Similar symptoms - suggestions?

Ears, nose and throat
1

Hello,

My current symptoms came on a couple weeks after a mild 2-day bout with stomach flu. On 12/31/17 I woke up with severe nausea (no vomiting and have never vomited), diarrhea, vision problems (difficulty focusing, blurred vision, seems like objects are pulsing), dizziness, inability to sleep, and brain fog.  

In the past 7 months I've lost 35 lbs and am quite debilitated. Currently I have the horrid nausea, dizziness, feeling like Things move when I look around, sometimes I need to hold on to someone when I walk,  or stare directly down to walk, Pulsing vision, difficulty focusing vision, feeling like I am in a dream, Foggy brain,  difficulty reading, stores or places w lots to look at make me feel awful, pressure behind my eyes, ear fullness and just recently, ear pain. I can have some good days but mostly very difficult to manage days. 

I've had something similar occur twice before. Once at age 11 (1988) and again at 21 (1998). Since my biggest concern was the nausea I always went the gastroenterology route and Neither time were the doctors able to diagnose anything. In 1988 after several months with no treatment or answers it slowly resolved on its own and I was symptom free until it came back in 1998. I had to take a semester off college because I couldn't function. After months of suffering and probably as a last resort my PCP threw out the term "IBS" and gave me a rx for Paxil which seemed to alleviate everything and again my symptoms subsided. 

Fast forward 20 years and here I am again. This time, I cut straight to the chase and in Jan. went right on Paxil since it seemed to have helped in 98. I thought - maybe this is just all in my head as I had been told Previously. The Paxil did not go well. It made me extremely agitated, made my dizziness so bad I couldn't drive and made my nausea worse. After 1.5 months on Paxil I cross-titrated onto Prozac. Along with all the bad side effects from Paxil, after 2 weeks on Prozac I was having suicidal thoughts which I had never had before. So I stopped that and decided psychotropic drugs are not the answer for whatever is going on with me. I should note, I had been given temazapam and Ativan to sleep and both were horrible for me.

I saw an endocrinologist and standard hormones were normal. 

I was trying to avoid the Doctor rabbit hole route since it had been fruitless the last 2 times but I now realize I DO have something. This isn't all in my head. This isn't normal and I need to get to the bottom of this.

I saw a neurologist 2 weeks ago and she's requested an MRI and prescribed VRT (1st consultation is 7/24). She also referred me to opthamology. She made no mention of labyrinthitis or VN - it was actually my mom who suggested it which led me here. 

I have an appt w an ENT on Monday and thanks to this forum made an appt w a neurotologist but that's not until 9/10. 

Long story. Thank you for listening and if you have any similarities to my story I'd really love to hear. Before this struck me I was a very healthy and active mother of 2 young boys. With every ok day I get my hopes up only to be crushed by the awful days that ensue. 

2

It could be many things , from my experiences I believe there could be a problem with your ears and all is aggravated with anxiety , did doctors ever found your ear drum damaged ? Are you a swimmer ? Do you drink alcohol ? Alcohol use creates vitamin/minerals deficiencies that affects everything including ears , I have Meniere disease occasionally so I learned a lot about ears.

Hope you sort it out

3

Thanks for your reply. I am going to see an ent on Monday and have an appt w a neurotologist to go through all the dizzy tested in sept. (Earliest available). I'm still awaiting my appt for the MRI as I know the neurotologist needs that as well as the evaluation from the vrt therapist (that's on 7/24). 

I don't drink And all my vitamins levels have come back in normal range other than a slight deficiency in vit D which I am taking supplements for. 

4

Thanks for your reply. I am going to see an ent on Monday and have an appt w a neurotologist to go through all the dizzy tested in sept. (Earliest available). I'm still awaiting my appt for the MRI as I know the neurotologist needs that as well as the evaluation from the vrt therapist (that's on 7/24). 

I don't drink And all my vitamins levels have come back in normal range other than a slight deficiency in vit D which I am taking supplements for. 

5

Hi Nat

I'm so sad your having a bad time. I've got something similar. I've had dizzy spells full ears and tinnitus for 5 months. Last week I had a stomach bug and it's made all my symptoms worse along with the anxiety which is normally controlled with medication. This is a horrible illness and doctors don't know how to deal with us all so just send us off with various tablets. Before my stomach bug I was on betahistine 3 times a day which helped with the swaying but stopted for a bit when I had the stomach bug.

I hope you get some answers soon. I have ENT appt next week so I'm hoping for a proper diagnosis.

Most doctors put everything down to anxiety but until I had Ear troubles I was perfectly fine.

Helen.

6

Hi Helen,

That's so frustrating. I also don't suffer from anxiety. Not knowing what is wrong with me and why I feel so ill makes me scared and anxious. 

I'm very clear when I speak to drs to avoid words like "anxious" or "depressed" because I know they like to chalk everything up to that. Before this illness befell me I was super active and very happy with life. So no, I'm not depressed or anxious. 

You can't make up tinnitus or dizziness. Those are real symptoms not imagined.

Please let me know what your ent says. I see mine on Monday. I don't expect too many answers as drs all love their diagnostic testing first. 

Yesterday I did have a SIBO breath test my gastroenterologist ordered  and the results were positive for small intestine bacterial overgrowth. I see the gi at the end of the month but I really don't believe the sibo is the cause of all my current issues. It's probably something I've had for a long time and is now concurrent with whatever is going on causing the nausea/dizzy nightmare. 

7

Nat

You sound like your going down the right route. Sometimes even ENT consultants find nothing but the ear is a complex structure and symptoms obviously come and go. As I live on an island our health care is appalling as we have 1 hospital and a big population. I had to borrow money to get a private ENT appt otherwise I would have to wait til November. I have pressure behind my eyes too which an optician found and referred me to the hospital but my appt for that is September. Unless your crawling on hands and knees dying or can afford private health care they just let you suffer. It's already cost me my job and we had to sell our house as we couldn't afford to keep it up with just my partners wage coming in. This illness has a massive knock on effect on our lives it amazes me that there is not more research done.

I will let you know how things go with ENT and vice versa.

Be strong

Helen

8

Oh no! I'm so sorry to hear this is such a financial burden. I'm in the US so we have privatized healthcare. I know in the U.K.  You have nationalized healthcare but wait many months to see specialists. That's just awful. 

The neurologist I saw did refer me to a neuro-opthamologist but I don't see him until September which is frustrating. And I'll be seeing a neuro-otologist but not until sept either. 

I'll update you Monday.