I have been experiencing dizziness and disorientation for almost 2 years now.
It started as dizziness, the room was strange not quite spinning, i would have trouble walking as i felt like i was walking sideways or floating and going to fall over. (thankfully i haven’t) i would have next to no concentration and poor memory probably because i was too caught up in what i was feeling. I feel like i am living in a movie or a dream its a strange feeling that is hard to explain.
I have trouble in the dark, i suffer very bad visual snow day and night and lights really really anoy me especially fluro or flashing lights.
I see large hazy aura’s around lights and spikes of lights coming around them.
I virtually stopped driving for the past almost 2 years as i feel so disorientated, almost tired and a vertigo feeling mixed together…smaller roads are ok, but the large freeways make my head spin especially with the dashed lines. As a passenger i am ok as long as i look out the window not at the dotted lines on the road or interchanging traffic. I think this is all compounded with by panic as i feel out of control
Night driving is out of the question.
i have trouble standing and talking to people, the world starts spinning. i hated crowded shopping centres… and the shopping ailses (spelling). And i noticed im affected more by heat.
I have seen Neurologists, Opthamologists,the balance clinic, have had tests such as CT, MRI, that awful water in the ears to make me dizzier (took days to recover from that) blood tests and many others to rule out BPPV, epilepsy, balance disorders etc and the results were clear. The conclusion that the Neuro came up with is that i suffer from “Painless Migraine” stage one and two of the migraine however never reach the headache stage, they apparently can be constant and last years and suddenly clear up. which would explain why i am still in the same situation.
I have tried a few meds such as Epilim, sandomigran, Topomax all migraine and epilepsy drugs trying to combat and stop the symptoms, I haven’t seen my Neuro in over a year, i saw another in Jan but they keep saying take the medications, go off this one try this one now try meditation to relax AHHHHH!but the made me feel worse so i stopped taking them and seeing the doctors.
To be honest over the last 6 months it has eased slightly especially walking around (unless i have naturally adjusted), though i still have not regained my full driving ability, which is inpacting my family/work life.
After my long winded story which i am sure i am not alone with, i am at the point were i NEED to drive for a new job, (i have already turned down 4 similar roles). So does anyone know any really good compashionate Neoro’s in Sydney Australia that have a clue with painless migraines. Or Physio’s i was thinking maybe VRT exercises may force me to cope better? Or a drug which won’t turn me into a vegitative state?
I know i am asking alot but and advice is very much appreciated.
From what you describe, I would have to say that you doctors are right. Your description matches many of our symptoms. I live in the US, so I can not give you any advice on doctors.
There are many migraine preventative meds, and almost all of them have nasty side effects for various people and almost no side effects for others. The side effects are also known to subside after a given time if you can get past it.
Things that I have found that have worked for me in the past before I started taking meds were: excercise, diet, vitamin supplements. You can do a search on the internet for the migraine diet. For supplements, I have found that magnesium helps. Also, try to get on a strict sleep schedule, trying to go to bed and rising at aproximately the same time every day. Also try not to get to much, or to little sleep at night. I also find that a nap in the middle of the day or when I get home from work seems to help as well.
Well, I hope something here helps you get by until you manage to get in to see a doctor.
I’m from ‘Oz’, Sydney Australia, and have been diagnosed with MAV or in Oz terminology - Migrainous Vertigo. I’ve been through the MRI process and seen the Ear Nose and Throat specialist for the nasty little dizzy test with the water flushing through the ears and following the little red light!
The ENT specialist ruled out Meniere’s disease although there are overlapping symptoms and then he referred me to a neurologist at Prince of Wales Private Hospital, Randwick who specialises in dizzy/balance disorders.
When I visited the neuro, he said he has consulted on thousands of migraine cases and that the somewhat rare form of migraine condition, called Migrainous Vertigo, he would consult about 4-5 people a week like me. I was so relieved I cried. The tabs you have taken, are very similar to what I am currently on. I take epilepsy tab Rivotril (clonazapam) and Sandomigran for migraine prevention (but I take 7 per day at the moment, and strictly under specialist supervision!!!). I can’t really confirm that they have been successful, but the neuro did stipulate that he felt I would recover well, but that it would need to run its course and he could give me no definitive time (most exasperating!!).
He also sent me to an occupational therapist who specialised in dizzy disorders at Prince of Wales Public Hospital who was absolutely fantastic. I can recommend the vestibular therapy, I’m now swimming 1/2 kilometre daily, 7 days per week and seeing where that might take me.
If you are interested in the neurologists details, let me know and I’ll post them for you. He’s very calming and understanding and has had enormous experience in this field.
Keep us all posted, we’re all in the same ‘rocky’ boat and trying to weather the storm. I am told there is light at the end of the tunnel (hope the light isn’t too bright!!!), but know that you’re in good company in the meantime.
You are the only person on this forum that I’ve heard mention visual snow. I also have it and there is a visual snow forum i check now and then - they occasionally talk about vertigo, their main problem is VS. There is a lot of research being done about the connection of VS to migraine. the VS is not my worst symptom, but it is one of the strangest.
Good luck in finding a good doc,
Dr Hamalygi is the expert to see in Sydney. He knows all about this stuff and diagnosed me and Adam. The hospital at Newtown is where he is located.
I’m yet to find relief though an dabout to start a new med.
I too experience the visual snow. It was really bad a couple years ago, when all of this hit me with a bang. Now its just an occasional thing, that I only notice when I’m outdoors. Sunglasses help a lot. I can’t say it is the most prevalent symptom - just very annoying. It used to really frighten me, but like many of my other symptoms, now that I know the cause of it, it makes it a bit easier to deal with.
Thankyou all for your replies, it brings me comfort knowing i am not alone, and not going crazy
Dizzy Blonde, i am very keen on knowing the neuro’s name…
I’ve seen Dr J Ell in Newtown near RPA and also another in st leonards whose name escapes me now.
The visual snow is more annoying than anything, it is the main cause of my poor night vision because it mucks up my depth perception and i can trip over things :roll: Its like an untuned tv, maybe i need a new ariel hahaha.
My mother also experiences visual snow (and migraines) maybe its genetic destiny…my poor daughter if she ends up with it
I am lucky that my migraines are painless (though i am subject to the headache type probably 5 times a year)
I saw my GP on wednesday and told him that “we” need to figure this out, but no epilepy or anti migraine drugs, because A) I hate them and B) i’m already in a migraine so whats the point and C) they didn’t work before.
I told him i want to go on VRT (usually only reserved for patients with labrynthitis or BPPV) so i can learn the various exercises they do,he said he will sort it out and apparently there is another clinic that occupational theripists run for epilepsy patients where they give them therapy with light flashing, fluro, dots etc which i am also going to put myself through. I figure that if i subject myself and persist long enough then my body/brain will learn to adjust and become my “normal”, kind of like how people learn to live balance disorders.
I think it’s worth a shot so i will let you know how i go and if it helps. I used to be a gymnast so healing through activity is very appealing.
He has given me a script for Zoloft, if i get anxious, panic attack etc…i will see how i go before deciding if i need to medicate my way through.
Take care all
Dear Leah, Wow I just read your post and showed my husband, it sounds as If I wrote it myself. What a buzz,
They haven’t tried me on epilepsy drugs yet, I’m a little frightened to go there, but if I have to I will, I’ve been reading up on all of this stuff silent migraine and for some of us it dose appear to mimic simple partial seizure.
my anxiety was huge before my diagnosis, as I felt that maybe one day at work or on the street It might get worse or turn into a grand mal convulsion.
Thank god it’s not epilepsy but it sure feels that way sometimes.
They say it’s a close cousin you know.
My real father (estranged) had epilepsy grand mal and petti mal, my mothers half brother also had epilepsy.
and I have a strong family history of migriane,
On my quest for a diagnosis, which took 2 years out of the 13 years I’ve been wobbling like on a rocking boat, I researched my symptoms and did match most of the criteria for simple partial seizure.
Over the past 3 years I’ve had very little remission from my rocking two months only.
And in the past year or more I’ve discovered my (persistent aura) it is very rare you know. I have some transient and some persistent,
During my hunt for answers I’ve been corresponding with a Dr klause podoll , who is doing a study and has a website, all about aura types,
I originally only asked him whether he’d ever heard of these symptoms of rocking which an ENT originally back in 1994 had told me was mal de debarquement syndrome (MDds) had ever corresponded with aura, persistent or otherwise , now I find he has joined me in his study and has put me on his web page, he say’s in the future he’ll be looking for other patients willing to tell their story as well. Under the heading of persistent aura.
Here is his sight, if you want it.
migraine-aura.org/content/e2 … &raw=home+
By the way he asked a lot of questions but never answered my questions, I suppose he doesn’t want to give out medical advise ect.
Anyway nice chatting to someone who knows how I feel.
I do get all of the things youve described, on a daily basis, which make me feel so very tired all the time.
hugs, Jen from Australia Brisbane