Vertigo Sufferers and Making an Income.....Finding a Way to Relieve Income Loss

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Hi, my name is Crysta Lee and I have suffered from vertigo for the last 8 years, shortly after I had four dental implants surgically placed, an infection brewed I had no idea I had as it didn't have symptoms, until nearly 6 years after when one of my implants began to fall out. The Dentist sat down and gave me the news I dreaded. I had a severe bone infection called Maxilla Osteomyelitis, a rare type of bone infection in the face that Dr.s are not used to seeing. My luck, right? Following a massive surgery in the dental chair and more than 20 stitches in my upper mouth where the implant once was, I went home only to wake an hour later to my entire face swollen more than three times it's size. Panicked, off to the hospital E.R. I went, running red lights even because my face was getting worse. I was pulled over due to running a light and when the cops walked up to my window and saw my face, they said we will escort you to the E.R. By the time I got there, I was rushed in and admitted for 7 days. Following this, I was sent home with a pic line (a temporary permanent I.V. line, surgically placed) so I could then spend 8 weeks, three times a day, administering antibiotics and a weekly visit from the home health nurse.

This is the whole reason my vertigo began 8 years ago. Now, vertigo is chronic for me. Daily, I end up on the floor, vomit, and lay there for 3 hours only to spend the rest of the day losing my balance and dizzy. I am no longer able to go out to work due to me being a "risk" on the job because my severe vertigo. I am prisoner to my vertigo. I have hearing loss in the right ear and now I apparently have Menieres Disease. All I know is vertigo is the worst thing that ever happened to me. I hate it and there is nothing I can do about it yet.

There are many of us vertigo sufferers out there that cannot go out and work either. It is my dream to conceptualize a way for vertigo sufferers to make an income from home and at least not worry about the financial ruin not being able to work brings. I, myself, have an e-commerce store that has taken one year to begin to see profits. I want to think of a way to earn money sooner than one year. I am looking for other vertigo sufferers who would like to form a group to brainstorm this idea. I need help. I am a expert problem solver, and ENTP personality type. I just need others to help make this possible. Since we are stuck at home, lets put our heads together. If interested please leave a comment. Anything is possible. Lets do this. I hope others comment in interest. We can make this happen. Once a decision is made, there is nothing that will get in the way of that dream. Quote taken from the book by James Allen "When a Man Thinketh" One of the best books ever written. Audio of this book can be found on You Tube. If your stuck at home like me, maybe listen to this book. I look forward to comments below to brainstorm. Thank you,

Crysta Lee

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  • Posted

    Hi my name is Aga Richter. It’s very sad that you had to go through all of this and now you are still suffering on daily basis. I have a horror story of my own. It all started with dentist few years ago when I got crowns done on upper front teeth to have nice and even smile. In April this year a severe pain in my temple sent me to dentist who said I needed root canal. During a lengthy root canal procedure my jaw had locked open. Somehow I was able to maneuver it and close it back. By end of May I started getting dizzy not knowing why. In June the dizziness (not vertigo my is more off balance and fainting feeling which is the worst thing I have ever experienced) got so severe that I could not drive or work (had to go on STD). Other symptoms I had were: neck muscle tension, ear ringing, tinnitus, fuzzy vision, brain fog, numbness in right hand. I went to my primary doctor, PT for vestibular disorder, ENT and neurologist twice. I was 7 times in ER, admitted to hospital for observation for 2 nights and admitted to hospital for 3 nights. Had multiple MRIs, CT scans, blood work etc. all good. Nothing wrong. In August I started therapy for neck with cervical chiropractor 3x/week. This would help but then the symptoms would come back. Finally in end of August after reading lots of forums I thought about my jaw and scheduled appointment with TMJ specialist. According to radiology results from ct scan of my jaw my jaw has been pushed backwards due to bad dental work pressing and my ears, veins and nerves which could cause all of the symptoms. I started splint therapy on September 24th but results so far are not as good as I would wish. The dizziness still persists (6 months already) and now I think I will have to live with this till the end of my life. By the end of November I will have 2 more consultations with other TMJ specialists to get second opinions. If I will not be back to work by 12/26/18 I am going to lose my job and I will have to go on LTD which barely will cover my mortgage and cost of health insurance. I feel like in all of this doctors were not interested in treating my case, looked at me like I was crazy and never gave me a proper medications. My mom just sent me medication from Poland that is used for Meniere’s disease called Betaserc. This is not available in USA. I am praying that this will help me somehow to start functioning. I was wondering what medications you are taking. I have been taking Meclizine and muscle relaxants.

    Great idea to figure out some type of business that could be run from home since we are stuck. I will think about some options and let you know.

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    • Posted

      hi ladies

      both of you sound like me, especially you aga-even the numb hand. do either of you have access to an otolarngologist? i truly believe i am only recovering because of this type of doctor. the nuero said i was going to be disabled. the ENT said i was going outside her expertise. she referred me to the otolarngologist. just a suggestion. i know i was losing hope myself.

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  • Posted

    Hi, I wanted to give you an update on my situation. I am on week 9 of wearing splint and the symptoms improved but are still disabling me from normal living like driving car or working (dizziness, brain fog and neck muscle tension). I have seen today another TMJ specialist at University of Maryland dental school and was prescribed Norotriptiline since he thinks my nerves in face, neck and head are on fire. Like I developed some over sensitivity. This could have started because of the jaw issue but it’s a separate illness. Also he referred me to otolaryngologist at John Hopkins hospital which I am going to see next week. I will you give an update next week in case I find out something. Hope you all are doing well.

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    • Posted

      aga how are you doing on the norotriptiline? it has saved my life. i have a different diagnosis, vestibular migraines so its interesting you have also been prescribed this. i too am seeing an otolaryn doctor, i hope all goes well. im guessing dr will slowly increase meds for you. good luck

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    • Posted

      Hi hmoosey, I am close to being diagnosed with VM. I have to do balance testing next month to rule out vestibular damage. To add insult to injury, I am perimenopausal also...that is when the migraines kicked in, then the constant unbalanced, swaying feeling. Been dealing with it over a year. Been to countless drs and testing...all clear for the bad stuff,

      FINALLY...did my own research and Saw an otoneurologist at an eye ear hospital...he was great. He started me on nortriptyline last week to manage migraines. (was on amitriptyline 2 months prior which my primary dr gave me to help until I got in to see the otoneuro)

      I am encouraged to read that nortrip has helped you! How long would you say it took you to feel semi normal? I have to increase next week to 20mg. Then follow up with balance testing and otoneuro and go from there...he mentioned target dose is different for everyone.

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    • Posted

      hi lou

      same here, peri menopausal. my oto doctor said women experience this VM during this stage, all the hormone changes. i am on 40mg. i started at 10. i have to say i started to feel it very quivkly. it wiped out my brain fog almost immediately. i still have some issues, like motion sickness. i can drive no issues, but cant be a passenger. things like that. my doctor has me doing visual vertigo exercises on youtube now. i hate it. it is supposed to make me naseaus. trying to fix my brain with visual things. like i cant watch the ocean. mine also said everyone is different on how high the dose goes. i still have vibration in my ears. so im guessing he will go up to 50 next month. have you noticed anything positive yet? my doctor also has me taking 800 of magnesium. i have to say that it really helps prevent the migraines.

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    • Posted

      Hello! Same here...my head is clearer. Pressure only once in a while. The unbalanced feeling is awful. But I know it is just a feeling. But it is life altering. I too cannot watch moving things too long and get awful nausea as a passenger. Cannot go to movies or watch big screen tvs. I drive only when necessary, but when the car stops, I feel as if I am still moving. I have gone almost a week without a migraine attack. I take 250mg of magnesium. 200mg B2. Trying to work up to more magnesium...but it bugs my stomach. My ears are swooshing and blocked...get tinnitus all the time. I wear sunglasses and hat everywhere...my eyes are like I am wearing the wrong prescription!

      I am scheduled for balance testing next month. Did you do that? I am having the caloric test and rotary chair. Dr said that some people vomit...excellent! Going to start 20mg of nort in a few days. Nice chatting...perimenopause is the pits! My dr was really good and was not dismissive when we were talking about hormones. He asked if I wanted to participate in a study the hospital was doing. Unfortunately, I live too far...but it was nice to hear that there is more awareness.

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    • Posted

      hi lou,

      so interesting, you sound just like me. i have been on the meds since august. and every day i thsnk god, because i literally thought i was going to lose everything, including my life. you mention your eyes- fascinating, because my vision has plummeted and i really dont have night vision. my eyes wont adjust. i asked my doctor about it because it is in line with my illness and he said he doesnt believe its connected but i do. so my doctor did order those tests. the otolaryngologist, i will tell you its hell. and had i tried to do those test when i was at my worst, i wouldnt have made it through. the spinning in the chair in a booth in the dark, wild and awful. the filling your ears with warm water then cold nauseating. you need to do it. so its good its been ordered. it verified for my doctor that i had no nerve damage ect. it verified what we really already knew that i had been misdiagnosed 2x and the 3rd diagnosis of vestibular migraines is accurate. you cant take a zofran or mecclizine prior to the testing. i brought it with me to take immediately when it was over. i rebounded very quick. in the summer i would have been in the hospital. i did notice the next day, tripping over my feet, my tongue thick, so lingering symptoms. you will be ok, youve experienced worse with this dreadful illness. peri menopause-its been happening for years now, but this... i thought i was a dead woman. my dr. said that once you hit actual menopause he sees women level out with this. i am hoping when i go up to 50 that the vibration/ringing starts to go away. im very tired of listening to it and it wakes me up. my doctor has me on 800 magnesium. hmm. i kinda thought the norotriptiline was the stomach botherer, i wonder if its the magnesium. i will deal with it to have my brain back and be normal. good luck with the testing, you will make it thru. i did say to the guy who did the test, that i never would have made it 5 minutes when i was in the middle of this illness. he said a lot of people have to come back.

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    • Posted

      Hi hmoosey! thank you so much for responding. I have terrible night vision, (bad eyesight anyways)...but I stumble all over getting to the bathroom in the middle of the night. I had read that with VM, our brain cannot rely on our ears to keep balance...so it compensates by using our eyes. If I close my eyes, lift a leg to balance, I will fall. Open eyes, not bad. Perimeno screws with our eyes too...I am on the menopause forum too and it is a subject that often comes up. I am either dry, teary, blurry. Hard to focus while driving...I have an hour round trip picking up my child from school and I practically kiss the ground when I make it.

      Cannot wait to get the testing over with. I live outside the city...I booked a room close to the hospital. My testing is at 8am. Then, I see the dr after the test. Just glad there are no restrictions on taking nortripyline...a lot of places say you cannot 48 hrs prior. Meclizine has always made me worse...so fatigued. BUT, I will bring some anti nausea with me for the ride home. I assume I will be whirling. hopefully, I do not get hit with a migraine that day. I am still going...they can wheelchair me in and out if need be!

      I hope this is the answer...I too have been misdiagnosed. Wasting a year of drs, tests, ER visits, and feeling sicker. Was told...Anxiety, depression, BPPV. My former primary told me last year she "was convinced" I had MS...that was an anxiety filled 3 months of testing. I dumped her right after.

      Good luck getting up to 50mg...I am starting 20 tomorrow. Magnesium makes my stomach funny...weird because nortrip makes me constipated...cannot win. Nice chatting! Stay well!

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    • Posted

      good luck lou. i was allowed to take my norotriptiline. im so glad you mentioned the eyes. i have to feel the walls at night. night vision has left me. i dont know if its ever coming back. driving after day lights saving time was scary. i somehow am used to it. but in my house im bumping into everything in the dark. and yes, even though i am so much better, i cant lift my leg ect. no balance still. you will be ok with the test. its awful because they do expect you to get naseaus. let me know how you do. it was a form of torture. no way could i have done it when i was misdiagnosed. they will know after that its definite VM which you already seem to know. or if its a combination. this illness is hell.

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    • Posted

      Thanks! I will let you know...I go after new years. I forgot about another mis diagnosis I had...POTS. I had a dr tell me that. Told me to drink lots of salt water. Thank goodness I did not listen to her....Salt is horrible for migraines and very disruptive to the inner ear!

      I am upping the nort to 20 tonight...fingers and toes crossed! Take good care!

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    • Posted

      i had my primary say maybe MS to me because my hand was numb for months. i didnt believe it didnt think she had a clue, and i was right. the numb hand was the aura. and yes, salt thats stupid. its pretty scary that these medical people know nothing about this, we have to disgnose ourselves if we want our life back. you will make it. just keep track of any positive changes from the norotriptiline.

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  • Posted

    I have been taking Nort 10mg for 12 days now. I do not have any side effects yet. First couple of days I was more dizzy in the mornings but it went away. There is definitely improvement in my dizziness and balance but my muscles are still tense. Doctor wanted me to increase it to 20mg after week but I will increase it after 2 weeks. I have seen otoneurologist on Friday at John Hopkins and have been referred to Neurology department. They seem to think my issue is strictly neurological like brain damage or MS since I have constant muscle spasms in my neck and can’t even sit straight. Hopefully I can get to see neurologist soon.

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    • Posted

      Hi Aga, I am upping my nortriptyline to 20 mg tomorrow. I was cleared last year for MS...My neck is a mess too...especially when a migraine hits. Pending balance testing, they are leaning towards vestibular migraine for me. If you had an MRI already...wouldn't that rule out MS...

      These drs run us ragged...I hope you find some answers and relief soon.

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    • Posted

      Hi lou42662, I increased Nort to 20mg 2 days ago and felt very dizzy yesterday and today. Hopefully tomorrow will be better. I had multiple MRIs and CT Scans taken of brain and neck. All good. I think that doctors do not know what is going on with me and just shooting in the wind. I did not ask anyone about MS so not sure if scans I took were specifically enough to evaluate for MS. I hope to get some answers soon.

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    • Posted

      Hi aga, if you had a brain MRI...they would have noted lesions and that is usually an indicator of MS. I ended up being cleared from a neurologist last year. Then, a month later I got a sudden ripping headache and started vomiting...went to ER, got a lumbar puncture checking for other things...clear...told I had a sinus infection, which I now realize was migraines all along. Lumbar puncture is usually another test they order for MS...it is painful and I hope they do not put you through it.

      When I saw the otoneuro last month I brought up the subject and he was not concerned at all since brain scan was clear.

      I will keep my fingers crossed for you...

      I hope your dizzies subsided a bit...I start 20 tonight...I am sure I will be dizzier too. Stay strong!

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