Meniere’s Treatments Guest Post – Susanna

Susanna, on a trip to see her son in England May, 2010.

Today my guest is Susanna, a lovely woman from Linköping in the southern part of Sweden.  She is married and has three “almost grown up kids”.  She was working in the school system, but last year she went on permanent sick leave from work.

Susanna has had Menières for about ten years, bilateral for three years.

She stresses that “with the support from my family and relatives life is pretty good today!”

Coping with my Menières by Susanna Ahlström

I had my first bad vertigo attack the summer of 2002.  Before that I had tinnitus, fullness in my ear, and a few minor dizzy attacks.  But this time I was really ill and the ENT doctor told me this was Menières.  I was sent home with a diuretic and some pills for seasickness.  And of course I was told to keep a low sodium diet.  I felt better after a few months and started working again.  But I never got rid of the tinnitus or the imbalance and the anxiety I felt was limiting my whole life.  My boss saw how I felt and helped me to see a therapist.  I meant to see her about 10 times – we had our sessions for two years.

After about 5 years I felt so much better and I started full time at work.  My tinnitus didn’t bother meat all, I felt almost normal then I got a new chief at work.  Let’s say this became a hard time at workand my Menière started bothering me again, now with several attacks a week.  A period of trying different treatments started:

Betaserc, the Serc
I´ve taken the pills for many years now, increasing the dosage several times from 8 mg per day till today when I take 64 mg.  This medication is meant to increase the blood flowing in the small vesselsin the inner ear.  I’m not sure if it really helps, but I don’t dare to stop taking it.

Diuretic
I´ve been taking this for many years now on a low dosage.  I can take an extra pill the days before myperiod begins when the body feels a bit swollen.  And I keep on taking this medication, maybe it helps a bit.

SPC-flakes
I´ve been eating these oat flakes with my yoghurt every morning for many years.  You take 1 gram of the flakes for every kilo you weigh, every day.  The oatflakes have been processed in a special way, malted, and contains something called Anti Secretion Factor which helps the body’s fluid and secretion level to be stable.  It´s rather expensive but my doctor prescribes it for me.  My stomach has never been better!!

Tube
I had a tube put in through my eardrum in one ear while I was waiting for the Meniett.  I was able to borrow the Meniett from the hospital to see if this was something for me.  I felt less pressure in my ear while I had the tube, but this was about it.

Meniett
I tried the Meniette for one ear for some months.  I had so much hope before I started but this was nothing for me.

Carbamide/Urea
White crystals in a small plastic bag make me think about other things than medication but this is something you take with some water as soon as possible when a vertigo attack is coming.  It helps the fluid level in your ear (and of course in the entire body) to become lower.  It tastes really bad and almost made me throw up and it didn´t prevent the attack from coming.

Cortisone
When I got Menières in the other ear I took cortisone (prednisolone) on a very high dosage for a few days.  I will never take it again if I don’t have to. I got hyperactive, had a high pulse/heart beat, got a gastric catarrh so bad I fainted at work and ended up at the hospital.  And this treatment didn’t help me at all.

Cortisone injections
A rather new treatment here in Sweden is cortisone injections through the eardrum and into the middle ear.  If the tissue in the middle and inner ear is swollen the cortisone can help.  The injections are given 5 days in a row and you have to lie still on your side for about an hour.  Before the injection I had anesthesia ointment on the eardrum to make it numb.  This treatment was just a little painful, a quick pain while the doctor injected the cortisone.  I got it for both my ears with a few weeks passing between, and then we tried it once again on one ear.  I cannot say it helped much though.

Gentamicin
This is a treatment I didn’t really want to try so when my doctor recommended it I wanted to wait and think about it.  Then I became bilateral and gentamycin injection is no longer an option.  Neither is surgery.  I know they do the saccotomi shunt surgery sometimes but I’m told that many Patients who had the surgery are only helped for a short while.  When I had my worst period of illness I believe the doctors could have done what surgery or treatment they wanted if I only got rid of the vertigo!

This seems to be my story.  I’ve tried so many treatments without any success at all.  For every new treatment I’ve tried my hope has diminished.  But there are a few things I’ve tried which have made iteasier to cope with this illness:

Acupuncture
This has helped me to relax and even to take away the constant dizziness in my head.  Not for long only half an hour or so, but a very good half hour.

Chiropractic and massage
The constant dizziness makes my neck and shoulders stiff, and the stiffness in this part of the body seems to increase the dizziness.  A chiropractor has helped me to make my neck better.  A goodmassage has also helped.

Therapy/counseling/medication
First I met a counselor at the hospital who works with patients from the ENT department.  Later, I’ve seen a psychotherapist for two periods.  When I got ill again four years ago it really made me depressed.  Life was not worth living although suicide was not really an option.  The therapy has helped me to deal with being chronically ill, not being able to work, the guilt I felt of being a lousy mother and wife.  At the therapist I learned not to fight so hard against an illness you cannot win the battle with.  Now I try to walk along and follow the illness.  We haven’t “made friends” but Mr. Menière is not my enemy any more. He is more like the annoying neighbor you have to live beside.  I´ve also started medication to increase the serotonin level, with medicine also called anti depressive pills, on a low dosage.  It doesn’t make life a feast but it certainly makes it easier to deal with the hard issues in a better way than being over whelmed by the problems.

Life today is rather good. The illness has taken a lot from me but also given me something.  New experiences, new friends, new hobbies and I certainly have had to get to know myself!

**Please note that I (Wendy) have added links the treatments that Susanna tried.  The links will lead you to sites that I found giving definitions of the terms, or to studies about the treatment.

As always remember that different treatments work for different people.  We are not doctors and we aren’t telling anyone what they should do.  This series is to allow people with Meniere’s to see how others have dealt with this disease.

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7 thoughts on “Meniere’s Treatments Guest Post – Susanna

  1. Susanna,

    I really appreciate your story. I can relate to the feelings of desperation and depression and all that leads up to it. I hope time will bring you to a more comfortable and predictable place.

    I couldn’t agree more that half the battle is just accepting that this is what it is. While I was battling regular vertigo attacks, I would give them little mental “hugs”. I don’t know why, but it brought me a sense of peace and acceptance. I found I fought the disease with a new sense of purpose and calmness once I entered the stage of acceptance. Might sound counterintuitive to some.

    I wish you the best and thanks again for sharing your story.

    Angelea

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  2. Thanks Angelea for reading and commenting. Accepting being chronicly ill is hard and maybe I´ll never come to total acceptance. I like the mental hugs you give the vertigo attacks – that is a way of taking the command over the situation as I see it. You don´t fight back – you´re in charge. I´ll try to have these hugs in focus if (not when) a new spin arrives!!
    Susanna

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  3. Susanna,

    I felt I needed to chime in on something you mention in your story, counseling. I think this is a very important thing for anyone with a chronic illness. It has helped not only Wendy but me as well. It provides a “safe” place where she can vent without fear; and by allowing me to hear what she says in these sessions has helped me understand everything much better than I would have otherwise.

    – Stuart

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  4. Stuart,
    Without counselling I´m not sure where I had been today. And I´ll ask my husband where he think we should have been without it. It´s good to get an other perspective, from someone standing beside and doing his best to help. A person we never would cope without. I have thought about how it would be if I was that person instead, the one who lives with someone chronicly ill. I´m not sure I would be half as supportive as you are to Wendy and my husband to me.
    Wendy!
    This makes me think about how interesting it would be to read a guestblogg from Stuart. That would really be something to let our loved ones read!
    All the best!
    Susanna

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    • Thank you Susanna, I talked to Stuart about doing a guest post and he said he would. He said it may take a little while, but he would start working on it. I think it’s a great idea to have a caregiver’s perspective. w

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  5. Pingback: #HAWMC Day 26 – Care Page for the Newly Diagnosed with Meniere’s | Picnic with Ants

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