Purple background with title in red font, an image of THE SCREAM in the center: Tinnitus Awareness: Pulsatile Tinnitus

Tinnitus Awareness: What is Pulsatile Tinnitus?

This week, February 1-7, is Tinnitus Awareness week. Many think of Tinnitus as a silly ringing that some people hear. Often it isn’t taken very seriously, even when reported to a doctor. A rare form called Pulsatile Tinnitus is even more misunderstood. In this week’s post, I am using A Chronic Voice’s February Writing Prompts of Defining, Allocating, Uniting, Saving, and Educating to bring awareness to this unusual and possibly life-threatening condition.

About 11-years ago, after an incident involving my neck, I began to hear my heartbeat in my ears. In 2010, I was involved in a hot yoga class that I loved. Unfortunately, I was pushing myself to do more than I should by holding a headstand longer than I was physically able to remain in control. I ended up coming down fast and felt a bit of a pull in my neck. A day later, I had severe pain, the type you get with a pinched nerve, starting at the right side of my neck, going down the shoulder, and into my arm. It drove me insane.

After seeing my doctor and starting physical therapy, I was told that they didn’t think that the pain I was experiencing had anything to do with the headstand I had done. After about a week (a few days off from work), the pain subsided. However, one night, on my drive home from physical therapy, I remember distinctly hearing and almost feeling for the first time my heart beat just behind the earlobe of both ears.

An Often Ignored Condition

Throughout the years, I mentioned to my doctors about this ongoing pulsating thrumming in my ears. They listened to my neck and behind my ears, only to shrug and say I was fine. I definitely got the sense that this was a weird comment on my part and they seemed to suggest it was all in my imagination.

Throughout the years, I mentioned to my doctors about this ongoing pulsating thrumming in my ears. They listened to my neck and behind my ears, only to shrug and say I was fine. I definitely got the sense that this was a weird comment on my part and they seemed to suggest it was all in my imagination.

About a year ago, in a Facebook Fibromyalgia group that I belong to, the topic of tinnitus came up. I described what I hear (a whoosh, whoosh, whoosh) that sounds like the heartbeat of a baby found during an ultrasound. Finally, someone named what it was: Pulsatile Tinnitus. This discovery that there was a name, lead me to researching more about it.

This is very close to what I hear. (This and other sound bites of Pulsatile Tinnitus found on the website wooshers.com)

Defining the Difference Between Tinnitus and Pulsatile Tinnitus

Pulsatile tinnitus is more uncommon; only occurring in 10% of all tinnitus patients according to Penn Medicine. The patient hears rhythmic whooshing, swooshing, pulsing, pulsating, clicking, or other sound that is in sync with their heartbeat.

What is Pulsatile Tinnitus (PT)? This is a rare form of tinnitus (Some even say it isn’t tinnitus. *see Whooshers.com). However, like normal tinnitus, PT is sound not coming from an external source that is heard in one or both ears. Traditional tinnitus is the perception of ringing, buzzing, clicking, hissing, or humming that tends to be constant and can be of varying tones and volume. This type of tinnitus is fairly common with 15 to 20 percent of people experiencing it to some degree. All tinnitus is not a disease, but a symptom of something wrong in the auditory system, such as: earwax blockage, hearing loss, infection, Meniere’s disease, thyroid abnormalities, hormone changes in women, and even a brain tumor.

Pulsatile Tinnitus is a Rare Form of Tinnitus

Yet, pulsatile tinnitus is more uncommon; only occurring in 10% of all tinnitus patients according to Penn Medicine.  The patient hears rhythmic whooshing, swooshing, pulsing, pulsating, clicking, or other sound that is in sync with their heartbeat. PT always has a physical cause and while they can often be fairly benign, others potentially life-threatening. This kind of tinnitus is most often caused by problems with blood flow in the head or neck. The condition also may be caused by brain tumors or abnormalities in brain structure. This symptom is not one that should be passed over as something to just “live with” and warrants a visit to an ENT and diagnostic testing.

The pulsating sound may come and go or it may be constant. For many patients with PT, the noise is loud and interfere with their daily lives. For some, it can cause major loss of sleep, anxiety, and depression.

The bruit I experience gets louder when I’m going to sleep. It can be somewhat distracting, although, I’ve learned to mostly tune it out. If I wear earbuds, I notice the noise getting louder. If I pop my ears, I tend to lessen the volume, but I don’t ever make it silent. Some companion symptoms I’ve read in PT research and articles are concerning to me: feeling that the head is full of cotton, unable to think clearly and focus are issues I have that I have attributed to Fibromyalgia. However, I don’t have issues of severe headache that many patients report or much in the way of dizziness.

What is Pulsatile Tinnitus?

Being tinnitus is a harbinger of another condition, it’s important to educate yourself as to what possible other conditions could be the cause. Once I found out the name for what I was experiencing and read about the causes, I decided to push having it checked out by an ENT.

Being tinnitus is a harbinger of another condition, it’s important to educate yourself as to what possible other conditions could be the cause. Once I found out the name for what I was experiencing and read about the causes, I decided to push having it checked out by an ENT.

At my consultation visit, the hearing test showed that I had “the hearing of a teenager” and no noticable issues with pressure. I did have some wax build up in my left ear, but other than that, there wasn’t anything that indicated a problem. The ENT couldn’t hear my PT by using a stethoscope. This, I think, was the main reason he seemed to think it was more related to stress and Fibromyalgia hypersensitivity (which left me very frustrated). *See my post: Dealing With a New Diagnosis for more detail about that appointment. However, being I described the heartbeat whooshing sound, the ENT did set up a CAT scan with contrast of my head and neck. Surprisingly, the results showed that I have Fibromuscular Dysplasia (FMD) in both the left and right inner carotid arteries.

Fibromuscular Dysplasia is a Symptom of Pulsatile Tinnitus

Pulsatile tinnitus is one of the symptoms of having FMD in the carotid arteries. However, doctors aren’t exactly sure what the connection is. Arterial walls are formed by three layers. The middle layer, in an artery with FMD, grows wonky. This growth causes either a pearl-string-of-beads effect (multifocal) or in a single narrowing, barrel-like form (focal). I have Multifocal FMD in both the inner carotid arteries, causing twists and turns in those segments. This could possibly be the reason for the bruit.

A graph of various jewel tones on a yellow background showing the daily life effects for those living with PT.
Both forms of tinnitus can cause major disruption to the lives of those who live with it.

Is Pulsatile Tinnitus Life Threatening?

Pulsatile tinnitus is a less understood condition. Often, as shown through story after story on the Whoosers.com site, there aren’t immediate findings of its presence even in tests such as MRIs. But once again, this is a time where caution and self-advocacy are needed. Many times, those reading these tests aren’t educated on PT and miss important signs.

Pulsatile tinnitus is a less understood condition. Often, as shown through story after story on the Whoosers.com site, there aren’t immediate findings of its presence even in tests such as MRIs. But once again, this is a time where caution and self-advocacy are needed. Many times, those reading these tests aren’t educated on PT and miss important signs.

This was the case of Ivelisse Torres. One September night in 2018, she woke up with a severe headache, neck pain, shoulder pain, and hearing of rhythmic whooshing in her right ear. She did go to urgent care who noted she had a bulging eardrum. From there she saw a few audiology specialists who found that she had interregnum hypertension. Next, Ivelisse was referred to a neurologist. Three “normal” MRIs later, she was told that there wasn’t anything could be done. The intense presence of the whooshing was causing her to lose sleep.

Social Media Groups Can Save Lives

The Facebook Community (Pulsatile Tinnitus: Whooshers Unite!) saved Torres’s life. Many fellow Whoosers suggested that she get her MRI tests and circulate them to PT specialists (generally found in big city medical centers). From there, she was able to see a specialist at Weill Cornell in NY who ordered an MRV, which found that she had a venous aneurysm which was sitting on her right eardrum. Her Pulsatile Tinnitus was life threatening. After undergoing surgery, she now has two stints and 14 coils in her brain, repairing the aneurysm and alleviating the Pulsatile Tinnitus.

Surgery Needed to Eliminate Life Threatening Pulsatile Tinnitus Symptom

Click here for a Top 10 PT Tips for Doctors downloadable PDF written by doctors.

Uniting Those Impacted by Pulsatile Tinnitus

The fact that there isn’t one are of the health system that takes responsibility for Putlsatile Tinnitus, meaning no one group of doctors studies it. Due to PT being a rare and highly individualized condition, it has been essential that Wooshers unite through quality forums like Wooshers.com to share stories, resources, and support. This provides both patients and the medical community important resources and information.

The Whoosers website offers patients and the medical personnel dedicated to treating them:

  • Links to articles about other whooshers and their paths toward proper diagnosis.
  • Links to medical Web sites with information about pulsatile tinnitus and explanations of possible causes.
  • Tips from other whooshers about how they cope with the constant heartbeat sound, day and night.
  • Support from people who understand what you’re going through.
  • Through the non-profit Pulsatile Tinnitus Foundation, they raise money to further research, resources, and support.
Pulsatile TInnitus Diagnosis Codes are new as of 2016.  Pulsatile Tinnitus is now considered its own diagnosis, not tinnitus.

In 2016, the Pulsatile Tinnitus Foundation worked to bring about separate diagnostic codes that help patients get doctor visits, tests, and treatments covered by their insurance.

A Very Informative Webinar put on by PTF with Leading Pulsatile Tinnitus Specialists

Allotting the Importance of the PT Symptom

While the pulsatile tinnitus which I experience isn’t greatly impacting my life, I still am concerned about the mention of “cotton head” and the difficulty of focus which does impact me regularly. I’ve decided to contact my FMD specialist to double check his thinking and seek the thoughts of those in the Whooshers community to see if I should send my CAT scan and MRI images for a review by a PT specialist. I don’t think there are any in my state, though, so that would be a big ordeal. “There’s little consensus at the moment on which tests are suitable for which populations,” Dr. Brant says, Penn Medicine. “Which complicates things somewhat, because we need to both ensure we’re not missing anything and that we’re not over-testing.”

If you are experiencing pulsatile tinnitus, it definitely is something to be taken seriously and to get a full investigation into the cause. Know that many doctors don’t know much about it, so you may want to push to see a PT specialist.

Pulsatile Tinnitus Resources:


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Image of head/neck imaging in multi-color, an explosion coming from the neck. Title in black and red block font

Defusing the Bomb: Fibromuscular Dysplasia Doctor’s Appointment

I showed up a bit early for my first appointment the Fibromuscular Dysplasia (FMD) specialist, Dr. James Froehlich. I had found him through an online FMD group on Inspire.com and Facebook. I wasn’t quite sure what to expect out of our meeting as I had already seen a neurologist about this new and out-of-the-blue diagnosis. Read about that less than stellar experience in my post: Dealing with a New Chronic Illness Diagnosis.

Me wearing a red mask and orange sweater, sitting in a spacious waiting room at the Michigan Cardiology Center.
I’m a bit early for my appointment at the Michigan Frankel Cardiology Center of Ann Arbor.

Apprehension Builds

Going to bed the night before, I had thought I was feeling pretty calm about it all. I went to bed early because we had to leave the house by 7:30am the next morning (my normal rise-and-shine time). However, I tossed and turned, rolling on myofascial release balls because deep muscle pain turned on just as I was planning to close my eyes. My husband, Kelley, had fallen asleep and was snoring loudly, adding to my agitation. Once asleep, my mind created a wild, unsettling soap opera of love and loneliness, leaving me sniffling as I woke up just before our alarm went off. I don’t remember the specific events that happened, but I remember the heartbroken-feeling I had from Dream-husband telling me that he wanted a divorce. Although Kel asked what was wrong as we began to get around, I chose to brood on my feelings of betrayal and loneliness. The feeling lingered as I got dressed and grabbed a bit of breakfast before sinking into the passenger-side seat of our car. I finally told him on our drive. He said, “Well, it shouldn’t be making you sad any more, right?.” Logical. But, yes, Kelley, it was still making me sad.

All Alone

He dropped me off at the entrance, being Michigan Cardiology Center wasn’t allowing guests to accompany due to COVID-19 safety protocol. As I sat in the airy, naturally lit waiting area, I realized that I was, in fact, very nervous for the upcoming meeting. When the patient pager the receptionist had handed me went off, I startled, and it rolled onto the floor. Scrambling to get my coat, bag, papers I’d been reading, and the buzzer that had rolled under a nearby chair, I stood up flushed to greet the intake nurse.

Thanks to the compatibility of online health portals, I was able to link my records to the MCC portal so that they were able to see everything but the actual Head/neck CAT scan, brain MRI, and renal artery ultrasound the neurologist had requested. Melissa, the intake nurse, didn’t have much she needed to do because I had filled in all the information via their online check-in system. However, she still had to take my blood pressure, pulse, weight, and double check my list of medications. “Your blood pressure is 142/78. I’m going to take it from the other side, too.” I commented on how I’ve been having up and down readings. She said, wisely, “It’s probably higher because you’re here.” My other arm was 152/80…;)

Can You Fall in Love with Your Doctors at First Visit?

I sat in the examination room for just a few minutes. I was trying to get a text off to my friend I had planned on connecting with the night before or the drive over but was interrupted by a young doctor who introduced himself as Dr. Henry Han, a resident-in-training under Dr. Froehlich. Due to his mask, I could only see his eyes. Right away, I felt welcomed and at ease.

I had been thinking that I was seeing a cardiologist who specialized in FMD. Dr. Han explained that he and Dr. Froehlich are in fact vascular system specialists and Fibromuscular Dysplasia was a big part of their practice. He said, “In fact, we’re seeing two other patients with FMD just today.” He went on to explain that Dr. Froehlich actually runs the FMD registry, and even though there’s still a lot to learn about FMD, he’s one of the few as experienced as can be.

Dr. Han, spent 1 1/2 hours with me! He answered all my questions, thoroughly took my story, looked at my information, and then listened from head to foot to my vascular system. Then, he and Dr. Froehlich came in and talked to me for another 30 minutes, reviewing my story and developing a plan. I felt overwhelmed with the time that they took with me. My friend, whom I called after the two-hour appointment pointed out that, “They probably want to get all the details down so that doctors can use it as a part of their learning from the FMD Registry.” That makes sense since both of them told me that most of what they’ve learned about this disease and treatment protocols has come from the registry.

Recording of Pulsatile Tinnitus

Click to listen to what I hear nearly all the time.

From Whooshing to Time Bomb

My neurologist warned me not to lift more than 30 lbs, meaning I could not lift my granddaughter any more or even do down dog in yoga. He had said that I had to avoid chiropractor maneuvers on my neck (which I had been doing weekly prior to the first lockdown) or massaging my neck (again something I’ve done nearly daily since developing Fibromyalgia). There were several other specific no-nos, all on the theme of not distorting or jerking my neck. A few days after my visit with the neurologist, Kelley and I were walking in the wooded trails near our house. I tripped on a root in the path and fell forward onto my knees and hands hard, jerking my head backward. Rolling over in the dirt, I laid there and ugly-cried. Kelley, worried I was hurt more than it had seemed, bent down to check on me. “I’m okay, just jangled. I’m not suppose to move my neck like that!” I sobbed. It was pure fear that burst forth from a place I hadn’t realized I’d been harboring since leaving the neuro’s office. It came to me then that I felt like I had a time bomb just waiting to be ignited logged in both sides of my neck.

Can’t Stop Living Due to Fear

Kelley helped me up and reminded me that I can’t stop living because I’m afraid I might die. “I had to decide that after I had my heart attack,” he explained. Something that he had never said out loud to me before in the 10 years since it happened. It was then, that I decided I had to make some changes in my daily activities, including contacting my first yoga teacher for individualized yoga routines that would fit with my new limitations.

Image of a clipart bomb glowing red as if by a light.
I left the appointment feeling like the time bomb in my neck had been diffused.

I’m Going to Be All Right

But Dr. Han and Dr. Froehlich have diffused the feeling of the neck bomb. Some important takeaways I have from our thorough discussion are 1. FMD isn’t a progressive disease; 2. It isn’t helped by any medicine and even surgery (which would be dangerous) isn’t apt to fix it. 3. It is a small percentage of those with FMD that actually end up having dissection or aneurysm.

1. Not a Progressive Disease

Doctors don’t fully understand how and why the Fibromuscular Dysplasia occurs. Genetics could be the main cause. It’s considered a rare disease, but as they explained to me, it may actually be undiagnosed in more people. FMD is found in two ways: after an event such as a stroke, cardiac dissection, or aneurysm or when looking for something else. The majority is the later. The typical newly diagnosed FMD patient is female (9/10 patients), 50-60 years old, and having no known symptoms of FMD. As in my case, I had 10+ years of living with the wooshing of my heart beat (pulsatile tinnitus) in my ears. After asking to get it checked out because while it’s fairly common, it can be due to something more sinister going on, I ended up getting a CAT scan of my head and neck to rule out any tumor or other cause. That’s when they spotted the beaded section in both of my carotid arteries. Being I could have had this since I was an infant without any symptoms other than the pulsatile tinnitus, Dr. Han said it’s pretty likely I will live my life without any issue related to the FMD.

Image of clipart drawing of a dissected artery showing the layers with a white squiggly arrow pointing to the middle layer that can develop FMD growth.
The middle layer is where FMD growth can occur.

2. Medicine or Surgery Won’t Help (Most Likely)

Because the inner wall of the artery has overgrown, medicine for blood pressure or cholesterol will not fix the narrowing. If I were to develop high-blood pressure (which I am on the verge) or cholesterol numbers that need to be brought down, then it would stand to reason that treating these issues would be even more important in someone like me who already has a section of artery in which my blood is working harder than normal to get through. The one medication that Dr. Han has said I should be on (which I started when my doctor first told me of the diagnosis) is low dose aspirin. It can’t hurt.

Surgery is an option, but Dr. Han said it would be a last resort type of thing, say if I had a stroke, heart attack, or kidney failure. However, surgery on main arteries to the brain, heart, stomach, and kidneys is a tremendously dangerous proposition, and the results just aren’t guaranteed to “straighten out” the situation. No worries; I’m not looking for any more surgeries!

3. It’s Not Common to have Life Threatening Events due to FMD

The smaller percentage of patients (usually younger women) with FMD that are diagnosed due to a dissection or aneurysm have a really hard row. However, I’ve read about many who, in my mind, have miraculously come through surgery and are living their lives the best they can. Many talk about being somewhat careful, but like Kelley had advised, have decided not to give up on doing life as they see fit: running, practicing yoga, etc. Dr. Han and Froehlich emphasized to me that being I’m not having any serious symptoms and haven’t ever smoked tobacco, the likelihood of me having a serious event is a low percentage. They alluded to a new (9/2020) study that is focused on genetics, FMD, and SCAD. “As a physician caring for patients with both FMD and SCAD, it is gratifying to see results from our research that are beginning to uncover the genetic architecture and risk for these diseases about which so little is known,” Ganesh says. “This unbiased and large-scale analysis has provided us with new clues for where to focus our next steps of research, which is urgently needed. We are grateful for the participation of our patients, without whom these studies and new insights would not be possible,” states researcher, Santhi Kalaichelvi Ganesh MD in her recent lab report on women and heart attack. The one thing Dr. Froehlich told me to avoid is anything that causes whiplash: roller coasters, bungee jumping, sky diving, car crashes, and the like. No problem because I’ve never been one to want to do those anyhow.

Scanning the Entire Body

I still have to get one more CAT scan on January 18th of my torso (heart, stomach, intestines, kidney) to see if there’s FMD or aneurism. But from what I’ve explained and Dr. Han’s listening to my vascular system from head-to-toe manually, he doesn’t think they will find anything. I feel so much lighter since our talk and that whooshing in my ears is just a minor annoyance once again. I’m so thankful to have such knowledgeable, caring doctors added to my health team.

Image of person upside down attached at the ankles by a bungee cord-orange sunset background.
Bungee jumping never has been a life choice for me, so I’m fine giving it up:)

There’s a lot to learn about Fibromuscular Dysplasia. Like all other diseases, it impacts everyone uniquely. My best suggestions are: 1. Get a doctor who specializes in FMD (vascular system health); 2. Get on the registry (there are only 15 places in the USA); and 3. Start on a low-dose aspirin if your doctor approves.

Here are some great resources to help you find more info:

Fibromuscular Dysplasia: What we have learned in the last 10 Years. Presented by Dr. Jeffrey Olin. Hosted by FMDSA and Pamela Mace, RN. November 30, 2020.

Are you living with a rare condition? Perhaps FMD? What has been your experience dealing with doctors?



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We’re Together In This: 2021

Blue square with gold sunbursts, squiggles, dashes, and lines decorating the lower and right sides. The title in the upper left corner in white font.

On Monday, January 4th, my husband and I will get up early to drive the three and a half hours to Ann Arbor for my first appointment with a cardiologist who specializes in Fibromuscular Dysplasia (FMD). At this point, we know that I have the telltale beading in both of my carotid arteries, but it can be found in any artery of the body. I had an ultrasound of my renal arteries and there was no indication of it being present there. Seeing this doctor, especially since he’s come highly recommended by several FMD patients who live in Michigan has been reassuring.

As the day looms closer, I’m getting anxious. How will it go? Will he take me seriously? Will the trip be worth it? Will he find out even more scariness? Truly, I would like to stay home, but I know I have to follow through or the unanswered questions will hang heavy over my head. This is much like my feelings about the new year. I’ve been hanging on, reassuring myself that it has to get better. Hanging on, knowing that I can only do this for so much longer before I JUST CAN’T anymore. I know I’m not alone in this. I will be using January 2021 prompts from A Chronic Voice: Beginning, Symbolizing, Enduring and Revealing to capture my hopes and angst for this coming new year. 

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Beginning

Last January started out like most for me. Yes, I was struggling with the transition from working full-time to retirement while handling the daily ups and downs of living with chronic illness, but, like pretty much everyone else in the world, I wasn’t expecting what was coming in just a few months time.

For me and my family, it was Friday, March 13th. That was the day that our state’s governor closed schools and ordered that we stay home. I’ve been home pretty much ever since. I’ll be honest, I really haven’t felt too inconvenienced or closed in until this November. I know, I’m really “fortunate”- chalk it up to the benefits of living with Fibromyalgia that put me at home 24/7 two years ago, December 7th. I had worked out a lot of my need for “getting out” and “seeing people” well before the pandemic bomb dropped.

I looked at my last year’s post and smile at its normal goals. All I thought I needed was to develop a daily schedule to keep me motivated and moving in a good direction. It was good that I worked on developing a routine. In fact, reworking my morning routine last month has helped me to have better than average days pretty consistently this past month. But, I’ve really let go the idea that I need to schedule every moment of my day/week like I had been used to when I taught. This is a gift of retirement and of the pandemic.

  1. New Year Resolution: Planning to Live PurposeFULLY
  2. Hats Off to Teachers: A New Kind of Stress
  3. Dealing With a New Diagnosis
  4. Traveling Across the US in the Time of COVID-19
  5. Seven Ways Living with Chronic Illness is More Difficult During a Pandemic
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Symbolizing

Thinking of a symbol that represents my vision of 2021, two opposing images come to mind. One, is the symbol I have come to use as my personal symbol, the water lily. The other is a ticking time bomb. Let me explain.

As explained in my blog bio, I ended up getting it tattooed on my left inner arm after my first year of living with Fibromyalgia.

A photo of my inner left lower arm with the purple and aqua outline of a water lily symbol.
This tattoo reminds me daily to get up and live life as FULLY as I can that day.

This flower has meant a great deal to me nearly all my life. I grew up on a Michigan fresh water, inland lake, swimming is one of my favorite things to do (especially in a lake). The water lily was always so pristine and beautiful, but when I stepped down in the areas where it was growing my feet would sink into the sludgy muck it rose from. When I first found out I had Fibromyalgia, I was really low. It had sidelined me from my life, leaving me in bed, whimpering most days. However, after a year of wonderful guidance, luck, as well as family and friend support, I began to rise out of that painful mire and realized that I could recreate myself and live a FULL life of passion, love, and hope.

Click to listen to what I hear ALL the time, but especially when I’m trying to go to sleep.

However, with the constant thrumming/whooshing of my heart beat in my ears and the new diagnosis of FMD in both carotid arteries, one symbol that keeps popping to mind is that of a ticking time bomb. This one comes from fear and causes me to want to freeze where I am and not risk anything. This symbol I have to reject again and again because if allowed to take root in my belief system, it will stop me from living with any sense of joy or passion.

  1. Choose to Make Every Day a New Start
  2. Confession: I’m Not Well Today
  3. Times They Are a-Changin’
  4. Wooshers.com (Help for those with Pulsatile Tinnitus)
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Enduring

We are all enduring this time of the pandemic. It is hard to really encompass that the entire world is being affected by this at the same time. Regularly, I talk to friends living with chronic illness in Oregon, Belgium, New Jersey, England, New Hampshire, Singapore, and Bangladesh. It amazes me at the commonalities of our situations. We are enduring the ignorance of those unwilling to wear a mask to protect fellow citizens. Or comments like, just have those “most at risk” isolate themselves so we can go on with our lives. We all have loved ones we’re missing out on seeing and our concern that our governments aren’t able to do what needs to be done to protect us. Restlessness and uncertainty is in every corner of the world. Many of us are mourning the loss of those we loved due to COVID-19, other illness, and even from choosing that life is just too hard.

With this commonality of experiences, we know we’re understood when we complain about how a certain restaurant has disregarded any safety measures, or how we feel so cramped living with our parents, or how scary it is to go for a run when surrounded by others. That understanding is like a soft hug. And because of this, each of us is strengthened.

Blue square with gold sunbursts, squiggles, dashes, and lines decorating the lower and right sides. The quote in the upper left corner in white font.

Revealing

For me, 2020 gave me some major surprising revelations. I found out I had a new rare disease that probably has been there all my life. (They call it rare because of the known numbers. Doctors suspect it’s more common, just undiscovered until it’s too late-fatal stroke/heart attack, etc.) Had I not been insistent on checking out the pulsatile tinnitus that I have had for over 10 years, leading to the CAT scan of my head, it would still be unknown.

I found my birth father just a couple of weeks ago. How? My husband had suggested that I do the DNA tests that are out there because I’ve always felt bad that I couldn’t fill in the health info for my father’s side and with that, I couldn’t give any information to my own children. I ended up going through 23andme.com and Ancestry.com. When I was 12, my mom sat me down to tell me the story of my father. From that time, I have thought about it a few times. Because I look a lot like my mom and grandmother, I just never really felt like I didn’t know where I came from.

I’ve been surprised at my reaction at the revelation. Just knowing his name and a bit about him has somehow made me feel a bit more grounded. I had always thought that my white hair was due to my own maternal grandfather being all white by the age of 18. However, I found out that my father was all silver at age 30. I got a chance to see a couple of photos of him and of my 80-year-old half-sister. I see some resemblance (especially in the shape of my face). I was able to talk to my half-sister (who had also done 23andme.com DNA test which is how I found her), and she explained that my father was very active and healthy until the end of his long life. Somehow that’s revealed new determination in me.

Image of me smiling, showing my all white hair.
I come by my white hair naturally
and I’ve come to love it:)

A new revelation has been that I can be more physically active. My husband and I have always been fairly active; we love most outdoor activities. Since my Fibromyalgia diagnosis and even more since my FMD diagnosis, I have felt less and less able to do the activity levels and activities of my past. These past 3 weeks, with doing my new morning routine consistently, I’m feeling more energetic and clear headed on a daily basis. I’m still having to pace (meaning taking breaks and adjusting the activity I do- from higher intensity to lower from standing to sitting to laying, etc), but I’m doing so much better. Dare I hope that I’m moving in a positive direction. Oh, 2021 my hope is in you.

Finding contentment and appreciation in the small things of this life is a new revelation. I’ve spent so much of my life striving for the next thing, the next accomplishment, the next purchase, the next experience. But, this time of being required to be at home nearly all the time has revealed that I can be perfectly content with all that I am here and now.

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GRACING

To me “gracing” means to give thanks for all that this life entails. It’s not as easy as it looks at first glance. It requires deep acceptance of our human condition. I truly am thankful for the journey I’ve taken to get to the place I am today. All my eperiences -the sadness, the joyfilled moments, the fear, the quite, all of them-have grown me into a better human.

Gracing means to extend patience, forgiveness, and understanding to my fellow humans. I’m going to be honest, this year has made this harder for me than ever before. I’ve had the stance that we all are doing the best we can with what we have, and with that, we need to give each other grace. I’m never going to understand the choices of some, but I can honor that they are fellow humans, living this life in the best way they can see their way through, just as I am. We are in this life on earth together.

Gracing means acknowledging the creator, whatever that may mean to you. I choose to put my faith that there is meaning in each moment of our lives. I experience this whenever I take time to notice the sacred in the ordinary events of my day. I’m working on being present and taking time to relish each person in my life, being cognizant of what I fill my day, and the beauty of nature. Yesterday, I had two long conversations with friends I hadn’t talked with in over a month. It wasn’t a part of my day’s plan. In the past, I often felt like that was a waste of time, stopping me from “getting the things done”. Now, I see it as a very meaningful part of my day, giving my full attention to the nuances of our words. I regret how often I had the same attitude with my own children when they were growing up. I now am working to repair those times I was vacant when they were telling me important things from their day, thinking about something I needed to get done.

Gracing means to notice how I take care of myself. Noticing how I move (being conscious of my posture, how I’m walking, how I’m sitting). Noticing how I’m breathing, working to breath slowly, through my nose, using my diaphragm. Putting grace into each space of our home by organizing, simplifying, keeping only the things that bring joy and peace; and then, taking time to actually appreciate them. Nourishing my body with food that makes me feel cared for, pampered, fulfilled. Slowly, I’m getting back into cooking. In the next 8-weeks, I’m going gluten-free because so many with Fibromyalgia have found that it’s made positive impacts on their level of pain and other secondary issues the illness brings.

I see that with each of us doing things that bring grace to others and ourselves, we indeed will be we will bring the GRACE down to this earth which is so needed for this new year. May you have a year full of grace.

My daughter and I watched the movie SOUL the other night. If you haven’t yet seen it, I highly recommend watching it with your loved ones. It could spur on some wonderful conversation. One of my favorite quotes (there are several):

https://www.cnn.com/2020/12/24/entertainment/soul-review/index.html

Lost souls are obsessed by something that disconnects them from life.’ – Moonwind

Disney & Pixar’s Soul

I fully believe that if we connect, in all the meaningful ways, we will see our hopes for 2021 realized. We are all in this together. Let’s do this!

Blue square with gold sunbursts, squiggles, dashes, and lines decorating the lower and right sides. The quote in the upper left corner in white font.

The format for this post is thanks to A Chronic Voice linkup. This month, the topics were Beginning, Symbolizing, Enduring and Revealing. Each writer takes the given topics and gives them their own spin. Check out these wonderful writers at January 2021 Linkup (scroll past the prompts to find the linked up posts).


teal line drawn waterlily with teal lettering of the title and motto

Dealing with a New Chronic Illness Diagnosis

Dealing with a New Chronic Illness Diagnosis

Multi-colored background with an image of a carotid artery with FMD; the title text is in dark blue font: Dealing with a New Diagnosis: Fibromuscular Dysplasia Below the title is the website painfullyliving.com and with the waterlily above it.

When I received the diagnosis of Fibromyalgia in November of 2018, I was actually relieved. It helped to explain the issues I was having and gave me, then, a pathway for learning to manage it. Also, it ruled out life-threatening diseases, such as cancer through all the testing needed to rule out everything else. While Fibromyalgia is a life-changer, it does not in itself cause damage to the body and is not considered fatal. This new diagnosis of a rare disease that is damaging the lining of my arteries and can lead to stroke and heart attacks is not one that I was prepared for when I visited my ENT about the whooshing sound I’ve had in my ears for the last 15 or so years.

Related Posts on FMS Diagnosis

1st Specialist Visit: Otolaryngologist (Ear Nose Throat Doctor)

I had asked my primary care physician (PCP) if he would refer me to an ENT to check into the bruit (a whooshing or heartbeat sound) that I constantly have playing in my ears. Over the past 15+ years, I have mentioned this issue to my doctors, but after listening to the back of my neck, they just shrugged and really didn’t say much about it. After finding that it had a name (through discussion in one of the Fibromyalgia groups I belong to), I looked up what may cause Pulsatile Tinnitus. And while the reading I did say that it was pretty common, it also said it could have more serious reasons behind it: an aneurysm, increased pressure in the brain, and hardening of the arteries, among some other scary things. I was going out of the mentality of “just checking”, never thinking it would be anything of issue.

My visit with the ENT was difficult for me. I think, just me guessing here, that he thought I wanted him to stop the annoying sound that has kept rhythm to my life day in and day out for so long. After checking my hearing and other possible issues, he met with me to tell me the results. “You hear like you’re a teenager and there are no other problems that would be the cause of the pulsatile tinnitus.” He then, read my chart closer, and brought up Fibromyalgia. In the course of our talk, he brought up going for therapy three times. Of course, he had no idea that I have (and believe it to be helpful for people living with chronic pain and/or chronic illness), but the way he said it made me feel silly for coming to see him about the issue in the first place. As I prepared to leave, he did say that he was going to recommend I have a CAT scan with contrast of my head, “Just to rule out all issues.”

I’ve gotten quite hesitant about any medical procedures, so after setting up the appointment, I actually messaged him and said, “If you really don’t think that this is anything to be concerned about, I would rather not have the CAT scan.” His reply is that he thought it would be best if I went through with it so that we could be sure. And so, I did.

A few days later, I received a phone call from him. He let me know that the imaging showed that I had Fibromuscular Dysplasia (FMD) in my carotid arteries and that he had let my PCP know who would most likely follow up with some referrals to get it checked into. Of course, that led me to get on the computer to find out what FMD was. I quickly found some very helpful resources, but also found out that this was not only a rare disease but one that was life-threatening.

Here’s a very helpful explanation of FMD:

Fibromuscular Dysplasia, commonly called FMD, is a disease that causes one or more arteries in the body to have abnormal cell development in the artery wall. As a result, areas of narrowing (called stenosis), aneurysms, or tears (called dissections) may occur.  If narrowing or a tear causes a decrease in blood flow through the artery, symptoms may result. Many people with FMD do not have any symptoms or signs on physical examination and are diagnosed by accident during a radiology scan for another problem.

FMDSA Welcome Page

2nd Specialist Visit: Neurosurgeon

My primary care doctor referred me to a neurosurgeon and neurologist, in no particular order. So, when they called, I made the first available appointment for each one. The neurosurgeon was available first, a full two months before the neurologist had an opening. So, I went, not knowing at all what this appointment meant and what it would do for me.

I’m thankful to have found a couple of helpful groups to get more knowledge before going to the appointment, but I wasn’t quite prepared for how he received me. His first question after looking at my chart was, “Why are you seeing me?” Well, I pointed out, my GP made the referrals and he was the first to have an opening (I didn’t know any better). Again, I got the sense that he thought I wanted surgery to eliminate the Pulsatile Tinnitus. Ah no! I don’t want any unesscessary surgery near my brain!

He proceeded to barely check me out or ask me questions. He told me that I definitely had FMD in both of my carotid arteries, but since I have FM, IC, and the Nissen procedure for GERD 15-years ago, there really wasn’t necessary to check to see if I have it elsewhere in my body at this time. I sheepishly agreed with him. Again, I’m not wanting medical tests just to have tests. Not only are they costly but they are scary, especially during the time of the COVID-19 Pandemic. I left with the directions to see the neurologist, who he thought would agree with his thoughts on no further testing needed and to take a daily low dose aspirin (which I had already started the month prior).

A multi-color background with a list of some of the FMD symptoms (Text in white): Bruit/Pulsatile Tinitus
Pain in the neck
Headaches/Dizziness
Stomach pain after eating
High-blood pressure
Stroke/Heart attack due to SCAD  
Many go undiagnosed due to having no symptoms

3rd Specialist Visit: Neurologist

This time I was more prepared with a list of questions and issues I’m having. My main goal was to find out if I have it elsewhere in my body (for monitoring purposes) and find out what preventative measures I need to implement. This doctor did take more time with me and asked quite a few questions. He also did some physical checks having me push up with my arms, move my eyes around, walk in a straight line, etc. He was pretty matter-of-fact, but I felt that he was making sure to check into everything. At the end of our appointment, he noted concern about my fairly sudden increase in my blood pressure which, as he explained, can be a sign that I may have it in my renal (kidney) arteries. And so this coming few weeks, I am having a redo of the initial CAT scan with contrast because he wants to have it from the shoulders up, not of just the head as was done the first time. Then, an MRI of my brain “in case you have a stroke we want to have a baseline”, and an ultrasound of my kidneys to see if I have it there as well. He’s suggested that my PCP refer me to a cardiologist to check into the heart pain I have that is to the left of my sternum (breast level) which I’ve had since I was a teen and have always equated it with my body’s way of showing I’m stressed/anxious. It could be a sign I have it in the arteries of the heart.

I left the appointment knowing that there wasn’t any mistake that I have the beaded form of FMD on both of my carotid arteries, and because of this, I am to continue taking the low dose aspirin every day. However, his parting words ended up making me feel like I had a time bomb in my neck. He told me not to massage it, have a chiropractic adjustment of the neck, put weight on my neck, or move it quickly out of its alignment because I could cause dissection of the artery. What is dissection? A tear!

Multi-colored background with a yellow clipart bomb lit on a tan clipart brain ;under in dark blue font painfullyliving.com with the waterlily logo above it.

My Initial Reaction

In the office, I was calm and matter-of-fact like the doctor. However, once I got into the car with my husband and began to explain what I learned and what I was to do, I began to cry. I could feel the anxiety welling up in me. My neck, which normally has pain in it seemed all of a sudden more prominent. As I told Kelley what the doctor said about taking care of my neck, I really felt panicked. The past two years, I had done pretty much everything he had told me not to do to my neck.

When I was first diagnosed with Fibromyalgia, I had most of my pain in my shoulders and neck area. The summer I spent in physical therapy focused a lot of stretches in that area. I had gone to a chiropractor several times, each time my neck was jerked one way and the other. In yoga, I had extended my neck back and down. I did self-massage directly on my neck with my massage gun, generally on the highest level. All I could think of (and almost viscerally feel) was a ticking (coinciding with the heartbeat in my ears) time bomb ready to cause a stroke or worse.

That was seven days ago. Luckily, I had my EMDR therapy appointment that next morning. I have just started back after the initial pandemic lockdown. Then, some extra support from the Healing Circles group leader, Elaine Merryfield, through her Healing Messages cards she sent me. And on Friday, I had my first health counseling appointment with a fellow Michigander, Sharon Waldrop, who has lived with Fibromyalgia for 20+ years and has recently finished her training for wellness counselor.

In addition, I have done more research and have taken some steps to help me feel a bit more settled about having Fibromuscular Dysplasia. I know it’s a serious issue, but I also know that many live with it well into old age without having any issues. Through an online group, I’ve gotten more questions answered and have even found a doctor in Michigan that specializes in FMD. To my surprise, I was able to get an appointment with him in early January.

I know that dealing with this new diagnosis will be much like the process I went through in accepting and living with Fibromyalgia. I know there will be ups and downs, but overall, I know that I have the tools to continue living my life FULLY despite the disease.

How to Handle a New Diagnosis

  • Learn as much as you can: Finding reliable resources and learning about my illnesses has given me the needed information to impact the handling of my diagnoses. It helps me to have realistic expectations.
  • Take responsibility for your own care. I had always taken doctor’s directions as gospel, but what I have learned from having Fibromyalgia is that doctors aren’t able to know everything. One article I read explained that there are so many diseases/syndromes/illnesses/issues out there that it’s impossible to think one person would know everything about everything- that’s why it’s called practicing medicine. So, I now view my doctor more as a teammate. I sometimes give ideas (through my research) to him/her. I’ve developed trust in them and from them so that I have actually introduced new treatment ideas that they have said they’ll use with future patients who have the same issue.
  • Know your body. Make sure you keep track of symptoms and any other data that would be helpful for deciding treatment options. I do struggle with this one, but I have a few things that I use that have made me be a bit more diligent in keeping records. 1. The app DAILYo is where I keep track of my mood, symptoms, activities, weather, and medication at least one time per day. I can see a variety of reports easily. 2. Google Keep-I keep any questions that come up and even links to research articles to read or share. 3. My Health is an app that I have on my phone; it’s an online system that Spectrum Health care uses to communicate with patients. I can see appointments, message my doctors, order meds, see test results, etc. 4. Fit Bit: Right now I’m mainly monitoring my sleep quality with this.
  • Build a support team. This includes any experts in the area of your diagnosis. I have not only my PCP, but some specialists. I try to keep them all in the same network or at least able to communicate with one another. I also look to online groups who have both medical specialists and those living with the same chronic illness as me. This is probably where I have found the majority of helpful ideas for self-care and treatments that work.
  • Make a plan. My plan involves evolving self-care/treatment protocols. But, a plan won’t work unless it is faithfully followed.
  • Reach out for support. It’s easy to get caught up in wallowing in what isn’t pleasant news. Depression is a common occurrence in those living with chronic illness. For me, I’m seeking therapy and have a monthly meeting with a small support group for encouragement and help with developing healing self-care. I also am open with my husband who has been a major source of comfort. He is understanding; however, he also is great at pushing me to be active and making me laugh when I need it. I’ve also shared how I am with my sister and friends who are quick to give me a hug or want to talk (made a bit more difficult in the area of the Corona Virus). And finally, writing. There’s just something in it that helps me process things.
  • Live as FULLY as you can within the parameters of your chronic illness. Due to FMD, I won’t be skydiving. Never really wanted to anyhow. But I can get out in nature for walks, kayaks, and even X-country skiing. I can play make-believe with my granddaughter. I can have pamper-night with my daughter where we do facials, our nails, and watch JULIE AND THE PHANTOMS. I can create: writing, playing music, and doing crafts. Focusing on what I can’t isn’t helpful; focus on what I can and then go forth living.

Focusing on what I can’t isn’t helpful; focus on what I can and then go forth living.

Dealing with a New Diagnosis-katie Clark

What has helped you to deal with your diagnosis? What have you found to be detrimental? I will be sharing more about my journey with Fibromuscular Dysplasia as time goes on. This week, I have the head/shoulders CT w/contrast.



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