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Old 08-25-2006, 07:59 AM   #1
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gloria2936 HB User
Coping

Just curious how one day you can cope perfectly fine (deal with the headache, dizziness, vision, tinnitus whatever the worst of the symptoms are) and then the next day be a hysterical mess, but yet the symptoms remain at the same level. I always seem to have these breakdowns in the morning (typically on days that I don't have anything planned right away: i.e. not having to take my son to school in the morning). I always feel the worst in the morning and hate making plans right away, unless it is something I have to do.

Is there something else going on? Could it now be purely anxiety doing this? I know I still have symptoms. It seems that when I wake up and still hear that darn noise in my head (usually the culprit) it just depresses me and gets me in an uproar as I can't believe I'm still like this, better, but still suffering with symptoms. I never had anxiety or depression before this illness. Anyone who has suffered with anxiety or depression prior to their ear problem experience this fluctuation in mood changes?

Could the klonopin be causing the anxiety at this point? I've been on a very low doseage since August 2005 and am to start tapering off it in September. Has anyone taken Klonopin that actually caused anxiety not helped it?

 
Old 08-25-2006, 08:57 AM   #2
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Wowwwweeee HB User
Re: Coping

Hi Gloria,

If any of us had the answer to this question, no-one would be posting! I seem to be one of the longest "sufferers" on this board, and even after all these years with head symptoms, they can still freak me out, cause me high anxiety and panic attacks, and depress me.

I think for me, it depends on what else is going on with me or around me at the time my symptoms increase, and with that, how my coping skills are (meaning, low or high).

You are right that the symptoms (usually) stay the same - but if something else is going on that is affecting me emotionally or physically, then that compounds how I feel physically and mentally about my head symptoms. For the record, my symptoms do change here and there, and although they are the same underlyingly, new or increased symptoms can really be unsettling and mentally provoking.

And, like everyone else, sometimes I just get plain sick and tired of having to consider my head symptoms when making plans - even the littlest, easiest plans can become tedious and cumbersome when you're head is "off". So, then starts my depression and anxiety at times.

I think people have their ups and downs, and with or without head symptoms, people fluctuate in moods, feelings, and thoughts. But, if you have to add to the "usual" conflict and stress of living, a medical condition that is limiting or impacting, OF COURSE it's going to elevate or lower your moods, etc.

I think life is hard at times, add to that a medical condition that makes things more confusing and frustrating...well, of course you will have good days of coping and not so good.

For me, what has worked well in the past was getting some counseling to better my coping skills, keeping "calm" during the worst of conflicts (related to head symptoms or not), praying (it soothes me), journaling every day (a way to vent about ANYTHING at ANY TIME), and taking care of myself by way of good sleep, good diet, and taking it easy on myself (remember, you will have good days and not so good days - the not so good days can go better if you just accept that today is a not so good day, and work within your emotional and physical limitations until a better moment comes along). I also moved my muscles, and challenged myself on the days that I could, to move forward on something, even if was in baby steps.

Well wishes for a good day. xo

Last edited by Wowwwweeee; 08-25-2006 at 08:58 AM.

 
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Old 08-25-2006, 08:59 AM   #3
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Re: Coping

Hi Gloria,

I have those days too. I know what you mean about the symptoms not changing but having different moods. In my case, even if i feel the same level of dizziness for awhile, i think the frustration of it all just gets to me. I get mad that i wake up every morning feeling bad. I think my problem is, i still wish that one morning i will wake up and it will be completely gone, and am just disappointed when i feel the same as ever. I always feel at my worst in the morning too (especially when i dont get enough - or get way too much sleep), or even if i take a nap, it makes me feel dizzier. It usually takes me at least an hour to even orient myself after waking up in the morning. So if i have something planned for the morning, i try to wake up extra-early so i dont feel as bad when it is time to go out. It is just a huge process for me every morning, and im very tired of it. My symptom that bothers me the most is my vision, it is to the point where i am just so incredibly annoyed that i can't focus my eyes normally. But like you, i feel better, but not BETTER.
I just started to taper away my Ativan, and it is causing me to be dizzier (I asked my PT all about it), so i am a bit dizzier now then i was a few weeks ago. But coming off the medication is the right thing to do if your anxiety is under control. Im not sure if Klonopin is, but i know that the Ativan im taking is a benzodiazapine, and benzos have been shown to slightly highten anxiety symptoms if you have been on them for a long period of time without increasing the dosage. I think this is because of tolerance to the drug.

Last edited by Tiff22; 08-25-2006 at 09:03 AM.

 
Old 08-25-2006, 10:30 AM   #4
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gloria2936 HB User
Re: Coping

"And, like everyone else, sometimes I just get plain sick and tired of having to consider my head symptoms when making plans - even the littlest, easiest plans can become tedious and cumbersome when you're head is "off". So, then starts my depression and anxiety at times."

"I think my problem is, i still wish that one morning i will wake up and it will be completely gone, and am just disappointed when i feel the same as ever."

Yep - both of you hit the nail on the head. I think this gets me the most (besides listening to this noise in my head).

Most days, I do just try and except this is the way it is and go on about my day, but never really enjoy myself. I'm constantly conscience of my situation.

Tiff - the vision at one point (I'd say 10 months to about my 14th month mark) bothered me horribly, then I noticed it improving more and more. It isn't 100%, but most of the time I don't think about it anymore. Wish that would happen to my head noise, but I haven't reached that point yet. Keep in mind there is much more positivity about the vision improvements than the tinnitus. Everyone says their vision gets better and mine was so horrible. I think similar to yours. Crossedeyed feeling with kind of blurriness, but yet you can read clearly. Weird, but mine did improve. Now it is just mostly little splurts of dizziness.

Thanks for your replies. Sometimes it makes me feel better just knowing I'm not alone and that someone really does listen to me and doesn't tell me to just snap out of it. It makes me so angry we have to live like this. I don't care about the comments of well you could have this or that because this is pretty bad. It robs you of you sensibility and takes total controll of your life.

Woweeeee - I have tried all of your coping skills. My therapist after a year, I felt couldn't help me anymore so I stopped going. Perhaps I just need to look into another therapist. I wonder if a hypnotist really works. I have episodes of trauma that has happened along this journey from the severity of head pain to bad situations with doctors. They continue to haunt me periodically. Perhaps that is in the back of my head and is the trigger of these episodes. I really think if I could get rid of this head noise, I'd cope.

"and benzos have been shown to slightly highten anxiety symptoms if you have been on them for a long period of time without increasing the dosage"

Tiff the above statement is interesting as that is what my thought was. Is this klonopin causing the anxiety at this point, I wonder. Klonopin is a benzo. It stays in your system a little longer than Ativan. I have about a week before I start the decline. I plan on doing it very slowly (like decreasing it by a quarter of a pill for a month, then another quarter for another month, etc, etc, etc) I'd like to know how your process goes with the Ativan.

P.S. - Tiff - I managed to take my 5 year old to Kennywood a couple weeks ago. I didn't ride anything for fear of even slightly moving my head wrong and provoking any symptoms, but it was nice to just be able to walk through the park the whole day without feeling too ill. We are suppose to go to Skyblast tomorrow at the Pirate Game (I'll take earplugs, of course). I just hope I can snap out of this by tomorrow. You know it is weird as I use to often wonder if someone sitting next to me felt like me, but yet looked normal. Now sometimes, I wonder if it is Tiff sitting next to me somewhere feeling like myself and you wondering if someone like yourself was sitting next to you feeling the same way. I know, I'm corny, but this stuff did it to me (lol).

Thank you both......Gloria

Last edited by gloria2936; 08-25-2006 at 10:32 AM.

 
Old 08-25-2006, 11:37 AM   #5
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Re: Coping

Hi,

As I read your thread I could relate to everything you said. It is interesting how one day you feel like you can't possibly go on and the next day you have a little more tolerance.

I did have to lol when I read what Gloria said about wondering about the person next to you. I do that all the time. A friend of mine told me that if people really got honest and showed you all their cards on the table, that most of the time you would grab yours back. I thought that really makes sense. She talked about when you look normal, no one has a clue where you have been.

Well, thanks for the laugh. I thought I was the only one thinking this way.

Oh, Gloria, do you think the klonipin helped with the overall dizziness or just take the edge off of the anxiety. My dr. gave me an rx for it, to get things calmed back down before I go on to a new preventative for migraine.

Last edited by cknmbbl; 08-25-2006 at 11:42 AM.

 
Old 08-25-2006, 02:24 PM   #6
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joy78 HB User
Re: Coping

Gloria,
I know it's hard, I've been thinking about that as well. I think that crying about this every once in a while is normal. At least for me it is. I think we cope well everyday but with that comes pushing down the fustrations of what we have to live with. And it has to come out sometimes. Your comment about how hearing that other people have worse things doesn't make you feel better, caught my eye. I totally understand that. Sometimes friends tell me things can be worse and it pisses me off. I know things can be worse but I guess hearing that makes me feel like what I have isn't something that is tough or hard to deal with and that I am just being a baby. But I also can use the fact that other people have their own medical problems as a way to remind myself that I'm not the only person in the world dealing with something difficult. It doesn't make me feel better that other people are suffering but it makes me feel better to realize I'm not alone. It's hard when you walk around everyday and everyone seems so normal, I've wished i felt like the person sitting next to me, but in reality I have no idea how they feel. I look fine, but could be going through a tough decomp and no one would have any idea.

I guess what I'm trying to say is don't be hard on yourself for being upset or getting depressed every now and then, I think it's normal. You have to let these feelings out. I always feel better after a good cry. Let it out, and then try to pick yourself up and move one from it. I really do admire you Gloria, you've been through really tough times and you are making it. Hang in there, and always remember you have these boards to vent at.

Hugs,
Joy

 
Old 08-25-2006, 09:16 PM   #7
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Re: Coping

Hi Joy,

It is good to hear from you.

Anyway, admire me!?!, Geez, not me. I'm not worthy of that honor. I admire those who've struggled with this for 5, 10+ years. They are someone to admire. I guess all in all, we struggle through and do what we have to. Just like you pushing through school (now that is something to admire). I remember being in college and that was hard enough without this crap. I could not imagine sitting in class trying to learn like this. I don't even know how you can concentrate and focus. I can't even think straight half the time (if I was more blond, I'd really be a dizzyblond)(lol). (No offense to any blonds (mine is kind of an ash blond).

You know I think it is just the same old thing every day. My hubby swears he sees a big change in my condition (and deep down, I know I am so much better than last year) it is just hard to see that when it is every day. You just get so mad dealing with it everyday. I really hate those comments too about how it could be worse or I could have this or that. I'm sorry, but if half the people on this board feel even half as bad as what I've gone through, then it is a bad illness and I'd rather have a choice of something else. I can't believe I use to get upset at breakouts of eczema. It seems so silly now to be upset because of a little rash, when things are so much worse and I'd rather be really ugly than be dealing with this.

Funny thing is sometimes when I have a good cry, I feel better. Maybe your right, it does help to get it all out.

How is your tinnitus? Has it completely resolved itself or is it at least still only sporadic? I really feel yours will go for sure if it hasn't yet. From my research most who have it intermittantly, have it go.

You know it is really weird that you had this go totally before and felt fine and then it came back. It doesn't make too much sense; of course, I guess none of this really does. I would kill for a 4 year break although I can't imagine how you must of felt when it crept it's ugly head back into yours. Good thing is that it left you once so it will leave again. When you don't have that rocking/swaying sensation, does your head still feel weird/off? Hard to explain, but just not right?

Well, I better be getting to sleep. At least I get to escape this for 8 hours. When do you start back up at school?

Take care Joy.....It is always nice chatting with you. Wish we lived closer so we could go out together. It would be so much easier understanding a friend with this stuff. I always wanted to head out your way. That is out of the questions now with flying. I have an Uncle (he is pretty old now) that lives outside of LA ( I think the area is Winnwood; not sure I'd have to look his address up.) Hugs - Gloria

Hi Cknmbbl - I'm glad I could make you laugh. I really do that and I know that Tiff is from Pittsburgh too so I think of her every time I'm out. Thinking back to over a year ago, I use to sit in my car crying before I had to go into the grocery store, watching people come out and realizing how difficult this trip will be for me. I wanted so badly to feel carefree and chatty with someone just like these other women were. It is funny how we did things before all this and never thought about it.

As for the klonopin. I am not sure at all if it has helped my symptoms improve or if it is time that has been on my side. My symptoms have definitely gotten better. I can't see how my situation can be migraine, but I do know they use klonopin to treat migraines too so it is hard to know if that has helped my headpain and dizziness. I guess when I taper off, if my symptoms get worse, then I'll know something more, perhaps a migraine variant is going on. I do believe the klonopin helped with my anxiety and depression. It isn't as bad as last year even though over the past few weeks I've been feeling really down, but that could be alot of things, particularly the fact that summer is ending too. (I really hate winter and freak out about colds/viruses now after having this ear thing.) Good luck on the klonopin. Let me know if the migraine preventative helps your condition.

Best of luck - Gloria

Last edited by moderator2; 08-26-2006 at 06:06 AM.

 
Old 08-25-2006, 10:14 PM   #8
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joy78 HB User
Re: Coping

Hi Gloria,
Good to hear from you. You are someone to admire, you have been through a lot, don't discount how strong you are for dealing with this.

It's funny, sometimes I think that having school was a blessing. It made me function even when I just felt like staying in bed all day. I think in the end having school was good for me (even though the stress of it I think made things worse). I'm hoping that with the challenge of school, I will get stronger. I think I am lucky in that when I feel fine, my head feels good too. The worse part of all of this was the tinnitus. It drove me the closest I have ever been to a panic attack. I really thought that it would just get worse and worse, and I wouldn't be able to hear anything anymore. Which now looking back on it, was ridiculous. I just didn't know. It has gotten better. I stil hear it now and then, but seem to be able to cope in that I know it won't last too long. Hopefully one day it will leave. But I feel grateful for it getting better and can honestly say I could live with it the way it is now.

It really was a punch in the stomach (for a lack of a better way to describe it) when this thing came back out of nowhere. As soon as the room started spinning, i just knew what was going on and I couldn't believe it. I cried for a week straight. Freaking out, I couldn't believe I was dealing with this nightmare again. But from this relapse, I learned a lot. I learned that I have some permanent damage and that even though I will feel bad from time to time, I can feel good. So, I really believe deep down that one day, it will go away and I will feel solid for a good amount of time. I feel like if I did it once, I can do it again. At least I hope so. I'm doing okay now, and hopefully have been threw the worst of it. We'll see....

It would be nice to see you, and see someone who can really understand what is going on. I have a friend whose husband had Labs a couple years ago, and his went away for good so far. He does understand how I feel and it was nice to be able to talk to him about it. I wish you lived closer and that we could get together, but I'm glad to have met you even if it is over email.

Hang in there, take one day at a time, and remember it's healthy and I think completley acceptable to have a good cry every once in a while. you have to push yourself and make yourself live your life as best you can, but i think part of dealing with this is getting your feelings out, and for me the best way to do it is to let it pour :-). Between my ears and the stress of PT school I've become a pro at crying.. hee hee.

Have a good nights and hopefully I'll hear from you soon. Take care and I'll keep good thoughts of your recovery with me....

JOy

Last edited by moderator2; 08-26-2006 at 06:06 AM.

 
Old 08-26-2006, 02:14 PM   #9
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Tiff22 HB User
Re: Coping

Hi Gloria,

it is so nice to hear that you spent the day at Kennywood! im not sure how i would do there yet, its one of my goals to get there by next summer. my boyfriend wanted to take me there this summer but he sort of stopped in the middle of asking me to go - he pretty much knows the drill at this point, haha. i really hope to get there next year sometime though. i didnt get to any pirate games this summer, i was just to afraid of how i would feel, but i am definately going to get to some penguin and steeler games this fall (NOTHING will stop me from getting to those games, lol).

i know what you mean about wondering if other people feel the same way you do when your out in public. i think the same way, lol. i have 2 sisters around the same age as me, who are always going out on the weekends. i try to go out with them now as much as i can, but sometimes i avoid it just because i feel bad that i dont have as much fun as i would usually have. i spend more time thinking about how dizzy i might get rather then just trying to enjoy myself. and i usually want to go home early because the dizziness always gets to me.

good luck with coming off the klonopin. i started to decrease my ativan a few months ago, i just dont want to have to rely on it anymore. i became a little bit dizzier (a lot more lightheaded then i've been in awhile) for about 2 weeks recently, and i talked to my PT and she said it was definately from reducing the ativan. she said it suppresses a lot of the symptoms, and told me that i would feel better, and to NOT increase the ativan again and just push through it. she was right, i dont feel as bad now, except for the vision, but that is always bad.

joy - i think going to school helped me out so much this summer. yes, the stress caused it to be worse at times, but overall i think having something that MAKES you have to go somewhere and do something is a good thing. my mom tried to convince me to take a year off, but i told her, if i didnt have school, i would probably spend most of my time just laying in bed complaining. at least school distracts me from how dizzy i really am at times. i start again monday, the 3 weeks off went by so fast!

 
Old 08-27-2006, 09:47 PM   #10
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Re: Coping

Hi Tiff,

Glad the side effects from weening off the Ativan seem to be dying down. I do believe the vision will get better with time as every one says that and I am living proof that mine has improved so much from last year. I still have some little bouts of blurriness, but it bothers me less now than it did all last year.

Hey, did you hear Wilson from the Pirates has been out the last four games because of dizziness? They diagnosed him as having inner ear infections which I would assume they mean labs. He is not taking anything because his doctors advice was that it would slow compensation. I wonder who his doctor is here in PGH?!? I had to search for 9 months before I even found a doctor who heard of labs here. It will be interesting to see his progress and when he plays again.

Good luck back to school.....You too Joy.

Will chat again.....Gloria

 
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