Can I just ask how many people suffer only dizziness without any additional symptoms?? I know the dizziness is horrendous enough on its own.
When this all dizziness started I was ill for 2 weeks with an intense pressure headcahe and thought I had sinusitis. When the dizziness hit it was in conjunction with the horrific pressure headache. I also have pins and needles in my hands, feet, back and head, crippling fatigue at times, flickery shimmery vision, stinging eyes, twtiching in the muscles of my hands and legs, occasional tremoring in my fingers and see hundreds of floaters and strong after images. I am really keen to get a consensus on who else has this sort of diffuse neurological disruption alongside the dizziness??
Before the dizziness hit I had years of neuro type problems, which all began at the age of 18 with a pulling muscle tension in one side of my face that lasted 6 months, swiftly followed by intermittant (1-9 month periods) of visual disturbances where I would sort of see TV static over everything and extreme paraesthesia.I went to the National Migraine Centre in London who were amazing (a charity, you pay a one off donation and can become a patient). The doctor there said she felt some of my early symptoms didn’t sound like migraine. It’d be great if whoever can could post if u identify with any of this?? THANK U! x
Lizzie, my main symptom is dizziness and imbalance however I also suffer and have suffered the following at some points during the last 3.5 yrs: fatigue sometimes very severe, odd bits of tingling in arm or leg, chronic neck pain, visual migraine once per year approximately, twitching in eyelid muscle, bloodshot eyes, crunching sounds in ear when moving jaw, occasional ringing in ears, hyperacusis (muscle twitch inside ear in response to certain sounds), stiff feeling in right eye, urinary frequency, sore skin on leg, muscle trembling, yawning lots to get extra air into my lungs, anxiety, panic attacks, heart palpitations. I am sure there are other things too.
I disagree with the migraine doctor in that, from what I have read about migraine, all the symptoms you describe sound as though they could be due to migraine. Migraine covers such a wide array of neurological responses including people who have complete paralysis down one side of their body and are convinced they are having a stroke but it passes after a few hours or so and therefore is actually migraine. One way to be sure would be to have a brain MRI scan to rule out anything sinister. If nothing shows up then it is even more likely to be migraine x
Wow I can defo identify with a few of those symptoms especially the muscle trembling and lots of yawning. Did they all start when you got dizzy or did you have any beforehand?? I had an MRI when it first started and have had a few over the years, they’ve always been clear. I do have PCOS though which I know has been linked to migraine. It is so frustrating how dramatic migraine can be!! One of my Mum’s friends had the paralysis due to hemiplegic migraine. How are u getting on with the nori Jem? I’m upping from 35 to 40mg tonight. xxx
Lizzie glad you can identify some of the same symptoms. At least then we all know that this thing can do all kinds of crazy things to us!
Yes they nearly all started after I got dizzy, some of them didn’t appear until many months in to it and some come and go. I mean I did have visual migraine once a year on average for the last 10 years and occasionally eyelid twitches but all the other stuff just started after I got dizzy. It certainly is wide ranging and very frustrating. I just upped the nori from 35-40mg last night. Today hasn’t been too bad so crossing my fingers that it is having some good effect. Still got a long way to go to feel normal again though. Do you have a target dose? We just have to hang in there I guess xx
No not really but Dr. S said I could go as high as 75mg until things stabilise. He mentioned the acute attacks and said my first goal was to diminish them, then focus on the background dizziness. xx
before I got hit with 24/7 I had a v bad sinus infection. So the sinus infection went away but the dizziness remained. I too had pins and needles on my feet and extremely fatigued all the time. I used to have tremor on my fingers too. the tremor and pins/needles went away completely and the dizziness and fatigue although still around has improved dramatically.
Along with the dizziness came the flickery shimmering vision, strong after images, tired eyes, plenty of floaters, squiggly dots in the sky, tv static throughout my whole visual field. These visual disturbances have not improved at all. So yes I can 100% relate to all your symptoms.
just wondering, you mentioned in your post that u saw tv like static intermittently for a period of 9 months. Has this tv static symptom of yours gone away completely since then or do u still suffer from it? If it went away, did u do anything like take a medicine to get rid of it?
I am in the same boat as nabeel. Lots of visual problems that I would describe as neurological. Just type “visual snow” or “floaters” in the search engine and you will find lots of posts from me and others with similar symptoms. After living with these issues for 2 years now, I would say they are definitely migraine related. I think I am getting some relief from Topamax at the moment, but it is too early to tell. They are still there, but I have noticed they are not bothering me as much this past week.
My visual symptoms are floaters, Blue Field Entoptic Phenomenon (squigglies in the sky or bright surfaces), after images, photophobia and ghosting. I think the photophobia and BFEP has calmed down a little bit the last few days.
Before I developed these visual symptoms, I lived with strictly vestibular/balance/dizzy problems for a year. It was believed that Vestibular Neuritis was the cause for all the Vestibular issues. It could have possibly kick started a migraine variant that left me with all this lovely shit…
Yes before it all hit I had neurological symptoms for years! I remember at college the back og my whole head would go numb I never told anyone though it happened all the time. Then I used to get like cold water feelings on my scalp and face like someone was running cold water on me. I was walking once when the sunlight bounced off a car and I looked at it I got the worst migraine aura I have ever had couldnt see for a good few hours it was so frightening as I had just started a new job and was walking back from my lunch break I went back to work like I was normal but I had strobe lights in my eyes and just couldnt see it had never happened before. I also had hyperacusis to certain noises especially lorries revving for some reason would make my ears vibrate and everytime I drank alcohol I would be so dizzy the next day too but it would only last a few hours then it would go (oh how I wish that could happen now)
When I had my first son after the birth I had a headache every single day until he was four months old and also got a twitch under my eye which lasted months and ended around the time the headaches stopped. I used to get panic attacks a lot too I think now I had a minor inbalance but didnt realise and thats why I suffered anxiety all the time. After my first son I went on prozc due to the panic attacks and headaches they thought I had PND but prozac did work and I got really well.
For a long time Ive had neurological problems I guess I was a ticking time bomb for this to happen to me really x
Wow all of us do seem to suffer a wide variety of neuro problems. Blondie it sounds like you’ve really been through the mill, I can relate!! Nabeel, yes I have had the ‘visual snow’ for over 10 years on and off and it always comes with extreme fatigue and pins and needles and pressure headaches. 3/4 neurologists and an opthalmologist have told me it is complex migraine. The longest I have had it is 9 months and the shortest time was 2 weeks. It always dies completely down to a level where I don’t notice it and it doesn’t effect me at all but is very slightly visible. I have never taken any drugs for v ery long. When it all started when I was 18 (31 now) I tried amitriptyline but it made me feel like a zombie so I stopped. It always just went away on its own. I’ve always coped with all the visual and other symptoms but the dizziness I just cannot handle, it’s so limiting to my life. Walkerphoenix, are you still dizzy or is it more the visual symptoms you suffer with now? I can relate so closely to all your visual symptoms. xx
So what you are basically saying is that visual snow hit you when you were 18 and you have been suffering from this condition 24/7? It never completely goes away but is so mild that you don’t notice it am I right? When it comes back, it comes back in full swing and remains until out of no where for no particular reason it just dies down again to the minimal unnoticeable level right? You are lucky that it at least dies down to a mild level for certain periods unlike me where its there full on all the time though I only started suffering from it from the beginning of this year.
What about the flickery shimmery vision, stinging eyes, floaters and strong after images? Do these symptoms also die down and go mild during your good periods or do these symptoms remain but without the tv static (visual snow)
Yes that’s pretty much how it is. I have always had it ever since it hit but when’s it’s bad it drives me crazy, I literally cannot bear to be anywhere!!! But it does just die down so much that I don’t even think about it. It’s weird. Even when it is almost not noticeable during the day I can wake at night and see it very severely, it’s always been much worse in very low level lighting, i.e. when I turn off the light at night to go to sleep I see it alot but I’ve got used to that over the years. is yours similar?? All the visual symptoms die down during good periods and so do the fatigue and pins and needles and headaches etc, they all come together and settle down together. I hate the visual symptoms but I find the dizziness 100 times harder, it’s so limiting to life and so unpredictable (in may case). The dizziness only hit me in July this year after a period of stress and drinking alot of coffee so I guess I tipped myself into a vestibular migraine whereas before I was only suffering occular symptoms. Do u suffer with dizziness as well??
Yes its much worst for me low lighting conditions and its very very very when I first wake up from sleeping either in the middle of the night or in the morning. Once I am up in the morning, the worst bit settles down to the baseline visual snow with all the related symptoms we have discussed. I suffer from dizziness 24/7 as well but its come to a point where I am able to manage it due to the Cymbalta. My worst symptom of the lot was in fact the heavy head, dizziness, head and neck pressure. The visuals are very disturbing and I absolutely hate it cz its extremely irritating and brings on anxiety. I have to then calm myself down by telling myself that its only MAV and nothing serious and I can live with this bla bla.
Once you find a med that works, your dizziness should also subside. I also have a migraine diagnosis for my condition.
I suffer from pretty much everything you mentioned. The left side of my face is always numb and almost feels like my lips and eyes are drooping (which they aren’t … .thank goodness). One of my many Doctors I have visited said that it was jaw tension and asked whether I grind my teeth at night. I have had quite a bit of acupuncture on my face which was another failed venture. Visual disturbances and constant debilitating headaches are a real problem for me too.
It really is amazing what migraine can do! I have always felt that there must be something else going on with me but reading all this I realise we are all so similar! X
For the first year it was strictly dizzy and balance problems. For the last year it has been mostly visual symptoms and the balance stuff has lessened. In the last 2 weeks, with the help from Topamax, I have noticed the remaining dizzy and balance stuff has improved. The eye stability and gaze has gotten much better. My heavy head feeling is better. The brain fog has improved. As far as the visuals, they are still there, but they seem less intense (maybe just me anxiety over them has improved). Perhaps just the photophobia element is better, but overall the “anxiety” over my visuals has improved. I am hoping that with more time I will continue to get better on Topa, if not, perhaps go up to 125mgs and see if I can knock out any more remaining symptoms.
Yes, LOTS. But I don’t think they’re all due to migraine in my case.
Electric shocks, patches of semi-numbness or total numbness, spots of buzzing and tingling, invisible insects stinging and crawling, etc. You name it. These have occurred in my face/head but also in my hands and legs/feet, over the past 13 years, but not nearly as much now as in earlier years.
I’ve got lots of additional symptoms on top of the 24/7 dizzies, but the main one that hit a month ago, 5 months into my dizzies is a constant never ending headache. I was on Pizotifen up to 3 mg when the headache hit from no where. I thought I had got everything under control had improved to around 70% and optimistic about life and recovery again. I thought maybe I had overdone it with with aggressive approach to VRT so stopped, had another CAT scan, eliminated wheat from my diet, acupuncture, chiro visits, nothing was making it go away, so I thought maybe the Pizotifen is causing it, so I slowly decreased and stopped that. But nope, still had, have, the headache. My GP has me on 10mg Amiltriptiline, but I’m getting horrible anxiety side effects along with sleeplessness. After whinging online, I learnt from another support forum that a new symptom from no where is called a breakthrough symptom, instead of stopping Pizotifen I should have increased it. The dizzies are back to 60%.
I’m so worried and scared that I have ruined my chances of ever getting better.
Have you read Dr Buchholz’s book ‘Heal your Headache’ - available online from Amazon. Ex book which many on the forum have read. Yes, agree with the fact that the ‘breakthrough’ pain is more than likely to be an ongoing migraine symptom.
In a nutshell, Buchholz (and many other MAV specialists) say "no abortives, no painkillers, stick to the migraine diet and find a med that will fix your hyperactive brain! You certainly won’t have ruined your chances by coming off the Piz. If you were going OK on that it could be worth giving it another try as many people on the forum have done well on Pizotifen.
MAV specialists recommend not doing any VRT until you have control of the migraine. Hope this helps.
hi sorry - posted this twice!
Thanks so much Barb for your thoughts. Yes I have read that book, I’ve been following the diet strictly since month 2. Stopping pain killers is going to be hard, but i will try anything, absolutely anything to get back to where I was before this headache started. I think if my side effects of anxiety settle down soon I will try the ami for a bit, but if my dizziness continues to come back I will stop and go back to the Pizotifen. I’ve read here and on other sites that once a med works the first time and the person goes back on it a second time it doesn’t work for them. I’m petrified of that happening to me.
Thanks so much for your support and kind words they really mean a lot.