Severe pain behind right ear

[Rebecca613]

es To: Anyone Hi everyone,Im 39 yr old female
I had an artery disection in my verbiral left artery about 2 1/2 yrs it happened when I found out my mother had passed suddenly. I still have pain daily from this.
High blood preesure from heart defect that I was born with was a factor. But since 2 weeks in intenive care and alot of rest I just manage barely somedays.
I have been having severve pain behind my right ear for over a year. The pain goes on for hours and only goes away with lots of ibroprofen and sleep and laying very still. I sometimes have a crunching inside my ears and a clogged under water feeling in them too.
I have had cat scans and mri scans and they tell me theres nothing wrong. I hate going to er cause they act like its not real. My husband will rub the spot gentely but it becomes to painful to handle. Any suggests to whom to see and what to do. Sick of the constant pain and hat pain pills. My stomach is upset from the ibroprofen alot. Sometimes my right jaw tightens upand then the migrane kicks in. Stress seems to make it worse too. I have also been experiencing dizxy spells and nause lately too.
Im at loss here, the er thinks im crazy and im not sure if its a major deal or is this something I just have to live with.
from Rebecca

[ginsum]

Try to get in with Dr. Gornik at the Cleveland Clinic - take all your old scans - maybe she can help you sort it all out.  I've had nights like that too, where you wake up a lot - just to make sure you can.  Also try to figure out your meds - mabye some of them are giving you bad side effects?

Get lots of rest and take it easy on yourself - when you feel like crap everything else doesn't feel right as well.

Gina

[Rebecca613]

Oh ya as for being run-down I am always tired and have to uy ake naps furning the days alot. Tightness in chest and shortness of breath comes to often. Some nights Im afraid to ho to sleep in fear of  not waking up. My husband doesnt understand  just how bad I feel and that I need to be seen by foctor. I seem to forget things alot more and get confused. Im so emotional that I just cry on minute and so angry the next. Im scared but hope if I go its peaceful and fast. I really dobt think that I have many years left and not sure exactly what to do. The truck is our home and thats really all we have left now .

[Rebecca613]

***@****  look me up on facebook or email me anytim. In ft wieth tx and headed to la,califorina tomorrow. Happy holidays to uou and your family. Hope your son feels better soon. Has he started a journal and it helped me to narrow down some foods that wad bringing on migraines. Hope your dad recovers. Its a long process to recover from bi-pasd surgery. My x was only 42 &had a triple by,pass but with therepy he should do just fine.

[Rebecca613]

Yes I agree with hopes of the new year bringing some light and happy days aheaf. My husband is a over the road trucker I can no lo nb ger drive a rig cause the pain gets so intense sometimes. My vision is also going especuallh at night. The light tracers and spots are to much sometimes. Sometimes I also have a blackout on half of one eye,i can look in another direction but its like a black cloth over half my eye. I tell the doctors at er anf they seem to think im loomin lol. It gets scary and I want to just cry. I feel like noboy understands but im glad im not alone and have someone to tell that womt think im crazy. Thanks gina

[ginsum]

Hi Rebecca -

So if it's not the carotids maybe it's left over pain from your vertibral?  There's so many nerve endings - who knows - though  it does seem a little low to be causing the pain that high.  My pain comes and goes and is not as severe as it was at first.  I still hear the thumping all the time and I still get migraines with TIA symptoms.  I'm also run down a lot.  Like waking up everymorning with no energy almost like if you have the flu - that run down feeling....My dissections don't seem to want to heal - so we just keep an eye on them - they are all puffy with pseudo annyrisms as well.  I was going thru a really rough time when my carotid blew as well - so that's very interesting that yours happened when you were going thru a painful time - sorry about your mom.  I do think heartache and stress have a lot to do with this kind of thing.  

Have they diagnosed you with FMD - or has anyone checked for that?
What do you do that you are always on the road?  I'm a photographer and love to travel whenever possible!!

Our family has been in the hospital for the last 3 months almost straight - first my dad nearly had a major stroke and they had to stent his vertibral - it was a success and went very well.  Then my son had to get his appendix out.  (me inbetween at dr's offices with this and that health issues from my FMD) then my dad again - appearently they never checked his heart - and he had a 99.9% blockage and went in for a triple bypass.  He's still trying to
recover from that - slow going.  And my son just went in with stroke like symptoms - which they diagnosed as complex migraine.  I'm about one step away from the loony bin!! Too much stress and worry.  I'm so excited for the new year in hopes of actually not going to the hospital!
Take are of yourself and if you want to talk ever - let me know - support is so important!  Gina

[Rebecca613]

Thanks for taking the time to answer me. I will definitly be checking into a more knoledgable doctor. R u feeling better or does the pain always remain. They dida contrast mri and cat scan on my coradeds and said they was fine about a yr ago. I just hate how it has interfered withy daily life . But im going to research some doctors in cincinnati,ohio. Its so hard living on the road and rarely being in one place for more than a day or two.

[ginsum]

Hi - have they done a mri/mra of your carotids?  When mine tore I had the pain in my jaw/ear area - and a thumping noise - I've heard others talk about hearing a crunching or paper tearing sound when it happens to them?  something to make sure of.  check out www.fmdsa.org if you haven't done so.
I had the left one torn first - called an internal carotid dissection - then after the right one tore a month later they decided I had fmd - fibromuscular dysplasia   - a weakness in the arteries - most docs aren't up to date on this rare disorder.  Also sometimes people have a spontanious dissection that will heal over time and that might not be related to fmd.  My story sounds similar to yours and I would try a different doctor or go to a bigger city/hospital.  Google Dr. Gornick or Gornik at the Cleaveland Clinc - might be a good place to start closer to you.  I saw Dr. Olin out of NYC - and I live in Portland, OR.  It's important to go see the best - it's your health and your life - if you're not getting the answers you need - then go elsewehre and be your own advocate - you're not crazy - you probably have something rare they're not looking for!
either way I'm so sorry to hear and hope you figure it out!  Gina (forgive spelling - rushing)