Brainfog and fatigue until the late afternoon or evening
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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
stef37193 sem63774
Edited
I have the exact same symptoms.Are you sure it's not CFS?There aren't any tests to confirm or reject it so I doubt your doctors can say anything with certainty.For me PEM symptoms had at least 24 hours delay from anaerobic exercise so I wasn't aware of it for years because I didn't connect the dots.But I think PEM can hit much faster from aerobic exercise.
Anyway your case looks like brain inflammation.There are a few things to try but what helped me was pramipexole, it was the only thing out of a ton of trials that worked and worked pretty well.It has a difficult titration up but once you get to the therapeutic dose and stay there about a week you will see the benefits.You start at 0.5mg and increase 0.5mg every week.You take one dosage at night, it will make you sleepy.As you are getting used to it you will get the opposite effect, it will make you more tired.You get used to a dosage when you stay at it for a week or more.As you go up you can make a stop at 1.5mg, which is at the lower range of the therapeutic dosage range, wait 7 days to start seeing the benefit and if it's not enough set the next goal to 2mg and do the same (wait 7+ days when you get there to gauge the 2mg dosage).
The average working dosage according to Fawcett's study is 2.5mg (-+1mg).Don't let the diagnosis of the patients in the study let you down.It wasn't typical depression to begin with, those patients had an average of 6 failed drugs.Treatment resistant depression could be anything, perhaps something neurological that causes depression as a side effect but it isn't the main issue.Specifically, I suspect that almost all these patients had brain inflammation which caused the depression and the failure of the antidepressants, that's why pramipexole worked for 76% of them, when everything else failed.Pramipexole is protective and antiinflammantory in the brain.I hope you see this because I really think it will help you.I know how big of a journey this is, I was lucky to find this, I could have easily tried 10-20 more supplements/drugs and still be at square 1.
Obviously you should ask a doctor about it.Mine was against it and that was the reason I quit it and tried his suggestion (wellbutrin) which has failed.I will negotiate getting back on pramipexole because I really thing he exaggerated the issues of this drug.In any case, if you decide to quit it you must be very careful to do it extremelly slowly, much more than titration up.You should reduce 0.25mg every 2 weeks.Good luck.
Oh and yeah, I saw the comment above and I remembered that I am also using LDN.It does help with brain inflammation but very little in my case.In fact, when I was on both I attributed that feeling that something took care of that inflammation/fog to LDN, because I didn't know then that pramipexole has such properties.When I quit pramipexole and continued LDN the symptoms came back and I realized that pramipexole must have antiinflammantory effects in the brain, so I looked it up and it looks like it has, and quite much so.
LDN is pretty harmless, you can add it anyway, just avoid opiods at least around the dosing time.
I'd say that LDN gave at most 20% of the inflammation reduction, pramipexole gave at least 80%.
kate92707 stef37193
Posted
hi, same struggles here. 4 years already. recently started with LDN therapy but the symptoms still appear. which doctor would prescribe pramiprexole?
robbie97655 sem63774
Edited
I fainted 3 years ago and hit the back of my head badly and have experienced these symptoms chronically since then. Mainly dizziness (especially in supermarkets or when i turn my head), fatigue and difficulty concentrating all while having dull pain in my neck.
Ive tried every treatment, often with multiple practitioners and was getting no where. Then my 4th physio was a specialist in post-concussion syndrome and after a few massages and some excercises to strengthen my neck muscles, I feel a lot better! I believe the problem for me occurs because of injury to the sub-occipital region.
I hope this helps someone, as I was so lost for a long time and frustrated that no doctors knew what to do.
martin43118 sem63774
Edited
Hello there. I have similar condition already for 10 years with better and worse periods.
Usually I wake up and feel good and then after minutes up to 1 or 2 hours I start to feel brainfog, fatigue, can't focus, pressure in head, weird vision. This is going through day and then in late afternoon or in evening I start to feel normal and healthy again.
Since doctors after many tests found nothing wrong with me, I was said it is psychological issue many years ago and I spent many years on antidepressants. Recently in two years out of antidepressants and I have no depression and anxiety is also very low levels. But my condition is same. I really don't think it is mental disorder since I tried so many drugs and nothing seemed to help.
I can't find connection. I'm trying elimination diets since I also have problems with bowel movement and have pretty often diarrhea.
Also in trying to find some connection with light. Eventually I exchange all my bulbs home to classics ones. I'm trying to to find any connection with LED screens since I also by light sensitivity and swelling eye lid. But to be honest I don't know if is this also related to original issue or is it another one caused by spend too much time to looking to PC.
I'm trying to live as normal life as I can buy its hard to be honest.
If anyone find what is wrong with us. Please let me know. It has really affected my life a lot in negative way and doctors gave up long time ago.
sarah53670 martin43118
Edited
Hello Martin,
Has anyone checked for POTS or orthostatic intolerance?
https://www.potsuk.org/gp_guide
Also, sinus problems or migraine?
I feel fatigued, weak and have trouble concentrating in the morning too. Then it wears off and I feel normal in the evening.
It's really hard waiting around most of the day to feel better ... I live in the country so there's not much to do at 10pm here!
Regards,
Sarah
CaptainACARS martin43118
Posted
Good evening, after reading your post, your symptoms are identical to mine except for the
diarrhea. Even your description of issues with light match me. I am wondering if you have made any progress with your diagnosis? I have been dealing with this 5 months, the Doctors are just passing me around, they never have answers but they sure do get the bill out on time. My Primary Care Doctor wants to do a psychological evaluation and I think put me on anti-depressents just like they did to you. I know my problem is real, but if your Doctor does not believe you, your hopes of being properly diagnosed are slim. My wife and I are considering trying to involve the Cleveland Clinic, since several people seem to have had good luck with them. Do you have any advice or comments that might steer me in the right direction? Any help at all would be appreciated. Thanks so much in advance!
sarah53670 CaptainACARS
Posted
Try seeing an autonomic specialist.
Tennyx sem63774
Edited
I wanted to post an update on my situation. Before I said I was diagnosed with Neurocardiogenic Syncope from a tilt table test. This is a dysautonomic disorder. I eventually went to the dysutonomia clinic at Cleveland Clinic and they diagnosed me with POTS instead. I strongly suggest anyone who stumbled upon this thread and cannot find answers to do a Tilt Table Test. This is what sent me down the road to recovery.
I have found working out is my quasi-cure. If I stick to a regiment of biking 3-4 times a week (30 minutes - 1 hour) and trying to fit in a couple weight routines every week or every other week, I feel a lot better. Not 100% all the time, but definitely liveable and manageable. This doesn't work for everyone, but there are a plethora of suggested treatments for those with dysautonomia - in particular:
I crash on days where my salt is too low - 3,000mg seems to be the good number for me - combined with exercise.
https://my.clevelandclinic.org/health/articles/6004-dysautonomia
Good luck all. Get that tilt table. It sucks but it's worth it to find your energy again.
erik79913 sem63774
Posted
Hi, I discovered this forum as I have had similar problems with brain fog/fatigue/chronic sleepiness.
If you have had CT/MRI procedures without any conclusive answer, this might be worth looking into,
especially as you are histamine intolerant
https://www.nhs.uk/conditions/mastocytosis/
It may help
Good luck
Rose.marie sem63774
Posted
Hi Sem,
What you described above is my situation almost exactly. Like you, I find it very strange that the brainfog/fatigue begin around the same time every morning and end around the same time every evening. I feel like this is an important clue, but I can't crack the code (and neither can the doctors I've seen.)
A few things to add to the conversation:
For me, when I exercise lightly (such as a brisk walk or gardening) my brain fog is improved. However, when I exercise more, like my three mile runs, I find myself shaky, fogged and sluggish enough that I often have to sit down for half an hour before I have the fine motor skills to shower. As I run, the road seems to buckle and wave in front of me, with lots of fog and blurry vision. Anyone else have exercise issues?
Also, I have discovered that I have a strong sensitivity to gluten. I tried GF for one of the many diets I was assigned, and then every time I tried to eat it again, I have strong depressive symptoms for about 48 hours afterwards. Every time. I don't know how or if it relates to the other issues, but I thought I'd throw it out there since you mentioned that you tested sensitive to gluten.
Lastly, a few times I've been rushed to the ER for sudden nausea, Kussmaul breathing, strong shaking and difficulty talking. I'd go in by wheelchair too weak to walk, would be given fluids and walk at normal again after an hour or so. One time they tested Ketones in my urine, and diagnosed Ketoacidosis, but I don't have diabetes and wasn't fasting. Anyone on this thread have a similar experience?
pat69697 sem63774
Edited
iI have also noticed i start to feel reasonable towards evening and thats when i do stuff. i wake up every morning feeling like death so now if i need to go to the supermarket I go in the evening. Ive had CFS for 10 years now and I cant find what triggers the symptoms or what makes the improve. its very strange.
sarah53670 sem63774
Posted
Hello again Sem,
I just wanted to make another suggestion - has anyone looked at your blood volume? It would need to be measured when you have symptoms (daytime) and when you feel better (evening).
I have been struggling with this aspect. Clinics and medical test centres tend to be open business hours, and this can't accommodate differential testing for symptoms that change from morning to night.
Regards,
Sarah
dawn9692 sem63774
Posted
i have the same thing for 13 years now. It is awful. i understand everything you are saying. Doctors are useless. i've given up many times on them. one thing i am getting ready to try is NAD iv infusions. i just listened to a podcast and the guy sounded similar to us. He said it healed him and changed his life. i'm not sure if i can share the podcast here or not.
please message me if you don't get the link.
d46502 dawn9692
Posted
Any luck with the NAD IV?
sarah53670 sem63774
Posted
Hello Sem,
I have another suggestion for you – abdominal blood pooling, aka splanchnic hyperemia. Blood pooling in the abdomen can cause fatigue and weakness because not enough blood is getting to your brain. It can be related to upright posture, to blood being diverted to your digestive system after you eat, or to both. (Also to some serious liver problems and trauma injuries, but I won't list those here because doctors would already know if you had these.)
You can also have blood pooling in the legs.
Hypovolemia (low blood volume) could be involved. (That is chronic "mild" hypovolemia, not the acute kind of blood loss/shock.)
Blood pooling can be treated with compression garments, of course with your doctor's supervision.
Some people also find salt & fluid loading helps (again under the care of your doctor). People with very serious symptoms (frequent fainting and severe debility) may be prescribed IV fluids. These two interventions help by raising the blood volume.
I have discovered that I have abdominal pooling and my symptoms are improved with abdominal compression (not 100% but definitely improved). I don't have any signs of pooling in my legs, and as you can't "see" blood pooling in your abdomen, I only discovered this by chance when working my way through a list of interventions for orthostatic intolerance (OI).
I still don't know why I feel better in the evening or whether I have hypovolemia (waiting to see dysautonomia/OI specialist) but I'm very happy to somewhat relieve the daytime symptoms.
Something worth investigating with your doctor.
Cheers,
Sarah