Migraine Headaches Support Group
Migraine is a neurological disease, of which the most common symptom is an intense and disabling episodic headache. Migraine headaches are usually characterized by severe pain on one or both sides of the head and are often accompanied by photophobia (hypersensitivity to light), phonophobia (hypersensitivity to sound) and nausea.
I've been dizzy 24/7 for 2 years and 5 months. The culprit appears to be migraines. I'm diagnosed with vestibular migraines and boy has it taken over my life. Not the pain, tho I get frequent headaches, but it's the dizziness. Let me explain. The sensations include feeling as if you're swaying, or on a boat, light sensitivity, sounds are magnified, tinnitus, blurry vision, quick spins, weather triggers, head pressure, ear pressure, looking upwards and looking downward in hard, showering is hard. There's so much more. This condition has stopped me dead in my tracks. I no longer drive or go anywhere alone. Any sensory overload can cause confusion and loss of words. I've tried lots of meds and suppliments. I feel im Not moving forward due to my med/suppliments sensitivities. I seem to only be able to tolerate a pediatric dose. Anyways, if you suffer from vestibular migraines too, I understand.
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I don't know if it would help at all or if you've tried it already, but have you tried Migrelief? It's a vitamin supplement that is just Riboflavin, Magnesium and Feverfew. You take 1 pill twice a day and you should see it working after about 2-3 months (i know, long wait). I used to get regular headaches almost every single day of my life, no medication would get rid of them. Then I hit puberty and started getting migraines on top of the every day headaches. The migrelief got rid of my every day headaches COMPLETELY - it cuts down on the severity and frequency of my migraines as well. I always say that I can't live without it.
Like I said, not sure if it's the ticket for you, but I figured it was worth mentioning :)
https://www.amazon.com/Migrelief-Original-Formula-Therapy-Puracol/dp/B000UY2BUI/ref=sr_1_4_a_it?ie=UTF8&qid=1519934585&sr=8-4&keywords=migrelief&th=1
One thing I do to help reduce this feeling is that I drink 1/2 of my body weight in fluid ounces of water. When I don't keep hydrated, the tinnitus and the dizziness comes roaring back. My ENT tought me this trick. It is essentially tricking the kidneys to release fluids from your body, more specifically the inner ear. Have you been checked for Menieres? The gold standard is the ECOG test that will test for Endolypmathic Hydrops (fluid in the inner ear) more commonly known at Menieres.
But despite the Menieres and Migraine associated vertigo which is supposed to be episodic the only thing I can explain is the nystagmous where there is a subtle movement of the eye that only a doctor can detect. Ask about that the next time you see your specialist. Now, don't let them wiggle the light quickly in your eye, they have to make you do slow eye movements and hold the light on your eye for a period of time to catch the movement. I bet this is what is causing the daily dizziness for you. There is no cure, but I can reduce the severity by staying hydrated. Good luck !!! I'm sorry you are experiencing this. It ruined my career, my social life, my future plans. Now, I spend most days riding my rocker recliner. It's not a great life. I have some days that are better than others. Keep posting, would like to hear your progress !!
I have also been diagnosed with vestibular migraine. My symptoms sound very much like yours. I was diagnosed about 18 years ago and it has not improved much since then. No medications helped and actually most made the dizziness and vertigo worse, I now get Botox which helps dramatically with the headaches but not much for the vestibular disturbances.
The things that helped the most are: A strict diet, plenty of water and exercise when you can tolerate it. Even if it is only for a few minutes. The diet is the most effective remedy I have found. I did a strict elimination diet and took the better part of a year working foods back into my diet. I found several things that affected my headaches and rheumatoid arthritis. Though it is not a cure, it has enabled me to keep working all of these years. Which I am so grateful for. Everyday I can function well is a blessing.
I am very lucky to have a love for life and a strong work ethic. That has helped me keep going all of these years. I do struggle with memory problems and brain fog but I do well enough to hold a good job. You can still have an enjoyable life. You just have to have realistic expectations of your abilities.
My best to you in your journey. Be well.
I am just writing to let you that you are not alone. At its worst, it is so hard to adjust to the world of vestibular migraines. As others have said, hydration, adequate rest and diet can at the least mitigate the symptoms.
Take good care of yourself.
Ataxia is a movement disorder and now they have testing/specific targeted medication and targeted physical therapy called: "Neurorehabilitation Neural Repair".
I have lived with this since 2004 and believe me, it's no picnic. Waiting to hear back from my neurologist what he can do for me.
If we live long enough, modern medicine may be able to help us with this debilitating disorder. Good luck and keep us posted.