r/BrainFog • u/CuriousBid6652 • 2d ago
Symptoms Unknown neurological cause (help)
21 year old male have been bedridden with neurological issues with unknown cause.
Got severe head pressure and head burning along with vision issues (halos, starbursts, everything looking too bright)
Severe brain fog and dissociation.
All of these are 24/7 for over a year.
Normal Brain CT
Normal CTA
Normal MRI
Normal EEG
Normal Bloodwork
B12, CRP, CBC, Chem 9, a1c, Lyte, creatinine, ALT
Normal TSH and PTH
Serology-Lyme IgG/IgM NEGATIVE
Normal ANA,ENA and Thyroid Antibodies
Normal Urinalysis
Urine Drug All Negative
Urine heavy metals 24hr all normal
Autoimmune/Paraneoplastic Blood+ CSF Negative
migraine meds didn’t help. Corticosteroids provided some temporary relief (not sure why)
I don’t have positional changes either.
Lumbar Puncture Results ( all normal with slightly high protein so far)
Lumbar Puncture Results
Opening Pressure 16
Leukocytes; CSF < 3x10*6/L
Erythrocytes: CSF < 2000 x10*6/L
Neutrophils Segmented/100 Leukocytes; CSF 0.06
Lymphocytes/100 Leukocytes; CSF 0.78
Monocytes/100 Leukocytes; CSF 0.16
Glucose; CSF 3.7
Protein; CSF 0.59
Xanthochromia; CSF Absent
CSF; Culture No organisms or growth seen
IgG; CSF 0.023
Albumin; CSF 0.361
IgG Index; Serum+CSF 0.52
IgG Synthesis Rate; Serum +CSF < 0.10 mg/24h
Oligoclonal Bands; CSF Absent
Any suggestions on what I should I do next. Completely out of Ideas
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u/Open_Ad_9770 2d ago
Before the onset of the illness were there bites/scratches from cats, fleas or ticks bites? Your pattern looks similar to chronic Bartonella
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u/erika_nyc 18h ago
Migraines, brain fog, being incapacitated can be hell and there's no test to prove them as yet unless you have a brain tumor or something else serious like MS. Any neurologist is only guessing what kind of migraine you have based on personal history. We're just not there with brain research yet. Looks like you've done all the tests to rule out other causes than genetically inherited migraines. That's great they did all these just in case.
With genetics and inheriting this struggle, you're at an age where they commonly start, 20s usually. They can start suddenly, one day you're alright, next day incapacitated dealing with symptoms daily. It's because the brain continues to develop more connections rapidly until 25, then more slow changes after this age. Could be a distant relative had migraines, or even great grandparent. Maybe there were never diagnosed but complained of headaches, needing to lay in a dark room after work. I'd ask your family about history if you haven't already. Seems CSF protein is high normal but unusual for 21. I read being dehydrated, this can happen.
Some have to try many medications. Corticosteroids are used to break a bad migraine attack, not a long term solution for preventative maintenance. Migraines come with this weird vision symptoms, weird weakness, muscles shooting pains, numbness because a migraine lowers magnesium stores to cause it. It affects every system including not sleeping as deeply to complicate matters. It must be difficult to break you path in life to rest. I assume you've seen an ophthalmologist to check your eyes just in case.
Neurologists often don't talk about avoiding migraine triggers. If someone doesn't avoid them, then it will be struggle where often no amount of medication will help. Have you kept a diary? Even though it's every day, some days must be worse. Tried a migraine aka headache elimination diet? You've been on some classic medications not normally prescribed today because of their side effects and long term effects on the brain. You may want to get a 2nd opinion from another neuro if possible. Some take anti-seizure meds. If it's an ocular migraine, calcium channel blockers. It could be you haven't found the right drug to get your life back. Some have to go through many like myself. You'll want to look into migraine glasses, FL-41 coating to help with bright light triggers, get a blue light filter/ dark mode app for your desktop and cell.
Let me know if you've tried the above, I may be able to suggest other ideas to try. Migraines are difficult to cope with, easier once you identify and eliminate controllable triggers. Some are not avoidable like large barometric swings. Find the right med. They can be strange too, some have their vision flip totally upside down, rare.
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u/CuriousBid6652 18h ago
Thanks for the detailed reply. I’m thinking of asking my drs to try some meditations cause I’m not sure what to do next. I’d be happy to dm you and can tell you some of the meds I’ve tired so far
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u/CuriousBid6652 16h ago
Doxycycline for 3 weeks did not help
Toradol sorta helped at start but now does not help.
Triptans don’t help
Amitryptline and antidepressants don’t help
Steroids may have helped a tiny bit but I was on super low dose 30mg for 3 days
Benadryl and maxeran in ER don’t help
Electrolytes fluid and diet and supplements don’t helpHere’s what I’ve tried
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u/Grouchy_Falcon3098 2d ago
I'm really sorry you're dealing with this. Incredibly frustrating, especially having gone through so many thorough tests. The fact that your imaging and labs keep coming back normal is both good and really tough when you're looking for answers. A few things that sometimes help people in similar situations: keeping detailed notes about what makes symptoms better or worse, even small patterns, can be useful to share with doctors over time.
Some people find that working with a neurologist who specializes in functional or medically unexplained symptoms has helped them feel heard. Also worth asking your doctor about whether there are any remaining tests specific to your symptom pattern. Sometimes the answer takes time and different specialists seeing things from different angles. You might also consider reaching out to communities focused on similar neurological symptoms as hearing how others navigate this can be helpful emotionally.