When you have meniere’s attacks would you say they come in clusters or do the attacks happen with some time in between? For the most part my attacks have usually occurred with sometime between them, although after my gent injections the time didn’t seem to be very long. I received a comment last week from kelownagamermom…
Here is the comment
I can agree that the stress and anxiety of a pending attack make the attack that much worse. I am presently experiencing my first ever series of cluster attacks, started 4 weeks ago. Been in hospital 5 times in all, and almost again today.
I am lying in bed with my laptop, completely stoned on Gravol which I discovered can ironically have dizziness as a side effect. Also being tested for MS as I type this. The MS spectre has been raised off and on for the last 3 years, and is one that is too frightening to contemplate. This also adds to the overall stress of being on short term medical leave from work, stressing about parenting (I'm a single mom of a teen) etc. I wonder if anyone who writes to you David has had clustering of attacks like this? I'm worried something else might be going on besides the Meniere's.
First of all, Let’s hope and pray that it isn’t MS, dealing with MS and meniere’s would be unbelievably difficult. As for the question about cluster attacks if anyone has any comment or input please share it.
thanks
Sunday, May 22, 2011
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11 comments:
Hi
I have definitely had cluster attacks. When I first got this ugly disease the attacks would be spread out but about 7 years into it they started to hit in clusters. Sometimes lasting for weeks, some for months. Last summer I was in bed from June to October but since then have been back to work with only one spin attack since.
In hind sight the clusters are around times of allergies or stress. Of course the attacks add even more stress! I have been on allergy shots since last October and use a Meniett Device that seems to be working miracles for me.
Good Luck!
Deb
I was having cluster attacks for a good part of 2010. That's when I got serious about pursuing medical intervention, although I never needed to be hospitalized. I did, however, end up keeping a bowl near me at all times, sometimes carrying it from room to room if I needed to move. I even had to keep one by the bedside because I never knew when an attack would wake me up from a deep sleep.
I imagine stress played a big role, because I spent all of last year on unemployment after being laid off in late 2009. As time went by and I was getting no responses to my resumes, I became more and more anxious. The Meniere's made it all worse, of course, so I ended up in a downward spiral of Meniere's and anxiety.
What worked best for me to stave off attacks or increase the time between them was valium (diazepam); I also found the gentamicin shots helped for awhile, but it was the labyrinthectomy surgery that shut the cluster attacks down completely. I'm still chronically dizzy and am seeing a neuro-ophthalmologist tomorrow about the ongoing nystagmus I have all the time now, but at least I was able to put all the bowls away.
Good luck!
I had cluster attacks as well, if cluster attacks mean having one or two attacks each day (or night) for several weeks in a row. For me stress probably was the trigger, but after a while it continued even when I thought the stress was a lot less. Of course the attacks in themselves create stress. Things improved when I managed to stay calmer during attacks and after we had arranged help with the kids (3 and 4 years old). Somehow accepting MD would be helpful, but I understand that that is very hard to do. I can't...
I find it impossible to accept this illness and all the ways it mucks up my life. In a way, that's good, because it keeps driving me forward to find ways to beat it, even if all that means is reducing the severity and frequency of attacks.
My trip to the neuro-ophthalmologist was beneficial, but in an unexpected way. The eye doctor wasn't getting anywhere with ideas that would help, but she did bring in another neurologist who specializes in Meniere's and is doing research on it now. He was fascinated by my case and spent some time with me.
His advice was to go back to vestibular rehabilitation therapy, since I've already had the labyrinthectomy surgery. He said I'm doing "well" for this number of months post-surgery, and that I will continue to improve.
Unfortunately, he said I will probably never get rid of the nystagmus completely. But I find it hopeful that he is certain I will keep reducing the amount of dizziness I have now.
I've come a very long way from the cluster attacks of last year. I have to keep that in sight.
Lately I've been getting clusters, too. Except not several per day but rather one or two per week. Sometimes they are the slam attacks where the world spins for violently for a several seconds and then followed by disequalibrium for 20 or more minutes, usually about 2 hours. Sometimes it's just the disequalibrium. I hope it ends soon.
It's interesting to read about the results of seeing a neuro-ophthalmologist because my otologist recommended I see one after I got my first slam attack in February. He doesn't think that is Menieres and he wants to have me checked for migraine-associated-vertigo.
I've never been quite sure what the doctors mean by cluster attacks as I've myself had two kinds of what could be called clusters. There's always been a broad pattern in the 5-6 years I've had Menieres, whereby I'd have several months of having attacks and then months of almost nothing (maybe an isolated episode in the middle). This cycle has happened three times. Generally I would have thought each cycle was a cluster; this is a long-term illness after all.
However, within those attack periods the attacks themselves have varied. In the first cycle the attacks were once per month. In the second cycle they were once per week. In the third cycle they were much more frequent, I would have attacks (albeit less severe) maybe two days in every three, sometimes even two attacks per day (or night). I've sometimes seen these closely-packed attacks referred to as cluster attacks, so I'm not sure really.
Anyhow, the overall good news is that the periods in between can be lengthy and the severity and therefore impact of the attacks has decreased steadily. I'm always aware of my illness but I'm thankful for some stability.
BigDaddyThinks, it seems worth seeing a neuro-ophthalmologist, if only to rule out the possibility of migraine-related vertigo. I spoke to Charles Della Santina at Johns-Hopkins about my situation, and he brought that possibility up, too. But it would be periodic, and my dizziness and nystagmus had become chronic and continuous, so that wasn't the answer for me. Plus, my vertigo did respond to the labyrinthectomy surgery.
To my mind, the more experts weigh in on each individual case, the better. If one doctor doesn't have a strong opinion or useful answers, move on and try someone else.
I hope the neuro-op has some answers for you.
I was diagnosed about a year ago and the attacks keep coming. They have come in clusters for the last three months. I went June 1, and started the gentamicin injections. Well they only put a tube in the ear drum for needle access. My first shot is scheduled for the seventh. I'm currently still working, but I'm worried if the gentamicin injections will cause more balance issues. My doctor is telling me that I'll be ok to drive and return to work the same day. Is that anyone else's opinion thats had the injections.
Chad, I don't think most people have a strong reaction to the first gentamicin injection.
The way the drug works is cumulative. It is ototoxic, which means it kills some of the structure of your inner ear, including the tiny hairs that carry sound to your brain, and the vestibular nerve. When the vestibular nerve has sustained enough damage to make the vertigo stop, you will also find you have lost half of the system that enables you to keep your balance. Some people experience this after a few shots, some need more. It took seven shots for me, if I remember right.
When the nerve stops functioning, you will feel like you are having a vertigo attack, have trouble walking, possibly throw up. But your other vestibular nerve will begin trying to compensate right away, and after a while you will find you can manage again. You might want to try vestibular rehab therapy once the gentamicin has done its job, to speed up the compensation process. It can be a few days or a week or two. It depends on your individual system.
Hope that's not TMI... talk to your doctor about this. It never stops amazing me how little doctors explain to patients.
Good luck!
@bigdaddythinks,
Someone I know has been suffering a bit over the last year (having previously first had Meniere's about a decade ago) and has now been told by a new doctor that she may have vestibular migraine (aka MAV). She's a bit confused by this but will try eliminating various foods from her diet to see if it makes a difference.
I was told that the defining characteristic of Meniere's was fluctuating hearing, so I'll try to find out if she has that. I do, but I have also had the photosensitivity that seems more commonly linked to migraines. The pattern of your attacks is very similar to what I was experiencing in 2009.
To follow on my original post from May, thank you for all the interesting comments about cluster attacks. I have since been positively diagnosed with MS this past November. I am told by the neurologist that the Meniere's is separate to the MS, and that I have both disorders. I won't go into the emotional difficulties with regards to receiving this diagnosis, but suffice to say it has been a challenge. I am now uncertain what has happened to my body, and whether the Meniere's is actually the MS. It's all extremely frustrating and debilitating. Would be interested to know of any out there who are dealing with both these illnesses and how it has affected them.
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