I'm so scared. : Hi all, I've suffered... - My MSAA Community

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I'm so scared.

Contra21 profile image
24 Replies

Hi all, I've suffered from vestibular migraine 10 years. 3 months ago I suffered a horrible attack and asked for an mri to reveal 2 lesions. Saw neurologist and spine clear, bloods clear and said we can't confirm it yet so another mri in 3 months to see if any changes. He thinks ms .This dizziness and vertigo is killing me. Anyone else can help me,? I don't know of is the vm , anxiety or ms , I don't want ms I've been such whole life. No thyroid, stress, gallbladder remival just in June, stress how dizziness is back with avengance. I'm bed bound

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Contra21 profile image
Contra21
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24 Replies
NanciG profile image
NanciG

So sorry you are going through this. It seems that during the interim while you wait for another MRI that the doctor should be treating the symptoms. I am not familiar with how your healthcare system works, but would think if they can't help alleviate symptoms that a second opinion would be in order.

CatsandCars profile image
CatsandCars

I'm so sorry you are going through all this. Nobody wants MS, but fortunately you haven't been diagnosed with it. You may not be, and even if you were, there are more treatments to help reduce progression than ever before. Yes, it sucks, but try not to get ahead of yourself.

I'm afraid I'm not familiar with vestibular migraines, but they sound terrible. Do you feel your neurologist is helping you? Because it might help to get a second opinion if you feel you're not getting enough information.

I do, however, know about anxiety. Especially health anxiety. And that is probably the area you might want to focus on right now. Find yourself a good therapist. Cognitive Behavioral Therapy works well for anxiety. Then find a psychiatrist and see if they feel you need something for the anxiety. You may not need to stay on it forever, but unless I'm mistaken you sound panicked about your health. It's completely human and understandable, but you don't have to suffer with this level of anxiety. It is, ironically, bad for your health to be so worried about your health. 😊

In the meantime you can try meditation apps to help calm you down. Ask your doctor if taking magnesium glycinate might help. Call a friend. Have some camomile tea. Be kind to yourself.

Best of luck to you. Please come back and let us know how you're doing!

Contra21 profile image
Contra21 in reply toCatsandCars

Thankyou so much for replying. It's so hard. Do you have ms of so may I ask a few questions?

Contra21 profile image
Contra21 in reply toCatsandCars

Do you get debilitating vertigo?

CatsandCars profile image
CatsandCars in reply toContra21

No, I don't. It sounds horrible.

Contra21 profile image
Contra21 in reply toCatsandCars

It's debilitating. Did you have lesions on spine too? Having trouble understanding all of this

CatsandCars profile image
CatsandCars in reply toContra21

Yeah, I do, at the neck level. I know, I don't always understand everything, either. But if you get a doctor you trust and some support it will help. I was actually kind of relieved to be diagnosed, to be honest. For me it was better than not knowing what was going on, which is where you are now. So I get it. I really hope you get some answers soon.

Contra21 profile image
Contra21 in reply toCatsandCars

Do you eat a specific diet?

CatsandCars profile image
CatsandCars in reply toContra21

No, I don't.

Contra21 profile image
Contra21 in reply toCatsandCars

Hi again, do you get pins and needles all day?

CatsandCars profile image
CatsandCars in reply toContra21

No, I do have sensory problems in my legs - feelings of weakness, some tingling after walking, and during a relapse I've had shooting electrical sensation from the slightest exertion. I've had some vibrating feelings in my legs at night, and sometimes I briefly have feelings like hot specks of sand are flying into my skin in various places. Thankfully it doesn't usually last long. It's really important to understand that everyone is different, though.

AquaZumbaFan profile image
AquaZumbaFan in reply toCatsandCars

So beautifully said CatsandCars!

CatsandCars profile image
CatsandCars in reply toAquaZumbaFan

Thanks!

ms23 profile image
ms23

I am sorry you are facing such challenges. Have you been evaluated by an ENT (otolaryngologist)? An ENT can do testing and set you up with vestibular rehabilitation if it is appropriate for you. It can be highly effective and might be worth looking into. I hope you get some relief soon.

Contra21 profile image
Contra21 in reply toms23

Did it , 3 years ago all of it. Did ask the tests. See s rehabilitation time to time note but the one and needles I can't tell if it's anxiety or I don't know.. just feel stuck. Is the dizziness my vm or this b possible ms . Scary pins and needles in hands and feet

ahrogers profile image
ahrogers in reply toContra21

Did they try the epley maneuver at rehab? I get both MS vertigo that is manageable with Gabapentin and bppv which requires the epley maneuver to manage. I learned how to do the epley maneuver on myself and have to do it several times every few months to fix it.Vertigo really suck! I hope they can at least decrease the intensity if not eliminate it.

Contra21 profile image
Contra21 in reply toahrogers

How do you know when is ms vertigo? What of lessons are from migraine or not ms? I've done all vesicular therapy

ahrogers profile image
ahrogers in reply toContra21

If I don't spin when I do the epley maneuver I know it is MS and not loose inner ear crystals

Contra21 profile image
Contra21 in reply toahrogers

No spinning is ms? Do you eat a certain way? I'm dizzy daily. Pins and needles in hands and feet student this last month.

ahrogers profile image
ahrogers in reply toContra21

I don't follow any special diet but I don't eat a lot of processed foods normally, other than chips. I periodically go on a low carb diet and plan to do that again soon and stay on it for a month or so. I think if you have a MS lesion in a particular place it can cause spinning. My neuro had me try Dramamine first but it didn't work. Then she gave me Gabapentin that helped with the chronic slow spinning but didn't help the positional spinning. When I went to physical therapy the therapist did the epley maneuver and that pretty much resolved the positional spinning, at least for a while. It was a game changer for my qualityof life. I have to do the epley every few months to get the loose crystals in the inner ear to set correctly again. If I go a long time between doing the epley maneuver the spinning that happens when you perform the epley maneuver is quite bad. It is worth going through that bad spin to decrease the daily spinning though.

mrsmike9 profile image
mrsmike9

Don't be afraid if you do have MS. At least it would be an answer and you can get the meds you need.

Scout4x4 profile image
Scout4x4

Contra21, we have communicated previously. I have the same symptoms as you just not as severe. This is a MS issue and it's life changing. There are very few medications that eleveat the symptoms. Have you had the epley maneuver done? It hasn't helped me much but we are all different. I know the last time I mentioned the medications that have helped me.

I understand your depression and fear. I was seeing a psychologist but this group has helped me more.

You need to stay strong and work on life style changes that will let live your best life.

Contra21 profile image
Contra21 in reply toScout4x4

Epley is useless for he , how to know its an ms issue?

Scout4x4 profile image
Scout4x4

It doesn't mean it's an MS issue. What it does mean is that you have loose crystals in your ears and they are trying to reset them. ENT's can't do anything about it nor can a vestibular specialist.

I know my issue is MS is that I have lessions on my vestibular nerve and around that area. The vestibular nerve controls the crystals in your ears.

Mine was picked up on a cervical spine MRI. I have more lesions in my neck that I do on the brain.

Hope that answers some of your questions.

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