What is this??

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Thank you for taking the time to read this in advance.

I had been hoarse for 3 months and it started to worry me, no pain, but just raspy.

I went to an ENT and he diagnosed me with GERD. (i don't have chest pain or heart burn)

i started taking omeprazole and went on a non acid diet.

7 days later i had my first major episode

i was at work helping customers (i am a barista) and i felt my body go a bit numb and i got warm so i crouched down to drink water. I went to my boss and asked if i could sit down after i helped the customers and he told me i had no color in my skin and my lips were yellow, so to go now.

I talked to him explaining the drinks i had and i went completely blind. (not sure if it was gradual or all at once, but i was unable to see anything) the episode lasted about 7 minutes total

i thought it was a reaction to the medication, but it has been two months and i have an extreme pressure in my head ever since that day.

I have had other episodes since that day which seemed to be minor compared to the first one.

I have been misdiagnosed with GERD, pituitary etiology, POTS, Migraines, Headaches, Panic attacks, anxiety (my second episode happened after i had gotten out of a bath so these didn't make sense), fainting, sinus tachycardia, munchausens, sinusitis (i have had sinus pains), and many others

I have had

Dental X-rays : clear

MRI :clear

EEG (which is today)

CT scan : clear

Holter monitor (my heart rate went up to 165 during my most recent episode while driving) : not sure yet of results

EKG : normal

I have never smoked, i have never drank alcohol in my life either. I am an unusually healthy eater, i don't really work out though.

i am 5'8, 126 pounds, 19years. vitals are good.

my main symptoms are :

-head pressure (mostly around my sinuses)

-confusion and slurred speech comes and goes ( if i pause in a conversation my memory goes blank and i cannot restart again, even if someone reminds me of what we were talking about i can't get back

-i have a bad habit of staring at things, i am fully concious, but i can't take my eyes away

-fatigue and extreme exhaustion

-insomnia

-extreme weakness

-ear pain (i've been to urgent care and she told me i had fluid behind my ears)

-muscle spasms or tremors

-numbness in parts of body randomly

-depression (because of not finding answers)

-joint pain

-i can hear my heartbeat always (might be because of fluid in ears but it keeps me up at night)

-constantly feeling dehydrated but drinking over half my weight in oz a day

-hoarseness, lump in throat (checked last night and one of my tonsils is slightly bigger than the other; nothing too different, this has just appeared within the last couple days)

a doctor suggested i should look into lyme, hormones and allergies.

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16 Replies

  • Posted

    Definitely could be Lyme. I had most of those symptoms before I got diagnosed. Go get a bloodtest. You want a Western Blot test. See what that says. The problem with Lyme is all those symptoms could be due to something else as well. Lyme is called the great imitator for a reason. Could also be Babesios. Which I think was my main issue.
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  • Posted

    Hi Brianne,

    I would definitely ask to be tested for Lyme.  I can relate to abosulutely everything you've expereinced and so much more.  You should read my post... I didn't mention in it that I too was diagnosed with GERD about four years ago and was just recently on medication for a flare up which I did not know was even active.  The medication did not work and I now understand that it's more Lyme related than a gastro issue.  I've also had three unexplained Grand Mal seizures in the last twelve years. EEG - clear.

    I tested negative twice in Canada for Lyme but have been sick and searching for answers for twelve years as NOTHING made sense.  As of July 14, 2017 I now have my answer - I do have Lyme and always have.  It was missed in the acute phase and testing in Canada is not sensitive enough to pick it up years later.  The journey has been long and it will continue but through our shared experineces - we must remain hopeful and not give up.

    Message me if more questions.  Good luck.

    G1975

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    • Posted

      I will definitely ask to take some tests, i still have more appointments with another ENT, because the fluid in my ear is crazy, a neurologist, and i have an allergist test coming up in late august.

      Did you ever have problems of feeling very calm but your heart would start racing out of no where? this happens to me very often, it's definitely not anxiety or panic attack related because i am in a calm state.

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    • Posted

      Yes, I definitely did experience this also and still do. Random and not mood related.  My heart rate is actually extremly slow with many side effects because of it.  However, I do expereince bouts of rapid heart rate, thumping in my chest and I can feel it in my throat, my heart rate is quite irregular.  These are very common symptoms with lyme sufferers.
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    • Posted

      I used to wake up in the middle of the night like this.

      The problem with these symptoms is the dcos say oh that can be anything. Not just Lyme. But, I was my blood work first time came positive on the Western blot and antibodies. I absolutely had lyme.

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    • Posted

      I haven't worked out in maybe 4 years but i am really slim and tone (which i don't understand) so i would go upstairs and i could be up there for an hour and my heart was still beating hard like i ran up the stairs. i thought it was because of how inactive i was but i was driving to the doctors and my heart started racing (my bpm is 63 and when i got to the hospital it was at 165) so they told me i wasn't allowed to drive anymore and thought it was heart related, so i just ended those tests.

      one of my tonsils is swollen and it feels like i have a swollen throat or lump in throat. i saw an ENT back in may and he just said my vocal chords were irritated and threw a disease at me. so i'm going back just to make sure everything is good.

      did you guys have up and down days or just straight down?

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    • Posted

      A roller coaster of ups and downs. No one day is ever the same - never has been.  This is common with late stage lyme.  My good days I cherish and I work through the tough ones.
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    • Posted

      did you have triggers? i feel like certain things make times unbearable.

      showers (i actually avoid showering haha it's mainly after showing or taking a bath)

      being in a car

      immunity boosters

      i'm hypersensitive to any and all scents too

      which is really bothersome

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    • Posted

      Loud noises. Slamming doors. I used to jump of my skin. Has been getting better. My sleep problems are the worst. The rest I can accept. I wake up a lot and sometimes I hear a door slamming in my sleep. Right when I drift off. Deep sleep is hard to achieve. Sometimes I would wake up gasping for air. That stopped. I am 5'7", 156 lbs, 30 inch waist. Not overweight. Lift weights three days a week, yoga twice a week.

      In the beginning before being diagnosed and treated I would have sleep paralysis.

      I get to sleep now and my dreams are longer. Things slowly seem to improve over mos. But is slow. Aug will 6 mos. since finishing 28 days of Doxy.

      Lastly, if I drink alcohol I am dead the next day. My head throbs. This is not a normal hangover. This tells me I have lingering inflammation. Possibly a lingering infection, but the doc says no. Retested for Lyme and the results said no more infection.

      I am very hestitant to go to a Lyme Literate Doc. Very expensive, not covered by insurance. So I continue to wait it out. Hoping my sleep improves just a bit more. The rest I can tolerate.

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    • Posted

      i am sensitive to sounds too, i bought ear plugs, which do help but yawning helps me release head pressure so i can't wear them as much as i want.

      thank you guys so much for replying and telling me your side of things. it is very much appreciated. i just want to figure this thing out but i don't want to overlook ANYTHING. so i have a couple more appointments to finish out and if that doesn't make sense i will definitely do to an infectious disease doc or ask my primary for a lyme test. i am just scared of testing negative if it is actually positive. very exhausting i commend you guys

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    • Posted

      my heart tests just came back abnormal. so i was referred to a cardiologist. i'm just really tired of all of this. i have an appointment with my primary doctor tomorrow and i'm going to ask to be tested for lyme. i also have my ent appointment tomorrow, because of my hoarseness and swollen tonsil. very very very tired of seeing doctors

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    • Posted

      So sorry you are going through this, your journey through doctor after doctor is familiar to most lyme sufferers. I have probably had lyme 20 years, but had three different lyme tests come back negative so got a fibromyalgia diagnosis. I finally saw a lyme literate doctor who diagnosed by symptoms rather than testing.

      I have bern on various antibiotics for months and also Vital Plan herbal treatment, but continue to ferl worse than ever.

      Curious to sed what the cardiologist has to say about your heart, palpitations and heart block are common with lyme patients,

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    • Posted

      The whole cliché 'i would never want anyone to go through this' is so true for what i'm going through. 

      i have been diagnosed with Sinus Tachycardia which is not fun and very scary at times because i can be completely calm and feel like i'm having a heart attack. I'm assuming the cardiologist with put me on heart meds. 

      I go get allergy and blood tests for lyme and myalgia done on the 24th so i'll probably get results back mid september. 

      Everyone talks about how common co-infections are and how you have to treat both, do you think it's possible you have a co infection of some kind?

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    • Posted

      I have up and down days and also up and down hours. I can be sitting around feeling pretty good when out of nowhere it is like a switch being thrown and I feel terrible. Nausea, pounding heart, stabbing pains in back and jaw joint (like TMJ), and complete bad body aches like a severe case of the flu. It can last a few hours or a few days, intrestingly I sometimes feel a little better if I eat something.

      Hope you have some tollerable days to go with the bad ones.

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    • Posted

      i am the exact same way!! my flu symptoms are more like allergy symptoms though. with so many people telling me it's all in my head on the hours or days that i do feel okay i question if i am sick at all, and then it will hit me, and everything starts all over again. my symptoms change every month i've noticed. I have been writing down all of my symptoms every day since june 23rd since it's hard for me to remember things sometimes. 

      the only physical appearance is that i look tired sometimes, so people are not as patient with me as i would like for them to be. just apart of the journey though. 

      even if I don't have lyme, i'm glad you all understand where i'm coming from

      my doctors obviously think it's a possibility since she figured it would be good for me to have a western blot 

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    • Posted

      Just a little update, My EEG results came back normal (no surprise) neurologist told me if i have any more 'migraines' we could start clinical trails for migraines... haha... what? 

      i have an allergist appointment on the 24th and the same day they are going to do a western blot for lyme and test me for different types of myalgias 

      stay tuned 

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