Masto and Meniere's

• By SueWNM
• Reply 3759199
• January 31, 2013 at 10:07 am
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I was diagnose with SM a year ago and all of sudden started having a roaring in my right ear with severe hearing loss. After many tests the drs have no idea why and just call it sudden sensory hearing loss. They also say they don't think it is linked to my SM. I don't think they know for sure. I am now wearing a hearing aid. Luckily I don't have the dizziness. I wish you luck. I want to know if other SM patients have hearing problems.

• By yellowroseli
• Reply 3759558
• January 31, 2013 at 11:30 am
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I have Idopathic Anaphylaxis and waiting for Bone Biospy results to see if I have SM. I have been experiencing dizzy spells for the last month. Years ago I had Dizzy spells and thought I had Meineirs. I went to an ENT and had ful testing for it. No Meineirs.
I suggest you see and ENT and get tested.

• By ddb
• Reply 3762243
• February 1, 2013 at 7:03 am
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I was diagnosed with Meniere's a few years ago. After further testing they actually found out it wasn't. I had extreme vertigo (the worst dizziness you have ever experienced) to the point I was having attacks so bad I couldn't stand up and would end up in bed because it wouldn't stop. Meds stopped working and it continued to get worse. I ended up having a vestibular nerve section (brain surgery) to cut my balance nerve so that it was no longer connected to my brain. My balance on my left side of my body is now controlled by my eyes.

• By Albymom
• Reply 3762495
• February 1, 2013 at 8:44 am
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I have had motion sickness all of my life and was diagnosed with Meniere's Disease at age 36 after a Hysterectomy. The hormones I was given after the Hysterectomy caused me to have frequent episodes of Vertigo (room spinning/off balance). I eliminated caffeine and followed a low sodium diet for the past 24 years. Antivert, Scopalomine patches and HCTZ helped very little. I have had constant ringing (tinnitus) in my left ear since the diagnosis. I do have decreased hearing in my left ear. I had some tinnitus/roaring in my right ear for a few months several years ago, but luckily it resolved. It is possible to have both ears involved.

I am in the process of a work-up for Mastocytosis/MCAD. I have had more dizziness with head motions since my Masto symptoms (flushing, weakness, headaches, rapid pulse, nausea, bladder spasms) began. I stopped taking my HCTZ because of all the dehydration from taking my Masto medications: Allegra 180 mg in AM; Zantac 150 mg in AM/PM; Singulair 10 mg in AM; Zyrtec 10 mg in PM.

I have been unable to take antihistamines in the past due to an increase in dizziness. I gradually increased my dose of antihistamines this time, but still have alot of dizziness with head motion, driving, etc.

My bone marrow biopsy was normal. I am having a colonoscopy this week to rule out Carcinoid. My 24 hour urine for 5-HIAA has been normal twice but I may have an Octreoscan to be sure that carcinoid is ruled out. My Chromagranin A was elevated at 92, but I take Prevacid 15 mg daily.

I see an ENT annually for hearing tests and more often if I have vertigo. He can inject steroids into the inner ear to treat vertigo, but I would only do that as a last resort. I want to get a definite Masto diagnosis first, before any other Meniere's treatment. Perhaps Masto is associated with Meniere's just as it is with some of the other autoimmune diseases.

Terry

• By yellowroseli
• Reply 3762526
• February 1, 2013 at 8:50 am
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Dear ddb,
what was causing you dizziness? Or did they never find out?

• By Sephardigirl61
• Reply 3764854
• February 1, 2013 at 9:14 pm
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I have just been dx with SM-aggressive form....not sure what that all means but, I seem to have had a lull in the last few days of my symptoms.....I just received some information about an issue that may contribute to mast cell disease-gastropoeresis....I will do some research to see what it all means....however, I have not had the ear issue....did have it years ago but, nothing new with everything else that has happened to mesince last July. Some days I am afraid to wake up or go out or to eat.....anyone else out there like this?

• By ddb
• Reply 3765073
• February 1, 2013 at 10:37 pm
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My balance nerve had become damaged. The cause is the question. The best guess is that it was from my birth. I was breech and had my feet wrapped around my neck. I developed a huge torticaulis after birth (nerve and muscle damage). Since that was also on the affected side this is what the doctors feel must have caused the damage. They said that since your balance gets worse as you age that is the reason I didn't have issues until my 30s. They said the reason I was initially misdiagnosed was because my symptoms looked classic. It was after a lot of hearing and balance testing that they found that it was actually a nerve damage issue. This thread interested me though because I am having some other health issues and doctors have thought autoimmune and can't find anything and someone brought up masto to me before. I have also lived with constant motion sickness but this was also caused by the nerve damage. No problems with this after surgery.