Friday, February 18, 2011

Another Chronic Illness? Really?

I believe it is common for those of us who have chronic illness to have more than one we are battling. Though Migraine disease has been the major chronic illness I have faced, I also have other health issues including  IBS, anxiety, environmental and food allergies, tachycardia, fibromyalgia and a history of asthma. But in the last few months I have been diagnosed with another chronic illness and it has completely turned my life upside down.

In August 2010, I started having symptoms that were not usual for me, but not alarming. I was more fatigued than normal and quite dizzy. As a rule, I have a low blood pressure and if I am not well hydrated, I can get these symptoms, so I attributed them to lack of hydration. However, by September, the symptoms became more severe. I would be woken up in the middle of the night with symptoms that made me think I was dying. 

As an aside here, I loathe the emergency room. After years of trips to the ER,  I feel that the doctors know much less about my body than I do and I simply do not trust them. So, I fought my husband when he wanted me to go. I wanted to push through and wait it out. Finally at 4am, my condition had deteriorated so badly that he was unable to get me to the car and had to call an ambulance. Later, we found out I was suffering from vertigo and learned from a health professional that it is one of the most common reasons people go to the ER because it can be so severe they think they are dying. So, I was not alone nor was I being dramatic.  

I started out seeing an ear nose and throat doctor who was convinced my vertigo was related to my Migraines. Since I was not experiencing Migraines at the time, it did not make sense to me. However, my ENT insisted that my Migraine specialist be brought into the conversation. Dr. Robbins, my Migraine specialist, sent me to a physical therapist for vestibular rehabilitation to help treat the vertigo. However, I was discharged after my second visit because the PT felt my case of vertigo was "special" and that I would not benefit from the therapy. 

I had also started to develop symptoms in addition to the vertigo. I noticed that I would have intermittent hearing loss in my right ear. It felt as though I was hearing underwater. I felt fullness in my ear and had ear pain. Later I started to get ringing (tinnitus) in that ear as well. And then I started falling down. I have since learned these are called "drop attacks". It is nothing like passing out, which I have had my fair share of. I am conscious, and fall straight to the ground. It is almost as though my body has forgotten where it is in space. I have my fair share of bumps and bruises, but thankfully have only hit my head once.

After an MRI, audiological examinations and other tests to rule out certain forms of vertigo, my ENT began discussing Meniere's disease. Like Migraine, Meniere's does not show up on a test or a scan; it is something that is diagnosed over time mainly based on one's symptoms. And I have all of the symptoms.The National Institute of Deafness and Other Communication Disorders (NIDCD) has a wonderful information on Meniere's Disease.  Meniere's is a disease of the inner ear that eventually takes one's hearing. Usually Meniere's is unilateral (in one ear), so when I showed up at an appointment with my ENT saying that I was noticing intermittent hearing loss, and ringing in my other ear as well, she became quite alarmed. She expressed that having bilateral Meniere's disease is an extremely disabling condition and felt as though I needed to see a specialist, a neuro-otologist to determine what is going on. 

I saw the neuro-otologist, Dr. W, late January 2011 and I really like him. When we discussed my Migraines, he actually got on a soap box saying that not all Migraine specialists are good eggs. It was so exciting to hear a physician know that and actually advocate for his patients to get the best care for their Migraines! Anyhow, after taking an extremely detailed history, Dr. W discussed how Migraine Associated Vertigo and Meniere's disease are on a spectrum. In the beginning, my symptoms seemed to be more Migraine related even though they occurred in the absence of Migraine, but given my current symptoms, he believes that I probably do have Meniere's. He said he wants to hold off judgment on whether I do in fact have Meniere's in my left ear, but he feels that I most likely have it in my right ear. 

The unfortunate part of this chronic illness is that there are not any good treatments out there for Meniere's or really for vertigo. I have an acute medication, diazepam, to take for my vertigo, which helps, but unfortunately sedates me for 6+ hours. I have tried oral steroid, prednisone, with no success. On February 8, 2011, I had an outpatient procedure called intratympanic steroid injections. Dr. W injected steroid through my ear drum in hopes that this would help my Meniere's symptoms, and more specifically my vertigo. Unfortunately, this painful procedure has not help me at all. According to research, the percentage of people who are helped by this procedure is low, but as there is no risk of damage to the ear, it is a procedure worth trying. The next level up would be to inject an antibiotic, gentamicin, into my ear, but that has a high risk of taking my hearing. Currently, I only experience intermittent hearing loss and my base-line hearing is quite excellent. So, if we decided to take this step, it would be quite a risk.

Unfortunately my Meniere's symptoms have become disabling. When vertigo hits me, I am unable to walk, focus, concentrate, or see straight. And of course the episodes of falling down are quite scary. The thought of having Meniere's the rest of my life and not knowing how disabling it will become is frightening. I am just coming to terms with what having Meniere's, another potentially disabling chronic illness, means in my life. I guess it all comes back to the word I wrote about in my last post, acceptance. I am not there yet. Actually, acceptance in regards to the Meniere's disease seems far away. There is so much I don't know about Meniere's and therefore I have a lot of fear. So, I need to educate myself more and next on my list is to seek out others who have Meniere's disease. As I have found the community of Migraineurs has helped me along my path, I hope that meeting others with Meniere's will help me on my path to acceptance.

4 comments:

  1. Kelly, I know you wrote this a long time ago, but this information is so valuable. When I was in the hospital on the head pain unit, another patient was having symptoms with balance and vertigo and her ears. I told her I am not an expert and neither are you, but just vaguely knew of your experience with Miniere's disease. It was something she had never heard of. She's a very down to earth person so she didn't get upset when I mentioned a new disease, so she appreciated the information and was planning on investigating it.

    ReplyDelete
    Replies
    1. I'm so glad that knowing about Meniere's helped you and her!

      Delete
  2. Have you ever been tested for Lyme disease? You have very typical symptoms. A regular doctor is not going to give you the correct diagnosis if you have this. LLMDs (Lyme Literate Medical Doctors) would be the only doctor that would be able to diagnose this disease. I, along with many others throughout the US, have this. Might want to check it out.

    ReplyDelete
    Replies
    1. Thanks Marti for bringing up Lyme disease. I had surgery 3/29/11 for the Meneire's disease mentioned above and it significantly helped with the vertigo. The fact the surgery was a success and that I'm having hearing loss confirms the Meniere's diagnosis.

      However, I am going to the Mayo Clinic MN soon for other symptoms that doctors have not been able to nail down (and frankly baffled most of them) I expect that they will test for everything under the sun--and expect they'd have a LLMD on staff. I will bring up Lyme disease with them as you mentioned some of what I am experiencing is *quite* simiilar. I really really appreciate your comment. How kind of you!

      Delete