Diagnosed: November 2010
Symptoms: excruciating headaches, lightheadedness, ringing in ears,
Nausea, lethargy
Treatment: Diamox for 9 months unsucessful; Topamax 150mg currently successful
Prognosis: good; hoping to be able to return to some type of work in Feb 2012
Pain relief: ultram 100mg as needed (which has been rare now)

Mine is long also

My name is Mary 38yo, have had this for years now, used to get bad HA's when I lived in Germany in the 90's, they went away. Whoosing, tremors, buzzing, and vibrations, near blackouts when standing up from sitting or laying position, visual changes, and HA's widespread in 2004, everything came to a head March 2006, sitting in a chair I stood up felt a pop inside of head and everything appeared to be sideways for weeks. Unsteady, HA's, widespread pain like my neck was broken along with back, and vertigo along with a state of confusion until 2007, I was seeking major help from any doctor that would listen. I was dx with crazyphobia essentially.
2009 went to orthopedic surgeon to ask what kind of bones I broke, mri done, Chiari found, then the fun started. IH, paps, and POTS were found and now it all makes sense why I feel like I was hit by a truck.

Symptoms:
-Ice pick HA left top of head and eye
-cranial junction HA (Chiari HA)
-pressure HA, not really painful 5 on scale, but it messes with me cognitively-feel like I am drunk, can't think clearly, hightened hearing, lights bother me, sounds hurt-like the shower or a vaccuum, my ears vibrate, oh torture. LT & ST memory issues and massive panic attacks when pressure is high
-I can hear and feel the CSF finally go down (drain?) my lymphatics in my neck, sounds like a hula hoop, and feels like it as well, then it drips down my throat and out of ears and nose.
-I feel weird crap in my muscles, especially my back, like someone is taking a rolling pin and rolling out my spine, does not hurt just disturbing.
-Dripping noise inside of my head
-Visual Aura's
-I can see road maps all over-I see the same thing when they examine me with lights in eyes (blood vessels).
-Silver snow when I look up
-Black floater to the left
-looks like someone uses a dimmer light and turns down the lights slowly
-vision vibrates when reading, and in a darkened room
-eyes pulsate with heartbeat
-I CANNOT lay on my stomach, horrible whoosing, massive headrush, and feeling like i am going to pass out.

Used Topomax-felt retarded on it
Diamox-yuck
LP-2 so far helped tremendously
NUCCA adjustments-before I knew they were dangerous, don't do it

I do not take anything for IH management at the time, now stopped the ib for pain cause you all told me is causes retention, I told this to my team of neuro's this Tuesday, they laughed and said I am mis-informed! I'd rather believe you all, they some sucka's

At the current- being tested for EDS (Ehlers-Danlos Symdrome), just had new MRI because examination revealed hyper-reflexia dont know anything yet. I have a few MRI's a year checking Chiari progression, doctor watching paps, if they get worse will have to consider diamox again. NO desperatly wants to find out what the culperate is as he believes is secondary. At home I am trying to conttrol things with diet.
So ensentially I take nothing...........

MM3,

I have the smell problem too.

Comes in two types - smelling something that isn't there, usually something acrid/burning, lasts for less than a minute or two usually/

Then there are times when I smell everything wrong, like auto exhaust smells like dust, or my dog smells like rotten milk. This lasts for months sometimes.

Seizures - we had items in our data base on that. It seems many of us have been having "seizure like" events that are much like partial seizures, or they ARE partial seizrues. If you have events where there are gaps in time, you have loss of awareness, etc., you shouldn't be driving. It isn't safe.

Pay attention to the descriptions in the link below. Go to the partial seizures at the bottom and click on them for more information. I think you wil be very surprised.

http://www.epilepsy.com/epilepsy/types_seizures

More answer to your original question. I have hopes things will get better and then I have a couple of weeks like I've had - headache 10, ringing so loud I'm having trouble hearing over the phone, ugh. Two weeks at a 10, doc gave me steroids, ha today was down to a 7 which was better, but I feel it creeping back up. Days and weeks like this I say prognosis poor.

Ok so really I'm in a very small town so I know that I AM NOT getting the treatment that I should be getting as I know that none of the doctors of any sort around here appear to know what they are doing but here goes my story.

I was initially diagnosed with PTC in 2005 after getting out of my car and temporarily losing my vision for about 5 minutes. (This happened while in Columbia, SC)

I was evaluated by a team of ENT's in Charlotte, NC a LP was done and viola I was fine until recently.

Within the last year or so I started dealing with:
Turning out of one or both eyes resulting in loss of vision on one side or bluring of vision in "straight eye"
Runny nose - I never realized it was possibly CSF until I came on here (I don't have allergies at all, but it would happen when bending over and sometimes when sleep)
Intense pressure behind both eyes (like my eyes are trying to pop out of my head)
Bilateral Migraines that often alternate sides in intensity
Photophobia (especially at night)
Varying sensitivity to smells
Varying sensitivity to sounds (some days are better than others)
Short term memory issues
Tongue tiedness/stumbling over words
Consistently increasing migraines (was initially DX with tension headaches in 2000)
Constant ringing in ears (but no DR ever finds anything wrong with my ears, have been dealing with this for 10+ years as well)
Nausea
Floaters, primarily in right eye
Balance/Coordination issues
There may be more, but at this time of night I'm drawing a blank here.

As far as treatment go this is what's I've been through

In 2005
They did the LP my insurance lapsed but thank God things got better and I didn't have any more issues until recently when I was able to have insurance.
In 2011
They did an LP op was 425 (Idiot NR#1 dropped it to (I think he said) 105)) put me on Diamox, Aldactazide, Zofran, Magnesium, and something else to counteract something of the above. Well, after not being able to sit up for a month, eat or drink for 2 weeks I finally wound up in the ER after numerous calls to NR #1 and his reassurances that I needed to give the Diamox time to work. I'm quite honestly surprised I graduated but I had grade A professors, but I digress. About a month later Topamax was incorporated after several complaints about Diamox and the Diamox was to be weaned off. Well for me the Diamox and Topamax together were a definite no go so I dropped NR #1 and all of his meds at the same time and cold turkey'd everything. ( I started feeling dumber than a brick and that seriously deflated my ego during my senior year of college, I couldn't handle that). My PCP convinced me to get back on a very low dose of the Topamax only and that's what I've been on until last week, where I upped it from 25 to 50 at bed time myself to see if I can try and reduce some of the pressure that I'm feeling behind my eyes.

I don't know if there's hope for me to get better since NR #2 won't return calls, nor give me results regarding my latest MRI, but she's really good about double billing insurance and making sure her money comes first.

So for me I was taking OTC Ibuprofen in varying doses to attempt to help with the migraines but after reading some of these posts I guess I'll see if Tylenol or Aleve doesn't do a little bit better for the HA since that's all that I'm taking while I hunt for a semi-competent DR of some sort in this little hell hole of place that I've found myself living in.

I hope this helps in your mission to educate your DR.