ADV

Hello,

So many issues with me i am not sure where to start. Better pull up a chair. I first began to hear a roaring whooshing sound much like a water fall. A huge kind you would hear at the locks. It was sudden and accompanied by the most severe and sudden headache I'd ever had. I did not get head pain even with chronic sinusitis prior to this and i was sitting perfectly still when it occured . I did have a virus or what I thought was one, at the time, then 6 months later would learn i had enterobacter aerogenes in my left sinus...in my nose. Which was the same side I hear the now ever present sounds in my ear . Long story short I got work up with ENT....I'd had fluid trapped in my ear and even an eardrum burst before but this felt completely different. No pain behind the eardrum. Although the ENT did note fluid in there , I was told it was minor and of no consequence and wax was removed yet I still heard the roar. At times it was a grinding loud roar.....at one time i happened upon informtion about pulsatile tinnitus and read of the many physical conditions this could cause the headaches would wax and wane and come and go and ENT did a CT scan showing a vein rather large up against my left eardrum. He believed this to be the cause of the sound and sent me on to neurology and the neuro i saw at the time 6 years ago was a quack.....that is roughly when i learned I had both EBV and Mono AND the enterobacter in my nose....I was one sick puppy. The neurologist did an MRI and did NOT use contrast to view the veins or whatever and pronounced me healthy other than unspecified migraines and cubical tunnel syndrome of arm I believe. He dismissed me because I did not have MS, his specialty ......so I just learned to deal with it and almost all of my family, my husband etc refused to believe for one second I might actually have something serious so when i read about the AVM and symptoms of that I would ignore them the then the headache got worse and two years ago I lost my job and health insurance I now have a part time one but due to complications from other health issues, I really don't think I canwork fulltime to earn benefits husband refuses to change jobs and truth be told we can afford a policy on just me....he just honestly doesn't want to and it is incredibly hard and frustrating when earning health insurance benefits has always been on me (he is technically self employed therefore he has never received benefits) since up until two years ago, I have always been the one to work full time many times more hours the full 40 hours week despite having 5 surgeries by age 32......more hours than e even he does just to keep insurance. I do not feel my family parents and ......Inlaws included truly takes what I have been going through seriously at all. The ear roaring noise is so loud at times I must occlude the neck to hear from the ear. I recently paid out of pocket to see my rheumatologist to get refills on meds i am out of and also a new neurologist for the head pain . She believes it is due to muscle spasms in my sternoclemastadoid and occipitalis muscles and others. Recommended physical therapy and we are now looking at doing a venogram. It turns out at least this dr is saying that she could see my arteriesjust fine on the CT scan my ENT, who did recognize it as having to do with the veins, she the new neurologist says my arteries look fine BUT yes one side of my head that right side is doing the work for the other side....it looks pencil thin and barely there on that side. . I am told this is a normal anatomical variation but yet it should not cause this sound or pain. So what the hell. If you put a finger in my ear you can actually FEEL it pulse in time to my sounds and also heartbeat. Especially if I overexert myself. I also get dizziness and have had chiropractic adjustments which didhelp for two years.....then one day it was like my body rebelled. I get sudden pain to the back of my skull and even slightest turn of my head it will roar or I'll hear a pop sound and then boom in pain can barely turn my head. Living in Louisiana is the worst....the rain and humidity before a thunderstorm I can always predict the weather because I am drunk feelinglike a sailor and in pain stiff sore and dizzy. It makes driving difficult. OH i should alsoadd while the vein close to my ear was found I do also have nerve related hearing loss in that ear and conductive loss in the right ear......at times if I have to strain. I will almost hear an echo of the whooshing roar in my right ear! Thankfully it goes away. I can handle the high pitched buzz of regular tinnitus in that ear ....the roaring in the left is horrible.........they did find cervical spondylosis of C2and 3 I think maybe more on my MRI. I was 31 when this was found and told that's normal for someone my age and it was very minimal in the amount of pain I was in I assumed i had to have some autoimmune arthritis or something they were missing but none of that shows up and the head pain precedes the findings of the enterobacter in the nose and subsequent cultures they insist the infection was gone. All of those antibiotics made my "normal" dysfunctional gut ten million timesworse and I am not sure it will ever recover. I have had to be hospitalized due to how bad the gut is so I have to be so careful of what I eat and these are just a few of the ongoing issues I have.....thankfully only my angry bladder keeps me awake some nights and not blessedly this roaring in my ear although I sometimes can emphasize with Van Gogh Ha.

But seriously it is a horrid sound and all of the stories Ihad read about AVMs ,these sounds tit is usually something physical causing it such as brain AVM. In the meantime I am going to try myofascial release massage instead of physical therapy as I have actually done it before and without insurance it is outrageous and....without continuing to do it the paincomesback. Every time my chiropractor would adjust my occiput i would feel so much relief but I stopped due to lingering pain from it and fear of an AVM.