Merinere's disease

Ears, nose and throat
21

Dear Daniel,

I completely understand your reluctance to drive, when you're feeling so many symptoms.  You've got to put your safety first.

I'm not telling you what to do...I don't think you should do anything you're not comfortable with!  Nor do I think my advice should be taken!!  I promise!  But I can sense how desperate you're feeling.  And I'm thinking that perhaps now might be a good time to calmly and methodically, start trying things that might alleviate at least some of your suffering, while you wait out the next 9 weeks until your appointment.  I'd hate to see you allow yourself to be this sick for the next 9 weeks!  You have good rescue meds, now.    But, I can hear how afraid you are of side effects.  Have you had bad reactions to these particular medications in the past?  Don't take anything you know you're allergic to, or that has made you worse in the past.   

But, if you haven't tried it before, how about just starting with a half of a Valium?  Just take half, and see how you feel.  If it makes you feel calmer and a little sleepy, that's a good thing!  You need to rest and sleep during this time.  But it should also decrease some of the dizziness and help calm your stomach. Then, depending upon how you feel over the next few hours, see if you might even feel better with another half.  If not then just wait until you feel like trying again.  You can go slow and gradual, and still feel better than you do now.

Antivert is great for vertigo.   But again, just try half a tablet, and see how you feel.   It will take anywhere from 45 minutes to an hour, to begin calming the vertigo,  It will also make you feel slightly sleepy....but that's okay, because your nervous system is in an uproar right now...it needs a little calming down.  You've got to break the cycle.  Maybe you can get a good deep sleep tonight, after taking these meds.

Do you have something around the house that strictly for nausea? If you're feel nausea, then take ½ tab to start.

So, the worst side effects of the Valium, Antivert and any anti-nausea pills, should be sleepiness and constipation.  The sleepiness is a good thing when you're in an MD crisis.  Just don't drive when you're sedated!!  

But based on what your doctor said this morning, it  sounds like you really, really need to rid of that fluid in your ear, which is the source of all MD symptoms.  And with "MD ears", that's not a fast process.  So how about when you get up tomorrow morning, try taking a half of a dyazide?  Make sure to drink plenty of fluids, too.  Then take the other half about 6 hours later.   You know what the side effect of that will be!  :-).  Clear a path to the bathroom! And every time you pee, think "This is helping my ear!" ;-) Because, it is.   Then if you're okay, go up to the full dose.  That's the most critical part:  getting rid of excess fluid.

I don't mean to be overbearing.  It just sounds like perhaps it's time to try a few things that just might help relieve some of these symptoms....or at least make them less intense, and allow you to get some much-needed rest, until you can get back to your appointment at Shea.

RE: the steroids.  What has been your experience with them in the past?

Take good care and please let us know how you're feeling!!

J

 

22

OMG thank you for that JMJ! I have took valum before for it and it was no side effects I don't know why I'm scared now. The dyzide is what I'm most worried about cause of my blood pressure being already low. The steroid is dexamethasone 0.5 mg and he said take half a pill in the morning so that's not much probably no side effects I tried the step down dose a year ago and they made me really shaky that's why I worry about them. But what you said makes a lot of sense I'm gonna have to try it buy I better wait till morning so I don't be running to the bathroom all night. I might try half of the valum tonight it's only a 2 mg so half shouldn't have no side effects. I could talk with you all night what you said makes great sense thank you so much. I'm just really tired of living like this I can't even go watch my kids play ball or take them anywhere.

23

I did the all natural approach. Herb Horsetail and Ginko Leaf. It's really helping. Make sure your on a good multi vitamin and some d3 to boost your immune in the winter months. Get rest. Lay off salt and caffine. Hope that helps. It's helping me.

24

Dear Daniel,

I can completely understand your being scared and upset right now.  When I have really bad symptoms, I get very scared and panicky, and I forget things: like where I put my meds!  So now I carry a dose of each one in my pocket at all times! That way, as soon as I begin to feel even the slightest symptoms, I pop them in my mouth, chew them, and wait.  For me, the best way to cut through fear and panic is to have a simple plan in place.

And now, it sounds like you’ve come up with a good plan, too!  That’s wonderful!  I think you’re very smart to start off with half of the Valium tablet.  That’s a very tiny dose, and I don’t expect that you’ll experience any side effects.  If and when you feel dizzy, then you might try the same strategy with the Antivert - just take half, and see how you feel.  Those 2 meds work very well together to reduce dizziness and vertigo, and shouldn’t give you any side effects.  It’s perfectly normal to feel a little relaxed and sleepy about a half hour to an hour after you take them.  That’s not a bad side effect; it’s actually a good side effect!  It encourages you to do the right thing:  To just lie down and relax or sleep until the symptoms subside.  

Did the doctor prescribe an anti-nausea med?  If not, then motion-sickness pills like Dramamine will often do the trick, and you can buy them at any drugstore.

 

Also, I’m really happy to hear that you’re planning on starting the Dyazide in the morning!  The diuretic is a very important part of the program, in terms of getting at the root of the problem:  The fluid build-up in your inner ear.  It might take a week or so for you to feel a difference, but I’ll bet you’ll notice at least some bit of difference. Don’t forget to drink plenty of water to stay hydrated. My BP before going on Dyazide was 108/64.  I’ve been on it for a year now, and my blood pressure is still the same…even a bit higher sometimes!

I was on the step down Dexamethasone once, too, and that’s exactly how I felt:  Shaky and very hyper.  But 0.5mg really isn’t a large dose.  You might find that now you know what to expect, that it isn’t so bad.  I find that it’s much easier when I know what to expect.  But if you simply can’t tolerate it, then just tell your doc that you just can’t it!  That’s it!  No sense in feeling worse than you already do! (I hope your doc told you that you should always take it on a full stomach?)  

 

Well…my guess is that you’re going to feel much better once you acclimate to your new medications!  You know, I haven’t known a single person with MD to get better by toughing it out.  If it were a temporary thing, like the flu or a cold…well, then you might just tough it out.  But without taking the proper medications to calm down your nervous system, and reduce inflammation and fluid build-up in your inner ear, you just can’t control these episodes.  It’s got nothing to do with will power: It’s a very real physical disease.  It can make you feel crazy, that’s for sure, but it’s a very real disease that requires very real treatment.  It’s taken me a long time to accept that this is a chronic disease.  I really wanted to believe that I was “cured” when those injections finally worked.  But I wasn’t cured.  And now, I think I finally get it!

I hope and pray that you’ll take your meds as needed so that you can feel a little better and get yourself to the shea clinic in January.  If you stick with the steroid injections, you might be posting us in the Spring, that you have a brand new life!!  :-)  

 

Okay, so I’ve talked too much again!!!  I just want to see you treat yourself with some compassion, Daniel.  We all have plenty of suffering in this life, that we can’t do a darned thing about.  So when there are things available to us that can possibly reduce even a little of our suffering?  Well, then I think we owe ourselves that much!! 

Take good care,

J- 

 

25

JMJ you are so right MD can make you feel like your going completely crazy at times and a lot of times I have thought well this one is it I'm going crazy but I always pop out of it. It's amazing how much the body and mind can take I guess. And they gave me meds for nausea med it's zofran haven't took any yet usually the up set stomach doesn't last long. The off balance fullness ringing and all the pressure in my ear and head that builds up at times is the worst and the weaknesses that comes out of nowhere is horrible. But dang I got 3 little girls that's had to do a lot of stuff the last 3 years with out me!

26

Daniel,

Three little girls!  Wow!  You have 3 compelling reasons to get back on your feet!!  It's going to take some time, but I'm pretty sure you can get a lot better than you are right now.  

You know, at one time, I really did believe that I might be crazy.  I mean the symptoms are just so....weird, sometimes.  And they sound even more strange when you try to describe them to people who have never experienced them.  It's very isolating.  But when I finally found my way to my current doctor, I learned that everything I was experiencing was par for the course, when it comes to MD.  The cardinal symptoms....but also the anxiety, the fatigue...and even the muddled, fuzzy thinking that made me think I was losing it.  It's all part of the syndrome.  He was the one who also taught me the importance of taking rescue meds as soon as I felt even a whisper of a symptom coming on, because the key is to prevent escalation.  And he's the one who perservered with me through many injections, so that I could have my 16 weeks of freedom!  But here I am, back at square one, because I didn't jump on the recurring ear fullness,  fast enough.  And, like you, I'm working with rescue meds till I can get back and get my injections once again.  The oral meds are not a cure, but they do help.  Some days they help more than others, but they always help to some degree.  They give you a little space to work with.

You mentioned the ringing/tinnitus.  With me, so far, that simply won't go away.  And it fluctuates from low level background noise, to drive-me-insane-loud.  But when I'm generally feeling better, I can cope with it much more effectively, because I'm more distracted by activities. 

Well, I'm rooting for you, Daniel.  I think you've come up with a great plan, and I'm pretty sure you'll see some improvement.  You deserve a break...some space in between the "ick"!!  I hope this will give you a little space, and a lot of hope.  Sounds like you've got a lot of good reasons to get better!!

Let me know how you're doing.

Take good care,

J

J

27

Thanks again JMJ for all your help and I will keep you posted! Fingers crossed on this end for me and you to get better!

28

JMJ do you ever get head movement like it shaking a little? And yes you just don't know how many doctors I have had look at me like I'm crazy have even had a few tell me that's what was wrong with me and I even started be living it my self lol

29

Is it your head or your eyes moving? My eyes have been doing that since I got MD as well as visual field disturbances. Since the nerve involved in MD is also connected to the eyes you do get symptoms there.

30

Yeah donna my eyes bounce back and forth but my head also gets shaky.

31

Do you take water tablets ? I upped mine yesterday and now I'm fine.

32

I would suspect vestibular nerve involvement there. That makes it real important for you to get what you need to get some better control of your MD. By the way, my BP was usually in the 90s prior to starting dyazide and as long as i remember to drink to keep my hydration up I have had no real issues.

33

Yeah that what the doctor told me that it's all tied together eye movement and that could make my head feel shaky. He also told me if I drink plenty of fluids I shouldn't have a problem with my blood pressure that dyzide was to ride salt not lower blood pressure but I would loose fluid with that that would drop it but as long as I drank it should be OK mine usually runs around 105/65 so I guess that's not bad low anyway.

34

I haven't started my dyzide yet

35

You're welcome, Daniel.   And Yes!  Mayb we all get better!!!  

Take good care,

J

36

Hi Daniel,

RE: Head movements:  I haven't had any head shakiness that I'm aware of, but I have had my eyes dancing back and forth...My physical therapist saw it several times while we were working together, and said it was called "nystagmus" and commonly seen with MD patients.  

At that time, whenever I moved my head, it felt like this:  You know how in the movies, they put a movie camera on the end of boom and make big panning swoops?  Well, it felt like my head was the movie camera, on the end of a long boom, making big, sweeping, sickening swoops!!  Try explaining THAT to someone!!! I wish I'd taken pictures of my first doctor's face, while I was trying to explain!  LOL!! So... when you tell me that it feels like you're head is shaking....I believe you!!

J

J-

37

Hi Vicky,

Yes.  I take 2 Dyazide 25/37.5 mg per day.  One with breakfast, one with dinner.  Even on the low salt diet, I couldn't go without them.

I'm so glad you're feeling better after upping them!!  "MD ears" are so sensitive to fluid levels!!!

Take good care,

J

38

Lol yes I know what you mean about doctors looking at you crazy and over 3 years I have been tested for everything you can think of I have had 4 stress test done a heart recorded implanted I kelp in for 3 month because during a spell my heart would race up to around 150 beats a minute but my heart always shows healthy. My therapist said it could be my body's way of not passing out I have been through it all in the past 3 years no telling how many ER visits be down and couldn't hardly walk going in after an hour or so be back to normal blood work always fine that's when they really look at you crazy. Lol. This MD is something else they say it can't or won't kill you but I swear I think I have been close.

39

I've had crazy symptoms for nearly a month now - only managed only 1 day and 3 hours clear.

I wish you well - I'm willing to trial anything now

40

Hi Daniel,

Just checking in...Praying that  you're feeling a little better after starting on your meds!  Hope you'll post so we'll know how you're doing...

Take good care,

J