I would like to share my story in the hope that someone somewhere can help or advise me as I am at a loss to know what to do now....
I have suffered from continual dizziness since December 2007 and I am losing hope of finding a solution to this.
Initially this started in January 07 when I had occassional bouts of dizziness with a strange sensation behind my eyes and my vision seemed to go into a freeze frame kind of effect. These periods only lasted for a few minutes, but were very frightening to experience. Over the year they became more frequent until December 07 when the dizziness became continual.
I have had various tests done at hospital, ENG and visual evoked potentials, where everything has come back clear and I have been assured my ears are very healthy.
I have been diagnosed with visual illusional vertigo. My dizziness and light headedness is provoked by supermarkets, shops, crowds, busy patterns on carpets and wallpaper, traffic, moving clouds... I could go on and on. I have been told that this will not be cured by any form of medication.
I am currently undergoing vestibular rehabilitation, which consists of various eye exercises and head movements, but so far these have not helped my symptoms although I am persevering and continuing with these.
I have tried acupuncture and am also in the process of trying homeopathy. I really will try anything to try to aleviate the problem.
On reading some of these posts in here, I felt I had to join as it was wonderful to know that I am not suffering alone. I have been virtually housebound since January and can only go out if accompanied. I cant go to work, cant drive and feel my life has come to a complete standstill. Im 43 and the thought of being like this for the rest of my life makes me feel so upset. Ive lost my confidence and my happy go lucky nature is deteriorating along with my quality of life.
Im lucky in that i do have a very supportive family but I do find it difficult at times when some people tell me that I look so well, as if they really dont believe me. I have no scar or no proof of what I am suffering and I think thats what makes it difficult for some people to understand.
I would be so so grateful if anyone could offer me any advice or tell me of their experiences. Has anyone else got a similar problem to mine, I would love to hear from you if you have.
The Following User Says Thank You to dizzyblonde24 For This Useful Post: feather1 (08-13-2012)
i dont usually post on here but i read your message and it sounds exactly like what happened to me. I started getting dizzy/vertigo spells about five years ago which gradually got so worse it felt like everything was moving around me constantly. I had to leave work and was housebound for months. I was intially diagnosed with labyrinthitis and had a load of tests including ENG and MRI head scan. However nothing showed up.
As i was so anxious/down at the time i was put on antidepressants (effexor, then cipramil) which made me feel panicky and awful so is i didnt take them again. Since then i've gradually managed to reintroduce myself to life. I've spent that last 4 years back to university. I'm not saying my life was perfect before this all happened but it makes me sad to think i used to be so carefree, i dont do a lot of the things i used to i.e. going out with friends, drinking travelling etc (i'm only 25). I am lucky though that i have a very understanding partner who has stood by me through all this.
Recently the dizziness and depression has really started to get to me again, i think its because i've started work again and now have the added pressure of that to deal with. I also normally get very down over winter anyway and am really worried i'll get worse again. I really want to try and get better and am thinking about trying st.johns wort now, the thought of medication terrifies me though.
I'm sorry if i've worried you at all, i expect some people do make full recoveries in time, i guess everyone is different. Sometimes imagining what life would be like without the dizziness is the only thing that keeps me going.
I'm sure you will find out what works for you and one day get better. It has certainly made me feel a bit better knowing there are others out there with the same problems (and in the UK too!).
Last edited by gezbutler02; 09-25-2008 at 06:05 AM.
I am sorry you are here on this board. It is a horrible way to feel.
I have had this for about 3 years. I have a dx of MAV. Migraine Associated Vertigo. It started out as quick feelings of falling side to side. Then one day I turned around and brought me to my knees. It has been with me ever since. Nothing has looked the same since that day. My biggest issue, besides all the visual stuff is that I have trouble with my balance. When I walk I can only go short distances without having to rest. Its kinda like I have to give my vestibular system a chance to catch up. At time I have horrible anxiety as well. I also have alot of neuro symptoms I am 41 and feel the same as you. I can't believe how easy my life was before and I was too caught up in it to realize that.
There are medications out there that really seem to help people. My advice would be to see a neuro-otogist if you have not.
Please know that you are not alone. There are people on this board who understand and are very supportive.
i am sooooo sorry you have to deal with this. your story sounds similar to my own. I am 36, this whole head/anxiety/vertigo thing started when I was 32. Hard to believe its been 4 years of dealing with it. I have tried many things: VRT (not sure if this helped and don't understand if it helps or aggravates migraines?, but I was first diagnosed with BPPV)
Regarding what has helped me most:
Homeopathy: what remedy are you taking? I am currently on phosphorous. Seeing a classical homeopath. Tried many different remedies, all seem to help at first but then start to aggravate. they say when you find the right constitional remedy at the correct dosage everything will switch. I have just switched Homeopaths to an MD/Homeopath, expensive, but she is more aggressive in her dosing. Point is I think the homeopathy has really helped, even when the remedy was not totally right. She is commited to helping me even if we switch from homeopathy to meds
Acupuncture: energy levels and anxiety helped with
Supplements: Try to keep my body as health as possible cause it is under stress. B12 shots, my net step is to work with someone who understands hormones and to get those in balance. GABA and Theanine have helped tone down the daily anxiety
EFT (emotional Freedom Technique): I will try anything, this is weird but helpful. I use it for anxiety and just trying to get threw the days
Osteopathy: I am working with a very interesting osteopath. he is trying to reconnect the pathways (energetically speaking) between my cranial nerves and other parts of the brain. I have been shocked by how much this has helped my eyes (which bother me most of the time). Not holding yet, but I can feel some shifts.
I have spent a lot of money and created a lot of debt in all of this. But I feel to young to just live with this forever. So like you I will keep trying.
Not sure about MEds, the stories on the board regarding peoples experience are up and down I know how sensitive I am. I am not attached to the alternative methods, I've never been able to take western meds even before all this stuff.
Try and stay positive, and as "normal" as possible. Its hard but you just got to keep trying and focus on other things. I keep thinking it will get easier.... but somedays are not as bad as others :0)
thanks for your reply, im sorry to hear you are having a rough time with your dizziness too. Do you think stress makes your dizziness worse as I have been wondering about this too, having a very stressful job, from which I am on sick leave at the moment. I wish you luck trying the St Johns wort and would really appreciate it if you could let me know if its successful.
best of luck
thank you for replying to my post and i am sorry to hear that you are having problems with your dizziness too. As I have previously asked G do you think this can be anxiety related? I used to suffer from migraines when i was younger and did think they were returning at one stage but decided it was a low blood sugar so your message has been really helpful. I agree with you that you dont realise how good life is until you are experiencing this and I wish you well
thanks very much for replying and im sorry to hear you have suffered for 4 years with this, thought almost a year was bad enough. I have not received my homeopathy medicine yet but it is expected to arrive in the next few days. I saw him on Tuesday and he studies everything I told him to find a solution so i live in hope....
Also interesting to hear about hormones and vit B12 shots as this has been mentioned to me elsewhere and I think this could be something I need to look into further.
I agree that we have to try to keep a positive but some days it just becomes so overwhelming.... but i keep trying.
Thanks for your help
Hi there and welcome to the board. I think it is very likely you are dealing with migraine associated vertigo. It is one of (if not the most) common causes of benign recurrent dizziness. MAV and anxiety are connected for many people, although anxiety on its own can cause a transient dizzy feeling(not true vertigo though). As CK said, the best person to see is a neurotologist to rule out inner ear issues; some neurologists who specialize in headaches are also aware of MAV, but many are not clear on the many different ways it can present.
DB24, I'm sorry you are dealing with this, although at least for you, you managed to make it all the way through your 30's and into your 40's before it hit you. I got hit at 32, and there are some of us here who have been hit in our 20's!! It's pure hell!! So we understand completely.
As far as anxiety goes, it can trigger this migraine associated vertigo, which is what I believe you have, but anxiety is not "keeping it going". The anxiety causes some sort of chemical cascade or some sort of change, and once that happens, the change can become semi-permenant. Medications, time, suplements, hormones, ect, can help restore the balance but it's extremely tricky as to what will help. Everyone is different. The problem with most doctors is that they insist on treating you for something that is not the long-standing problem. They want to treat you for the trigger. That won't work. They have to treat the end result - the migraine associated vertigo. And as Violet said, the best type of doctor is a neuro-otologist.
Now, onto the more important things for you. You talked about being housebound. Listen to me carefully. I understand what you are going through. I was bed-ridden for the first full month of this, and I was virtually housebound for at least 3-4 solid months after this, only leaving the house for doctors appointments. I was losing my ability to drive day by day, the visual sensitivity was getting worse day by day, the anxiety was getting worse day by day (which was worsening the chemical imbalance), and in turn, the dizziness was also getting worse. the less you do, the less you will be ABLE to do. I guarantee it!! This all started for me back in January '08. I got to see 23 days of 2008 being normal. On January 24th, I woke up with migraine associated vertigo and that was it!! A month after the initial crisis, and my brain began to compensate somewhat, I tried venturing out to the supermarket or to a video store. After being out for only 30-45 minutes, I would literally be wiped out, and would have to sleep for 7-8 hours, even if it was in the middle of the afternoon. I thought I was doomed!! My MAV was, and still is (depending on how you look at it), extremely intractable! It never leaves, and it is extremely visually disorienting. Early on, if I would walk more than 8 or 9 steps in a row, I would feel like I was being shoved, or I was going to fall over. I would feel like I was constantly rocking and swaying, and the world was constantly shiftin and moving (still is!). I tried to stay behind the wheel even though the visual sensivity was high, and I would get naseous and sick. I had to stop being a passanger but I refused to stop driving. I forced myself to go to the most visually disorienting place I could find ---the mall!! I went once a week at first, for only 30 minutes. Then it was twice a week. Then it was three times a week. I suffered the whole way. And my MAV wasn't getting better. Then the spring came. But I noticed something. I was building a tolerance. I could go out, and when I got home, I didnt have to sleep for 8 hours after being out for only 1 hour. I run a haunted attraction, and in the spring, we usually start building. I usually build 10 wall panels a day. I started building 1 panel a week. Then 2. Then the summer came. By this time, I was wearing sunglasses 24/7 but you know what? I wa stablizing. I was able to handle a full day. yes, I was dizzy the whole time but I could do anything a non-dizzy person could do. Then, I took a big chance and went on a mini-vacation 2 hours a way,....by MYSELF!!! I lasted the whole weekend and when I came home, my world started to open up a bit. I went from housebound to going out every day, doihng what I want, and being active again, but yes, living with the dizziness. I helped put up my entire haunted attraction, doing heavy manual labor outside for 5-6 hours with no break, in the hot sun, walking up and down large hills, and on some days, I never even felt it. There were 18yr olds who complained after 5 minutes. I was finally getting myself back in shape after months of being sedentary.
Today, I get up at 9:00am, I get in a full day of taking care of the kids, working, playing, doing what I want, come home, relax, go to sleep, and I start over again. Everything a normal person does. However, I deal with the dizziness. I have no more anxiety than a normal person, which I think proves to me that there is a physiological component to this brain issue, but don't get me wrong, I want the dizziness gone. you can read a post of mine just several posts down where I say I can't take it anymore. And believe me, I can't. BUT, I CAN do what a normal person does. Nobody knows I am dizzy. I don't act dizzy, I don't look dizzy. But, there ARE certain things i can't do. I can't go on amuzment park rides, I can't spin in circles, I can't play any sports because of the quick movements. But other than that, I can do most of what I did before. And I am only on 50mg of topamax, which is only half of the therapuetic dosage, so honestly, I don't even believe it is what is protecting me. I believe calming down, and pushing myself a little at a time is what did it for me. Trust me though, I fear the winter. That's when I got sick last time, and I have no idea what will happen this winter. I am trying not to get sick. I am trying be positive, stay busy, etc. It's amazing what damage the brain can do to you, but it will only be worse if you do NOTHING. So if you are housebound, get out of the house and force yourself to walk. If you don't, it will only get worse. Someone else told this to me once. And I was starting to become exactly what she said I would. Now I have reversed it, and I am living my life as best as I can. Not bad for 8 months later. Some people are still dealing with major dizziness 4-5 years later or more. So I think my active lifestyle is what is doing it for me. I am not taking any vitamins or anything. They actually make me feel worse. Anyway, my advice to you is to get moving!!! Your brain needs it to get over this!
Hi Violet and Rich
thank you so much for your helpful advice, its great to get feedback and advice from other people suffering from dizziness. I really didnt think I had MAV as i dont suffer from headaches but i guess different people suffer in different ways so this is a possibility I hadnt thought of.
I take on board what you are saying Rich about getting out and forcing yourself to do things. At first I put off going out to places that made me feel ill but i have been trying to make a huge effort to do this, altho not alone yet, but I know i have to try this also.
As you all know its difficult to put yourself in a position that makes you feel so much worse and its so easy to hide away, but if thats what is required to improve my dizziness then I am going to have to try harder to get myself out.
Thank you so much for your help and advice and I wish you both well
Wow. I am thrilled that you are doing so well. Good for you!! You pulled yourself out of it.
I agree with what Rich says. Yes I think anxiety play a part, but it is not the cause. There have been times when I have been in bed for weeks. I still have that but not as often. In the very beginning of this my brother-in-law gave me the best advice of my life. He said I don't care how you feel in the morning, get out of bed before your kids, take a shower and look presentable, and whatever you do SHOW UP AT THE DINNER TABLE EVERY NIGHT, you dont have to eat, but be there. I have stuck to that. Sometimes my hair is in a ponytail, sometimes I'm at the table for 2 minutes. I do what I can and push myself when I can. There are things I have tried to do like walk at the mall. I positivly can not do that, but I can order on line. I can't walk around my block, but I can walk in my yard. Hopefully those things will come. Hang in there. It is very hard, but you can do it.
Hi dizzyblonde. sorry you are dealing with this. i just wanted to also assure you that you aren't alone and are at the right place for support here. i just wanted to agree with what rich posted. i agree with it 100%. i have been living with this for 16 months now, the first month bedridden, and the next few i could hardly do anything. i literally had to force myself to go back to college cuz that is where i get money to survive, my part-time job doesn't do much lol. but let me tell you, getting myself slowly back to work and back into the college routine definitely helped me over the long run. i'm not normal yet, but definitely fuctioning on most days on a decent level. of course, there are bad days and pity days, but they are few and far between what they were over a year ago.
so basically, i guess what i'm trying to say is, that try your hardest to get yourself out to do things. do them slowly at first, and work yourself up little by little. i found the feeling of accomplishment with that is a huge positive boost with this mess. i would also, as most recommended, see a good neurotologist to get some tests and maybe a possible diagnosis for some treatment.
DB--you might want to check out the book "Heal Your Headache"--it has been recommended to most of us on this board and it explains why and how migraines make a person dizzy, as well as cause lots of other unusual symptoms...
thanx for offering your support and im also sorry to hear you are suffering too. yes i know i have to push myself to do things that make me feel ill and believe me im gonna try so hard. its inspiring to see how other ppl have made such an effort and i will too
i wish you luck alex
take care and keep in touch
yes i so agree with you that no matter how much you try there are going to be things you cant do today and i so can sympathise with you there and we just have to try again another day but its so so difficult. funnily enough i feel best when im at home but its when i go into buildings mainly shops that i feel worse than anything. ive lost my confidence through dizziness but mostly because of the freeze frame effect of my eyes because when that happens i just cant see for a few minutes so i know that driving is definately a no no for me at the moment.
take care and keep in touch
I also feel much better in my home. Still sucky, but much better. I can't go to my kids school, because the lighting does me in. I have trouble at the grocery, stores, resturants. Usually the only thing that makes me feel better is a car ride. I can drive. It seems to help my symptoms. Of course there are time when I can not and don't.
Make sure you get the book Violet told you about. It is great. Take care!
You are so kind to ask! I'm doing better these days...maybe 65 percent pretty steadily. Got lots of blood tests this week, so I'm looking forward to learning if they show anything (have to wait 3 weeks though!). I'm just curious about if my hormones are starting to get funky and/or if my stress hormones/thyroid are ok, etc. Still doing VRTs and taking supplements. I so wish I could travel up to your neck of the woods and talk to Dr. Hain in person; of course, then he might insist I try some new meds!
Today I really pushed myself almost too much...I was craving a Starbucks coffee drink (doubleshot not decaf) so I had it, which of course made me feel super anxious, and then I took the children costume shopping--what was I thinking! I then proceeded to eat freshly baked bread, high fructose corn syrup, some cheese, (and peanut butter earlier)*...and I've been on the computer for hours. All in all, I don't feel too badly, but the caffeine was really not a good plan.
I know you know what I mean when I say I just want to get back to having normal days so badly! I am amazed that you have four youngsters to look after...that is a feat in and of itself. Are you doing OK? I can very much relate to not being able to do more than walk close to the house. Do you feel wobbly or just weird/motion sick and exhausted? I was more the latter. Anyway, I'm hoping the verapamil does the trick for you as it has for so many others.
Please let me know how you are doing!
*Don't you find it difficult to avoid all the staples that are on the diet? Arrghh.
Avoiding the staples on the diet is SO hard! It might be easier if I really noticed that avoiding all the triggers was helping. My diet prior to this was probably about 80% triggers; I ate cheese, chocolate, aspartame, non-dairy creamer and citrus fruit almost daily, and peanut butter, nuts, dried fruit, lunchmeat and other processed food almost as often.
What I also find hard is eating out...I don't think any fast food meets the non-trigger criteria on some level, and even chains like Olive Garden and Chili's probably don't meet the grade either.
I used to get much more pleasure from my food, and I wonder if the stress of avoidance can add to our symptoms as well...