Good morning to all of you - i have been in hell for the last 2 yrs and would greatly welcome your thoughts on all of this. Like all of you, mine is a LONG story so please bear with me as I try to be as brief as possible.
In work on 13 Sept and felt slightly off - a bit dizzy like my eyes and brain weren’t in sync, head felt really foggy, couldn’t concentrate to drive home. Went to GP - he said labryinthitis and put me on Serc 16mg x 3 times daily. Dizziness got worse - not vertigo or spinning but a dizzy feeling inside my head - head and eye movements made it worse. Intense nausea, a dull pressure headache in the back/top of my head and an intense pain at the bridge of my nose which radiated backwards into my nose/face (i still have this today).
After 3 wks of this, i had a brain MRI which was normal, an ENT also diagnosed labyrinthitis but to be sure he sent me for ENG/VNG testing which showed a 16% weakness in my right ear but he said it wasn’t enough to be causing the dizziness/headache - he reckoned migraine. Then i went to a Neuro (who was pretty bored and not very helpful) and he diagnosed Migraine (possibly hormonal in nature as i was 48 at the time). Tried AMI but couldn’t stick it and it didn’t touch the pain or dizziness.
Then this pattern emerged - wake up in the morning with headache and intense pressure at bridge of nose but no real dizziness for the first approx 20 mins. After moving around trying to make breakfast a weird pressure in my whole head would start to creep in, my eyes would feel strained and i would feel spaced out of it - this would last the whole day and would start to recede in the evening time and i would be back to the baseline headache and pressure in the face.
I waited for 6 months for appt with a leading headache specialist here in Ireland - he diagnosed chronic migraine (female, age 48 and therefore likely hormonal !!) and over the last 2 years i have tried and failed AMI, Inderal, AMI again, Gabapentin, Candesartan, Venlafaxine, GON, Candesartan & Venf combi - nothing has touched the pain or the dizziness. I am unable to drive and have been signed off on sick leave from work.
Now here’s where it gets weird - one evening approx 6 months ago, i was so bad all day with head pressure and the spaced out feeling, i took a Sudafed and within 45 mins the pressure and spaced out feelng drastically reduced. Initially thought it was a coincidence, so took a Sudafed the next morning when the spaced out feeling duly emerged and bam it had the same effect - it didn’t kill the pain or resolve all of the dizziness but it stopped the pressure and made me feel “present” again. It made me recall that in the evenings when this spaced out feeling would spontaneously reduce it often coincided with me yawning. I mentioned this to my Neuro at 2 subsequent appts and he couldn’t offer an explanation as to why Sudafed was altering my symptoms when 2 yrs of drugs did nothing. He cautioned me about the long term use of Sudafed and told me to restrict it to a few times a month.
As you know, Sudafed is both a decongestant and a vasoconstrictor, why this is helping so much? I remember reading an article about a woman who suffered “migraine” for 12 years only to discover that it was an anatomical defect in her nose that was the cause of her pain. So i have had a sinus ct scan done - this report showed complete opacification of the maxillary sinus and from the images it looks like i also have a large concha bullosa (enlarged air filled middle turbinate) although that wasn’t written on the report. The only wrinkle here is that when i had the scan done it was 10 days after i had a head cold which blurs the lines a little bit but while i had the head cold it seemed that each and every symptom I had for the last 2 years was vastly increased, the pressure, the nose pain, the fogginess, dizziness. I was taking Sudafed 3 times per day during the head cold and while the relief was massive i am still left with an enduring pain at the bridge of my nose which radiates up into the head and dizziness/disequilibrium. I have also noticed that when this pressure/strained eyes/foggy head comes on, if I put my finger tight into my ear to create a vaccuum and wiggle it around it can temporarily relieve the pressure also.
Is it possible for me to post a pic of my CT scan here? I would greatly welcome your thoughts and wisdom on this - does this sound like Migraine, MAV or is it more like an ear/sinus issue?
Thanks so much