22/f/125 lbs/5’7/non smoker/don’t drink anymore
Hi, I never thought I’d resort to asking for help on here but I’m desperate for any answers as I’ve seen SO many specialists and doctors and have been told so many different things and yet I’m still dealing with my issues today. I’ve lost over a year of my life and I’m just so drained from dealing with these lasting symptoms for over a year- I had to quit my job and take a indefinite break from school, and now I’m having to navigate through possible treatment options on my own while not being supported by absolutely anybody. I want to apologize for the length of this post too, but I just want to give as much info as possible and I have been through a LOT in the past year. Seriously a lot. And I don’t know what to do anymore.
I’ll try to split this into sections so it’s easier to read. More info at the end about other testing I’ve had done, where I am today, my experience with two specialists I’ve seen, testing, etc.
How it started: I had a concussion in July 2019. I was intoxicated in a bathroom and somehow thought that there was a shower curtain behind me, tried to lean back on it but fell backwards and hit the back of my head somewhere between the very bottom of the wall and/or floor in the stand up shower. So there was definitely impact but I don’t think I lost consciousness. I remember hitting my head pretty hard and not realizing I was on the ground for a few seconds. I felt nauseous and my head was pounding but I never threw up.. so I iced it and my friends even convinced me to stay out longer.
The next day: So after a few hours of sleep I felt BAD. I couldn’t think straight or concentrate and my balance was very off. My head was pounding and I was fatigued and confused. Definitely a concussion. I went to a walk in clinic and got assessed by a general physician and a neurologist who happened to be there and they both did a physical exam and said I was “fine”- if anything it was a “minor concussion” and that I had a noticeable “goose egg” on the back of my head where I hit it. They told me to go home and rest but also sent me home with antibiotics (teva-doxycycline 100mg for a week) as I coincidentally had an infection on my stomach (folliculitis) but in hindsight I’ve been told antibiotics right after a concussion are a bad idea. Last year I was already dealing with horrible bloating/gut issues after working with a naturopath for my pcos. I was on so many different supplements leading up to the injury including omega, zinc, l-glutamine powder, reishi, Collagen powder, pygeum & saw palmetto, magnesium, probiotic, etc. Anyways, I remember feeling very dizzy for a week and blamed it on the antibiotics. That week I also couldn’t move my head to look left or right as it felt incredibly stiff but eventually it got better after heating the area.
A few days later I went to the hospital because I felt worse and they officially diagnosed me with “concussion”. 4 days after the injury I recorded the following symptoms: Slow reaction time, Not feeling myself/feeling off, Poor sense of balance (constantly feels like I’m on a boat), Dizziness, Nausea, Severe Anxiety and Depression, Hard to think and concentrate, Head hurts, Hurts to chew, Slight ringing in my ears, Even Lying Down it felt like I was on a moving vehicle, Super tired/fatigued, Harder to pick things up with my right hand (weakness). So then after two or three weeks of resting, popping advil, and minimizing my phone time and not leaving my house, I felt a lot better. I still had some balance issues but not nearly as bad. I was probably feeling 90% back to normal. I do remember if I leaned over to brush my teeth or something and stood up straight I’d feel off balance (like on a boat) and have to take a moment to readjust but otherwise I was able to slowly return to school and work and even went to the club twice at the end of August. I even somehow drank once and didn’t even wake up feeling worse the next day.
6 Weeks after Injury: So fast forward to about 6 weeks after the concussion.. in September 2019. I was feeling fine. I wasn’t worried about the slight dizziness as it wasn’t really affecting me or my daily life unless sometimes if I moved too quick- but overall I wasn’t too preoccupied with it. I made the really poor decision of getting dermal filler that day- I had scheduled an appointment for my chin area months in advance (which made me anxious but it was something I had wanted for years and the nurse completely convinced me that my concussion would not interfere with my appointment or results). I thought it would be fine as I had gotten a different brand of filler before in my lips and nasolabial folds from a different nurse months prior and had absolutely no issues. After I got the filler, my symptoms all of a sudden came back that same week- extreme anxiety and dizziness/vertigo/balance issues, fatigue, depression, headaches... I quite literally felt like I was going to die. My biggest concern was the constant feeling of moving when I wasn’t moving and when I was moving - feeling off balance still.
I went to the hospital and they did a CT scan which came back normal and said it was all in my head. Recommended antidepressants and sent me home. Blamed it on my anxiety. I got referred to a neurologist/physiotherapist concussion clinic from the hospital but they had no idea how to treat me there and the physiotherapist said she had never seen a case where symptoms went away and came back. I spoke to the neurologist there too and he didn’t assess me at all- just recommended physio and said it was “vertigo” and said I’d be fine in a few weeks.
First Specialist: Then I felt desperate (and hopeless) and found this podcast of a “concussion expert” who had very good reviews with professional athletes. He happened to be a chiropractor near me and he said that he didn’t even think it should be diagnosed as vertigo because it almost felt better some days and absolutely debilitating others. My dizziness wasn’t described as the room spinning and so he thought it was result of whiplash and said it was also probably anxiety and hormonal related as I’ve also been diagnosed with pcos before (hormonal imbalance with very low progesterone and very high testosterone). I saw him from September-December 2019, going in for weekly adjustments for my neck and although it would help, it never really “cured” the dizziness even after all those appointments so I knew I needed to try something else.
Second Specialist: I then started seeing a functional neurologist/chiropractor who specializes in balance and vestibular disorders. I’ve been seeing him since he first assessed me in February 2020. He’s been so much more thorough with his assessments than I’ve had with anyone else. He said I have chronic subjective vertigo aka Persistent postural-perceptual dizziness (or PPPD). He thinks my gut health and anxiety health history have worsened my case and that I have basically trained myself to have this constant, memorized loop of dizziness. The vertigo in itself has never actually been the spinning room sensation, but always just like feeling like I’m dealing with off balance or like I’m on a boat. As of recently I’ve had a few moments where I’ll be minding my business and then all of a sudden, I’m paralyzed with fear as my body feels as if it’s being jerked but the room doesn’t move with it. It lasts a few seconds usually and it’s almost like I black out a bit because it’s all I can focus on. Anyways, he has done both physical exams (reflexes, checking movements, etc) as well as eye exams using goggles and a machine which tracks your eye movements. In the very beginning I remember I had issues with missing a moving dot target 30% of the time when it was going down although that has since been fixed and also some testing which pointed to maybe an inner ear thing in the beginning. All of my testing has since come back normal and over the months he has gotten me to almost 100% back to normal according to the testing. This sounds like good news but considering I still have symptoms, it’s actually been more frustrating than anything.
He gave me exercises that are neuroplasticity based to do at home (like different thumb and eye movements to strengthen different parts of my brain that have been affected) and then in office, once weekly to track my fatigue and worsening or improvement of symptoms. It has overall improved my dizziness but I am still dealing with it. It feels better when I am lying down now or sitting but definitely worsens when I am upright or moving from upright to sitting or vice versa. I feel fatigued a lot quicker. I have also been on an AIP paleo diet since February to deal with any possible inflammation (he thinks getting the filler was a horrible idea right after a concussion as it produced an inflammatory response and made my dizziness worse) and then I was on omega 3x daily for months.
Note: I did hit my head a second time in June 2020. I was looking down while walking into my house and hit my head on my heavy garage door that was opening from the ground up. It hurt my head and made me really tired and fatigued and my head was throbbing so I iced it, but it didn’t seem to worsen my symptoms and I felt back to how I felt right before hitting it (for the second time) just a few days later. My functional neuro also didn’t notice any difference in my symptoms.
More Health History: Long history of anxiety (I’ve been diagnosed with panic disorder, generalized anxiety disorder and social anxiety and was on prozac from ages 15-20), history of some depression as well, have had a hormonal imbalance since I was about 12 with my first menstrual cycle which later figured out was Polycystic Ovarian Syndrome (or pcos) and sought out many naturopaths and nutritionists and other practitioners to get treatment which ended up in a huge pile of supplements over the past few years at any given time. I’ve had a long history of nose bleeds as well (always been dismissed by doctors over this- had nosebleeds before AND right after my concussion as well, but I’ve had blood tests and blood clotting tests after the concussion which came out normal.. think it might be due to deviated septum), I’m also always freezing and never thirsty so I suspect metabolism or thyroid issues, history of walking on my toes as well over the years (especially on stairs) but interestingly enough I am not autistic and nobody has ever suggested I could be. History of poor immune system. I’ve also always had issues with short term memory (not for everything but I’ll always question if I just did a certain thing like taking a pill) and since the injury it’s been harder to remember names whereas that was always a strength of mine before.
Other testing: I had an ECG/stress test to check my heart after I had chest pain beginning of this year (and i’m guessing possibly check for POTS) but it came back normal (although I do get heart palpitations sometimes which has been going on for years and there is something in my heart that beats a bit more than normal but both doctors said it isn’t a concern). I had an endoscopy as I’m still dealing with bloating but that came out normal too so the doctor there said I could possibly have IBS (although I honestly don’t think I do). Also got my eyes tested beginning of this year and my vision did get slightly worse but was told not to stress because my vision is already really poor and my last test was two years ago so that was to be expected. Like previously mentioned, I had a full blood test done earlier this year which included thyroid and came back in range. I just had an audiologist test me as well and she said that my ear drums look normal and she said nothing looked out of the ordinary from what she could see but I still need to wait a week for my actual results.
Where I am now: I just generally feel off and scared. It went from rocking on a boat with huge waves to smaller boat and waves, lightheadedness sometimes and constantly feeling like I’m going to lose my balance and fall over or trip. My legs tend to feel wobbly when I stand too long. I have noticed my arms and hands (usually the right side) feels weaker. When I am simply standing still, I feel like I’m moving when I know I am not, and then even with walking I don’t feel steady/stable and I often find myself leaning against things or holding onto people. Occasionally the floor underneath me looks like it has shifted or moves and I feel myself being jerked with it. Or the room almost appears to be breathing sometimes (weird description I know) but sometimes can see things shifting slightly and the room can look like it is slightly swinging.
I notice that my right eye twitches sometimes which coincidentally is also the eye that my functional neuro noticed the pupil was slightly bigger which he said could indicate I was in a chronic fight or flight state for months. And my pupils weren’t moving whenever he shone a light on them (but was able to fix that after months of treatments). I get the rare headache still and sometimes my head and base of neck feels pressured. I still deal with fatigue especially with moving around- I’ll have to rest after and I’ve also noticed earbuds playing loud music can leave me feeling fatigued too.
My ears constantly feel like they are stuffy and I am constantly popping them by yawning or inhaling heavier. If a place is too loud or crowded it can set me off. Sometimes my legs feel weak and I deal with slight leg/muscle twitching or I guess spasms, especially after walking my dog. I seem to be fine on phones now and with screens but for a while even that was too much (especially the up and down scrolling). My ears both always have slight ringing too. He has tried the epley maneuver on me a few times but obviously it didn’t cure it and he believes this isn’t crystal based. It did trigger heavier ringing in my ears once while doing it though. My body also tightens up when I stand in fear of falling over.. but when I close my eyes and put my feet together I have a slight sway (although this has really improved over the months too because of my dr and I’m not actually falling over anymore like I did in the beginning- I’d fall back and to the right usually). I also get numbness in my feet and sometimes rarely I’ll notice it in my crotch area or even head too. Overall I kind of feel like I have poor circulation. I also deal with slight Buzzing in the head – feels like vibrations or a short circuit. I get bouncing when walking – “Marshmallow feet”. Every movement feels "off" and not clear at all - a bit like you are moving through "thick air". Basically, feeling drunk when you definitely aren’t. My functional neuro is also a chiropractor and he would also adjust my neck and spine as I’ve always had bad lower back pain and I’m constantly cracking it. Our appointments went from twice a week to being on pause though as he’s running out of ideas with what to try and doesn’t want to waste my money. I just don’t know what else to do.
So that’s my story. THANK YOU for your time. I am hoping someone out there will be able to offer any advice because I’m stuck. My next step is waiting to get a ENT appointment in February but I don’t know what else I can do in the meantime.
22/f/125 lbs/5’7/non smoker/don’t drink anymoreHi, I never thought I’d resort to asking for help on here but I’m desperate for any answers as I’ve seen SO many specialists and doctors and have been told so many different things and yet I’m still dealing with my issues today. I’ve lost over a year of my life and I’m just so drained from dealing with these lasting symptoms for over a year- I had to quit my job and take a indefinite break from school, and now I’m having to navigate through possible treatment options on my own while not being supported by absolutely anybody. I want to apologize for the length of this post too, but I just want to give as much info as possible and I have been through a LOT in the past year. Seriously a lot. And I don’t know what to do anymore.I’ll try to split this into sections so it’s easier to read. More info at the end about other testing I’ve had done, where I am today, my experience with two specialists I’ve seen, testing, etc.How it started: I had a concussion in July 2019. I was intoxicated in a bathroom and somehow thought that there was a shower curtain behind me, tried to lean back on it but fell backwards and hit the back of my head somewhere between the very bottom of the wall and/or floor in the stand up shower. So there was definitely impact but I don’t think I lost consciousness. I remember hitting my head pretty hard and not realizing I was on the ground for a few seconds. I felt nauseous and my head was pounding but I never threw up.. so I iced it and my friends even convinced me to stay out longer.The next day: So after a few hours of sleep I felt BAD. I couldn’t think straight or concentrate and my balance was very off. My head was pounding and I was fatigued and confused. Definitely a concussion. I went to a walk in clinic and got assessed by a general physician and a neurologist who happened to be there and they both did a physical exam and said I was “fine”- if anything it was a “minor concussion” and that I had a noticeable “goose egg” on the back of my head where I hit it. They told me to go home and rest but also sent me home with antibiotics (teva-doxycycline 100mg for a week) as I coincidentally had an infection on my stomach (folliculitis) but in hindsight I’ve been told antibiotics right after a concussion are a bad idea. Last year I was already dealing with horrible bloating/gut issues after working with a naturopath for my pcos. I was on so many different supplements leading up to the injury including omega, zinc, l-glutamine powder, reishi, Collagen powder, pygeum & saw palmetto, magnesium, probiotic, etc. Anyways, I remember feeling very dizzy for a week and blamed it on the antibiotics. That week I also couldn’t move my head to look left or right as it felt incredibly stiff but eventually it got better after heating the area.A few days later I went to the hospital because I felt worse and they officially diagnosed me with “concussion”. 4 days after the injury I recorded the following symptoms: Slow reaction time, Not feeling myself/feeling off, Poor sense of balance (constantly feels like I’m on a boat), Dizziness, Nausea, Severe Anxiety and Depression, Hard to think and concentrate, Head hurts, Hurts to chew, Slight ringing in my ears, Even Lying Down it felt like I was on a moving vehicle, Super tired/fatigued, Harder to pick things up with my right hand (weakness). So then after two or three weeks of resting, popping advil, and minimizing my phone time and not leaving my house, I felt a lot better. I still had some balance issues but not nearly as bad. I was probably feeling 90% back to normal. I do remember if I leaned over to brush my teeth or something and stood up straight I’d feel off balance (like on a boat) and have to take a moment to readjust but otherwise I was able to slowly return to school and work and even went to the club twice at the end of August. I even somehow drank once and didn’t even wake up feeling worse the next day.6 Weeks after Injury: So fast forward to about 6 weeks after the concussion.. in September 2019. I was feeling fine. I wasn’t worried about the slight dizziness as it wasn’t really affecting me or my daily life unless sometimes if I moved too quick- but overall I wasn’t too preoccupied with it. I made the really poor decision of getting dermal filler that day- I had scheduled an appointment for my chin area months in advance (which made me anxious but it was something I had wanted for years and the nurse completely convinced me that my concussion would not interfere with my appointment or results). I thought it would be fine as I had gotten a different brand of filler before in my lips and nasolabial folds from a different nurse months prior and had absolutely no issues. After I got the filler, my symptoms all of a sudden came back that same week- extreme anxiety and dizziness/vertigo/balance issues, fatigue, depression, headaches... I quite literally felt like I was going to die. My biggest concern was the constant feeling of moving when I wasn’t moving and when I was moving - feeling off balance still.I went to the hospital and they did a CT scan which came back normal and said it was all in my head. Recommended antidepressants and sent me home. Blamed it on my anxiety. I got referred to a neurologist/physiotherapist concussion clinic from the hospital but they had no idea how to treat me there and the physiotherapist said she had never seen a case where symptoms went away and came back. I spoke to the neurologist there too and he didn’t assess me at all- just recommended physio and said it was “vertigo” and said I’d be fine in a few weeks.First Specialist: Then I felt desperate (and hopeless) and found this podcast of a “concussion expert” who had very good reviews with professional athletes. He happened to be a chiropractor near me and he said that he didn’t even think it should be diagnosed as vertigo because it almost felt better some days and absolutely debilitating others. My dizziness wasn’t described as the room spinning and so he thought it was result of whiplash and said it was also probably anxiety and hormonal related as I’ve also been diagnosed with pcos before (hormonal imbalance with very low progesterone and very high testosterone). I saw him from September-December 2019, going in for weekly adjustments for my neck and although it would help, it never really “cured” the dizziness even after all those appointments so I knew I needed to try something else.Second Specialist: I then started seeing a functional neurologist/chiropractor who specializes in balance and vestibular disorders. I’ve been seeing him since he first assessed me in February 2020. He’s been so much more thorough with his assessments than I’ve had with anyone else. He said I have chronic subjective vertigo aka Persistent postural-perceptual dizziness (or PPPD). He thinks my gut health and anxiety health history have worsened my case and that I have basically trained myself to have this constant, memorized loop of dizziness. The vertigo in itself has never actually been the spinning room sensation, but always just like feeling like I’m dealing with off balance or like I’m on a boat. As of recently I’ve had a few moments where I’ll be minding my business and then all of a sudden, I’m paralyzed with fear as my body feels as if it’s being jerked but the room doesn’t move with it. It lasts a few seconds usually and it’s almost like I black out a bit because it’s all I can focus on. Anyways, he has done both physical exams (reflexes, checking movements, etc) as well as eye exams using goggles and a machine which tracks your eye movements. In the very beginning I remember I had issues with missing a moving dot target 30% of the time when it was going down although that has since been fixed and also some testing which pointed to maybe an inner ear thing in the beginning. All of my testing has since come back normal and over the months he has gotten me to almost 100% back to normal according to the testing. This sounds like good news but considering I still have symptoms, it’s actually been more frustrating than anything.He gave me exercises that are neuroplasticity based to do at home (like different thumb and eye movements to strengthen different parts of my brain that have been affected) and then in office, once weekly to track my fatigue and worsening or improvement of symptoms. It has overall improved my dizziness but I am still dealing with it. It feels better when I am lying down now or sitting but definitely worsens when I am upright or moving from upright to sitting or vice versa. I feel fatigued a lot quicker. I have also been on an AIP paleo diet since February to deal with any possible inflammation (he thinks getting the filler was a horrible idea right after a concussion as it produced an inflammatory response and made my dizziness worse) and then I was on omega 3x daily for months.Note: I did hit my head a second time in June 2020. I was looking down while walking into my house and hit my head on my heavy garage door that was opening from the ground up. It hurt my head and made me really tired and fatigued and my head was throbbing so I iced it, but it didn’t seem to worsen my symptoms and I felt back to how I felt right before hitting it (for the second time) just a few days later. My functional neuro also didn’t notice any difference in my symptoms.More Health History: Long history of anxiety (I’ve been diagnosed with panic disorder, generalized anxiety disorder and social anxiety and was on prozac from ages 15-20), history of some depression as well, have had a hormonal imbalance since I was about 12 with my first menstrual cycle which later figured out was Polycystic Ovarian Syndrome (or pcos) and sought out many naturopaths and nutritionists and other practitioners to get treatment which ended up in a huge pile of supplements over the past few years at any given time. I’ve had a long history of nose bleeds as well (always been dismissed by doctors over this- had nosebleeds before AND right after my concussion as well, but I’ve had blood tests and blood clotting tests after the concussion which came out normal.. think it might be due to deviated septum), I’m also always freezing and never thirsty so I suspect metabolism or thyroid issues, history of walking on my toes as well over the years (especially on stairs) but interestingly enough I am not autistic and nobody has ever suggested I could be. History of poor immune system. I’ve also always had issues with short term memory (not for everything but I’ll always question if I just did a certain thing like taking a pill) and since the injury it’s been harder to remember names whereas that was always a strength of mine before.Other testing: I had an ECG/stress test to check my heart after I had chest pain beginning of this year (and i’m guessing possibly check for POTS) but it came back normal (although I do get heart palpitations sometimes which has been going on for years and there is something in my heart that beats a bit more than normal but both doctors said it isn’t a concern). I had an endoscopy as I’m still dealing with bloating but that came out normal too so the doctor there said I could possibly have IBS (although I honestly don’t think I do). Also got my eyes tested beginning of this year and my vision did get slightly worse but was told not to stress because my vision is already really poor and my last test was two years ago so that was to be expected. Like previously mentioned, I had a full blood test done earlier this year which included thyroid and came back in range. I just had an audiologist test me as well and she said that my ear drums look normal and she said nothing looked out of the ordinary from what she could see but I still need to wait a week for my actual results.Where I am now: I just generally feel off and scared. It went from rocking on a boat with huge waves to smaller boat and waves, lightheadedness sometimes and constantly feeling like I’m going to lose my balance and fall over or trip. My legs tend to feel wobbly when I stand too long. I have noticed my arms and hands (usually the right side) feels weaker. When I am simply standing still, I feel like I’m moving when I know I am not, and then even with walking I don’t feel steady/stable and I often find myself leaning against things or holding onto people. Occasionally the floor underneath me looks like it has shifted or moves and I feel myself being jerked with it. Or the room almost appears to be breathing sometimes (weird description I know) but sometimes can see things shifting slightly and the room can look like it is slightly swinging.I notice that my right eye twitches sometimes which coincidentally is also the eye that my functional neuro noticed the pupil was slightly bigger which he said could indicate I was in a chronic fight or flight state for months. And my pupils weren’t moving whenever he shone a light on them (but was able to fix that after months of treatments). I get the rare headache still and sometimes my head and base of neck feels pressured. I still deal with fatigue especially with moving around- I’ll have to rest after and I’ve also noticed earbuds playing loud music can leave me feeling fatigued too.My ears constantly feel like they are stuffy and I am constantly popping them by yawning or inhaling heavier. If a place is too loud or crowded it can set me off. Sometimes my legs feel weak and I deal with slight leg/muscle twitching or I guess spasms, especially after walking my dog. I seem to be fine on phones now and with screens but for a while even that was too much (especially the up and down scrolling). My ears both always have slight ringing too. He has tried the epley maneuver on me a few times but obviously it didn’t cure it and he believes this isn’t crystal based. It did trigger heavier ringing in my ears once while doing it though. My body also tightens up when I stand in fear of falling over.. but when I close my eyes and put my feet together I have a slight sway (although this has really improved over the months too because of my dr and I’m not actually falling over anymore like I did in the beginning- I’d fall back and to the right usually). I also get numbness in my feet and sometimes rarely I’ll notice it in my crotch area or even head too. Overall I kind of feel like I have poor circulation. I also deal with slight Buzzing in the head – feels like vibrations or a short circuit. I get bouncing when walking – “Marshmallow feet”. Every movement feels "off" and not clear at all - a bit like you are moving through "thick air". Basically, feeling drunk when you definitely aren’t. My functional neuro is also a chiropractor and he would also adjust my neck and spine as I’ve always had bad lower back pain and I’m constantly cracking it. Our appointments went from twice a week to being on pause though as he’s running out of ideas with what to try and doesn’t want to waste my money. I just don’t know what else to do.So that’s my story. THANK YOU for your time. I am hoping someone out there will be able to offer any advice because I’m stuck. My next step is waiting to get a ENT appointment in February but I don’t know what else I can do in the meantime. https://ift.tt/eA8V8J https://ift.tt/2TvSD5A
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