Constant dizziness for 2 years, visual disturbances, migraines, eye pain and head pressure

Ears, nose and throat
1

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

2

Sounds like vestibular migraines to me. Iv heard success stories with amitripyline

3

OK, I have been like this for 6 yrs, same issues. I am guessing you went down the usual road of dr's so I am going to hit you with the odd things it could be. Look up all these different terms to lean more bout them. Verticle Heterphoria whihc is an eye issue. Look up SCM muscle issues and trigger points, the SCM is in your neck. I also saw a forum where people still had their widom teeth and had them pulled and it fixed their problem. It does sound like a vestibular migraine which is what they think i have and no I have not found the solution yet either. Go to facebook and loook up vestibular migraine and join some groups there, nice people and they may be able to help.

4

Sounds like one of my many dr visits. Your questions are interesting, and some I just recently thought about myself.

I did stop antidepressants around the time the condition worsened. Which by the way, I agree with another responder to read about vestibular migraines. I totally understand the sense is dizziness, but in my head, then brain fog and can't think straight.

Back to questions. I was already taking triptans and fiorinal for migraines, & Klonipin for anxiety. But have upped both.

It is made worse in stores where I have to look up and down and back and forth.

I started taking 2 meclizine in the morning and waiting an hour before getting up, this does help with the vertigo symtomps. Sometimes.

I did start going to an new MD/integrative who encouraged me to eat a high good fat diet, greens, and good protein. Good meat and fish. Lost a lot of weight, BP, came down as did cholesterol. Off all those medicines. I started a lot of supplements, I've been curious about those.

I've just started vestibular therapy with a reliable physical therapist who is treating it all as upper clerical issues. Going to see how that goes

Hope that helps

5

1. None

2. No

3. Klonopin. Paxil.

4. Paxil helped with anxiety

5. Panic attacks only AFTER

6. TVs, computers, dark, stores, doing too much in general

7. No

8. No. Mine started with drinking 3 energy drinks, tho.

9. I've spent over a decade trying to find that out.

6

*that is cervical issues. He even admitted it may or may not help. He does part hands on therapy and part exercise. It's hard to find good anything, Dr's, physical therapists, dentists( some relate all to TMJ) But I trust this physical therapist, I'll respond to thread if it helps.

7

I have been dizzy for two and a half years. But mine is a feeling of motion when I'm still. I feel better when driving. Because I feel normal when driving I have been diagnosed with mal de debarquement. A motion disorder. Anyways I take 20mg of amitriptyline and 37.5 of Effexor. It helps some. I use klonooin at night before bed which helps me feel better the next day. Valium for travel. No cure. Nothing really helps. Maybe exercise to a degree. Stress makes it worse.

8

Hey thanks for your comment I just looked up Verticle Heterphoria and its very interesting because I have felt like there was something wrong with my eyes for years now as they dont feel as though they are aligned properly so could actually be what it is. I will look into it further and maybe get an appointment with someone who specialises in this.

9

Hi Betsy thanks for your comment, I stopped taking sertraline abruptly around the time this started and I've read articles about the long term affects that SSRI's can have for some people after they have come off them. One of the main symptoms is dizziness so could possibly be a trigger to all of this.

I honestly believe that taking medication only brings on more unwanted side effects and causes havok in the body which is why I no longer take any medication. I'm not sure which supplements you are taking but if you are struggling with migraines still I have found that riboflavin (B5), butterbur and feverfew (herbal supplements) and also co enzyme q 10 have really helped control my migraines. I had 3 months straight with a continuous migraine it was hell but taking those supplements daily gave me so much relief and it eased off so much within a couple of days. I think natural remedies can be just as effective as prescription medication and so much safer to use.

I have noticed that the worse the migraine is, the worse the dizziness is so obviously getting the migraines under control is a priority and I completely agree when going into busy supermarkets and shops it makes my dizziness a lot worse. I really hope the vestibular therapy works and you find some relief

10

Hi Hayhue thanks for answering my questions just wondering if you suffer migraines as well or just the dizziness? I can't drink energy drinks anymore as it makes my headaches worse and also gave me a massive panic attack randomly so has put me off them completely.

Did you suffer with anxiety before all this started or only after? I had a big problem with anxiety before this and was getting panic attacks a lot and then the dizziness started slowly at first and a bit on and off and then it was continuous. Also the reason I asked about recreational drugs is because I took a hallucinagenic at a party that I'd never taken before around the time and have wondered if that triggered this all off. I'm sorry to hear that you've had it for so long its very frustrating to say the least.

11

Try covering one eye and see if you feel any better.

12

I have same as your dizziness I think but I call it imbalance. Have difficulties walking and activity. Constant fatigue - no use 1/2 of day, I nap, lie down. I do not have visual disturbances. Occasional headaches.

Questions 1-6 no, none.

7. Brain scramble - difficulties during day with light, noise, motion. Much better at 1a.m. when sensory deprivation, no noise nor light nor motion. Shopping, restaurants, groups not good.

8. Had major neck surgery for stenosis one year after VN attack, no change but prevented VN therapy.

9. No

10. Virus or poison. My condo was treated carefully with flea fog 2 weeks before the violent attack of spinning vomiting for a week, hospital. Minutes before attack I breathed a small amount of bleach chlorine fumes. I had dangerous ear infection when I was age one, before antibiotics, but this is 70 years later. I think my left labyrinth is atrophied, dried up. Guessing at cause of problem.

13

I joined VEDA (Vestibular Disorders Association you can find website) they have the most recent research. 'Patient' is ok but heavy on anxiety symptoms, supportive but not as practical as VEDA.

14

Hi Rachel,

Hope you feel better today. 

May i know when you say "constant dizziness", do you feel imbalance with a pressure in your head? And is this a daily thing?

15

Hi Max, yeah thats right. It's a continuous imbalance and head pressure all day every day. It makes me very clumsy and unsteady and puts a lot of strain on my vision. I wish it were more on and off so that I would at least get some relief but unfortunately it is always there.

16

Hi arria thanks for getting back to me. I know exactly what you mean about the constant fatigue. I have to sleep so much more than I used to and I'm still exhausted by about 6pm. I think maybe your dizziness is to do with the viral infection you had in your ears and possibly just coincidence that it happened after the flea fog. I've never had an ear infection but for the past 3 years I've been unable to sleep on my right side due to intense sharp pain deep in my ear. I've been told that this is due to a build up of pressure from where I grind my teeth at night and have wondered if this could be the cause of my problems. I have never had that intense spinning vertigo though, just dizziness and imbalance.

17

Have you seen your doctor/neurologist and what did he/she say?

Im experiencing what you have now so i totally get where youo're coming from.

Im currently on Amitriptylene 5mg daily for my headaches and it has helped somewhat but am still getting the dizziness every day especially when i wake up. 

18

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!

19

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!

20

I have seen loads of doctors and specialists, had MRI, blood work and all the usual tests and they can't find anything. The neurologist thinks it is migraine related but can't seem to explain why it is constant and not on and off which would be more typical of migraine associated vertigo. I also can go months without migraines and yet still have the dizziness every day so in my opinion it is not migraines casuing it.

Although I don't need glasses I have problems with my eyes which has been going on for years. Trouble focusing when things are close up, my eyes seem to overlap and get very strained and painful as well as random blurry vision. Ive been and had my eyes tested 3 times this year and they say my eyes are fine but I know something is wrong so when I have the money I am going to see a specialist and get it checked out properly because it could well be my eyes that are causing all of my symptoms. And I know what you mean about waking up, the dizziness is always really bad for me in the morning and I feel like my brain has to adjust for a few hours before it settles a bit.