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...
Yes, these types of symptoms can be VERY scary, VERY limiting, and VERY frustrating. There are so many of us on here who know about that VERY well.
You are NOT alone, and in fact, we are close in age (I am 44) if not in distance.
What an odd thing to have to deal with, I know. On the outside, except for maybe looking tired or worn, we look healthy. No-one can “see” how sick and devastated we are feeling on the inside because this isn’t a tell-tale condition, like a broken-leg.
I know that visual vertigo can be a symptom that is associated with the tail-end of dealing with something else. Example: you have an inner ear injury resulting in vertigo. After the injury clears up, you are left with residual symptoms; the result of which can be visual vertigo.
Vertigo/imbalance/inner ear problems can sometimes be difficult to diagnose, because symptoms can be so similar and mimic other types of conditions. And, depending on what type of specialist you may see, you may get a different diagnosis depending on that specialty.
For me, I have been told that I am dealing with, what started out, as a left inner ear impact (maybe injury from exposing my head/jaws to extreme cold), which triggered BPPV (Benign Positional Vertigo) and MAV (Migraine Associated Vertigo). I have been told that I am also probably dealing with visual vertigo as a result.
My symptoms are many, but I will focus on the same ones you have described. I also have visual problems, which consist of EVERYTHING you have stated in your initial post on here, plus other spatial/visual issues that include issues in going from large to small (or small to large) places, like bathroom and shower stalls.
Anything moving or “busy” will throw me or set me off. And as you know, this impacts you not only visually, but physically from how you feel to your balance.
I was housebound for about three months. I stopped driving, and could not be left alone. I just felt so foreign to myself, to my body, to my surroundings. Plus everything was a scary effort. I could not sit or lie still (because I always felt like I was moving), and yet I could not move (because I always felt like I was going to fall over or faint). I could not rest or relax because I didn’t know why I was feeling so odd, and I began to worry about everything related to my health. I did go to work, however I had to have someone drive me, and I could not be alone, even in an office room. There were many days that I had to leave work on account of how I was feeling.
All my tests came back stating I was healthy which made me feel great, but at the same time, left me feeling scared that something was missed because I still felt so awful and everything about me and my life was changing.
That led into depression, of course. And anger, and sadness, and, and, and. I mourned a lot (A LOT) for the “old me”.
It’s human nature to react to something life changing. You can’t help but experience changes when you’re dealing with something impacting, and for many people, these types of symptoms can be a life changing event. For me, this has impacted every aspect of my life.
You’ve received a lot of good replies on here.
Here are the things that have helped me:
With the help of some counseling, I was able to deal with the fears that came with the symptoms that left me feeling so odd and sick. Fear and anxiety can be just as limiting as a medical condition. Once I learned to emotionally react differently to my symptoms and limitations, coping became easier, and I felt less afraid.
Read a good book.
There is a small book called “Hope and Help For Your Nerves” by Dr. Claire Weekes. There are many great tools and supports available for anxiety (I have read MANY), however, this little book became my reassurance when I was out of control with worrying and dealing with my physical symptoms – which triggered major panic attacks. I carried this book around in my purse and kept it in the glove-box of my car.
Move your muscles.
Every day, no matter how scary it is and how awful you feel, do SOMETHING. Walk to the mailbox, walk around the yard, drive around the block, vacuum, pull weeds. Do something. This is HARD WORK. And it doesn’t mean you have to do it all in one day. Just every day, do one thing that is tough and that you are afraid of. Some days, even walking to the mailbox was a challenge for me. And, if you can drive down the street one day, try a whole block the next. My head felt so “off” that I practiced sitting the car and turning it on in the drive way first.
Alleviate stress and get assurance.
For me, I found that worrying was a non-productive way to increase how miserable I was feeling. Any condition that I was worried about because I thought I had it, I brought my concern to my doctor.
There were times when the ONLY thing I could think, eat, talk, sleep about was how I was feeling. At times, there was no-one to talk to (example: I was at work). I carried a regular looking notebook with me at all times, and wrote it in EVERY time I needed to vent. Get it out.
Rest and take care of yourself.
Resting isn’t not the same as getting a good night’s sleep, I realize. For me, sleeping is difficult because of my symptoms. However, you can rest. A cup of hot tea, a bath or shower, a massage, reading something light and airy….some of these things were hard for me with my symptoms initially, but it’s important to rest.
Keep hydrated, eat well, and get rest. Stick to your routine appointments (dentist, ob-gyn, physicals, etc.). Realize your anxiety triggers and work on alleviating or maintaining them.
Everyone has their own ideas and expectations about treating what bothers them. It’s good to get ideas of how to treat yourself, as long as your recognize that not everyone responds to the same treatments the same way. And, it’s always good to talk to your doctor before trying anything.
For me, I got great results with a prescribed medication called Amitriptyline. Within three days my symptoms completely disappeared, however I developed a severe reaction to this med and had to be taken off.
What works the best for me now is two plain 500 mg aspirin, mixed with one teaspoon of liquid children’s cherry flavored Benedryl. This takes the edge off my symptoms, to the point where I can enjoy the majority of my days.
And, when my symptoms are really bothering me, I will put cotton in my ears so that I feel more balanced.
Also, for me, I believe that feeling normal again comes with compensation and honestly, just getting used to my symptoms and feeling less afraid about them. I continue to have symptoms every day on some level. For me, being housebound “forever” was not an option for me because my personality and drive simply would not allow that. Eventually, my frustrations/limitations outweighed the fear of not being mobile, and I had to do something (that’s where counseling came in). There are days where I am limited more than others, but even on my worst days, there is something to be thankful for. That does not prevent me however, from still having pretty rotten days physically and/or emotionally. I still mourn the “old me”, and feel that life is passing me by a lot. But I’m out there.
PS - I want to address Migraine Associated Vertigo (MAV). You stated in an earlier post on here that you don't think it's mirgaine because you don't have headaches. Most people think 'migraine' means 'headache', but 'migraine' actually means 'poor blood flow'. Usually this is due to a spasming or constriction of the arteries. People can have, for example, abdominal migraine. MAV is more or less vertigo and related symptoms brought on by a spasming or constriction of the arteries in or near the brain. Migraine issues can produce a lot of different symptoms, some of them seeming to be neurological in nature. Don't rule out a migraine variant just because you don't have headaches - you don't need headaches to deal with migraine.
Wishing you a peaceful day.
Last edited by Wowwwweeee; 09-27-2008 at 06:46 AM.
The Following User Says Thank You to Wowwwweeee For This Useful Post: fblvr (03-04-2011)
I'm so glad that you are doing better! That is very hopeful.
The diet can make me crazy. Honestly, I am very hot and cold on it. There are some things that I can easily avoid, others that are so difficult. I can do well for a long time and then blow it because I haven't seen any benefit.
I think getting your hormone tests back will be very interesting. I almost did that. Kinda a long story, but the dr I found to do it was kinda weird. Also he charged about $2,000 that my insurance wouldn't pay. Please let us know if any of those are abnormal.
I sounds like you are getting out and doing alot of stuff. Thats great. My kids are begging to go costume shopping. Gotta say I hardly have the patience for it. Maybe thats a good activity with Daddy.
You know, I found my hormone doc (originally a gyn) to be pretty odd as well, but at least I'll have the test results in hand for informational purposes. He did mention (you may well know this) that migraine tends to act up in perimenopausal women b/c they don't ovulate every cycle and this results in too little progesterone. This is why he treats migraine headaches with progesterone (depending on the test results) and magnesium as well.
He didn't seem to think this was my problem b/c my dizziness started abruptly--I went from fine to super dizzy in a flash and have stayed dizzy ever since. However, he did think that some other things looked low on other tests--things that are probably contributing to my fatigue. (dhea, thyroid stuff). I think it's well worth looking into, except hopefully with a doc who is covered by insurance .
Shopping is definitely a challenge, but sometimes it makes me forget my worries b/c I have to focus on all the things around me...
I'm very sorry to hear that you were feeling ill earlier, and I also hope that your daughter is feeling better.
ps: way to go on trying the verapamil!!
The Following User Says Thank You to violet6 For This Useful Post: fblvr (03-04-2011)
Thank you so much for posting in here, while I am sorry to hear you have had to suffer from visual vertigo it is good to hear from someone who seems to be suffering from exactly the same complaint as me, as you do feel very isolated with this. I have read your advice and will certainly be looking further into things you have suggested to me.
My consultant has absolutely no idea why I have developed this as I have never had a problem with my ears in the past and my ears are healthy. I am returning to see him next week and in the meantime I will buy the book you recommended, along with others recommended in posts here.
Once again thanks for posting, keep in touch
The Following User Says Thank You to dizzyblonde24 For This Useful Post: fblvr (03-04-2011)
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.
Hi i also suffer and have done since around 2002 .I find that if im tired and have been out with friends the next couple of days are worse and shopping is a nightmare especialy the buzzing noise from the fridges in supermarkets.......
The Following User Says Thank You to samsarah2 For This Useful Post: fblvr (03-04-2011)
Hi am new to this. I know exactly how you feel. have been similar to you for over 6 months now. I am still not back at work and wondering how I'll ever beable to. Think that reading about other people's experiences is invaluable. I am roughly the same age as you which is why I've posted. I feel as though your experiences are the same as mine. My docors not much help either - he keeps on thinking i'll be back at work in a week and won't sign my sick note for longer than a week!!! I wonder how he would feel if he saw the world as we do know- all surreal ansd moving- if I said back to work !!! It's nice to have someone to moan to and share info. Post back.
im so sorry you are suffering with your dizziness and disorientation, i can sympathise totally. ive had this for 2 and a half years now and can finally say im feeling so much better than i did. i would ask your doctor if he would refer you to a neurologist or a neuro-opthalmologist, although first it may help to have tests to rule out an ear problem. ive seen many consultants and my neurologist has finally been able to help me. ive had so many tests, mri and sleep deprivation tests, all of which have been normal. this was reassuring but at times i thought i was going crazy as no one could find out what was wrong. as a last resort my neurologist started me on migraine medication (pizotifen)in january. it took 3 months before i began to feel the improvement. my eye freezes have stopped completely and my dizziness is at a level that i can manage and cope with. i am now waiting for my final appointment (hopefully) with him and i am hoping he will agree to me re applying for my driving license. i had to leave my job and surrender my driving license when i was ill so im hoping i can drive again and look for work.
i really hope you get the help you need as its such an awful feeling and i dont think anyone can understand how you are feeling unless they too have suffered. these posts helped me so much and made me push myself to go out as much as i was able as its so easy to become a prisoner in your own home.
your doctor really needs to refer you for more specialised help and i wish you all the best. take care and please let me know how you are
Last edited by dizzyblonde24; 04-29-2010 at 05:37 AM.
The Following User Says Thank You to dizzyblonde24 For This Useful Post: fblvr (03-04-2011)
Hi, I am so glad that you are finding some relief. I have been reading through the threads and it is disheartening to see how few people actually find answers.
Mine started in the fall of 2008. I had a period of three weeks or so where I had a fever blister outbreak on my mouth, my nose and inside my ear canal. Then I had pink eye. I was feeling extremely run down and fatigued. Over the next month or so insomnia set in. My appetite decreased and I began losing a lot of weight.
One morning in November I woke up and got out of the bed and the room tilted. My legs did not seem to want to function properly and my balance was off. That progressed and by February of 2009 I had full blown vertigo. I was nauseated, sick and fatigued most of the time but continued working because I have no choice. I went from my doctor to a neurologist and an ENT. Somewhere in the mix the symptoms began clearing on their own and I was symptom free by May. In July the fatigue and strange feeling in my eyes began building again. I frantically began the rounds again trying to prevent the loss of balance and vertigo that would ensue but to no avail. I spent three months with a migraine specialist who was convinced all my symptoms were migraine related, but none of the medications helped. Around this time I also began experiencing chronic tingling in my lower legs and hands as if they were falling asleep. I also had frequent periods where I would be sitting still and suddenly whatever I was focusing on would begin to move in a clockwise motion.
The fall and winter were miserable, but by April the symptoms again cleared. I had a period of 6 six weeks when they were all gone, but over the past few weeks they have returned. In May I had a significant fever blister outbreak on my mouth and inside my nose, and the symptoms began after that. I do not know if they are related. The tingling in my arms and legs has graduated to an awful pulsating feeling, not a throbbing, and it is also in my eyes. I feel that my right eye does not track with my left. I am fearful of getting so bad that I can no longer take care of my kids.
I have had 2 MRIs and three CAT scans since all this began as well as various blood tests for heavy metal poisoning and no answers. I am not crazy, but I no longer have health insurance and am stuck. In any case, it is helpful to know that other people share the same frustration.
"My dizziness and light headedness is provoked by supermarkets, shops, crowds, busy patterns on carpets and wallpaper, traffic, moving clouds..."
I have been dealing with the same for over 5 years and these environments are identical! Do fluorescent lights, computer monitors, dimly lit rooms, long drives (passing by lots of stuff) also cause this for you?
I have been searching forever! So sad to hear your plight, but happy that I am not alone. It's been very lonely at times. Please respond if you can. Thanks.
Hi everyone! Thank you so much for sharing your experiences regarding vertigo, symptoms, and some possible causes -- I am not alone here.
I am 50 and perimenopausal (am regular for a few months and then skip about 3 months with my period). I am taking natural bio-identical hormones, suffer from migraines here and there now (although in 2001-2003 I was taking preventative meds to control my frequent migraines of about 3 a week). After reading a punch of these posts, I am now wondering if my hormone replacement therapy has anything to do with my vertigo??? Hate this -- I am second guessing everything.
I did experience my first bout of vertigo about 12 years ago which was horrible and lasted 6 months of very intense symptoms. I could not wash my hands vigorously in a circular fashion -- felt like my brain was bouncing around in my head. Looking at anything "busy" like a colorful magazine or something on the computer used to make me sick to my stomach. The ENT tested me thoroughly but all came back fine. He strongly suggested I eliminate all caffeine, any added salt, and all alcohol from my diet and said it should help with my severe vertigo symptoms. Believe it or not, it worked, he was right -- much to my surprise.
Presently, I am experiencing symptoms of BPPV which I realized just today. I have difficulty when I look down or tilt my head. Supermarket shopping is not a fun experience trying to look up and down at items on the shelves. I also have experienced some strange eye sensations or pulsating which is hard to describe. I had difficulty reading something typewritten at work and just could not focus on it and kept losing my place. I was getting so frustrated and told my coworker that I felt like my eyes were jotting back and forth causing me to lose my place over and over. Today I read something on which listed some symptoms of BPPV that I have experienced. I have ringing in the ears much more frequent than usual. I also experienced spatial/visual issues that include issues in going from large to small (or small to large) places, like the public bathroom at work. It just made me woozy where I felt like I was going to pass out after making me sick to my stomach. Nothing happened though -- could not wait to get back to my desk.
Two weeks ago, I visited the ENT and he thought it was viral which affected my inner ear causing the vertigo. He offered me Antivert but I cannot take that medicine -- knocks me out and all I want to do is sleep. I cannot function taking that prescription -- can't work or drive with it (tried years ago). The ENT also gave me vestibular excercises but I haven't gotten very far as I get sick to my stomach just doing the first level. After reading some of the other postings, I started taking an over the counter antihistamine called Chlor-Trimeton and it has helped me lots in the last couple of days. Next week I go to my neurologist and then my eye doctor (my vision has changed again for the 3rd time in the last year) so I'm hoping to get properly diagnosed and find some more help.
I appreciate your comments and am open to hear anything else you might have to offer. Thanks -- and I hope you all are feeling better.
Last edited by moderator2; 03-05-2011 at 07:37 AM.
Reason: please do not post commercial websites
The following user gives a hug of support to fblvr: MariaPatricia (03-05-2011)