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  • Question for Scott re: dealing with the bad days

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    Old 12-15-2005, 05:41 PM   #1
    dizzyblond
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    Question for Scott re: dealing with the bad days

    Scott,
    I have so appreciated this board throughout the many months that I've found comfort, information and advice on it - and probably like so many others, though I don't have as much time to post these days, I read the board daily. I had a conversation with you last summer regarding benzos. (I'd been using Restoril nightly, until reading a post that informed me it was a benzo. I began the withdrawl process and have now gone three months without it, except when traveling.)

    Though I can see I've been making some headway, this past couple of weeks have been very difficult - I feel like I've stepped back about 5-6 months in my progress forward. I know so many here know exactly what I'm talking about - after experiencing some relatively decent days, it is incredibly discouraging to have the symptoms "screaming" in my head again. Unfortunately, my schedule is now such that I don't really have the luxury of slowing down when it hits, so I have to go through with the day's activities, spinning, nausea and all.

    Here's my question: One of the doctors I saw at the time of my diagnosis offered me a script of 2.5 valium, telling me that he had many patients with unresolved disequilibrium issues that took it daily. I refused it back in May, telling him I was determined to fight it with the VRT and did not want to hinder compensation. Well, here I am, 6 months later, now finding myself reconsidering his offer. I am SO SICK of feeling this way - oh, everyone here knows this miserable place - the place of having started to noticed improvement, getting a small taste of that place called "normal," only to be dragged down to the pit of misery again!

    The reason I'm addressing this to you is because in prior posts you mentioned taking the low dose of Valium on bad days. What about bad weeks? Bad months? Would it be slowing the compensation too much to simply treat the sypmtoms on a daily basis when you've hit a rough patch, no matter how long in duration that patch might be? Sometimes I can almost taste my desperation for normalcy again - and I have to admit, on those days I almost don't care what I might slow down by what I might take, I just want to be able to "do" life!!!!

    Thanks for listening to me go on. I'd appreciate your insights, and anybody else's, for that matter! I do hope all is well on the Australian front, and for everyone else, as well - may the holidays be filled with the hope that we've each seen the worst of this!!!!


    Take care,
    Robin

     
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    Old 12-15-2005, 06:25 PM   #2
    gloria2936
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    Re: Question for Scott re: dealing with the bad days

    Hi Robin,

    I've been having a really rough time myself for almost a week now. I guess we really are on the same schedule.

    I just want to tell you my experience with Klonepin which is a benzo. I was very hesitant on taking it at first as I'm a bit peranoid with drugs to begin with considering this nightmare started for me after an allergic reaction to an antibiotic which eventually lead to an ear infection and now this. Anyway, I saw a neurotogist at the end of July. I didn't take the prescription for 2 - 3 weeks afterwards as I knew it may slow my compensation and I just didn't want to try another drug. Then, I felt desparate and tried it. Three weeks into it I noticed a slight change in my headaches (don't know if it was coincidence or time). Then my neurotogist increased my doseage slightly again at the end of October. Again in a few weeks, I noticed my dizziness going away and lately an improvement in my vision. I take a very small doseage and I can't say I'm feeling great as I'm not, but I do believe it has helped me with the dizzylike feeling and perhaps is helping with my vision. My ears still feel funky and I've had a lot of pressure in my head and ears lately, but definitely noticed improvement in the headaches, dizziness and perhaps some improvement in my vision lately.

    I can't say it has helped with my anxiety or depression because I've hit the roof this week. I'm not telling you to take it, but at this point in time, I like you feel like trying anything that could maybe return me to normal.

    I'm so sorry to hear you haven't been feeling well either as I was hoping you were on your way to recovery. It is so hard to keep your chin up with this stuff. I'm hoping for a Christmas miracle too.

    Take care of yourself - Gloria

    Last edited by gloria2936; 12-15-2005 at 06:27 PM.

     
    Old 12-16-2005, 08:17 AM   #3
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    Re: Question for Scott re: dealing with the bad days

    Hi Gloria,
    Thanks so much for "dropping in!" I'm so sorry that things are rough for you right now, as well. This is no fun... and makes all of life so difficult - especially Christmas! I was thinking last night that so much of making the holidays "happen" falls on women's shoulders!!! Add present buying, wrappping, mailing, menu planning, food shopping and entertaining on our already vestibularly-challenged shoulders, and whew!!! A prescription for decomp? Maybe!!!

    Thanks so much for reminding me about your exp. with Klonepin. I remember that you'd been prescriped that and wondered if the neuro. said anything about how long you were to take it. Do you take it symptomatically, or just every day, regardless of whether it's a good or bad day? Is it something that the dr. will eventually wean you off of, or has that not even come up? And what about the issue of hindering compensation? Does the low dose allow the brain to keep on learning? I am curious about the difference between Valium and Klonepin - if they're both from the benzo family, why might one be better than the other?

    I'm so sorry that you're still dealing with the ear and head pressure issues. Other than that horrible headache that you and I've talked about, I've never had any of those types of symptoms. Is this something that you never experienced until you were initially hit with the VN/labs thing? The only time I experience head pressure is when my allergies are acting up, but a simple decongestant takes care of it - I'm sure you've tried EVERYTHING at this point!!!!

    Well, here's to a merry Christmas - I surely hope that your symptoms subside enough to allow you to enjoy the holidays with your family!! That would be a Christmas wish come true - more and more days filled with less and less vestibular symptoms!

    Hope you have a wonderful weekend - we're supposed to be going to the coast tonight to spend the night and celebrate our anniversary. I'm so hoping it will be a decent day in the vestibular department!!!!

    Talk to you soon - take care,
    Robin

     
    Old 12-16-2005, 09:15 AM   #4
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    Re: Question for Scott re: dealing with the bad days

    Hi Robin,

    I take a very low dose of klonepin daily. I take one tablet at night (.5 mg) and a half tablet in the morning. That is the lowest doseage, I believe, it comes in. I was told that small doses of Klonepin have proven to help in vestibular disorders. We haven't discussed stopping it as he increased the doseage to the above amounts at the end of October. To be honest, it wasn't until I tried the klonepin (a few weeks into it) did I notice an improvement both times. I am suppose to do the vrt as well. I suppose he will talk to me more about it at my next appointment at the end of February. He mentioned that if there isn't improvement by then, then he will order an ENT. He's ruled out Meniere's as well as he's done the Rotary Chair test and nothing really showed up on that test either so who know's what the ENT will show. I also had another scan to check to see if the bone between the inner ear and skull was thinning but it came back negative too.

    I absolutely never ever had any of these symptoms, head pressure, funky ears, tinnitus or anything else going on in my head prior to this ear infection and virus. I rarely ever even had a headache and if I did it was either from doing too much and being stressed (tension). I know something went wrong either from that allergic reaction I had from the antibiotic last December or from the virus/ear infection or the surgery to drain it. This monster came on about 2 - 2 1/2 weeks after the ear infection so I really believe it has to do with that.

    I believe klonepin is in the vallium class of drugs, but not really sure how it differs from other vallium meds. I do know they use to us it as an old anti-seizure med and it is used for other things like schizophrenia and panic disorders. Somehow it has been used successfully in vestibular disorders.

    I am pretty certain that it has helped me because the first time I took it within three weeks I noticed a change in the severe headaches and now with the increase in October about 3 weeks later, I noticed the dizziness subsiding (my dizziness was never the biggest problem with me however, I just always felt strange in my head and a little spacy with very bad brainfog in the beginning) and recently, I've noticed improvement in my vision. My vision is still slightly goofy but much better than it was all summer.

    It can't hurt asking your doctor about it. Do you see an ENT or a Nuerotogist? I have to run to my therapist appointment so I got to go, but just wanted to mention that Scott posted some information about the use of Klonepin by I believe it was that Dr. Hain. It may be under my post to Scott or check out your old post regarding taking the vallium that you posted a while ago. Let me know if you can't find it and I'll dig for it.

    I'm slightly better today and will check back later as I promised Jill some information from Dr. Andrew Weil regarding her thyroid and feel bad as I haven't posted it all week because I was feeling really bad.

    Take care and feel better - Gloria

    P.S. - I don't believe it has hindered any compensation for me and to be honest, I'm at the point where I don't care if I can get any relief from this stuff. I don't even care if it shortens my life span if I can feel a little better now.

    Last edited by gloria2936; 12-16-2005 at 09:19 AM.

     
    Old 12-17-2005, 02:44 PM   #5
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    Re: Question for Scott re: dealing with the bad days

    Hi Gloria,
    Thanks for the info - after a really bad month, I think I'd have to join you in your opinion that even a shortened life span sounds preferable to this stuff!! :-))
    I wish I was seeing a neurotologist. There isn't one available in my HMO, so I'm stuck with an ENT who probably hasn't read all the info those of us on this board have. That's why I like to go in prepared with as much information as possible. I think he must inwardly cringe when he sees me with my pages of online research in hand! Though several other drs. that I've seen have actually appreciated me passing it on to them. So, we'll see!!! Hope you are feeling so much better!
    Hope the weekend is going well!
    Robin

     
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