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dizziness and it came back

Posted , 7 users are following.

vanessa69
vanessa69

I was doing so well with the dizziness was feeling about 70percent; and then just this week I started getting dizzy again.its not a spinning feeling just off balance some! I have been doing my exercises and are helping! Will this ever go away eventually? So tired of it...

2 likes, 27 replies

27 Replies

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  • Terry6872737
    Terry6872737 vanessa69

    Posted

    I have found that you will have ups and downs with this stuff resolving.  Usually these setbacks are milder and short in duration.  Keep up the VRT and rest when needed.  I find that weather conditions bring these coditions on for me now.  Epecially when the barometric pressure is rising and falling over a short period of time.  Usually when there is a storm front coming through.  Also, if I really tire myself out doing more than I can.

    It takes a long time to get over this.

  • kate47167
    kate47167 vanessa69

    Posted

    Hey Vanessa it's tough you just have keep going the more you keep going the quicker your brain will remember the signals again. Like you have been doing well and well done by the way I to was 90% dizzy free for 3 yrs then 2 weeks ago bang walls swaying, rocking feeling the usual things and it upset me sooooo much I can't tell but I knew it could happen at any time and will prob happen again but is still hard, I have stopped driving again but am forcing myself to go into shops big ones with lots of colour and stay in there walking up and down I feel so sick and off balance after wards like now I am

    swaying but I know deep done it can only help. I walked down a steep hill yesterday and felt awful rest of the day !

    Try and rest all you can to rest helps so much

    • vanessa69
      vanessa69 kate47167

      Posted

      Thanks Katie I have my ups and downs too! Wen I walk it's really bad I cut th e grass the other day and wow! I'm gonna do my exercises and continue with my daily routine
    • anne05147
      anne05147 vanessa69

      Posted

      i've been off work this week because i felt so exhausted trying to work with the off balance feeling and visual problems problems following another bout of BPPV 2 weeks ago.   Whilst off i have been trying an exercise of my own.  I know its really hard to walk in a straight line with my eyes open most of the time but i have been trying to walk in a straight line with my eyes closed this week to really PUSH myself with compensation.  I do it without shoes on so that i can feel the lines in the tiles in my kitchen, to use as one would do with braille, so i can sense the tile lines through the soles of my feet as a guide,  and i have to take it really, really slowly, and i mean like a snails pace,  as it is nearly impossible, but not.  When i open my eyes my vision is clear because i think my brain is working so hard to complete this exercise that when i open my eyes it feels a sense of relief that at least i can now see where i'm going.  My gp has referred me to the 'dizzy clinic' so hoping that will help.  I'm hoping to go back to work this thursday.  Please be careful you don't  fall over if you try this exercise and although i do it on my own might be best to have someone around if you try it.  But now i have been doing it for past couple of days i am getting better at it where at first it seemed impossible and my bouncy vision does appear improved.
  • ben99468
    ben99468 vanessa69

    Posted

    Hello Vanessa, Ben here.

    I am a first time vertigo sufferer and "only" for about 16 months, so I am no authority on it, infact, I'd never even heard of it befor, short of a pilot losing directioin in a cloud, so please keep that in mind while I give my opinion. 

    At onset I had spinning.  Just like being on a merry-go-round.  Frankly I thought it was the flu bug, but after a day of the spinning with no perceptable change, I called the doctor and found out about BPPV.  ---BUT--- that was not my problem.

    After the spinning stopped, the doctor put me through an Eply.  When that didn't work, and since I had just completed a thorough physical examination, he sent me to a neurologist.  There I got the MRI and CAT SCAN, then on to an ENT, followed by 2 months of therapy for "desensitization" for damage caused by Meniere's which constisted of multiple maneuvers, pills and diet change.  

    I began to question my progress and asked for another opinion.  The new set of professionals redid some tests, and did even more, and prescribed more therapy this time for the newly diagnosed "Vestibular neuritis" "compensation".

    All the while I was making minute progress, as if time was healing me.  By the end of 12 months of this mania I had made progress to the point where I was now able to do some walking with a wheeled walker.  Over the next 3 months or so, I have made even more porgress, but I still cannot tell you if all the exercises helped or not. It might just have the been passing of time.  I will tell you that I have had ups and downs, but I cannot pin that on any particular event.  Not the weather, not exercises and not my diet.

    I think I may have over done my program sometimes and maybe that was the culprit, but I cannot say for sure.  I have read where others have had ups and downs too, but everyone seems to say it is due to something different.  Frankly I wonder about some kind of burn-out syndrome, like Epstein-Barr.  

    It seems that a lot of sufferers of Vertigo mention the Herpes Virus and so I looked up Epstein-Barr and guess what?  Here is a quote :    The Epstein–Barr virus, also called human herpesvirus 4, is one of eight viruses in the herpes family, and is one of the most common viruses in humans. It is best known as the cause of infectious mononucleosis.  Although I have never had it, I have heard how tired it makes you feel.  I just may have stumbled onto the culprit here.  Maybe it causes Vertigo and then makes you feel really tired.  And if you are like me, you deny the symptoms of fatigue and try to keep on going, and I believe, as I mentioned,  the continued effort to exercise and resume normal life causes the ups and downs.

    Now I could be totally wrong, and I want to qualify my statements as such so that I don't get beat up.  Some people on this forum can be very strong in their opinion and really put you down for your own.  So please keep that in mind.

    I would like to ask anyone who may have been diagnosed with any type of inner ear issue as reason for vertigo etc to think about the possibility of Epstein-Barr being the culprit for the disabling fatigue that seems to accompany. It may well be the actual Herpes that was the inner ear virus to start with.  

    I sincerely hope you can find something of value in my words to you Vanessa.  Please look for smaller signs of progress that you achieve that seem to persevere.  I wish you well asap.

    Ben  

    • vanessa69
      vanessa69 ben99468

      Posted

      Thanks ben; I have been to doctors er and the all test came back fine! The er doc comfirmed that I had vertigo so he showed me exercises that I can do and I do them.its just a pain cause your feeling better then your dizzy again!
  • Razouski
    Razouski vanessa69

    Posted

    Hi Vanessa, I've had vertigo/disequilibrium since December when I had sudden and profound hearing loss in one ear coupled with Vertigo, followed by tinnitus and other problems. I've worked hard on VRT exercises, and was determined to retrain my brain as my inner ear is completely damaged - no functioning semi-circular canals or cochlear, which means balance mechanism and hearing mechanism don't function. It's a slow process and although I'm much better - I can now walk and drive and am back at work I still have days when the spinning room takes a long time to get undercontrol, and when I look like a drunk (not good when you work in a school!!), but  I guess we all have to keep on persevering. Good luck... 

     

  • laurence76206
    laurence76206 vanessa69

    Posted

    Hi Venessa,

    I have now been officially diagnosed with Vestibular Neuritis after five months of seeing consultants/doctors and various tests (MRI/MRA, aduiology etc).  I too was making progress and felt well enough to go for longer walks and was considering returning to work.  Unfortunately I took a turn for the worse around Easter and have struggled since (hence still not gone back to work).   I suffer with hay fever and think that this has aggravated my condition.  My home backs straight onto a farmers field which is currently full of flowering rape seed, has anyone else suffered in this way?.

    Like you I have been religously carrying out my exercises but so far without any noticeable improvment.  I am having accupuncture and have a session scheduled today.  The Neurologist I saw is also a firm believer that accupuncture can help so this may be something you could try.

    I am also going to be given a course of steriods for two weeks.  I am not sure if anyone on the forum has tried these and can give me their opinion. 

    I read Ben's comment below about the Herpes virus as a cause, I also believe this is a likely culprit as my dizziness started with an ulcer on the cornea which I am informed is like a cold sore on the lip (Herpes virus). I have also been very fatigued since getting the dizziness.  

    I wish you all the best in your recovery, there are a lot of positives coming from good people on the forums which is very encouraging.

    • Terry6872737
      Terry6872737 laurence76206

      Posted

      The steroids always help me and the seasonal allergies cause me set backs as well. The added fluid retention in the sinus tissue places additional pressure on the inner ear and nerve. 7 months was the turning point for me in seeing noticie improvement. Keep up the VRT and you should see improvement as time goes by. My experience has been that you will see set backs from time to time. Allergies will definitely add to issues as well.
    • vanessa69
      vanessa69 Terry6872737

      Posted

      Yes the allergies don't help at all, I was feeling 70 percent and the dizziness came back still the exercises.hopefully it will go away cause it can be a pain
    • laurence76206
      laurence76206 Terry6872737

      Posted

      Hi Terry,

      Many thanks for this information.  It is good to hear that the steroids may help me, do you know if these will set me back in my progress in recovering naturally from the VN?

      best wishes

      Laurence

    • laurence76206
      laurence76206 Terry6872737

      Posted

      Hi Terry,

      I also meant to ask, do you take anything for your allergies (as I am not taking anything at present) and are they ok to take whilst taking other medication (e.g steroids).

      Once again thanks for your help and advice.

      Best wishes

      Laurence

    • Terry6872737
      Terry6872737 laurence76206

      Posted

      The steriods always helped boost me forward.  I take Claritin every day for allergies.  I use the type that disolve and can usually tell when I miss a day.  I also use a saline rinse everyday.  During the past year I have probably taken 5 or 6 steroid dose packs and never experienced any issues and I always noticed an improvement in my VN issues.

      Have you been able to introduce the reduced sodium into your diet?  As Cally and I mentioned earlier, it took seven month for me to notice any real appreciable difference.  I too had a set back after month three that caused me to question if I would ever recover from this stuff.  From there it took me four additional months to get over whatever caused that set back.  I believe that it was induced by over doing some VRT exercises that I found on the internet.  I thought that the more I did the better it would be and the faster the recovery.  And, I was wrong!!  They have to be measured and limited.

      The VRT exercises will help to overcome the VN issues but, I firmly believe that time is the key ingredient for the healing process.  You try and do so many things that it is often times hard to try to determine what really helped.  The things that I still do every day are those that I mentioned to you earlier.  I believe that Cally will share that she has the same routine now that she has had for the past several months.  Nothing is going to show results over night or even in a week or two.  You just have to get a regimine in place and stay the course.  It will get better with time.

      Best wishes, Terry 

    • vanessa69
      vanessa69 Terry6872737

      Posted

      Yea I was diagnosed with berth go a few weeks ago; had blood work ekg and all my test came back fine! I was put on allergy medicine and ativan which helps some! I was feeling 70 percent better then the other day it came back full.i do my exercises that were given to me everyday too! Today I haven a good day; hopefully it will go away soon cause it's sucks!
    • Terry6872737
      Terry6872737 vanessa69

      Posted

      Allergy season set me back as well. It is best to be proctive and stay ahead of any potential inflammation and increase in fluid retention in the sinuses and middle ear. I use a saline sinus rinse everyday. It really helps to keep allergens washed out of the nasal cavities.
    • laurence76206
      laurence76206 Terry6872737

      Posted

      Hi Terry,

      I was going to start a new discussion but thought I would ask your opinion.  I have found that my condition has been a more gradual decline in that I have gained sypmtoms that I never had from the start.

      Initilaly I was suffering with mainly being off balance/dizzy which affected me when also using the computer and difficulty in concentrating on conversations, but I could cope ok.  Over the past two months I have developed problems with my vision (flickering eyes, blurred vision and difficulty watching some things on TV), weakness in the legs and some times in the arms, become dizzier hence I find it hard to get into a comfortable position for relief and my mood has gone down.  The only real improvement is my anxiety levels and I think this is due to knowing that following numerous tests it is nothing even worse (if that is possible).  When I had the test for nystigma in march this came back ok but I think this has developed since.

      I am having accupuncture but am beginning to think that this is doing more harm than good.  The accupuncturist though does believe that because of these additional symptoms my body is now responding properly to the illness (he has always said that things will get worse before getting better).  I am thinking of stopping the accupuncture to see if I start to improve.

      On the subject of allergy tablets I have some in my cupboard which are sold in the UK by our Boots chemist called Loratadine.  

      Last night I was very bad and had to retire early to bed, I am feeling very groggy this morning (it is difficult writing this post) therefore don't feel able to do any VRT, what are you thoughts on this should I still battle on with the VRT if only for 5 minutes.  

      I also think that the other problem I have is that when I have better days I do try to do too much and perhaps this sets me back.  I also think that I did not take the condition seriously enough from the outset as I was going for long walks, still drinking the occasional alcoholic drink and  tried socialising, all this stopped at the beginning of April when I took a big turn for the worse and I have had no sign of recovery since. I am still no where near able to return to work.

      Anyway, many thanks for all your advice and help.

      best wishes

      Laurence

    • Terry6872737
      Terry6872737 laurence76206

      Posted

      The vision and eye issue definitely sound like nystagmus.  Not sure why the accupuncturist felt that you would get worse before getting better.  Over the course of 14 months for me I saw 1 major setback and I firmly believe that it was from over doing the vestibular exercises that I found on the internet.  I believe that you can push the nerve too far and will see a set back as a result.  While the nerve is damaged it is more sensitive to being required to over exert itself.  From what I have read in your posts you may be pushing it too fast.  As I mentioned earlier, time in my opinion is the most crucial factor.  The set back that I had in the beginning of month 4 made me feel that I had something new.  The anxiety was terrible and the symptoms came on in waves.  New sensations where just out of the blue I would feel as if I was about to pass out.  It's hard to explain the feeling but, it was almost like an intense feling that you get before you vomit but, that never happened.  My legs were weak as if they wouldn't cooperate with what my brain was telling them.  At that time I stopped all medications that I was taking, stopped alcohol, caffeine. chocolate, etc.  Not sure that any of it made a difference but, that is what I did.  I wanted a zero base to rule out everything that I could.  I have not introduced any of those things back as of yet.

      Being on the computer drove me crazy for several months, and anything that required that I focus on it for any period of time.  I had nystagmus for 8 months.  Each month it slowly regressed and I did an exercise for gaze stabilization.Some days I could do it and other days I couldn't.

      If these symptoms have come on since you began the accupuncture I would eliminate that first and see if they begin to improve.  The sodium reduction I believe helped me more than anything and anytime I could convince my doctor to give me a regimine of steroids I believe that it helped improve the symptoms.  I did not introduce my daily medications back until probably month 6 or 7.  And then only one at the time until I could see if it had a negative impact. 

      The important thing is to get on a routine and stick to that routine that is directed at improving the symptoms.  I know that is hard because we never know what helped or made a difference.  Believe me, you will know what has a negative impact.  Once you identify that eleimnate it from the recovery process.

      I would reduce the distance that you are trying to walk, start a low sodium diet, take a low dose aspirin everyday, eliminate all alcohol, caffeine and chocolate, do the VRT daily, and don't push yourself.  We cannot control when this stuff goes away and we cannot control the increments that improvement comes.  The more you have activities where your head bobs and the more visual stimuli that you expose yourself to the harder the recovery process will be.  If 10 minutes of VRT makes you feel bad, do 5 minutes. 

      It sounds to me like you may have tried to get back to normal things too quickly.  And when I say too qiuckly I know that in VN terms that is months.  I have struggled with this stuff for 14 months and am just starting to feel close to the way that I felt before it all began.  Patience is not one of my virtues so it has been extremely difficult for me.  I was off work for two months back in the summer and that was after I had worked most every day after this initially began.  When it began I was out of work for 2 weeks than went back until whatever second wave hit me at the first of July.  After that I was out of work for 2 months and it took me 6 or 7 weeks after that before I could work a full day.

      I believe that you are going to get better and get back to doing the things that you want to do.  This is harder on us as we age, the recovery process is much slower.  There will be setbacks from time to time but, they will get to the point where they are short in duration.  Allergies don't help either.  I took several courses of antibiotics, steroid shots and steroid dose packs as my allergies flared up.  That is why I try to stay ahead of that issue by using the saline rinse everyday and the Claritin seems to work well for me.  I find that the Claritin doesn't add to the VN symptoms and keeps the allergens from taking hold.

      You're going to make it but, as I said get you a regular routine, cut out the things that I mentioned, and pace yourself.  Try to eliminate stress as much as you can, not the stress of dealing with the VN but, the other stressers that life can impose.

      Cally is a great resource as well.  She had concerns early on, as all of us do, as to whether or not she was improving.  She has come a long way and has a great outlook again.  Stay positive and let the recovery take its course.  Don't try to find a magic pill or therapy.  From my experience, they don't exist.  Time and patience are the best ingredients.

      Feel free to ask me any question that you may have.  I'm more than happy to relate anything that I experienced along this journey that may help anyone that is struggling with the horrid condition.

         

    • laurence76206
      laurence76206 Terry6872737

      Posted

      Hi Terry,

      Many thanks for this great feedback.  I have certainly taken things a lot easier today but have managed 5 minutes of the VRT.

      I have just purchased something called prevalin for my allergy issues if this doesn't help I will try the claritin as they sell this in the UK.

      Whilst off work I have tried doing things around the house to keep myself occupied e.g gardening, housework etc perhaps I should take it a littel easier and do less and gradually build this up as I improve.

      I have now cut out all those things you suggest and reduced my salt intake to around 4g per day.  I do though still eat things laike cake and biscuits, perhaps I need to reduce this also?  

      Once again thanks for all your good advice.

      Bets wishes

      Laurence

    • ben99468
      ben99468 laurence76206

      Posted

      Hi,  Ben here.

      I just thought I'd chime in for a second.

       

      I would like to say, or remind, that most of the drugs we take for symptom relief, like decongestants and antihistimines/ histimine blockers and teroids, like antivert, meclizine, dramamine etc slow down the recovery process.  

      I am no doctor, so I don't know this from any study standpoint, but I was told repeatedly by my GP and ENT not to take any of those if I can bear not to, because they slow down the recovery process.  You can google how they work and make your own decisions.  I have, and take it from me, it is a complicated process to stop nausia and dizziness brought on by motion sickness, and it causes a lot of things to happen in the process of stopping the motion sickness feelings.  

      At the risk of sounding contradictory though, I wonder if anyone has used the newer nasal sprays Fluticasone, like Flonase or the  Adrenocortical Steroid Nasacort. .  

      I ask, because these are the latest things to hit the market and maybe they are better.  Maybe they control the symptoms of allergy in a new way, and therefor possibly they could be used less often, or maybe they don't interfere with recovery.  I don't know if they control motion sickness, but they do work in much the same way on the symptoms of allergy by reducing inflamation and that is what the antihistamines do. 

      Hope this helps.

      Ben 

    • laurence76206
      laurence76206 ben99468

      Posted

      Hi Ben,

      Thanks for your feedback.  I was told by my ENT consultant to avoid taking some of the tablets for the dizziiness e.g Prochloperazine as these could slow down the recovery.  I do take the odd tablet once in a while but find the only one that really helps the dizziness is the diazepam (and they don't like prescribing those even though they are listed as one of the drugs for Vestibualr conditions).  I am due to see my Doctor on Tuesday to discuss the steriods, the neurologist thinks that a two week course will help and won't do any real harm in the long run.

      The nasal spray I am currently using (Prevalin) for allergy is non steriodal and non antihistamine so should not do any harm (I would hope).

      Best wishes.

      Laurence

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