New to MD and Need support

Ears, nose and throat
1

I was just diagnosed with MD within the last month after an episode of sudden hearing loss upon waking up in June (hearing has not yet completely returned).  It took a while to get a diagnosis (1 month) and before I even knew what it was, I had my first ever true-blue Vertigo attack.  I was on predinose for 3 weeks in the beginning before the MD diagnosis with raging Tinnitus.  Since then I've had many dizzy spells of varying degrees, intermittent spells of tinnitus that last a week or so and two more all out vertigo attacks.  I'm now on a diuretic but so far I don't see any result.  I had my last Vertigo attack 2 days ago and I've noticed that after each attack, the tinnitus temporarily goes away for about 3-4 days and then comes back.  Has anyone else experienced this?  

I travel on business A LOT and have not dared do much since this all started.  I work out of my home when not on the road and can see that would be manageable but I'm not sure about the travel.  The diuretic makes my hands shake uncontrollably at times which is very frustrating.  I've been a long standing sufferer of migraines and had been under a successful treatment plan for years that really managed those -- when this started happening I had to add a 2 day migraine to the pile of misery (while I was traveling).  I'm not sure if it's just the stress of the whole thing or what.

The doctor asked me if I had any stress in my life and I laughed in his face.  I have 2 special needs children, am the primary wage earner in my household, hold an executive position and fly all the time.  Yes, I have stress.

Sorry to vent but this feels good -- My husband is trying to be supportive but I can tell he's already put off by my daily (and some times hourly) updates of how I'm feeling and what symptom I am or not having each day.  I get that it's stressful for him too and so I'm looking for other means of support.

One question I have for anyone to answer -- Have you experienced the same pattern of Tinnitus for a week ot 2 at a time, followed by an attack, followed by no tinnitus for several days and then a repeat with dizzy spells in between?  I'm trying to figure this thing out as it's very difficult to plan my life with this.  Maybe there's no such thing...

Anyway, thanks for 'listening' and I'm very grateful I found this forum.

2

When you say Tinnitus do you mean ringing or noises like a washing noise, buzzing or just aware of your ear? I knew I had bad hearing in my right ear since a bad cold years ago and when I asked to get my ears syringed I was told my tubes were blocked, end of discussion..

Nothing happened until December 2014 when I was outdoors and felt a bit off, went for fuel and got an awful smell of petrol leading to hours of being sick. Several months later I was at home sitting down watching TV with my laptop on my knee and the room spin, I shouted to my husband, managed to get to the stairs and crawled up ending being violently sick in the bathroom and out of it for hours in bed. I had several more turns usually in the house but occasionally in the car as a passenger maybe going up hill or down with everything flashing past me.

I went to my GP who took my bp which was high so back in two weeks and it was still high. I had to take my own bp twice a day and note it down working out the average with the doctor . It turned out to be the higher side of normal so ok. I was put on 8 mg of Betahistine & buccal tablets for sickness. There were still spells of dizziness and scary side effects from the buccal. I discovered I should not be on buccal as there was a history of blood clots in my family. Now on 16mg Betahistine three times a day, I take a paracetamol first thing and another later in the day and an Amitriptyline at bed time to deal with the pins & needles sensation in my head and helps me sleep . I have had four steroid injections in my ear drum and it has helped.

It is horrible and scary illnessand your confidence gets knocked badly. You learn what upsets you and what to avoid with me it is temperature like a hit kitchen, moving my head too much to the side even sitting at a round table because of head movements. I prefer to go out with my husband rather than on my own as he knows what to look for and I say if I feel it coming on. I spent months sleeping on my left side in bed as unable to turn over in bed without getting dizzy luckily ok with that now. The main thing is don't panic when it happens, sit, shut your eyes until the room stops spinning, try and focus on a spot in front of you until you can get up to lie down . Good luck.

3

As the symptoms are affecting significantly your everyday life, you should ask your doctor about intratympanic corticosteroid injections to get longer term relief.

Eleftherios S. Papathanasiou, PhD, FEAN

Clinical Neurophysiologist

Fellow of the European Academy of Neurology

4

It appears, after following the discussions on this site, that symtons vary for each person.  My symtons started 15 years ago with vertigo upon waking.  I felt as if the world was spinning but usually the spinning would subside after going back to sleep for 1 to 2 hours.  For  the next day or two, i would just feel a little wobly but no vertigo.  The vertigo would happen very infrequently maybe twice a year.  No hearing loss or pulse like sounds in my ear. Then for maybe 5 years no vrertigo but gradual hearing loss.  I had several friends and relatives with similar symptons so I just believed it to be part of the aging orocess and lousy genes.

     This all changed this year.  On June 4 while driving to pick up a friend I felt as if my eyes moved on their own.  I had a weird feeling but not extreme dizziness.  I made it to my friend's house but at that point was unable to drive.  She drove  my car back to my house and since I was unable to even walk into my house without assistance, we called 911 and I went to emergency.  I don't remember dizziness at this point but was violently ill.  After maybe two hours in emergency, I was able to walk out unassisted.  Then I had another attack on Monday while I was sitting watching tv.  No warning just very dizzy and throwing up for at least an hour.  Extreme dizziness passed but wobbly for next day.  Similar attacks on that Wednesday and 9 days later.  I don't remember when the pulsating started in my left ear, maybe the beginning of June.  With each dizzy spell, I remember only one bout of the spinning.

    Then no attacks intil June 29.  On that day I spnoticed that the left side of my face was drooping.  I could not even raise my left lip and my left eye would not close.  I thought it was was a stroke so off to emergency once again.  After all sorts of cognitive questions and requests to move my limbs, the doctors said not a stroke but Bell's Palsy.  They also did blood tests, MRI and a CAT scan.  Blood test showed that I had contracted Lyme Disease.  I just dealt with the extreme fatigue that goes along with Lyme Disease.  Still slightly dizzy but no major attacks.  Pulsating in left ear continued.  At this point, I would say that I am almost deaf in this ear.

      During this period I visited an ENT doctor and hearing tests and other balancing tests were oerformed.  Extreme defficiency of hearing in left ear was confirmed.  The doctor said he thought it was Meniere's but said there was no test that could say it was Meniere's but all my symptons pointed to Meniere's.  I went to another specialist in middle of July and again no definitive  diagnosis but symptons pointed to Meniere's.

 My question for both of the doctors was could it all be the Lyme Disease that was causing my problems.  They both said unlikely but again no true test to diagnose Meniere's.

     This past Wednesday I went out to dinner with friens and had a disagreement with a friend which was very stressful.  While driving home, i felt weird and really stresed out but not really dizzy.  I made it home and walked unassisted into my house and collapsed into my recliner.  I felt dizzy at this point but kept still.  I was violently ill and threw up everything in my stomach.  After throwing up, i no longer felt dizzy and really none of the symptons that I had experienced after other attacks.  I am hoping that this episode was caused by the meal of lobster and not Meniere's.  

     Sorry this was so long and please excuse my typos.  At this point, i feel uncertain about my future.  I have very little hearing left in my left ear and am afraid to drive and must rely on my husband to tske me any place.  He is the only one that I feel secure with when I go out so my social life no longer exists.  Also I know this is a partial repeat of a previous post but I just neeed  to put it down in print. 

   My question at long last last to Sister Sledge is do you experience any problems when flying.  We are in the process of selling our home and when it is sold, we must fly to Texas and buy a home there and then return to Pennsylvania to pack up for the move.  Flying is very stressful for me and I'm afraid of an attack while in midair.  

 

5

I think the sickness must be the worse certainly for me as I hadn't been physically sick for years . The Betahistine 16mg dose per tablet has helped but I still need paracetamol too. I don't drive anymore as I don't know when I could take a turn so yes it makes you dependent on someone else. If you get the chance of steroid injections take it as I found it helped. 😀

6

Wow patvj -- you have so much going on -- I'm so sorry.  Thankfully I've always had a 'strong stomach' and have never (I think) thrown up unless sick with the flu -- I get extreme nausea though and wish I could throw up...

Anyway, regarding flying - I flew during the period where they didn't know what it was and I was fine other than the hearing.  The tinnitus sounds like that really loud whooshing noise on the plane so they almost canceled each other out.   

That being said, I've become very accustomed to all the stress and things that travel brings, and if you aren't familiar and are prone to vomiting I'd suggest a couple of things:  1) Get to the airport early, 2) Take a drammamine (sp) or other motion sickness medicine before the flight, 3) Inform the flight attendant that you have severe vertigo and may need assistance and 4) If there's any type of relaxant that your doctor can presribed take one and sleep.  

I know you've heard this many times and don't believe it but it's true -- flying is far safer than driving - far far safer.  I'd also say that it's a lot less likely to make you sick as it's not as herky-jerky as driving (I have gotten very car sick -- massively nausea many many times in cars).  If it's any consolation I used to have great anxiety over flying and have absolutely none any more.

Best of luck

7

Thanks so much for your quick reply.

8

I'm not sure I have any answers to your questions but just wanted to say that I feel for your situation! I have two young children and work full time. These attacks can be totally debilitating. At times they make me feel like a bad mother, incompetent at my job and relatively isolated. I don't want to complain about my symptoms all the time, but it's no fun to feel lousy. I guess that's why I even found this site to begin with! I almost had to laugh at your comment about your husband because I do the same thing. I actually ended up creating a spreadsheet when I was first diagnosed that tracked my diet, symptoms, sleep, etc. It was probably a little obsessive but it gave me a sense of control and was a way of venting.

I have had MD for two years. It started off with attacks and periods of hearing distortions (I don't get Tinnitus per se). After making all sorts of dietary adjustmentes and drinking lots of water, I went almost six months without another attack. I continue to have them rarely and generally only when something throws me out of kilter (like sleep deprivation or accidentally consuming MSG that wasn't labeled as such). Each time I have an attack it takes me a little while to get back on my feet again. I guess I say this to give you hope in that maybe once you can get in a good pattern it will continue? 

I see a really fabulous ENT and his approach is to steer clear of meds unless it is absolutely necessary. I just happened to go on vacation and needed to see a doctor. She was quick to try to prescribe a diuretic for me. You may really need these medications, but I offer this info just in case your meds are making things worse. I do take Lorazepam if I have an attack and I find it is helpful. I am not functional, but at least it prevents vomitting.

Please update us on how things work out for you! 

9

I'm not sure I have any answers to your questions but just wanted to say that I feel for your situation! I have two young children and work full time. These attacks can be totally debilitating. At times they make me feel like a bad mother, incompetent at my job and relatively isolated. I don't want to complain about my symptoms all the time, but it's no fun to feel lousy. I guess that's why I even found this site to begin with! I almost had to laugh at your comment about your husband because I do the same thing. I actually ended up creating a spreadsheet when I was first diagnosed that tracked my diet, symptoms, sleep, etc. It was probably a little obsessive but it gave me a sense of control and was a way of venting.

I have had MD for two years. It started off with attacks and periods of hearing distortions (I don't get Tinnitus per se). After making all sorts of dietary adjustmentes and drinking lots of water, I went almost six months without another attack. I continue to have them rarely and generally only when something throws me out of kilter (like sleep deprivation or accidentally consuming MSG that wasn't labeled as such). Each time I have an attack it takes me a little while to get back on my feet again. I guess I say this to give you hope in that maybe once you can get in a good pattern it will continue? 

I see a really fabulous ENT and his approach is to steer clear of meds unless it is absolutely necessary. I just happened to go on vacation and needed to see a doctor. She was quick to try to prescribe a diuretic for me. You may really need these medications, but I offer this info just in case your meds are making things worse. I do take Lorazepam if I have an attack and I find it is helpful. I am not functional, but at least it prevents vomitting.

Please update us on how things work out for you! 

10

Yes. After my vertigo and night of throwing up my guts uncontrollably, my tinnitus disappeared for a good 4 weeks. Since then, it comes and goes, the tinnitus. Since then also, I've adhered to 1000mg or less of sodium daily, and have been ok. I do have tinnitus here and there, some occasional dizziness. But I feel the diet is KEY. I'm on a spiranolactone daily, and Claritin. I too found myself giving my husband daily updates, and even tho he's very supportive, I could tell he's sorta tired of it. This has changed our eating obviously. I don't drink much alcohol anymore. We still go out, I'll sip a beer, and then stop. I'm not letting this ruin me or my life. We travel, actually we just got back from wknd in New York. I'm fine with flying. Now, I'd LOVE a big fat slice of pizza. But I also prefer to avoid vertigo and vomiting lol. I miss pizza the most. However, I've found great blogs with others that have great recipes and where to go to find salt free foods. This has been a lifesaver for me. I'm not one who needs to lose weight, but with this new diet, I've lost 8 lbs, so I'm thrilled I've found foods I can eat!! Hang in there. This is doable, YOU CAN DO IT!!! 👍😘

11

I sympathise with your situation. This is a very unpleasant disease and often rather scary. My first and most major attack was totally debilitating in October 2011 and came totally out of the blue and resulted in hospitalisation. Recovery was a very slow affair but symptoms attenuated and disappeared after 18 months. Last August it came back suddenly when I woke up one morning. It was far less severe than the first attack but neverthelss my doctor hospitalised me as she was very worried about my low blood pressure. When asked she said such low bp was worrying unless one was a top athlete, which is hardly my case. After one night in hospital I checked out and rather shakily got myself back home. Thereafter I did some phsio and it helped. It would appear that people suffer from this in multiple ways and that there is no silver bullet. I cannot definitively say that my approach is the best one but I find that excercise is really helpful. Indeed I find that after going to the gymn or swimming I feel much much better. Indeed, despite some initial reticence I found that I could enjoy skiing just as before and that driving my motor cycle was also once again a pleasure. I know this sounds odd but activities that really require concentration on balance are for me extremely beneficial even though some people may find that a counter intuitive approach. My message is that although you may be one of those that continue to suffer there may be physical activities that you can do that you may find beneficial, even enjoyable, that can help. My pysio was indeed helpful but boring. The other activities were, for me enjoyable and appeared to help a lot. I hope that you find the approach that you can fit into your life and that gives you confidence to go forward.

12

I noticed that you said you're on a daily Claritin. Is that supposed to help with MD and, if so, how?

Also, you say you love to travel. What are your go-to orders when you're out at a restaurant? I'm convinced that this is a disease where we are going to learn more from each other than doctors (though they have invaluable contributions too) so I'm all about asking questions and getting info. Thanks!

 

13

I started the daily Claritin on my own. I've read on this site and other places online that antihistamines can be additional help. My go to when ordering out is hamburger and fries with no seasoning. Some restaurants pre season their hamburger patties, more of the chain type sit down restaurants than others. We find restaurants that hand make their patties, and it's worked out for me so far. Same with steaks. No seasoning. Of course there is some flavor from the grill, but it's negligible. I've actually ordered a salad before, and could see the salt! Unbelievable! I do a quick small taste of anything I order. It's amazing how much one can tell salt on or in food now. I don't use dressing on salads, I'll order it on side, and occasionally dip my fork in it. You're right. We have to live life. I know others here have had hospital stays due to MD, and everyone has their comfort zone. This has worked for me **knock wood** For now, while this works for me, I will continue this way, in hopes my symptoms don't ever worsen like some on here. For me, the low sodium diet is key. I did it for 2 months though, before I saw results and symptoms stopped. I get occasional tinnitus, and dizziness still. It's just enough to remind me I have this dreadful disease. But I'm living my life, not letting this disease rule me!! Also, At home we frequent our regular spots that know my orders by heart 😀

14

Did you find the Claritin helped with the ringing ? Has anyone said what caused the Meniere's?

15

Age -23

Diagnosed- MD

prescribed-

1-Lasix

2-valium

3-vertirest

4-mactotal

advised to-

1- avoid salt

2- drink less water(2L)

At first doctor diagnosed SNHL due to cold. 2days later the moment I got up from the bed felt severe head reeling and vomited continuously for 7-8 times. It was awful. It took me to the casualty bed. Then the other day doctor diagnosed MD.

I have already gone through certain sites explaining details about MD . And I came across certain words that made me so ill and depressed thinking about it.

(Incurable ,Drop attack, and will happen again)

and eventually I come up with the following questns in my mind

Do I need to take these symptom suppressing pills all my life ??

Is it going to happen again??

RightNow I am worried about drop attack as I used to move on bike everyday.Is there any pre symptoms before drop attack??

Need help and suggestions

THaNK YOu

16

Hi,

I take 16mg x 3 Betahistine every day, I believe that the dose can be increased if necessary & 10mg of Amitripilyne at bed time also a paracetamol in the morning & again at lunchtime. I eat regular meals/snacks and although very rarely touch wine anymore I refuse to give up coffee. I have had steroid injections in my ear and it has definitely helped and I would get them again. Happy to take any amount of medication if it keeps the horrible swimming feeling & violent sickness from happening.

17

Ps I try not to panic and if possible sit and fix on a point in the distance until I can move again. I don't think I have had a drop attack but then I have usually spun in the house where I could grab something even if it meant crawling up the stairs. Incurable yes but it's not terminal so you don't lose your life you learn to modify it .,

18

Hi lizzie

how long are you suffering from MD??

I started feeling fullness in left ear on 16th of this month .On 20th (saturdsy) got severe vertigo followed by nausea. On sunday diagnosed MD. I am taking medicines(3×16mg betahistine along with diazepam) but still dont feel comfortable completely.

I have no idea how long it will continue or may be I wuld be feeling the same for many years.(plz help me to knw abt this specifically)

Actually I am preparing for various xams which are going to start by 2nd week of october till december end. Now with this disease I am unable to concentrate on studies. And I fear if it happens again during exam months then it wuld be a worst experience in my life.

19

Hi,

It would be December 2014 when I first had a weird episode while my husband was fueling the car and it felt like my nose, sinuses , mouth etc had opened up and someone was holding me over an open can of fuel . Straight home & violently sick for three hours , it might not have been the start but four months later I was sitting on the sofa with my laptop on the arm and the TV on and the room spun and again sick for hours . Had an MRI scan, ecg and all clear so it pointed to Menieres. After another few spells I was advised to stop driving by my GP. Saw ENT specialist who did an assisted lower (horrible) and corrected my crystals in my ear. This helped and on 8mg x 3 Betahistine daily and 5mg Buccal when I felt sick. After a few months I discovered I shouldn't have taken Buccal as I had side effects including palpitations (scary) and a history of blood clots in family. I was prescribed Amitripilyne for the pins & needles sensation in my head and it helps me sleep. The four steroid injections I had worked the best so now on 16mg Betahistine, two paracetamols & one 5mg Amitripilyne daily and ok most of the time. I avoid stress caused by tiredness, hunger, thirst and a full bladder and heat and I can only now read a book again as had problems looking up and down with head movements causing nausea. I had to give up swimming dye to risk of a turn in the water or large white tiled areas making me dizzy . Haven't cycled since in case as GP said not on concrete & a self employed dog walker so couldn't afford broken limbs. Happy to answer any questions you might have just remember it's not life threatening just limiting.

20

Just might be worth trying a physiotherapist. It has really helped me.