I am in the early stages of healing (3 weeks post Epley) and am thoroughly confused about compensation.

1) I am still quite acutely sick - do you push now or wait for things to settle?

2) I have tried to go from my recliner to the bed and stay continuously dizzy. Does that mean it is too early, should I lay down for short periods. How did others make this transition.

3) Is there an early stege to this that tends to lift. I am still nauseated, depressed, walk like a drunk, get way sick if I do much of anything and have symptoms change hour-to-hour and day to day (none of them good).

Thanks

James (R)

Hi James,
My heart goes out to you, you are really having the lousiest time with this BPPV and such severe symptoms. I also had setbacks with this condition - one of them I even brought on myself doing a stupid exercise for my back. But nothing like yours. I found that sleeping sitting up helped even after the 48 hours. I think that from everything I've read on this and other sites, there's no hard and fast rule about recovery time. It's just so frustrating and depressing when you just don't seem to move forward, but I think part of the answer lies in your comment "...when I do too much of anything." Just take it very very slowly. I know it's hard, but if you had a slipped disc, you wouldn't try chopping wood or go for a run. Even small things seem like huge tasks when we are suffering with this. Also, can you check with the Dr. (Dr. Hughes?) who did your epley and get his input on your condition? Since I seem to remember that you had a couple of "bad" epleys, this has probably set you back more than necessary. Were you given any exercises at all? I think eyetracking exercises can help with the imbalance, but consult with the dr./therapist. So please be patient - OK, sorry - I know that's hard! - and just keep posting your feelings. We are all here for each other and that is the biggest help there is.
Hang in there
Madeleine

James,

I agree with Madeleine, check in with doc Hughes. I didn't have as hard a time post-Epley as you're having, but as Madeleine pointed out, everyone reacts and progresses in their own way. The point is you need to be able to function. I know you're anti-meds, and generally so am I, but before the Epley when I felt like you do now, I took Xanax for a month to get a handle on the dizziness and also the anxiety, and it helped me to move forward. I took a very small amount (.25 mg every six hours), and was able to stop taking it after a month with no problems whatsoever. Consulting with Hughes might result in some ways to help you cope, whether its short-term meds or, as Mad said, some eye exercises.

Terri

Dr. Hughes said any medications would slow or stop the compensation process, including tranquilizers. He also said that there are no exercises other than standard life activities he would prescribe.

I guess all the "bad" Epleys and the Daroffs I had may have really set me off. I am just so weary of living white knuckles 24/7.

James (r)

Not sure what you mean by life activities. I had the Daroff at one time. the first few days were horrible and I felt so sick - I was supposed to do 5 sets 5 times a day - and I did. I only kept at them because my daughter encouraged me. But after about 2 weeks there was definite improvement. But I had to stop doing them when I had a set back with back exercises . Then I had another couple of epleys and now I have a different exercise, which has taken about 6 weeks so far and showing improvement.

I agree about meds as I gather from other BPPV sufferers that there aren't really any meds for this condition. But how about something for the nausea at least? Even something mild? I suppose it's a question of the rate of compensation versus dealing with the nausea. Have you spoken to Dr. Hughes recently? What does he say about how bad you're feeling? Can he give you some encouragement? It WILL get better.
Madeleine

James and Mad

My ENT was on the same wave length as Doc Hughes; no meds (it was my GP who put me on the Xanax before I ever saw the ENT) and everyday activities for improvement. By that he meant walking or whatever you would normally do, but not a static life because if you don't get out there and do something, your brain has no ability to adjust.

Terri

MY ENT was useless in telling me anything about BPPV - I suspect he didn't know too much himself. Just said it can go away and come back years later. The physiotherapist who did the epleys and gave me the exercises also didn't tell me anything. Everything I know I found out from these and other boards, and since I came by the boards I haven't really had any bad days, but if I do feel a bit wobbly I make sure I just get going with something round the house or garden. I did take something for the nausea, but only when I actually felt sick, not on a regular basis - a generic drug for general nausea, travel sickness etc. I do take a mild sleeping pill when I can't get to sleep because of anxiety but even that seems to have passed.
Madeleine

Both Dr. Hughes (who co-invented the Epley) and my ENT told me the Daroff is outdated and only causes further brain confusion when you have BPPV.

It may be indicated for other problems but when I did it it really screwed me up and was the start of my most severe symtoms.

Dr. Hughes is only a consultant and my ENT is pretty worthless.

James (R)

Hi James,

So many here are supporting you on this - so very sorry to hear the low point you're at. I can relate to low points, fear, and discouragement.

For me, I saw MANY specialists. I did not have any of the therapy done that you are going through, but I can tell you that most of what I have found to help me along during my rough patches was hit and miss by me experimenting with my limitations and symptoms. I found a few of the doctors that I saw didn't seem concerned with my symptoms or fears from an emotional standpoint, and I really needed that extra compassion because I was so scared about all the sensations and changes taking place within my body, and sometimes it was just too much. I located a great neurologist (not to mention my own primary care doctor) who provides me with emotional support as well as medical suggestions for improvement. My primary care doctor is a good, patient person, but he reached a point where he did not know how else to help me. Sometimes in the past on really bad stretches, I would call my neurologist just to get the moral support that I needed; it made me feel better to just get the reassurance that I was okay and to know that other people dealt with the same thing. My point being, I feel it's important to "connect" with your doctor because the emotional support part is just as important as the medical part of therapy, even if a cure can't happen right away.

You may need to experiment with your symptoms to see what you can and can't do. That's how I got around a lot. Tiny steps to challenge myself. "It aint' easy" to coin a phrase...

As for medications, I can understand what your MD stated about not taking them as much as I am able, but I did not have that issue come up with me, so I was given a low dose of Amitriptyline to take a few years ago, and within three days my symptoms completely cleared up. My point being, that maybe at some point you will want to give medications a try to alleviate your current symptoms, even if it slows progress in healing - just to get some relief. I believe my symptoms may mimic yours, but are caused from something different, which is why medication was an option. I dislike taking medications.

If you are sure that you want to remain off certain medications, are you able to at least try aspirin and antihistamine? I great very good results by taking two 500 mg plain aspirin and two teaspoons of Dimetapp over-the-counter antihistamine. You may also want to try Benedryl instead. Of course, ask your doctor first.

For the nausea, you may want to try something really pepperminty, like Peppermint Altoids or Peppermint gum. Also, a cup of black coffee with a little milk may also help curb your upset stomach.

How are you able to get onto the Internet? In my worst moments, I was not able to do that at all.

Keeping you in our thoughts James! :p

Hi James,

I am with you completely about feeling utterly horrendous post epley. i felt so completely weird I even went to the optition to have my eyes checked as they felt completely out of wack. ia lso had the waves of nausea, big time sea legs etc etc. All I can say is that there is no complete miracle fix all cure for this. BUT and its a big BUT you can most deffinately help by taking things step by step and bit by bit.

Last year I did not functio for the best part of 5 months, the sum total of functioning for me was to stay on my bed getting up to the bathroom if very desperate and not moving. I felt soooooooo utterly horrndous, off balance, boiuncy vision, sick everything and anything made me severly dizzy and very very off balance, I would grip a surface or wall to walk. My husband worked away week days and I was pregnant and had 2 little kids to take care of me. NIGHTMARE! is an understatement, i was completely housebound. Mreals would be drive throughs and shopping and house work non igsistent. So I can completely GET what you are describing and some. OK so you get the picture.

Well last Oct I started the epleys and no it was no instant cure at all. BUT it did help with the horrendous 24/7 feelings of perpetual motion. BUT I have found 100% that I needed to move around as much as possible, even though I felt bad. It really is the ONLY way that the brain can compensate and switch off/learn to ignore the bum signals. There is no other way, what is they say practise makes perfect.

Now it scared to me to bits, I felt way out and really frightened. So i did a like mini programme. I set little targets, so clean the bedroom for 15 minutes, stop, recover and start over. I walked a little around the home only for a few weeks. Then by december (12 weeks later) was able to go out very briefly into a shop myslef and then home. I carried that on and on in the same fashion and in the belief that this would get me better. It did. i can know function almost normally, I am back at work, driving, looking after the kids, cleaning, shopping etc, looking after the kids.

What also helped me was having some one to turn to proffesionally when I was scread of the symptoms to positively reinforce that nothing bad was going to happen to me and that i was most deff going to get better.

It has taken me around 6-7 months to reach a state of coping to a normal level if you get me, it don't happen over night. So what i am saying is that progress is pretty slow its more like month to month. Oh and to reasure you further YES my symptoms also cahnged by the hour and bothered me all the time.

The other aspect is the anxiety, i did not take meds, personal choice in fact thet were never offered to me with the exception of a small dose of diazapham in the very extreme period of intense spinning vertigo I had initially.

But all the experts seem to agree that being scared makes the symptoms more intense, perhaps getting re-reasured will help diminsih this for you and also talking here will help you realsie that you are deff not alone and that this will pass, this is not you for life, its just a phase!

Also the other thing about BPPV is that there is still some debate as to which type of debri/crystals etc you may have, which canal and how many were moved if any during an epley. The crystals as I am sure you aware are some times not only free floating in the canal but can become attached to section of the ear that cannot be repositioned as simply as by an epley. Any wasy i am sure you know all that.

But really to sum up, dont loose heart, this will improve there is no doubt, be patient and little by little getup and do stuff just make sure that you pace yourself!!

Big hug, sounds like you could use one.
Chin Up!!

Ilia

Hi James,

I agree with the doctors that some of the exercises actually creates more problems. If the Epley works, you shouldn't have any more symptoms, especially like you have....unless it's as willsmommy said -- not a completed one and the crystals (or the sludge stuff) has not moved from the area or moved into another area or moved into another canal. There are two theories of what is in the canals....sludge or crystals stuck to the cupula. The crystals stuck to the cupula won't be helped by the Epley. But, the Semont helps amazingly.

UNLESS....you don't only have BPPV.

Your symptoms sound a lot like the ones I had when my last stint was 3 years. I didn't have the Epley beforehand, so that's where we differ. And it also leads me to think the Epley isn't the be all and end all BPPV symptom treatment. During those years, I did have vertigo-free times, and I was up and down with symptoms as severe as the ones you're describing.

During the days I had to go out (yes I could drive), do hair, whatever....I took a half a gravol to help with the nausea. It helped tremendously, and even took some of the edge off the spaciness. It at least didn't leave me nonfunctioning.

I can totally relate to your frustration, anxiety and depression. I was at a loss because the doctor wasn't much help (and he wrote a book on the subject!!).

Yes, as willsmommy suggested..keep moving. I would, however suggest you not sleep sitting in your chair, and as you lay in your bed and turn over, do it quickly and then keep your head still on the pillow until your vertigo stops. It won't make any difference. As well, that's something you do naturally....and it's part of your activities. Just don't have your pillows elevated when you're on your side. Lay flat with one pillow or neck pillow to give you good support. Rest is also important. Who knows, one morning you'll wake up and realise your turning has actually boomeranged that little crystal away and you'll be feeling better. It's happened to me a few times.

I have two questions for you.
Which ear is affected on you?

Are you willing to do anything on your own?

hang in there...

quincy

Thanks

After the Epley I no longer have vertigo. It has gone to dizziness, boat legs, headaches and feeling very off and sick. When I lay down I get such severe dizziness it almost feel like vertigo but it is not the spins.

James

James,

Ran across this and thought of you and your situation, post-Epley. This is probably a good description of what's going on (see also Subs' post on page 8 of "Is this BPPV?" thread started by Scotsman for more info):

When a sudden injury occurs to one side of the balance system, the patient may feel very sick for hours to a few days with a spinning feeling, unsteadiness, lightheadedness, and often sweating, nausea, and vomiting. This is because the signals being sent from the two balance organs are no longer equal and opposite, and the brain interprets the difference as constant movement. Researchers theorize that after this initial period, the brain recognizes that the signals being received from the ears are incorrect and turns the signals off through a process called the cerebellar clamp. When the clamp is in place, the spinning and much of the 'sick' feeling improve. The patient feels unsteady while standing though, because the balance organ signals normally used to maintain balance have been turned off. The patient may also report dizziness or blurred vision with movements. Vision and proprioception (the sense of pressure at the bottom of the feet) are also used to maintain balance, so the patient can walk but will feel unsteady and may fall in the dark or on soft or bumpy floors like thick carpet, grass, or gravel.

Hope you are feeling better and the clamp has begun to be set.

Terri