Here goes Something. My story I'll try to keep this short

Well, I have been dealing with pulsatile tinnitus /whoosh whoosh heartbeat sound in my ear for the last 6 years. I’m 36 , from south Louisiana and a mom of a younger child. The onset of this was sudden and I had an upper respiratory virus at the time. All my life I’ve had sinusitis infections and overactive bladder and major GI IBS C issues that have put me in the hospital at times. I also have chronic urticaria (hives) and was Dx with fibromyalgia and cervical spondylosis of the neck. Arthritis. All by age 31. Well. During the time of the sudden onset tinnitus, I saw an ENT. Was told had some fluid in ear so I expected another sinus infection. But he did a CT scan using contrast dye because he suspected vein abnormality since he could press my neck up high as if you are being choked and the sound would just go away. So, the dye shows an area the radiologist didn’t even pick up on (props to him) there’s an enlarged vein up by my left ear drum. Thump thump. That’s the sound. But why the head pain? I then saw a neurologist who treated me like I was crazy. He did an MRI and despite being shown the CT images to view the vein further he did it without contrast and said I had arthritis of the spine C1 to C7 areas and it’s all normal and be glad I don’t have MS and sent me on my way. Nice!! So here I am years later. In between shortly after the ENT and neuro this was all back in 2012 and I was 31 years old…I had a sinus culture which found enterobacter aerogenes in my hose an unusual bug. And also that I had recently fight with Epstein Barr…I was a mess. Then in 2013 I randomly couldn’t go to the bathroom and keep in mind this happend when I was pregnant too. Couldn’t urinate at all while pregnant. Well, the GI issue was ischemic colitis! !! I was having lack of blood flow to my lower colon. No one knew why and I was even sent to a hematologist for the" million dollar blood work up"…my red blood count or RDW in forget which one was up. …Dr said dehydration can cause it I’m too young for anything else. Blah blah blah. I then felt maybe they’re right and I am crazy. But then I read that red blood cell distribution width I think it was RDW goes up when you have a bleed. Or recovering from surgery which I was not. …doctors had no idea what to do and I discovered chiropractic which a different neurologist recommended I try so I did and it helped a lot with my back of the skull headaches. At this point I felt like I was on a road to recovery and I was doing the back adjustments up to a month ago when I noticed marked increase of my head pain and also the ear sounds changed from heartbeat sound to at times mainly when it hurts really bad…to a whirring\growling almost sound. Terrible. Impossible to ignore. I also found whooshers.com and listened to the various DAVF and AVMs that mimicked mine to a tee…so now I’ve called today my rheumatologist who always looks for the unknown causes and variables bless her. She listens to me. I asked them for a referral to the vein and stroke/neuroscience center a few hours away from me in New Orleans. I need a specialist who will take me seriously. I’m glad the ENT caught the vein but he suggested to tie off the vein in a minor surgical procedure or put me on blood thinners to drown outn the sound but I’m glad I didn’t do that.

Due to my risk of GI bleeding, as I’ve had bleeding from rectum before too, I’m advised to only do Tylenol for pain. Not much help. Unless I take it round the clock. Can’t even take the migraine meds. I find Vistaril, an old antihistamine helps me sleep. I’m also post surgical menopause. I had everything you can think of wrong with my uterus and tubed and ovaries and cervix short of cancer so hence the early c section. Since I’ve gone off My HRT. (Stupid expensive. 400 a month. That was when I had insurance. I’m unemployed and don’t have any insurance now at the moment ) …since getting off of the hrt patch I’ve noticed these headaches worse and the ear noise is louder…

Yet the hematologist back in 2012 said that HRT. Was a risk for bleeds of all kinds and to get off of it. Go figure. Just can’t win.

In the meantime I wait my referral to be accepted and an appointment so I can get a proper diagnosis but every DAVF of the transverse sinus or sigmoid sinus veins I have read sounds exactly like my symptoms. I’m lucky just short term memory issue’s and not being able to recall words and phrases etc like nouns for certain objects even if I am LOOKING right at them are what I have. Especially when the pain is bad.

I might add no one knew why i could not urinate despite major urge when about 4 months pregnant. 1300ml was drained from my poor bladder and I believe I could have vein issues. My rheumatologist again bless her, thought I had vasculitis…she says my Reynauds disease is Primary in nature.

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Amy!

Gosh! What a story! I hope you manage to avoid serious rain this week, otherwise you really are having a tough time!

You’ve mixed in AVM / DAVF stuff with lots of other issues, so I’ll try to understand just the AVM / DAVF stuff.

You’re among friends. I have a DAVF which I had embolised back in April. I’m better than I was pre op but I have better days and less brill days. Today is a slightly odd feeling head day. My DAVF was flowing into my right transverse sinus, with reflux going on outside my head, as well, probably as inside. I, too had a whoosh that grew over time, I too found whooshers.com and self-diagnosed my DAVF as either sigmoid sinus or transverse sinus-related, just like you. I found I could also stop the whoosh by pressing on an artery or vein but I can’t remember now where I used to be able to push.

My primary sent me to ENT and my ENT consultant realised exactly what it was first time, which was great. I was very fortunate to have the right diagnosis first time (except perhaps my Primary, who referred me for tinnitus rather than PT) so, while my journey took a year, I’ve not had the crazy tribulations that you have suffered.

Welcome to the site! Well done for introducing yourself! Whatever you need to know, just ask. We can’t give medical advice but we can certainly share our experience with you, or say “ooh, don’t like the sound of that: definitely talk to your doctor/ insurance / whoever”.

Very best wishes

Richard

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Thank you so much Richard. Yes, I’ve had a bunch of issues. I am so tired of doctors saying Gosh, that’s rare. We don’t usually see this. Ha!!!

Other parts of my anatomy have been deemed too small etc, so it isn’t too surprising to me to think I might have narrowed or tangled veins/arteries whatever. Did you have to get the Angiogram or was your whoosh properly diagnosed via a CT or MRA? I can’t refer back to the text on my cellular to tell. Sorry if you already mentioned it. In the evenings my pain is the worst and bending down or turning head to side, to drive is the worst ,too. I find laying down can help. Did it relieve your head pain too, I’d be curious to know!

And yes, the rain has been non stop for weeks here. Today was the first day we haven’t had a storm yet but sky overcast. Yes, rain makes my head 100 times worse and I live with constant allergies and sinuses that treatment does zilch for. I’m sure that doesn’t help my venous issues much.

My Primary asked me the question right at the beginning “is it a whooshing sound?” which encouraged me, though I could hear it in both ears which I think put her off referring me for PT. The ENT consultant asked me about tinnitus and I said “I don’t care about the tinnitus, I’ve had that for 20 years, it’s the pulsatile tinnitus I’m bothered about!” He went and found a stethoscope and plotted over my head till he found the bruit. He confirmed “AVM” right occipital area based on that. A simple MRI (no contrast) looking for high flow blood confirmed what looked to me to be not a big AVM on the outer edge of my R occipital. The consultant interventional radiologist then confirmed (based on the same MRI) it as DAVF. I did have a contrast angiogram to see the detail, immediately before my embolisation.

Great thanks makes sense.

@RushFanNpain Hello Amy
I am so sorry you are going through this and all your other health issues. You might want to contact the expert in Dallas - http://www4.utsouthwestern.edu/swneurosurg/html/batjer.html

You need a dr who works on these and only these,

I too have a DAVF.

I also have something called Ehlers Danlos which is often misdiagnosed as Fibro. Even though you would think rheumotology would be the first to properly diagnose they dont seem to know alot about it.

There are presently six types of EDs and you can have more than one. There have been a few people on here with avms and who have EDs.

I see a Pain Neuro who helps manage most of my EDs related issues and my head pain from my stroke and my DAVF

hugs
Angela

Are you hypermobile at all? Many people with EDs also have many other health issues including mast cell issues which impact the skin, lungs and stomach.

Update! !!! Update!!! I was actually able to record my whoosh! !! Husband could hear it too faintly last night just putting his ear up to mine! Uploading…

Thanks . I don’t know if I’m hypermobile or not. My IGE for allergies is always through the roof . Nothing helps. No treatments at all no antihistamine or even allergy shots.

Amy,

It is nice to know you’re not going mad, when you can record & play it back, I agree. I managed to record mine by pressing my mobile phone microphone to my head. It meant I clearly had an objective rather than subjective pulsatile tinnitus, though I was never sure I was recording the bruit or a normal pulse.

Well done! :slight_smile:

My recording attached from last July.

Richard

@DickD, it is nice to know you aren’t alone and others can hear it. I’ve noticed my cat spends a lot of time rubbing his head up by where I was able to get the sound recorded. I bet he can hear it!!!

Hi yes what a story. Have u been diagnosed with an AVM in brain/spine? I’ve had a spinal AVM which 'paralysed me in 84 when I was just 27.

My hobby was going to concerts but abt 10 yrs ago I started to get woosh woosh in one of my ears which is now a constant ringing noise. My Dr referred me to a ENT specialist who diagnosed me with hearing loss in both ears plus tinnitus in the other. I’ve yet to find a solution which with chronic pain in my spine and head when I have a migraine is SO debilitating.

Sorry I can’t be of help but this site is excellent as we support one another.

Dize

Still waiting on a diagnosis. Unfortunately, my rheumatologist ordered a CT scan w/ contrast angiogram for me to bring to any site I can since I currently have no health insurance and due to my husbands barely enough to live on income we don’t qualify for any help for Medicaid or anything like that. So I’ll have to go back to working full-time to get benefits again and HOPE I can use them. The last plan I had under Affordable Health Care act literally paid for next to noting. Price for that for a family making right at 50 grand a year in my state meant we had to go from paying 830 a month to 1300. So I have none now.

I wonder if anyone else has experienced ischemic colitis. I had a bout of it on 2013. I wonder because I am starting to believe this stuff might be related with the head and pulse roaring sounds. Because, these last 3 days my bowels have been giving me HELL to where I couldn’t go at all again and during this time the head pain and the ear roaring sounds have eased up. I mean I still hear it. Especially turning a certain way or any bending. But…why the lessening of the sound so much when. The GI symptoms of ischemic colitis acted up? ? So weird. I just Praise GOD that Tylenol does something for me.