Tag: vertigo

Meniere’s Treatments Guest Post – Susanna

On By WendyIn Guest Post, Medical Tests, Meniere's Disease7 Comments
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.

Meniere’s Treatments Guest Post – Deb

On By WendyIn Meniere's Disease7 Comments

Deb from Faith Hope and Fighting Spirit is my Guest writer today.  Like many of us she suffered with Meniere’s for several years before she was diagnosed.  Deb is a teacher in Barrie, Ontario, Canada (1 hour north of Toronto).

This is the story of her trials with the treatments she has tried, and what is working for her.

The Meniett Device

Here is the readers digest story of my fight with Meniere’s. I have found the Meniett Device extremely helpful as a treatment, albeit, not a cure. I have tried various treatments over the years, but so far this treatment seems to work the best for me.

It is difficult to track exactly when Meniere’s first hit me but it was likely December 2001.

For 7 years I had attacks but I didn’t know what was wrong with me. Doctors thought they were vertigo migraines. It was not until 2008 that I was diagnosed with Meniere’s Disease and my Oto/ENT prescribed a low sodium diet and Serc. For over a year this helped but by the spring of 2010 I became very sick and began to miss work for weeks at a time. I am a teacher and in the fall of 2010 after a long hot summer I could not return to work. I couldn’t walk. I couldn’t even get dressed by myself or go to the washroom alone. I was desperate. I know I was depressed.

My Oto/ENT just kept giving me more and more Serc that wasn’t doing anything so I tried everything. At one point I was seeing my Oto/ENT, my family doctor, a chiropractor, a natural path, an acupuncturist, a massage therapist and an osteopath! I needed  a secretary to keep me straight with my appointments.

I was then given the opportunity through my Oto/ENT to be fitted with a ventilation tube so I could try a Meniett device. I had read about the device and wanted to try it, even though I wasn’t sure my insurance would cover the $3500.00 cost! This was on September 20th, I was not well enough to go back to school so what a Godsend this Meniett was! Miracles happen daily and I have been fortunate enough to be part of one. God heals in all sorts of ways and with me He chose the Meniett!

After using the machine just 5 days I was well enough to run again! I had missed this desperately. Three weeks after that on October 12th I was able to return to school. I was so happy to see my students and to lead a “normal” life. I hope I remember this feeling always. Illness really can be a blessing, especially when you can be so thankful for the healing in the end.

Since then I have used the machine 3-4 times a day. Each session takes about 5-7 minutes and it is small enough that I just carry it to work with me and use it on my lunch. My original tube was blocked recently but my Oto/ENT replaced it with a larger one that should last me 18 months. The procedure for getting the tube inserted takes about 5-10 minutes and is not that painful. My doctor just used a local anesthetic that burned a bit when it was put on but that’s it.

The premise behind how it works is that the air puts pressure into the inner ear which then moves the excess endolymphatic fluid to the endolymphatic sac.

You can check out more information on the Meniett and how it is used at:  http://www.meniett.com/

They will usually give you a 60 day trial period. If it doesn’t work for you, just send it back and they will not charge your credit card.

I am not entirely drug free. I still use meclizine periodically and I take Ativan at night if I am feeling extra stressed or I can feel the spins lurking in the back of my head. The really good news is that after a good fight with my insurance company it looks like they will finally pick up the cost!

I hope this helps. I wish all of you good health and strength to continue the good fight!

**Please note that I (Wendy) have added links the treatments that Deb tried.  The links will lead you to sites that I found explaining the premise behind these treatments, or to definitions of the terms.

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.

To keep up with Deb’s progress please check out her blog Faith, Hope, and Fighting Spirit.

Next Post: Meniere’s Treatments Guest Post – Susanna

Meniere’s Treatments Guest Post – Angelea

On By WendyIn Medical Tests, Meniere's Disease5 Comments

Angelea is a fellow Meniere’s Warrior and Blogger.  Visit her blog at A Day In The Life With Meniere’s to keep up with her story.

Angelea lives in San Diego, California and is a wife, mother of three, and works as a nutrition support dietitian for a home infusion company.

This is her story:

When you are miserable and living in fear of leaving your home because of recurrent vertigo, you will try almost anything to feel better and get your life back.  From the day I was first diagnosed with Meniere’s disease, this is how I have felt.  Initially, I was confident I would respond to “conservative medical management.”  The odds were in my favor if you believe the statistics that 80% of people with MM (Meniere’s) do, in fact, manage pretty well on diuretics and a low-sodium diet that includes little to no caffeine or alcohol.  Even though salt, caffeine, and alcohol in the form of a glass of red wine with dinner were the cornerstones of my otherwise healthy diet, I was up for the challenge.  Bring it on! 

Unfortunately, despite a complete overhaul in my diet that resulted in an almost ten pound weight loss, vertigo episodes lasting 8 to 12 hours continued to plague me anywhere from two to four times weekly.  During this time, my dedicated husband scoured the internet and came up with some alternative treatments for me to try.

The first alternative to my doctor’s first line of defense (diuretics and diet) was to try antivirals.  There are a few published studies on relatively large populations of MM sufferers that suggest a strong correlation between the herpes class of viruses and MM and a significant improvement in symptoms with antivirals.  My doctor was familiar with these studies, however he is not convinced of a link just yet.  Regardless, antivirals being a relatively safe class of drugs, he was agreeable to prescribe a short course of Acyclovir.  I started off following the American (Gacek, et al) study’s protocol of 800 mg 4 times a day for 3 weeks.  By the end of the first week, my symptoms seemed to greatly improve.  But the vertigo returned with a vengeance once I began tapering to 3 times a day.  At that point, I asked to increase to 5 times a day consistent with the common dosage given for other herpes infections.   Again I improved over the course of the next 2 weeks.  But my prescription ran out and my doctor was not comfortable allowing me to continue on the high doses indefinitely.  Honestly, I didn’t want to be dependent on taking pills for who knows how long and continue to live in fear every time I tried to taper to a maintenance dose.  I just wanted this nightmare to end.

The next alternative treatment was a supplement regimen promoted by a guy on-line who calls himself John of Ohio.  Apparently a retired biology teacher, he did some of his own research and claims to have gained control of his own MM symptoms by taking a plethora of dietary supplements.  His logic was, well, logical so it seemed to be worth a try. It turned out not to be for me.   First of all, I was popping pills all day.  A couple had to be taken on an empty stomach, a couple more with food.  Some were familiar vitamin supplements and others were obscure to the point that they could only be found from a small handful of on-line suppliers.  Nonetheless, I stuck with it for a couple of months.  Some followers claimed relief almost immediately, yet others didn’t notice results for months.  It all sounded really good in theory; however, I have my reservations about the supplement industry, as well as the purity and long-term safety of their products.  Time and again, private testing companies have proven that many supplements are contaminated with potentially dangerous ingredients and/or contain significantly more or less of the active ingredient than what is stated on the label.  Then there are the studies that found that Beta Carotene supplementation, for example, promotes lung cancer cell growth and folate supplementation is linked to an increased incidence of colon cancer.  Finally, if one is taking a bioactive agent in high enough doses to have a therapeutic effect on the inner ear where blood supply is low, imagine the potential effects, good or bad, on the tissues in the rest of the body.

The way I saw it at this point was that it was only my ear that had a problem, so why not localize my treatment approach?
But, at the encouragement of my husband after having had read some pretty convincing testimonials on-line, I had to exhaust one more alternative treatment: upper cervical chiropractic adjustments, aka NUCCA.  The theory here goes that the nerves between your cervical vertebrae can become compressed and this can contribute to everything from MM to MS.  Again, logically, it could be possible, especially since this is the segment of the spinal cord innervating one’s ears and eyes, among other things.  Of course there were only two NUCCA chiros in my area and neither was covered by my insurance even though I have chiropractic coverage.  So out came a boatload of money for a 3-month course of adjustments and, somewhat worrisome, x-rays.  Yes, my posture improved a bit, I think, and it was completely painless to the point that it was hard to really believe this guy was doing anything at all except laying of hands on my neck.  A nice enough (young) guy, but as I got to know him over the weeks I found him to be quite naïve and really just not very smart.  I would say it was a relatively harmless thing to have tried except for the exposure to all the unnecessary radiation and the huge hit to our credit card.  And I continued to have vertigo as bad as ever.

By this time, I was 7 months into this nightmare and I just wanted to wake up!  Back to the doctor I went and it was decided the next best course to try was intratympanic dexamethasone injections.  I got one in October with some improvement and another in November.  I made it through December and January vertigo-free and finally feeling like a normal person again.  Then the week before my son’s 9th birthday, wham!  The nightmare returned.  I went in for another series of dex injections, as well as a trial of another diuretic (hydrochlorothiazide to Neptazane and back to HCTZ).  The dex failed miserably and I developed an allergic reaction to the new diuretic.  At this point, my doctor suggested adding high doses of oral steroids to another intratympanic dex shot.  Having worked with patients on oral steroids, I was all too familiar with the nasty side effects of these potentially dangerous drugs.  Plus, I was devastated to have experienced such a wonderful period of remission followed by complete failure and misery.  I was done.  I wanted off this rollercoaster.  I wanted to move on to something that had the hope of offering permanent, or at least long-term, relief.

I had been reading about intratympanic gentamicin treatments for months by now and this treatment strategy seemed to offer the best of both worlds: it was noninvasive and potentially permanent.  I had no fear.  My life was severely limited by now and I had nothing to lose.  So on March 25th, 2010, I had my first gentamicin injection.  It was a nonevent, painless as the dex had been.  I went home and waited.  I had a couple more vertigo attacks, but about 10 days later I began feeling the telltale signs that something was happening.  My balance was very poor and I felt really weird, but the vertigo and nausea were gone!  I would say it took about 3 months to regain a pretty decent sense of balance and another month or two for my hearing to improve a bit to a new baseline.  I still felt the episodic pressure in my ear, as well as fluctuating tinnitus just as I had before with my vertigo attacks, but I could function and life went on.  I continued to work, run the kids around town, and no longer lived in fear.

My doctor was surprised I had responded after just one gent shot.  He gives a lot of them and said the average number of shots patients needed before they got relief was 2.something.  I had read, and he concurred, that the vertigo could return, usually within the first year.  And sure enough, it did.  I got 8 beautiful months of relief and then my world turned upside down once again in November, 2010.  While it was disappointing, I was not defeated.  I knew what worked and went back to the doctor for another shot two days later. Then I waited and waited and waited.  Six weeks later, I was again confined to my house and suffering long episodes of vertigo several times weekly.   This had to be one of my lowest points.  The what-ifs reared their ugly heads and I had to seriously consider surgery.  I got a second opinion at the House Ear Clinic, even though my own doctor is a world-renowned specialist in treating MM.   They had nothing particularly new or better to offer me.

At my follow-up appointment with my regular neurotologist on December 30th, I was prepared to sign on the dotted line to have surgery: either endolymphatic shunt surgery or the more invasive, but more promising, vestibular nerve section (VNS).  But my doctor was agreeable to try one more gent shot, even though my hearing had diminished quite a bit over time.  The risk of too much gent being deafness.  But this, to me, was preferable to the possibility of a failed sac surgery or to anyone poking around behind the protective barrier of my skull.

This time I waited 3 long weeks and then, success!  I have been vertigo-free since the 3rd week of January.  I still feel off-balance and have lots of little mini-spins lasting a second or two several, several times a day.  I still want to complain many days, but I can’t.  I am vertigo-free!  Hallelujah!
I don’t know what the future holds, but I am just grateful for today.

Be sure to follow Angelea’s progress on her blog A Day In The Life With Meniere’s.

What a nice day!

On By WendyIn Life, Meniere's Disease5 Comments

I had such a nice day today, I just had to share it.

My hearing is better.  No symptoms at all really!  Yay!

Today we went to the co-op first and stocked up on groceries for the week.  We came home and made burgers.  We cooked them on the grill, and then we ate outside.  It was about 80F!  So cool.

Then we went to look at cars.  For ME!  Yes, we are looking at buying me a car.  For years we’ve been a one car family, but one of the biggest reasons I don’t drive is because I’m afraid that I will get out and have an attack and won’t be able to get home.  I would just feel so much better I knew I could call Stuart to come get me if something happens and I feel like I can’t drive.

This is the car I test drove today:

2004 Volkswagen Beetle

How cool is that?  We drove it with the top off, and it was so much fun!

Not sure we’ll get this car, but it sure was fun test driving it.

Another nice thing about today…my husband has been flirting with me all day.  It’s so nice.  He so often has to be my caregiver, it’s so very nice for us a day where we are just a married couple, in love, and having fun together.

I’ve been feeling great lately.  I still have my lumbar puncture scheduled for Wednesday, I think I’ll try to do as much as I can from now until then.  That way if over doing it is what caused my last set back, it should do it again.

Tomorrow, I have another one of those Breath Tests.  On Friday when I could finally eat I had such a horrible headache I was forced to bed for hours.  I hope tomorrow’s experience is better.

Today was such a nice day.

Here we go again.

On By WendyIn Meniere's Disease1 Comment

Still can’t hear.  It’s so much worse now that the Meniere’s is in both of my ears.  Since I can’t ever hear out of my right ear when my left ear is having problems I am at a major disadvantage.  I’m trying very hard not go get frustrated, but I get so tired of saying, “What?” and “I’m sorry, but I can’t hear you.”  I have to admit I often let my frustrations out on my husband, he will talk to me and I just yell at him that I can’t hear him.  It’s not his fault, just two days ago I could hear him.  I just get so frustrated.  I’m trying to get better.

We went to the mall today to pick up some dog food from a non-profit store that we like to give business.  This mall is a good ways away from our house, but I think it’s worth.  Normally.  When we got there we decided to walk around for a while and get something to drink, do some window shopping.  I have a huge weakness for shoes and just had to look.  We are trying not to buy anything new right now, so I was just looking, however I was being mighty tempted.  I tried on a pair of shoes, really I wasn’t going to buy them, usually when I try on a pair I change my mind….and I did.  However, when I went to put the shoes back I had one of those “Oh shit, the world just moved much more than I did.” moments.  I immediately took some Valium and Phenergan and decided it was time to leave.  I did start to feel better on the way home but was in no way stable.

After we got home I hit the couch, and I’m still here.  I went to the bathroom and things went a little merry go roundish again.  So, I took some more meds and just had a Phenergan suppository too.  I’ve also had a horrible headache today.  I took a Maxalt (a migraine abortive) a little while ago, it eased it but didn’t take it away.  I’m afraid to take a pain pill, I’m afraid I’ll get dizzy since I’ve already taken 2 Valium.

I thought about taking the Diamox, the medication Dr. Gray gave me if my pressure went too high, but last time I took that it made things worse and I had horrible side effects from it.  I don’t want that to happen again.

Thank you all for the encouragement.  I do want to let you all know, I’m really not that stressed about this.  I’m not afraid of an attack coming on.  If it does it does.  I am afraid I’ve gone through all of this for nothing.  I am afraid I will have to suffer through the attacks and feeling awful for months before they will do anything else.  I wonder sometimes if I shouldn’t have just gone ahead and gotten the surgery on my left ear like I did my right.  At least it helped the vertigo.  But then I think.  How else would they learn if not for people like me, taking the chance to risk a different type of treatment?  It may not work for me, but it has worked for others.  And who knows it is still too early to tell, it may work for me too, it may just take a bit more tweaking.

On top of this I think my kidney stone my be moving.  My left side is hurting, just where the doctor told me it would, and I keep feeling like I’m going to explode if I don’t pee, but when I go in there I just get a few drops.  Hopefully, it will just settle back down and won’t decide to come out right now.  I really don’t need to deal with that right now.

Well, I’m really tired now and think I will rest some more.  Perhaps even just go to sleep.

I mainly just wanted to vent a little, and let everyone know I’m OK.   Thank you all for all the well wishes.

(My thinking is a little muddled right now, so I apologize if this post isn’t up to par.  Please forgive grammatical and spelling errors, or rambling.

Feeling Better

On By WendyIn Medical Tests, Meniere's Disease6 Comments

 

Happy as a Monkey (I did this painting for a friend's nursery.)

It’s been 12 days since the Cerebral Spinal Fluid Patches, and I am feeling better.

 

I still feel better in the mornings, and then fade in the afternoon.  By the evening I often just feel a bit icky.  Kind of off kilter.  (you know, a little off-balance, not much, a little nauseous…)  However, over all, I do feel much better as far as the Meniere’s is concerned.  Not so much with my GI stuff, and my hip pain, but that is a story for another day.

Stuart talked to Dr. Gray a couple of days ago and he told her how I felt so much better in the mornings, then as the day goes on I start to feel worse again.  She said that is a sign of low pressure.  She suggested I come in and have her patch the last leak.  They didn’t patch them all because they were afraid they would spike my pressure, and/or cause it to raise and stay too high.  We decided to wait a few more days to see how I’m doing.  I’m thinking I should probably stop taking Topamax all together (after discussing it with Dr. Gray) before I go in to have the last patch.  Topamax is used to help control migraines, and it also treats bi-polar disorder, however, it can also be used to lower your spinal fluid pressure.  Since I’m taking a small dose every day, I think it’d probably be a good idea to get off of it if I already have low pressure.   : )  Then we will see if I still need to go in for the last patch.

How much better do I feel?

  • I haven’t taken any Valium or Phenergan in days.
  • The dizziness and feeling of being off-balance (disequilibrium) is minimized.  In the mornings I don’t feel it at all.
  • No headaches.  (well, I had a little one today, but I think it’s because I didn’t sleep well last night.  No migraines though!!)
  • Hearing is staying pretty steady in my left ear, I can hear pretty good out of it, but some frequencies are dull.  My right ear is still pretty gone, but in the evenings the tinnitus is much worse in that ear.

So what do you think?  Sounding good so far?

I learned from my last experience with the blood patch that I don’t want to jump the gun and think I’m ok before I have a long while feeling that way.  I’ve been conversing with another patient of Dr. Kaylie and Dr. Gray.  She has high pressure (and she doesn’t have Meniere’s she has another vestibular disorder).  She felt “normal” for over 2 months then the meds stopped working and her symptoms started to return.  It was so hard for me after just 10 days of feeling normal to go back to having the symptoms again, I can’t imagine how she must have felt after 2 months!  She is still being treated, and there is hope she will get back to that “normal” state too.  Just as we are hoping I will.

This time I’m looking at things differently.  Before, I looked at this as a possible cure.  I don’t know if I want to think of it that way.  That would mean that it couldn’t come back, and we have seen that it can.  I have finally come to accept this disease as a part of me, that I have to live with for the rest of my life.  I will always look for the best way to deal with it, and right now I think this treatment is it, for me.  However, I know that the Meniere’s is still there.  If something gets off-balance again, it will all come back.  One of my lovely readers advised me to not fight it so hard, but walk with this disease and accept it.  I’ve taken her advice.  It will never be my friend, but it will always be a part of me, and I can deal with that (at least I’m learning to).  It has made things much easier since I started thinking this way.

Another thing I’ve been thinking about a lot lately.   Friends.   I feel like I’ve lost touch with so many of my friends since I started getting really sick.  (I say really sick, because I’ve been sick for a long time, but I was functional.  This past 2 years have been much harder.)  I was taking that very hard.  But I really needed to look at it and realize, that most of it had nothing to do with me.  Most of my friends also had children over the past 2 years.  I can’t drive, and their lives are so busy with their new families they just don’t have the time to make for me.  And that’s ok.  I’m still here.  You know, even if it is because they don’t want to be around a sick person, that’s ok too.  I’m not going to take it personally.

I decided I’ve had some really great friends in my past, and I love them and want the best for them.  We may not be in touch as much right now, that’s ok.  We may be more in touch in the future and that would be great, if not, then it wasn’t meant to be.  I will still love and cherish the time we spent together.  I know there will be new people in my life, and in theirs.  We grow, sometimes we grow apart, sometimes we grow together.   Sometimes we simply grow up.  I think I’m doing a lot of that right now.  (at 47, you would think I was all grown up….but I’m learning new things all the time, especially about myself.  And heck, I don’t think I’ll ever see myself as a “grown-up”. *shudder*)

8 Days after…still waiting…

On By WendyIn Medical Tests, Meniere's Disease3 Comments
image courtesy of http://www.artbywicks.com

I know I haven’t been posting as much as I usually do, and I haven’t been talking about my progress after my Cerebral Spinal Fluid patches, but I just haven’t felt all that different.

I wake up in the morning, and most mornings I feel pretty good.  (that’s not unusual)  I continue to feel a bit off balanced all the time.  As the day goes on I seem to start feeling a bit worse.  I don’t really know how to explain it.  It’s kind of like I’ve always felt, but different.  My head feels full, and I feel like if I moved my head too much I’d barf.  I feel slightly nauseous most of the time.  If I get hot, it gets so much worse.  I’m just not sure what it all means.  Stuart tells Dr. Gray and she seems content.  She says it’s good that I’m not having headaches.  I’m happy about that too.   I sure do wish I would see more improvement.

I do feel like my hearing is a bit better in my left ear, but I still have trouble hearing certain frequencies.  I don’t realize just how much I rely on closed captioning until I don’t have it.

So, my progress so far…not too much.  But I haven’t had any full blown Vertigo attacks!!  That says a lot.  One time I felt like I might start having one, I took a pill to reduce my pressure (like Dr. Gray advised) I was still having symptoms 30 mins later, so I took another one…and shortly afterward I couldn’t stand it any longer and took a Valium and Phenergan.  I started feeling better, but I’m not sure what caused it.

I had a Gastrointestinal CT scan on Thursday.  It was not a fun experience, but it wasn’t the worst I’ve had.  I think I had a reaction to the Contrast they had me drink before the scan.  I had horrible diarrhea starting before I started the 3rd cup.  (you have to drink 3 cups of this stuff, they tell you that, but they don’t tell you the cups are 20 oz.).  Well, they almost had a mess to clean off of their expensive machine.

The other bad thing about the test.  They were also supposed to put in an intravenous dye.  I told the nurse on the phone the day before that it is very hard to find my veins.   So she took me back in the very cold CT room and tried to start and IV, she looked at my arms and said, “Oh, yeah, you told me this would be a challenge.”  I said, “Yeah, I don’t know why people never seem to take me seriously.”  She said she did, she just forgot.  She then said she could see any veins, and she couldn’t even feel anything.  I said, well, it’s very cold in here, they had to use a hot pack last week to help out.  Well they didn’t have that.

So after 5 times of her trying to find a vein, and each time she would say something like, “I don’t feel confident about this, but I’m going to try.”  I felt that was not the thing to say to a patient.  She was very concerned for my comfort, but she was not confident in her job.  One time when she said that and was about to stick me (try number 4 I believe) I turned to her and said, “Honey, You need to get some confidence, you have to believe you are going to do this or you will never be able to do it.  Take control, tell that vein who is boss!  And just do it!  Don’t worry so much about hurting me, I’ve had much worse.”  She just said, “You are so funny.”

OK, well, I do believe, if you believe you are going to fail, you will fail.  It was obvious she believed she was not going to be able to do this and she never did.  Finally, she had to call the radiologist and tell him that she couldn’t do it, he said fine.  We just wouldn’t have that part, if they needed it later, they’d try again.  I said, “with someone else giving me the IV.”  : )

Luckily, it doesn’t seem to be a need for them to do that part of the scan.  Yay!

The results?  I have a Kidney stone!  Well, that was a surprise.  It’s small and not in a place where it’s causing any harm right now, but still, A Kidney Stone…crap.  I just wouldn’t think it possible with as much water as I drink.  Oh well.

The doctor also told me that I have a fatty liver, I don’t have liver disease though because my enzymes aren’t high.  So it’s just fat there because I’m over weight.  I told her, “Well that doesn’t surprise me since I gained 40 pounds in about 2 months, that is one of the reasons I came to see you.”  She said, “A low-fat diet….yadda, yadda….”  I told her that is what I was doing before all this started…she said I still needed to do the breath test to determine if I’m lactose or fructose intolerant.  And then come in for another office visit to reassess.   I told her I’m working with a nutritionist.  She was great!  (I thought, then why didn’t you suggest it?)  Can you tell, I’m not impressed by this digestive health office?

She just keeps telling me to take fiber.  Well, that didn’t work.  I tried.

I’m glad my nutritionist doesn’t believe in a one size fits all philosophy.  She is working with me to figure out the best diet for me, and how to get me healthier.  One step at a time.   Already working with her, my diarrhea has gotten better.  I’m still having it sometimes, but not every day!  Isn’t that exciting??

I’m still hopeful that the patches will work.  Again, one step at a time.

Tomorrow is my hubby’s birthday.  I gave him a gift certificate for a 90 minute massage.  He had it yesterday.  It was so nice to be able to pamper him for a change.  And I’m going to watch the Super Bowl with him.  (I’m not a sports person)  We’ll have fun.  Gluten Free pizza.  Possibly wings. Oh, and Ice Cream from a local Dairy.  (I won’t be having the ice cream, I’m not eating sugar right now, but it’s a great treat for Stuart. Perhaps I’ll put a candle in it.)

Please Don’t Judge Me

On By WendyIn Disability, Meniere's Disease6 Comments

This is something I read a long time ago that I have shared with friends and it seemed to help some understand this illness.  I don’t know who wrote it, I wish I did, I’d love to thank her or him.   (I recently found out…see comments, 9-5-2012….that Tina McDonald is the author of this essay….Thank you Tina for speaking for us!)

Please Don’t Judge Me

Author Unknown

Life with Meniere’s Disease : Before you judge me on one of my good days, you need to understand what one of my bad days is like.

Tinnitus – imagine having a headache caused by a fire alarm ringing or a bee buzzing in your ear continually for a long period of time. You can’t hear anything but that fire alarm or bee – It drowns everything else out.

Vertigo – Now imagine yourself as really drunk or with the flu at the same time as the fire alarm is going off. Now imagine that with these two things, you’d be dumb enough to get on one of the super roller coasters that does loop-de-loops or the amusement park rides that spin in two different directions at the same time. I’m not that dumb, but unfortunately I have no choice in feeling these sensations.

During one of these vertigo attacks that can last from several minutes to several hours if not days. I can’t keep food or water down, I can’t walk, and in order to get out of bed to go to the bathroom, I have to crawl like a baby on my hands and knees. The movement makes me so ill, if I’m able to crawl back to bed, I’m covered in sweat from exhaustion. Otherwise, I keep a pillow and a blanket at the bottom of a linen closet in the bathroom so that I can pass out lying across the bathroom floor. I end up sleeping for days after one of these attacks, only getting out of bed to go to the bathroom or to get something to drink, if I think I can keep it down. I have to call my family to see what day it is when I wake up. That is, if I can hear.

You see, this disease while playing havoc with your balance and equilibrium, also reeks havoc with your hearing. It wouldn’t be so bad if the hearing loss was constant and predictable. But no, one day I can hear conversation fairly OK, and the next I can be virtually deaf, then the next day I can hear again. The hearing loss can fluctuate, but is usually progressive, and many with the disease end up severely hard-of-hearing or deaf.

Even on a daily basis, your mind is so confused by the signals it’s getting from your ears that your balance sucks. You run into things constantly because you can’t balance well enough to avoid walking into things, or your mind is telling you the object is a couple of inches from where it really is. I don’t know whether to laugh or cry when someone teases me about being such a klutz. I could make the Keystone Cops look graceful.

I also have days that my coordination just doesn’t seem to be together. I’m carrying something, and all of a sudden I drop it because my brain seems confused as to whether my hand is really attached to my body. I sometimes miss a step and fall because of the feeling that my legs are not quite part of me and I have to focus on them to realize they are there. Apparently this happens because the part of your brain that recognizes parts of your body as belonging to you is the parietal brain lobe and it sits right above your ear, so if the nerves around your ear are inflamed, it can press on this part of the brain, or send the wrong signals to it (I’m not quite sure which), and you can lose coordination.

Ironically, the few high frequencies I don’t seem to have a hearing loss in can sound extremely loud, unbearably so. When a baby cries, an alarm goes off, or a microphone gives off feedback, I’d be willing to climb up a wall to get away if I thought I could make it. This symptom is called recruitment.

The disease also plays tricks on your vision. For some strange reason, the nerve that goes from your inner ear to your brain also controls some of your eye movement. Your eyes can twitch or bounce constantly, making focusing on objects, much less print, extremely difficult at times. Your eyes tend not to be able to “track” movement at the same speed, giving you double vision, and a bad headache.

You can get confused easily and your memory and concentration aren’t reliable. It’s what some people with the disease refer to as “brain fog”. Many of them originally were afraid that they may have a brain tumor or Alzheimer’s because it can sometimes gets so bad. Finally they find either a doctor whose very knowledgeable regarding the symptoms, or they happen to ask someone else with the disease, and find that this too is a symptom of this blasted disease.

Now try to imagine living with this disease never knowing when one of these periods of tinnitus, vertigo, hearing loss, double vision, lack of coordination, recruitment, disequilibrium, or “brain fog” is going to hit, or how bad it will be. At least with being drunk or riding an amusement park ride, you know what’s causing it, and you can make the choice not to do it again. With this disease, there’s very little warning if any for these attacks, you don’t know what’s causing it, and there’s no cure – only devices, surgeries, and some medications that can somewhat help alleviate the symptoms. And some of the surgeries are so radical, you think they came from a horror movie about a mad doctor. My ENT surgeon won’t even perform any more surgery on my left side, since I have the disease in both ears. He’s concerned about what would happen if my right side became worse than what my left side is now.

Understandably, anxiety and depression seem to go hand-in-hand with Meniere’s for many sufferers. We often ask how much worse can this disease get? For some strange reason, doctors aren’t very willing to give out worst case scenarios.

Now decide if you think I’d be able to do the same things you do on as punctual and regular schedule. For me, there’s no way. I’m being up front about my limitations. I try the best I can at living up to my full potential. Could you if you were in my shoes? They think now that Van Gogh suffered from this disease, and he cut off his own ear trying to escape it.

Yet on my not-so-bad days I may look like a totally healthy, able-bodied person. You ask me “why can’t you bend down – pick it up – lift it – drive – get a job – walk without a cane” It’s because I know these things can either bring on an attack – I couldn’t do them on a regular schedule because of the symptoms – or if I did do them, I could put myself and others in jeopardy if I should have an attack. You have to realize that with my friendship, love, dedication, and loyalty comes the fact that I can’t decide when I’m going to have a bad day, and the more stress I’m under, the more likely I will have a bad day.

So, please don’t judge me unless you’ve been in my shoes.”

(Of course, part of this is personal to this person’s situation, but it hits pretty darn close to mine.  I don’t walk with a cane, because I don’t feel like it helps.  I do find that a walker helps when I get dizzy.  It stays steady.  A cane just falls with me.  And of course, you all know that I do have some hope that things are going to get better because of fixing the CSF imbalance.  However,  It doesn’t look as if my right ear will regain it’s hearing and it looks like I will always have tinnitus in that ear too.  I’ll be very lucky if that’s the only symptoms that remain.)

I hope this little essay helps you in some way.  If you are a friend or family member of mine, perhaps it will help you understand me a little more.  If you are a fellow sufferer, perhaps it will help you in explaining things to others.

Recovering..a little slower this time.

On By WendyIn Meniere's Disease2 Comments

I was starting to get a little worried because I have been having some dizzy spells, and my hearing isn’t up to par.  Plus, I’m just really wiped out.

I knew Dr. Gray said to expect gradual improvements from these patches, instead of the instant improvement I had with the first patches, but I didn’t know how gradual.  Luckily, Dr. Gray called yesterday to check on me and she told Stuart it would take 7-10 days before I saw the same improvement I saw with the first patches.  (I thought it was kind of ironic that it may take 10 days before I see improvement this time, and last time I only had improvement for 10 days.)  I know it’s just coincidence , but I still thought it was kind of ironic.

So for now, still just resting.  Hardly any pain at all today, I feel like I’ve been getting over a pulled muscle.  Oh, and that cold I felt coming on…well, it doesn’t seem to be there any more.  I’ve been sniffling a little, and I’m very tired (but that could just be recovery, I think), that’s really it.

Yesterday I was so tired I got up around 10 or 10:30am, Stuart made me a lovely breakfast, and I was so tired that I laid down again by 12:30pm and didn’t wake up until 5pm!  I completely missed the only warm day we’ve had.

Stuart has been pampering me.  He’s been taking care of every meal.  Helping me with my every need, or want.  And we’ve been having the best time in the evening doing crossword puzzles.

Tonight, spaghetti and meatballs.  Yum.

Puncture Tomorrow – Cold Today

On By WendyIn Medical Tests, Meniere's Disease6 Comments
A Zen Moment. (a commissioned painting by Wendy Holcombe)

Tomorrow I go in to see Dr. Gray again for another lumbar puncture and possibly having some spinal fluid leaks patched.  They called today and moved my appointment up one hour so my lumbar puncture is at 11am tomorrow instead of at noon.  I need to be there at 10:30am.  Yay, that means I will be able to eat sooner!

Today, I woke up with a cold.  It’s not bad yet, a slight sore throat, nose is running, don’t want to stay awake, head hurts, all brain foggy, achy all over…you know.  I’m a little worried about tomorrow though.  You have to be very still on the table when you get a lumbar puncture (after all, they are inserting a needle between 2 of your lumbar vertebra), what if I sneeze?  Don’t know why I’m worried about that, I’ve only sneezed twice today.

I’m glad I have the appointment tomorrow.  I’m really ready to see if we can’t get this figured out, but I am a bit nervous about having a cold.  Even if I don’t sneeze or have the need to move, I am not going to be comfortable on that table, after all the table is hard and I already ache all over.  However, I do want you all to know that a lumbar puncture is not like it used to be, they do not hurt.  The only pain I really feel is the pain killer they inject first and it’s just a little sting.  Then I feel a little pressure.  But it’s not scary, and it doesn’t hurt.  So no worries.  I’m just a little apprehensive because I don’t feel good.

I will have to find a “Zen Moment” to keep myself calm and still.  (actually, I just didn’t have a perfect picture for this post, so I thought I would shamelessly post one of my own paintings.  *smile*)

I may be a tiny bit worried about having a cold during the procedure, but really, I’m mostly excited to get this over with.  (I really hope they are planning on doing patches tomorrow and not just doing a lumbar puncture.  Truthfully, I just don’t know.)