I am 24 years old. I have been suffering from this torturous undiagnosed condition/illness. This all started 6 years ago out of the blue. I experience weird symptoms that no doctor can understand.
Symptoms: 24/7 dizziness, feeling of being pulled to one side, problems with balance, swaying/rocking feeling when lying down, sitting, and or standing, objects seem to be shaky when I focus my eyesight, when looking at objects from a distance there’s this “expanding” visual effect, heavy feeling in my head, occasion random vertigo, migraines are once or twice a week.
I know it’s a lot! I’ve never talked to anyone about the full extent of what I’m going through. I had this one doctor who didn’t believe me and I feel like that’s the reason why I kept this suffering to myself all these years. I went to an ENT few years back but he wasn’t able to help me. I have learned to cope but it really gets emotionally draining not knowing what’s wrong with you.
I have good days and bad days but keep myself at home most times because I get anxiety about how my symptoms might get worst when I’m in public.
I really hope someone can understand what I’m going through.
Usually by working out the best protocol for them.
That starts with getting a diagnosis then following the associated set of options.
A lot of sufferers have no choice to go this route. I was so bad I had no alternative. The treatment I received was really helpful but not a silver bullet: none of it is.
I don’t think you could find one person on here who doesn’t fully understand. Just don’t expect the rest of the World, apart from a few clued up doctors and specialists, to have a clue and you won’t be disappointed. Sounds to me as if you are suffering from Migraine Associated Vertigo but you need to get that checked out a bit more though as @turnitaround I think said you may never get a confirmed definitive answer to that.
How to cope. I would suggest you go in immediate search of a Neuro-otologist who is best person to give you some sort of diagnosis (I never had any success with ENTs either) and hopefully suggest a treatment protocol. This involves diet restrictions, lifestyle changes and generally taking a medicine, a preventative (read the Wiki pages on this site for more detail in advance), which in theory should control the migraines/headaches and therefore reduce the other associated symptoms. Make sure that you fully inform the medical profession you see how it is affecting you in terms of anxiety/depression because that will influence the choice of medication and medics love nothing better than being able to treat two conditions with the one drug. For the present stay positive. With the above changes implemented things will improve. Whilst you are waiting for the appointment to come to fruition or for the treatment regime to kick in what you currently need to do is to start getting out again. Staying indoors is going to make the condition worse. You really need to go outside every day for a walk. That is medicine in itself. And stay calm. Helen
So sorry you are suffering. As others have said search out neuro otologists in you neck of the woods and tell your GP you want a referral . If you don’t want to wait you can see one privately, usually without a referral (you may be asked to write a one side A4 summary of symptoms and history) it has cost me between £195-325 to see specialists privately in the UK. Have a google and look in past threads on here that mention specialists. Or tell us where you are and someone might be able to suggest a clinic . As others have said we can’t diagnose and a MAV diagnosis is always a “waste paper basket” one, not definitive but given when other things have been ruled out. I found having balance tests etc. did reassure me that nothing “sinister” was going on with my brain.
I’m surprised that since you have Migraines twice a week that you have not been offered a preventative medication for the headache (the treatment for MAV is also migraine preventation meds) such as propanalol, pizotifen or amitriptyline. Most GP’s will treat actual headaches, even if they are stumped about all the other dizzy and balance associated symptoms. Do you take an abortive for your headaches such as sumitriptan? are you over using NSAID’s or the like to control the pain and getting rebound headaches?
I think you need to go back to your GP and lay it on really thickly about how much it is all impacting your life and push for a referral and ask to start a migraine prevention med. I sympathise with not being believed, I’ve had various GP’s tell me over the years that it was “all in my head” and I was also misdiagnosed with Menieres by ENT’s and the Neuro at a specialist “headache clinic” told me that dizziness with a migraine headache could only be episodic, part of the prodrome, not 24/7 and my symptoms were “something else”. However, there are good doctors out there, I was properly diagnosed and treated by a neuro otologist.
I’ve been taking pizotifen for almost 2 years now building up from a really low dose to 4.5mg per day and am so much better, not 100% but pretty functional . Whilst you wait for a referral I’d try a simple migraine diet such as the 6C’s that cut out most migraine triggers, if you don’t want to do a diet or know that food andsome alcohols don’t reallyseem to trigger you, I’d at least cut out caffeine. Keep a diary to see if you can identify any triggers e.g. thundery weather, strip lights, loud clattering in restaurant, hormones, playing on a PC or console for too long, stress etc. Also, be fairly strict with sleep - try to go to bed and get up at the same(ish) time everyday. Be kind to yourself, take things easy and try not to stress about stuff, don’t feel guilty about resting if you need to or swerving invites when you feel bad.
You can improve, get a referral and start on a treatment plan. Have a google and pick a doctor who talks about MAV or vestibular neuritis in their blurb. You may need to be pushy with your GP and if you get knocked back, see another one from the practice as they may be more amenable. Read some of the Success Stories on here.
Hello there! I want to describe it as looking at a blank television screen and seeing its corners stretching out. I know it’s really weird but it’s honestly hard to describe this visual disturbance
I appreciate your post! Believe it or not my last doctor told me to just sort of “deal with it”. He explained that if taking ibuprofen relieved the headache than I should be good…seriously! I also asked him about the lightheadedness and gave me a short lecture on how women experience these symptoms more than men and ended the discussion.
Anyways… I am going to start hunting down another doctor that can help me. I can’t thank you enough for the suggestions. It’s nice knowing you aren’t fighting this daily battle alone
It does sound a lot like MAV. Migraines do weird things to the brain! I had all kinds of crazy symptoms. Treat for migraine; eventually it will work and you’ll feel better.
Best thing you can do for yourself is this! Be your own best advocate and keep searching for a Dr who wants to support you through this challenge. When you find that Dr, that partnership can change your life Keep searching, keep learning and keep hope!
Look into an otoneurologist. Or a neurotologist. (They are tricky to find, VEDA might be able to help you.) You sound like you might have a perilymph fistula, which is a controversial diagnosis, but my husband “listed” to one side when he had his after scuba diving.
Blessings as you figure this out and find a doc who can really help you!
If in UK we have a link to the Meniere’s Society’s list on this page: Types of Specialists
(FYI as an aside I was also alternatively diagnosed with a PLF. However I’m recovering from MAV/PLF/whatever it is spontaneously. More about that in my featured topic on my user card)
Keep searching, keep learning and keep hope!