Cause of Tinnitus Diagnosed (Fibromuscular Dysplasia of Carodid Artery)

Hello everyone! It's been a while since I last updated but I wanted to let you all know that after having tinnitus for over a year and a half now and demanding an MRI (in September) I was diagnosed with a brain bleed. So, as most of you know I have been following up with a neurologist and I finally agreed to have a cerebral angiogram done this month to try and diagnose the cause of my bleeding.

The angiogram was done on 6/5 and I got the results three weeks ago.. I was diagnosed with fibromuscular dysplasia of my carodid artery which is a connective tissue disorder that causes issues with my blood vessels. Symptoms are dizziness, headaches and... TINNITUS. So there you have it ladies and gentleman.

After fighting for nearly two years I have a diagnoses that explains my tinnitus.. the complications for the condition are Aneurisms and dissections of arteries as well as strokes. They believe I've already had 1 aneurism which is what caused my initial brain bleed.

I have been put on aspirin low dose (81 mg, to reduce risk of strokes) a day as well as a nerve pain medication. I just recently started the aspirin after several weeks of holding off because I was afraid about the ototoxicity. I decided better to have tinnitus than a stroke or another aneurism right? But after only taking the aspirin two days, I notice an increase in my T 2-4 hours after the dose.. I plan to give it a week and if this continues, to call my dr and ask for a different drug like plavix which the audiologist preferred over aspirin as it is a known toxic drug..

I just wanted to reach out to you all and let you know I finally had a diagnoses to explain my weird symptoms and my tinnitus and let you guys know to never stop fighting for your health and a diagnoses. Had I stopped fighting, I may have never got a diagnoses and would have been at a huge risk of life threatening complications.. had I accepted my T was just from hearing loss, I wouldn't know I needed to be monitored and treated for this condition.. so, trust in yourself and don't give up..

I also wanted to ask if any of you had any experience with aspirin use? My t seems to go down the next day after a dose but spikes 2-4 hours after taking it. I don't want to cause permenant damage and from my research it's rarely permenant in short term and low doses like what I am taking but it's hard not to be nervous.

I also wanted to let you all know that I have been managing my t better and better every day (with the exception of starting aspirin) and that it is possible to live a normal life with tinnitus.. listen to your body! Tinnitus is a symptom of something else.. and in some cases, like mine it can actually be something serious.. the tinnitus led me to find my brain bleed and subsequent FMD.. don't blow it off if you feel something is wrong because sometimes, there truly is something wrong.. granted, oftentimes T is just T but listen to your body! Be your own health care advocate!

 

@Natalie Roberts hi Natalie. Thanks for the update. So, what are they going to do about your condition?. I actually had some type of mri scan done recently ...ordered by a neuroligist. Saw him 2 weeks ago for a follow-up. He didnt get into too much detail as he thinks he is Mr know it all and does not let me speak haha. He said I have an aneurysm in the brain which could posdibly rupture. He made an appointment for me to see a neurosurgeon next month to get another opinion.

Nice to see you again. Hope all will turn out fine for you.

 

It's wonderful that you were able to be an advocate for your health and got a diagnosis, though I'm sure that diagnosis comes with an assortment of concerns too.

Did you have an MRI early on? Was this a second one? That was the first thing my ENT ordered after seeing my audiogram.

I'm currently wrapping up the diagnosis process. Given my sudden hearing loss and some other odd heath problems, like you, I didn't want to just assume everything was okay.

 

Absolutely! I always tell people that, especially in here. Nobody has the incentive that you have to figure out what is wrong with you. You have to keep pushing forward, and challenge doctors as needed.

Glad you reached a diagnosis, even though it may not be perceived as good news. But now that you know, you can at least devise an actionable plan to deal with it.

Good for you. I'm happy for you.

 

So I will be on blood thinners for the rest of my life and have to have MRI/MRAs every year to monitor my arteries for signs of aneurisms and dissections before they become serious . The condition is progressive so it will be more serious as I age but chances are I can live a normal life as long as I take my medicine and follow up regularly with the dr. I know my carodid artery is affected, possibly my femoral as well and they are doing another mra in this month to check my kidney arteries as those are commonly affected as well. I'm glad you pushed for a diagnoses as well! I'm surprised they are making you wait a month to see neurosurgeon though that is pretty scary!

 

No my tinnitus started in October of 15 when I was pregnant so I didn't do an MRI until Sept of 16 after I had delivered and the tinnitus wasn't getting better. They found the area of bleeding and sent me to a neurosurgeon . We went back and forth on diagnoses and finally they ordered an angiogram but I put it off for several
Months because it was very invasive and I was scared. Got that done finally last month and that is what showed my FMD in my arteries but it wasn't visbole in the normal MRIS And CT scans. So it has been a long road to a diagnoses, almost two years already. I hope you are able to push and get answers for yourself . I also have mild hearing loss in addition to t and I am only 32.. I had to fight for the first MRI and visited several Dr before they agreed to do one..

 

Thank you Greg! I absolutely had to fight for this. I've seen quite a few Dr over the past 2 years since My tinnitus started and finally got someone to listen . My neurologist now is a stroke neurologist and he is amazing! He emails me back and takes a long time with me at my appointments explaining. I literally just got mt diagnoses two weeks ago.. I'm scared about the aspirin as I think it truly
May be worsening my T so I'm going to give it a week or so and if it continues I will call and ask for a different drug..

 

In terms of blood thinners you might consider nattokinase which is found on line or in some health food stores. Read up on it. Your doctor probably won't appove, but there is some decent research for it.

 

Thanks for this info. He basically gave me 3 options. Aspirin behind the best choice followed by plavix and then cumedin. Aspirin is the safest but not when you have hearing issues already. My ears are extremely sensitive after just two doses. But I have to wonder if it's just because I'm thinking about it again, you know? :-/

 

I know. I had to look into this myself due to similar concerns. I tried the low dose aspirin for about a week before going the alternative route due to believing my T was worsening.

 

What dose were you on? I seriously have only taken 2 doses of 81mg and am believing the same.. I know my dr said it was unlikely to cause it to worsen but not impossible.. did your t return to base after stopping to aspirin?

 

Thank you for sharing this! I have had multiple MRIs, MRAs and an MRV. The MRV possibly indicated a jugular vein concern, so I had an artery/vein CT scan. The CT came back okay, so we moved on to a third level of autoimmune testing. So far everything is normal. It's frustrating to not identify the possible cause of multiple concerns, but it's also reassuring to know that I'm leaving no stone unturned!

I saw a stroke neurologist, too. He is amazing! Very detailed, knowledgeable and patient -- always took his time to address my questions and even sought out colleagues to answer the questions he couldn't.

Thanks again for posting!

 

I've also had multiple CTs and a very detailed CT scan of my brain arteries specifically (probably what you had done) and it was not able to diagnose this. The only thing that was able to diagnose this was the cerebral angiogram which involved getting a catheter threaded through my femoral artery to my brain, injecting a dye and doing a CT scan along the way. It sounds like you too have left no stone unturned! When you know something is wrong, you just know.

Keep fighting for yourself!

 

81mg. Yes, the T returned to baseline after I stopped. I was pretty convinced I did not want to take blood thinners so I researched the natural products. There are many and it seems like natto was one of the chief ones that had some science backing it up.

 

Thanks for this information! The thought of daily blood thinners for the rest of my life is very scary.. especially with the potential worsening to auditory systems. I will research this natto.. What did you Dr say about it?

 

He preferred I do the aspirin but understood my reasons for not wanting to.

 

Natalie, please know that I am not suggesting you go against your docs advice. I am mentioning that there may be alternatives. However, you may want to consult with a naturopathic physician or Integrative Medical practitioner who understands this kind of thing more thoroughly than you are regular doctor likely does. For me, I chose a regimen that included a combination of supplements that would appear to provide similar benefits to low dose aspirin.

 

I appreciate the information!

 

You're welcome!

 

Hi Steve, what is that medicine?

 

@Natalie Roberts ,
Glad you got some answers and medication to help you and hope ok with your tinnitus.
Love to you and your family.
Love glynis x

 

Aspirin and T are certainly linked in some.

 

How was the cerebral angiogram? I need to have one done soon.

 

After being on the low dose aspirin for about 6 months I am getting off of it because I have noticed an increase in my overall tinnitus and it has been hard to deal with. I’ve been off of it maybe a week now, but my T is still a little higher than baseline. How long did it take yours to return to normal?

 

I opted for general anesthesia for my procedure because I was extremely nervous. The recovery was fine and overall, the procedure went well but my anxiety made it worse for me.