Knight, I could have sworn that I didn't have any allergies but the ear and balance clinic that I was going to gave me allergy tests and I found out I was highly allergic to cats (didn't have a clue) and mold and musty odors etc. This could posibly account for the fullness in your head. Also, as I was reading about how tired you are (which just seems to go along with all of our dizzy problems) I couldn't help but wonder about sleep apnea. I had to sleep just one night with a simple apparatus clipped on one of my fingers which showed that I wasn't getting enough oxygen when I sleep. Could that be a possibility? I know you are discouraged but just keep on trying. You will find the right doctor very soon. I promise to pray for you as soon as I send this message that God will give you wisdom and clear direction. Yvonne

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Shellpointer

sounds life a csf leak to me

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Hi Jordan

Yep with those symptoms I would go and see neuro otologist!.As you say your cognitive symptoms are getting worse and you want it get looked at ,don't let it go on.Your cognitive symptoms together with all your other symptoms could well be PLF or SCD (CSF leak) and neuro otologist is the one to see about that,I can put a tick next to every symptom of yours except I used to sleep like a baby and you have sleep apnea.Sleep apnea is mentioned though as a symptom of CSF leak as the fluid can obstruct the nasal airways.

Meeshyell,the tingling,buzzing sensation on the bridge of nose and also like a downward pressure sensation I had too.When the brain sags all the connections on the inside of the brain are stretched and you feel it like a downwards pull on the bridge of nose withh tingling or twitching sensations,also the blinking of the eyes is because of the refocussing that we doing but the optic nerves etc get stretched,like a downward pull on the inside of the eyes also causing blinking. .Is like everything is stretched inside the brain to reach where it should be,like the inside of the head does not line up with the outside and in essence that is what is happening because the brain is not where it should be.For the last couple of month I would also had a constant tingling sensation at the tip of my nose,Not sore but so annoying.


Take care

Moppie

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<div align="center">We strongly advise anyone wishing to take up vrt or change/stop medication should consult their doctor first.</div>

Thanks for the info Moppie !

I kind of left the doctors last week thinking it could not be PLF although many of the symptoms I feel were making me lean towards it,
The reason for this confused me some what as from what I have read plf is not shown on a CT scan

but when I went in to see the doctor last week ,he told me that my CT scan was good and that what was seen showed basically all the white/black spots were correct wich meant the fluid was good and the brain was in a good position, after hearing that I figured ok then !

So i guess a question I would have is How much fluid leaks ? and if thats what it is and causes the brain to sag, why would that not show up then ? can just the smallest leak cause the brain to sag just enough to cause symptoms but not show on the CT ? if that makes any sense lol

I have had this question for a few days just not sure how to word it correctly without confusing !

but once again thanks for the info ! I do see the ENT next week again and will ask him about this !

Meeshyell,

yes that is the same symptom. One thing I have learned after reading so many posts especally on MAV, is that some of our sensations are the same, we just tend to use different words to describe!!!!

Knight-Ryder,

You have a huge family history of migraines. As you continue to search for help, please keep Migraine Syndrome in mind as just about every symptom you have described, I have had or contiue to get, I am now getting better after my dx and meds...it has just been a long road. Migraine presents itself in many ways.
I hope you find what you need to help you get well. Let me know if you want me to send you the book.

Pam 3

Hi Jordan

Go to a neuro-otologist and take your list of symptoms with you. Ask them about Lyme disease, Migraine Associated Vertigo and Perilymph Fistula or Superior Canal Dehiscence (that all the others have mentioned).
You said somewhere that you used to go to the gym and lift weights? If your dizziness started after that, it could be a big clue to PLF. Also your strong family history of migraine is a big clue too. You do not have to get headaches for it to be migraine. The symptoms you get just depend on where the blood vessels are going into spasm. Just because your family members had headaches doesn't mean you will.

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xx


We strongly advise anyone wishing to take up vrt or change/stop medication should consult their doctor first.

Hi Mee

PLF does not show up on scan as it is in the membrane and the scan will show the bony parts.Sometimes it might show fluid in places where it should not be but very hard to detect and often is not visible.Also the leak migh be severe or without much strain almost stop,might just have drained as with certain headposition the collected fluid at a certain spot,for instance in middle ear or in sinus cavity might have just drained with a certain headmovement out of nose or down back of throat so at time of scan there might not be any collected fluid at all.In short,most PLF's do not show up on MRI or scan

I had MRI twice scan,xrays etc and never did any thing show.The reason that the position of the brain does not show is because when taking the scan or MRI we are laying down .Is also the reason that allthough the symptoms are not completely gone we might feel a bit better after lying down for a while and the symptoms get more severe when sitting up or standing as that is when the brain sags with the gravity.So it is very easy to miss or not visible at all.

So as you say,the tiniest leak can cause those symptoms yet do not show up on MRI or scan.I have a CD of my op and seen the leak,it was about 5 or 6 pinpricks and fluid would well up every time he wiped it dry.Is like a drippig tap,leave it for an hour with the plug in and you would hardly see it ,leave it for a week and the sink is full.A lot of the symptoms when starting with the dizzyness you might not even experience at the start .You might feel the symptoms from the ear and they alter because you start compensating straight away and then the headaches start ,neck stiffness or soreness or the buzzing or the tingling,twitches,numbness etc.I got tremor with the CSF symptoms but the tremor did not start till about 4 weeks into the dizzies so obviously the level the longer it goes ,the further it goes down and different symptoms appear.Like the constant tingling on the tip of my nose I did not get till probably the last 4 months of my dizzies,before that it might have been on and of but in the start I did not have that at all. The technology,ever improving,especially in the last ten years is great but also one of the big reasons that this gets misdiagnosed or forgotten about,as they nowadays rely on technology and if there is nothing to show on there then it is just all in your head.A neuro surgeon I saw hit the nail on the head when he said,sitting with his back to me looking at the computerscreen looking at my MRI "Sorry sitting with my back to you but we now have all this modern technology and we don't look at the patient anymore" That was the only right thing that came out of his mouth in the three visits I made to him and how true it was what he said.Might be high time that they start to turn around and start looking and listening to the patients again.

All the best

Moppie







I

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<div align="center">We strongly advise anyone wishing to take up vrt or change/stop medication should consult their doctor first.</div>

Your a doll Moppie ! thanks so much for taking the time to answer that for me !

after reading this reply Iam really starting to think this is what the problem is, how would I attempt to ask the doctor to check for it without seeming bossy or pushy ?

What you mentioned all your symptoms and how they would come and go , ease of when lying down etc... very much sounds like me, and the more I had thought about what I could of possibly done the more I pin point the time just before my dizZiness started about a month or so , I was getting into my car and forgot to move my head LOL but I really smashed the side of my head quite hard on the car !

I very much appreciate you taking the time ! and hope you are doing well today Moppie ! I have read so many of your posts and must tell you , you have a heart of gold !

Could constantly returning fluid in my ears be PLF by any chance? I also seem to feel better when I am horizontal and not vertical but don't remember any particualr head trauma before my dizziness, its a while ago now!

Essentially, I keep having fluid come back in my ears, first my left, then my right, then went back to my left.

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Okay I think I have ths down.

Go to my GP, as I did before, and ask to see an neuro-otologist..(well maybe push a little).

Am I getting this right?

I went before to push and see an ENT which ended up no good, so I am guessing this is my next step?

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