Relapse After 16 Weeks

Yes, it knocksd my confidence, indeed.  Ugh.  I really should have called my doctor a few weeks ago when I noticed the ear fullness wasn't going away, but I was just too busy dealing with all of the other problems! Next time...as soon as the fullness lasts more than a couple of days, I'll be on the phone.  

I got an appointment for an injection tomorrow morning, but then 5 minutes later, the nurse called back and took it away from me!  Said I had to take Monday 11/21.  I'm too tired to argue.  I'll wait a week, and just pray that it's not a bad one. 

Thanks for your  thoughts and good wishes.

J

Oh good so glad you are getting another one. Well it sounds like it wears off. Hmm let us know how you are doing this week and how you feel after the shot. Thank you for sharing. It really helps us all know the other options. Really hope you have a vertigo free week.

Just had a major episode last night.  By the time it was over my stomach was completely empty.  My left ear usually doesn't feel as full the day after but hasn't cleared at all as of yet.  Keeping my fingers crossed.

Thanks Angela!  Yep....I guess they wear off.  I have to admit that after about  8 weeks without the vertigo, I dared to hope that I was "cured".  I could kick myself for not making the appointment as soon as I realized that the ear fulness wasn't going away.  Perhaps I could have nipped it in the bud.  I could live with it, if I needed an injection 3 or 4 times a year to keep things calm.  I'm going to talk to him about the idea of a preventive schedule.  

I just hope I don't have to go back to square one, now.  I hope it will just require one or two injections to get things back under control.  Only time will tell.  

It's funny....You can't beat 16 weeks of no vertigo.  Then it happens again.  And then you feel like it never really went away.  My head just won't seem to get clear again, and my ear is so full and so loud.  And I'm kind of walking at a tilt....I keep stumbling to one side..... Ugh.

Thanks again.  And take good care!  I'll let you know what happens. 

J-

Oh David....I'm so sorry.  I know how horrible you must be feeling.  RE: Continued ear fullness after attack:  You really need to take it easy.  That could mean that you're still in crisis. (For me, the episodes tend to happen in clusters.)  My ear hasn't cleared after my last episode either, in spite of continuing a fairly high dose of Triamterine/HCTZ, and I still feel so weirdly hungover in that way you only understand if you've felt it.  I'm praying that another episode isn't on its way, but my ear is just so full, I'm not eliminating the possibility.  

I hope you're just laying down and taking it very easy, and drinking plenty of water.  Surely you must be dehydrated after such a major episode.  I hope you're not planning to do anything at all today.  You need to let your poor body rest.  

Did this episode come on really fast, or did you experience the extra fullness,hearing loss and/or wooziness for a period before it started?  It doesn't sound like you had time to get to any rescue meds.  But it might still help to take them after the fact. What do you normally take?

Take it easy.....really easy, today!   Let us know how you're feeling.

J-

Oh no.. do you have any diuretics available to take? Ughhh.. that's the worse.

David,

How are you doing?  Any better?   Hoping today was a better day!

J-

Dear Misti,

I appreciate your writing, so very much!!  And thank you for doing some research on the injections.  Your timing is amazing:  I was just writing some notes to bring with me to the doc next week, and and I JUST wrote down: "? How about an every 3 month preventive injection?" I had no idea that a 3 month schedule was actually. recommended in the literature.  But I've had severe ear pressure and a decline in hearing for 3 weeks now (remember when I thought maybe I was consuming too much salt?)  I was too distracted by the flu, pneumonia etc...(with maybe a pinch of denial thrown in?)....to really pay attention.  That, I believe now, was the "signal of the beginning of the end."  The Meniere's Crisis was brewing, and it was just a matter of time before the vertigo hit.  

So now I know: The effects of the steroids began to wear off in about 13 weeks.  A maintenance injection every 3 months seems perfectly reasonable to me! Do you remember where you read that?  (This site won't allow you to include url's...so just a site name or url with no formatting included, would be great!). I always like to go armed with source documentation.  (Sigh.  Why do I forever feel like a soldier going to battle, rather than a patient seeking help?)

I wish I could tell you that I felt great, but I feel like I'm in a big bubble full of noxious "Meniere's Fumes": My ear is still full, my head is swimming, I'm nauseous (ug), I'm stumbling, and I'm so exhausted.  And here's a new one: I'm weepy!  I'm NEVER weepy!  Normally, I'd have to pull at my nose hairs in order to get a tear going, and now suddenly I keep getting weepy. I wonder if I'm losing it!  

How quickly I got thrown back into this "altered universe", where nothing is normal.  My memory is already dim with regard to what it felt like to be without the vertigo. I'm also experiencing hyperaccusis - something I haven't experienced since my earliest days with MD.  It's such an irony to be so deaf, and yet so sensitive to sound at the same time!  The mailman rang the doorbell a while ago, and I nearly jumped out of my skin: it was so painful to my ears.  

Okay....enough moaning and complaining from me!!  I appreciate your checking in and sharing your research!  How's your friend doing?  Stable, I hope.  Did she see her GP?  Any helpful meds?

Thanks again.

J-

Hi again J

 

I’m going to do two posts.  First my friend.

 

It all only started at the beginning of August so we are trying to learn if there is a pattern to it all. They seem to come in a pattern of one big one followed by several smaller attacks over a week or so, and then a good spell.

 

 It would have been too many weeks until we could get an appointment with her GP  so she is waiting to see what they say about meds when we go to the hospital in December. But I did find that I could buy Buccastem without prescription, so that is the first of her rescue meds that she can carry with her.

 

We wondered if some of this is because of her other health problems. She has a vascular disorder that we are hoping will be helped by a pine bark supplement that is supposed to be good. She is hoping that if it helps circulation in general that it will help circulation to the ear.

 

There was a Colorado University study that seems to show that temporary low blood flow in the brain might be a cause of Menieres.If you Google “Researchers may have discovered a plan to disable Meniere's disease” you should find the article about it. 

She is being strict with the salt and also trying meditation to reduce stress, and I am trying to deal with stress better as I can wig out a bit about things and probably I crank up the stress factor for her.

 

Hi Misti,

It makes a lot of sense to collect all the data you can about the patterns of your friends' episodes....It will help her with medication management and prevention, and it will help her doctors arrive at a diagnosis.  

You may have something there, with the circulation theory.  (I enjoyed the article very much. Thank you!). I hope your friend has good luck with the pine bark.  You just never know what people are going to respond to.  It's always worth a try. Way back when I first started on this odyssey, I read about the John of Ohio Meniere's Regimen.  A LOT of people seemed to be helped by that program.  That's how I was introduced to Vinpocetine and Ginko, two more supplements that increase microcirculation.  I had bad reactions to some of the other components of that program, but I stayed with the Vinpocetine and Ginko for many months. In the end, they didn't work for me, but I believe that they help plenty of other people.  Who knows what accounts for our individual responses?  Probably genetics, but it will be a while before we can access that repository to find individual solutions to problems like this.  

I give your friend so much credit for meditating!  I've been trying to get back into meditation for months, but I can't seem to discipline myself to do it!!  Good for her!  And it sounds like her efforts to control her stress are indirectly helping you, too.  :-)

I hope the Buccastem will work quickly and effectively as a rescue med.  That nausea is a killer. I wish her all the best!

Take good care,

J-

Oh Boy....now mine is being moderated.  I'll go back and edit and resend. I think I might know why.  I referred to the author of the article and my city and a few other specifics.  I will edit and try again!

J-

 

Dear Misti,

I see that one of my posts never made it to you.  So...I've switched to another computer.  I don’t think my tablet likes this site.  I’ll see how long I can last sitting up.  I'm not having a very good day. 

I so appreciate your looking up that reference for me.  I know the guy who wrote that article. He was one of the 2  choices I had,  back when my ENT said that I had to see a specialist for injections....They are the two "Big Guns" in my area, when it comes to Meniere's treatment, and they couldn't be more opposite!  The author. is a real zealot when it comes to Gentamycin.  My doc is completely pro-steroid.  He'll administer Gentamycin in  low doses, but only  if you fail with steroids, completely.  He would never start you off with Gentamycin, at any dose.  

I think their difference in philosophies stems from the focus of their practices: My doc's career is mostly about medically and surgically restoring hearing loss.  The author's is mostly about dizziness and vestibular disorders. So I think one is more sensitive about giving someone a drug with such a high risk for hearing loss, than the other.  I know he minimizes the risks - and in his article, denies seeing any low dose Gentamycin-induced hearing loss in his clinic.  But my doc disagrees.  He believes there's risk at any dose.  Additionally, my doc said that he's seen increased vertigo for 2 weeks post Gentamycin injection, in nearly all of his patients.  Although, he  admits that if you can deal with a very miserable first 2 weeks, that the payoff is at least a good solid 6 months of freedom from  vertigo.  

How do you really know who to believe?  I just went with my gut...

For me, if I can be stable and keep the little hearing that I have left, that's what I prefer.  If I have no hearing at all in that ear, I won't be a candidate for a hearing aid, which is what I very much want to get, once he tells me that I'm ready for one. 

I have always been a huge music lover.  Losing my hearing, for me, has been like a prison sentence - in full isolation.  I just can't believe how different my life is now.  I've complained so much already, I won't go into it.  But I really believe that if you're at the point where you've failed conservative treatment, and you haven't yet lost all of your hearing, that it's worth trying the steroid injections.  I suppose if you've already lost 100% of your hearing in the affected ear, then perhaps the Gentamycin  might be a wise choice.  I'm not really sure.  I need to learn more about it. 

I feel fortunate that I live near a university xenter, and that I only have to drive 40 minutes to get an injection.  It hurts me to know that some people just don't have those services available to them.  The procedure really doesn't seem to be that  complex....It seems to me that lots of doctors could be trained to perform the procedure safely.  I think it has something to do with Meniere's being such an oddball condition....It's almost as if it's the b*&%#@d child of ENT diseases!  The black sheep!  Nobody wants to deal with it!  It's too complicated!!  Not too glamorous!!  Arrrrrrgh!!!

 

Thanks so much for your encouragement, and reassurance that I’m not losing it.  I had another episode last night.  Again, no warning.  Very messy.  Very sick.  I’m so tired.  And, I guess I’m dealing with that feeling of having absolutely no control over anything, right now.  I really had made peace with it before, but I think I “forgot” after about 8 weeks of freedom from the vertigo.  Now I’m being slammed back into reality.  

Knowing there are so many more people than just me suffering from this disease, keeps me from feeling sorry for myself.  But still, this weepiness, which is new…..I don’t know…. think it’s frustration...I think it’s a sense of powerlessness.  I just need to be more patient.

 

I did read something very funny earlier:  “This Too Shall Pass:  It might pass like a kidney stone, but it shall pass.”

 So there you go.  ;-)

Take good care.  And thanks again for your encouragement. 

J-

 

Oh...and I spelled out b-----d!  Maybe THAT was it?! LOL!