My Puzzling Secret: I Can't Walk in the Dark
My symptoms came on quite suddenly. One day I was fine, without any dizziness or balance problems at all. The next day I was struck with both problems—to such a degree that I was unable to work a full day and had to be taken home at lunch. Many of my strange symptoms have only worsened since that day four months ago.
I haven't been able to get back to work, and many days I'm confined to the house, unable to even go down a few steps to enjoy the sunshine. Well, I may manage to go down the steps, but going back up the same steps takes twice as much energy, and many days I don't have the energy to do both. Some days when I get out of bed, my symptoms aren't as severe, allowing me to at least sit in the sunroom and enjoy feeling the warm breeze. Other days I can tell when I roll out of bed that it's going to be an intensely difficult day.
Every day, two things persist: dizziness and lack of balance. These are my constant companions, I regret to say. The degree to which I am affected vary from day-to-day, but they never go away. Some accompanying symptoms are nausea and many near falls, with side effects of depression and hopelessness.
Other complicating diagnoses
For many of you reading who are experiencing these same symptoms, or who have been diagnosed with vestibular migraine, you may be saying that my symptoms aren't like yours. In all fairness, I must say that I also have some cardiac diagnoses that are also going on simultaneously. This is making a determination for my sickness more difficult.
Four years ago, I was diagnosed with cardioneurogenic syncope, also known as vasovagal syncope. Last summer I was hospitalized and was then diagnosed with POTS (postural orthostatic tachycardia syndrome), a lesser known cardiac diagnosis. With that being said, your symptoms won't be the same as mine, and vice versa, and that's okay.
Specialists I've Seen Lately
In the last four months, in searching for a doctor to help me, I feel like I've been to appointment after appointment, and from one specialist to another. That's probably because I have.
As I said, I already have a cardiac history, so I began with my cardiologist. He is a brilliant man in his specialty, and is well-respected in the city where he practices. I've been blessed to have happened upon his expertise at just the right time. My pacemaker was checked by a professional and was found to be working correctly (Good!). He made some changes and additions to my medicines, which may or may not have helped with how I'm feeling. So that didn't work.
After visiting my primary care doctor, I was referred to an endocrinologist, since I thought I could possibly have a tumor on my one or both of my adrenal glands. That visit turned up with completely normal lab levels, which is good, I guess. Good that nothing was wrong there, and I don't have those tumors, but I still was without answers.
That visit led to another visit with my primary doctor, and I was told I needed to see an opthamologist since I have more dizziness along with a "sinking" feeling when I do up or down any steps. Also, when I go up or down any ramps or anything with any sort of incline to it at all (and I mean ANY degree of incline), I instantly feel like I'm about to lose my balance and fall, along with nausea. The nausea increases as well as my loss of balance the longer I'm on that incline. Sounds strange and unbelievable, I know.
Anyway, I went immediately and made the opthamologist appointment. That visit didn't help any, either. Once again, I was told everything looked normal, with my vision being perfectly fine. I was told I don't see as well as I may have at 20, but I'm nearly double that now, so I may need some eye drops for slightly dry eyes and possibly some non-prescription reading glasses. Good news once again, but I still left feeling more hopeless. I remember crying on the way home, with the reassuring hand of my husband holding mine tightly.
I was next referred to an ENT at a large teaching hospital close to my home. Since I can hear alright, and haven't experienced any of the hearing problems I had read that others often have, I didn't see much of the point in seeing an ENT, but none of the other specialists were able to help, so I thought, "Why not?" It couldn't hurt, right? And now I'm so very glad I did!
Vestibular Migraine Diagnosis
When I went to the appointment, my husband at my side, I met a doctor who actually believed all the crazy-sounding symptoms I've been having. He never once got that look on his face that I've seen with some other physicians. You know that look. That "She has GOT to be making this up!" look. If you've been searching for help with your symptoms, too, have hope!! There is a doctor somewhere who will believe you when you tell him/ her all these things that you feel no one believes.
The more symptoms I told him, and following his office exam, he ordered an MRI and a couple other tests to gain more information. His answer was with caution since the tests haven't been done yet, but he is pretty sure I have vestibular migraine. He also thinks I have another issue at this same time that is complicating matters, but he at least gave me some kind of answer! And after all this time of feeling cut off from most of the world, unable to go to church or work, unable to enjoy so many outdoor hobbies, I have the beginning of an answer! Hallelujah!
Symptoms of Vestibular Migraine
Not everyone who has vestibular migraine have every symptom (like me), but these are a few of the medical symptoms physicians use to diagnose a patient with it. According to Johns Hopkins medicine (hopkinsmedicine.org), a few of the vestibular symptoms of vestibular migraine are:
- extreme sensitivity to motion
There are also some hearing symptoms. They are:
- muffled hearing
- ear fullness
- tinnitus or ringing in the ear
Personally, I have most of the vestibular symptoms, but none of the hearing symptoms. Also, I have no pain at all. I'm thankful to God that I don't since hurt, since so many others do.
Walking in the Dark
I know I mentioned my loony-sounding symptom, but haven't said much about it. My near-complete inability to maintain my balance after turning off the lights at night has only developed in the last couple months, but for now seems around to stay. In my opinion, it is the hardest-to-believe symptom. I'm not afraid of the dark; I just am physically unable to walk in the darkness.
It has been my nightly ritual for years that before I go to bed, I prepare a cup of hot tea. When the tea is ready, I turn off all the lights and walk down the hall to the bedroom. Easy, you say? It used to be!
Now, if there are no other lights in the immediate area where I am, once I flip the light switch off, I immediately feel dizzy and completely unbalanced. My response has been to (first) put down the hot cup of tea, but also to sit down right where I am. If I don't sit, I have to hold onto the counter as well as the wall to prevent falling. I've tried not using anything for support, and the bruise on my hip from colliding with the kitchen counter taught me otherwise!
By now, my husband and I have a system worked out that aids me in walking to the bedroom, still carrying my tea (most days, anyway) without too much assistance. While I am preparing my tea, he turns on the hallway light and a light in the bedroom so that I am never in the dark while I journey from the kitchen to the bedroom. I say journey, because many times it feels like a really long way to have to go!
Our hallway is only about 15 feet long, but it has taken me 35 minutes to walk it! That is because of all the symptoms, and not because I'm otherwise physically impaired. Some days any movement at all is difficult to handle, with the nausea that accompanies it. I find myself wondering who would win in a race with a sloth, me or the sloth!
When I told the ENT my secret of being unable to walk in the dark, the look on his face was like a light bulb that just lit up! Not that he was excited to hear of my half-embarrassing admission, but because he was able to use that information in his diagnosis and further care of my condition! I was really glad I brought it up!
Tell It All
One of the things I would recommend for those of you still struggling in your search to find a diagnosis for whatever it is you are experiencing is to tell it all! Tell the doctor all your symptoms, problems, and issues. Try not to leave anything out, even if you think they may not believe what you're telling them. You never know, that may be just the tidbit they need to make an accurate diagnosis or to be able to order the correct diagnostic tests to best help you. Write your symptoms down if you need to; there's no harm in that at all!
Another recommendation is to not give up! I haven't been "sick" as long as many who are diagnosed with vestibular migraine, but I've been dealing with chronic illness for a few years now, and I know it isn't easy. Many days it is tempting to just accept things as they are, and try to salvage what you have left of your "normal" life. Do not give up!! Sure, there are changes you may have to make, and that's hard. I have had to do that too! Keep researching! Remain steadfast!
Be Your Own Advocate
No one knows your body and what is happening to you better than you! Keep looking for a doctor who can accurately diagnose you so you can get the relief you so dearly yearn for!
I've had to learn, and am still learning, to swallow my pride and accept help from others. Most of the time now, I need help from others to walk if I'm going very far at all, or else I am using a walker/wheelchair combo. I ride the motorized shopping cart when I go to Walmart. I can't drive, so I have to get a ride to wherever it is I need to go. Family and friends are a vital part of your being able to hold onto your hope and dignity.
Be your own advocate! You may feel you are alone in what you are going through, but you aren't! There are others who are available to you on many types of social media who are experiencing the same things as you who are also looking for a fellow soldier in this fight! Stay strong and hold the course!
I'd Like to Hear from You!
If you have been diagnosed with vestibular migraine, or think you may have it, how do you cope, both physically and mentally? I'm still in the learning stages, but if we can help each other, that would be great! What are some of the tools you use? Are you a member of any social media groups for vestibular migraine? If so, which ones?
© 2017 Diana Majors