On Saturday I woke up with my ears feeling very full. (they normally feel like I have wet cotton in them, but this was worse.)
I noticed I kept having to ask my husband to repeat himself. (even more often than usual)
These should have warned me, but I didn’t listen. For the past few months, it hasn’t been unusual for me to have these “warning signs” with out the full fledged attack that follows.
But I was feeling pretty good! We decided we’d make a trip to the grocery store. I got dressed, and was sitting on the couch while we finalized our shopping list…and the world moved. I got some Valium and Phenergan in me, but decided a trip out wasn’t the best idea.
Things settled down, and I settled in for a day of drawing and relaxing. (forced relaxation, but relaxation all the same) Stuart decided he’d mow the lawn. (perhaps I should say, our mini-jungle….it’s been a while since it was mowed, and it’s rained a lot.) He put his cell phone in his pocket on vibrate so he could feel it if I should call and need him. I was drawing…relaxing…then I moved…I can’t remember what I was going to do, perhaps go to the bathroom, do something for the dog, get a drink? I have no idea…but I started to feel bad…really bad.
I called Stuart’s phone…nothing. I called again…nada. I knew there was some medication on the bar in the kitchen, if I could just get there. I grabbed my walker and started on my journey…of just about 8 feet around the couch and to the bar. I didn’t make it. But I made it to the window and Stuart saw me. He walked in the door, and I hit the floor. He got me some medication, but it was too late. (who knows it may not have worked this time anyway.) I didn’t feel that bad, really. I felt like I was having a mini-attack, but would be fine. Until I started to get off the floor. I couldn’t do it. I tried to crawl to the couch. That wasn’t happening either. So I lay there behind the couch clutching the carpet…and I panicked. I tried to stay calm, but the world was going crazy, and I couldn’t get off the floor. Then the vomiting started….and a headache from hell! Stuart said, “I’m calling an ambulance.” I said “NO!” (oh please, not again, a trip to the ER where they can’t do much…or don’t do much…just not again.) Stuart was concerned my CSF pressure was dropping too low. I told him to call Dr. Gray.
Luckily, the pain and the attack didn’t last very long. (less than 2 hours I think) I dozed off for a couple of hours. When I woke up I was so tired, wanted to brush my teeth, and felt like I smelled like vomit. We cleaned me up and put me to bed. That’s when the terror set in.
I was absolutely petrified to go to sleep. I didn’t feel quite right, and I didn’t want to wake up having an attack. But it was more than that, I don’t understand it really, but I was scared. I was also very afraid of being alone. If Stuart moved, I panicked. Was he leaving? Were was he? I was terrified, and it wasn’t rational.
Since then, my headaches have fluctuated between moderate to severe. The day after an attack, I always have digestive issues. I end up in the bathroom a lot. Every time I had to go, my head would explode.
Stuart and Dr. Gray emailed back and forth, and talked on the phone. She said to give it a few more days, but she thinks I may be a rare case. Someone who really has high pressure, but has “blow outs” and by the time she sees them their pressure has dropped because of this. She treats them for the low pressure, only causing more “blow outs”. (Please note that I’m getting all of this second hand from Stuart, so I can’t explain it very well.)
I have a question for my fellow Meniere’s sufferers. When I end up throwing up because of an attack it’s much worse than when I’ve thrown up because of other things. (like the flu, food poisoning…or having a bit too much to drink..) It’s violent. I gag so much, I can’t breathe, it’s so scary. My stomach hurts so much, and I constantly feel like I have to go to the bathroom too. This time I had such violent spasms that my jaw popped. It was so painful, my mouth was trying to open further than it should.
So my question is: Does anyone else feel that when you get to the throw up stage during an attack that it’s worse than other times you’ve had to throw up?
I swear it’s so horrible I would do anything to stop it. All I want to do is die during these attacks….just make it stop.
Why can’t they fix us? Why can’t they at least figure out how to control the symptoms? I know my doctors are working on it…but I’m having a hard time just watching life pass me by while I wait for someone to help me.
Don’t get me wrong. I’m very grateful that I had nearly 5 months of being virtually symptom free. This is the first severe attack I’ve had since January! I’m very happy about that, and it does give me hope.
I am also so very grateful that I have the support of my husband. I have such respect for those of you who have to endure this without help. I had Meniere’s before I met Stuart, but it’s gotten much worse in the past few years. I have been through attacks alone. It was terrifying…and at the time I didn’t know what it was.
Stuart really helped during this attack simply by talking to me the whole time. Telling me how much he loves me. Repeating soothing words over and over. I honestly think this attack would have lasted longer if he hadn’t been there to help calm me down…and take care of me.
Picnic with Ants 
This is the most frightening thing I have ever heard. Not being able to control anything sounds absolutely terrifying. I hope Dr. Grey can come up with something. And I know how you feel about the ER, I hate to go too. You lose all control when you are there, sometimes it is just better to be in your own house.
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Oh Mo, Thank you so much for your compassion. You made me cry…having someone who doesn’t have Meniere’s voice those words. Just the acknowledgement over whelmed me.
Thank you again wendy
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Wendy,
HOLY COW! You are a very strong woman! I’ve been to the ER twice since 09 and it stinks.
I hope you feel better soon.
Janice
P.S. How great is Stuart! Sorry for all the !!!!! but WOW!
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Thanks Janice. I’ve been to the ER twice for the Meniere’s. The first time was before I was diagnosed, the ER doc was the first person to mention the possibility of Meniere’s to me. They couldn’t do anything for me but wait…I was so dehydrated they couldn’t find a vein. It was torture. The second time was last year (I think). It was a rough attack..it felt wrong..of course they all do, but I was hallucinating during that one. (not bad, I just kept seeing things in my peripheral vision that wasn’t there.) They gave me a ton of anti-nausea meds, and Valium…and I was still throwing up..they finally said, “with as much medication as we’ve given you an elephant should be asleep…but you are still throwing up…” It was heart breaking. So – I will avoid the ER if at all possible.
I will say, I didn’t feel strong. But I’m still here….and trying….and hoping. wendy
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Oh, my gosh! How awful! I despise going to the ER for anything. They’ve never proven to be helpful in the least and, usually, we’ve been met with rude and inconsiderate staff. I’m so glad to know that Stuart was able to take such good care of you. Isn’t it just the simple things, like being talked to through an attack? It means so much and does so much more than they even know. Hugs, sweetie, and I hope you’re feeling better! ❤ xoxo
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Thank you Lin, You are right, I too have never felt like the ER has ever helped me. They were all nice…but unhelpful. Stuart is a dear. I don’t like feeling so dependent, but lately I’m very scared to be alone for very long. I might feel fine one moment and then the next — Bam! I’m on the floor.
I keep meaning to write you. I know you are going through a rough time, and are ready for all of your tests to be over and get some answers. I hope they can answer something soon…and be able to fix it! thinking of you. wendy
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I hope Dr. Gray is getting closer to an answer. Sometimes there’s so much ruling things in or out that it feel like you’re getting nowhere. At one point, I was told I was an enigma. I don’t want to be an enigma. Like you, I want answers. I don’t think people understand, and I’m glad they don’t understand, how scary, disheartening, frustrating and frightening it is for the doctors not to be able to help us. There’s so many news stories about progress with different diseases. In some part of the brain, I know that the research and testing has taken years and years. I know there is research and testing different ways to treat and cure ear diseases, but I rarely hear anything about it. It’s infuriating.
Just want to be normal again.
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Maureen: Yes! I just want to be normal again! I want answers. And I don’t want to feel like I bought a car for no reason, wasted $2000 on a hearing aid for my left ear….and planned for a future that will never come. I feel like I’ve been in bed for months now.
(well just bitch about it Wendy, that will make it all better….ah! Tell me to shut up sometimes.)
My headaches have been better today…still there, but better. Tinnitus has been worse, but seems to be leveling out now.
Now I just have to get up the nerve to actually do something…and see if it makes it worse.
I did take a bath tonight! Well, with help. But I didn’t get worse afterward! (I often do) Sounds like a very small thing…but I’m thrilled.
Oh and all I can think about is eating….why does my brain think…”well eat something, you’ll feel better.”?? Must have been something I was taught at an early age.
: ) wendy
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Maureen, your comment about being an ‘enigma’ reminded me of something my and Wendy’s neurologist said. We saw her twice in a week a while ago after my strange episode, once for Wendy’s regular appointment and once for me. I don’t remember her exact words, but as we were walking out she said something like “I wish one of you could have something easy” 🙂
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Thank goodness for your positive attitude! I know you are feeling negative, but really, you come across as positive. Those of us who know what you just went through, and even those who don’t can certainly imagine, just how AWFUL it is. I had an appt yesterday to try for the 3rd time to get rid of my bppv. He sent me into vertigo ever so briefly and I thought I was going to toss my cookies right there in the office. Thankfully it subsided quickly but I was so nauseous I came home and went to bed (sitting up of course as I will have to for the next week). There I was feeling sorry for myself, all the while you were so much worse! Feel better soon my friend!
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Oh Deb, you have every reason to feel sorry for yourself right now. This BPPV has been kicking your butt. My attack didn’t last very long…thank goodness. Well, the actual throwing up part didn’t last that long…but we know it takes a lot out of you. I hope this treatment works and you can get rid of this BPPV for good!! xo wendy
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It’s not just you with the stomach concerns Wendy!! When I am having a spell… I almost hesitate to call what I feel nausea sometimes, as that almost seems to normal or tame! It seems my whole digestive system just goes haywire… I am so bloated I honestly look like I’ve gained several pounds, or am pregnant! It is almost like the pressure builds up until it HAS to come out of me somehow. It is painful sometimes, as you mentioned…. It is definitely different than having the flu, or food poisoning etc. I really think it’s something all it’s own that happens to us during attacks!! As usual, you’re not alone, and it is nice to know I am not either!! Glad to think you are feeling better now…. I’ve just some off a few rough days in a row, I am at work today and actually very glad for that!!! Nice to read the supportive comments : ) xo
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Katie, Thank you so much. I really needed to hear that I wasn’t alone in these feelings. It’s just so much worse for me, than what I would think of as “throwing up”. I feel like my whole insides want to come out….and will any moment. It’s so painful!
I’m glad you are feeling better. And able to work! Woo Hoo! I’m better. Yesterday was better than today. Today I have a nagging headache, and wobble head. (I told Stuart I am a Weeble to day…hopefully I won’t fall down.)
Still enjoying my art though. I’m so happy I’ve discovered how much it can help. I was so frustrated with it before…I couldn’t do things I used to, I would get so upset…now, I’ve decided to just go with the flow. If it’s not what I intended…then I decide…that’s what it was supposed to be!
Life can be different, by just changing the view.
hearts to you wendy
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So glad you have found renewed positivity from your art Wendy!! Awesome.
Don’t worry I am a Weeble today too… I’ve walked in to a few things, and walls already! Luckily I don’t think anyone caught me… they’d think I was drunk! Oh, how much more fun it would be to be drunk…. haha
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Katie, Yes! Or at least a little tipsy. I’ve never been able to get “drunk”, after the tipsy stage I’ll start throwing up. I’ve often wondered now that I know about my ears being so messed up, if that’s why. If I started to get a little bit dizzy when I was drinking…that was it. (glad I learned that early.)
Hope today is less wobbly. Not for me…and headaches too. ugh. thought the other day was a turning point…guess not.
peace my friend. wendy
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