Things we had to give up

Hello all,

I was just wondering what all people have had to give up or change how they did in order to help themselves cope.

For me, I have had to give up smoked meats, and over processed food, crowded areas, walking long distances outside, (I can walk just fine most of the time inside a lot further than I can outside) walking without shoes, (I have broken my toes a few times walking into corners) staying up late, sleeping in late, shopping during peak hours.

Anyway, just curious.

Brian

Hi Brian,

Nice question.

I’m housebound except for walking (I feel like Forrest Gump - he was RUNNING! - well, I’m WALKING!) :slight_smile: so i’ll refrain from listing all the outside activities I’ve given up, except for what was dearest to me - my 3-4 day a week ballet classes.

I’ve given up allowing anyone into the house for more than a very short time - the noise, the floors vibrating with their walking, all too much for me.

I’ve given up most of what I used to eat. I thought I ate a very good diet, until I looked at the migraine diet - everything had to go and I had to figure out from scratch what the heck to eat. I lost some pounds along the way, but I’m enjoying my new diet.

Luckily I run a business from my home and it virtually runs itself, but I can no longer meet with clients. That’s worked out fine so far - if any one of my clients had seen me last year they would have fired me. If I really HAD to have a meeting now, I think I might be able to fake my way through (with a hefty dose of Valium).

I can no longer watch movies with my husband. It’s one of his favorite things to do and a bit of a Friday night ritual. I cannot stand the noise or the visual stimulation.

READING! I used to LOVE to read. Rushdie was my favorite.

Sitting on the swing on the deck with my dog - we live in the woods and have a deck that is off the second story, it’s like a tree house. I can lie out there for short times, but no sitting and just gazing into the woods.

Can’t let the dog or cat in the bed with me - too motion intolerant.

My long baths - forget about sitting in water - it moves too much. I jump in and out of the shower real quick instead.

Having any kind of social life with my husband - he socializes on his own now - that’s very sad to me.

I’m sure I could bore you with many more things I’ve given up, but now I need to remind myself what I’m lucky for - that i’m not lying in bed virutally 24 hours a day, wishing I would die, visual, auditory and bodily aura so bad it was driving me crazy (even a couple of time distortions which were really scarey), deeply depressed with no will to live, not like this. I feel lucky to be where I am now, grateful for the care i have received, although it could have been better, and hope I continue to improve. But if I don’t, I’ll take it, somehow.

I was talking to my Mom last night on the phone. My Dad died about 18 months ago and she wants to die. She keeps saying she wishes she had gone too. I tell her I know how she feels (cause I really do), that I would wake up each morning and count the dreadful hours until it was time to go to sleep again, praying that something horrible (like falling through the floor) wouldn’t happen in between. But I told her “we’re not dead yet - life goes on, for now” Sorry for going off topic - just me rambling.

Julie

Brian, It varies by how I’m feeling–sailing, kayaking, horseback riding–sometimes tennis. My ability to work is severely restricted–I need to limit my hours and make sure I get enough sleep. I feel disabled. Only recently did we attempt any kind of performance–plays, ballet, symphony–and I get an aisle seat, and tell my husband that he has to leave if I say so. Social life: I get tired, sometimes it’s hard to stand–it’s minimal at best. The only people who come over are family and a rare friend. Cooking–I get too nauseated.
I’ve lost weight…
A sense of myself as healthy and able to just go out into the world without considering how it will affect me: there was a time when I couldn’t do the super market, now I can in brief amounts.
Traveling.
I was talking to a co-worker about a terrible tragedy: a wonderful psychologist’s relatively young wife just collapsed with metastatic lung cancer–and she’s not a smoker. My co-worker has significant migraine disease. I told him that I feel terrible about the situation with the psychologist and his wife, and when I heard I thought that my problems were insignificant. But, then I realized that we all have our issues and empathizing with another person’s tragedy, didn’t make my issues any less real.
A few weeks ago it was really rough, and I said to my husband, whose life has been curtailed because of me–no travel, social life–“It s@@#ks to be me.”
In the past, when it was so horrible, I couldn’t even walk in a store, and I couldn’t believe that my life had become this terrible burden.
My life is defined by this disease, and I resent that terribly. I also live with a sense of uncertainty, because it has flared unexpectedly.
When my younger daughter was in the hospital with a status migraine that was predominantly MAV–and she “lost” the next year of her life to unremitting vertigo, but white knuckled her way through high school, and is now away at college and stable on nortiptyline—and I watched her gain weight from the drug, lose her friends, spend her weekends in a dark room taking imitrex–I was told: “At least she doesn’t have cancer.” As though we can negate our suffering.
I resent having this problem, and at times I"m ashamed that I have it.
Thank goodness I’m on zoloft now, because I sure needed some mood improvement, after having this in some form or another for 30+ years–but incapacitating since 2003 (with some rumbles in 2001).
I’m rambling too, so I’ll stop.
Kira

i’m sure many of us have used that line: “at least we don’t have cancer” Well, last summer, my husband and I MORE often said, “if ONLY I had cancer” At least we would know what the heck we were dealing with, have an idea of the course, outcome, etc. And you know that one way or another there will be an end to it. (And I don’t speak of this naievly, i watched my sister fight colon cancer) This illness can be such a horrifying experience.

Another thing my Mom mentioned last night is that it’s so much worse for me than for her, because I have so many years to “look forward” to living with this. At least she knows she’ll be going soon. We are so young to be so sick. I hate it when I hear of young people, like Kira’s daughter, and my niece, having to struggle with this.

P.S. I have a friend who is “mouthy” - she says angrily “I shouldn’t have to think of the worst tragedies in the world in order to feel good about my life”

Hey Brain…great question! Currently i have to minimize my socializing…not to over due it. I cannot live on 6.5 or even 7 hours of sleep anymore. I need atleast 7.5 to 8 or more per night. I have to go to sleep each night around the same time…keep it very structured. Cannot go to sleep one night at 8:30pm and the next night at 10:00 pm…it just doesn’t work for me anymore. I feel as though i’m a fairly fragile person now so i have not taken any more trips that take alot of flight time…like going to Hawaii (from L.A.) or even to Europe. In 1999 when things were still very rough i took a trip to Hawaii and soon as i arrived at my friends house i began to have severe vertigo…it was a nightmare! So 3 years later i finally got the confidence enough to get on a Jet again…i decided with a short frip from L.A. to San Francisco which went ok but had a slight episode of vertigo when returning home. Then a year later i went a little further…to Kansas City and overall not too bad. So I am thinking maybe in the future i might try Hawaii again or maybe …the East Coast. I stay away from intense Action films when going to the movies…plus for the most part stay away from Chocolate, Alcohol, Caffeeine. I treat myself once in awhile to a Snicker candy bar…but cannot do it very much…same goes for coffee…on weekends i allow about a 1/2 cup of Folgers but during the week no coffee at all. Plus i have to stay with part-time work…i am absolutely certain i cannot work full-time at this point.

Joe

Hi Brian,
well that’s a big question isn’t it? Like the other posts, can’t begin to think where to even start - my whole life has been altered by MAV and I suppose it’s just how we cope with our newfound altered state that gets you through the day.
Can’t work (have been offerred two really great jobs since I’ve been sick and had to decline); can’t exercise for long periods of time, can’t socialise (and I was very social!) which impacts on my poor husband. I too, like Julie have now encouraged him to seek company outside the home so he can have a life while I hibernate within my four walls. Can’t read or watch tv for extended periods, can’t travel (which I did quite a bit of).
Have tried my best to settle into my ‘new’ lifestyle, enjoy sitting on the back step having a cuppa during the day, don’t do too many tasks in a day, am assisted by a cleaning lady to do my housework, give my most available energy to conversations with my husband and two kids (18 and 19 yrs old), go out for lunch instead of dinner but only with very limited company and I let them do the talking!!
Oh and the list goes on…
Oh…and find solace with the MAV companions I’ve found on this forum and the endless support and great advice and information glady given to me.
cheers to all and much good health :stuck_out_tongue:
Judy

Julie…my heart goes out to you. Sounds like your MAV symptoms are severe! Even when things were very rocky for me a number of years ago i don’t think it was as bad as your symptoms. Atleast i can socialize. But if were not to take medication daily i would probably be in a similar condition you are. The one tab of Xanex helps me to socialize and attend an occasional movie and work part-time and basically feel more stationary. I hope you find a medication that will give you some relief.

Joe

You ladies have mentioned something that I didn’t think about and have never put much thought to: socialization. I have never been a social bug, and my wife is dependant on me for transportation. Now with the MAV I have quit almost all socializing and it realy irks my wife because she feels trapped in the house. As if I didn’t. I do most of the shopping, and I try to do it alone without the wife or kids because it is just to much for me to keep track of and leaves me curled up on the couch when we get back. I try to encourage her to go out and do things without me, but that usually doesn’t go to far. In the end, neither of us have many friends these days.

Thanks Joe, but I’m okay. I’m so much better than I was a year ago. Back then I could barely make it to the bathroom. It was so scarey, the rapid downhill course I was on. Sometimes I shudder to think where I would have ended up if not for some treatment. I kept saying, it can’t get any worse! but it did, week by week. and it wasn’t episodes, it was constant extremely severe motion, seeing it and feeling it, extreme motion intolerance. on a scale of 1 to 10 it was 100.

I really am much better now, even though I’m still really sick. I give credit to all the meds I’m on Zoloft, Neurontin, and MOSTLY Klonopin, which has out-performed them all and to the members of this forum who have been so helpful in support and guidance. Could not have done it without you guys.

Hang in there, all,

Julie

Julie…glad you have made progress. I feel like you…if it werent’ for Xanex…i don’t know where i would be either?? I shudder to think! It is interesting how anti-anxiety medication seems to help many of us.

Keep getting better…there has got to be a light at the end of the tunnel

Joe

Living.

I’m a floating, bouncing, corpse.

Heather

Another thing came to me last night. This would be better posted under a heading of “things we’ve lost,” but I’ll go ahead and post it here.

When I was at my worst, I lost connection with my inner self. I am introverted by nature and valued more than anything else access to the richness of my inner goings on. I would wake each morning and journal my dreams while eating breakfast, etc. With this connection, I could always find some peace in a world filled with turmoil.

With my last, and biggest, big crash, I landed in a Major Depression. When I looked inward, I saw and felt only darkness and fear and badness. I had no sense of life having meaning anymore and didn’t know what I would do without that. In short, I was black.

The area of my largest improvement may well be my reconnection with myself. It has happened, and continues to happen, slowly, but surely. I think that’s what gives me the most hope. As long as I can maintain my inner connectedness, all else will be fine, and as it is meant to be.

Thanks for the thought-provoking thread, Brian.

Julie

Julie,

I completely identify with what you wrote.
I have lost my connectedness.
I keep a journal and every day is uglier than the previous.
It is blackness.

For years I had the nickname “funster” because I was so much fun and would laugh and joke with people all day, even total strangers.
I always told people that a day without laughter was the day of death.
By my own standards, that means I died.

I once laughed at least 10 times a day or more.
I now cry that much each day.

I know not who I am or where I am going.
I know not what it is to be alive anymore.

What’s worse is, not knowing if you have an infection eating up your brain/bones because of stupid doctors.
I’ve been to 4 ENT’s about my spehenoid sinusitis. 2 think it’s a fungal ball, one said it can kill ya, but no big deal.
I’d be less flipped out if I had an ENT I trusted, but I trust none of them.

I am sick of getting up every morning with my head feeling like a ton of bricks is attached to the back of my head.
My neck is involved and all this is downright scary when you feel you can’t move your neck correctly–it’s now always stiff.
Each day I don’t know what eye is going to have blurred vision.
What do I need, 20 ENTS before finding one with a brain?

11 years ago a Doc at Mayo Clinic said to me,
“I have a prediction about you: One day you will have to save your own life.”
“You are referring to doctor error.”
“You’re damn right I am,” he said.

Heather

Heather,

I got chills up my spine - if I’m prying, just tell me to mind my own business, but i have to ask: What made him say that to you?

BTW, I left out of my story, above, that my Monstrous Crash and Major Depression were a direct result of a homeopathic remedy I was given.

Julie

Edited

Brian,

Again, I want to thank you for this thought and emotion-provoking thread. For me, the road to health has and will include consciously processing/grieving my losses, as well as re-prioritizing what is important to me. In order to do that, I need to be aware - of what I’ve lost, given up, and what those things actually means to me. Sharing these things with others has been **nothing but **therapeutic to me.

It’s what I love about this board, it’s been a place to find top-notch information on MAV and its treatment, as well as to share honestly my experience of it.

Julie

— Begin quote from "Julie"

Heather,

I got chills up my spine - if I’m prying, just tell me to mind my own business, but i have to ask: What made him say that to you?

— End quote

Nah, not prying at all.
My favorite Doc of all time is at Mayo. I used to live in Scottsdale, where 3 of my Docs were Mayo Docs.He was by far the best Doc I ever met for many reasons.
He called me his “miracle patient.”
It’s a pretty long story but what happened was I was continuously misdiagnosed from the moment I walked into the ER in Scottsdale
until I hit the doors of Mayo. I had to do the diagnostic work myself, while the doctors got paid.

I knew I had a bladder infection but ER said no. I told the nurse she was wrong. She gave me a med for “bladder spasms” (oh please.)
Took the med and within 2 hours I had stabbing abdominal pain.
Next morning I called her in the ER and told her if I wasn’t a law-abiding citizen I would come up there and beat her within an inch of her life.
“No need for hosility!” she shouted in the phone (LOL)
So I go to a GP (who I never met) and happened to be listed in the “Top Docs of Phoenix” issue.
GP says, no bladder infection and, “Maybe the reason your crotch is fire-engine red is simply because you are wiping too much”
Truth? The *astard let me walk out of his office with a bladder and yeast infection. (Picture how much pain you would be in with 2 untreated infections)
So, idiot gives me Bentyl, which will mask the symptoms.
I was smart enough to get off the drug because I knew damn well I had an infection but couldn’t understand why it was eluding these idiots.
I then go to an NP of all people, tell her my symptoms and in 2 seconds says “who on earth told you you didn’t have an infection???
I can hear your symptoms, you probaby have 2 infections.”
I did.

Problem was, it was a bitch to get rid of them.

However I knew that it went beyond infections, something was wrong with my bladder and I knew it.
What sucked was-- no internet, no google, no computer in 1997. I had to do it the hard way-- books and my brain.
As fate would have it, when she DX’d me with the yeast infection, she wanted me to buy a book entitled: The Yeast Connection and The Woman.
Little did I realize that in that book would be my bladder DX.
I read the case histories and knew right away I had a major problem (at least it was major back then, compared to what I have now, it’s nothing!)
The correct DX was interstitial cystitis, and I knew it. No 2 ways about it.

So I set out to get corroboration of my own DX.
I go to 2 urologists who were complete morons.
The worst of all was going to a female internist who upon hearing my symptoms asked when my last HIV test was? LOL.
I asked her what on earth would lead her to even think such a thing.
She said “well, you have such a plethora of symptoms.” Plethora. God I’ll never forget that damn word she chose.
“So plethora of symptoms= HIV to you? Where did you go to med school, K-mart?”
At that point, I was waiting for a cat fight to ensue.

Upon me telling her I thought I had Interstitial cystitis, she said to me, “That’s a rare illness and I think we should look at other things first.”
“Like what,” I said. " HI *ucking V?"

I was fuming.

Dripping with sarcasm she said, “Before you go running off to another urologist, I think you should have a laparoscopy”
“Well at least you got the ‘scopy’ part right,” I said. " But what I need is a cystoscopy not a laparoscopy."
I HATED THIS WOMAN’S STUPIDITY.

So I had enough, and went to Mayo Clinic where I met a doctor with a brain. A Urologist.
When he walked into the room, my entire body relaxed and the words swept through my brain: this is your final stop.
It was.

I went through 6 months of hell with interstitial cystitis before meeting him.
When we met, he wanted to hear ALL the stories, not just my med history and symptoms.
Upon hearing about the HIV woman (lol) he hit the ceiling and yelled, “this is an outrage!!”
When he heard I knew my own DX and she ignored me, he said " She blew you off???"
Yup.

I was blasting the entire medical community in his office, but he said, “Heather I don’t usually like it when patients bash doctors,
but in your case, you have the right.”
With that, he stuck out his right arm and said, “Bash away!” :smiley:
He also told me I missed my calling and thought should go to med school to become a physician.
I still remember smirking and saying " It appears to me my having not gone to med school is why I DX’d myself correctly."
“Touche!” he said.

I loved the guy.
He said he had always heard of isolated cases of misdiagnosis but not repeated and consecutive cases like mine.
He told me there are very few patients who would have persevered to the end, knowing what they had, no matter what the docs said.
Sooooo that’s when he said, “I have a prediction about you.” And yeah, that’s when he told me I would have to save my own life one day.
He did add, “The good news is, you are smart enough to do it.”
I said, “oh, gee thanks. But isn’t it the doctor’s job to save my life?”
He said, “Is it?”

Clever guy.

I ended up having what is called hydrodistention on the bladder under a general.
I was terrified to go under a general, but upon seeing my terror in the prep area, he came in and said " Buck up Heather, Buck up!"
I couldn’t stop laughing at his sarcsam, and laughter extinguishes fear in me. Always has.
“Wheel me in” I said.

When I woke up, he was above me.
“Congrats, the inside of your bladder looks like raw hamburger. I have pictures, wanna see?”
LOL!
Then he shows me the photos.

Bottom line, after the procedure my illness went into full remission.
I called him my savior, and he called me his miracle patient. :smiley:

I think of him all the time, and knew his prediction would one day come true.
In a way, I feel like I am there.
Now.

Too many days I am fighting to keep from blacking out, and can barely walk.
There’s way more going on with me than a vestibular problem, and I know it.
Now I have to find a smart doc.
There aren’t many around.

I can think of no worse fate than to be in the worst health of your life
and have no doc you know and trust.

This is the second time in a lifetime this has happened to me this way.
Only I have more at stake this time.

Heather

Incredible story - thanks for sharing it. You have to fight from blacking out? I heard one other board member talk about fainting with her MAV. My niece has MAV and faints a lot - she can’t fight it though - she just melts.

I’ve read your other posts and found myself thinking the same thing - there’s more going on than a vestibular problem.

You need to find a doc as smart as you are and/or another miracle. For what it’s worth, I’ll pray that you get one.

Thanks again for the story, and, in the meantime, “Buck up, Heather” :slight_smile:

Julie

Heather, I get faint, and there are theories about dysfunction of the autonomic nervous system involved in vertigo/dizziness. I know of a person who has neurocardiogenic syncope, failed her tilt table test, and the EPS cardiologist recommended Paxil–when asked why, they said they have good responses with it, not quite sure why, but likely through neurotransmitters.
I was thinking about you and Pittsburgh, and there is a guru of dizziness there, Furman–who is an neuro-otologist at Pitt. He did some of the first work in “migraine related dizziness”. My otologist has talked about him for years.
Here’s his webpage
findadoc.upmc.com/PhysicianBioQu … ?ID=404&A=
Joseph M Furman at Eye and Ear Institute on Lathrop Street
Yes, we dizzy people have a plethora of problems, and there is no one answer, but I really hope you find someone you can work with soon.
Kira

— Begin quote from "kira"

Heather, I get faint, and there are theories about dysfunction of the autonomic nervous system involved in vertigo/dizziness. I know of a person who has neurocardiogenic syncope, failed her tilt table test, and the EPS cardiologist recommended Paxil–when asked why, they said they have good responses with it, not quite sure why, but likely through neurotransmitters.
I was thinking about you and Pittsburgh, and there is a guru of dizziness there, Furman–who is an neuro-otologist at Pitt. He did some of the first work in “migraine related dizziness”. My otologist has talked about him for years.
Here’s his webpage
findadoc.upmc.com/PhysicianBioQu … ?ID=404&A=
Joseph M Furman at Eye and Ear Institute on Lathrop Street
Yes, we dizzy people have a plethora of problems, and there is no one answer, but I really hope you find someone you can work with soon.
Kira

— End quote

Hi KIra,

Yup I know of Furman. A UPMC ENT called him, " THE MAN."
He wrote a book on vestibular disorders.
BUT, he refuses to see you unless you have the tests first.
No kidding. He will not see you.
I saw a guy under him, and told him my symptoms, which have actually gotten worse since I saw him.
Then I started having second thoughts about the Rotary chair, ENG nightmare.

I canceled the tests, and since I did, my appt. with Furman was automatically canceled to.
The drill is, they schedule your tests and you see Furman afterwards.
What a snob, if a Doc won’t see a patient w/out any tests first.
JMO.

I think Furman calls MAV, MARD . I also read he has RX’d Zoloft for it and I have no desire to take zoloft so . . . .
See my dilemma?

I think I have a nervous system problem too. Hypersensitivity.
My upsetting problem is my vision.
I cannot believe what is going on lately with reading glasses on as I use the computer.
I mean my God, for a month it was shooting pain so severe I was thinking occipital neuralgia.
Then it turned into almost wiping out on the floor when the glases would go on my face.
Now there is this HUGE pressure in the back of my head, like it’s going to explode and massive wave-like motion in my head.
Most people would say “I’m dizzy dammit” but it comes across as way more than that with me.
Frankly it scares the piss out of me. Thank God for Xanax. :smiley:
I was in hysterics when I switched from one pair of glasses to the other and in a second, the ground started bouncing so violently I couldn’t handle it.
It came from out of nowhere.
Can you imagine what it looks like to an outsider who can’t feel the ground bouncing like you can but sees you just freaking out?
Christ, we must look like lunatics with an invisible illness torturing us.

Heather

What I’ve missed.

The most important thing I’ve missed,
Is the time I lost with my daughter when she was growing up,
I spent “too” many days in a dark room, cover over my head crying.
Due to even my own whisper being too loud, someone turning a page would make my senses go wild.
That breaks my heart; she didn’t deserve to suffer because of my illness.
The impact Mav has on my family and friendships.
The guilt is horrendous.

My sanity
Self Respect.
Work, my independence.
Memory is shot.
Happiness.
Being Fit.

Things I’ve gained.

Learning not to stress the little stuff.
Learning to smell the roses.
I don’t suffer fools very well.
Learning to forgive others and myself
Learning to listen and to think before I speak, it was not a strong point of mine.
I’m sure there is hundreds more!

Thanks for that Brian, I feel pretty good today, thanks to you.
(((hugs)))