If you self treat with exercises be careful to not overdo it. 3 or 4 exercises at most and no more than 8 to 10 minutes total.
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.
I do mine twice a day for bout 5mins.theu help but I also keep myself going all day
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
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.
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
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
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