I wish the throat weakness would improve even just a little bit. Eating and drinking and talking is still uncomfortable and I really miss being able to sing along to my music. I'm trying to set up my ENT appointment, and then in October I have my MRI, and then in December I finally get to see a Neurologist (the appointment was made in March).
I just hope I don't keep getting worse and worse like I have been, but I'm going to try to add a lot more exercises into my routine to see if that can improve anything, especially my latest symptoms: the muscle vibration and twitching. My muscles do feel weak. I did a bit of exercise yesterday and today I was walking down the street and I almost felt like my legs were going to give out. I've never had that before.
at
September 21, 2024
It might be nothing, but the other night when I had my breathing problem episode, at some point I saw my lips were kind of blueish/purple especially on the edges. And this is the second time in a month this happened (but I can't remember what my symptoms were like the first time). I'll see if it happens again and I'll take note of my symptoms.
at
September 19, 2024
Felt blah all day, and towards the evening now my shortness of breath really got bad again. If I do anything other than lay in my bed, then every few seconds I basically have to do a big involuntary GASP as if I'm not getting enough air. It's annoying and I also start to feel lightheaded, but maybe it's all in my head. I don't know.
at
September 16, 2024
Rough day today up until the evening (weird right?). I just wasn't feeling great ever since I woke up (via alarm clock) and my head didn't feel right, felt fainty and just overall unwell, so I tried to minimize my errands a bit. Then my back started KILLING me (it's been hurting for maybe 4 days now) but it either got better by evening or all the advil started to eventually help. Oh and my dizziness got really bad earlier, when I was trying to work on my sister's old PC and monitor. I think looking at the monitor was just messing me up so bad. It hasn't been that bad in so long, it was sooo agitating and unbearable and I had to just lay down in darkness for a while.
So yeah, it really sucked in some ways, but got a bit better in the late evening and I was actually able to do a few computer things, so I'm glad about that at least.
So yeah, it really sucked in some ways, but got a bit better in the late evening and I was actually able to do a few computer things, so I'm glad about that at least.
at
September 14, 2024
The shortness of breath today is worse than ever before. My throat feels super uncomfortable. Every time I move or do things, the shortness of breath attacks me and I feel like I can barely breathe, and it makes me worried I might faint from feeling lightheadedness (hasn't happened so far).
Feeling like most of my day has been robbed from me, yet again...
Feeling like most of my day has been robbed from me, yet again...
at
September 12, 2024
It's been a long and brutal year. I think I'm ready to just rant about my problems, because I don't like doing it to my friends or family and feeling like a negative nancy. But maybe just writing things out on my blog will help me feel 1% better, and I'll take it.
I had like 5 low symptom days and then yesterday things got worse again (coincidentally once again, the day right after going to the mall). My throat fatigue stuff is really bad starting yesterday and I keep having to take many breaks when I eat or drink. My back hurts. Muscles are twitching. And that "buzzing" feeling in my muscles seems to be spreading. Oh and random pains are getting worse too, especailly in my arms or in my chest/lungs area (already triggered those twice by tossing and turning in bed).
Oh yeah, it took me hours to fall asleep again last night and I had like 5 mental breakdowns during that. It really sucked. :)
Anyway, nothing will get better if I don't do anything about it. About to book some appointments for next week!
I had like 5 low symptom days and then yesterday things got worse again (coincidentally once again, the day right after going to the mall). My throat fatigue stuff is really bad starting yesterday and I keep having to take many breaks when I eat or drink. My back hurts. Muscles are twitching. And that "buzzing" feeling in my muscles seems to be spreading. Oh and random pains are getting worse too, especailly in my arms or in my chest/lungs area (already triggered those twice by tossing and turning in bed).
Oh yeah, it took me hours to fall asleep again last night and I had like 5 mental breakdowns during that. It really sucked. :)
Anyway, nothing will get better if I don't do anything about it. About to book some appointments for next week!
at
September 12, 2024
Here's a list of possible diagnoses for my problem(s). I personally believe one problem has caused all of these symptoms to start appearing week after week, but maybe it's more than one. I haven't really found an exact match for all of my symptoms, so some things on the list might seem a little "off", but everything I've listed is here for a reason.
Things that I haven't fully ruled out yet:
✸ Neck Injury
✸ Myositis
✸ Cervical Spine Instability / Craniocervical Instability
✸ Cervical stenosis or Cervical radiculopathy (pinched nerve)
✸ Cervical Dystonia
✸ Herniated disc
✸ Vagus Nerve Disorder
✸ Tethered Spinal Cord Tension
✸ Neuromuscular Disorder (Myopathy)
✸ Fibromyalgia
✸ Vestibular Neuritis
✸ Persistent Postural-Perceptual Dizziness (PPPD)
✸ Cervical spondylosis
✸ Chiari malformation
✸ Myofascial pain syndrome
Things that are a bit more rare/extreme and may not be an exact match:
✸ Lyme Disease
✸ POTS / Dysautonomia
✸ Hypothyroidism*
✸ ALS
Things that I've tried so far, or things that may have been ruled out (read notes) :
✸ Deficiencies for: Magnesium, Potassium, B12, Vit D, Calcium, Zinc, Copper
✸ Binocular Vision Disorder (BVD) / Videonystagmography (VNG)
✸ Epstein-Barr Virus (EBV)
✸ Myasthenia Gravis*
✸ Lupus
Deficiencies: My doctor doesn't think this could be causing my problems, and also says the clinic doesnt test for some of these and that I can pay to do these tests somewhere else.
Eye problems: I had an eye exam on September 18th 2024, and everything was good. The only problems were that sometimes it was difficult / painful to follow an object that is moving upwards or close to me. The eye doctor told me it's a bit similar to what he might see in someone who had some sort of brain injury perhaps, and he told me that my eyes aren't what is likely causing any of my neck problems etc.
EBV: My doctor doesn't think this could be it since I'd have symptoms of being ill, and it doesn't last this long.
Hypothyroidism*: I think this may have been seen through blood tests or through my neck ultrasound, so I'm not as concerned about this one.
Vestibular Neuritis: This is still on my diagnosis list because I'm not 100% sure if it was something that was ruled out with all the eye tests I did with my physiotherapist and the eye exam, however I feel like it may have been. The one main note my physiotheraist followed up with me on regarding the eye tests she did was that I have decreased vestibulo-ocular reflex (VOR).
Myasthenia Gravis*: Because my eyelids work fine, my Neurologist thinks there isn't a chance it's MG.
Lupus: I ruled this out with a private blood test in late December 2024.
Things that I haven't fully ruled out yet:
✸ Neck Injury
✸ Myositis
✸ Cervical Spine Instability / Craniocervical Instability
✸ Cervical stenosis or Cervical radiculopathy (pinched nerve)
✸ Cervical Dystonia
✸ Herniated disc
✸ Vagus Nerve Disorder
✸ Tethered Spinal Cord Tension
✸ Neuromuscular Disorder (Myopathy)
✸ Fibromyalgia
✸ Vestibular Neuritis
✸ Persistent Postural-Perceptual Dizziness (PPPD)
✸ Cervical spondylosis
✸ Chiari malformation
✸ Myofascial pain syndrome
Things that are a bit more rare/extreme and may not be an exact match:
✸ Lyme Disease
✸ POTS / Dysautonomia
✸ Hypothyroidism*
✸ ALS
Things that I've tried so far, or things that may have been ruled out (read notes) :
✸ Binocular Vision Disorder (BVD) / Videonystagmography (VNG)
✸ Epstein-Barr Virus (EBV)
✸ Myasthenia Gravis*
✸ Lupus
Eye problems: I had an eye exam on September 18th 2024, and everything was good. The only problems were that sometimes it was difficult / painful to follow an object that is moving upwards or close to me. The eye doctor told me it's a bit similar to what he might see in someone who had some sort of brain injury perhaps, and he told me that my eyes aren't what is likely causing any of my neck problems etc.
EBV: My doctor doesn't think this could be it since I'd have symptoms of being ill, and it doesn't last this long.
Hypothyroidism*: I think this may have been seen through blood tests or through my neck ultrasound, so I'm not as concerned about this one.
Vestibular Neuritis: This is still on my diagnosis list because I'm not 100% sure if it was something that was ruled out with all the eye tests I did with my physiotherapist and the eye exam, however I feel like it may have been. The one main note my physiotheraist followed up with me on regarding the eye tests she did was that I have decreased vestibulo-ocular reflex (VOR).
Myasthenia Gravis*: Because my eyelids work fine, my Neurologist thinks there isn't a chance it's MG.
Lupus: I ruled this out with a private blood test in late December 2024.
at
September 03, 2024
For the most part, my symptoms started in March 2024. I'm going to list my current symptoms in order of appearance, and then underneath I'll go into more details.
✸ A few bouts of vertigo
✸ Cervicogenic dizziness
✸ Cracking/popping in my neck
✸ Shooting pains in my neck & shoulders
✸ Choking sensation
✸ Throat weakness / fatigue and Cervicogenic dysphagia
✸ Shortness of breath (usually accompanied by the above)
✸ Occipital Pain / Neuralgia (self-diagnosed)
✸ Jolting awake while falling asleep (usually accompanied by the above)
✸ Muscle twitches / vibration / buzzing / internal tremors
✸ Aches, mostly at night (muscles or bones or joints, it's hard to tell)
✸ Seeing "stars" in my vision, happening more requently and randomly
✸ Seeing "dark spots" in my vision randomly, usually in short flashes
And some other symptoms that may or may not be related:
✸ Headaches
✸ Fatigue
✸ Sensitivity to sights and sounds
✸ Tinnitus
✸ Arm(s) sometimes going numb at night
✸ Tingling sensations (pinched nerves?)
✸ Chills
✸ Nausea
Vertigo: March 2024: The first thing that happened was that I got woken up from my sleep because of the room spinning. It lasted a few seconds. It also returned briefly a few more times depending on which positions I was in, maybe a couple of nights that week, but I haven't had it since.
Cervicogenic Dizziness: This I started noticing a few days after the spinning vertigo, first when my friend was scrolling on the laptop, and it made my brain all "whoa!" and felt weird. Ever since then, it got worse, and has never gone away. The best days I get are when the dizziness is maybe a 3/10 and I can still do a lot of things with minimal "dizzy discomfort". The worst day that I had, when I consider it a 10/10, it was so bad that I was struggling to do anything and everything was so uncomfortable and agitating. I couldn't even lay in bed and watch a movie because looking at anything was pretty much "painful". For me, as soon as my dizziness reaches a level of 7/10, then I know it might take a while before it goes down a bit. I'm also not sure if what I refer to as "dizziness" is the same thing as others would, because it's an uncomfortable feeling that's very hard to put into words.
I will say though that for me, the two main things that really make my dizziness much worse and unbearable often are: going to the mall, and using my computer (especially scrolling and seeing things that move).
I actually didn't know this was cervicogenic dizziness until after the next symptom arrived. Initially I just thought I had BPPV, which I ruled out on my own and then once again by my physiotherapist.
Cracking/popping in my neck: This appeared a few weeks after the dizziness began. It's not your usual "ah my neck randomly cracked" type of thing. It's a lot of crackling popping sounds, that happen every single day, multiple times a day, during various neck movements. They make me uneasy, but it doesn't come with pain.
Shooting pains in my neck & shoulders: This appeared a few weeks after the cracking in my neck and got worse and worse until I implemented more massaging. The pains have also been all over the place and constantly changing where they are.
Choking sensation: This appeared about a month or more after the pains started. When this started it was kind of bad and really annoying. There was one day where I felt the choking sensation the entire day which really sucked. In the last month it slowed down a bit, but I realized it still gently arrives again especailly if I've done a lot of neck massaging or stretching.
Throat weakness / fatigue: This started about a month ago, and when it did it was pretty annoying. I first noticed it when trying to sing to my music, and I could barely sing one song, because my throat would just get fatigued and uncomfortable. I also noticed it when trying to eat or drink. It went down a bit after a while, and then came back worse again.
Occipital pain: Not sure if it's related, but not long after I started massaging my neck/shoulders a lot, my occipital area started to hurt a lot. Sometimes jolting pains. It hurt so much just to touch my scalp and it went pretty high up. I think this might be what kept me awake many nights.
Jolting awake while falling asleep: Like I mentioned, it's possible this is related mostly to when my occipital area hurts more. This is not the same thing as your usual "jolting away right before falling asleep" type feeling. This one feels much more uncomfortable, and it almost feels at times like my occipital area sort of "zaps" me. I can't explain it. Anyway, within a span of a couple of weeks I had four nights where it took me over 4.5 hours to fall asleep. It really really sucked. I had many mental breakdowns...
Muscles twitches / internal tremors: I'm not sure if "internal tremors" is accurate but based on my research, I think it might be. This gradually started in my upper back but now it's spraeding everywhere, and I mostly feel it if I stop or sit down, and especailly at night while trying to sleep. It's mostly uncomfortable, but not nearly as bad as any other symptom I've had so far.
The other symptoms: As for the other symptoms that may or may not be related, I'm sure a bunch of them are a result of this, but they might not happen as often or they might seem like an isolated thing, so I'm just not sure about these yet!
✸ A few bouts of vertigo
✸ Cervicogenic dizziness
✸ Cracking/popping in my neck
✸ Shooting pains in my neck & shoulders
✸ Choking sensation
✸ Throat weakness / fatigue and Cervicogenic dysphagia
✸ Shortness of breath (usually accompanied by the above)
✸ Occipital Pain / Neuralgia (self-diagnosed)
✸ Jolting awake while falling asleep (usually accompanied by the above)
✸ Muscle twitches / vibration / buzzing / internal tremors
✸ Aches, mostly at night (muscles or bones or joints, it's hard to tell)
✸ Seeing "stars" in my vision, happening more requently and randomly
✸ Seeing "dark spots" in my vision randomly, usually in short flashes
And some other symptoms that may or may not be related:
✸ Headaches
✸ Fatigue
✸ Sensitivity to sights and sounds
✸ Tinnitus
✸ Arm(s) sometimes going numb at night
✸ Tingling sensations (pinched nerves?)
✸ Chills
✸ Nausea
Vertigo: March 2024: The first thing that happened was that I got woken up from my sleep because of the room spinning. It lasted a few seconds. It also returned briefly a few more times depending on which positions I was in, maybe a couple of nights that week, but I haven't had it since.
Cervicogenic Dizziness: This I started noticing a few days after the spinning vertigo, first when my friend was scrolling on the laptop, and it made my brain all "whoa!" and felt weird. Ever since then, it got worse, and has never gone away. The best days I get are when the dizziness is maybe a 3/10 and I can still do a lot of things with minimal "dizzy discomfort". The worst day that I had, when I consider it a 10/10, it was so bad that I was struggling to do anything and everything was so uncomfortable and agitating. I couldn't even lay in bed and watch a movie because looking at anything was pretty much "painful". For me, as soon as my dizziness reaches a level of 7/10, then I know it might take a while before it goes down a bit. I'm also not sure if what I refer to as "dizziness" is the same thing as others would, because it's an uncomfortable feeling that's very hard to put into words.
I will say though that for me, the two main things that really make my dizziness much worse and unbearable often are: going to the mall, and using my computer (especially scrolling and seeing things that move).
I actually didn't know this was cervicogenic dizziness until after the next symptom arrived. Initially I just thought I had BPPV, which I ruled out on my own and then once again by my physiotherapist.
Cracking/popping in my neck: This appeared a few weeks after the dizziness began. It's not your usual "ah my neck randomly cracked" type of thing. It's a lot of crackling popping sounds, that happen every single day, multiple times a day, during various neck movements. They make me uneasy, but it doesn't come with pain.
Shooting pains in my neck & shoulders: This appeared a few weeks after the cracking in my neck and got worse and worse until I implemented more massaging. The pains have also been all over the place and constantly changing where they are.
Choking sensation: This appeared about a month or more after the pains started. When this started it was kind of bad and really annoying. There was one day where I felt the choking sensation the entire day which really sucked. In the last month it slowed down a bit, but I realized it still gently arrives again especailly if I've done a lot of neck massaging or stretching.
Throat weakness / fatigue: This started about a month ago, and when it did it was pretty annoying. I first noticed it when trying to sing to my music, and I could barely sing one song, because my throat would just get fatigued and uncomfortable. I also noticed it when trying to eat or drink. It went down a bit after a while, and then came back worse again.
Occipital pain: Not sure if it's related, but not long after I started massaging my neck/shoulders a lot, my occipital area started to hurt a lot. Sometimes jolting pains. It hurt so much just to touch my scalp and it went pretty high up. I think this might be what kept me awake many nights.
Jolting awake while falling asleep: Like I mentioned, it's possible this is related mostly to when my occipital area hurts more. This is not the same thing as your usual "jolting away right before falling asleep" type feeling. This one feels much more uncomfortable, and it almost feels at times like my occipital area sort of "zaps" me. I can't explain it. Anyway, within a span of a couple of weeks I had four nights where it took me over 4.5 hours to fall asleep. It really really sucked. I had many mental breakdowns...
Muscles twitches / internal tremors: I'm not sure if "internal tremors" is accurate but based on my research, I think it might be. This gradually started in my upper back but now it's spraeding everywhere, and I mostly feel it if I stop or sit down, and especailly at night while trying to sleep. It's mostly uncomfortable, but not nearly as bad as any other symptom I've had so far.
The other symptoms: As for the other symptoms that may or may not be related, I'm sure a bunch of them are a result of this, but they might not happen as often or they might seem like an isolated thing, so I'm just not sure about these yet!
at
September 03, 2024
Welcome.
It's 6pm and I'm writing here from my bed, sleep deprived, with a heating bottle behind my neck. I guess the nice thing about being sleep deprived is that it makes you feel pretty tired and numb, but it still doesn't stop me from feeling sorry for myself.
I'm starting this blog because I'm tired of living with some mystery health problem, and I guess the least I could do is try to pay close attention to all my symptoms and keep track of my progress - and maybe find someone else along the way who seems to share this problem too.
What I think I'm dealing with are symptoms that stem from either my cervical spine or my neck muscles, with the first and longest symptom being cervicogenic dizziness (but many more arrived afterwards), so I'm going to write some blog entries explaining my symptoms, thoughts, and things I've tried. Keep in mind I'll probably be re-editing posts as new things happen!
It's 6pm and I'm writing here from my bed, sleep deprived, with a heating bottle behind my neck. I guess the nice thing about being sleep deprived is that it makes you feel pretty tired and numb, but it still doesn't stop me from feeling sorry for myself.
I'm starting this blog because I'm tired of living with some mystery health problem, and I guess the least I could do is try to pay close attention to all my symptoms and keep track of my progress - and maybe find someone else along the way who seems to share this problem too.
What I think I'm dealing with are symptoms that stem from either my cervical spine or my neck muscles, with the first and longest symptom being cervicogenic dizziness (but many more arrived afterwards), so I'm going to write some blog entries explaining my symptoms, thoughts, and things I've tried. Keep in mind I'll probably be re-editing posts as new things happen!
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