Relapse After 16 Weeks
Posted , 8 users are following.
Thanks to steroid injections, I've been free of vertigo for 16 weeks. But last night, I had a relapse. I was in the basement doing laundry when suddenly, it was like I was in a centrifuge - the room spinning at 200mph. I had no warning signs, so I wasn't able to get to my rescue meds. I reached out for something to hold onto, and the next second I was on the floor, wretching. It was a doozy.
Looking back, I should have paid more attention to my body. For a few weeks, I've been experiencing increased ear fulness, increased tinnitus, my hearing has been increasingly difficult, and I've felt a little "spacey". . When it first started, I assumed that perhaps I'd been getting lax with my sodium intake, so I really paid more attention. But apparently, that wasn't it. I think the effectiveness of the steroids simply ran its course. Hopefully I can get an appointment on Monday, for another injection.
I'm wondering if other people who have had success with steroid or gentamycin injections have experienced a relapse, and what that was like. Did you experience a gradual increase in ear symptoms before it hit? Did it feel like something was trying to "break through"? Did you wait for the vertigo to return before getting further injections, or did you get them as soon as you felt increased symptoms?
I have only experienced one episode that was worse than the one I experienced last night. Most of the time, I've had some warning sign, but this was completely without warning, and the spinning was relentless.
Thanks so much for any input!
Take good care...
J-
4 likes, 121 replies
mistibluey JMJ
Posted
Kidney stones! lol. I sometimes say this too shall pass when I am having a bad time with something. I don’t suppose I will be able to say it with a straight face in future.....
I hope you are feeling a little less dreadful.
I found an article in a science journal about a long term trial of steroid injections that was done in Egypt. They put a grommet in to do frequent applications. If you are interested I could try to give you info to find it , if I don’t fall foul of the rules again.
All those posts that were deleted make me look as if I was abusive or something awful like that. They were all innocuous (well maybe they took issue with the one where I said that if I was in russia I would have been sent to the salt mines by now).
JMJ mistibluey
Posted
Misti,
I don't know why they keep reminding us so often that you're in the doghouse!! But now I get it: You might have upset international relations, with the salt mines comment! LOL!!! Just kidding!!
The first time the moderator thing happened to me, I was positively mortified!! I couldn't imagine what I'd said that was so bad...Then I finally clicked on the 'Why" button and read the fine print....Still, I felt like people probably thought I must be saying really terrible things! LOL! Dont' sweat it....I'm pretty sure everyone understands!
I'd love to read the article. Hopefully you can find a way to describe it without getting locked up again!!! :-)
J-
mistibluey JMJ
Posted
Will give it a go now
mistibluey JMJ
Posted
JMJ mistibluey
Posted
Take good care,
J
JMJ mistibluey
Posted
Dear Misti,
That was an excellent article. I'm going to print it out and bring it with me to my appointment on Monday. There are some great points I'd like to discuss with my doctor.
I found the administration via grommet to be interesting, but especially the injection schedule: Weekly at first, then progressing to monthly, and finally self-administration of drops by the patients. That is so very different!
I've always wondered why I couldn't get more than one injection monthly. (Dose related, perhaps?). Especially now, where I'm feeling 100% exactly the same as I did before my treatments began to work: I'm not having even an hour symptom-free. If I'm not feeling the spins, it's dizziness and/or nausea, and/or imbalance and/or crazy ear fullness, tinnitus and hearing loss. I'm sickened by the idea that I'm starting all over again, and that it might require 8 months to feel well again!! I'm praying that one injection will zap my inner ear back into shape. But who knows? This is all uncharted territory for me.
Thanks again for the article. Very interesting and informative.
Take good care,
J-
mistibluey JMJ
Posted
Hi J – I have been wondering how you are feeling now; I felt so bad for you that you had such a terrible episode after months of near normality. Not too long now until your appointment. Hopefully your doctor will be willing to start the treatments again and will be able to answer your questions about why this attack was so bad.
You are in our thoughts; although she does not contribute to or read the posts on the forum, I do tell my friend about the various contributors and she asked me to send her very best wishes to you.
Misti
JMJ mistibluey
Posted
Hi Misti,
Thanks so very much for checking in! And please tell your friend that her best wishes mean a lot to me. I truly appreciate such thoughtfulness.
Yesterday, I began to feel a slight "lifting" of the fog. It was so great to feel somewhat functional for a few hours (..."Grown woman cries tears of joy that she emptied the dishwasher without throwing up!" Sigh.). But, then I had a very weird experience: For about an hour, I lost about 50% of the hearing in my "good" ear. It scared the %#!! out of me! I have no idea if that was MD related or not. I just can't tell. So today? I'm doing NOTHING to rock the boat! My ear is very full and my tinnitus quite loud, so I'm just reading the Sunday papers and doing email. That's it! My one and only focus is to stay stable, so that I can get to that appointment tomorrow.
Thanks again for checking in! I hope this finds your friend feeling much better. How's the meditation working out for her? And you...are you feeling any less stressed out? I send you both my best!
Take good care,
The Couch Blob
mistibluey JMJ
Posted
J -
So sorry about the sudden hearing loss. I hope it's nothing serious.
I thought you would like to know about a study I read about. I am assuming that your steroid injection was dexamethasone? A company called otonomy is trialling a sustained exposure formulation of dexamethasone called OTO104. It is being given fast track designation by your FDA in the states.
It's still just being trialled but I know you like to keep up to date with developments.
Hope it goes well at the doctor's office today.
angela84522 mistibluey
Posted
mistibluey angela84522
Posted
Hi Angela. You are welcome. It makes me feel a little less helpless to do some research and find out some info. It's such a neglected condition, so it's good to know there are some projects going on.
angela84522 mistibluey
Posted
I so agree. I have been reading daily trying to figure this all out. I love the info you are finding. Thanks again. It's a lonely thing. Hard for people to understand and I feel like all I do is complain anymore. So not like me. I planned a big family dinner and had to go lye down at meal time. Or planned a dinner out with friends and had to leave right after we sat down. Yesterday I went to decorate a tree at a fundraiser event and was there for two hours and they started sawing wood in the same room and laying brick and spreading dirt.. my ear started to fill up with pressure. I said I have to leave. I feel so helpless anymore. It's embarrassing.
JMJ mistibluey
Posted
Hi Misti,
Just got in after having the injection. My doctor doesn't seem to think I'll have to start from square #1 again, but he did have me book another injection for 4 weeks out. Audiogram showed a slight loss on the "good" side, so we'll monitor closely changes.
My insurance won't approve of a an every 3 month preventive regimen of injections - you have to have symptoms.
Thanks so much for the reference! Yes! I'm very interested in any developments in the area of Meniere's treatment. I look forward to reading about the OTO104!
Again, thanks very much!!
J-
mistibluey angela84522
Posted
Angela, It is a lonely thing and not much understood by most people. I'm sorry you are feeling so low and so vulnerable at the moment.
You said in another thread that you are trying a natural approach and that it is helping you. Perhaps you are just going through a bad patch and things will improve again? I hope so.
Are you considering the steroid injections that helped JMJ?
mistibluey JMJ
Posted
Do let us know how you go on.
angela84522 mistibluey
Posted
JMJ angela84522
Posted
I'm so sorry Angela....It sounds like you've been going through a really tough time. I'm glad today was a better day for you! It's very difficult to accept a recurrence after you've been symptom free for any period of time. I hope things get better for you soon. If things get unmanageable, there are still option you can try.
My best wishes!
J-
JMJ mistibluey
Posted
Hi Misti,
Thank you so much for your concern and good wishes! I'll keep close tabs on my hearing in that ear. Not much else I can do at this point. Can't wrap my head around the idea that it might effect my good ear as well. I think I'm going to go into a healthy state of denial on that one!! At least for a while!
RE: OTO-104: Wow. Interesting study! So they've formulated a Dexamethasone that will adhere more effectively to the inner ear structures. With regular Dexamethasone, you're essentially giving the inner ear a "quick 10 minute bath", and then it drains out and is absorbed by the body, to be excreted. I will be so interested to see if the OTO-104 yields better results than the standard regimen of 10mg Dex every 4 weeks. How amazing that the same stuff is being used to prevent chemo-induced hearing loss! I'm going to talk to my doctor about this OTO-104 at my next appointment. Maybe I'll finally burst into the investment world and buy myself 2 shares of stock for my next birthday! :-). It's about $18/share!
I forgot to tell you: I brought my doc a copy of the Egyptian study today, and he actually read it while I was in getting my audiogram done! He later told me that he started out using that method. But he found that there were sufficient numbers ("not many, but enough"
of ruptured eardrums using the grommets, that he decided to go with the injection-only protocol. Of course there wasn't enough time to talk about it in any depth, but I appreciated that he read it and that we could discuss it for a bit.
Hope you are well. And, I can't tell you how much I appreciate your telling me about various studies that you've found online. I'm deeply grateful. I've been so wiped out, I just haven't been able to do it. And, I think you contribute a lot of great stuff to the forum in general. Thank you.
Take good care,
J