Am I going crazy?
December 29, 2019 12:10 AM   Subscribe

YANMD (or my therapist) but I have had debilitating brain fog, targeted headaches, and perception shifts for over a year. It's been a whirlwind of specialists and doctors with nothing to show for it. Help me figure out what to do next.

This wall of text is kind of a desperate attempt to find answers about how to fix my head. I have sought out every medical professional that I can think of or that has been recommended to me and not come up with a lot of answers.

In early Nov. 2018 I began having this brain fog. It felt like something was “off” and that my cognition was somehow being impeded. When this started it was accompanied by an odd paresthesia; pins and needles in my extremities. The only thing I can think of, of what caused this was the use of cannabis. It was sourced from a dispensary and the starin was Black d.o.g. Kush. I had not smoked in about 6 months and the previous time was five years ago.. That night, I had one drag off a joint which a friend finished, had a good high that lasted a few hours and that was it.

The reason I tend to attribute this onset to the use of cannabis is because about 4 months before this even occurred, I had a similar experience. A few days after smoking I was feeling “off” and having the paraesthesia. However it faded away after 2 days and I chalked it up to a “weed hangover”.

The night in question (when I kind of think all this started) I had been drinking. I had consumed about 3 glasses of red wine prior to the smoking and no substance use after the cannabis.

I only include the information about the substance use due to the timeline of events. It was the only anomalous behavior or condition that I am aware of which could have impacted or triggered something to my knowledge. This in conjunction with having a similar “response” to the cannabis in my prior use with it.

Here is what I posted to reddit 6 months ago:

Beginning of symptoms
I'm male, 5' 9", 30 y/o, 156 lbs, and generally healthy. 7 months ago I began experiencing a brain fog that would not go away. Decreased mental clarity, confusion, slight trouble reading (harder to recognize words that are ingrained in my vocabulary).

Also when this started I began experiencing pins and needles in my hands and forearms, especially if touching a wet counter top or a damp towel.
This went on for a few weeks and the brain fog turned into an very perceptible pressure in the left hemisphere of my head accompanied by nightly sharp headaches in the same location as the pressure.

I thought maybe I was just getting older and starting to have migraines or something like that so I gave it a few days before my first medical visit. But the brain fog and pressure was chronic. There was no point where I did not feel it. Literally every waking moment it was there.

History of medical treatments I've sought out since onset
- ER visit in response to left pupil being more dilated than my right, it was in the middle of the night and had a friend recommend going to the ER just in case. They performed a CT scan, nothing showed up.
- I was scheduled to visit a psychiatrist before all this started for this for generic anxiety, nothing serious just general anxiety I'm working on solutions for. He recommends an SSRI, I don't want it but agree to try it. He thinks whatever is going on can be fixed by this SSRI. I take it twice, don't like it, it also makes my ears start ringing (Tinnitus) I guess this is a potential side effect of SSRI meds. I have like 4 immediate family members with tinnitus so I figure its a genetic response to the SSRI and I can habituate. I stop taking the SSRI hoping to end the tinnitus. I withdraw from it having extremely troubled sleep (sleep paralysis) for about 3 nights. Tinnitus remains with me for the duration from this point on.
- Went to my regular doctor and he performed a blood panel and ordered an MRI. Nothing showed up on blood panel.
- Had MRI with and w/o contrast. Nothing showed up.
- Regular doctor refers me to a neurologist. Neurologist wants me to try a new medication called AJOVY (a new medication for migraines) and also orders an EEG test to be done for several days. I don't start the AJOVY until after the EEG. The multi day and overnight EEG test yields nothing.
- I begin taking AJOVY. I'm wary of it because it's a new medication (Released September 2018) and I'm wary of how I'll respond to things after my SSRI experience. I've been taking the AJOVY for 2 months and it has decreased the headache pains that I get at night to almost nothing, however the pressure in my left head remains consent.
- I discover wearing my glasses makes the pressure in the left of my head seem to be more intense so I stop wearing glasses and go visit an optometrist to have a full workup on my eyes to see if it's an optical problem causing head issues. After full eye test and exam of optic nerve the eye doctor says my eyes are good. One weird thing though is that my left eye has more pressure than my right. He measured pressure in two different ways and basically explained that my right eye has a pressure of "18" which is higher than average but not in danger zone. While my right remains at an average of "12" or something. This is all I get from this visit though.
- Somewhere in here I go do some acupuncture, alter my (already healthy) diet a bit, and take dietary supplements. None of this seems to change anything.
- Since this starts I stop drinking. Alcohol seems to make symptoms worse. I discover this after one night of having two drinks and waking up with my ring and little fingers on both hands (completely numb) along with my whole Ulnar nerve cluster it seems. I experimented a bit and alcohol has this weird nerve effect along with just making the fog worse. Not 100% this is connected but it all started around the same time.
- I go in for a check up after 2 months on AJOVY and report my progress to my neurologist. They want more extensive blood work done (it's been about 6 months since onset at this point). They also want me to visit an ENT doctor to rule out inner ear issues
- Visit ENT doctor and he says that my ears are healthy. They test my tinnitus (usually there is hearing loss associated with tinnitus) but he says that my hearing is great and even though my T is loud my ears are good. This kind of confirms for me that the SSRI was the cause for the tinnitus. So nothing from ENT.

Where I'm at now
So the last 6 months have been a roller coaster of visits and studies trying to get to the bottom of this left head pressure thing. I feel like some of my cognition is better (not having as difficult time reading). The brain fog remains and is super annoying but just kinda there. The pressure is the main thing. I feel it in the left of my head and behind my left eye at all times. It feels physiological. I've entertained the idea of this being psychosomatic but it just feels too physical. Another thing is that my left eye always feels swollen (no actual swelling is there or discoloration) but it feels like I have a black eye all the time.

This has all been very, very debilitating. It distracts me from work, leisure, everything. I can still function and am thankful for what I have but I'm really hoping there's an answer and a solution to this problem. One symptom that I forgot to include which also begun in conjunction with all this stuff is muscle spasms. Usually occurring my my biceps or quads but other times in my chest. These are more infrequent but weird when they happen.

Chronic pressure in left of brain accompanied by other various (seeming) nerve symptoms. Attempted just about every test the doctors can think of, all with no answers.

Present day:
- The muscle spasms are gone. I believe that they started happening at the time I began my use of AJOVY and I have not had them since stopping those injections. I took them for about 5 months.
- Neurologist ruled out alcohol related nerve damage (via a nerve test) and helped me figure out that my hands going numb after drinking was actually a result of the position I would sleep in. I had been curling my hands / wrists in when I sleep and have had to make a strong effort to stop this behavior but since then my hands have not been going numb.
- I still drink only on rare occasions and if I do drink I limit it to 1-2 drinks accompanied with food and water
- On recommendation of my ENT I have cut sodium and caffeine intake down to half of what I was doing (if not more) in an effort to keep my ears from ringing more loudly. I still have tinnitus but have mostly habituated. Its loud and annoying but just part of my life now.
- I have not used cannabis since the onset, nor any other substances besides occasional alcohol and about 60mg. Of caffeine a day.
- I’ve gone on and off with exercise routines but have maintained my weight of 155-165 lbs.
- I visited a neuro-opthamologist at the recommendation of a reddit user. It was a pain to find one and get the appointment but I made it happen. They ruled out any eye-related causes and told me my eyes seem healthy.
- I have an updated eye prescription but still don’t wear glasses unless I have to as wearing glasses makes the fog more apparent.
- Pressure in head is no longer as consistent but I still feel different and the pressure does spike daily and I still get sharp left sided headaches.
- New issue is that I am having trouble seeing things in “smooth motion”. I believe this is related to my anxiety and is more psychosomatic but basically I watched half of a movie with the “smooth motion”, “true motion” setting on and now I keep seeing it IRL. Like I feel like watching a movie like that trained my brain to focus on movement in a weird way but it is very discomforting. I’m not sure if this is related to my other “head stuff” but it makes me feel like I am crazy and that I am more disconnected from reality.

Sometimes all of this makes me wonder if I have some sort of DP/DR or Schizoaffective disorder.

I plan on starting therapy early this coming year as well as getting an updated MRI to compare for any changes. Does anyone have any tips on how to stop this? Anything to reassure me that i’m not just slowly going crazy? Has this happened to anyone else?
posted by anonymous to Health & Fitness (19 answers total) 3 users marked this as a favorite
One possibility: look into food intolerances, in particular biogenic amines and salicylates that naturally occur in lots of foods. Food-intolerance triggered "brain fog" is very real, and devastating. Headaches and muscular problems are also known symptoms. Ringing in the ears is a known symptom of salicylate intolerance. The sensation of "pressure" in your head and eyes and vision problems are not medically recognised as far as I know but there are lots of anecdotal reports out there (and I've personally experienced them as apparent symptoms of salicylate intolerance).

Food intolerances can start or become much worse in middle age for no apparent reason. Alcohol and cannabis can both be involved in food intolerances just as things that you ingest, separately from their intoxicating effects - alcohol is a histamine liberator and cannabis is high in salicylates.

It may not be the answer in your case but it's worth looking into as a possibility.
posted by riddley at 1:15 AM on December 29, 2019 [8 favorites]

Yeah, get allergy tested. Allergies can start at any age, and can cause all kinds of bizarre things. My food allergies cause major brain fog. Dairy makes me lose the ability to pronounce two-syllable words.
posted by MexicanYenta at 1:34 AM on December 29, 2019 [2 favorites]

Rheumatologists are good problem solvers as autoimmune diseases throw out all manner of symptoms. Might be worth seeing one for a overall review?
posted by kitten magic at 2:02 AM on December 29, 2019 [6 favorites]

- I was scheduled to visit a psychiatrist before all this started for this for generic anxiety, nothing serious just general anxiety I'm working on solutions for.

I don’t think you should ignore the timing here. Your anxiety being provoked to the level of seeking help likely means that your body knew something was wrong a while before the obvious symptoms appeared. On the flip side, high anxiety levels bring their own raft of physical symptoms and can make it hard to sort out what is what.

I think you would benefit a lot by starting therapy immediately, both because lowering anxiety levels is a good thing and because it will help you clarify which symptoms belong to what.
posted by Tell Me No Lies at 3:16 AM on December 29, 2019 [10 favorites]

Has anyone checked your thyroid? Autoimmune diseases cause weird symptoms all over the body. Make sure you get the full thyroid work up from a rheumatologist and not just the base level check from your GP.
posted by edbles at 5:45 AM on December 29, 2019 [2 favorites]

This has nothing whatsoever to do with taking one hit off a joint months ago.

That's what I thought, too, until I got to this:
I watched half of a movie with the “smooth motion”, “true motion” setting on and now I keep seeing it IRL. Like I feel like watching a movie like that trained my brain to focus on movement in a weird way but it is very discomforting. I’m not sure if this is related to my other “head stuff” but it makes me feel like I am crazy and that I am more disconnected from reality.

"Sourced from a dispensary" makes it sound like you got this joint directly from the surgeon general, but unless you did the sourcing and you know the provenance of this Black d.o.g. Kush and rolled the joint yourself and so on and so on, it is possible that what you got wasn't just pot. That part about the way you perceive motion sounds familiar, and it sounds an awful lot like you got dosed. If that's what happened, it's for sure irritating, but it does wear off.
posted by Don Pepino at 7:34 AM on December 29, 2019 [2 favorites]

Did you have any GI tract events (prolonged diarrhea, food poisoning, courses of anti-biotics) prior to this starting? If your gut microbiome turned over at that time, you could now be reacting to new and different food sensitivities that you didn't have before. A lot of what you describe sounds like inflammatory responses and if you're now sensitive to something that you weren't before, that would explain why it's happening now.

Given that you've tried almost everything except an allergic / inflammatory cause, I suggest beginning the months long process of an rotating ingredient elimination diet.
posted by seanmpuckett at 8:18 AM on December 29, 2019 [1 favorite]

Yes, I was also wondering if you have had your thyroid checked, and also if you have had your Vitamin B12 level checked.
posted by gudrun at 8:52 AM on December 29, 2019 [6 favorites]

The only tidbit I can offer is that the "smooth motion" thing might not be related to the other issues but just something that coincidentally happened during the same time period. There was an interesting case several years ago of a person who had never had normal depth perception going to a 3-D movie and it somehow triggering that part of his brain to start working (permanently): BBC coverage.
posted by heatherlogan at 9:52 AM on December 29, 2019 [2 favorites]

You don’t mention if you take any other medications, but statins also cause brain fog and lots of other side effects that can appear after taking them for some time.
posted by gryphonlover at 10:07 AM on December 29, 2019

Issues with your blood potassium level? Too low is hypokalemia, resulting in brain fog, headaches, and muscle cramps; too low or too high (hyperkalemia) can lead to a pins & needles sensation (paresthesia). Causes include diet, aldosteronism (with its abnormal electrolyte levels), or _____ (see initial Cleveland Clinic links). You mention you were more of a drinker before this started, and chronic alcohol use could've kicked off an electrolyte imbalance in general.
posted by Iris Gambol at 11:01 AM on December 29, 2019 [1 favorite]

All of your symptoms, especially including the hard-to-define visual perception changes, mild dissociation, sensation of malaise and brain not working right, and numb fingers, can be part of a migraine aura. it is not unusual for the aura to be more distressing and debilitating than the headache itself. and since the migraine medication did do something for your headache pain, I think it is possible that you've already found and gone past the right answer.

Although I do get migraines myself, I have never taken prescription medication for them, so I don't know what you should expect from a specialist. but I do know that with OTC meds, it is easier (for me) to treat pain (or by pre-treating, eliminate pain) than to alter or arrest an aura. So the fact that the medication didn't change those symptoms doesn't necessarily indicate that it is or isn't migraine-related. & I have heard of people with migraine headaches that lasted years, continuously.

This is not to discount the suggestion of a sinus infection or some unusual vitamin deficiency, as both are also possible, and anything that can be tested for and ruled out should be, for your peace of mind. and obviously I am not a doctor and could be wrong even if I was.
posted by queenofbithynia at 11:20 AM on December 29, 2019

I think I'm the one who suggested the neuro opthamologist. I had most of the same issues including the motuon camera thing going on. Its not at ALL like migriane aura, which is not constant and is quite recognisable to anyone who's had migraines, like me. Finally got a diagnosis of craniocervical instability and with treatment most of my symptoms have resolved. Mine was most likely caused by an accident a year prior damaging ligaments in my neck. I need to get my vision checked again to see if the tracking has resolved but I think it has. So has the visual snow, brain fog etc.
posted by fshgrl at 11:57 AM on December 29, 2019 [1 favorite]

I cannot imagine any hallucinogen that would provide persistent psychedelic illusions and hallucinations for months
But you can imagine a sinus infection that would. "Flashbacks" last and last and last. It's not like in the movies where you're wandering through life and suddenly the world is acreep with dayglow spiders, it's more like you're on the way to the bank some random Tuesday and you glance at some trees and they appear subtly fractilized and you're like "again with this shit godDAMN it!" And then eventually it quits happening.
posted by Don Pepino at 12:13 PM on December 29, 2019

Damn. Sounds awful. Okay, going to the dentist next month.
posted by Don Pepino at 8:24 AM on December 30, 2019

I thought 'anxiety' before I even saw the bit about the psychiatrist. You sound exactly like me when I had bad generalised anxiety disorder, seriously. I'm much better on an SSRI (escitalopram). You really do need to take it for a few weeks to feel the effects and I don't think it was until I was on it for 6 months before everything evened out for me.
posted by thereader at 12:17 AM on December 31, 2019 [1 favorite]

I also agree about the anxiety. I ended up in hospital emergency with suspected stroke recently. Had an MRI and a host of other tests, and they all turned up nothing. I was released with the diagnosis of "anxiety creating very real physical ailments". This from the medical establishment. They know what the mind is capable of producing in the body.

Do you have a history of any trauma? It sounds to me like the pre-existing anxiety and the cannabis triggered a massive healing crisis in your body. I cannot more strongly recommend The Body Keeps the Score by Bessel van de Kolk. The guy is the grandfather of PTSD and is, in my opinion, a genius. This book is changing my life, and so many others. I can't tell you how many people have recommended it to me recently, and now I'm going around doing the same.

My best wishes to you in finding the right solution to the harrowing things you're going through
posted by Zaire at 10:17 PM on January 1, 2020 [1 favorite]

I have chronic migraine auras that cause all kinds of weird symptoms for me. The migraine and the aura may occur together but can also be entirely separate. I went to a neurologist, who STRONGLY insisted that I go on a high dose of magnesium (800mg) daily. I take it in the morning and at night. I was highly skeptical. I am 90% cured of my problems. It has made a measurable, remarkable difference in my quality of life. I still get the odd aura, but if I take it consistently they are a LOT less. I also get significantly less headaches.

The effects of magnesium on migraine aura are well-documented and very well-researched. Here is a link with more information. Talk to your doctor about it, but you can also buy it over the counter. Give it a couple weeks to work. It did not work for me at all at first.

Also, SSRIs can take up to six weeks to kick in, and they often make symptoms worse before they get better. If you are going to try and treat the anxiety with medication, you need to give it a LOT more time.

Good luck!
posted by Amy93 at 1:53 PM on January 2, 2020

Have you looked into tick borne illnesses like lyme disease? Headaches and weird neurological symptoms can start days to months after being bitten, and not everyone gets a rash.
posted by Blue Genie at 3:08 PM on January 4, 2020

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