Has anyone had horrific side effects from meniere's meds? Help! :)

Discussion in 'Your Living Room' started by brandon, Sep 28, 2006.

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  1. brandon

    brandon New Member

    ??? I've was diagnosed with unilateral meniere's in fall of 2003, but have probably been afflicted with the disease for more than a decade. I've tried just about every dietary and medical regimine with varying degress of success. I have yet to go through with a shunt or a meniett (but my Dr. has indicated that these are options), but one of those may be on the horizon. My vertigo attacks are few and far between these days. . .but my hearing continues to decline.

    Yesterday a.m., I had a pretty bad attack. . .the kind where you are so dizzy you vomit, etc (sorry :() and it really caught me off guard. I don't know why. . .I mean, hey, I have meniere's, so. . . . But I think the infrequency of my attacks at this stage in the disease can lull me into a sense of feeling like I'm better than I am.

    Regarding the attack itself, I kind of woke up to it. . got out of bed, made my way down the hall to the bathroom, and felt a bit like and pinball as I bounced between the walls of the hallway. I knew the attack was starting to peak, so I called my job and let them know I would be down for a few hours at the least. My employer has been very gracious and understanding over the last few years, and that has been more than a blessing. In my mild panic and desire to quash the attack as quickly as possible, I made my way to the medicine cabinet. My sense is that I probably took a bit too much medicine. I know I took a dose of a the benzo, and i seem to recall taking some sub-lingual atropine and a little anti-vert. In retrospect, I'm not sure why I may have taken all three, as anti-vert usually does nothing for me except make me sleep and benzos seem to arrest the attacks the best. Sub-lingual atropine, while it may work for others, doesn't seem to do a whole lot for me. Be that as it may, my recollection of things is that I took all three in conjunction. I don't know if some of you have experienced this. . . .but when a vertigo attack begins to hit me, my body feels so other-worldly. .. .i'm more sensitive to light, touch, and movement; i.e., I want to be in the dark, don't want anyone to touch me (even on the forehead), and I remain motionless to keep the effects of the nausea at bay. Additionally, my sense of what is real and what is not real seems a little skewed. As I've tried to describe an attack of vertigo to other folks, I've often suggested that it must be like a bad "trip" that one might get from taking certain drugs. While I'm not a drug user (except the ones mentioned above and sometimes dyazide :)), I wonder if the 5 senses are altered in a way akin to how they might be while having a bad trip. Vertigo attacks for me have been what I call a "hallucination of death"; i.e. I feel most finite, human, and completely vulnerable and helpless while in the midst of one.

    Well, the vertigo attack came and went in about 4-5 hours (the attacks always end at some point, thankfully), but I was unable to get out of bed for several hours. I felt like I'd been beaten with a club. . . .of course I always feel like this after an accute attack. . yet yesterday was different. The meds really seemed to flatten me completely, and I later found out that i had a couple phone conversations with family during the attack that I don't recall at all. While this was kind of embarassing, it doesn't surprise me. I'm trying to recall exactly what meds I took and why, if I did, did I take more than just the benzo. My best guess is that when the attack hit, my judgment became impaired. . . .this has happened before. . . .but I've never taken more meds than I need to. Usually I have something with me, and if I feel an attack coming on, I take the med to be on the safe side. This usually decreases the duration of a given attack.

    Yesterday, however, I found myself wondering if the downside to taking the meds I took yesterday outweighs the benefits. By 7 pm last night, I was still having trouble forming complete or meaningful sentences and I'm barely functional today. I'm working today, but I feel really slow:) The benzo, in isolation, works the best for me. . . especially if I'm in a place where I can lie down and remain motionless til sleep rescues me :)

    I realize this may be kind of a convoluted question, but:

    Can anyone else relate to all of this?
    In particular:
    1. the disorentation/ confusion that accompanies the onset of an attack?
    2. a sense that you have overmedicated?
    3. a difficulty remember what exactly transpired during the attack (whether that is due to the mind-altering affects of vertigo or meds that might have been taken). or difficulty remember conversations had during the attack?

    Thank you for taking the time to read this. Any feeback would be much appreciated. Please forgive me if my presentation of this question is not the most clear and concise. Again, I'm really feeling "the day after" and typing this has been difficult. I could proofread it 10 times before I post it, but with the way my brain is working this am, I'm afraid it might not make a difference.

    Thank you all for what you do and for sharing your stories. It means so much to me, and I know it does to so many other meniere's sufferers as well.

  2. Aladdin

    Aladdin Guest

    brandon - medication is a blessing but also can cause other symptoms - as you pointed out - use is sparingly

    meclizine does not make me tired; ativan is used only when nothing will stop the dry heaves even accompany zofran if I must.

    there are some who never experienced the gut wrenching vertigo you describe - this type of vertigo can strip us of our senses and leave as vulnerable as a new born child - it totally rocks my world but in a bad way

    hugs & prayers
  3. gardenfish

    gardenfish New Member

    "I don't know if some of you have experienced this. . . .but when a vertigo attack begins to hit me, my body feels so other-worldly. .. .i'm more sensitive to light, touch, and movement; i.e., I want to be in the dark, don't want anyone to touch me (even on the forehead), and I remain motionless to keep the effects of the nausea at bay. Additionally, my sense of what is real and what is not real seems a little skewed."

    THere you have described by experience exactly and other point in your post do so as well. This will help folks who are new to all of this.
  4. Wobbles

    Wobbles Storm (April 15, 1992 - November 17, 2006)

    Hi Brandon,

    Yes, I can relate to the idea of over medication. It has been a while since I've had a vertigo attack, but I can remember taking meds and wondering if I was overdoing it. My big dilemma was how to balance off my antinauseant (Gravol) with my Lorazapam (benzodiazepam). Both meds had the tendency of making feel slightly woozy. I used experience as my guide. My doctor encouraged this, saying that everybody is different and needs to find what works for them.

    Still, I hated vertigo so much that I thought it was better to feel some wooziness if it meant avoiding the deep discomforts of a major vertigo attack.

  5. burd

    burd New Member

    Hi Brandon,
    Your description of the attack is what mine feel like too.  But I have never over-medicated so your description of after was not what I have experienced.  I only take one anti-vomit med (promethazine) and once when I got it a bit too late then I experienced a long drawn-out attack with no vertigo but extremely bad dizziness which lasted for over 24 hours instead of a few hours of vertigo.
    But I'd rather choose the dizziness since it's easier to take as long as I don't try to get up and walk, but I'm able to move my head slowly and sit up.

    But so many times my promethazine kept me from an attack and for that I will always be grateful.  Caught in time all I feel is just side effects of the meds which is sleepiness and a touch of dizziness.

    Be careful with mixing meds.  I know some can be done but you may want to check into the possibility of reactions before doing it again.  I found a website that allows you to find out if you can or shouldn't mix whatever meds you type in.  Can't remember the name of it though.
    But it shouldn't be too hard to find.
  6. gardenfish

    gardenfish New Member

    ask a pharmacist about meds contraindications. The appreciate being asked. They really do.
  7. SpinininOhio

    SpinininOhio New Member


    When I was having two and three attacks per week, the doctor put me on a maintenance dose of Lorazepam. I never felt worse in my entire life. I was constantly dizzy and tired and sleepy and really sick feeling. Once I was off of it, I knew that a great deal of my misery was caused by the meds. Plus, they stopped working to reduce the attack because my body had gotten used to them. I get a similar, but less intense response to Meclizine as well. I tested it by taking a small dose next attack. I found that I am better off without meds unless the attack is very violent.

  8. dizzy_banker

    dizzy_banker one a good day at the office...

    Hi Brandon-

    I posted my first blog today here of my first attack on August 15 2006, and it was as horrific as yours it seems, and this really frightens me. I have been diagnosed only 4 weeks ago, and thought the medicine that I am taking now, Hydrochlorothiazide at a dose of 25mgs daily is what is controling my disease. I take it every day, whether I feel dizzy or not. Do you only take meds with this disease when you feel the onset of an attack? I am so new to this that I am learning alot just today reading about everyone's experience with this lousy deck of cards we have been given. So, my question to you and others and since I can not answer your question because of lack of experience being a newbie to Menieres is....Does your neurologist suggest you take meds daily for the control factor even when you have not had an attack in a long time, or am I just fooling myself thinking that if I take this stuff every day, I won't even have another attack like the one you and I both recently experienced.
    Thanks for talking about this, and I share your experience and know where you have been.
  9. cheese

    cheese New Member

    Hey dizzy_banker

    The hydrochlorothiazide you are taking is a diuretic to help stop your body retaining fluid ......im sure you know that though

    For many, so I am told, it is enough to keep the disease at bay ....Or at the very least, reduce the frequency of attacks. Unfortunately though, there is no sure fire way to totally control the disease. But it may be enough in your instance.
  10. brandon

    brandon New Member

    Hello, dizzy banker!

    Thanks for your response!

    As you can probably tell, everyone's exp with the disease is a bit different, and different medicines seem to work better for certain people. What actually works well is hard to pin down. In my understanding, this is due in part to the nature of the disease. There are times where its' symptoms come in to your life like a tidal flow and other times where they seem to recede out of sight. From what Dr.'s have told me, that is just the natural progression of the disease. It is easy make the assumption that a certain med is working well when symptoms seem to abate, but, unfortunately, the absence of symptoms may having virtually nothing to do with the meds you take :(

    That being said, this is what seems to work for me: I too take a daily diurectic. Betahistine seems to work for me, too, and the standard low-salt/ no caffeine diet really helps, too. If I have a cup of coffee, my ear feels it within an hour or so. . .feels more full and louder ringing. Benzo's (like Valium) work the best for me for arresting an accute attack of vertigo... .they don't really end the attack. . .but make it much much much more bearable.

    I know some folks who take things like Valium daily. . . and if they do, I'm would anticipate that their symptoms would be minimized somewhat as benzo's act as a vestibular suppresant (in my understanding, preventing the brain from receiving the message sent by the inner ear that says "Hey, I feel crappy!") Benzo's, though, can be very habit forming, so I try to take them only when I sense Vertigo coming on. I'm sure there are a myriad of opinions on this, so I'm really just trying to speak from my own vantage point. There are others who have suffered much more than me and lived with the disease much longer. As I speak about it, I want to do so with a sense of reverance and humility regarding all things meniere's. What might be good/ bad for me might be the opposite for another, so. . . . .

    As I talk about meds, though, please bear in mind my initial post (about my own blunder with meds. . . .which I can't really remember whether or not it took place :mad:). I've got much to learn about this disease. That being said, I'm happy to share whatever experiences I've had with others who suffer.

    Just a word of caution. . . and this is something that I have to remind myself of everyday. This disease can, if I let it, rob my life of joy. There are times when I've grown quite dispondent after a series of attacks. . . .but, by Grace, there are times where life is just great! In fact, the disease can (and I know this sounds strange) help me appreciate the good times in life all the more!! A reality I'm faced with in my line of work on a daily basis is the frailty of the human condition. I see what so many folks go through. . . .and it is heartbreaking. My malady is, indeed, horrific, yet it does, in an odd way, remind me of my finitude and help me savor all that is good about life.

    I'm careful to not let me emotions run too wild on me when I do internet reading. I read alot! and I want to be informed. . . .but I try to do so with as much emotional detachment (regarding my own situation) as possible. Not detachment from other's suffering, that is. When you read on the net, you find all kinds of things. . . .some really great success stories. . . .and some really heart wrenching ones. Regarding the latter, I want them to evoke compassion but not produce mind-numbing fear about my own prognosis. Could the worst case scenario come my way? Of course it could. and in the grand scheme of life, I'm a terminal case anyway (finitie). Terrible things have come to some of my peers already, so I stand with them anyway I can. But I want to live the most I can with the energy and health that I do have! :)

    I'm convinced this disease can be beaten! And I have not lost hope (or when I have, I've found it again)!! For those of you who are suffering today, you are in my thoughts.. .and I don't say this lightly.

    I'm grateful for this forum. Thank you all for giving of yourselves by reading and writing. It means a lot to me :)

    Well, since I can still work, I better do so :) My head is still a bit cloudy from the attack the other day, so plz forgive typos, poor diction, etc. :)

    May Grace be with you all,
  11. dizzy_banker

    dizzy_banker one a good day at the office...

    Thank you for your comments, this is all so new to me and today, I again started spinning and just took a valium so I can try to relax. My optomistic nature, yes...I usually do have one has suddnly been deminished.
    My thoughts and prayers are with all of you who suffer from this lousy disease.

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