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Doctors, Specialists, anyone, a plea for help for my sister

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12 March 2001
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My sister is 40 years old and has something going on. Can anyone help or point us in the right direction. Here is a quick snap shot she typed up. She is a Speech pathologist graduated Cornell with a perfect GPA. Please anything to help is appreciated. If a doctor here thinks they can help I will make sure she gets to your office ASAP.

First attack June 3- Rolled over in bed and felt like I was falling out of bed but wasn't. For several days, I was VERY dizzy all day and night. In 4 days I was still dizzy, but decided to go back to work. I was not BETTER.. It was very hard to work. But over a period of 2 months, and many Dr appointments it slowly got better. Vertigo at night, dizzy during the day and feeling better as the day went on. Saw primary doctor who thought it might be viral, saw ENT who said Benign Positional vertigo. Saw Audiologist and they determined a mild hearing loss. NEVER really went away because at night I would get woozy but most of the summer was almost normal. I tried steroids, they gave me Meclazine that made me so tired that I couldn't take it. Nothing really helped. My primary doctor put me on antibiotics. The ENT gave me exercises to do at home, I feel that did NOTHING but time helped. I also have to sleep sitting up because lying down at night is miserable.

Second bad attack October 18. Two weeks prior to this I had PAIN in my ears and thought I might have an ear infection, so I saw my primary doctor who said my ears were fine and diagnosed Eustachian tube dysfunction. Oct 15th I had some mild vertigo at work.. the room spun one time. So I knew it was coming. Oct 18th, I rolled over in bed and the whole thing started again- And again the worst of it was the first 4 days. But this time I took the steroid pack and got right back to ENT. Then he talked about Menieres. Gave me no medicine. Scheduled me for an ENG test, and ct scan. I also happened to have an appointment with my primary doctor, and she gave me Valium - 2 mgs which were mildly helpful.

I had the ct scan, and then the ENG and another hearing test. The hearing test was unchanged. The day after the ENG test I was extremely dizzy and did one set of my BPPV exercises, that set the room spinning and then I couldn't move my head off the pillow because one cm move made the room spin. This was the worst day I have ever had. My sister came up and called the ENT and they phoned in a prescription for Transderm Scop, but this was not much relief.(not immediately). I went back to ENT 2 days after the ENG test, walking with a cane because everything was spinning. I had to sleep for a week leaning forward on a pile of pillows. He scheduled an MRI, which I did. I also got stronger Valium. The next visit I had with the ENT he told me that the ENG test came back normal, the Ct scan of my brain was normal, and the MRI of brain and ears was normal. He said I did not fit anything as far as a diagnosis and he had done everything that he could do for me and he referred me to another ENT in Syracuse, which was over a month wait.

So I was living on Transderm scop patch (to which I have many side effects) and I woke up one day and couldn't see anything close up and my pupils were extremely dilated so they sent me to an ophthalmologist. The ophthalmologist said this was a reaction to the socpalamine patch. It also gives me a burning bright red itchy rash, and sometimes my pupils are unequally dilated, and VERY dry mouth. The ENT also put me on a diuretic which also dries you out. So I called the ENT and said how uncomfortable the side effects of the patch were, and the nurse called back and said to take meclazine and benadryl for the itching. They already KNEW that the meclazine wipes me out, and doesn't help me. but they didn't take the time to look at my chart apparently. I also tried a low salt (under 1000mgs) diet for 3 weeks which did nothing.

So I just had my appointment with the ENT in Syracuse, who had requested blood test for 8 different disorders and everything came back normal. He reviewed MRI and Ct scan, ENG test, and all he papers from the referring ENT. I had another hearing test, which came back unchanged. This ENT put me through some balance tests and prescribed vestibular rehabilitation therapy that they have not scheduled yet. He also said that he thinks my vertigo is related to my history of migraines, and that he is not the one to treat me, that I have to go see a neurologist. and now I cant get into him until another month. He also said to try and get off the patch. And he feels that perhaps the hearing loss is NOT related to the vertigo, that perhaps there was a mild hearing loss prior to the vertigo and Not associated to it.

In the meantime, I took the patch off, and the vertigo was HORRIBLE, so I put it back on. I can not live without it. My vertigo is NOT getting any better. When I close my eyes at night the room starts moving. However, I typically can sleep, believe it or not, for a few hours. I sleep at 90 degrees. The vertigo wakes me up at night.. and then at 5am every morning.. I have this HORRIBLE feeling like I am headed down a roller coaster, when your stomach creeps up in your throat. I do NOT sleep with my head to the side. I do NOT move it that way when I sleep, because that causes me to spin. When I get up in the morning, I sit on the side of the bed for 10 minutes. Then I have to move around before I start feeling better and typically I have HORRIBLE balance for about 15 minutes. In about 2 hours of being up I am feeling better- not normal- but good enough to function.

The ENT in Syracuse did NOT diagnose Migraine associated Vertigo. He just suggested it.
The only relief I have is this Patch (and I deal with those side effects) and sometimes a Valium if I get this agitated feeling, where I feel that a vertigo spell may be coming.

I have constant feeling of pressure, pain or itching in my ears. I have constant ringing. Also, I have bouts of louder ringing. This is in BOTH ears.

So thats my life. I hate it. I need someone to help. After so many Dr. appointments and tests, and nobody has done anything to help, or even diagnose what is going on with me.
My husband is in Law enforcement and is currently on assignment away from home for the next several months. We have 2 small children that I am taking care of on my own.

Does anyone out there have any advice

Ianthe
 
November 28, 2010 I had my first attack when I tried to get out of bed. Everything started to spin. I could not do anything for about 3 day due to the dizziness and nauseous. I saw an ENT and I was diagnosed BPPV and she did the Epley Manoeuvre, made the Big Spins came back durring the exercise. I had sleep with my head elevated for a few days. I would still get dizzy and nauseous driving and looking up or down.

After Christmas I was helping a friend to install a trailer hitch on his truck and then suddenly I had my second attack, every started to spin again. I crawed in to the house from the gargage and sat on the couch. Belive it or not I was watching Youtube and I did the Epley Manoeuvre myself. I made a appiontment with for vestibular rehabilitation therapy (VRT) about 2 weeks later.

At the VRT I was nervous about them doing maneuvers to make the Big Spins come back. But no spins, the Epley Manoeuvre is did myself worked. The VRT is working with my balance and my dizziness. I am about 90% now.

I also found some good info here http://thedizzylounge.com/thedizzy_forum/forumdisplay.php?f=10

Good Luck.
 
Since she does not have any central signs such as diplopia or ataxia, this does not look anything in the brain. The fact that she had a negative MRI. MS is also less likely. docjohn should chime in on that one.
From her symptoms, they sound very suspicious of Meniere's or certainly some form of recurrent labyrinthitis. Unfortunately, these are clinical diagnoses and there are no tests to confirm. I hope she feels better soon.
Steve
 
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problems with the inner ear structures can be a challenge.We are talking about tiny structures encased in bone.MRI and CT scans can only resolve these structures on the macroscopic level.Her problem is on the microscopic level.It is good that she has negative tests,but menniers' disease and that class of vestibular abnormalities can be very fustrating to treat.Once the proper diagnosis is made she may benefit from seeing an expert on that particular problem,such as at Cornell in the city....ect.....good luck.
 
Wow...I suffered with all the same symptoms in the spring of 2010(no vertigo but the ear pressure, constant ear ringing, and constant crushing head pressure). I was like a man possesed to find an answer. I went the whole route also...Primary care Dr, a number of ENTs, MRI's, Cat scans, nothing came up and nothing helped. The Dr's basically came up with nothing. The ear pressure and ringing was driving me so nuts that I wasn't sleeping which only made it worse and my anixety level was through the roof. I actually lost 23 lbs in 3 weeks from the stress of it. Like I said I was willing to try anything... I did 2 things....recommended by a friend I went to an acupuncturist (and a good one)the aggressive acupuncture treatment actually started to help(I was going every other day for 4 weeks straight)it was costing me a pretty penny but I didn't care I was suffering. The 2nd thing I did was see a psychiatrist for the anixety and stress. He put me on an anti depressant to relieve some of the mental strain. The treaments together started to work. I would say within 4-6 weeks I was 95% better. The ear pressure started to subside, the ear pain was gone and the volume of the ringing came way down. I still have the ringing(its tinnitus) but the volume is now manageable and I don't even pay attention to it(it will probably never go away). I now don't need any treatment(I'm not 100% but I can deal with the residual effects). My next stop would have been this place. He is the link if you want to check out. http://www.headaches.com/ I didnt go but heard alot of good things...Good Luck my prayers are with her.
 
My mother had dizziness, slow motor response, headaches, ear ringing and nausea that continually got worse over 2 years, some days were better than others. She had every test available from ENT's, Neurologists, balance specialists, etc. She was diagnosed, after 2 years of suffering, with PSP (Progressive Supranuclear Palsy), a rare disease that restricts the brain stem and is very hard to diagnose. Your symptoms aren't exactly like hers but PSP symptoms are varied by the progression of the disease. I sincerely hope you get well soon!
 
Since she does not have any central signs such as diplopia or ataxia, this does not look anything in the brain. The fact that she had a negative MRI. MS is also less likely. docjohn should chime in on that one.
From her symptoms, they sound very suspicious of Meniere's or certainly some form of recurrent labyrinthitis. Unfortunately, these are clinical diagnoses and there are no tests to confirm. I hope she feels better soon.
Steve

They have ruled out menieres because it is not fitting a pattern of having attacks and getting better. It is constant. I am sorry to hear about your stories of vertigo. I would wish this on no one. I will look up Progressive Supranuclear Palsy as I have not heard of that yet.
 
My wife had nearly the same symptoms. It seemed to happen during the spring and fall. Perhaps extra mold in the air. She would get these attacks that would come on in a few minutes and she could NOT STAND UP OR WALK.

I would have to race to where she was and carry her to the car. It was diagnosed as Meniere's Disease.

I just spoke with my wife and she said it was allergy related and a steroid shot helped ALOT. Also if she felt an attack come on, she would take Meclizine 25mg tablet and it would avert the attack.

Good luck and don't rule out Menier's disease. Also did you travel for Christmas? Did it make a difference? Did you recently begin working in a new building or move into an apartment. Mold can be a culprit. God Bless!

I'm not a doctor but everyone in my family besides me is.
 
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note from my sister


I had a CT with contrast of brain to rule out tumors. Then i had an MRI- they did the inner ear including semi circular canals. I have the MRI disc right here and you can see the canals in the photos. There was nothing abnormal. They have ruled out MS based on "normal" findings from the ENG test. Lyme disease was ruled out - they did a blood test and ruled out that plus luekemia, and several other rare causes including Lupis, there were some other things as well... I didnt keep the bood draw slip. No one has addresed any vascular issues, and I have not had MRA test. My next visit is with a neurologist and they cant fit me in until february. Stress and no sleep are definately making it worse, and I cant get sleep because that is when my symptoms bother me the most.

I WAKE UP EVERY MORNING ON A ROLLER COASTER... falling down that big hill, but it never stops and my stomach goes up into my throat and I just lay there, saying dear god please help me get through this. I have so much anxiety and I am starting to get depressed because of this and I cry almost every day and I really just cant stand it any more. I have to wait a WHOLE MONTH to see the neurologist. I have been like this since October 18th.

Oh and I have 2 new symptoms... I have had on and off for short periods of time a metallic echo in my right ear. Also I had a bloody nose today. I dont ever remember getting a bloody nose ever in my life
 
My wife had nearly the same symptoms. It seemed to happen during the spring and fall. Perhaps extra mold in the air. She would get these attacks that would come on in a few minutes and she could NOT STAND UP OR WALK.

I would have to race to where she was and carry her to the car. It was diagnosed as Meniere's Disease.

I just spoke with my wife and she said it was allergy related and a steroid shot helped ALOT. Also if she felt an attack come on, she would take Meclizine 25mg tablet and it would avert the attack.

Good luck and don't rule out Menier's disease.

My wife has this also.

How did they determine it was allergy related? Where did they give her the Cortizone shot? What symptoms did the shot take away?

Thanks
 
Steve, my brother-in-law Larry Malerba is a homoepathic D.O. Very well-known in his field (has a blog on huffingtonpost.com and has a book out) and has been known to help when conventional wisdom fails. Might be worth a try - his office is in Guilderland, about 20 min from the capitol. http://www.docmalerba.com
 
I was going to guess meniere's or atypical migraine vs. viral labyrynthine inflammation.

The low sodium diet would be a way to treat meniere's. Maybe 3 weeks is not enough of a low sodium diet. I don't treat it, so i don't know what the time frame is.

Does her migraine medicine help?

I'd stay away from the "mold specialists." Unless they are here offering a money back guarantee.
 
Steve make sure the mri was performed with technique specificly to look for a vestibular schwannoma, esp since she is now complaning of ringing in the ear.These tumors can be very small.
 
I hope she figures out what is wrong and gets well soon.

If things don't improve, maybe consider contacting the producers of Mystery Diagnosis and see if they can refer health care providers who can help look into this. Mystery Diagnosis highlight mysterious cases that take very specialized and dogged healthcare providers to play detective and figure things out.
 
I forwarded all the posts to my sister and I will get her to respond. Honestly I have not had the time to even read the posts which I am going to do now. My mothers furnace broke and I have spent the last two days installing a new one for her. Since my mother lives on 17k a year and won't except any help from me in the form of money I wanted to help her by installing the furnace. My sister will answer all posts by the end of the day. Crazy busy here. Thanks to all of you for the help and keep it coming.
 
My wife had nearly the same symptoms. It seemed to happen during the spring and fall. Perhaps extra mold in the air. She would get these attacks that would come on in a few minutes and she could NOT STAND UP OR WALK.

I would have to race to where she was and carry her to the car. It was diagnosed as Meniere's Disease.

I just spoke with my wife and she said it was allergy related and a steroid shot helped ALOT. Also if she felt an attack come on, she would take Meclizine 25mg tablet and it would avert the attack.

Good luck and don't rule out Menier's disease. Also did you travel for Christmas? Did it make a difference? Did you recently begin working in a new building or move into an apartment. Mold can be a culprit. God Bless!

I'm not a doctor but everyone in my family besides me is.

Hi.. thanks for info. I did not travel over Christmas or make any other changes. I can not take Meclazine (Antivert) because all it does is knock me out. I cant function. So they have me on a Scolpalomine patch which is similar but I dont fall asleep. I have seen 2 ENTs and they both said NOT Menieres. Neither has offered a diagnosis,but both have ruled that out. I also took steriods but that didnt make any difference.
 
This is a bit out of my field but I will try...

What is the diagnosis? It sounds to me like BPPV. In that case, doing excercises on your own isn't the solution. Go see a TRAINED Physical Therapist or a TRAINED D.C. and ask them to do the Epley's maneuver with CLOSE follow up. Our P.T. puts the patient in a brace part time and puts the patient very very strict limitations. We usually have great outcomes.
 
This is probably going to be way, way off base, but has she ever had any problems with her jaw, esp. with Temporomandibular Joint Disorder?
 
This is a bit out of my field but I will try...

What is the diagnosis? It sounds to me like BPPV. In that case, doing excercises on your own isn't the solution. Go see a TRAINED Physical Therapist or a TRAINED D.C. and ask them to do the Epley's maneuver with CLOSE follow up. Our P.T. puts the patient in a brace part time and puts the patient very very strict limitations. We usually have great outcomes.

I have seen two ENTs and they wont do the procedure. Both told me that because they could not determine which ear- because it is bilateral- that they can not do that.

I dont have a diagnosis. But two ENTs have ruled out BPPV. One has ordered PT for Vestibular Rehab therapy but they dont want me to start it until I see the neurologist.

I really appreciate your kind attention and thought about my situation. Right now for some reason it is really bad again and I havent really slept in 3 nights becuase it has been so bad.. I am just barely able to function today.
 
have never had TMJ.. but it is relavant that my mother has?

TMJ disorder can be hereditary. Or it can be caused by bruxism, trauma, and even stress.

Everyone has a TMJ. It is your Temporomandibular Joint. The actual TMJ Disorder (TMD) is associated with difficultly opening, sore muscles of mastication, jaw and tooth pain. Other symptoms include ringing in the ears, dizziness (not the spinning kind though), fullness in the ears, and frequent headaches/migraines.

Again, it may be totally off base, but something to check for.
 
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