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Constant headaches, nausea, dizziness, and brain fog
For the past 4 or 5 years I have been experiencing headaches accompanied by a variety of other symptoms and there is no rhyme or reason as to why.
Starting around 2021 (I was around 25 years old) I started to get daily headaches on the left side of my head (primarily temple), and it would be accompanied by constant naseua as well as constant dizziness and lightheadedness. This was especially strange since I had never had a headache in my life until then. It got to the point where it was heavily impacting my day to day well being, so I saw multiple neurologist and had multiple MRIs done. Ultimately the MRIs proved to be clear. The indicated I had an arachnoid cyst on the left side of my brain, but I was told that wouldn’t impact anything. One of my neurologist recommended on go on topiramate for a period of time, which I did, but it didn’t seem like that made things better. It just gave me some odd side effects.
I was eventually able to get an appointment with a neurologist at Mayo back in 2023 where’d I explained all the issues I had been having, and he ultimately thought it was most likely being caused by an infection and he thought it would go away. He didn’t think I should be medicating for any underlying issues, so I eventually weened off the prescriptions. Things got tolerable enough after a while (symptoms still lingered, just not as severe), so I just decided to suck it up and continue on.
Fast forward to this January, and there was a morning where I stood up and I was seeing stars everywhere (different than a head rush), and this was the first time I’d ever experienced it. It lingered for an hour or two and went away, but then over the next couple of weeks I started showing other really strange symptoms. I started to feel tingling in my limbs on both sides, and I started to feel like the left side of my face and jaw were sagging (visually they weren’t). I saw doctors about this and had another MRI done which came back clear, and I had an EMG done which also proved to be fine, but that seemed to be the catalyst for all my old symptoms starting back up.
The last couple of months have been really difficult as I have had nausea constantly, every single day, I have been dizzy constantly every single day, I have had headaches which have started to get really severe (primarily on the left side still, but now radiating further than just the temple), and I just constantly feel out of it. The best way I can describe it is if you were to wake up with a really bad hangover and cannot focus on anything or hold a conversation. I have since been back to the neurologist where they are still treating these as migraines, but I can’t help to think it is different from that. I will occasionally see black and white floaters, and I also have tinitus in both ears (I have since I was a kid). There doesn’t seem to be anything in particular that is triggering anything (light, noise, etc), and there is no pattern as to when they happen. I have been on Emgality the past 3 months and have noticed no difference, and I take zofran for nausea which also doesn’t seem to work great. I recently reached back out to my neurologist because things have gotten especially bad, and he put me on a 10 day taper dose of dexamethasone (starting at 10g daily and decreasing by 1 per day). I am 3 days into that and have not noticed anything different either. He also prescribed me rizatriptan which I have yet to take.
Ultimately I am trying to figure out what the heck is wrong with me and what I can do to stop living in constant pain and not being able to function how I know I can. The headaches are frustrating, but I think the other symptoms are what are bothering me the most. It seems like everyone is attributing this to migranes, but clearly none of the migrane treatmants have made any difference, so I’m wondering if it could be something else. Might be worth noting that these symptoms appeared with about a year of me having COVID and also within the same amount of time of receiving the COVID vaccine. I appreciate any suggestions or any feedback from anyone who might be going through something similar.
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Hi,
I guess not all symptoms’ conditions will be related to one another and not all may be neurological related. It may seem to see at first sight. Sometimes, an experienced general practitioner who had seen hundreds or thousands of such cases may actually be a better first choice. Well, at least that’s what I feel. Hope you get better soon.
Cheers,
Louis
Have you ruled out cleaning agents, or something else, like flooring adhesives, that you might be unknowingly inhaling? In other words, could it be environmental instead of physical?
Regards,
Sagan
I am so sorry you're experiencing such awful headaches and without any clear answers.
Have you ever been tested for gluten sensitivity and Celiac Disease? My symptoms of Celiac disease were neurological and took twelve years to diagnose (it cause episodes of paralysis in my legs and neuropathy in my hands and feet, among other things). Celiac Disease can cause the attack of any organ system and may not cause any digestive issues, or any symptoms at all. Gluten sensitivity without Celiac can also cause an array of problems. Some people experience joint issues, muscles issues, issues with their teeth, and/ or terrible migraines. Roughly 1/2-1/3 of people with Celiac have not been diagnosed. It is thought that sometimes viral infections can cause the onset of symptoms (I started experiencing paralysis shortly after suffering a bad bout of infectious mononucleosis). Perhaps it could be worth looking into?
To be accurately tested for gluten sensitivity and Celiac you need to remain on a gluten diet for three months (eat the equivalent of a slice of bread every day) before testing. Below is the serology to request-- many doctors will only test the tTG but an "off" result from any of them could warrant an endoscopy and biopsy of the small intestine to look for possible damage to the villi. A good GI doctor will look for all of these.
Celiac Serology:
1. IgA antibody
2. Antigliadin Antibody IgG
3. Antigliadin Antibody IgA
4. Tissue Transglutaminase Antibody
5. Immunoglobulin A level
I hope that you find relief from your awful symptoms. It is so difficult to be in a place of waiting for answers, especially when you aren't feeling well. Keep pushing, and get second opinions when you feel you aren't being understood. I hope this helps!
i had an mri of the brain and needed help to stand up, and have had dizziness, and brain fog ever sense. i can't complain to the hospital or doctor, they are the ones that did it to me, i suspect they used too powerful xray on me. at 77 i'm not much use to the veteran administration.
@rob13579
MRIs don’t use X-rays, but did they inject contrast in you?
x-rays are the common term for parts of the spectrum from radio waves to gamma rays. bombarding the brain with magnetic waves can easily cause harm if the power hasn't been measured each day by a technician. injecting contrast has nothing to do with it.
@rob13579
There could have been a reaction to the contrast which was the purpose of my question.
that was my first comment, and didn't know i was replying to a neurologist/social worker. reading your replies when you're not diagnosing us, you're asking us to confide in you. after looking into it, i'm unable to find where you received your medical degree, or your social worker certificate.