Constant dizziness for 2 years, visual disturbances, migraines, eye pain and head pressure
Posted , 17 users are following.
Hi guys I'm 24 and I have had this dizziness for 2 years now. I'm well past the stage of desperately trying to find a cure as I don't believe there is one but with the help of information from people that actually are suffering with this I would like to try and figure this out. This post is for the people who have these symptoms and are suffering and in need of answers. I need your help to piece together what might have caused this by finding similarities in our history.
My symptoms are constant dizziness (not vertigo!) my room is not spinning. This is the kind of dizziness inside of my head like the feeling you get when standing up too quickly with low BP. ( I don't have low BP just so you know) I get this with head pressure and visual disturbances like visual snow, high colour contrast and light sensitivity. On and off migraines and a lot of fatigue. Oh the joys!
Anyway I don't want to complain about this condition as I've spent a long time doing that already and I'm sure you'll all agree how debilitating it is. It's not easy living with it but the only way any of us will find the answers we need is from eachother. The doctors and specialists don't know why I'm dizzy as there seems to be no real cause of it but, of course, there is always a cause, and thats what I want to find out.
What I need from anyone who has this and is willing to comment, is the important information from the answers to these questions.This is just so I can see any similarities between us to possibly pinpoint what may have caused it.
What medications were you taking at the time it started, if any?
Did you stop taking anything you were on regularly? (like anti depressant/ anxiety meds)
Did you have any other health problems that started around the time?
Whats medications have you taken for your symptoms?
Which ones helped and which ones didn't?
Have you suffered panic attacks before the dizziness started?
What worsens your symptoms and what helps?
Did you have any head trauma or neck injuries in the last few years?
Did you take any recreational drugs around the time or for periods of time prior to that?
And finally... what do YOU think has caused your problem?
Please feel free to answer these questions for me if you are suffering the same symptoms as it will greatly be appreciated. Also if you have any questions for me then please ask away. Thank you
0 likes, 41 replies
jessica44030 rachel08024
Posted
Hi Rachel
I was perfectly well up until April. This Started with visual disturbances which then developed with all the symptoms you described. NO Vertigo just dizzy with head pressure. Then horrid brain zaps which made me sick. All scans clear. ENT said the ears clear. Eyes OK too.
I was pretty desperate so I have just been to London and have seen an oto-neurologist.He has diagnosed MIgraine Associated Vertigo. He has put me on Gaberpentin 100mgs 3 x daily and a restrictive diet.
No red wine, no cows cheese, no citrus fruit, no caffeine, no chocolate, no fresh bread (day olds OK) it's the yeast so no marmite, restrict dairy products and eggs.
Lots of rest, regular meals and excercises.
The drug is making me very spaced out but I have read that this will wear off as my body adapts.
If you are on Facebook i suggest joining "dizzy times" forum. They are very supportive
Good luck!
rachel08024 jessica44030
Posted
Hi Jess sorry to hear you're suffering with this dizziness as well its very frustrating when you just want your old self back. I have also been told my dizziness is associated with migraines although the migraines didn't start until about 6 months after the dizziness started so I'm a bit sceptical about that. I was also on gabapentin for 5 months earlier this year but I could only tolerate about 100mg a day as the tiredness was too much for me on higher doses and I was exhausted at work. I came off of it and haven't tried any medication since. Only vitamins and herbal supplements which really control my migraines.
If you can tolerate the spaced out side effects of gabapentin for a while and reach therapeutic dose then I'd be interested to see if it does ease your dizziness and visual disturbances because I didn't really give it a proper try due to the tiredness and didn't take the required amounts of it so I don't know whether it would have helped or not.
As for the brain zaps, I've had those quite a few times when coming off SSRI medications, it's a really strange feeling. I do think that this kind of dizziness is neurological and that anti epileptic drugs like gabapentin are probably the best bet for this so I really hope it helps you. Stay positive we will find the answers eventually!
arria jessica44030
Posted
Hi Jess, what are brain zaps, When I first had spinning VN I lay face down in hosp bed and there were noises in my brain like 'bzeep' bzeep' like fuses were blowing every few minutes. I have never heard of that with anyone else?? Thx
jessica44030 arria
Posted
Hi Arria
A brain Zap for me was like this. I can be sitting doing nothing or just going about when suddenly I get this whooshing feeling which invades my head and pins me to wherever I am. If walking I have to hang onto something. It squeezes my brain and I have to wait till it unclenches. It then drops through me like an electric shock, often I feel it as a buzz or tingle in my feet as it leaves. I am left with a huge nausea ( sometimes vomiting) and I am sweating profusely. The neurologist says it's MAV. He says by brain stem is irritated and my brain isn't unable to cope. Taking these drugs and cutting out the possible triggers by following the diet he swears will act like a plaster does on a wound. He assures me it WILL get bette. I have to go with that and persevere even though these drugs have me so spaced out. It's early days so it's wait and see. Good luck with your problem Arria
arria jessica44030
Posted
DizzyDarren rachel08024
Posted
Hi Rachel
I first had this about 7 years ago and you've described everything I've had. It's taken from then till now to get better. For me it was a long and slow healing process. I still get little set backs but I just ignore it now. Like last Wednesday I pulled my jumper off over my head and got a headspin. I thought it was going to hang around but it didn't.
The worse part for me was the anxiety that comes with this and for a while now I've been taking Fluoxetine and Propononel and these drugs have curbed that along with that foggy head we all get.
rachel08024 DizzyDarren
Posted
Hi Darren I'm glad to hear you've finally gotten better from this dizziness even if it has taken a long time. I've had it for 2 years but honestly can't remember what it's like to not be dizzy anymore. The neurologist has prescribed me propanolol but I'm scared to take it because it has dizziness as a side effect and I don't want to make matters worse. Just wondering if you found it made you more dizzy at first and also does it help? I have pressure in my head most days and feels like my head is full and cant concentrate its quite annoying. Also do you know what caused your dizziness in the first place?
DizzyDarren rachel08024
Posted
I'm not actually sure what caused it in the first place. I was told it was the after effects of a virus.
It was here on these forums that I read about Proponol and how they helped with silent migraines so I told my GP I wanted to try them. After a while my headache fullness/ foggy head went and they didn't make me feel anymore dizzy. I would say they actually reduced my dizziness.
Shelley07 rachel08024
Posted
Hi. I've just found your discussion on here. It's relieving to hear from someone with the exact symptoms as me!!! Can I ask if you've found anything to help since this post? I have tried everything possible over the past 3 and half years with no success xxx
rachel08024 Shelley07
Posted
Hi Shelley, the only things that control my dizziness is taking vitamin and herbal supplements that are migraine preventatives. I don't take any prescription meds anymore as I found they only caused me more problems. If you don't mind taking a bunch of tablets each day then I'd definitely give it a go and I can let you know which ones I take. Also I avoid any migraine triggers like wine, mature cheese, preservatives in food etc. which seems to help. Over sleeping is also a big trigger for me and makes me feel pretty unwell all day if i sleep more than about 8 hours. I rarely get the head pressure and migraines anymore compared to having it constantly before and this has made a big difference to the dizziness xx
Shelley07 rachel08024
Posted
rachel08024 Shelley07
Posted
Don't worry you'll find something that works. I also take riboflavin but only 100mg per day. I'll give you a list of what I take..
B6-100mg
Riboflavin-100mg
Non flush Niacin-100mg
Time release vitamin C- 500mg
Lemon bioflavonoids-500mg (each tablet contains Hesperidin and Rutin) I buy it from eBay as I can't find it in the shops
L-lysine- 1000mg
Feverfew-100mg
Kudzu root-500mg
Valerian root extract- 400mg
Every 3 days ontop of all that I take..
Beta carotene-15mg
Magnesium citrate- 100mg
Omega oils 3,6 and 9 as one capsule
Complete B complex
Sorry I know it's a lot! It seems like so much when I write it out but I'm so used to my routine now. Obviously everyone is different so please do some research on the things I've mentioned in the list before you try them just in case it isn't suitable for you. I hope this has been helpful for you if you have any more questions then feel free to ask. Just so you know it took about 2.5 months to notice the difference once starting this routine and I've done a lot of trial and error on different things and cut stuff out that wasn't working but all of these on the list I feel are useful and make a difference xxx
rocksolid rachel08024
Posted
leeh37 rachel08024
Posted
Hi Rachel,
I've been reading through yours and others comments regarding dizziness after looking up a forum today. I myself have been suffering with a constant dizziness conditions for around 8 months now and I've had enough of it!
It all started from what I can gather shortly after I got a mouth infection last May. I started to notice a strange 'fuzzy head's sort of feeling that made me unsteady on my feet. I obviously could not figure out what it was but if stayed with me and seen no end of doctors and had appointments at the hospital. I had a ECG done a MRI, blood tests everything... All come back ok. It was only in December that I was finally diagnosed with something - BVVP. Is it a possibility you could have this?
After being diagnosed with BVVP I was more relieved that someone had put my mind at rest a d finally told me what I have! I was then hopeful that it could be treated, especially after reading there were certain manoeuvres they can do to fix it.
After having 2 further appointments this month with the balance clinic they confirmed I 'haven't' got BVVP so I am back to being undiagnosed again! So it's not been sorted and all they have given me is some simple exercises daily that could take 'weeks and weeks' to sort, if at all. But have also been told if I don't sort my anxiety aswell then it won't go. They gave me phone numbers to get help with it but there is a waiting time of atleast 4 weeks! So this is not going to help me get better which naturally isn't good for my anxiety!
I really don't know how you and others have put up with similar conditions for YEARS because I'm struggling to cope with it anymore.
rachel08024 leeh37
Posted
Hiya, really sorry to hear you've been having such a bad time with the dizziness. I've had it for a couple of years so I totally understand the stress it is causing you. First things first, try not to stress about it, which is easier said than done but believe me the more anxious you let yourself get the more it will affect the dizziness. The less you fixate on it, the less it will feel like such a big problem and in turn will reduce your stress. Do everything that you would normally do and if you are having a particularly bad day just give your body and mind a rest as much as you can. I have accepted my dizziness and no longer see doctors or specialists and it does get better over time. The worst thing you can do is obsess over it which is what I initially did and caused me a huge amount of stress. Believe me you will find what works for you and be able to get on with your life as normal it just takes time
leeh37 rachel08024
Posted
Hey, thank you for your reply. I know what you mean about the stress making it worse, I have figured it does. I've started meditation and am taking a herbal remedy called St John's Wort in an attempt to calm me and bring the anxiety down but it's not easy. I've been out of work because of this so it seems I have alot of time to think which obviously isn't helping. I try and keep myself busy but it just brings it on so prefer to be sitting or lying down to get some restbite from it.
Fair play to you for 'accepting' that you have your condition, that's very brave. Good to hear things do get better, gives me abit of hope although I'm sure your condition on here are all very different and people have different ways of coping with it. I am desperate for things to improve or get better but I seem a long way off at the moment.
I've been given exercises to do to re-train the brain (don't know if that's something you were given?) Got to hope it helps