Being tired and having Meniere’s disease is quite common especially after the attacks. I spoke to someone the other day and they asked me how I felt after a particularly bad attack. I told them that I would be tired for at least 2 or 3 days after the attack and sometimes it may even be a week before I am feeling better. I also believe that the stress of Meniere’s disease also wears you down. (I’m sure that a lot of folks would agree with that!)
As I have mentioned before I have been going to counseling for the past few months. Along with the counseling I also see a physiatrists’ assistant to monitor my medications. On my previous visit I told the PA that I was having problems sleeping and I also told her that I had sleep apnea (it is very important to mention that whenever you ask for sleep aids) At the time she gave me a prescription for something that would not help with anxiety with also help me sleep. Unfortunately the medication gave me some side effects without helping me. This visit she decided to give me a popular prescription sleeping pill. Let a lot of people I am not entirely comfortable with any type of sedative but I am really getting wore out. I certainly hope that it works.
Is the Meniere’s wearing you out too?
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Hi David - Yes, I am tired and worn out on a regular basis. After an attack I feel as if I've been hit by a train and need to sleep. Unfortunately, or maybe fortunately, my life is not set up in a way where I can rest. I sometimes find a "min-nap" helps a lot, even if it's just 30 minutes. The medications I take a sedating so that is always a battle!
I have a slightly different perspective on this. Yes, I would always be exhausted for days after an attack, but I haven't had a real attack of vertigo plus nausea since last November (a month after my labyrinthectomy).
What I'm finding now is that the chronic dizziness I have is also exhausting! There is a constant need to compensate for the fact that my balance is somewhat "off," and to keep focusing and re-focusing my eyes to make up for the baseline nystagmus I still have. And the more I do, the worse it gets.
I've spent the past month trying to pack up a lot of my belongings and "stage" our house for sale (yes, my inability to hold a job means I am having to sell the house). And I'm realizing that I get completely worn out after only about an hour's work; and if I make myself work for three or four hours, I pay for it in a big way. I will be exhausted for days after that.
It's all incredibly frustrating.
Hi David, I have a bilateral Meniere at an advanced stage and it's actually always very busy in my ears. Both in terms of tinnitus and the pressure I feel. I am continuously very tired. I can remember in the first years I was tired for 2 or 3 days after an attack, over the years the recovery period became longer. Now I have times that I can barely move from exhaustion. Doctors say that nothing can be done. Perhaps others have an opinion on this? I do not use any medication for years and I've never noticed any difference between periods that I have used.
Thank you for your article.
I totally empathize with you guys. I have meniere's but am managing to keep it manageable at the moment. but since a good day for me is 80% of what I once was it is incredibly frustrating and every day is a mental battle to be positive. I hate meeting people and they say' hows it going' and I try to think of something to say better than 'I don't have cancer and I'm not dead'. My current lifesaver to get more energy...my entex p100 pressure pulse machine and it only cost 50 euros. I think this takes my average day from 5/10 to 7/10!
The Enttex sounds exactly like a Meniett device... and if it's only 50 euros, we need those in the U.S.!!!
David...
I share your pain.
You know, I realized that what I often feel is WAY beyond just physically and emotionally tired. (which I am) This is not a normal kind of tired.
I'm also finding that I feel easily confused and overwhelmed...like my brain just isn't functioning on all cylinders. It "hurts" to think, so to speak.
Mostly I feel this the first couple days following an attack, but ESPECIALLY after having 3 or more days of vertigo in a row.
I noticed that I feel considerable body pain too...does anyone else get that?
Geez! Might as well have been run over by a truck...might not feel any different.
I tried explaining this to my Dr. and found it to be an excercise in futility.
Hang in there!
Lauri,
I certainly agreed with you about feeling easily confused and overwhelmed. I feel at times like I am carrying a heavy weight on my shoulders.
David
I concur about feeling easily confused and overwhelmed, as well as the exhaustion and body aches and pains. I think the aches come from the body's constant need to compensate for its inability to balance the way every else does. I also notice that my neck is in constant pain and very stiff, probably because I've learned to hold my head unnaturally still to avoid additional dizziness.
Having Meniere's is way more work than anyone who doesn't have it realizes.
OMG...THE NECK!!
Peggy, I am with you on that.
DAVID ~ are you feeling this too? In the neck?
Is anyone else?..because this has become a big issue for me. Keeps me up most nights.
I've had MAJOR neck pain, stiffness, and like a "catch" where it feels as if the vertebra has slipped sideways, since the Menieres first began. Brings on some nasty headaches too.
I didn't have this neck issue prior to Menieres, and it has continued & worsened since.
Makes sense it would worsen, as not only do the sub-occipital muscles at the skull base shorten and sometimes spasm during my vertigo attacks, but I tend to hold and turn my head stiffly, which is a natural body "guarding" manuever.
In addition, I often hold my head somewhat tilted and turned to the left, as I can pick-up sound better that way in my right ear since the left ear is deaf. (like many of us do)
All makes sense, right?
Check it out though...2 different ENT's I have seen refuse to believe it has any relation to Menieres!! Unreal!
It comes as no surprise to me that they have never figured out a cause for this, as they seem to not want to listen to the folks who actually have it explain what is happening to them.
So frustrating to have so much attacking us from one disease.
I'm just trying to deal one day at a time, and not let it bring me down. :)
I think it would be worthwhile to see a chiropractor about the neck situation, because I would bet that an adjustment once a week or so would help with that. Also, I have given thought to acupuncture for the stiffness and pain, but I'm not sure where to begin with choosing an acupuncturist.
I wouldn't necessarily expect an ENT to know what to do with that, but I'm really surprised they don't hear it on a regular basis. I know my ENT has gathered a ton of anecdotal information from her patients and doesn't seem to discount any of it. Maybe a lot of patients don't mention it because it never occurs to them that it might be connected to MD?
Peggy~Good thoughts.
I have State medical presently and they will not cover any Chiro or Acupuncture, and being unable to work now makes it financially impossible for me to seek that care..but I agree, I believe it is very possible that it could help with some of the symptomology we experience with Menieres.
If you try Acupuncture please post so I can see if it worked for you! :)
DAVID~
On an aside, What is your RSS feed..and how do I go about viewing/using it?
I don't even know what it is.
Thank you!
Lauri
I have had neck problems in the past too. I think alot of it had to do with being careful not to turn my head quickly because it might cause an attack.
Alot of folks find relief with chiropractors and acupuncture, I certainly wouldn't rule it out.
David
Hi Lauri,
I just added a place where you can subscribe by email or you can click on the subscribe to the blog which is on the right side of the page.
thanks
David
Lauri, I wonder what will happen if I no longer have access to my husband's medical coverage through his job. Not a pleasant thought. I think I do have chiropractic coverage, but probably not acupuncture. I will look into the chiro more and see what happens.
David, thank you for that email subscription! I just signed up. :)
DAVID~
I cracked myself up!
I sort of felt silly having to ask you how to figure out the RSS feed business...(like the idiot blog follower who has no computer savvy whatsoever) but I put my shame aside 'cause I wanted to know what it was and get on it.
Then I see Peggy also just joined...now I don't feel like I'm the only one who didn't know what to do.
Glad you made me look better Peggy! Strength in numbers!
Seriously...Thank you for the help with the RSS feed, David.
I'm signed up now too!
Lauri
Happy to help, Lauri. ;-)
On the down side, I'm having a bad week. After eight months without an attack, I've been increasingly dizzy for several days, and this morning I threw up. Not a full-blown attack, but enough to make me cry uncontrollably.
God, how I hate MD.
I'm sorry to hear that Peggy. Hopefully it wouldn't last long.
David
I am still incredibly dizzy, and I'm having difficulty steering a straight line... my legs keep wanting to veer to the left. I took a valium and my husband and I went out to run some errands. Awful. No more nausea yet, but I'm sitting very still now and being careful, just in case.
This raises a question for me: Does anyone else have increased symptoms when it's incredibly HOT outside? I am wondering if it's the heat and humidity making things so bad.
I was told today that I have Meniers, after reading up on it I'm a little discouraged, and some what scared. I drive for a living and that is what scares me the most. Does anyone have any words of encouragement. Just want everything to go back to normal. But it looks like this is going to be my new normal.
Peggy~
I am so sorry to hear you are having issues again!
Since I've recently had full blown vertigo return myself, I can REALLY RELATE to how you are feeling.
Hang in there!
David & Peggy...you may want to check this out~
I just began trying VERTIGOHEEL yesterday.
Honestly..today I noticed that my head feels clearer, the headache is much much less...and I have not had a full vertigo attack for 2 days now.(yea!)
So far I have taken 2 tablets 3xday (dissolved under tongue or in mouth, not swallowed) AM, Afternoon, and PM.
I will probably do 2 more in a little while, as I feel that kind of in and out feeling happening...( on the computer too long) but since it is Homeopathic I don't worry.
I have not had to take any Meclizine or Valium yet.(keeping fingers crossed)
Certainly worth a try for you.
I've read it has helped others, which prompted me to try it.
As to heat...I can't take it, and have not been able to since day one of Menieres.
Not just hot weather, although that's bad, but Any extra warmth.
I keep a window down and vents towards me in the car...I kept a fan on me when I was still working...and I have to stand way back if I lift the lid on a pot of water boiling on the stove. If the steam hits my face and neck, it can be vertigo city.
This disease is weird. Even though I have it, sometimes I just can't believe the oddity of some symptoms and triggers.
Be well everyone!
Lauri, that's really interesting about heat. I have felt for some time that I'm becoming much more sensitive to heat. Weird is the right word, all right.
I'm really glad you are getting some relief from the Vertigoheel... I haven't tried it yet but might give it a shot when I'm done with this trial of the diuretic (triam/hctz). It's discouraging that since I began the diuretic, I actually feel worse, but that could just be the heat wave talking. But I want to let it run its course without interference from another med, even naturopathic. After that, all bets are off.
Shelly, I'm so sorry you've been diagnosed and are stressing about it. What are your symptoms at this stage? I hate to say it, but driving could become a problem if you are having drop attacks or severe vertigo with nausea. When I was diagnosed, I had just been having light symptoms, and they progressed to become awful.
However, you can take some comfort from knowing the syndrome is completely unpredictable. That's the good news AND the bad. For me, it's become a life-altering mess. But I have a brother-in-law who has been diagnosed with Meniere's; He had one bad episode more than a decade ago, and nothing since then. The remissions can be very, very long.
Keep a very close eye on how you are feeling, and take precautions with your diet (cut caffeine, salt, and so on). When I first started getting bad, I began a journal, and then a blog on a local message board, to track my symptoms and treatment. It's been very, very helpful to me to have a complete record.
Good luck. I hope you are one of the really lucky ones.
Peggy, my symptoms started about two months ago. First thing I noticed was a roaring in my ear, sorta like having swimmer's ear, with some slight lightheaded felling. Got up the next day to go to work and went into a full blown dizzy spell while driving. I didn't make it into work, went to the doctor instead and was told that I had a case of vertigo, should go away in a few days. The nose in my ear got worse over the next few days, sounded like everyone was talking through kids microphone. It was the weirdest thing that had ever happened. Went back to the doctor and was told it was an ear infection. Took the round of meds and the ear got some better but it lightheadedness and dizziness did not. I have had vertigo before and this was nothing like what I had before. After about three weeks they decided to send me to a ENT to see what he thought. After the first exam he said he suspected Menieres. So as for now I have lot of dizzy spells, some minor and a few that will put me to bed, lightheadednes, headaches, trembles, though I think that is just my nerves, and my eyes like to do this twitching thing where they move back and forth if I look at something two long. I have had a few falls but couldn't explain how I fell. So after reading all of this things are somewhat starting to make some since, at least now I know why my body is doing some of these things. Looks like I'm going to have a long road ahead of me. Just having someone who understands my fears would help out a lot.
Hi Shelly~
You are in good company here.
We all have Menieres, some of us quite bad.
I've found I get the most comfort, and have learned to help myself the most from others who have it.
The eye twitching you mention I also experience, so don't feel alone in that...and when I have a vertigo attack, then I get Nystagmus, which is where the eyes go back and forth quickly.
I wasn't aware when I first got Menieres that that was what was happening, but once I knew then it didn't frighten me as much.
Read all the posts on Davids blog for help and comfort, and know you are ANYTHING but alone in this.
Many of us take Valium for attacks.
For me..Valium is the only thing (if I take it immediately when the attack hits) that can stop or slow down the vertigo.
I take an anti-nausea med called Promethazine at the same time to prevent throwing up too.
I also just began a homeopathic remedy called Vertigoheel which I am really finding to be helpful. I am surprised at how much.
Some people have better luck with some meds than others. Find what works for you.
Hang in there and try not to let this disease freak you out!
There can be so many different symptoms with Menieres.
Adjust your life as you need to in order to deal with it the best you can.
Stay strong!
Lauri
Shelli, your symptoms do sound sadly familiar. The most important thing now is to find a really good ear/nose/throat specialist who is willing to listen and learn, as well as making diagnoses and provide treatment.
There are other web sites that will give you information about the syndrome and possible treatments, and this blog is a great source of support and a place to ask questions.
Lauri's right: One of the best things to do is talk to others who have experienced it. No one else understands it the way we do.
I wish I knew what to tell you about your job... some people with Meniere's do drive, but I'm not one of them. I will drive short distances, but not go on a parkway or other really busy streets.
Are you getting treatment specifically for the Meniere's now? What are you trying? It's a long road, but not entirely hopeless. And if you find good people who will support you, it makes it much more bearable.
Hi everyone, today is my first foray into your world.
I'm a producer/recording engineer in NYC (where it's been absurdly hot this week, which I can see from these posts might be relevant), and last night I had what I believe was my first attack.
Went to bed, after a week in the studio, feeling completely fine. Around 4am, I rolled over to "spoon" my girlfriend, and the whole room started spinning violently, with extreme nausea coming on as well. I found that if I lay on my back and stare straight up, things calmed down. I called my parents around 8am (both nurses for 30+ years), and told them my experience. They recommended I look up Meniere's disease, and I read about it for the next couple hours (while sitting very still). I've had all of the symptoms in the past year: the occasional ringing in my ear, sharp stabs of ear pain, and "ear fullness"; no attack lasted more than 30 seconds, and I just assumed it was related to my studio work; I began to take greater care with listening levels and ear plugs, and I can honestly say that despite my line of work, I take VERY good care with my hearing.
Anyway, my gf went out and got me some meclozine, which I took around 8:30am. This first attack lasted until around 1pm, then I went out like a light. I came to a few hours later, and have been feeling extremely exhausted since then (hence my finding this post). While I haven't been officially diagnosed with Meniere's, my gut's telling me this has to be the case: I get regular exercise, I don't consume any drugs, caffeine, or excessive alcohol, and I eat really well; all other body systems seem A-Ok.
My question is: after this initial attack, what should I be looking for next? Any signs? Any steps I can take to prevent future attacks (especially in this heat)? I don't have health insurance, so I'd like to avoid a visit to a ear doctor unless this becomes a recurring problem.
Thanks for any help, and I'm sorry for those who are suffering from what sounds like really debilitating cases of this condition.
Alex, sorry to hear about your symptoms. First, I think I would strongly recommend getting health insurance, because if you have Meniere's, it will come in very, very helpful.
There is a thread on this board about the warnings that precede Meniere's attacks, and another that talks about how to prevent an attack, but the fact of the matter is you can't really control Meniere's to any significant extent. You can try to alleviate the symptoms, but not much else.
My advice would be to get insured and see a doctor. DON'T get a diagnosis before getting insurance, because that could create difficulties with coverage down the road.
The worst cases of Meniere's can result in a wide range of treatments, from medication to surgery. It would be smart to cover yourself every which way just in case you need it.
Good luck... as they say, hope for the best, but prepare for the worst. And look through all the old topics on this board -- I think it will be a great education for you.
By the way, Alex, if you DO end up seeing a doctor, I would strongly recommend Julius Kohan. He's a doctor/professor at NYU who specializes in ENT matters and Meniere's. Since you say you're in NYC, he should be close enough for you to visit.
Thanks Peggy! Have felt mostly fine since the initial attack, with a few quickly-passing bouts of dizziness.
Keep it in mind for the future. Meniere's in the early stages is marked by very long remissions. The first year I had it, I only had one attack. And after that, I had several more attacks that were spaced out SO far I thought I just had a recurring virus of some kind that cropped up every few months. It wasn't until the attacks became much more frequent and I noticed permanent hearing loss that I decided to see a doctor.
I hope you have a few relatively trouble-free years ahead of you, or even more. My brother-in-law is my favorite Meniere's story: He had one series of attacks 10 years ago, and then went into remission and has not come out of it yet. He lost some hearing, but otherwise he is fine. Fingers crossed!
So glad I found your blog-had vertigo on and off for the last 17 years, seemed to come on when I would get sick about once a year. I too thought that it was just a recurring virus. Then in April I noticed hearing loss after an attack and the tinnitus, fullness in my ear, vertigo nausaia, vomiting and an out break of cold sweat has been chronic for the last 4 months. went to 2 primary care Dr who insisted it was postional vertigo, an ear infection, (or the way the treated me like it was all in my head) finally last week after a bad attack, called a specialist myself, he did a hearing test and determined I already have hearing loss. More tests on thursday. Always extreamly tired after an attack, I think besides the physical stress is trying to make people understand that even though I might look "fine" I feel horrible days after an aattack, and missing out on activities. I missed my grandsons kindergarten graduation because of an attack. Just been diagonised (finally) so reading your comments is very helpful and encouaging-even if know one else understands.
Hi Tammy you are definitely not alone, meniere's disease is difficult to deal with, please feel free to comment on any aspect of this disorder.
let us know how things are going
David
Tammy, you are right about the invisibility of Meniere's. I hear from people all the time how surprised they are that I'm so sick, because I "look great" according to them. They say it with bewilderment. It's very difficult for people to understand when there are no outward signs of any kind of problem.
That's why support groups and message boards such as David's are so important. It's incredibly comforting to know there are people who really "get it." I hope you find relief from the symptoms and exhaustion.
I wish there was a good way to raise awareness of this problem. I know there are celebrities who suffer from tinnitus (William Shatner for one). If I knew how to reach them, I'd ask for help in spreading the word about Meniere's.
Many symptoms may only result from the way your teeth fit together !
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