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Migraine or Sinus/Ear Issue?


#1

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
Mav


#2

I think i figured out how to post the pic of the CT scan…
Thanks
Mav


#3

Hi, and welcome

Firstly You should find you are unable as a brand new member post anything as yet to,this site because of restrictions in place to keep scammers etc at bay. There are no neurologists or other medical staff on this site able to read and understand it anyway. We are solely a support group and not able to diagnose. Having said that you’ll find lots of advice and support and pratical experience of living with and managing vestibular conditions of any sort here so please do hang around and join us. Read the Welcome and Wiki sections too, lots of relevant info and links to professional sites too there,

As to your question. It’s not an uncommon one. I’ve a friend who had labyrinthitiis five years ago who is virtually your twin. She has ongoing vestibular problems following one acute severe bout of labyrinthitis and is on no preventatives (she refuses to believe she has MAV, basically because she has seen what It has done to me over the years and she thinks if she refuses to acknowledge it, it won’t happen to her too). Interestingly like you, and me, she’s also a lady of a certain age who hit menopause. You’ll find others here too. MAV and menopause go together like fish and chips it seems. Back to my friend, she gets relief from Sudafed. Nobody can tell her why it helps. A VRT therapist denies it can but she’s proved it time on time.

Over six years I’ve researched and researched balance conditions, to solve my own, and everywhere you read there is no such thing as a ‘sinus headache’, it’s migraine. I’m no medic, just a MAV sufferer but if you are menopausal and been told by couple of specialists, it’s MAV, it most probably is! Alot if balance conditions have similar symptoms obviously. We have others here with nose/ear pain. There’s no specific test to tell you it’s definitely MAV. It’s diagnosis of exclusion. If other anatomical conditions have been eliminated, I’d say it’s probably MAV. If you come up with anything better pls let me know. My friend would love a resolution too, Helen


#4

Thanks for your speedy reply Helen. It’s very interesting to hear about your friend - I wonder if I am in the same boat and if my symptoms are as a result of initial labyrinthitis rather than migraine given that I hav no prior headache history. I have an appt with a Neurotologist at end of October - he is a professor so I am hoping he can help - I am going to ask him to test my Eustachian tube function and to do a nasal endoscopy to see if either yields any insight - my Dad has otosclerosis (disease of the cochlea) and is now profoundly deaf so there is an ear disease history in my family.

As to the dreaded menopause, I have seen 3 x gynaes and an endocrinologist who all concluded that while my FSH is slightly elevated and therefore an indicator that I am on the way, my levels are nowhere near bad enough to be yet classed as menopausal particularly that my cycle is still regular and I don’t have night sweats or hot flushes, although my neuro disagrees- apparently being female and 48 is enough in his eyes.

I too have a friend with very similar symptoms and duration, although she has a prior migraine history. She is only 41 though but the same neuro insists hers is menopause related also. She has tried Sudafed also but it didn’t touch her symptoms at all - she is on a low dose of Venf and is having some reduction of symptoms - she never had constant daily pain tho - hers is more dizzy and balance related.

Can you let me know when I will be able to post on the site as I am very interested to get opinions on my situation. In particular from turnitaround, who I believe has ear damage rather than migraine - I would be interested in his perspective too.

I am very frustrated with the meds - I have been unable to get to an acceptable dose on any of them because of the side effects. 10mg AMI made my heart race constantly, 3 x 20mg Inderal caused fainting due to low BP, Gabapentin caused bladder pain, 6mg Candesartan caused constant lightheadedness, 37mg Venf caused really dry mouth with ulcers and swelling around my eyes. I refused to try Topamax or Epilim because of their side effect profile. What meds did you have success with?

Thanks for your support, I really appreciate the time you have taken to respond.
Karen


#5

You can post straight away but before you receive permission to edit/link etc you need to reach specific levels of trust built up over time. @turnitaround, leader is the Tech Geek, not me. I’m sure he’ll respond to your original post shortly. I take Propranolol which has given me quite alot of success. Helen


#6

Ah thanks Helen…this forum is a wonderful resource, it should be mandatory for any Neuro to read this forum!


#7

Hello
Ive posted on here MANY times complaining of ear/ sinus problems. Along with chronic dizziness these are my worst symptoms. I feel like my nose will explode with pressure and pain and wish my right ear would burst and be done with it!
I have had the camera into my sinus cavaties 2 times and both results were normal. My neurologist says this is indeed migraine☹
Jo x


#8

Helen is bang on. Interact enough and the restrictions are lifted. This is to prevent spamming.

Welcome to the forum @Mav


#9

Thanks Jojo65…I am curious about the sinus because my scan shows an enlarged air filled turbinate which seems to be pressing on my septum and am wondering if this “contact” is causing the constant nose/facial pain. I am looking forward to my ENT appt at the end of the month - I want him to tell me whether any ears/nose issues are part of this hell or not.


#10

I did have a brain and neck MRI scan but not on my sinus so maybe i should have…im not sure. All i know is my nose pulsates to bursting point like blood pumping inside it causing pressure and pain and my right ear. Sometimes its relieved with Zolmitriptan sometimes not. Drinking hot drinks and food set it off…its horrendous
Jo x


#11

Hi Jojo I was also told based on brain mri that my sinuses were clear - I will be sure to ask the ENT if sinus issues can truly be seen on a brain mri. I know that nose and ears are inextricably linked so a prob in one can cause a knock on effect in the other. My neuro has told me countless times that migraine can cause face and ear pressure but the question he couldn’t answer is why a decongestant/vasoconstrictor could give so much relief from the pressure. I know that in the U.S if it is suspected that the nose is the source of the pain, the ENTs administer the “lidocaine test” - they inject the nasal cavity with an anasthetic and if the pain resolved it’s a clear indicator that the nose is the source of the problem. I will also be asking the ENT about this - apparently it’s a simple procedure done in the office while you are awake.
Best wishes
Mav


#12

Jojo
This is worth a read…it talks about the tests to be done that may help to distinguish migraine from a rhinogenic type headache. I have also read that a Ct sinus scan is invaluable in showing anatomical problems that cannot be seen on endoscopy. I know what you mean about the facial pain - it’s a pulsing sensation and it radiates upwards into the center of the head. The pain for me is at the bridge where my glasses would sit and down behind the nose and into the center of my forehead giving a dizzy twirly feeling in the forehead and nose.

Mav


#13

Yep, I got that same thing. Its much reduced these days, but still have some degree of it most of the time.


#14

Yes ive read the attached and it makes perfect sense…my neuro knows my nose plays a massive part in my illness. If you get any answers please keep me updated. Can i ask…does any food or drink make your nose pain/ pressure worse? What does make it worse???
Jo x


#15

Hi Jo
Food or drink doesn’t make my nose pain worse…however when I had a head cold recently the pain was way worse - it was the one and only head cold in the last two years…for the first 5 days of the head cold I was taking sudafed 3 times every day and it was reducing the nose bridge pain and constantly having to blow my nose was relieving the head pressure too. Normally I have this constant nagging pain at the nose and at times it increases like a wave and it feels like the pain in my head increases and decreases in tandem if that makes sense. I also get a tingling/pins in needle sensation in the tip of my nose which my Neuro tells me is part of the migraine. However a number of weeks ago I got it in my head that the reason sudafed was working was because perhaps my ears were blocked so I embarked on a regime of using ear drops for a week in case there was a wax blockage - on a number of occasions immediately after putting in the ear drops I instantly got the same dizziness I have had for the last two years and the exact same tingling sensation in the tip of my nose.
This may all be coincidental but I do remember Hain’s flowchart which prompts a re-evaluation of a migraine diagnosis after a certain number of meds have been tried and failed. So I guess that’s where I am at…

Mav


#16

Ahhh dont mention Hains Flow Chart :grinning: .i started a discussion about that…i was scared when i read it because i am now bottom of the list…Botox!! After that NOTHING!!! Helen and James made me feel better though after explaining that my Neuro will not just give up and there will be other meds/ treatment she could try that are not indicated on Hains list…im hoping to give Pizotifen or Venaflaxine a go next
Jo x


#17

Jo
Not sure how the health system works where you are - would it be difficult or costly to get a head and sinus ct scan? Then you would know for sure if there is an anatomical issue with the nose or not. I didn’t ask my neuro to arrange it because when I asked him before should I get an ENT to check me out given the relief from sudafed he told me I would be wasting my money. So instead I went to my GP and he arranged for the ct scan which is covered on my health insurance, when the GP read the scan report he immediately referred me to an ENT…when I showed the GP the scan images he said he is not trained to read scans but from the little he knows he said he wouldn’t be surprised if the ENT recommended surgery. Now it remains to be seen how true this is…the ENT might take one look at the disc and say the opacification of the maxillary sinus is normal given the recent head cold etc but there is a huge part of me that wants this to be the source of my troubles so that I can get it fixed and get on with my life. My appt is at the end of October and I will be sure to give you an update.
Talk soon
Mav


#18

Hi ander454
Can you tell me if you are on meds that has relieved the nose pain and associated dizziness
Thanks
Mav


#19

Yes, well I’ve done pretty well this year with a migraine diet, exercise, life changes, and for medication I was prescribed Verapamil. I started at 20mg and worked my way up to 360mg over the course of 3 months. Its a slow process, but on average head / nasal pressure is coming down. I also looked into some anatomical stuff, including the deviated septum, and I’ve had an MRI, but in the end I guess if it acts like a migraine, it probably is a migraine…

Have you read the “heal your headache” book (see here) ?

In the book the author describes at length many of the things you are describing, about how it feels so much like a sinus problem or anatomical but turns out to be migraine most of the time. He also talks about why over the counter cold medicines help so much. Anyways, thought I’d mention that book in case it interests you.

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