Hello everyone

I've been dizzy for 11 months now and was convinced I was safely on the road to recovery. I recently experienced over 3 weeks of feeling almost my old self. What happened? Today is day 10 of feeling terrible. Constant, constant moving. I just want to get off this ride!!! How can I have such a setback??

Hi Jen, I'm afraid I totally understand the way you feel. I am four months in to this and was finally feeling that I was getting there, until saturday night when I took a bit of a nosedive and am still feeling pretty poor.

I put mine down to weather (we had lots of thunderstorms over the weekend) and my period which always seems to affect me, and I'm trying to reassure myself that this is just a little blip.

Unfortunately from what everyone else on here has said, it does seem that this is just what happens occasionally as you recover. Don't let yourself think you're back to square one though, you are still getting better, it's just a case of two steps forward and one step back. Maybe next time you'll have four good weeks before a bad patch and then six.

Keep your chin up hon, you are going to get rid of this thing, hope you feel better soon xx

Hi Jen and Dizzyblonde,

I know this isn't quite what you had in mind, Jen, but also been going through a set back - was fairly inconsolable last night as I was back to being so out of it I could barely have a conversation. I had such a fantastic day on Saturday dizzy wise I forgot about dizziness completely, only to be hit by the monster on Saturday night with horrible ferocity. I'm figuring if we're all experiencing these set backs after a good stretch - then it's a normal part of the process and we'll all get back on track. (I sound more optimistic than I feel.)

Are there any triggers you can think of? Along with the dizzies I have an (I believe) tmjd induced headache/face ache that is making me want to rip my face off. My neck and shoulders are also bad. Are you in any other pain - headaches etc... Been clenching a lot etc? I do think if you're a tmjd sufferer it's a vicious cycle - pain = stress = increase in dizziness, whether neck tension or inner damage induced. I've recently started trying to work consistently again - planning a project - quite stressful - think that's also a big part of it. I also got my period the day after this recent bout of horror started - like Dizzyblonde, this is a big factor for me, and I know it is for you too. My physio told me that your period, whether mid cycle or actual, will also adversely impact on neck and jaw problems, as will extreme heat - the soaring temps in England recently have played a big part for me, I think.These things, as you know, also impact on the inner ear. Well, these all seem to be factors, but, like you, I don't know. Are you still on the tricyclics? You haven't recently come off them or anything? Guess that could also be a factor, don't know.

I wish I could offer you more encouragement, Jen, but I can't other than to say I'm also experiencing a set back, and this must mean it's all part of the process of recovery. It's just so hard to believe it when you've experienced the sheer euphoria of better health. Got to admit at the moment I just want to cry and throw things. The only advice I can offer is to tell you what I'm doing, trying very hard not to panic, not to create more tension in my body etc. Much easier said than done I know, can't say I'm being 100% successful in this. Also, I do think that better health promotes more activity, I think that there comes a point when you're still compensating where your brain suddenly realises it's being given more to do, gets fed up and decides to stop co operating for a while. It's like your brain's gone back to school, is a diligent student, then gets fed up for a bit, plays truant, goes shopping and doesn't give in its homework. It will, however, after a brief respite, get back in to the classroom.

Wishing you much better again soon Jen, I know you will be, really, truly.

best,

hbep.

Hi Jen

Sorry to hear that you have gone 10 days----but should be ending shortly----I would think----in fact---3 weeks of 100% is an excellent sign---far better then I have done---to date---&---I've been at for 12months now.

Below is just some highlights from the article on the web site I listed after the "highlights"---------

Decompensation simply means that the brain has 'forgotten' the fine-tuning procedure it developed during the chronic compensation phase described above.

Events that can provoke Decompensation include a bad cold or the flu, minor surgery,


long vacations,


or anything that stops normal daily activity for a few days.


Recovery after Decompensation is exactly like the recovery that occurs during the chronic compensation phase. Movements and activities are the stimuli the brain needs to fine-tune the system.


Usually recovery after Decompensation is quicker than the recovery after the initial injury to the balance system.

It's important to remember that even after the symptoms go away, the balance system remains injured, and the brain has simply adapted to the injury.


For many patients, dizziness will return months or years after compensating for a balance system injury.


http://www-personal.umich.edu/~boismier/Compensa.htm

Any correlation of the dizziness---- to certain positioning of your body????


Your----3 weeks of 100%---- after 11 months-----is good-----it a shame that "long vacations" can cause a person to decompensate---but for some reason----in some people the medical evidence---indicates that it can-------wonder if that is what happened here------were you on vacation to "Perth" or did I get that wrong???


In any case----think----you will pick up where you left off shortly------Good Luck!!

Far be it for me to give you any form of encouragement since I had my little breakdown a couple of days ago.
My biggest thing that I believe holds me back is the fact that I can't get rid of the anxiety. This is a constant battle with me. However, Hbep mentioned a while back if I was doing any of the VRT exercises and I said I didn't think they were going to help because they didn't make me dizzy when I did them. However what I do and I owe this to Subs also is I make myself walk at least 45 minutes to 1 hour every evening after dinner. This is where I do my VRT exercises because I feel that not only are you stimulating that stubborn brain but you are also getting the blood flowing and moving those endorphins. I will say that sometimes when I am having a bad day that when I come back from my walk I still don't feel any better but I would say 8 out of 10 times it makes me feel better inside. I know that you said you started back at the gym, but it might be a nice idea for you to try a really brisk walk and practice the drunk walk test with your eyes open and then with your eyes closed. I do it on a flat surface then on an incline. I find a cloud and focus from the cloud to a tree back and forth and count 1 onethousand 2 one thousand until I hit twenty. I don't know if you have any country roads where you are but this is what I do every night. I don't care who sees me.
I walk 5 paces then bend down and pick up a leaf or a rock and continue this down the road. I hate this thing just as much as the rest of you. What are we going to do? I have no choice but to keep fighting this. I am doing every possible thing I can imagine to get myself better. Have you considered trying the johns of Ohio regime? I spoke to my acupuncturist who is incredibly knowledgable and he said either way it is going to increase the blood circulation. Jen, you have been their so many times for me and I can only send you healthy vibes. I hate to say this but I think Subs, I'm sorry to bring you into this but Jen needs you. She's always been a fighter. We ask so much from you Subs, but you always know what to say. Please pick this girl up!

{{{{{Hug}}}}}
Kathy

Hbep,Dizzyblonde, I hope that better days are just around the corner.

Hey Jen,

I hope this post finds you feeling better. I too, am feeling a little off. Have been for the past 2 days... I started feeling weird after laying on my side while reading. I am getting so irritated with this thing. It's just so annoying to have great days (weeks) and think that this thing is almost out of the window... and then it pops back up. I pray and pray everyday that this thing goes away period. I start a new job soon and really don't want to have to call in and all that crap (because I will be a part of management). I'm wondering why some people get this and then it's gone 3-6 weeks later. And, not us. Come on now... I think almost a year should have been ample time for this thing to go away and for the brain to compensate. Sometimes, I try to learn to live with this and get used to it, but I can't. But, I keep trying. I still hear a little tinnitus at times too, so as this gradually goes away I feel that the ear problem is gradually going away. Who knows?

Even though I do feel better from the initial period- I want to feel normal again. I want to be able to go for a long run, do some jumping jacks... I want to be able to do everything I was able to a year ago. This absolutely sucksssss! I'm sorry. But, I really just needed to vent. I do still feel better than I did at first. And, I totally know how you feel. But, you aren't as bad as you were 2 months ago, right? Let's just look at it like this. I think in another 2 months you are going to feel much better than now and when you have setbacks- they'll be much lighter. I feel the same about me too. But, setbacks period suck at the time. But, I believe we will be better again. It's just a matter of WHEN. Take care Jen. And, to all of my dizzy friends... feel good soon.

Hello everyone

Your posts have made me feel so much better, I can't tell you. Thank you, thank you everyone. Unfortunately I can't report any improvement today, but hey, maybe I will tomorrow. I feel like I'm at sea, but the sea is not very rough, just a gentle swaying, rocking sea that never quite goes calm. The only relief I get is when I shut my eyes at night and go to sleep.

Hbep, to answer your question on what could possibly have caused this, I actually know what did. I had a number of very stressful incidences over the past week and a half and they coincide with the onset of the dizzies. I was amazed at how stress is so closely related. I don't normally have stress in my life (other than having a headmonstor terrorising me all day every day) so when these things happened they really set me off. I am happy to report though that I have put them behind me now and am moving on. Stress has also caused me to clench more at night (I can actually feel the tension in my face and jaw when I wake up) which has of course caused more headaches. Geez, I'm a self-destructing wreck!

Subs, no I didn't go on holiday. It was Kippers that went to Perth. I have no dizziness that relates to body positioning. It's just constant constant movement. I am happy to accept that this is just a phase of de-compensation...and I hope like hell that I compensate again quickly!

Kathy, thanks so much for the support. I have not stopped going to the gym. I just walk around it in a daze because the dizziness gets worse after I do any cardio exercise. I'm determined not to stop gym as I'm really on a roll. I go 3 times a week and like you said, mentally it really helps. I think you're right about walking though. The only problem is that it's winter here so mornings are out of the question! http://www.healthboards.com/ubb/smile.gif OK, I know it's not as cold as the UK or your part of the world in winter, but it's cold enough! The evenings are very dark, so I'll have to drag hubby along with me. He used to walk with me all the time in summer because walking did make me feel better.

Dizzyblonde, Navelis, thanks for your posts. I hope we ALL enter a good patch STARTING TOMORROW!! Here's to a dizzy free weekend.

Jen

Oh Hbep, I came off the amitryptilene about 3 or 4 weeks ago. I can't remember exactly when. I had 2 more weeks of feeling good after I came off them though. I have been wondering whether it was them that made me feel so much better. I'm going to wait another week or so before starting a course of them again. I want to see if I get better on my own without the drugs. It's hard though!

Hi Jen,

Seem to remember when I had my horrible experience with the tricyclic, and was desperate once I stopped to get it out of my system, the doc said it would take about 2 weeks to leave my body. I understand your lack of desire to take drugs, but from what I remember you've had neck problems for years and years, maybe you'd need a longer run of a drug to coax your neck/jaw muscles in to finally relaxing and staying relaxed. I totally understand not wanting to become dependant on something, but I think in your position if I saw it as a step towards recovery it might not bother me as much. I realise it's different but one of the first dizzy people I ever spoke to was someone with MAV. She took the drugs which cured her for, as far as I remember, about 6-8 months - she came off them at that point and has never looked back. She still writes the occasional post elsewhere on the net, her dizzies are still gone and she's still off the drugs.

I don't know, Jen, I'm no doctor, the combo of the drugs and the good stretch could be a coincidence, it's impossible to know for sure, but when you mentioned the good stretch lasted 2 weeks after stopping, and I remembered what the doc had said to me, I thought it was worth mentioning.

And yes, I totally 100% agree about the stress.

I've been feeling as bit better as of last night, I really hope you are too,

best,

hbep.

Hi Jen,
Sorry you've been going through a setback. But remember - it is just a setback. I am 100% certain that in time these setbacks will gradually fade away.

I tend to make the terrible mistake of telling people that the dizziness has gone only to get a little reminder now and then that it can still come back and torment me. Having said that, I am thankful that this only happens sometimes - I am mostly dizzy-free. Like Hbep I seem to get the setbacks just before my period - don't know what that is all about!
Hbep - sorry you are also having a hard time. Are you having any luck treating the TMJ? Apologies for not replying to your earlier post - we have had trouble connecting to the internet on our computer this last week - I think the heat got to it! Will update you on the tinnitus in a new post later - am off to work now......

Ruth
xxx

Hey Ruth,

Sooo good to hear from you, I thought you weren't coming back. Yes, do let me know how you are, how the tinnitus is. I am off to lunch with a friend - so will update you on the tmjd treatment after. I'm meant to be at my computer , working, but after the last few days I figure I deserve lunch plus large slice of cake.

talk soon,

hbep.

hi everyone,
not wanting to appear impertinent
sooooooooooooo know what you all feel......still rocking here......my doc suggested exactly what u said scant5,..... about the walking..... he said to walk morning and evening round the block to release the endorphins.......wishing you all better days ahead
take care
brina

[This message has been edited by brina (edited 08-15-2003).]

Ruth...Hi! I had wondered where you'd got to! Glad to hear you are mostly dizzy free.

Hbep, your message mirrors my thoughts. Today, thankfully, I've woken up to a better day. Not great, but better. The at-sea feeling is better. I'm going to give it a couple of weeks before going back onto the amitripylene. If I go through another really good phase without it then I'll know it's just a coincidence that I felt good around the time I took it. I reckon I have time to play with here! What's another 2 weeks after 11 months??

Hannah (I think that was her name) actually emailed me some time back when I got in touch with her. I know she had a good experience with drugs. I'm certainly not ruling them out.

Off to a birthday party now, and once again I'll be the only tea-totaller there. I too make the mistake of telling people that I'm better only to experience a set-back and then have to tell them that too. I've been doing it all along! So silly.

Have a good weekend guys.

Jen

Hi everyone

Just checking in to see how everyone is doing. You all joined me in my bad phase last week. Has anyone improved? I feel a little better, but not great. This is been one hellava long bad phase.

Hope you're all doing ok.

Jen

Hi Jen. Not much good news from me I'm afraid. Began feeling a little better on Sunday morning but it all came back again by mid afternoon. Was totally exhausted by the time I got home in the evening too and today has followed a similar pattern.

Haven't seen my cranial osteopath for a few weeks now but am due back tomorrow, am curious as to whether he will find and deterriotion from a neck point of view which might account fo the way I'm feeling.

Oh well, hopefully we will all be feeling better again soon - fngers crossed anyway. I feel like having an "it's not fair tantrum" at the moment, I'm just sick of my life being on hold http://www.healthboards.com/ubb/frown.gif

Hi,

I'm with Dizzyblonde on this one, want to rattle the cage, jump out of my body and move on. I am not as bad as I was, but nor am I as good as I was. Mucho self pity and general boredom with it all. I lay in bed last night imagining sticking a large spoon in my ears and scooping the bad out. Think Van Gogh had a similiar idea at one point. Unfortunately he seemed to be under the illusion it would actually work. Imagine how annoyed he must've felt with one ear and still feeling dizzy.

I am not getting in to do VRT till 9th September. When I found this out decided to pull myself together (AGAIN) and start doing the exercises. I thought it was best to home in on the ones that seemed to most mimic when dizziness often happens for me. I started with the lying down, rolling from side to side exercise, and hey presto, it didn't make me dizzy at the time but just made me feel much dizzier generally. Back to feeling like I was on a cruise ship when lying in bed. Arghhhhh. Dunno what to think, my friend with lab said if it makes you feel rubbish all the time you're doing too much, so now I don't know what to do.Do the exercises make you feel much dizzier when you do them? With me it seems to kick in 10 mins later. This is obviously confusing as I am meant to do the ones that start to make me feel dizzy. Maybe I'm not a candidate for VRT??

Just frustrated generally really, want this dizzy garbage out of my life.

best,

hbep.



[This message has been edited by hbep (edited 08-18-2003).]

Hi there

Oh dear, we're all a bunch of miserable people at the moment aren't we. I don't know what to advise about the VRT Hbep. I think you'd better ask the experts when you see them in Sep. For now, maybe just take the middle road??

Last night I copied and pasted a long post called "Hbep, check this article out". Well it seems to have been deleted. Maybe it was too long for the board? Anyway, I found this article on tricylclics (and Amitriptylene in particular) and how it is used for chronic headaches so successfully. I then went on to read a whole bunch of other articles on tricyclics and this led me to the decision that I need to go back onto Ami sooner rather than later. So last night I started again. Today I feel so drowsy and dazed but I remember from last time that this should only last a few days or a week. Amazingly the dizziness is really low today. I doubt the Ami has caused the reduction in dizziness as it wouldn't work after 1 night but it feels good anyway. I'd rather feel drowsy and dazed than dizzy!! Isn't that a sad statement.

My thinking is this...if the Ami helps with my chronic pain (neck and head) and my dizziness is caused by my neck, then by process of deduction, the Ami should help my dizziness. The neuroto described the Ami as a 'muscle relaxant' but from my reading last night, what it really does it deaden the sensitivity of pain signals in the brain. This explains why it's so good for chronic pain. It should also help with tmjd which is an obvious aggravator (or even cause!) of the neck and head pain.

What do you think of my logic Hbep? I hope it works. I wish you had a tolerance for tricyclics because with your tmjd symptoms I feel you may benefit from this type of treatment too, assuming my diagnosis of myself is correct (although the neuroto diagnosed it, I have just understood it). Oh well..

Jen

PS. Dizzyblonde, if you have a 'neck' diagnosis too, then maybe this is something you could investigate too? Sorry, I don't really know your history. Cheers. Jen



[This message has been edited by Jen30 (edited 08-19-2003).]

Hi Hbep, just thought I'd throw in my opinions on the VRT as I know you have the same excercise sheet as me.

Firstly just to say that when I first started the VRT I had a couple of weeks of feeling far worse than normal 24/7. Can't say for sure in light of my latest crappy patch whether this was just coincidental or directly due to the VRT, but it did eventually pass and I then felt much better than I had before I started. Although I'm feeling rough at the moment, generally very foggy and light headed, I am definitely better than I was before I started VRT with moving around. I used to look like I had some sort of back problem as turning my head made me spin, looking sideways whilst walking forwards made me spin, etc etc.

I think the order the VRT excercises are in on the sheet is the order you are supposed to do them. I too had a thought that if I started with the ones at the bottom that made me feel really bad then I might get through them faster, but the very simple movements at the beginning are actually the ones you use a lot during your everyday life, and though they seem small acheivements you do notice the effects.

What the Physio did for us initially was make us go through each excercise and record how dizzy it made us feel on a scale of 0-3 (0=no symptoms, 3=severe symptoms). Those which scored a 0 you don't have to bother with, all the others you work through one at a time in order. I was reluctant to do the ones that only scored a 1, feeling that I was wasting time almost, but I was subsequently quite surprised that it could take a week or more of doing that one movement before it did'nt provoke my dizzies at all!

It's definitely no quick fix, but I really think it's worth persevering if you're not getting seen until september. Just don't rush it, start with the first one to make you feel at all dizzy and do it 4 times per day until you can do it for a day or two with no symptoms at all. It's frustratingly slow (I'm still on number 6 after 6 weeks of doing this - I'll still be doing VRT when I'm a granny!!!!), but there's no point in cheating.

Anyway, good luck with it, hope you're feeling better soon xx

Hi there Jen,

They may have deleted the article, Jen, if it didn't state who wrote it - they are big on copyright here. I once had an article deleted for the same reason.

I have to admit in your position I would 100% take the amitriptyline. I think the neuro probably mentioned muscle relaxation as by blocking pain receptors and getting you out of pain, the muscles then relax. I presume that often the tense muscles are a response to pain. At the dental hospital I go to, tricylics are their number one drug of choice for treating tmjd. When I was given the nortriptyline they said it worked as both pain relief and a muscle relaxant. Also, I started to feel utterly dreadful on the nortriptyline about a day after taking it. It could be that if it's already making you feel drowsy it could also already be making you feel better. They say it takes 2 weeks to kick in, but it certainly kicked in far quicker than that for me (unfortunately in the wrong way)

Since my debacle with the nortriptyline, they did a round table discussion at their weekly dental hospital meeting on which drugs I could try instead for my tmjd/ muscle relaxation now they knew I have vestibular nerve damage, sadly the answer was none. After the (thank God now gone) 5 days of tmjd induced facial pain/headache, I am going to talk to them about which straightforward pain killers I can take. I am terrified of making the dizzies worse, the tricylic really did a number on me, but that pain was almost more than I could handle. Id've happily eaten old socks if I thought it'd help. I know you get headaches with your tmjd so I presume you know where I'm coming from on this one.

Anyway, Jen, for what it's worth, I think you're doing the right thing. I know people are shy of taking drugs for understandable reasons, but in certain instances, I think drugs are a great idea. It really does sound like your neuro knows what he's doing.

Definitely let us know how you get on with it this time... And yes I can totally relate to being happy to be drowsy instead of dizzy.

take care,

hbep.

[This message has been edited by hbep (edited 08-19-2003).]

[This message has been edited by hbep (edited 08-19-2003).]

Hi Dizzyblonde,

Thanks for the advice, I stopped doing the rolling from side to side exercise yesterday, actually felt better during the day, although had a night of on a stormy boat at sea sensations.

I think I will do as you say and go back to the beginning of the list. I guess what confuses me is that I only ever feel a little bit off when I do the exercises, very, very slight sense of visual disorientation. I think all of them make me feel like this, none seem to have a major impact. It's later that I get the vertigo. This is what confuses me, and makes me wonder if I am ever going to be able to gage, even in a VRT class, which exercises I should be doing. How do I rate my dizzies on a 0-3, if I don't feel the impact until way after the exercise.

The 9th September VRT date really upset me. Like you, I want to move on with this and don't want to be doing VRT at eighty. It's a long winded process so I want to get going properly now and really feel like I need help. I'm going to phone them about cancellations today. In the mean time I will just persevere with the simpler exercises, it certainly can't do any harm. Maybe I need to try them all again and see if there is any discernible difference between the impact of one exercise over another. I'm guessing the process is complicated by a yrs worth of dizzies - I will have already compensated a lot all round, which might mask the effects.

Anyway, thank you again for your advice. By the way, I am presuming from how you're feeling that you're not back at work? Did you decide what you were going to do about that?

Please feel free to ignore this question, I realise for all sorts of reasons there's certain info people don't want to give out on a healthboard. But as the only other Londoner I know of on the board, I was just curious where you are in London - I am south east.

Anyway, hope you're doing a bit better today, these set backs are such a downer.

take care,

hbep.

Hi Hbep, Mmmm, the delayed vertigo must make the VRT really difficult. My dizziness/feelings of motion seem to kick in almost as soon as I stop the exercise, for example the one at the moment is turning my head side to side five times with my eyes closed. I feel fine whilst actually moving but then stay still with my eyes closed when I've finished and after a couple of seconds my head swims. What is the first excercise on the list to give you any immeditate symptoms?

As for work, no, I haven't made it back yet. I was really gearing myself up to go back at the end of the month and then this bad spell hit and I just don't know what I'm going to do. As I said on one of the other postings, my job is busy 13 hour shifts, day and night. The shifts affect my sleep at the best of times, only now of course when I'm tired, my dizzies are far worse. I also need to be constantly on the ball, and as I know from last time I tried, my ability to concentrate on anything whilst feeling so dizzy just vanishes! It's unfortunately just turning into another thing to stress about. I'm now on half pay - which living in London is no joke!, and am seriously considering possible career changes - although I really need to get back to my old job first as my sickness record is not going to look good!!!!

So yes, a bit of a mess in summary. As for where I live, I'm near the oval cricket ground, Kennington area, south also. Maybe not too far from you?

Anyway, just read your other post about your possible BPPV, hope you feel brighter soon xx

Hi everyone

How are you all doing? We all seemed to go through a bad patch together and I wondered if anyone was seeing the light at the end of the tunnel.

I am feeling better today. It feels like someone switched the light on in my head. What a good feeling. The cotton wool has left and I seem to be able to see better! I am on my 5th day of Amitriptylene and I have to admit that I think I've found my treatment. I was reluctant to think that I would have to take it for a long period of time, but I'm going to give it a go for 6 to 8 weeks. My phsyio suggested I take it for this long. If my next 'good' phase lasts as long as I take the Ami then I'll know. Thank goodness the initial drowsy side-effects have worn off. I felt like a zombie all week!

Hope you have a good weekend.

Jen

Hi Jen,

Fantastic that you're feeling better - it does sound a lot like you've found your drug - how brilliant. Keep us posted.

I have still been in, as you would say 'a shockingly bad phase' love that expression, really sums it up. Yesterday better than the day before, but still gutted to experience vertigo when out at lunch time with a friend worse than I've experienced it before. I was also back to the cotton wool head, weird vision rubbish - yuck. Things seemed to have eased up by the evening again, but I know you'll know exactly how I feel when I say I was just desperate. I had been doing so well, and so far can only attribute it to some ill advised over vigorous VRT (doing easier stuff again now.)

Ah well, don't really know what to say other than I'm trying to keep my chin up. but it's hard. I can tell from how my head/body feels that I'm not out of the woods yet.

I'll keep you posted and definitely keep me posted.

best,

hbep.

Hbep

So sorry to hear that you're still feeling so bad. I know that terrible sinking, despondant feeling. This last bad phase was the worst in terms of how much disappointment I felt after such a long good phase.

I hope you get some good advice at your VRT appointment in September. Hang in there until then.

I went for a walk along the beach today and felt rather out of it afterwards, but still ok. Thank goodness for the good phases. If I was bad continuously I would've given up long ago.

Hope your weekend improves.

Jen