Just learning to live with this????

Hello,
Started having symptoms shortly after my third Covid vaccine 11/21. Vertigo was intermittent, ear ringing, severe (what I thought were sinus headaches). Symptoms came and went over the next year. Then, the last few months the headaches worsened, ringing became constant and vertigo as well. I have been tested at Johns Hopkins and the neurologist diagnosed Chronic Vestibular Migraines and PPD.
I feel like my life has been stolen from me in a matter of a few months. A new symptom arrives weekly. Neck pain this week, eye jumping, can’t focus visually and my cognition is suffering as well.
I initially tried P.T. for a month, no help. Have tried magnesium, B2, Migravent, Migraleif. Have also stopped all chocolate, alcohol and following a “migraine diet”.
I feel like I am losing my mind, I am an active, healthy 67 yr old and I am finding this so very hard to accept. Any suggestions, thoughts or opinions would be greatly appreciated.

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Welcome Robin!

Yep, been there bought the T-shirt.

You have to have a lot of patience. You will get your life back but it is incredibly slow.

I hope the site is useful to you.

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Thanks for the positive encouragement. I guess no returns on this shirt lol.
It is encouraging to know that it can improve. Patience must be the lesson here, not one of my best qualities. But must be the hard lesson with this challenging illness.

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I wanted to fix it within weeks … turned out it took me 3 and a half years and I’m still not quite back to my old self but functioning mostly perfectly normally these days. I’m pretty typical, you will notice members of the board tend to go quiet when things improve, understandably :slight_smile:

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Robin - I’ve been dealing with this for a long time, both up and down. I try to focus my thoughts on what I CAN do rather than what I CAN’T do and ignore as much of the bad stuff as I possibly can. I’m not always successful but I try really hard not to let myself fall into a deep downward spiral. It’s all about hope.

Several years ago when I was very ill my primary care doc got right in my face and said “whatever happens don’t allow yourself to become isolated because that’s the worst thing that can happen to you.” I think he was right. Keep pushing for answers – I wish I had been more assertive much earlier in my journey. Best wishes.

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Thanks for the great advice ! I am very blessed to have a large family that, now that I have explained my diagnosis, will not let me disappear.
I did find myself isolating for several weeks. But now pushing through, finding positive moments even if it’s just getting out for an hour a day.
Just knowing that you aren’t losing your mind is 1/2 the battle it seems.

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I have struggled with vestibular migraine for 13 years and am still trying to recover. (I’m 35 and vm has dominated my youth,preventing me from truly living) I don’t believe anyone should just learn to live with it. There is treatment out there that will work for you,i strongly believe that, but it may take a while to try different things before you find what works for you. Once you fibd what works it will inevitably take months to gradually feel better. But hang in there, be patient and don’t lose hope even though it’s very, very hard. Good luck.

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It’s worth trying preventatives. So talk to your doctor. There are many different types out there and it can take a while trying them. I saw a private specialist who said that there are some really good ones designed for migraines (cgrp injections and gepants) however they’re really expensive since they’re new. You can get them if you’ve tried 3 other preventives each for 3 months. So it’s worth trying the other preventives even if they don’t work. Unfortunately they tend to have side effects. In terms of vestibular therapy you need to be careful with it if you’re getting freq migraines since some of the exercises could trigger migraines. I’ve found that trying to get out and do things (gentle walks, meeting friends) helps in the long term with helping your brain adapt to dizziness.

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Thanks! I have started Migravent and Migraleif. Both are natural supplements. They have reduced the symptoms by about 50%. Getting more testing today, Cervical spine X-ray, vascular testing of my neck and lots of bloodwork recommended by my neurologist.
Getting the same response from my primary and P.t. specialist. Both have seen a dramatic increase in people with these symptoms since Covid.

That’s very interesting. There is much scientific discussion about the inner ear being “immune active” - infection is thought to cause inner ear pressure to rise in a pro-active attempt to flush pathogens out. I’ve often wondered if this can get to a level where it upsets your hearing and balance …

I would like to chime in, I developed VM about 6 years ago, It is frustrating. I agree the PT could be a trigger, if you get too aggressive with the exercises. I had to learn to slow it down and rest between each exercise to let my brain settle. Let’s face it, nobody likes PT so you want to rush through it to check the box.
As for meds, I was.a mess until the anti-cgrp meds (Aimovig & Emgality) came out. The new gpents (Nurtec) have helped as preventive but also I use it along with a triptan (Maxalt), amazingly i don’t get the brain fog hangover. My sign of a migraine coming is subtle, it is an ever so slight loss of balance, like losing your footing and you stumble getting up. Most times I ignore it and pay the price 1-2 hours later, The other thing that worked for me is Botox. I can tell when it wears off at the 10 week mark and there are 2-3 more weeks to go.
The worst part is the insurance. Medicare’s rule that you can’t use the coupons is ridiculous. It creates a cost barrier for access to the latest meds that could help a lot of people. I’m not looking forward to Medicare, my out of pocket medical costs will skyrocket unless I stay working to keep private insurance.

Ask your neurologist if you can get on a 10 week rotation. The usual dose is 155 units at 12 weeks. I do 200 units at 10 weeks. Game changer.

Was it time that helped you heal or other things? I’m in the same boat as Robin - though I’m dizzy constantly and not symptoms of vertigo. Thanks for the insight.

For me it was a combo of time, meds & Vestibular PT. For the dizzies, the PT made the biggest improvement. The PT needs tune ups every so often to keep your brain adjusted. I’m overdue, it’s time pull out the sheets and metronome (have to move head a certain speed that you work up to).

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A post was merged into an existing topic: Miss Migraine’s Diary

Hi, are you still taking Emgality? what type of side effects did you experienced?

Hi. I’m still on the same combo including Emgality. The only side effect I notice is occasional constipation. When it happens I hear my grandmother in my head, you need to eat more roughage.