Meaningful Monday: Pema Chödrön


photo by Lorraine

Wendy is too busy with all the wonderous changes in her life to present her usual Mindfulness Monday post at the moment. So, I am stepping in with a guest post for her.

I have always found great wisdom, humour and compassion in the words of  Pema Chödrön. She is member of/teacher at a Shambhala Buddist community – Gampo Abbey – in Cape Breton, Nova Scotia which gives her words a special resonance with me. My paternal roots, and extended chunks of my adult life were spent in the Maritimes. No better spot for meditation, retreat, and restoration. I just returned from the South Shore of Nova Scotia. My first visit “home” in 7 years; a truly transformative experience.

So in honour of Wendy and Nova Scotia, I present Meaningful Monday as a guest host for Wendy’s wonderful Mindfulness Mondays. All quotes are from Pema Chödrön.


“When there’s a big disappointment, we don’t know if that’s the end of the story. It may be just the beginning of a great adventure.”

“Each moment is an opportunity to make a fresh start.”

“Every situation is a passing memory.”


Monday Quotes – Gifts


Greetings! I am filling in for Wendy this Monday, and as it is my birthday, I thought I would use quotes about gifts. Not just the tangible, wrapped in fancy paper with ribbon and bow. But the intangible, the ephemeral, the ethereal gifts we can give ourselves every day.

“This life is your gift to yourself…Open it!” (anon)

“The greatest gift you can give yourself is a little bit of your own attention.” (Anthony J. D’Angelo)

“Every day, once a day, give yourself a present. Don’t plan it. Don’t wait for it. Just let it happen.” (Agent Dale Cooper, Twin Peaks)

image: Lorraine 2017. Please don’t use without permission. Thanks.



Today I’d like to introduce Lorraine of My Frilly Freudian Slip.  Lorraine is a good friend of mine and the author of beautiful poetry and prose.  You will find her writings at

Lorraine is fighting Bipolar I and severe anxiety.  They can’t find medications that work for her.  Following you will read a first hand account of what it is like to live with “Panxiety”.

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photo by Lorraine of My Frilly Freudian Slip

“Pounding heart. Constricted throat. Knotted stomach. Dread washes over me. A panxiety attack.

Coming, unbidden, from some where inside my mind; spilling into my consciousness and flooding my body with anxiousness.

Breathe in through nose to count of ten, fill lungs, feel belly lift. Hold. Breath out slowly to ten.

Drift – visualize place of calm. Walking on beach, tide tickling toes. Finding beach treasures: sea glass, sand dollar. Smell sea tang. Feel breeze against skin.

But the panxiety is stronger – can’t focus; can’t concentrate. Pace. Half finished tasks lay scattered around the house – stopped in mid-flow. Forgotten. Pace.

Distract. Words on page, coloured pencil on paper. But, hands and mind shake.”

Daily, I deal with panxiety – a panicky anxiety attack – lasting minutes or hours. Sometimes the dread follows, flows all day. Few solutions to the foreboding; apprehension. Becomes so hard to concentrate that writing, my usual distraction from mental and physical pain, is almost impossible. I lose words; sentences fly off into the ether.

There are times I can force myself to lay still. To tell myself one of my “head stories.” Perhaps to drift off to sleep for awhile. This doesn’t mean I stay under long, nor that I wake calm. But when I can “nap,” my emotional and physical self gets a break from the relentless panxiety.

I have to confess turning to medication more than meditation when the attacks are furious and frequent. Always haunted by anxiety, these spells have increased in number and severity. Linked to a series of traumas, mental collapse and going untreated for several years afterwards.

I am on the bipolar 2 spectrum with chronic depression, rapid cycling, and bouts of hypo-mania manifesting in over indulgence and obsession. My bipolar isn’t responding well to medication; I am mostly teetering on the edge of instability, often falling all the way in.

Depression is my background music. Even when the volume is turned up, I can become agitated and anxious. As my depression can not be treated with anti-depressants (they don’t work), it is hard to level my mood. These swings are often accompanied by panxiety.

My anxiety has never been fully addressed. The medication I am given is not in a sufficient dose to stop the attack completely. And, I take nothing that addresses it on a daily, 24 hours basis. I seek to gain control of these attacks by other means than Ativan or Klonopin. However, often panxiety, like depression, wins. Doesn’t mean I stop fighting – I just have to do battle harder and stronger the next time.

Seeing a therapist has given me an outlet; a safe space to talk about how I feel. A person who helps me explore my mental health issues including honouring and acknowledging the traumas underlying the escalation in my panxiety attacks. Therapy can be the life-line that grounds me while I do battle. A reprieve to polish my armour.


Are you a Mary or a Debbie?

Today I’m happy to introduce a new friend, Kim, from her blog, I Tripped Over a Stone.  She is an amazing writer; I am so pleased she decided to write a little post for us.  Please jump over to her blog and check her out, you’ll be so glad you did.  

Hello my name is Kim. Wendy asked me to scoot over here from my blog and do a guest post for her. I happily accepted. You see, I consider Wendy a friend. We are similar in many ways, besides having invisible illnesses, we have the same kind of humor. I have no doubt we will one day meet in person.

I have Fibromyalgia Syndrome, Wendy has Meniere’s Disease. These are classified as invisible illnesses and both are chronic conditions. Neither is really a great one to have. Would you want want vertigo, inner issues and migraines or would you pick constant pain, difficulty sleeping and cognitive difficulties? Choose. Yes, choose right now! Fibromyalgia Syndrome or Meniere’s Disease?

Now that you have picked your illness, how would you handle this new, life altering, invisible illness? Would YOUR life be over? The answer is yes. Your life, as you know it, will be over. You will have to say goodbye to the old you and hello to this new person who feels like crap most of the time and is a shell of who you worked so hard to become. You will probably lose your job, most of your friends, and some of your family members. Since your illness is invisible, you will be deemed unreliable even though its your health that’s unreliable, not you. You will be scoffed at for being on any form of assistance and called a liar because you do not look sick. Welcome to your new life.
Now you get to choose again! Are you going to be a Debbie Downer or a  Little Miss Mary Sunshine? People usually pick one or the other. Debbie and her self-defeating behavior; why try when nothing will change, there is nothing left for me in this life, I am of no use. Now Little Miss Mary Sunshine knows everything and it is making a brand new life, finding the right doctors, support groups, and will forge ahead! These are the personas we sometimes show others. In reality, we are sick and tired of being sick and tired. We just want the pain, the vertigo, the migraine…to end. A cure would be great! Until then, we take our medication. Sometimes we will go to extremes and have surgical procedures, with no guarantee of a positive outcome. And we read everything; news of every new pill, treatment, therapy, hoping we will stumble upon our way out of this illness. So who is the persona you show to the outside world, Debbie or Mary?


Ok, you can be yourself again. I am am not very found of Debbie or Mary but in a pinch I will become one or the other. I’m never quite certain who I will pick, it depends on the circumstance. It was not fair of me to expect you  to choose either. But life is not always fair!

In closing, Wendy and I will continue on our individual health journeys with a little help from each other and you! Being able to tell our stories and allow people to see us is quite terrifying at times. But somehow our paths have led us to this place and we are so very glad it did. We have been given a gift! A place to share our lives and the ability to meet such wonderful and endearing readers of our posts.

I thank you, Wendy. I enjoyed being your guest today.


Visit me at I Tripped Over a Stone.

Share Your Story – Nechama Sklar

I’m proud to present to first contributor to Share Your Story.  Nechama Sklar is a chronic illness warrior and writes at The Life You Gave Me.  After her story is a small bio about her.  I encourage you to jump over and check out this young woman’s blog.  I’m sure you will become a follower just like I am.

I am Nechama and I have a chronic disorder known as MCAS, mast cell activation syndrome. Basically, my cells are having way too much fun done, treating many things that should be harmless as dangerous invaders.

When I am exposed to one of those triggers, my body desperately tries to get rid of it, any way it can. It usually doesn’t go for the typical reactions. Coughing fights, muscle spasms, flushing, and chest tightness are more its style. On some occasions those tiny little cells that are supposed to protect me even send me into anaphylaxis, a life-threatening allergic reaction that can kill if not treated properly. And for some reason no one understands, my spasms can get so bad I cannot eat or drink.

Because my body is so busy trying to get rid of all the false threats, it doesn’t have time or cells left to deal with the serious things like infections. The way my doctor explained it to me, it’s like the police officer who is so focused on stopping the old lady from jaywalking that he misses the robber robbing the bank across the street.

My severe immunodeficiency means I pretty much never go more than a few days without an infection. And not just strep or sinus infections – though I get those too – all my infections seems to spread throughout my body, and I’ve gotten some crazy infections that required weeks of antibiotics, including an infection in my heart that landed me in the hospital for four weeks.

I also have some other disorders, like GERD (acid reflux), asthma and lots of other symptoms no one can make heads or tails of. So now you know you know a little bit about me.  

How do I keep going every day? I tell myself one crucial message I think anyone who a chronic illness or any kind of hardship needs to hear at least once a day: even if I were to fall a hundred times in one day, I would still get up. It’s a line from Rabbi Nachman of Breslov.

Because no matter how hard our lives are, no matter how many times life throws us to the floor, we stand everything to gain by getting up again. I have a strong support system that i made to fall back on at times like these. My support system is my family, my friends, my blog, my journal, groups on social media, mentors.

They have taught me that you can not choose your circumstances – only how you respond to them.You cannot choose your battles, you can choose how you fight them. And that keeps me going – knowing that I choose to take control over the one area where I have control – my reactions to circumstances.

You see, I used to believe I was a victim. But I’ve learned that I am a handpicked warrior.I have learned just how strong i can be when put to the test. I have learned that i can fight, fight to the death. I have learned that even though this illness has taken so much from me, it has given me strength  to endure – well – anything really.

Now, don’t get me wrong. How many times have I cried? How many times have I wanted to put my hands up in defeat and say, “I can’t any longer”? How many times have I told God that I am not strong enough, that I can’t take it anymore?

Many, many times. There have been days where I was sure that I would just break. Days where I really did break. Those were the worst times in my life, days where I felt I had no one to turn to and nowhere to run. So I cried. And I moped. And some days I just stayed in bed and watched movies.

There was one time when I was in-patient in the hospital. The hospital couldn’t figure out why I couldn’t eat, so they thought I had made it all up. They came into my room and told me I had an eating disorder and that they would send me to an eating disorder clinic for a few months, however long it took, until I would “let myself eat again.”

It was the most awful time in my life. Worse than the times I was going into anaphylaxis every three days. Worse than the time when they told me I had a heart infection and could go into septic shock at any time. Because there is no place lonelier on earth than when people don’t believe you.

After the hospital told me that, I went completely mute. I refused to speak to the doctors who could make such an awful, distorted accusation. My family and I were horrified at the claims. There was nothing in the world I wanted more than to eat! But my body just would not let me.

I just cried and cried into my prayer book. I cried until the pages were soaked. I turned to G~d and said, “How could you do this to me? I have no one left who believes in me. No one left who cares about the truth. No one but You. You carry me, and you hold me because I have nothing but rocks to walk on.”

And He did. The hospital sent in the head of the psych team to get me to talk, and when I saw he was listening, we had a good talk, and he believed me. He gave me an antispasmodic medicine and within half an hour, I was eating. (So much for the eating disorder claims.)

I quickly learned that there was a team of doctors from a different hospital that had believed me all along. Many of them were certain that I did not have an eating disorder.
Not long after came the Jewish holiday of Passover. It is the time were need celebrate our miraculous exodus from our bondage in a orthodox Jew, me and my family and the many other religious families in the hospital celebrated.

Never had I felt more free. I knew then, that miracles do happen. ~and no matter how tough it seems~ we can all have miracles~ if we believe.

Is my journey over? Not by a long shot. My cells and me fight every day. The flares never seem to end and there always seems to be more problems than solutions.

But deep down, whenever I feel like giving up, I know that all hope is not lost.

Another thing that has really been transformative for me is an incredible idea that I hear in a shiur by rabbi yy jacobson  that i have carried in my heart. He says that challenges are Hashem’s way of giving some of himself to us, connecting to us in the deepest way. When he draws us close, it is too much for us fragile humans.  We shatter from being so close. That is the pain of yissurim .

So be strong. And hold on tight to Hashem. Our challenges are not an act of torture, they are an act of love. An act of being brought close to Hashem.

If you believe in yourself, in your loved ones, in G~d, you just better believe it~ there are miracles. And they come to those who stay strong and believe.


I’m a 17-year-old teen ultra-orthodox Jew who lives in Brooklyn, NY.  I have MCAS , or mast cell activation syndrome- an allergic disorder that makes me allergic to- well, just about everything.

I have a primary immunodeficiency – a very long word that basically means I am also sick with one kind of infection or another.

I also have asthma and some form of autonomic dysfunction we are working on a diagnosis for.

I started my blog at a really low point in my life. I was in the hospital, physically unable to eat or drink. I would have given anything to eat or drink just one drop then.But the doctors in the hospital told me it was anxiety and were going to send me to an eating disorder clinic. I felt totally alone. I needed to share my feelings. I needed someone to hear me. And so, i let out my feelings to the world wide web. Thankfully, i got out of there safely, eating and drinking and not another word about eating disorders. Since then, my vision for my blog has expanded to include spreading awareness for all kinds of chronic disorders and providing support, coping skills and health tips for others with chronic illness.

I also run 2 online groups on facebook for those with chronic illness:teen mast cell warriors– for support, advice and encouragement for others teens and tweens fighting with a mast cell disease and let’s stay positive with chronic illness – a group with positivity challenges and quotes for staying happy with chronic illness.

Share Your Story


Everyone has a story, I want to hear yours.

I’m opening my blog to anyone who wants a place to tell their story.  If you have a blog or not you are welcome to come here and share.

I want to hear what brought you to the point you are now.  What has your chronic illness has taught you?  What do you do to handle living with a chronic illness?  What is the story behind your illness?  How were you diagnosed?  Do you care of a loved one with a chronic illness?  I’d love to hear your story.  What’s your story??  I know you have one.

If you are interested just go to the About Me – Contact Me tab at the top of this page and drop me a line.

I look forward to hearing from you!!

** no solicitations will be allowed.  I reserve the right to reject any submission.  I hope you understand.

Don’t Say….

Allison at Taking Life For a Spin posted a wonderful list of things you shouldn’t say to someone with chronic health issues.

I liked it so much I asked her if I could post it on my blog, luckily she said yes.

Don’t say…

Please think twice before you say these things to me

(or to anyone with a chronic health problem):

 First, before you read this list, know that if we talk regularly, you have probably said at least one of these things to me before…and that you’ll probably say them to me even after reading this list. It is ok. I love you anyway…and I know that you say these things out of love. I just want you to know why you get those awkward responses from me when you do say them…  ;-)

  1.  But you look good. I know you mean this in a good way, but just because you can’t see my illness doesn’t make it is any less real. Complement my hair or outfit or something, I’d like that. I guess it is the “but” in front of “you look good” that makes that feels like you are being dismissive of my experience somehow.
  2. You sound (or act) like you feel better today. Yes, even when I feel awful, there are times that I laugh and smile and enjoy myself. When you tell me this though, I never know how to react. I often am not feeling any better, so then I have to explain that. Maybe just tell me that it is nice to hear me laugh. Or maybe just let me enjoy the moment.
  3.  You should be glad you don’t have to (work, be out in this heat, listen to that lecture, etc). No, I’m not glad. Trust me, I’d rather be healthy and having to put up with the everyday annoyances of life than going through this.
  4. I wish I could have a few days to stay at home. Sure you do. When I’m healthy and running myself into the ground, I do too. I often wish for a few days off. However, I’d never wish for this! What I’m going through is not a vacation. Don’t wish for it.
  5. You must be so bored.  Nope. Boredom is when you have energy to spend and can’t find anything interesting to spend it on. I can’t remember the last time I was bored. I’m too busy trying to figure out how to get to the bathroom and back to be bored. Every bit of energy that I have is going into surviving my day. I’m not sitting here wishing for ways to entertain myself.
  6. This is ridiculous. You should (get a different doctor, try a different medication, etc). There must be (someone/something) that would help. Careful here. I share your frustration, and we all want answers. Casually telling me that I should get a different doctor or try a new medication sometimes feels to me that you don’t think I’m doing enough to get better. Do you know how many doctors, medications, supplements, and alternative treatments I have tried? If you don’t, then maybe don’t say this to me. I’m certainly open to new ideas – just talk with me long enough to get an understanding of what I have tried before you tell me what I should do.
  7. You should see House. I’ve heard this 300 times. He isn’t real. Trust me; I’m seeing every doctor that I think can help me.
  8. You’re at (work, school, etc) or having friends over, you must feel better! Not necessarily. On good days, I can medicate and push myself through some things. You aren’t with me an hour later when the medication runs out or when I crash. I know you are looking for any sign that I am feeling better. Trust me, when I feel better, you will know. I won’t keep it a secret.
  9. Just think positively and it will go away. First of all, you saying this to me suggests that I’m not thinking positively. I actually think that, emotionally, I’ve been handling this pretty well. I’m also very aware of the “mind-behavior-body” connection. Sure, stress makes everything worse and positive thinking can help. However, don’t over-simplify here. I can think about rainbows and butterflies all day, but the room is still spinning.
  10.  I know just what you are going through. I have a few friends who suffer with chronic health issues. Ironically, they have never said this to me. They know enough not to. I do appreciate empathy, and anyone who has had vertigo (even for 10 minutes) does feel like a kindred soul at some level. Still, be careful with your words. Just because you drank too much and the room spun one night doesn’t mean that you know what I am going through.
  11. Any variation of “All things happen for a reason.” or “God gave you this to teach you a lesson.” I agree that the adversities that we overcome in life are part of what makes us who we are, and I’m all for learning from my experiences. However, when you say things like this to me, it almost comes across as “You deserved this.” Don’t go there.
  12. What are you doing this weekend? This falls under the category of just not thinking before you speak. I know this is just a typical conversation starter for most people. For me, it just reminds me of all of the things that I cannot do because of my illness. Also, answering, “Trying to get to the bathroom and back just like I do every day” is awkward.

So what should you say? I really have no idea. I know how hard your job (as my friend) is, and I often wonder whether it is harder to be the person who is sick or the person who loves the sick person. I know you’d “fix” me if you could. Humor is good. Laughing always makes me feel better. Tell me what is going on in your life. You aren’t rubbing it in because I can’t do whatever it was you did today – I still want to know about your life. Be understanding when I just don’t have the energy to talk to you on that particular day. Even listening can be too much some days. Just be there. Even if you are saying all of the wrong things…you’re still letting me know that you care. ❤

Anyone with chronic health issues have something to add to this list? Leave a comment below…

Everything above, except for my introduction, is quoted from Allison.  If you’d like to share this list, please get her permission, and give her credit. (but you all knew that didn’t you?  Visit her at Taking Life for a Spin)

This post was written as part if NHBPM – 30 health post in 30 days:, and is also a part of NaBloPoMo

Living in Limbo, life with an Invisible illness. A Guest Post

I’d like to thank Maureen from Sunshine and Chaos for writing a very emotional post for us.  Maureen is on a mission to embrace the new her, a person with an unnamed invisible illness.  Her blog is very up beat, and inspirational.  I suggest everyone check it out.

Maureen told me that she thought this would be an easy post to write, but found it very hard.  She said everything about her condition is just so general.  “When you not on firm footing you’re just out there flailing.”  I think she did a great job!

I have a problem.

My problem is that I’m in limbo like my friend in the picture, Wile E. Coyote.

I have something wrong with one of my ears. I say something because the ENT doctor could only say “it” happens to a lot more people than what is realized and to try to find “a quality of life”.

My “it” is balance issues that started in 2000 and my having a chronic illness was finally confirmed by the ENT in 2005. What I have is basically an invisible chronic illness with no name.  A “we know how you’re being affected, just not what is causing it“.  I feel like Wile does in that picture. On firm ground one minute, in limbo waiting for gravity to take effect the next. I was healthy one minute, living in limbo the next without a specific diagnosis. No specific diagnosis, no possible cure,  no plan of action that can help me get back on my feet and be a contributing member of society again.

The doctors would always ask me if I would get dizzy and I would say no.  A big part of my problem over the years is that I rarely got dizzy. If I did, it didn’t last long and I would attribute it to something else such as getting up too quickly or having a head cold.  I did have a few dizzy spells a number of years ago due to water in the ear and I don’t get anything like that.  I NEVER FORGOT that feeling of the world spinning. And, I would add,  my mother had Meniere’s and I saw how she reacted and dealt with it.

What it really felt like at the beginning was “the flu that wouldn’t go away”. Sounds like a bad horror flick, doesn’t it? On my bad days, that’s what it still feels like.  I had high blood pressure for the first time in my life, light-headed, slept a lot, no energy, ached a bit, lost my appetite and had a bobbing feeling in my head. Different conditions and diseases were ruled out. The flu eventually went away and also ruled out were chronic fatigue syndrome, mononucleosis, peri-menopause, thyroid, my heart (in the beginning it would beat irregularly and at times fast), brain tumour (I would get a tingling sensation up the back right side of my head that would turn into a headache) and whatever else all those tubes of blood and other tests might confirm.

The best word to describe how I now feel is disequilibrium. Here’s a definition from the U.S. National Library of Medicine:

Disequilibrium is a sensation of impending fall or of the need to obtain external assistance for proper locomotion. It is sometimes described as a feeling of improper tilt of the floor, or as a sense of floating. This sensation can originate in the inner ear or other motion sensors, or in the central nervous system.

Now that I know that the problem starts with my ear, I believe keeping control of my head movements has reduced most of the symptoms.  But they have only been exchanged with other symptoms and side effects.  What I get is a woozy feeling, like I’m in a boat and bobbing up and down on small waves.  I can be sitting still and it will feel like someone is shoving me to the right. I can stagger like I’m a bit drunk but be stone-cold sober.  Changes in the weather affects me so much more.  Before, it meant random sinus headaches.  Now I start feeling off-kilter and want to stay in bed.  Sometimes going for a walk will help me feel better, sometimes a walk only makes things worse.  I will pace the hallways of my house just so I can have a “walk” and avoid being far from my bed in case I have to quickly lie down.  I have a stationary bike that I use so that I can stay seated and not move my head.  I take my cell phone with me on even the shortest of walks, just in case I have to call a cab to get home.  On days when I want to, or have to do something, I’ll do it and have to lie down afterward so everything in my head can calm down.  And, the rare times when I’m close to feeling “normal”, I sometimes overdo it and then I can easily pay for it for a week afterwards by needing to stay in bed.

After all these years, I the person, looking back objectively, can appreciate that in the beginning the doctors couldn’t tell what was going on with me. Everyone, including me, thought it was a really bad case of the flu.  But, that idea lasted only so long. I understand that, even as the months progressed,  my symptoms were still, general in nature.

However, I the patient, wish the questioning went beyond asking “light-headed or dizzy” and included asking about “balance”.  I wish I didn’t live in a restricted-budget medical climate where a doctor is not able to order tests based on gut instincts and experience or not have someone else question some of the tests. That actually happened during one of my tests – a doctor questioned why my doctor ordered a test.  I have never had a doctor do unnecessary tests.

I also wish that the family history of Meniere’s was taken more seriously. My mother had it and I would ask if I had it or if there was a genetic connection.  I was always told no but it seems more than a coincidence that a close relative suffered from ear problems.

What I really wish is that I had a disease with a name.  I could have a fighting chance at treatments or a cure.  It would bring legitimacy to what I’ve been dealing with all these years.  People deal with illnesses in different ways.  I was only in my mid 30s when I first became sick.  You’re supposed to bounce back, not stay sick.  Some people understood.  They were usually the older ones and had friends or family dealing with various illnesses.  The younger they were, the more chances that I wasn’t believed.

Not being able to be as physically active means that my overall health and stamina has deteriorated.  Heart disease and diabetes runs in the family.  How has the loss of activity sped up the possible development of these diseases for me?  How many years have been taken off my life?  How will my final years be lived out?  We never know how things will work out in the end, but we don’t want to rush things along.

As the saying goes, I truly am sick and tired of being sick and tired.  And being in limbo means not much chance of going back to a normal life.

There are so many things that Maureen said that rings true, isn’t there?  I wrote a post not too long ago about being happy about a diagnosis.  Not that I had the disease, but that it now had a name.  It is so very hard to have a disease that doesn’t have a name.  As Maureen said, it would bring legitimacy to her suffering.   

Thank you so much, Maureen, for talking about such a difficult subject, and speaking so honestly.

Meniere’s Treatments, Guest Post – Lin

Lin, known in the blogosphere as LinLori, has a very interesting blog.  You can find her at  Lin is a mother of 2 toddlers, and wife to “MarvMan” who is currently active duty Navy.  This is her story of being diagnosed with Meniere’s and the treatments she has tried.
When Nothing WorksAs I write this post, my mind is swirling with all sorts of things. My kids are getting ready for me to start homeschooling them, we’re getting ready for a cross-country move, I’m trying to clean out my house of unnecessary stuff, we have to figure out how to get two vehicles from one end of the country to another with only one of us being fully able to drive 10-12 hours a day – and of course, that isn’t me.So I’m hoping that what I write makes sense, will help some, or will at least be something other Meniere’s friends can commiserate with. We have nothing if not each other.

My first attacks actually started while I was active duty Navy. I’d been crouched under a dark aircraft for a good couple hours working on an engine and when I came out into the bright hangar bay, I got dizzy. It was easily brushed off as, “A head rush. Clearly I was under there too long.” But they continued.

And of course, before seeking a doctor’s advice, I got pregnant. And so any complaints of dizziness were brushed off as, “Well, you’ve got double the amount of fluid in your body right now; of course you’re going to be dizzy.” So it continued and I thought it was just a bothersome thing I’d have to deal with because, clearly, my body was more sensitive to how much fluid was in it than most people.

It wasn’t until after my separation from the Navy (honorable, just early for parenting conflict reasons), and after our second child that my husband said, “You know, I think you should go have this checked out.” So I did.

The doctor said it was BPPV – benign paroxysmal positional vertigo, as we all know – and there wasn’t anything he could really do about it, except give me some exercises to do and tell me to come back if it got worse. Well. Thanks for that, doc.

And then we moved from Washington to Nevada. For a time, I ignored the “spells,” as I called them. What else was I to do? But,  of course – they got worse.

So it was back to the doctor with me. This time a new doctor, on a new base. He repeated many of the same in-office tests and checked my ears, cleaned them out, and gave me a referral to an ENT.

The ENT agreed with the BPPV diagnosis initially, and sent me for balance therapy. It helped a bit, and I enjoyed the sessions and the physical therapist I was working with.

Then I had a seizure.

Seizures are, of course, not usually related to Meniere’s, but migraines are related to Meniere’s and – to all our best knowledge after over a year and a half of research and trial & error – this seizure was migraine related.

Thus began the experimentation into how much effect, if any, food had on my Meniere’s. This is what we learned:

MSG has an insane effect on Meniere’s for me. If a food has MSG in it, within fifteen to thirty minutes of consuming the food, my heart rate will be doubled, I will be short of breath, experiencing hot/cold flashes, and – but of course – vertigo attacks that leave me bedridden.

The label “MSG” also happens to include High Fructose Corn Syrup. So you can imagine the rage I have at those, “It’s just like sugar!” commercials. No, it is not.

Of course, salt has an effect, from previous knowledge of how sensitive I am to fluid retention. So I’ve greatly decreased my salt intake.

In addition, I, the big coffee drinker, have had to seriously cut back on the caffeine intake. I usually only have a cup in the morning, and perhaps one in the afternoon or one in the evening. The interesting thing here is that I don’t feel as awful if I stick to grinding the beans myself and brewing it in a press-pot. I have yet to figure out the connection there.

What other treatments have we tried? Well.

Diuretic – The diuretic does seem to help, especially around my monthly cycle.

My first ENT had me on so many steroids…

Oral Prednisone – This. One. Sucked. I felt nothing but the side effects. I was moody, always short-tempered, tired, loopy, and I gained seven pounds.

Ciprodex ear drops – This was after the ENT installed a tube in my ear drum in order to better administer the ear drops. I’ll cover the tube in a moment. The Ciprodex really didn’t seem to help all that much. My inner ear was incredibly sensitive to the temperature the drops were at, and it seemed to actually spark a vertigo episode rather than help any.

Steroid injections – I don’t remember the name of the steroids they injected through the tube, but these? Did nothing.

So when I got sick of my first ENT running up the insurance costs for steroid treatments, I found another ENT. This one now has me on

Triamterene – water pill, of course
Elavil – Anti-depressant, with surprisingly unexpected helpful effects for those with Meniere’s
Meclizine – Emergency anti-nausea anti-vertigo med for when I have an attack.

Unfortunately, as with the past few days, we’ve discovered that the Elavil – a second round after a 1 month break – is no longer working.

And, thus? The search continues. I’m only 26 – there’s time, right? 😉

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.

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.

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!!

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.

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

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.

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.

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:

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.

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.