Aa
Undiagnosed illness ruining my life
35M, 5'10'', 188lbs, white, 10mg citalopram daily for anxiety, do not drink or smoke, symptoms began in February 2023
Hello, I am a healthy, fit 35 year old male, that before the year of 2023 was an avid gym go-er, ate healthy, and lived generally a healthy lifestyle. My occupation is EEG Technologist which I have been doing for almost 8 years. This job requires me to be in awkward positions for long periods of time and/or sitting for very long periods of time (sometimes only getting up a handful of times for some quick stretches within a 12 hour shift). This occupation has led me to have chronic back and neck pain, but not to any point where it limited anything in my life.
In 01/2023, I banged my head in my garage, I did not think I had even hit my head hard at all, but I started to have symptoms of a concussion and ended up in the ER where I was diagnosed with a concussion based off of symptoms I described only. CT scan was normal. I recovered rather quickly from the concussion and was back to myself working out feeling good.
In 02/2023, still dealing with my everyday back and neck pain, I decided to go see a chiropractor in my town. I had seen many chiropractors in the past for adjustments and it was always quick and painless, never experienced any bad side effects. At this chiropractic visit however, he did a full body adjustment including cervical manipulation, and he also did "dry needle therapy" where he put acupuncture-like needles in muscles and then attached electro stim to the needles. This burned so bad. It was very painful. He reassured me its normal to hurt but after about 5 min I had him remove everything. Immediately following the visit, my head didn't feel right, I was lightheaded and just a bit confused.
That night I experienced insomnia for the first time in my life. I slept maybe 1 hour. It felt like my brain was burning. The insomnia continued everyday for an entire month following the chiropractic visit. In addition, my pain in my neck and back became excruciating. It felt like I had been in a car accident. I went to the ER on multiple occasions thinking that the chiropractor must have caused damage that I needed to seek medical attention immediately for. The ER did an MRI brain MRA brain and MRI cervical and MRA neck ALL without contrast. All imaging was normal.
My symptoms continued to get worse: sleep was disrupted all night every night, pressure in head/eyes 24/7, When I would wake up from my short bouts of sleep I would have very high BP 180/112 (during the day I am 120/80), sometimes shaking in sleep, pain in back the worst but began feeling pain in hips, knees, calf, back pain so bad I would feel pain in my stomach, extreme fatigue 24/7. Also pain in back of my head.
I started to see a PCP who did blood work, checked vitamin levels, check testosterone levels, checked for pheochromocytoma, checked thyroid, inflammatory markers, lyme disease. Everything came back normal. The only thing that was abnormal was my lyme test was reactive for 41 KD (IGG) band. But the doctor said that I would need 2 strains in addition to this one being reactive for it to be a positive lyme test, so he said it is negative. In addition to my PCP, I saw a neurologist who did a 5 min assessment of "pull my hands push my hands" and told me he feels neuro is not the best team to treat my symptoms and dismissed me. I followed up with my cardiologist because I was experiencing an increase in chest pain and palpatations. I had a long bout of A-fib in 2021 which is when I began seeing this cardiologist, but all my tests were normal and he felt no medication was necessary at this time. He said my heart is in good condition and even though I was waking up with high BP in the middle of the night he did not want to start me on BP meds. I just did an in lab sleep study which I am waiting on the results (will receive next week).
I am going on 7 months of feeling like I am going to die any day now. I can't do much in life now. I wake up throughout the night with pressure/lightheaded feeling in my head over and over. It takes me a few hours in the morning to feel good enough to start doing things. There were 3 days I thought I felt good enough to try a light exercise and it caused my insomnia to return full force with high BP upon waking up after 1 hour of sleep. If the sleep study comes back saying I in fact do not have sleep apnea I am in big trouble as no doctor has any clue whats wrong with me.
I have come up with some theories of my own, some are a bit "out there" but I have to consider everything:
1. sleep apnea
2. Nerve damage/dysautonomia triggered by chiropractor
3. Post concussion syndrome
4. CSF leak (left ear itches everyday for years, sometimes feel wetness that is not wax when scratch)
5. I take 10mg of citalopram daily, perhaps the manufacturer changed something in the medication and it has effected me. When I refilled my prescription it does line up with when symptoms begain
6. Lyme disease
7. Nocturnal seizures
8. Cyst on top of head. Seems superficial but perhaps it is larger than I know and causing symptoms.
Hello, I am a healthy, fit 35 year old male, that before the year of 2023 was an avid gym go-er, ate healthy, and lived generally a healthy lifestyle. My occupation is EEG Technologist which I have been doing for almost 8 years. This job requires me to be in awkward positions for long periods of time and/or sitting for very long periods of time (sometimes only getting up a handful of times for some quick stretches within a 12 hour shift). This occupation has led me to have chronic back and neck pain, but not to any point where it limited anything in my life.
In 01/2023, I banged my head in my garage, I did not think I had even hit my head hard at all, but I started to have symptoms of a concussion and ended up in the ER where I was diagnosed with a concussion based off of symptoms I described only. CT scan was normal. I recovered rather quickly from the concussion and was back to myself working out feeling good.
In 02/2023, still dealing with my everyday back and neck pain, I decided to go see a chiropractor in my town. I had seen many chiropractors in the past for adjustments and it was always quick and painless, never experienced any bad side effects. At this chiropractic visit however, he did a full body adjustment including cervical manipulation, and he also did "dry needle therapy" where he put acupuncture-like needles in muscles and then attached electro stim to the needles. This burned so bad. It was very painful. He reassured me its normal to hurt but after about 5 min I had him remove everything. Immediately following the visit, my head didn't feel right, I was lightheaded and just a bit confused.
That night I experienced insomnia for the first time in my life. I slept maybe 1 hour. It felt like my brain was burning. The insomnia continued everyday for an entire month following the chiropractic visit. In addition, my pain in my neck and back became excruciating. It felt like I had been in a car accident. I went to the ER on multiple occasions thinking that the chiropractor must have caused damage that I needed to seek medical attention immediately for. The ER did an MRI brain MRA brain and MRI cervical and MRA neck ALL without contrast. All imaging was normal.
My symptoms continued to get worse: sleep was disrupted all night every night, pressure in head/eyes 24/7, When I would wake up from my short bouts of sleep I would have very high BP 180/112 (during the day I am 120/80), sometimes shaking in sleep, pain in back the worst but began feeling pain in hips, knees, calf, back pain so bad I would feel pain in my stomach, extreme fatigue 24/7. Also pain in back of my head.
I started to see a PCP who did blood work, checked vitamin levels, check testosterone levels, checked for pheochromocytoma, checked thyroid, inflammatory markers, lyme disease. Everything came back normal. The only thing that was abnormal was my lyme test was reactive for 41 KD (IGG) band. But the doctor said that I would need 2 strains in addition to this one being reactive for it to be a positive lyme test, so he said it is negative. In addition to my PCP, I saw a neurologist who did a 5 min assessment of "pull my hands push my hands" and told me he feels neuro is not the best team to treat my symptoms and dismissed me. I followed up with my cardiologist because I was experiencing an increase in chest pain and palpatations. I had a long bout of A-fib in 2021 which is when I began seeing this cardiologist, but all my tests were normal and he felt no medication was necessary at this time. He said my heart is in good condition and even though I was waking up with high BP in the middle of the night he did not want to start me on BP meds. I just did an in lab sleep study which I am waiting on the results (will receive next week).
I am going on 7 months of feeling like I am going to die any day now. I can't do much in life now. I wake up throughout the night with pressure/lightheaded feeling in my head over and over. It takes me a few hours in the morning to feel good enough to start doing things. There were 3 days I thought I felt good enough to try a light exercise and it caused my insomnia to return full force with high BP upon waking up after 1 hour of sleep. If the sleep study comes back saying I in fact do not have sleep apnea I am in big trouble as no doctor has any clue whats wrong with me.
I have come up with some theories of my own, some are a bit "out there" but I have to consider everything:
1. sleep apnea
2. Nerve damage/dysautonomia triggered by chiropractor
3. Post concussion syndrome
4. CSF leak (left ear itches everyday for years, sometimes feel wetness that is not wax when scratch)
5. I take 10mg of citalopram daily, perhaps the manufacturer changed something in the medication and it has effected me. When I refilled my prescription it does line up with when symptoms begain
6. Lyme disease
7. Nocturnal seizures
8. Cyst on top of head. Seems superficial but perhaps it is larger than I know and causing symptoms.
I had a chiropractor adjustment once. After that I had head pressure for 2 years. :( Felt like I was carrying very heavy books on my head 24/7. Since then I’ve realised I have hypermobilty in certain joints such as my neck, shoulders and wrists. Hopefully your issues will resolve like mine did.
"creatine being a trigger of A-fib"
That would be very rare. What's the purported mechanism? That mechanism would likely be part of your underlying susceptibility. A-fib in you was an oddity, so it is very likely an effect of some underlying long term susceptibility.
The vast majority of mystery cases involve immune dysfunction. The immune system is not well understood. But then you also have trauma involved. It's possible you have an immune-system over reaction to traumas - that is more severe and also much more persistent. Speaking of which, there's also possible vaxx injury.
Not to be alarmist, but we'd want to be aware of early stage symptoms in mystery conditions like MS. You can make it a hobby to watch patient accounts on youtube. MS is known to be autoimmune but otherwise is a mystery. Going along with that, is that MS is a diagnosis of exclusion -- which means "we have no sure tests and don't know too much about it, but noting else fits and so we'll go with that." Sometimes MS is even diagnosed when it is *not* present.
I mention all that about MS not to say you have it, but to show that a well known disease is still murky. Which is why I deliberately asked what inflammatory markers were tested. CRP and ESR and only acute markers, IL-6, IL-1, TNF et al. are for chronic.
When you showed up at the ER, they were obligated to check for stroke. The push/pull fits with that. But if they wanted to check for swollen nerve(s), they'd have likely used contrast, and even special settings for MRI setup protocol. If you could have any wish, that's what I think should be at top of the list.
If your reaction to the chiro's procedure were common, the chiro would not be doing that procedure - so once again you have some rare predisposition. You can search for sequelae or chronic complications of that procedure, maybe some blogger had the same very rare problems. There's a chance.
There was an MD/researcher named Theoharides who was a pioneer in brain inflammation treatment with natural anti-inflammatories. That's for a non-autoimmune type of immune dysfunction. Intracranial inflammation can explain your feelings inside the head. And also possibly nerve inflammation explains most else.
The Paroxysmal Hypertension seems at this point to be a side issue. If not pheo and not apnea, maybe something similar to a neuroblastoma especially if you had childhood symptoms.
That would be very rare. What's the purported mechanism? That mechanism would likely be part of your underlying susceptibility. A-fib in you was an oddity, so it is very likely an effect of some underlying long term susceptibility.
The vast majority of mystery cases involve immune dysfunction. The immune system is not well understood. But then you also have trauma involved. It's possible you have an immune-system over reaction to traumas - that is more severe and also much more persistent. Speaking of which, there's also possible vaxx injury.
Not to be alarmist, but we'd want to be aware of early stage symptoms in mystery conditions like MS. You can make it a hobby to watch patient accounts on youtube. MS is known to be autoimmune but otherwise is a mystery. Going along with that, is that MS is a diagnosis of exclusion -- which means "we have no sure tests and don't know too much about it, but noting else fits and so we'll go with that." Sometimes MS is even diagnosed when it is *not* present.
I mention all that about MS not to say you have it, but to show that a well known disease is still murky. Which is why I deliberately asked what inflammatory markers were tested. CRP and ESR and only acute markers, IL-6, IL-1, TNF et al. are for chronic.
When you showed up at the ER, they were obligated to check for stroke. The push/pull fits with that. But if they wanted to check for swollen nerve(s), they'd have likely used contrast, and even special settings for MRI setup protocol. If you could have any wish, that's what I think should be at top of the list.
If your reaction to the chiro's procedure were common, the chiro would not be doing that procedure - so once again you have some rare predisposition. You can search for sequelae or chronic complications of that procedure, maybe some blogger had the same very rare problems. There's a chance.
There was an MD/researcher named Theoharides who was a pioneer in brain inflammation treatment with natural anti-inflammatories. That's for a non-autoimmune type of immune dysfunction. Intracranial inflammation can explain your feelings inside the head. And also possibly nerve inflammation explains most else.
The Paroxysmal Hypertension seems at this point to be a side issue. If not pheo and not apnea, maybe something similar to a neuroblastoma especially if you had childhood symptoms.
"Cyst on top of head. Seems superficial but perhaps it is larger than I know and causing symptoms."
Same side as the bad ear?
Fow now, I'd put them in with my point #2.
Same side as the bad ear?
Fow now, I'd put them in with my point #2.
1 Comments
Cyst posterior center. I agree lack of sleep can exacerbate symptoms. Creatine would not be something that I can try due to my episodes of A-fib and creatine being a trigger of A-fib but I do like the idea of trying a different flavonoid to reduce brain inflammation. I will look more into that. As far as the scans, its all dependent on who is reading the scan on whether they note any incidental findings. It is possible something could have been overlooked.
I don't see much cause to dwell on possible apnea. Even if it does exist, it's a side issue.
Hi, here's how I'd suggest you parse out everything, to try and make organized sense out of so many effects. Most specialists won't care about this approach, because they only see their own specialty.
1. identify the proximal (immediate) cause --> likely the chiropractor
2. identify any underlying causes, which existed beforehand, which made the proximal cause much worse for you than it would for the average person
3. try to think of a plausible mechanism for any downstream effect that followed the chiro, to explain how it might indeed be downstream. Or downstream of downstream.
For #2, I'd want to know about any hyperactive immunity/inflammation which can result in a hyper reaction to physical trauma.
E.g. for #3, lack of sleep alone could have caused many downstream effects
---------------------
Or just try shot in the dark experiments, that are:
- not dangerous
- not too expensive
- not too difficult
E.g., you already know what creatine is exercise-wise, but it's also a possible anti-inflammatory for the brain, esp. concussion. The same may be for quercetin, luteolin, fisetin and other flavonoids.
------------------------
and/or add some facts to the mix
- there are other tick borne diseases besides Lyme
- it would have been nice if your MR scans had looked for nerve swelling. They seemed only looking for stroke.
- an ER is not good anyway for mystery conditions, though they are excellent for emergencies
- "inflammatory markers" I'd absolutely want to know which ones, probably a very limited set
------------------------
or seek out a Functional Medicine Internist
-------------------------------------------------------------
That's for starters.
1. identify the proximal (immediate) cause --> likely the chiropractor
2. identify any underlying causes, which existed beforehand, which made the proximal cause much worse for you than it would for the average person
3. try to think of a plausible mechanism for any downstream effect that followed the chiro, to explain how it might indeed be downstream. Or downstream of downstream.
For #2, I'd want to know about any hyperactive immunity/inflammation which can result in a hyper reaction to physical trauma.
E.g. for #3, lack of sleep alone could have caused many downstream effects
---------------------
Or just try shot in the dark experiments, that are:
- not dangerous
- not too expensive
- not too difficult
E.g., you already know what creatine is exercise-wise, but it's also a possible anti-inflammatory for the brain, esp. concussion. The same may be for quercetin, luteolin, fisetin and other flavonoids.
------------------------
and/or add some facts to the mix
- there are other tick borne diseases besides Lyme
- it would have been nice if your MR scans had looked for nerve swelling. They seemed only looking for stroke.
- an ER is not good anyway for mystery conditions, though they are excellent for emergencies
- "inflammatory markers" I'd absolutely want to know which ones, probably a very limited set
------------------------
or seek out a Functional Medicine Internist
-------------------------------------------------------------
That's for starters.
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