Are you incapacitated by fear?

[Bewildered1]

I have to undergo testing to check for MS but I’m already convinced that I have it. I have chronic feelings of being off balance and I have vertigo a lot. To me, it’s one of the most incapicitating symptoms, you can have.
Medication doesn’t help much. Last year, I was bedridden for 4 months with severe vertigo and I live in constant fear of this happening again.
I’m afraid to leave the house. Plus, having chronic dizziness isn’t conducive to much activity. I don’t think i’ll ever be able to be more than a few minutes away from home. It’s impossible to live like this.

I was wondering if having MS and fear of your current and/or future symptoms keeps you from living as notmal a life as you can?

For those with vertigo/dizziness, are you incapicitated by it?

[Ant1981]

Fear

I have to undergo testing to check for MS but I’m already convinced that I have it. I have chronic feelings of being off balance and I have vertigo a lot. To me, it’s one of the most incapicitating symptoms, you can have.
Medication doesn’t help much. Last year, I was bedridden for 4 months with severe vertigo and I live in constant fear of this happening again.
I’m afraid to leave the house. Plus, having chronic dizziness isn’t conducive to much activity. I don’t think i’ll ever be able to be more than a few minutes away from home. It’s impossible to live like this.

I was wondering if having MS and fear of your current and/or future symptoms keeps you from living as notmal a life as you can?

For those with vertigo/dizziness, are you incapicitated by it?

I do fear the future and anxiety creeps in now every now and then but I quiet it with being active. Being newly dx my initial flare was gruesome, the recovery is fantastic so I'm riding the good feelings, I'm running on treadmill, back to my old weightlifting routine (pre-dx) working on a stone pillar project at my parents, going back 2 school back to work (although a different role) going on a 180 km Johnson MS BIKE event so it's not keeping from living a normal life, in fact quite the contrary I'm living better than pre dx but still think about the future a lot, fear and anxiety are there but I'm too busy to notice most times.

i know some ppl here struggle Here and I'm aware of that but just like to share how I deal with the fear, I'm doing well, tommorow who knows?!?

[marti]

I completely understand and sympathize with you about the dizziness. It was one of my first symptoms and has not let up much since 2001. But, there are times it does disappear for awhile. Hang onto that hope.

I have several autoimmune problems and a very sick husband so I get the crippling fear... every day... all the time. I don't worry much about the MS because I have so many other things to worry about.

If you get a diagnosis, you will deal with it and learn how to handle it. It might not be so bad. We tend to expect the worst, but are sometimes pleasantly surprised that things are not so bad. The dizziness is a hard one to treat. Best of luck to you.

[Jules A]

I can not imagine having constant vertigo, my short bouts have been horrible. My heart goes out to you and I hope doctors are able to assist with medication and therapy recommendations to help.

As for the fear that comes with having a chronic progressive disease, yes, its always there in the background although it tends to motivate me to work harder now in fear of what the future might bring so more activating than debilitating in my case.

[pennstater]

Sorry to hear about your vertigo. I had it for 6 weeks as part of my first flare. Flares since mostly have vertigo as a part of it. I also struggle with dizziness off and on.

For me, Meclizine didn't seem to help alot,but knocked me out, so Isleot thru alot of it. As part of flares, IV Solumedrol took the edge off the vertigo, leaving me more with a dizzy feeling. My neuro prescribed vestibular therapy, a form of Physical therapy,which did help. When I start getting dizziness on a more frequent basis, I break out my PT exercises. I should do them continuously, but sometimes I get away from it.

For anxiety, I would recommend working with a therapist on skills that help deal with it. Mindfulness is one form.

I hope you feel better soon and get some answers. If it does turn out to be MS, a lot of medicines now exist to try to reduce/eliminate flares and progression. Take it a day at a time, even an hour at a time.

[Tawanda]

MRI?

Have you scheduled an MRI? I was told this is still the "Gold Standard" for diagnosing MS. I have MS and occasional splells of vertigo. However, vertigo has many other causes as you probably know. I hope you find the answers, and more importantly, some relief. Let us know how it's going...

[rdmc]

Sorry to hear about your vertigo...that's a tough one. I have suffered with it occasionally, but it usually calmed down after a day or two. I normally take Clonazepam for my facial spasm and
my neuro says when the vertigo hits, to take an extra "benzo" and that does help to calm it down.
My PTs have also taught me the Epply Maneuver...and some of the time, that helps. I'd think
a referral to a physical therapist would be a good idea.

Now as to fear about going out and about, I think we all have experienced it, on one level or another.

Used to be just driving a couple blocks to pick up my son (this was years ago) was a cause for
heart pounding and seemed so scary. My sister taught me a coping therapy and it has served
me well over the years. Even as I've become more debilitated, my fear level has gone down.

Her method is to take the "fear or whatever" and take it to the worst possible scenario. Figure
out a way to deal with that worst possible moment and have a plan. Then you have a relief valve
if things do go bad.

For instance, I went to a wedding for one of my family member last Saturday.
Outside wedding (we're in Florida) and large inside seated reception with well over 100 people (and all the noise that's made by 100 pairs of utensils being used to eat...the utensil noise is a real
irritant for me in public places) and add to that music, DJ, 8 folks at the table talking, and the
evening could have made me a mess. BUT, like so many MS things, sometimes the triggers
are really strong, sometimes the triggers are bearable. And I was able to deal with all the
noise, etc. Only thing we hadn't planned for was the heat and sun being as intense at 7 PM as
it was, so we watched the wedding from our car with the AC on.

Forgive the length of the post, here's how I go worst case scenario. We get there, the
music is unbearable, the noise level grating on my nerves, etc. I can go home at any time,
I could just say a few words and I'd have been home in 20 minutes. And if my husband
had wanted to stay and I needed to go, there are more than a dozen people there that'd take
me home, then return to the wedding. Knowing, that at any time, relief from those triggers
is possible, makes it easier to endure the symptoms that I'm having.

I don't know if any of that makes sense, but don't not try activities because you're afraid of how
it might make you feel. So many times I've been able to have a great time at a gathering that I
was dreading and thought I couldn't deal with.

I watch a daily vlog of a 30ish woman and her husband, she battles Cystic Fibrosis. So much
of the time she's feeling crummy and she goes anyway, knowing she can leave, but also knowing she may have a good time. If anybody's interested the vlog is The Frey Life, and one of their coping chants they use (and I now have some sweatshirts with these words on the.) " Do what you think you can't do." If I did only what I thought I could do....I'd be pretty limited. But trying to do what I don't think I can do (as far as putting myself out into public) has amazed me (this is not to say you won't spend the next 2 days on the couch replenishing, that does happen.

Sorry for the long post. It's just in my 20 year dealing with the disease I now do things so much
differently than early in the disease. I think my psyche could have been so much better if I knew then what I know now.

Hang in there.

[KoKo]

rdmc

Great post!

Thanks for sharing your experience and hope in dealing with the fear of going out in public!

Take Care

[Mamabug]

...

I was wondering if having MS and fear of your current and/or future symptoms keeps you from living as notmal a life as you can?

For those with vertigo/dizziness, are you incapicitated by it?

I'm not really incapacitated by fear. I try to anticipate situations, and what I'm able to do or not do, and just make a plan. We all have different limitations.

Lately, for me, that plan has included taking a cane whenever I leave the house; I'm just at that point. Sometimes, the plan involves using a wheelchair, such as at airports, museums, zoos, etc, where the walking is more than I can manage.
Often, if the activity involves a good part of the day, the plan needs to include where I can take a nap.
Sometimes, if the activity involves food with a lot of gluten, the plan is simply how to choose foods that have less gluten in them.

Regarding your dizziness/ vertigo, I'm sorry. That's hard. I went through some pretty severe dizziness for a month or so during my first flare -- I truly couldn't do more than recline in a chair at home, mostly. If I got up, even sometimes for as short a time as to use the restroom, I was so dizzy that I vomited.

For me, the solution was physical therapy. My physical therapist had some training in vestibular PT and she was able to give me exercises that re-trained my brain to tolerate the movements that triggered the dizziness. I don't have it at all anymore.

[Seasha]

Great suggestions and stories everyone! I love the story of the two wolves from the Cherokee culture which goes something like this:

A grandfather, talking to his grandson, says there are two wolves battling inside us.
One filled with fear, greed, self-pity, sorrow, etc.
The other is filled with hope, love, faith, compassion, etc.

The grandson asks, "Which wolf wins?"
Grandfather says, "The one you are feeding."

I remind myself of this when things get tough.

[Cat Mom]

A grandfather, talking to his grandson, says there are two wolves battling inside us.
One filled with fear, greed, self-pity, sorrow, etc.
The other is filled with hope, love, faith, compassion, etc.

The grandson asks, "Which wolf wins?"
Grandfather says, "The one you are feeding."

I LOVE this, will definitely remind myself of this when I'm scared!
Jen

[pennstater]

Rdmc - great post. It speaks for many of us.

Seasha - loved the wolf story. Now, I just have to read it alot to retain it!

[ladybug162]

Wow, I can’t even imagine having chronic vertigo and dizziness. I’m so sorry!

When I was diagnosed with MS, I knew nothing about the disease or what the symptoms were. It came as a complete shock to me. I was diagnosed after going completely blind in one eye at age 29. Looking back, I wonder if the horrible bout of vertigo I experienced in my early twenties was related.

I’m now 35 and thankfully haven’t had anymore relapses. Since being diagnosed I’ve researched all I could about the disease and read about people’s stories who have it. It’s completely scary thinking about what the future could hold. Wondering if/when I’ll become immobile?

Like others have said though, we can’t allow fear to control us. The future is uncertain for everyone, MS or not. A person without MS could be involved in a horrible accident and wake up paralyzed. There is just no way of knowing what the future holds. No need to worry about something that is beyond our control.

Just know that you’re not alone. And remember, there’s nothing to fear, but fear itself. Hope your dizziness and vertigo gets better! Take care of yourself.

[tl-tr3]

I was once totally

incapacitated by dizziness/vertigo. I had to be hospitalized for it because I couldn't walk, eat (nausea), or even open my eyes for days.

Long story short- weeks of vestibular therapy & low dose Valium-(which I still take daily) have helped me recover to walking -carefully-without an aid anymore- walker or cane.
I can't do any of the balance tests during my Neuro tests. I fear,probably every day,that I will end up not being able to walk again.

I hope you get relief from dizziness.
Take care.