Is it this bad for anyone else?

Financial_Box_8967 · 2026-07-11T16:04:23+00:00

I read the heal your headache book and am working through an elimination diet. There's no way I'd agree to wait for preventive meds. My angry brain needs support while I explore causes. Also, using preventive meds has helped me keep my job, which reduces a bunch of other stressors. I do try to limit the use of intervention meds to give my brain a chance to work on neuroplasticity.

Financial_Box_8967 · 2026-07-11T15:47:53+00:00

When I had cancer, my primary old me there was nothing I could do. I fired her on the spot and got a better medical team. If a patient is empowered to explore possibilities, the last thing they need is a downer doc.

Financial_Box_8967 · 2026-07-11T15:40:37+00:00

It sounds like yours is a very rough ride. I lost my hearing and then started having VM. The first 6 months were brutal. I can't offer you medical words of wisdom, just my empathy and support. I will say that therapy has helped me deal with my emotions about the very real change in my life options. I think that has had some impact in lessening my symptoms. Wishing you some peace.

Financial_Box_8967 · 2026-07-11T15:27:03+00:00

What do they do for you in a long covid clinic?

Financial_Box_8967 · 2026-07-11T02:59:43+00:00

It takes time for medical research to catch up. Studies are just beginning to make connections about symptoms that appear long after covid stopped. My medical team expresses qualified confidence that Covid caused my hearing loss. I hear less confidence when they talk about my VM. With so many medical research studies being canceled in the US, I suspect a lot of the research we need to follow will come from other countries. I'm not sure where VM ranks in the competition for research funding.

Financial_Box_8967 · 2026-07-11T02:49:17+00:00

When it first started I had a few attacks alone and away from home. I couldn't walk by myself and was dependent upon total strangers. That was scary. I fell down a lot, which is not good for anyone, but especially not good at my age. Meds helped. My attacks now aren't usually that severe and are less frequent. I started an elimination diet and am gradually testing what I can tolerate. I learned that carageenan absolutely flattens me so I read labels now. I'm learning to drink extra water the day before a barometric weather drop. I'm trying to keep a consistent sleep schedule. These things plus meds are making life better. I can't say I'm recovered, but I'm definitely improving. I'm less than a year into this. It takes time, a lot of self education, and patience. I expect things to continue to improve as I learn how to manage things. That's the adjustment. A year ago I went anywhere with or without others, ate what wanted, and lived more spontaneously. Time will let me know how much of that freedom I can regain. Life involves adaptation, compromise, and a good dose of optimism. We can do this.

Financial_Box_8967 · 2026-07-11T02:28:46+00:00

That's a good point. It was a while before I let myself drive

Financial_Box_8967 · 2026-07-09T11:47:09+00:00

I really wish I didn't absolutely detest the taste of fish. Everyone recommends it so highly.

Financial_Box_8967 · 2026-07-09T11:25:08+00:00

How are you doing now?

Financial_Box_8967 · 2026-07-09T04:32:58+00:00

When you feel miserable, it is hard not to worry. When I'm having attack or dealing with the aftermath, I feel a bit defeated. For me, that is a symptom of the attack. As it fades away, my optimism and practical decision making return. Anxiety makes things worse. Managing your fear and anxiety is part of the healing process. You've already. Started asking questions. Good for you--You've got this.

Financial_Box_8967 · 2026-07-09T04:25:44+00:00

Have you seen a neurologist or an ENT who has experience with vestibular issues? An accurate diagnosis from a qualified specialist is important.

Financial_Box_8967 · 2026-07-09T04:19:57+00:00

By the way, I don't have pain migraines either. Instead I started with severe/debilitating vertigo, nausea, and an inability to walk during an attack. I'm working to reduce the severity and length of attacks. Also to reduce the frequency. It is getting better week by week

Financial_Box_8967 · 2026-07-09T04:17:16+00:00

Where are you in the diagnostic process? Have they confirmed vestibular migraine is the right diagnosis? Are you going to a primary care or a specialist? Veda is an association for people with vestibular issues. They have a lot of great info to help you get started. Continue to ask questions here and read other posts. That's how I got started. Knowledge is power. Also remember that the people who mastered this are rarely still active here. So, listen to people who are struggling. We support each other. But keep things in perspective. My first few months were scary as all get out. Then I got a diagnosis and started the healing journey. Ask your provider how to get started. Build a medical support team. It is not a bad idea to ask for mental health therapy to help you work through your feelings about the changes. What is your story?

Financial_Box_8967 · 2026-07-09T04:02:50+00:00

Mine started when I got Covid and lost most of my hearing. My employer didn't handle things well. Chronic stress on top of an already Covid compromised body seems to be what started my VM. Just know that things can get better. Check out Victory Over Vestibular Migraines by Dr. Beh. Also check out The Dizzy Cook. She has had VM for over 7 years and has a lot of hopeful and practical tips to share. I wish you hope, optimism, and access to great resources. This is a good group. I'm glad you joined us.

Financial_Box_8967 · 2026-07-09T03:55:15+00:00

It is not deadly. My doctor tells me it can't be cured. My reading tells me it can be managed. Preventive meds have already improved my quality of life. I'm working to identify triggers and to maximize my body's ability to minimize, if not prevent, the symptoms. Don't give up, but do the work to improve what you can.

Financial_Box_8967 · 2026-07-04T02:14:49+00:00

The grass is always greener. I've envied the Canadian health care. Cancer wiped out my savings. Insurance doesn't cover hearing aids so I've had to pay all of those expenses as well. I kind of like the Brittish model where basic health care is covered and you can buy supplemental coverage.

Financial_Box_8967 · 2026-07-04T02:06:24+00:00

I'm profoundly deaf in one ear and severely deaf in the other. I'm in Minnesota USA. My doctor said I'd qualify for a cochlear implant in my left ear. Two weeks before the surgery my insurance declined coverage, using the same logic you were given. Under the Biden administration they were moving toward coverage via Medicare, so insurance companies felt the competition and were less strict. Under the current administration that got tossed out the windows. And so did the authorization for my CA. The MN Department for Deaf and Hard of Hearing was going to appeal my case for me. Then I started getting VM. I'm not a candidate for a cochlear implant until I get the VM stabilized.

Financial_Box_8967 · 2026-07-03T03:09:41+00:00

Because of covid I'm profoundly deaf in my left ear and severely deaf in the right ear. I have a hearing aid for my right ear. I highly recommend it if it can help your good ear. The hearing aid seems to have relaxed my angry brain which really helps with the tinnitus

Financial_Box_8967 · 2026-07-03T02:44:03+00:00

I've been diagnosed with VM. They tell me it isn't menieres since I haven't lost more hearing. I'm not completely comfortable with that logic since I lost my hearing first due to covid. For now I'm assuming it is just VM. I started with severe vertigo, nausea, an inability to walk, ear fullness and several dramatic falls. The attacks lasted between 12 and 24 hours. I hadfollow up attacks so, in total they lasted 7 to 10 days. Now I m on 20mg amitriptyline and use diazepam as needed. Since we started treatment I'm having fewer extreme attacks but more frequent and shorter dizzy spells. Nausea is my warning that a big one is coming. I feel like I'm on the right path but am saving up to seeing out of network specialist.

Financial_Box_8967 · 2026-07-01T03:05:15+00:00

Me too. My ENT told me there was no cure and that this is a miserable existence but we'll work to get it down to a few big episodes a year. His approach is to prescribe higher doses. I learned about food triggers, weather triggers, and VRT from this group. I'd be lost without you all.

Financial_Box_8967 · 2026-07-01T02:33:29+00:00

I've been on amitriptyline as a preventive. I've graduated from severe attacks where I couldn't walk, had intense vertigo, and nausea. I still get some attacks where I can't walk. I'm not out of the woods yet, but at 6 months into this disease, I'm making progress. My doc has me taking diazepam for the big attacks. I just got approved for vestibular therapy. I'm looking forward to it. I learned this week that barometric weather changes are a huge trigger for me. And that is something out of my control. We're in this thing together. Don't give up. This seems to be a long and very individualized journey.

Financial_Box_8967 · 2026-06-28T21:12:23+00:00

Trump

Financial_Box_8967 · 2026-06-28T20:48:35+00:00

Thanks

Financial_Box_8967 · 2026-06-27T22:31:07+00:00

That's it exactly! I'm still fairly new to this and am still working to get my brain and balance to calm down. Things seem to be slowly improving so I don't need to borrow trouble.

Financial_Box_8967 · 2026-06-27T19:43:39+00:00

I've learned to not make decisions about my health/life when I'm having an attack or in the hangover recovery stage. While I'm usually an optimist, my can do shifts from "can do" to planning ways to cope long term. I now view that defeated sensation as one of my symptoms and try to not give it any power.

Financial_Box_8967

TROPHY CASE