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
My last comment was supposed to be a reply to your one but last comment. Other people seem to manage to do it as a reply but mine always ends up at the bottom and not after the comment I'm replying to. Ah well.
Your usual tinnitus sounds unbearable, truly awful. I hope the tinnitus-lite continues. I just posted on the alternative therapies thread about something that can distract a bit from it.
I do admire your positive attitude to everything. I think I would be complaining rather more! Sorry about the 2sudden" ageing, but I can see it was a little funny. My vis does not look so good these days, losing weight left me with a bit of a turkey gobbler under the chin!
Getting older sucks - but its better than the alternative.....
JMJ mistibluey
Posted
I wonder why your replies aren't staying attached to the posts you're replying to? That's strange.
Thank you for your post on the Alternative thread...I'm going to explore mynoise. I took a quick look, and bookmarked it for tomorrow when I'm fresh. I'd be interested in both the tinnitus cancellation stuff, as well as the binaural beats/relaxation downloads. I have such a huge problem sleeping.
Yes...the "sudden aging" was pretty funny. Honestly, I had no idea! And the neck! Ooooh! Turkey neck, indeed!!! LOL!!!
Positive attitude! No one....and I mean NO ONE could possibly complain more than I have over the past couple of years. Especially the first year of non stop vertigo and nausea....It seemed to suck every last shred of positivity from the core of my being. I think I adopted "Sick" as my identity...it's actually been kind of difficult to throw that off. But I keep trying....that's the best I can do.
I agree that getting older sucks: the physical part. The aches, the pains, (the sagging!), the weakness etc... But I find that there is more freedom emotionally and spiritually, as I get older. I don't know quite how to explain it. Perhaps it's just early onset senility?! LOL!
My blurry eyes are drooping. Time for bed. Sleep Well!
J-
mistibluey JMJ
Posted
J
That is very disappointing for you. I would still be interested in what it was you thought helped, if you feel like saying.
Perhaps there will be some improvement in the tinnitus when you have been taking the pine bark for a few months. I hope so. I hope you didn't have too much trouble driving in the snow...
JMJ mistibluey
Posted
Hi Misti,
About a month before my eye surgery I was discussing working out with my 19 year old nephew. He lifts weights and rows for MIT....very athletic, and very knowledgeable about "nutriscience" when it comes to exercise. I was complaining about my arthritis, stiffness, and how much more difficult exercise had become for me. And, how as I get older, I'm having a terrible time developing any muscle tone at all. So he told me right off that I should be taking a "PreWorkout" supplement. I told him my limits re: no salt, no caffeine etc..., and he came up with one for me to try. He said this one was identical to the one made for women, except it was double the does and less expensive! So I took a half dose everyday:
It's essentially a combination of several amino acids that are supposed to help dilate blood vessels, build muscle, and reduce muscle fatigue. The amino acids are delivered in an anti-oxidant fruit powder base. It contains:
L-Citrulline, L-Arginne, Beta Alanine, L-Glutamine, L-Leucine, L-Isoleucine, and L-Valine. I wasn't able to read the container or the online ad, prior to my surgery, so I only just realized that it does contain a small amount of caffeine via Nautral Green Tea Extract. I wonder if that gave me a little extra diuretic "oomph" for awhile, but then backfired, as caffeine is supposed to aggravate tinnitus?
It also contains Maca Root Powder, Acai Berry, Blueberry, Red Raspbery, Pomegranite, and Stevia for sweetening.
I really noticed the difference in my workouts for the month that I was using it as a pre-workout supplement. It was energizing, and I was definitely experienced less stiffness afterward. Then I took it each day for the following 2 weeks, even though I couldn't exercise (can't resume heavy exercise for another week) mainly because it seems to have a wonderful anti-depressant effect on me! It really puts me in a good mood all day!
It was during those last 2 weeks that I noticed the radical reduction in my tinnitus and increase in my hearing. It was unbelievable! And then, as I described earlier, out of nowhere, the tinnitus resumed for a few hours, receded, returned, receded... And now, I'd say it's back up to about 50% of my norm. It had receded to about 90% less than my norm! So, I don't know what to think.
The problem with these supplements that contain a million ingredients, is that you just never know what's working and what's not! I suppose I could go out and buy each ingredient individually and try them one by one, but I'm just not up to it. I suppose I should be happy with a 50% overall reduction, but I'm just uneasy that I might be doing something that it the long run, is going to screw things up.
Of course, my doctor thinks think that the improvement could just as well have been the last steroid injection doing its work, and he could be right! Who knows? I'm fooling around with too many variables.
So that's the scoop. In my next reply, I'll enter the name of it, and take the risk that it might end up in the dog house!
Take good care,
J
JMJ
Posted
Hi Misti,
I have to laugh at the names of some of these products...I'm sure that's what sells them. The one I tried was smart muscle 3-in-1 natural performance amp, and it's available on amazon. The women's version is clean + lean natural performance "plus".....same ingredients but half strength.
Always an adventure! ;-)
Take good care,
J-
mistibluey JMJ
Posted
Hi J
The whole “alternative” thread was deleted by the moderators. I have no idea why. It seems a shame when people posted such interesting and useful comments.
I’m sorry that you had some kind of reaction to the pine bark. Do you have allergies to other plants or nuts or anything like that?
Perhaps you started it too soon after your other supplement that you mentioned here? It seems a very complex mix. Interesting that you felt energised and happier on it. I suppose there is no way to work out which components, if any, had the good effect on your tinnitus, and trying them one by one would take so long and cost a fortune. Also, they might not work in isolation; it could have been a synergistic effect. Or perhaps the steroid treatments are having an accumulative effect on the tinnitus as well as the other MD symptoms?
JMJ mistibluey
Posted
Dear Misti,
I can't believe the whole alternative thread was deleted! There was almost nothing in there that hasn't been mentioned in other threads. And certainly, no one was pushing his or her views about anything.
I will say that I was surprised that one post went uncensored — only because it mentioned an MD protocol put together by a guy from the Midwest and very early on, I was put in the dog house twice for naming it. But other than that, I can't figure out why it would have been deleted!! Could it simply have been in error? I don't know if it's possible to communicate with the moderators. Did they leave a note saying that the thread had been moderated, the way they do when a post has been moderated? Hmmmm. I don't get it. Perhaps start it again, and see what happens?
RE: the reaction to the pine bark. I've had many outright adverse reactions to various drugs and supplements, and I've had things disagree with me in strange ways, but I can't remember ever having a classic redness/itchiness allergy to anything in my life. So, I decided to give it another go today and so far, so good. So, I'm going to stick with it for a while and see how it goes.
I wish I could tease out what it was that gave me that 2 weeks of relief from the tinnitus, but there's just no way for me to figure it out. As you suggeted, that was a very complex mix! But really, the happy effect was quite incredible. I'm such a low energy person, that it was fun to feel peppy for a little while. ;-)
I'm just going to continue on with the injections, as I [u]know[/u] that they have been steadily helping me, well before taking those supplements. In fact, the injections are the only thing in this whole big mess that I really have any faith in. It could very well be that they're beginning to have a cumulative effect on the tinnitus as well as my other symptoms. I've always said that keeping the vertigo away was enough for me. But if I could also get rid of some of this tinnitus? That would be a huge bonus, and would make me a very happy woman!
It's amazing how much guessing goes on with MD: We're always asking ourselves "Why"....Why our symptoms fluctuate...why an attack comes at one time vs. anothor. Why certain treatments work great for some but not for others. Why everyones symptoms look a little different....It's all just so much mystery.
Well...I hope we can get to the bottom of that happened to the alternative thread.
Hope all is going well with you! Take good care, and talk soon!
J-
mistibluey JMJ
Posted
Hi again J
How is it going? I have lost track of how frequently you are having the injections - are you due for one?
Also, are you still taking the wonderfully named smart muscle supplement and do you think there has been an effect on your tinnitus?
The alternative thread - I emailed them to ask why it was taken down and got this reply:
" because it became a thread for advertising specific products and websites."
I am assuming that the product they were referring to was pine bark but I don't recall any particular website being mentioned frequently.
Keep in touch. All best wishes
M
JMJ mistibluey
Posted
Hi Misti,
I'm doing okay. My next injection is on April 10. Yes...I've been taking the crazy muscle supplements, half-dose, and I can't say with certainty that they're helping, but my tinnitus continues to be a fraction of a what it was a couple of months ago. I'm afraid to stop doing everything I'm doing, just in case!!
How's everything with you? I'm surprised about the response about the deleted thread. If that was a thread about brands and websites, I wouldn't have spent so much of my own time looking for brands and websites!! LOL! Well....perhaps we could give it a try at some later time.
I hope all is well. Lets stay in touch!
J-
mistibluey JMJ
Posted
Hi J
I didn't realise it's been over 2 weeks since I last posted. How are you? You said you were having another treatment on the 10th - hope it went well. What about the tinnitus? I do hope you continue to be well.
I was thinking of trying another alternative type thread but felt a bit disheartened that so many interesting posts from different people got deleted all in one go, so I'm not sure about that.
My friend is still waiting for an appointment with a consultant. Sigh.
I hope everyone on the site is having a happy and healthy Easter. x
JMJ mistibluey
Posted
Hi Misti!
How are you feeling?
My injection went great, thanks! I'm going to try to go 6 weeks this time. My tinnitus is increased a little this week, but I'm wondering if it's allergy-related: I had to go for an emergency eye appointment today, as my eyes were nearly swollen shut! Very painful. Turns out, I'm having a major Spring allergy attack! I'm 60, and never in my life have had Spring allergies! So the doc gave me some heavy duty steroid/anti inflammatory drops. I hope things will be significantly better by tomorrow!
I feel badly as well, that all of those interesting posts were deleted. Still, I think it might be worthwhile to resurrect the alternative discussion...It's a legitimate topic, and certainly reflects the interest of a lot of people on the forum. Perhaps just explain that the former thread was deleted because of mentioning name brands and sources (I think that was the complaint? I'm not sure, now...). I just think it's great to know what sorts of things are helping people, outside of the standard stuff.
BTW...Today is day#28 for me, on the pine bark. I can't say that I've noticed anything yet, though. But from what I recall, it takes a few months to really manifest results. That's okay.....If MD has taught me anything...it's patience! Sigh.
I can't believe your friend is still waiting for her appointment. I hope she continues to feel better from all of the positive changes she's made in her life. Please send her my best!
It's so good to hear from you! Please keep in touch and have a wonderful Easter!
Take good care,
J-
mistibluey JMJ
Posted
Hi J
I was waiting for your post to be let out of jail - did you change it? I can’t see what the problem was if you didn’t.
Oh you are in the wars again! You don’t seem to be very lucky this last year. It’s interesting that you mention late onset hay fever because I was just reading an article on exactly that subject and had sent a link to it to a friend who had the same experience. Try googling Why are so many people suddenly suffering from hay fever in middle age?
Apparently there is an increase in “urban hay fever” where air pollution makes us more sensitive to pollen. I did start a thread here once asking if people thought there might be an allergy element to their MD.
Didn’t you say that where you live has chewable air? Chicago I think you said. The article says that stress can also make hay fever worse. It’s all so complicated and everything is inter-related. Let me know what you think of the article?
You mentioned the pine bark and how long it takes to work ( if it’s going to). As I said before, it had no effect on my friend’s tinnitus but helped her CVI. We don’t know if it helped the vertigo - something certainly did but she had tried other things as well. It took six weeks for the improvement in the CVI. Other people on the forum – Angela in particular I think - found it helpful, but I can’t recall how long she was taking it before she noticed a difference.
It’s been a few days since you posted, so I’m hoping that your eyes have settled down a bit. Poor you!
M
JMJ mistibluey
Posted
J-
mistibluey JMJ
Posted
Oh dear.... your last comment took four days to be let out and some of mine are still in there with no hope of parole. Perhaps you could break down what ever you said into shorter comments until you get to the problematic one? It usually seems to be brand names or websites, I think. Possibly the pb?
You know a lot of people are asking on the site about the steroid injections and I think if they went through the lists they would not think that one entitled "relapse..." was about a treatment. You were asking if other people had had the same problem but there does not seem to be many people here who have had the injections. Do you think it would be helpful to other people if you started a new thread about the steroid treatment - how it helped you, what happened when it was too long between treatments and the schedule that has been worked out now? Just a thought.
What did you think of the article about hay fever? I have seen the combination of pollution and hayfever referred to as grayfever. It seems to be a growing problem. It's hard to see how it isn't going to cause increasing probles for people. I wonder if there is a link to MD?
I joke that , as a Londoner, I don't trust air that you can't see but it seriously has to have been a factor in my own messed up sinuses. Off subject but still ENT at least.
JMJ mistibluey
Posted
Oh boy....I think I'm on the Meniere's Watchlist!! But as I browse a few different threads, there seem to be a lot of moderated posts! Much more than I've ever noticed before. I wonder if it's related to the survey they did recently? IDK.
Well, I'll try again!
Grayfever! Thanks so much for referring me to that article.....very relevent!! I'm guessing that the allergies are responsible for this recent increase in my tinnitus, as well as the eye misery. I'm now on mast cell inhibitor drops for the eyes, but I don't think there's much I can do for the ear. Non-drowsy antihistamines allow me to stay awake during the day, but they don't let me sleep at night. Regular antihistamines make me want to sleep 24/7! Ug.
That article also mentioned swelling of the tongue and itchy mouth! I've been having both, but keep ignoring it because it just seems too crazy! But there it was in print. And interestingly, it says that this is a response to a combination of eating apples along with exposure to birch tree pollen: I have 2 apples a day and I have 2 birch trees out front. Sigh. So, it's not my imagination after all. Sigh.
We had a very mild winter, so I don't doubt that the higher pollen count combined with the ever-increasing pollution, is probably playing a major role in this sudden onset. It's just so strange to feel it so suddenly. I don't see the air quality getting better any time soon, in either of our countries. The antihistamine business is probably going to boom! We're going to have to become expert with our home remedies.
RE: there being a link between allergies and Meniere's: Last time I was in, my otolaryngologist said that this is his busiest time of year in terms of seeing MD patients, He said that in his experience, it seems like allergies really do make mischief with MD ears, but there's no real research to support a conclusion.
I try to contribute to all the threads where the mention of steroids seems appropriate. (I often wonder if people are thinking "Oh here she goes again with the steroid speech!" Lol! ) But perhaps you're right — Having the information all in one place and with a better title, might be a much better idea. What do you think the title of the thread should be? "My Experience with Steroid Injections"? Or simply "Steroid Injections"? Let me know what you think.
I really do think that stress plays a part in Meniere's, and I keep hearing more and more wonderful stuff about meditation. So in my moderated post I did mention that I was looking at a 10 day meditation retreat (I won't mention the name this time!) But now that I've read more about it, I don't think I could handle it: Meditating from 4:30am to 9:30pm with just breakfast and lunch, and a piece of fruit for dinner, while observing completel silence....I don't know if I'm tough enough for that! I'm going to search for a gentler method! I would love to know how many people on the Meniere's Forum are meditators. That would be an interesting thread as well!
I'm sorry to hear that you're sinuses are messed up, but how could they not be, with the air that you've described? My God. The ace in my pocket when my sinuses get bad is a sinus rinser....Much more convenient than a neti pot. (I also think that idea of putting a little vaseline on the edge of your nostrils to catch particulates, was an interesting idea!)
Well, let's see if this goes through!
Always great to talk with you! Take good care,
J-