I stated at the end of my last post that I thought the patches worked this time, and I was better. Yes, my hearing is still down, and I’ve been having headaches, but I hadn’t been having vertigo.
That all changed Wednesday.
I woke up feeling like I was catching a cold. My ears and nose were all stuffy, my throat was scratchy, the tinnitus was a bit loud, and well, I just didn’t feel good.
I went down stairs and had some breakfast, took my morning meds, and still, just didn’t feel good. Kind of icky.
I decided to jump on the computer, answer some emails, do a post…. I was in the middle of answering an email when it hit me…the world started to move. (Sorry Susanna, I promise I’ll finish my email to you soon.)
I’ve described one of my Meniere’s attacks before, however, since this is the month for National Health Bloggers Posting Month, and NaBloPoMo, I thought I’d go over it for anyone who might be reading for the first time.
The last time I told about an attack, someone said it was the most terrifying thing they’d ever read….this attack was worse…much worse. (fortunately, this time Stuart was close by, so I didn’t have that panic of being alone and not being able to care for myself. I’m thinking I should do something so I’m prepared if this happens when I’m alone…an emergency kit type of thing….a bucket with, emergency meds, wash cloths….)
As I mentioned I was answering an email, and the world moved….I slumped down on the couch and grabbed for my vial with Valium and Phenergan (for those who might not know, Valium helps control vertigo, and Phenergan is for nausea). Soon I could tell this was getting worse, so I also had a Phenergan suppository. (They often work faster, and you won’t throw it up.)
It was getting worse, I had the hot flush that’s a tell-tell sign that things are going downhill, fast. Or, rather, things will probably be coming up soon.
Every time this happens to me it terrifies me. I’m always afraid it won’t stop. That I will continue to have this horrible vertigo, forever…. I’m so out of control, and so very, very sick. If someone wanted to torture someone, just make them go through one of these attacks, I promise I would tell anyone anything they wanted to know.
I couldn’t focus my eyes, I normally try to have a focal point and do stress reduction techniques, but I couldn’t keep the point in focus, and things were getting worse, the vent in the ceiling began to move across the ceiling, the TV was tilting….. and I had to go to the bathroom, fast! Not to throw up…if you get my drift. It was a rough trip to the bathroom, and when I got back, it got worse. The world started spinning out of control. All I could do was hang on and ride it out…(that makes it sound much easier than it is…it’s hard…very, very hard.)
I started throwing up. Each time I wretched, I wet myself. This is something that has never happened before. (I have had a little pee come out before, because of the intense pressure from throwing up…but not like this.) I was lying in a pool of my own urine. So horrified by what was happening to me, so humiliated. At one point vomit came out of my nose…if this has ever happened to you..I’m so very sorry. Oh how it burns, and you can’t get the smell out.
This attack was different from any I’ve had before, things would start to settle down, then they’d start spinning again…about 2 1/2 hours after the start, I feel asleep. That has always meant that it’s over. But within minutes I was awake again, with the dry heaves were even worse. Finally, things stopped spinning after about an hour later. However, I was still sick to my stomach. The nausea was horrible, and it burned so bad. My head hurt so much, but I was afraid to take anything for it, for fear it would make my stomach feel worse. Again, I had dry heaves, but this was thankfully the last time. Then the diarrhea came again….and again. (this does not normally happen, I do often have it at the beginning, but not after the world stops spinning.)
Through out all of this, I was hot, then I was freezing, hot, cold, hot, cold. I would shiver from cold one moment the next I’d be sweating profusely from the heat.
I rested for a while, absolutely exhausted, but my head hurt so much I couldn’t sleep. I drank a lot, thinking the headache may be worse because I was dehydrated. (after all, I’d been throwing up way past the point of anything being in my stomach, and had diarrhea 3 times.) My head still hurt. I ate a little…and just rested. Finally, I felt I could take something for my head, and it helped, but it didn’t go away. I thought I could finally sleep, then my muscles started to cramp up, my back, my stomach, my whole body had been through so much, my muscles were fighting back. I just wanted to sleep. I took a pain pill, and rested.
Again, I’m so very grateful that I had Stuart here to help me. This was a very scary day, and he was there by my side doing everything he could to make it easier. It makes me cry just to think about how much he must love me to do these things, and to reassure me over and over that he doesn’t mind….”don’t worry, I’ll clean it up.” I cry and say I’m sorry, he reassures me…it’s ok, there’s nothing to be sorry about. I know seeing me like that is also terrifying for him. He does all he can, but he can’t stop it, we have no control over what is happening, and I’m in so much pain. The throwing up until all you do is gag and it feels like my body is trying to turn itself inside out through my mouth…it hurts….oh…it hurts. Instead of showing this, he sits by me and says calming words over and over, like Calm, Peace, Love….the repetition and concentrating on the words, what they mean, it helps. Sometimes it helps more than other times, but it doesn’t hurt.
Often during these attacks, I think…I just want to die. I hate my life. This is not a life.
This time, I started having those thoughts, but I stopped, and kept saying, I accept this part of me. I still love myself. I have this disease that randomly punishes me for no reason, but that doesn’t mean I’m bad. It is a part of me. It’s not what I am.
I can’t say this would work if I had to go through this every day…or even multiple times a week (like I was doing in December and January). That was a dark time. I’d like to think I could handle it better now. But, I’m just not sure.
So, I guess I was wrong. The last set of patches may not have worked. I just don’t know what to think now. Things were so good after the treatment the end of January, why isn’t it working now? I need to have a heart to heart with my doctors and see what my choices are. We may have to reevaluate our plan of action.
This post was written as part if NHBPM – 30 health post in 30 days: http://bit.ly/vU0g93, and is also a part of NaBloPoMo.
Picnic with Ants 
Wendy,
I”M SO SORRY you had to go through this. As I read it I felt queasy as I often feel at the mere suggestion. This just isn’t right and I feel so bad for you. Are there any doctors, ANYWHERE that are specialists that might be able to help you? I would be happy to research some if you want help. I feel sad that you had to go through this and grateful you have a loving and supportive husband. Please rest now and don’t do too much. Very gentle hugs being sent your way. Love, Laurie
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Laurie,
I’m seeing some of the best specialist on this issue. My doctors at Duke are wonderful. I’ve been in a research study trying to find a cause for this, and a solution. It looked like it was working for a while, but now…I just don’t know. I really have to talk with them and see if I want to keep trying with the research (seeing how abnormal cerebrospinal fluid pressure affects vestibular functions.) Or if I should move on and try another treatment.
I’m thinking I’m going to try something else. Perhaps in conjunction with the study, but I just questioning things a lot right now.
Thank you so much for offering to help.
I know it isn’t “right” but, like so many of these diseases, it just happens, and there’s limited things that are known about it. I’m grateful I don’t have doctors who just say, “sorry, this is it, you have to live with it.” They are trying. And they care. I’ve been very impressed by them so far. This is simply a very complicated, and unpredictable disease. I haven’t given up. But I’m realistic. This is a chronic disease. It’s a part of me, but it’s not all I am. I have to keep reminding myself of that.
hugs to you!
wendy
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Oh Wendy…. what a terrible spell. Sounds go awful… and I can relate to a lot of it!! I am so sorry that you had to go through all of that. Thanks for your honesty in sharing with us, your really are braver than you know.
I know how incredibly hard it can be to be hopeful, or positive in any way, especially in the throws of a spell. Sometimes I feel like my mind works differently when I am having an attack, like I can’t reason myself into thinking anything very positive sometimes, but I guess that is just a testament to how horrible what we go through is.
Try to remember that the attacks and horrible feelings are not your life, they are just something that happens to you. Something that you cannot control. Those moments of weakness curled on the bathroom floor do not define you – but the courage that you show to keep going does. I know there isn’t a whole lot I can say to help, but sending positive vibes your way! xo
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Katie,
Thank you. I hate that anyone can relate to it, but am comforted in to know I’m not alone. (that kind of sounds horrible doesn’t it. I’d never wish this on anyone, but I’m glad to be able to share, and get support from others who go through this too. However, If I could make it go away for everyone else, and bear the burden alone, I would. It’d probably drive me crazy, but I would.)
I am hopeful, and I try hard to think positive things during the throws of an attack, but like you, I sometimes feel like my mind works differently during the attack. It’s terrifying, and until it’s over, we are so at the mercy of it. We are defenseless, and so vulnerable. Not sure where I was going with that…but I hope you understand.
I do try hard to believe, this is not my life….but in a big way for the past few months it has been the biggest part of it. However, it’s not who I am. It may take over my life for a while, keep me in bed, make me feel crappy…most of the time. But I’m still me inside.
Thank you for the compliment. Sometimes I feel very courageous, sometimes, not so much. I just want to curl up in a ball, cry, and give up….but I can’t do that. I won’t!
If this story can help anyone understand a little bit more about what we go through, then it’s worth bearing my soul. Or if it helps someone else who has this realize, they aren’t alone, there are people who understand, then I’ve done a good thing.
thank you for all your support, and friendship.
xo
wendy
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Wendy…I’m so sorry. I am crying as I write this and my daughter is asking me what’s wrong. “I’m reading about what happened to my friend Wendy”, I tell her. I hate being where you were. I hate it with a passion. I do know exactly where you were. I’ve been there so many times I can’t count. The same events, from the moving ceiling vent to hours of anguish over or on the toilet. Cold, hot, cold, hot….then sooooo cold that my whole body would convulse with shivering and shaking (that’s actually the point where I think its almost over). I need a heating pad to be close to comfortable. I want to take it away for you..as you say, you don’t wish this on anyone, especially your friends! I hope you are feeling better today.
Hugs,
Deb
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I cry realizing how many of my friends have to go through this horror too.
I wish I could take it away from everyone.
If I knew my suffering was relieving someone else from having to go through this, I think I could bear it better.
to better days.
wendy
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More words of comfort coming your way from a sister spinner! The only thing that keeps me hanging on through an attack is that, at least so far, they eventually end within 8-12 hours. Yes, everything around you moves. The worst for me is when I feel awful whether my eyes are opened, and trying to focus on a focal point, or closed. I open them. Nope, that’s worse. I close them. Nope, that’s just as bad. And, yes, the hot and cold spells!! My poor husband has been woken many a night to first get me more blankets, then a while later to open a window and turn on a fan.
My dear friend. Sigh. It’s like Alexander and the Terrible, Horrible, Very Bad Day. Except we could call it the Terrible, Horrible, Very Bad Disease. Where would we be without humor?
Have you ever considered IM Streptamycin? I know it’s not a cure for all the other symptoms, but it’s supposed to control the vertigo when you’re bilateral. Granted you have to rehab your balance… I dunno. I can’t control my desire to want to help. Even though you just had a great post on the subject of what not to say! Lol!
Here’s to some relief for you (and Stuart, too!).
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Wendy,
As I was reading what was happening to you, all I could think of was me laying my hands on your head and have everything stop so that you could feel better. I hate it when our bodies betray us like this. Feeling helpless and out of control is hard for anyone, but when it’s our body that’s doing it to us, you just want it to stop.
I hope your doctors have some other ways to help you. Have they mentioned other options or treatments for you?
Sending love and positive energy and healing your way.
Maureen
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Your attack mirrors some of what happens when I get a serious migraine — but my world doesn’t spin. I know how awful I feel when the vomiting part of the migraine hits, and your head is exploding. This summer I had 2 really bad attacks where neither of my migraine meds worked and yes — when it’s bad, I get vomit coming out of my nose, too. I deal alot with nausea, and I can only imagine how much worse it must be with a Meniere’s Attack.
I can’t imagine how scary it must be that the world is moving. I thought of my worst migraines and added a spinning world — just the thought made me queasy.
It is a good idea to drink lots of water when vomiting like that; I ended up in the er one time because my migraine lasted for several days, and I was dehydrated and hadn’t been able to keep down anything, including my meds. Now, I try and sip water. When I can keep that down, then I try to get down some of my meds. I have no internal thermostat, so the hot, cold, hot sounds familiar and can be part of a migraine attack. I imagine you and your drs. have explored the migraininess of these attacks.
I really hope this was just a slight deviation from the “feeling slightly better” pattern you had been in.
A keeper is someone who will not only fetch the bucket, but empty it too. Stuart is obviously a keeper!
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Phylor, Oh yes, Stuart is a Keeper! I’m blown away by how much he helps me.
I do have migraines, and that’s one reason they were exploring the abnormal CSF pressure with me. But it seems not to be working now. I sent an email to my docs, and we are exploring other options.
I’ve had a migraine so bad today, that I almost went to the ER. Finally, it gave in some…but I hurt all over from so much trauma.
I hate that you have migraines so bad. I get them too, not often that bad, but some times it’s pretty bad….and scary.
My head was killing me through this attack, the last 2 I’ve had horrible headaches with them.
I’m rambling. thank you for feeling so for me. wendy
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Wendy, I read your other post first…I commented on that one not knowing that this happened. Yes…it is the scaiest thing I have ever heard of. While I was reading this I thought you were going to say that you had food poisoning or something. That Stuart needs a big hug…he is great. My hubby is great too, but he gets so visibly shaken when I get sick that I wish I could just hide. I hate this monster that takes over your life.
xoxomo
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Awww. Mo. you made me cry again. thank you. wendy
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Just read some comments regarding Meneres disease. My sister suffers from MD and I feel helpless with what she have to go through. Hot flashes, getting ice cold, headaches, spinning and the list goes on and on. If anyone try a treatment that work please let me know. Thanks.
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Earlene, it’s very kind of you to want to help your sister. Meniere’s is a harsh disease. Everyone with Meniere’s has the same main symptoms, but we often don’t respond to the same treatments. Some find relief with diet and lifestyle changes. Others will need more destructive treatments. and some will not respond to any treatment that is available to them. That said. The first line of defense is a low sodium diet and stress reduction. I got a lot of help from Vestibular Rehabilitation Therapy. It helped my balance and I have had less vertigo since then. (I do keep up the exercises)
Steroid injections in the ear, help control vertigo in some. Gentamicin injections are an option for some, however, it is a more destructive procedure, and they rarely use it on people who are bilateral. I’m assuming your sister has it in one ear?
I think the greatest support you can give someone with Meniere’s is your presence. We have so many people disappear when we get sick, having someone in our corner is a godsend. The fact that you are doing research and trying to learn more about her illness, says volumes. It’s a scary disease, and feeling alone, makes it so much worse.
If you’d like a list of resources, let me know. Mind Over Meniere’s has a good resource page. http://www.mindovermenieres.com/the-ultimate-list-of-menieres-disease-links-and-resources/#comment-1995
If I can do anything to help, please reach out.
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Any update?
I too have been “diagnosed” with menieres. Started in the spring when i caught a cold in mexico, and had what i thought was an ear infection. Dealt with terrible hearing and ringing on and off with various treatments like an antibiotic and antiviral round and week of steroids. For 3 weeks it got better, worse, better.. then bam! One day i got home from work, sat at my desk and the world started spinning. I thought i was dying, i was violently vometing and shivering for an hour alone before i called an ambulance, and let my wife (who was at work) know what was going on.
Then i got destroyed for 2 or 3 months, after almost 3 months of what can no be described as light symptoms. I appeared to have randomly had my first ever shingles bought, and the shingles where the least of my concerns. I had vertigo bouts for hours and several times a week. I had shivers and felt sick for weeks and weeks. Constantly felt hot and was sweating profusely. Between barfing and laying down i tried to get nutrients into myself and keep them down, but ultimately lost 10lbs, and im pretty slim to begin with. I also appeared to be clenching my jaw at night, probably due to inner ear pressure, and suffered sever tmj and neck pain for weeks.
Im still to this day feeling the reverberations, tho the vertigo has been slowly more mild, and the last few times ive been able to not barf. I very often feel a buzziness and a heaviness in the top of my head, and my balance is always sub optimum since these dark time.
Anyways just wondering if this sounds familiar at all with anyone, or any tips.
Ive cut out alcohol and coffee, reduced salt and sugar heavily… But always ate pretty healthy. (I miss coffee a ton tho). Used serc (pretty useless) and basically live off gravol. Cant wait to get back to my life.
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I’m sorry it’s taking me so long to get back to you. I’m away from my computer and it’s really hard to type much on my phone.
As soon as I can I’ll sit down and write back.
In the meantime, the short answer is, I’m better than I used to be. 😊
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Hello D. Lo,
I’m very sorry it has taken me so long to get to your comment.
I can tell you what I’ve experienced and have learned over the years, but always remember, I’m not a professional.
Now that I’ve gotten that disclaimer out of the way. hahah Let me address your comment.
How were you “diagnosed” with Meniere’s? Was any vestibular testing done? These test are quite involved, you would know if you had them. (things like having warm and cold water or air put in your ears, following a light in the dark….I was even put in a rotational chair in a light proof booth and was moved around while following lights with my eyes. Yes I threw up.) This tells them you have a compromised vestibular system, and it rules out many other conditions.
You should also have an MRI.
If your doctor did not do these things, I’d request to have them done. You want to make sure this is not something else.
That said, if you have the classic symptoms of rotational vertigo, tinnitus, fluctuating hearing loss, and aural fullness you probably have Meniere’s.
You mention starting to spin with a cold, but then mention a time a week later when you were at your desk and had a severe attack, I assume the severe attack was not your first attack.
For me, when the Meniere’s first started I had a severe attack, and didn’t have another for a year, then another and a long period, then another, and a long period (not a year each time there, a few months.) Then I had a horrific attack that lasted all day, non stop vomiting and that sent me to the ER, (I do not go to the ER unless I think I’m dying)
It was after this that I was diagnosed with Meniere’s, and it was at this time that the attacks started coming more often. But they did calm down again after a year or so, until I went bilateral, then all when to hell. but that is my story, we are focused on yours.
What you describe about your experience at your desk and for the month or so afterward, is what i would expect from a Meniere’s patient.
The months of hell you went through after having shingles, is severe. That is odd for someone who hasn’t had Meniere’s for long. I can’t help but think that the shingles made your Meniere’s go crazy. There is some thought that some cases of Meniere’s are viral, much like shingles, if this is the case, I can see why your symptoms would increase with the shingles outbreak.
With your balance being compromised you may benefit from Vestibular Rehabilitation Therapy, but if doesn’t work for everyone with Meniere’s because of our fluctuating symptoms. It really helped me. Before I had it I was using a walker all the time for balance issues, now I only use it on bad days. Yes, I still have bad days, but I have severe attacks only about once a year. I often have mini attacks, they only last a few minutes, but can be quite disturbing. I still have drop attacks now and then, but it’s much better too. I also have Migraine Associated Vertigo, and sometimes it’s hard to tell if my vertigo comes from my ears or my head. I still have a bit of disequilibrium all the time, but it’s better. I still have bad tinnitus, but for the most part, I’m used to it. I have lost my hearing, I have Meniere’s in both ears. I progressed very rapidly after I went bilateral, I was having vertigo on a daily basis, it was a dark time. Now I have cochlear implants, I can hear with them. I do not live in silence.
The fluctuating hearing loss is not uncommon. and after each attack we normally lose some of our hearing permanently, normally in very small incriments. Let me stress that most people never loos their hearing completely. I didn’t really notice the hearing change for years, until it started happening rapidly.
Have you tried diuretics? that is often one of the first treatments. Valium is the go to for vertigo, it is a vestibular suppressant, and can really help. You don’t have to take a lot, and only when you have a vertigo attack. I take it when at the first feelings of an attack. Some people are afraid of Valium, but if you take it as you are prescribed, you shouldn’t have a problem.
Tips for handling vertigo. Put your feet flat on the floor. I feel better when I lie down, but I always put my feet flat on a solid surface. We balance with 3 things, our ears, our eyes, and our body. When we put our feet flat on a surface it tells the brain you are not really moving. Your eyes and ears can’t be trusted. Try to hold your head as still as possible. The more movement of my head, the dizzier I get. If I press my head against something, it helps. Just knowing my head is not really moving. I have found that focusing on an object about 18 inches from me is much better than trying to focus at a distance. I also chant possitive words or phrases that calm me down. I tell myself I’m not really moving. I’ve gotten to the point that I can just lie there and watch the world spin 110 miles per hour and just be bored. I don’t always throw up now. When I’m like that, my husband will read to me. it helps get my mind off things. If I can’t focus on him reading, we will try to sing a little, something I know very well that I can focus on instead of what is happening. I have a Tibetan chant that I say over and over, it helps me. I know it will end. That is the most important thing. Know the vertigo attack will end.
Oh, the intense heat you mention is not uncommon for me when I’m starting to have a vertigo attack and sometimes I will have one out of the blue, but I’m a post menopausal woman, so I’ve always thought those other hot spells were part of being a woman. Granted I had Meniere’s long before I went menopausal, but again, I still thought it was part of being a woman.
Based on what you have told me, I’d look into the Meniere’s and the viral connection. it’s very hard to find a doctor who will treat it that way. It takes a lot more antivirals than most doctors are willing to prescribe without proof that this is what is causing it.
Also, you mention having migraines a lot, you may want to see a neurologist and discuss vestibular migranes, you also need to mention that you feel so much pressure in your head. TMJ can also cause vertigo. Anxiety increases vertigo. That’s a bit of a circle there huh? Vertigo causes anxiety, anxiety causes vertigo…ahhh.
Well, that’s my take on things and part of my experience.
If I can help in any way, please reach out.
again, I’m sorry it has taken me so long to respond to your comment.
wendy
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