Really quick update

I forgot to hit Publish, I wrote this a couple of weeks ago…or last week, I don’t remember. I’m still having a little bit of memory issues. So…her it goes.

The hospital has acted on my complaint.

The staff has had a training session on how to handle patients.

Do not assume the patient is in the wrong.

Do not ASSUME anything, UNDERSTAND what is happening then react.

Never react unless you understand.

Security should only be called when patient is a threat to themselves or others.

That is part of the training the nurses and staff on the neurology floor have now been given.

Since the hospital lost a lot of their staff due to COVID some of the training hasn’t been done. They are certified in their positions, the nurses have graduated, but they haven’t had proper training in how to handle every situation.

This was not supposed to be said to us, but the person who is monitoring complaints (and talking to S) was a nurse for 40 years, she sees how different it is since the pandemic. She is trying her best to make sure nothing like what I went through happens to another person. That’s all I wanted.

Finally it is in my records that I am deaf with cochlear implants. I thought it was in there before, so that confused me. We were told if I have to go in that hospital again I need to make sure there is a sign on the door that says “STOP patient is deaf with cochlear implants”, they all need to know I can’t hear everything that is said, sometimes I can’t hear anything that is said.

I won’t be getting ketamine any more. I’m very disheartened that it did not work. I felt like it was the last resort. I pretty much still feel that way, but I’m not giving up! I’ll keep trying, that’s all I can do. It’s very hard to live with a constant migraine, people who’ve never had one cannot understand, but they can be sympathetic and supportive. If you don’t have anyone in your life who meets those requirements I suggest you go out and find someone as fast as you can. If there’s no one at home to support you, reach out to a support group, in person or on line. If you need, contact me, there’s a tab for that at the top of the page. (note I do not accept request to post on my blog to advertise a product…) I am very happy to talk with anyone who needs support. Or just someone to vent to.

That’s all for now,

I hope you are all safe and as well as you possibly can be.

W

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Meniere’s and Psychological Distress

wendy hair

When I was first diagnosed with bilateral Ménière’s disease by my doctor at Duke he told me two things that will always stick with me, “Ménière’s is one of the worst disease you can have that won’t kill you.” and its “a disease of random punishment.”  He compared Ménière’s attacks to living in a war zone, you know that you will be under fire at some point you just don’t know when.

Having a disease that makes you feel as if you could be attacked at any moment causes a lot of psychological distress.  A study conducted by Dr Kirby and Professor Yardley at the University of South Hampton found that those with Ménière’s Disease have a much higher incidence of post traumatic stress syndrome (PTSD), health anxiety and intolerance of uncertainty to distress than non-sufferers.

Nearly one in eight people with Ménière’s were found to meet the criteria for full PTSD, compared to the general population where just one in sixty has PTSD. The high levels found in Ménière’s sufferers are comparable with those found among people who have suffered a stroke, heart attack or heart surgery.

I’ve been diagnosed with PTSD.  I’ve known this for a while but it has never been as apparent as it has been the past month.  For the past month I’ve had very little vertigo.  The vertigo I have had has been minor and only lasted for a very short period of time.  Most days I’ve been vertigo free, but I haven’t been able to enjoy these days.  I am constantly expecting an attack at any moment.  I’m on edge, jumpy, irritable, anxious, argumentative….  I try so hard to enjoy the good days I have and put the bad days in the past, but that doesn’t seem to be working recently.  I have been taking advantage of this good spell a little but I’m on guard all the time, waiting for the ax to fall.  Waiting for that next vertigo attack.  Sometimes I deal with this much better than other times.  Right now, I’m a nervous wreck.

I found a test on line that ask many of the same questions my doctor asked me to get my diagnosis.  If you feel you might have PTSD you might want to take this test and then take your findings to your doctor to discuss it.  PTSD Test

additional reading and helpful sites: