I am so sorry that I keep feeling sorry for myself but I am having such a hard time with this and I am so afraid I am never going to get better. I am now getting more dizzy in the head, which in the beginning I didn’t really have that, just horrible 24/7 disequilibrium. Now I am more and more dizzy when outside on top of the 24/7 disequilbrium (feels like I’m walking on a waterbed, trampoline, suspension bridge, etc, room shakes sometimes, etc). Today I cried for an hour straight just thinking of all the things I may not be able to do. Like being able to go into my son’s classroom when he starts kindergarten, taking him to the park, the mall, etc. because I get dizzy in enclosed spaces, under fluourescent lights, in stores, even looking at water, etc. I feel like a huge magnet is pulling me down and it is so uncomfortable. I can’t even sit on the g round I feel this awful sensation. Has this decreased for anyone over time? Or do meds take this all away? I am hoping so much to get better, I will never take life for granted again and I will have a huge smile on my face 24/7 when I get better. Honestly I’d rather live with the 24/7 disequilbrium, even though its so horrible, and not be dizzy in the head outside so I can take my son places, etc. Thank you for all the support, this forum has helped me so much.
I don’t think there’s a person here who would tell you that you should apologize for feeling sorry for yourself! The people here aren’t just pity-party folks, and neither are you.
There is an associated disorder called Migraine-Anxiety-Related Dizziness. … I don’t know a lot of it, and am not proposing that you have it, but it is well possible that the whole “thing” – the dizziness, the emotional strain, the feelings of ‘will it ever be better,’ etc – could be simply amplifying an already very difficult problem. I don’t think that’s exactly what MARD is, but…
There are a fair number of people here, I think, who feel the same as you do – genuinely worried about whether they will ever recover – and for folks who’ve had it for quite some time [note: I don’t know how long you’ve had it], I’m sure they’re particularly distressed by the thought.
Perhaps you began with something other than MAV, but that triggered it (there’s a fair amount of talk about this; see the Dr. Rauch 12-question interview, among other things). Or vice versa – maybe you began with MAV and then picked up something else since then. In other words, maybe it’s MAV plus some other balance disorder.
I wouldn’t know which doctors (or types of specialists) you’ve seen, but have you had any vestibular-function testing done (ENG’s, for one) or other tests that look to determine whether the vestibular system itself is damaged / not 100%? That would help determine the source of the problem.
Some people find the problem of dizziness (both MAV and otherwise) resolves without medicine, but that’s unusual. It’s generally a matter of finding the right medicine (or medicine combo); none are 100% guarantees.
I can imagine how you feel, as I also miss all the things I used to do. The worry side of me sometimes dredges up the same fears about what if this never resolves … but I try to push that side back down.
Have you tried experimenting with certain activities to see if any are comfortable? (Or do you notice any times when you don’t feel as bad?) Likewise, can you think of anything that you might have started doing (or not doing) / been doing differently when your condition took a turn for the worse?
That’s concerning (and quite frightening I’m sure); you should make sure your doctor is aware of that, and any info you can bring him (about lifestyle changes, or anything at all - see above paragraph) might help, as he might spot something – a pattern, etc. Try keeping a daily log, perhaps, of your activities, how you felt, and so on…?
Lastly – and [DISCLAIMER] I say the remainder of my post without intending in any way to impose my own beliefs on you or anyone else – there’s never any harm in seeking out support from a church and/or member of the clergy.
I once wrote in an essay that “[People] can deny all they want there is a God, but if they’re wrong, they can’t stop His influence” … and I now use the same logic to say to people [devil’s-advocate version], “Pray, because it doesn’t matter if you’re not religious. If there is no God, you haven’t lost anything except a few minutes talking to the ceiling. And if you’re wrong and there IS a God, then if you ask him to show himself to you, you can be sure he will – he’ll answer people even who don’t believe he’s real!”
Sorry, just food for thought. Like I said, not trying to push any religious viewpoint, just saying that I think there’s nothing to lose for trying, for those who haven’t.
I like your style, George. 
I enjoy reading your posts. I can tell you put a good deal of thought behind them and you express yourself well. I just thought I would throw that in there.
dizzyinaz - I’m sorry you are still feeling so poorly. Hang in there. Have you started a medication? Are you following the diet and getting consistent and sufficient sleep? George’s advice is good. It is important to find some peace of mind. You can do this through prayer, meditation, a bubble bath, or whatever works for you. If you can transition your thought process from a place of panic and anxiety about never getting better to a place of acceptance and determination to find a way to get better you’ll be heading down the path to recovery. I have been where you are in the process. I imagine we all have. The worry and anxiety only make the symptoms worse. And, while it is not easy, it is important to try to find a way out of that dark place. Counseling and medication can also be helpful with the anxiety and depression that often accompany this disease. Of course, we are here to offer support too. When do you see your doctor next?
Hi Dizzyinaz,
Just wanted to say hang in there. When I was at my most actue in this current episode of MAV (3 months now) I was housebound and feeling like death. I literally couldn’t believe I could feel so awful and not just keel over! And I became really distressed wondering what if this doesn’t get better? Well, I can give you hope. I’m now about 80%. The other good news is that for the remaining 20% I’m getting better and better at managing it - learning to “ride it out” and so on. I am sure you will find something that works for you. In the meantime I agree with everyone else here - you’ve got nothing to apologize for.
Wishing you all the best,
Victoria
— Begin quote from “Victoria”
Hi Dizzyinaz,
Just wanted to say hang in there. When I was at my most actue in this current episode of MAV (3 months now) I was housebound and feeling like death. I literally couldn’t believe I could feel so awful and not just keel over! And I became really distressed wondering what if this doesn’t get better? Well, I can give you hope. I’m now about 80%. The other good news is that for the remaining 20% I’m getting better and better at managing it - learning to “ride it out” and so on. I am sure you will find something that works for you. In the meantime I agree with everyone else here - you’ve got nothing to apologize for.
Wishing you all the best,
Victoria
— End quote
Victoria,
What do you think has made you get to the 80% ;level with the condition? Is it the medications you are are taking or do you think it is a combination of that and other changes , if so what are they and what medications are you taking that you feel like have gotten you to this level?
Did you have a lot of anxiety and if so did you take anything for that or did you learn to manage it over time?
Thanks everyone, thanks for the support. 
I go see me new neurologist on Monday so I am hoping so much that the next medication prescribed will help me. If I could just feel normal for part of the day, say like have symptoms ten minutes for every hour, I could handle this so much easier. I also want to feel normal when going out to I can enjoy outings with my husband and son.
I’m so glad Marci and Victoria that you’re feeling so well. I hope that is me soon, I pray everyday for that to happen to me and to all of us.
Thanks George for your support and advice as well,
I pray everday for all of us. This condition is so debilitating and I hope someday in the near future I can get well enough that I can give advice to people that are newly inflicted. I plan on visiting this board forever and help people (even when I get to be 100%, I hope that is in my near future!) because this experience has been so life changing. I will never complain about anything trivial ever again, I’m going to appreciate life so much more, with a smile on my face 24/7. I just want a second chance to live life as normally as possible!
(in response to MarciM)
Thanks Marci, I appreciate that. Actually, it’s helpful to know whether others find my “style” (and actual content) useful or not.
(in response to dizzyinaz)
Well, I’ve tried to get to a point where I find I can both (a) be vocal about my own beliefs but (b) express it in a way that doesn’t come off as actually trying to push it onto anyone. I completely respect people’s choice of beliefs (including the belief that, basically, there is nothing greater to believe in) so I try to put forth my idea in a way that simply says “food for thought.” Far as I’m concerned, people can say to me anything from “That makes sense, I haven’t thought of it like that before” to “I think you’re full of baloney, so hush it” – equally valid responses!
OK, that was definitely a tangent but just putting that there “for the record.”
Anyway, mine wasn’t exactly the best-written post I’ve ever done, so I hope you might be able to find SOMETHING of some practical use in it. (I for one have looked at it again and can’t find much…!)
Hi Timeless,
I’m not sure if my 80% better-ness is because of the Prothiaden or would have happened anyway. Before finally getting diagnosed and medicated these episodes of mine would last about three months and then just sort of fizzle out. This time however it was a WHOLE lot worse before getting better. I’m inclined to attribute that to the Prothiaden as previously I would get 100% better so I suspect the Prothiaden is still just supressing the worst of it.
I appear to have no self discipline so have, ahem, not made any dietry changes. I have been better with sleep routines but on Saturdays I’ll sleep in half the day - it’s like I am paying off a huge sleep debt from the week before.
As for the anxiety - it would (and still does) just come out of nowhere. Hideous. But it too is now about 20% of what it was (so maybe also supressed by the Prothiaden) and I’ve learnt it’s not that I’m feeling anxious per se, it’s migraine. So I don’t get anxious about the anxiety if you get my drift. I’m even weaning myself off Valium unless I really really need it.
While I’m happy enough with 80% I’d obviously like 100%. In a few weeks though I go on holiday to NYC (from Australia) so I don’t want to upset the applecart and start experimenting with new drugs (and side effects) until I get back.
Hope that helps answer your queries…?
George,
I love your posts too - sometimes I laugh out loud. I suspect you are great company in person. Please keep it up!
Cheers
Victoria
Dizzinaz,
Today I cried for an hour straight just thinking of all the things I may not be able to do.
I’m so sorry to hear you’re having such a crappy time. I know it’s hard to believe while you’re in the thick of this misery but you’ll come good – I can promise that. There’s such a fine line bewteen this garbage making us feel horrific and then suddenly it can all be ok again. Your head is under water at the moment … it won’t stay this way. I had all of the stuff you’re describing day after day at one stage. If I tried to ride a motorcycle or scooter, I too couldn’t even sit on the ground without feeling crazy. But it all went away and is now very manageable and not nearly that bad even when unmedicated.
George -
“If there is no God, you haven’t lost anything except a few minutes talking to the ceiling.”
You gave me a great laugh and made my day. You should be writing comedy!
Scott
Thanks Scott, thanks for making me feel better.
Hi Dizzyinaz
Just also wanted to say that you will feel a lot better and you will be able to do all those things you want to - taking your son to kindergarten and going into his classroom, taking him to the park etc. In my mind you are going through a very acute phase of MAV, and it seems to happen that it gets worse and worse but then it’ll improve. With the swimming pool analogy the water level is right on your head and keeps overlapping, but you are doing all the right things to bring the level down, it’ll just take a little time for you to notice a difference because the level is so high at the moment and the water keeps sloshing up.
You are coping really well, although you may not feel like it. You are getting through each day and each day will bring you closer and closer to when you are feeling a whole lot better. So many of us here have been at rock bottom with this, but we have improved - and you will too.
And the other very positive thing is that you have a diagnosis so you know what it is. Let us know what the Neurologist puts you on tomorrow.
Do you think you could do something like have a massage or a manicure, something nice for yourself? The other thing that has helped me to cope is that I’ve started going to a meditation class. You may not be able to get to one but there are cds you could buy or listen online? I’ve found that meditation gives me a lot of peace.
Best wishes, Tess
Thanks Tess, thanks for making me feel better.
I try picturing myself completely healthy again, laughing and watching my son play outside. I do this right before I go to sleep. It helps me but then when I wake up the horrible symptoms start and I start to get so sad again. I just hope I get a second chance at a normal life one day (or even close to normal life).
That’s great about the meditation class! I’m glad it helps. I’ll have to look into that.
Dizzyinaz,
Hang in there girl! It’s been a rough few weeks but you’ll be okay. I hope your appointment with your new neurologist goes well for you. Finding a good doctor is so important …I hope this one is THE ONE! Hopefully he/she will get you started on the path to recovery. You’re doing everything you can and taking it one day at a time and that’s great. Let us know how your appointment goes.
Best wishes!!
Thanks Colleen,
I sure hope this is the right doctor for me! I hope whatever meds he starts me on, I’ll start to improve!
dizzyinaz, I just want to tell you that I was in the exact same boat as you just last year. I cried and cried daily just thinking about everything I thought I would never be able to do again. And then I got better, MUCH better. I still don’t have the guts to get on a plane or on a cruise ship, but I drive up to 2-3 hours away for trips, I go out anywhere I want, I take my kids all over the place, and I run a haunted attraction full time and spend most of my time building custom props and scenery for the haunt. I still have some residual symptoms but they are not controlling my life anymore and I’m not crying anymore. You will get there. Topamax saved me as I was diagnosed with MAV. I think MARD fits perfectly for you as suggested above. Who knows, if I got on an extra anxiety med, I could be 100% instead of 90%, but I’m happy here for now. The dizziness you are experiencing out in public places on top of your already 24/7 dizziness could be two things. It could be anxiety-related dizziness and you’re not aware that this is the cause, OR, it could be visual sensitivity causing increased dizziness, and you are more likely to experience this in “busy” places like the mall, stores, etc. Just something to consider. You will eventually get your symptoms under control. What meds have you tried? What are you thinking of trying next? Effexor might be a good choice because it kills anxiety and migraine at the same time, even if the anxiety is not apparent. Plus, it’s just a very strong migraine med. I’m on Topamax right now and that worked for me about 90%. Hang in there, it’s GOING to improve. I thought I was going to die, I swear to you. Others here can attest to how bad I was. I would have insane attacks of dizziness on top of my 24/7 stuff that would put me on the floor (not miniere’s) and it scared me to death. I couldn’t blow my nose without having an attack (not superior canal dehisence. It was all MAV, just really bad). All of that is gone on topamax. You’ll get there! I have 2 year old twins, so I understand your concern. Now I’m back to taking care of them again! You will be too!
Rich
Hey there -
I am so sorry you are feeling so terrible. I know EXACTLY where you are coming from and when I first came down with this I was sure I would never be able to ever do anything with my kids that I had dreamed of doing. My story is very long and not one that you’d want to read at this point, but I had a major anxiety crash in January of this year. I was so freaked about my health and how I was going to take care of my children, that I literally could not function. I have anxiety anyway, but this condition has certainly made it worse. The first thing that I had to do was get to work on the anxiety. My neuro and my psychologist both agreed with this and I got onto Paxil. I totally got control of my anxiety and my sleep and that made everything better. I was in despair and did not believe that I would ever get better again. Being on an SSRI has taken that fear away. So i don’t know if you are on one now or not, but I would recommend really looking into it if you haven’t.
Take care, and I’ll be praying or staring at my ceiling for all of us as I go to bed in a few minutes.
Molly
Rich - thanks for sharing that. It was extremely encouraging. I have been very ill with this for almost 2 years, and am very hopeless at the moment. You gave me hope that if I just find the correct med things will start improving. Did your symptoms improve gradually or abruptly with the meds? Did you try anything before the Topamax? Did you used to experience disequilibrium? that is my most disabling symptom by far.
Thanks Rich, Molly, thanks for making me feel better.
I’m so glad you are feeling well again. That brings great hope to me that if I find the right med, I can improve!
— Begin quote from “MAVLisa”
Rich - thanks for sharing that. It was extremely encouraging. I have been very ill with this for almost 2 years, and am very hopeless at the moment. You gave me hope that if I just find the correct med things will start improving. Did your symptoms improve gradually or abruptly with the meds? Did you try anything before the Topamax? Did you used to experience disequilibrium? that is my most disabling symptom by far.
— End quote
No problem at all. It’s important to know that people are doing ok with this beast. I used to cry every day thinking I would never even walk normally again, or experience normal movement again. I still have a 10% visual deficit which I explain in another post but if you want to know the horror of this thing, I’ll list my symptoms. I really hate to even go through them they were so horrible, but for the sake of you knowing that your going to be ok as long as you don’t give up and you keep persuing this thing, I’m going to do it. Here’s the awful list:
- 24/7 feeling of rocking, swaying, feeling like I’m walking on a sponge, trampoline.
- periodic feelings of “falling”, being “pushed”, just after walking a few feet.
- 24/7 light sensitivity, requiring 24/7 sunglasses, even at night.
- valsalva induced dizziness, on top of the 24/7 sense of imbalance. This was horrorfying. If I would blow my nose, or go to the bathroom the wrong way, I would feel like I am walking on top of a ferris wheel and I would literally walk right into the floor. I would be unable to know up from down, left from right, and I would be “thrown” in various directions when trying to walk. Head motions would exasperate this. So if I didn’t keep my head 100% still, I would be in for one hell of a ride. When I would get these attacks, they would last about 10 hours, and I would get them several times a week. I was afraid to leave my house.
- periodic “vibration” feelings in my head, that eventually turned into a 24/7 feeling that never left. It was as if someone was putting a vibrating mechansism to my head.
- Insane visual sensitivity. I was unable to look at anything moving, or anything “busy” without becoming very dis-oriented. This meant no video stores, grocery stores, malls, crowded places. I couldn’t even navigate my own house as just looking for something was impossible. It was as if my brain could only scan one item at at time and “multi tasking” became impossible. It was like putting side blinders on me.
- Contant feelings of nausea, fatigue, light-headedness, and brain-fog. I couldn’t even think straight. I would stare off into space.
- Periodic INTENSE feelings of “detachment”, “out of body”, “derealization”, for a lack of better terms. It was as if i was not in my own body.
- the entire world appeared to shift around 24/7 - up, down, left, right, and only went away if I moved or drove a car.
- Insane motion sickness and I could not be a passanger in a car. I had to drive.
- I could not handle any excess motion at all. Not even my dog jumping on the bed. It would set me off.
- I had NO breaks in symptoms. This continued straight for 10 months until the topamax kicked in.
I’m sure there are some other symptoms but I really don’t want to remember them. It was the most horrible time in my entire life. But, they ALL went away on Topamax except the appearance that everything is slightly shifting. I’m dealing with that and it’s not the end of the world. Some day I’ll get to the bottom of that. Other than that, it’s all gone
I started Topamax in May of last year. I had NO benefits until around September. I suppose that the results DID come on gradually. The symptoms at first were just less and less intense, and then by October, they were a lot more manageable but I also had days where I started to feel a little more normal. By November, I could go 3-4 days with no symptoms, and then relapse for 3-4 days. By December - January, I was having 1-2 weeks symptom free, and then a relapse of maybe 2-3 days. Now, I can go 3 weeks or more with no symptoms, and then relapse very slightly for about 3-4 days and then I’m fine again. And my relapses consist of a little light sensitivity that makes everything look a little funny. And everything appears to shift around just a little bit more. That’s my relapse. I have no other symptoms.
Before the topamax, I tried klonopin, depakote, xanax, elavil, and effexor. However, be advised that the ONLY med listed there that I stayed on longer than 1 day was the xanax, and I never took enough to accomplish anything. All of these meds were too strong, even at dosages that were below the starting dosage, so there was no way I could get on them. So I can’t judge weather or not they would have worked. All I know is, I couldn’t get on them to find out. Topamax was the only one I could get on that didn’t put me in the gutter completely. I suffered the entire time on my titration with my symptoms and some side-effects but now, I have no side-effects from the med and my symptoms are 90% gone. I DO do some other things, like keeping my Vitamin D level up (hormone), I keep my blood sugar balanced throughout the day, and I get my sleep every night without fail. So, I give the topamax some help. I don’t cheat on the diet - no chocolate, no caffeine, no msg, no junk food ever, so, I’m as pristine as I can be. that may be lending to the results too, but topamax is by far the super star here. I hope this has been a help. Just remember, I thought I was going to die, and now I’m back to building my haunted attraction, taking trips (not on a plane or cruise yet, but that’s in my future), and I do what I want without worrying about it. I found my med. You just need to find yours. If I can recover from that NASTY group of symptoms, there is no reason why you wont. None at all. Keep trying, stick out ANY med that doesn’t put you on the floor, and give it a full 3 month trial at least (topamax requires 4 months though). This way, you don’t accidently miss your gem!
Rich