it would work. Maybe after some time I could even go onto remission, who knows. However none of my doctors want to prescribe it because of the long-term side effects.
I did experiment with a small dose at one point (had some leftover tablets) but it seemed I needed 25mg to feel better, unfortunately.
In one way, I would love to take it, feel better immediately, and damn the consequences. "Short life but a merry one." In another way, I know the doctors are right because ending up with, for instance, osteoporosis and broken bones could land me in a wheelchair or nursing home.
It's interesting it has helped you too, and at different doses. I tried a lower dose for my fatigue and orthostatic intolerance, but unfortunately it didn't work. (Doctors might have agreed to that.)
On another topic, have you tested yourself or been tested for orthostatic intolerance? They don't let you post links on this site, but if you search on "Bateman Horne orthostatic intolerance" information will come up. There are also some good articles on the Health Rising blog about it.
Cheers,
Sarah
jcooper3 sem63774
Edited
Yesssss!!! Thats how I ended up here. I am dying & I feel like Im doing same tests as you & no one can give me any answers. Im barely getting any work done and hanging on by a thread. All every doctor keeps saying is Im stressed & depressed (which they're saying comes in many forms... low dopamine/serotonin so you dont have to feel sad) and take some depression medicine. Umm how bout Im stressed because of the brain fog (insert facepalm). I dont want to take depression meds & deal with the side effects unless thats the actual cause (like what if theres some other underlying issue)... yet I cant get dopamine/serotonin tests. Im so frustrated idk what to do. Ashwagandha & Rhodiola worked the 1st time but now Im on a 2nd round of brain fog & its not going anywhere this time.
Just read 2 things... I do have TMJ which I guess could be a cause but Ive been battling that for years. The other is Im going to try acupuncture which apparently can help
jayne83502 jcooper3
Posted
Any joy?
Jayne
jayne83502 sem63774
Posted
Hi Sem,
I have the exact same problem as everyone else on this site.
Can anyone please message to see if they have had results with something, preferably natural. I believe it is something to do with the circadium rhythm and being out of sync.
A response from anyone with anything positive would be greatly appreciated.
Kind regards
Jayne
jayne83502 sem63774
Posted
Sem,
can you please get back to me and let me know did you ever figure this out?
I have the exact same and at my wits end.
Kind regards
Jayne
sarah53670 jayne83502
Posted
I'm not the original poster, but I have similar symptoms and a similar pattern, and I found out what was wrong and have started treatment. See my posts earlier in the thread about OCHOS.
toni40889 sem63774
Posted
Hi,
Did you ever find out what was wrong or have any solutions?
Thanks
sarah53670 toni40889
Posted
I'm not the original poster, but I have similar symptoms and a similar pattern, and I found out what was wrong and have started treatment. See my posts earlier in the thread about OCHOS.
mark94714 sem63774
Edited
I have similar symptoms to you and have for years now.
i was diagnosed with POTS (heart rate increases on standing) and many POTS sufferers have these same symptoms, where they improve later in the day.
its thought to be caused by catecholamine levels (including adrenaline and cortisol) being increased.
Also, I'm sensitive to blood sugar levels which sometimes go low (reactive hypoglycemia) and make the symptoms worse, especially in the late morning.
I've had lots of tests, including a tilt table testing and POTS has been the diagnosis.
sharon28435 sem63774
Edited
wow i was googling a moment ago, brain fog during day and feeling well 6pm or at night.
I have the same symptoms at the poster and one other person on here. I was diagnosed with dysautonomia after a few viruses, but I still don’t know why at about 6 o’clock or 7 o’clock every day I just start to feel better but during the day I feel like my brain is swollen. It doesn’t hurt it just feels like it’s mud inside and I can’t concentrate and I just feel heavy and foggy. I’ve had all the same test you have had I’ve gone to numerous numerous doctors.
I just want to feel like I feel between 6 o’clock and 9 o’clock every day. I’ll be back to myself.
sarah53670 sharon28435
Posted
It's probably something auto-immune affecting your ANS or the blood flow to your brain. Daily cycles have been found in auto-immune diseases, so it's not a great leap to make.
You could try getting your cerebral blood flow velocity tested with transcranial Doppler ultrasound. If this could be done during the day and then in the evening it could show a difference in blood flow to the brain.
Unfortunately, the test isn't widely available yet and it's hard to get any testing outside business hours. But the daytime test could show low blood flow at least.
Another option if you are in the US is a new in-ear wearable device. It's not out yet but will show trends in cerebral blood flow. It's made by a company called Stat Health.
You mentioned you were diagnosed with dysautonomia – has that been narrowed down?