Ok....so we get better with time; but does it ever really go away 100%? Symptoms have improved, but here I am, all of us are, still dealing with this crap. There are so many working components in our head (bodies) that just about anything can go wrong; thus that is why just about all of us never really know what happened to us.
Names pop us years down the line and the people say, I'm still dealing with this or that. Subs and Lizzy33 were the only two really that said they were fine now. If people get better, I just don't buy that they don't come on the boards to tell the others hey, I'm fine now stuff. If there are people out there like that then they were never really friends to anyone on this board because I could not imagine not coming back to this board to tell everyone that I am 100% fine and just like my old self and that it does go away.
I'm just so tired of this. A year ago, I remember saying to myself, I wonder how I'll feel a year from now. Here I am at that point in time and while I'll admit I'm better, I still feel this crappy stuff and it still rules my life. Maybe not as much as last year, but it still does. And why do I have this damn noise in my head while most others don't?
I'm just really tired of try this try that. Give it time it will go away. Geez, how much time? It has already taken over a year and a half to this point. It is heartbreaking to hear that people like Scott, CL, Hbep and others have had this for years. My son's growing up before my eyes and I feel so helpless and it is so unfair that I can't enjoy him like others get to enjoy their kids. It makes me angry that some mothers complain about doing this or that with their kids when they are 100% totally fine and feel well enough to do so. You don't get time back and you only get one chance at life.
I have found myself once again starting to research this crap, wondering why I'm still not feeling 100% and driving myself in circles and making myself crazy again. I was starting to deal with it. You know, just learning to live with it like CL said in one of her posts. Having a higher threshold for it. I just don't understand how you can never have any problems, not even a headache and then catch a cold (which others I caught it from are fine) and then end up like this for a year and a half. I took care of myself and was healthy just like most of you, prior to this stuff.
I'm sorry if I have depressed anyone, but really needed to get this off my chest. Not much help talking to anyones else as no one that doesn't have this problem really understands. Some days I feel like I would be better off if a bus just hit me than waking up to another day of dealing with this.
Maybe a walk will do me some good. Thanks for listening. I just feel really frustrated today. Perhaps I shouldn't even be posting this, but I know there are others thinking this, but just not saying it.
Sorry to hear you're feeling so bummed out by this at the moment. I get these moments too - no question there. But I have say that even though I have never been 100% I know I can get very, very close again as I have many times before - so close that it won't matter if I'm not exactly as I was before.
If anything, the SSRI has shown me that there is a way to get there and that something else must be at play. At the moment I am now very into this whole migraine variant idea. It can explain why some of us just seem to go on and on with this. I really think you should have a crack at this. I know you're afraid of trying meds but at the end of the day we are the only ones who will ever be able to sort this out. We can get tons of advice from the best clinics around but I think we have to grab the bull by the horns, be brave and try whatever it takes. The silver lining in my anxiety disaster 2 years ago (and having to take an SSRI) was that it showed me how a med can clean this up substantially. It's also given me some hope that it might be some sort of migraine thing. At least there's a chance that it can be completely sorted. I really don't buy that this goes on forever or that VRT is always the silver bullet particularly when the dizziness has not changed for years. The more I research migraine and its variants, the more I see just how common it is and how it can arise from labs and VN.
Given that Adam has now tried some 14 different meds and is still here to tell the story, I think we've got nothing to lose by trying. He'll be back online soon but I'd chase up the neurotonin if I were you. I may try Verapamil first when I get home.
I feel exactly as you described in your post, fed up and depressed.I was doing quite well the past couple of months, still ill but battling on! I am now having a huge setback and feel as crappy as I did a year ago.I have a constant headache, nausea and dizziness with a feeling of internal motion.All my colleagues at work think I have recovered, because I smile ,joke and look normal.I could not feel any worse.
I am at that point where I'm thinking, whats the point? I hate living with this constant dizziness.I always have to think in advance of whether i can meet friends, in case its a bad day.I'm only 23, started a new career a year ago and 3 weeks into it I get labs! On top of this my mum gets cancer and dies within in 2 months, on June 9 2006.
My year and life could not be any worse.I sometimes think what have I done in my past to get whacked with this junk.Its such a ******* of an illness.Everyone has told me time will fix it, well the months and years are going by and Im still not better.More and more i'm begining to think Im one of those cases who never really shifts it....I know some people can live with it, but not me.
I cant tell you what I would do to be rid of this ****.
I pray everyday to just be normal.I really hope we all finally kick this...we have been punished enough.
There are my thoughts.
Scott- I am also looking into the MAV diagnosis as potential for me not compensating.I will take any drugs in a chance to get rid of this.Nothing to lose after a year of this junk.
I know how you feel as you have read many of my posts.. I have been there. It is a very frustrating illness that tests our patients and we all can have breakdown..I have been doing great and would say if not 100% very close. I am going on this almost 3 years and a very long time. The MAV drug Verapamil has really helped or time has. I know it is hard but the one thing I try is this condition is no different than a lot of other like Diabetes etc.... There is no Cure but there a lot of things that make it more manageable. VRT, Drugs and other things make it very manageable. There are people like Subs who get to 100% and others who get close and do not get to 100%. Others who unfortunately have less success. You have made a lot progress and have not exhausted a lot possabilities. . The reason I bring up diabetes is it runs in my family. there is no cure but with a lot of medications you live a fairly normal life . However there are times where you are miserable and have to adjust medication or diet. stay positive and remember their are other possabilities. You have made a lot of progress....
I read your post and can totally relate. I have 4 kids and feel like I am totally missing out. My kids are 16,14,7 and 5. I am relying alot on my older kids as my husband travels. My younger kids are always asking to go to the park or swim or whatever. My answer is always the same. "I just can't today" I hear all the stuff other people are doing and can't wait to be there. I am my own worst enemy because I'm scared of the drugs that can help. Even if it's not 100% recovery 80 or 90% would be fantastic. At the same time I feel so gratefut that this is not something so much worse, because God knows it is out there. I think this illness takes so much courage to face. That is a area that I am lacking in, but I think how strong and grateful I will be when I control it instead of the other way aroung. You have to keep faith. Hang in there. Thanks for your post. It reminds me that we all can really help and support each other, because we "get it".
snap, me too! three years on and I can't see life ahead without this in my life. There isn't a day goes by where I don't regret getting this thing and feeling frustrated that my life is not the same as it used to be! What makes it harder for me is that I was ill for a long time with lupus and then I had three good years and thought yes life is good and then wham, I get this! I still haven't driven, I'm too frightened, get horrible panic attacks at doing anything outwith my limited routine these days however, I did my first trip to London and stayed overnight by myself which was a real breakthrough for me. The stress leading up to the trip and the stress whilst I was away mind you wasn't worth the whole exercise but I did it. I've got that horrible fluid feeling back in my ear where it feels like something crawling inside your ear, I HATE it and can't get rid of it.. so I've got the nausea, tiredness and dizzy lightheaded crap back, great! My whole life has changed beyond recognition and I am no longer hte confident happy girl I used to be. I just got married and it was a fab day but a struggle, I worry now about having kids and what kind of impact being pregnant has. I too, fear every day incase this thing comes back. On hte positive I would say I'm at 80%, I just can't crack that last 20. My lifesaver is this board, I know there are others here who understand, can sympathise and listen and that is worth more than anything... well apart from getting better but its a pretty close second
Rascal -- I am sorry to hear about your mom... Thats a terrible terrible thing, and cancer doesnt play any favorites... I lost my father 3 years ago to Cancer.. I know what you are going through. Your too young to lose your parent...... We all are at any age... But keep their memory alive by remembering.
Things may seem bleak, but as the past has shown, you will overcome this again... You were posting a while back that you were feeling MUCH MUCH Better and that you were enjoying life again. It WILL happen again... Believe me.... And the pain from losing your mother will get easier as time goes on... Time heals things..... Even things you dont necessarily want healed.
Well I don't know if i's the weather or something but from what I've read, some kind of overall decomp hit us all this past few weeks...
I posted a loon MAV post, trying to find out some answers too, and from what I've read in all cases, yours, Rascal's, scotts', well, I can't tell for sure if either we all got MAV, we all are decompensated, or what, I'm in the blue now.
If I went to this boards a year ago... well I'd tell you that this truly goes away in 5-6 months top an you can get a normal life with just minor, minor upsets...
Now this year is a whole different story, either a relapse(my doctor didn't finde evidence of this), a huuughe decomp(6 months now), or MAV(my latest suspect), well I wouldn't be so sure or positive.
This junk is awful, not even when I gor constant MIgraine attacks in my teens(wich got me the suspucion of MAV), I felt so horrible, this beats anything easily, even as it is not a life threatening illness, it sure gets your life at whole...
But even as I'm in hell right now, answering your question about if it really ever goes away, think it does, becasue even in this year's awfuly enduring ill state, I could tell you that I got 5 days without it, completely at a 100%, even with a cold, even with evereything, and I would give everything to know how that happened, to do it again and to stay there forever.
Unfortunately, the people in wich we have to trust to get us out from this, the doctors, most of the time are as confused as us, specially if they're not Neurotologysts, and even some of them... So we have to rely in some miracle, or at least get adn give some support in here, hoping to find an answer wich could help us all.
I know attitude, activity, VRT and all that helps, and in some "mind distracting events" like a do or die situatiosn or (as you may know) watching the Steelers win the Supe Bowl, well teh body kind of compensates, at least to the point in which this can be quite toerable, specially if we try to forget this junk and keep on living..
But of course this turns difficult when you feel dizzy, or can't even walk straight, or even thought clearly..
The positive thing here is that, unfortunately again, we all share too similar symptoms, with some specific things to eah one's case but, very simiar, wich means that when someone gets somethign to get better, chances are that it might help us all.
Since there's still no final word written on this, all of what we share in here eventually could help to get some the definitive answer wich will cure us all. As I wrote this MAV post to get feedback to take some questions to my next Neurotologyst appoinment, in search for some usefu knoledge both for me and for all of us..
From my hellish, deppresing, current state, I'd only say "Keep it up", no matter what, this ain't over till is over, and we're still in the fight.
My sincere advice is to just continue to give it time. This is what I do. It is absolutely amazing how bad some days can be. I suffer from hearing loss, tinnitus and fluid imbalance causing dizziness. As I have stated on this board, it is from an autoimmune disease and I am getting ready to start chemo. I am not looking forward to it but I am hopeful.
I am 56 and have 5 children, the oldest being only 18. I have a terrific wife, whom I adore, but we have a tough time. Between raising 5 children and having this issue, especially at my age......... Nonetheless, I have a job I love although my energy goes fast. I exercise daily and I try to be patient.
Please know that I trust that you will feel better and that you will have the patience to remain calm in the face of adversity. There is always hope.
I'm so sorry you're feeling so low, I'm afraid feeling this way goes hand in hand with ANY long term illness. All I can say is that I, too felt as you do many, many times and I can only say again that it DOES get better, I promise. You have to try to stay positive and I know how hard that is. You have said that your dizziness has improved, that's great! Think back to how you were and how you felt 6 or 12 months ago and compare it with the way you feel today - improvements, however small are fantastic. I know it is very easy to slip back into researching, researching and more researching but what good will that do apart from depressing you even more??
I dont have much time now but will pop back shortly and I'm happy to answer any questions - please try to stay focused on getting well - this horrible illness has a habit of wearing people down and understandably so but you can beat this - I'm positive of it.
Lizzy! So good to hear from you! You really help bring things into perspective and give us all hope!
Gloria....I know that this post from Lizzy has got to help. You are probably even already feeling better from whn you wrote this post.....usually those deep dark depressing moments from having to deal w/ this all the time creep up on us and we can't escape it......but what I always tell myself is that it soon shall pass and I will find myself on the upward once again.
Also....you can't compare yourself to others ever. I know how annoying it is and feel the same when my friends will complain about stupid little things like a headache....or whatever common normal aches and pains....when they have absolutley no idea what we are going through in our heads every day.....you just have to do what is best for you and don't compare yourself.....everyone has their own set of problems....ours just happens to be a doozy. Whenever you go through a rough patch.....do something that you know will make you feel better.....take a walk, a bath, read a mindless magazine, watch a tv show you like.....just take your mind off it. I know how hard this is....I am so up and down that I drive my boyfriend crazy. Just focus on Lizzy's post and know that it is possible to get better.......do not research the negative. You will be okay.......
Oh....and try the lipoflavinoids for the ringing in your ears.....I have been taking them for almost a year.....while I still have the buzzing sound.....it is not quite as bad.
Hey sorry to see you on here again and having a tough time. Im not surprised it gets you down though, its such a terrible thing - I have a friend who had breast cancer and she actually said she would rather have had that than what we have had.
But remember how far you have come, and although we will probably suffer in a way for some time to come it will get easier and easier over time. It does seem that this thing doesn't go away completely, but i do believe we learn to deal with it better and it interferes with our lives less and less. You are doing so well but equally this is a big difference and we are all bound to get fed up now and again. the best thing is to share and talk about it though.
Hope you are doing better now. I had my op to remove the coil today, need a couple good night sleeps, but not doing too bad. Looking forward to getting back to normal now.
Anyway take care, Ill send you some jokes in the next few days
Thanks everyone. You all are the best. I never thought I'd be posting a crazy post like that again, but I guess I let this stuff get the better of me over the past week. I'm just so tired of not feeling normal even on the better days, I don't feel 100% like I use too. It is so frustrating. I do believe most of my anxiety/depression is not coming from the bits of dizziness or vision stuff and I think I've gotten pretty use to having chronic head pain and pressure, but I freak out so much when I get this occasional buzzing feeling in my head and the tinnitus just drives me to the edge. I know I should not be complaining after reading my journal entries from last year (took Lizzy's advice and looked back to a year ago) and how awfully sick I was and how horrible the dizziness and brainfog and even the physical pain was. I really think I could move forward if it wasn't for this tinnitus .
I still don't understand how it could possibly be the MAV thing with me considering my situation (Neuroto doesn't think it is either). Stargrave/Lizzy - you are so right how we get so caught up in the research and just want to fix it as no one else is doing it for us. You just go in circle and drive yourself crazy. I was doing better with this for a few months (I think because I put the research behind me and didn't concentrate as much on this) and then I got into the routine again as I still wasn't the old me fully again and starting up again with this MAV. I suppose I shall see what happens when I start to come off the klonopin in September. If it gets worse again then should I assume it is probably migraine and the klonopin was helping in that respect and if I ween off it successfully and nothing changes, then I can assume it is nerve damage and time that is healing it?
Howie, I agree with you to one extent. This illness is NOT manageable. My eczema is manageable, my thyroid problem is manageable, my farsightedness is manageable, but this head stuff just is not. I even experienced a little bit of gestational diabetes in my 8th month of pregnancy and that was manageable through diet. I did not feel like this with any of those medical problems. I think 99.9% of the people with this can agree, this is not manageable. I still love ya for trying to cheer me up and am so happy to hear your almost 100%. I'm crossing my fingers it stays. (Can't wait to see more pictures of that little cutie.)
Thanks to the rest of you who lended some caring support through the past rough week.
Lizzy and Subs - thanks for popping back in to see how I am doing now. I've been a little better the past two days (better today than yesterday so maybe tomorrow will be even better). Lizzy are you totally free of this stuff now 100%, even during that time of the month? From my memory of looking back at your old posts, didn't you have headache and heavy head feeling too? (You and Subs are so appreciated for hanging around. From the bottom of my heart, thank you. I wish if there were other recoveries out there, they'd pop in too at least to just say they recovered. I don't expect support and research from them throughout this (as I'd like to get as far away from this as I could), but how could anyone abandon us sufferers after knowing how hard this is?
Dizzyrascal - I'm so sorry about your mother's passing. It is hard enough to deal with that in itself let alone doing it feeling like this. Incidently, my father passed away June 9 too (1997 though, I was 24). When I read your post, something hit me and perhaps my breakdown was something building up inside of me as the day I wrote this post was the anniversary of my sister's passing 5 years ago. She was only in her 30's. I think bad luck follows my family. I've begun to question the existence of a higher being as my brother was in an auto accident at the age of 18 and is a paraplegic. My sister passed away in her thirties and now me with this. I wonder where does it end and how can someone (God) do this to innocent people? (What about little kids who suffer from cancer and other horrible illments. You just really begin questioning this stuff.
Tesss - I was wondering how you were doing today. I hope it will all be for the better. Lots of wishes for you feeling better over the weekend. I'm looking forward to those jokes. You come up with some good ones. I loved the big cups at the company party (hahaha). I'll chat with you next week as I want to know how your others things are going.
Again, thanks everyone. Your words of wisdom and encouragement really helped. I'm trying to once again, take one day at a time and get back into that more positive attitude I had the past few months.
Last edited by gloria2936; 08-11-2006 at 09:01 PM.
Yes, in answer to your question, I had the heavy head thing but it wasnt really accompanied by a headache as such - it was more a feeling that my head was too heavy for my neck, if that makes sense? I do remember a tingling/buzzing sensation across my forehead too. The main symptoms for me were disequillibrium (never had spinning vertigo, just an off balance sensation), ear fullness, nausea (for first few weeks) and slight tinnitus. I can honestly say that I dont notice any of those symptoms anymore whatever the time of month, up until a few months ago I could still get momentary disequillibrium if I swung my head round too quickly but that seems to have resolved now. I cant say I think about it anymore Gloria, I'm just so thankful that I feel normal again. A couple of years ago, I was in the depths of despair wondering if my life would ever be the same again, it is (with all its other ups and downs) - yours will be too!
Stay focused and stay off those medical sites, they have a habit of scaring folk to death.
You're a sweetie for posting back to me so quickly. Yes I know what the heavy head feels like. I bought one of those neck pillows because sometimes I just feel like I don't have the strength in my neck to hold my head up. So glad to know that you don't even feel blips around that time of the month either. I know you said your tinnitus took about 14 months to go so I still am holding onto that hope that it will eventually go for me. (I hate reading things that if it isn't gone in 6 months or a year then it won't go. I try to keep in perspective that if they don't know what is causing the noise then how do they know it will not go. Also, I know of a few stories of people that had it longer than 6 months, like yourself, who had it go too.)
I'm going to try to get back into the routine of not reading into so much and just try and take it day by day again. I wonder sometimes if the klonopin is causing some problems too even though I am on a very small doseage. Side effects say headache, blurred vision, dizziness, mood swings (I know I had all this before I starting taking it eight months into this, but who's to say those symptoms now are from the klonopin.)
Anyway, again thank you. You don't know how much your posts have helped me when I've been at my lowest. There is not one day I don't think about you to keep my strength going. Maybe because you've had it a long time and feel good now and aren't one of those lucky ones who had it for 3 -6 months and then it went. Makes this condition more promissing to go!
Hope your future life brings you only goodness after going through this for so long.....you deserve it.
Glad you checked back in here, it made my day!!!
P.S. - For a few months when I was coping better, part of it was your advice. I started searching other things on the internet and shopping on ebay. I think it really helped to divert my mind from research. Thanks for the tip.
Sounds like u don't think this junk is "going to leave the building"
Gloria---this thing is going to go----ur brain will make it---leave---what this thing---brought with it will go also,i.e., ringing,disequilibrium, etc.----while---for a few---it does not----one way or the other---for most it does
---in evolutionary terms---it has to---ur brain can not/ will not consciously(reason for searching) or unconsciously give up----ur basically-----along for the ride----while its being worked out---as we all were/are----for u----like most it will get worked out---some things---speed it up(VRT,etc..)some slow it down---but the brain never gives up---it's a product of evolution---a survivor----and---perhaps--- a/the reason---we are all---hanging out/around---still
---it is kind of cat and mouse---now----with the brain trying/testing/creating/repairing neural pathways---to handle/adjust/coordinate any sensor deficits---remaining/caused by this junk---so the trajectory is not always up/linear---but it is always happening---awake/asleep, whatever.....the brain can't stop---it self---which can cause some pretty crazy stuff!!
While it is being worked out the/our role is to stay informed, adjust, stay aware of our progress(slight/great), get second opinions, & persist---buying time.
---while the best(and I mean the very best) Doc's can(perhaps) lend a hand-----they are not much more then "spectators" at the present time with this junk---its your "oar in the water"---that is/will be/was the deciding factor!
---we all are aware/know/have seen---the limitations of modern medicine(awful--Huh)---yet---most of us make it---loopy brain outputs---low points along the trajectory/modern medicine, etc..---notwithstanding.
Why this junk is called an "Inner Ear" injury---is beyond me---while it may start there---it sure as heck does not end there!!!!!!!!!!!
Location: Manitoba, Canada in Riding Mtn. National Park
Re: It never really does......does it?
Just popped in to see how things have been going for everybody - I've been mostly staying away and trying to deal with this "stuff" on my own. I'm so sorry for everything you've been going through lately. It's truly a condition that can drive you bonkers, but I still agree with Subs that it will get better. It has to. You've been so strong - for yourself and others - and you'll conquer this thing. Now just happens to be a time for you to allow yourself to be compassionate with yourself, as you have been to so many others. I'm glad that you have made the choice to share and get support - I'll be thinking of you - positives coming your way ...
So good to hear from you. I sent a post to you a few weeks back to see how you were doing. Thanks for the good well wishes. They have been helping. How is the MAV treatment going; helping at all?
Subs - Your words of wisdom really helped. I've been reading your post over and over and started to feel better again or at least mentally. You're great with words....you should write a book. Everything you said made sense; now I just need to convince my brain of it. Thank you for the support and caring words.