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Posted 11/26/2005 4:00 PM (GMT 0)
 Ok here I go....I've been suffering from headaches for almost 5 yrs, (I'm 25 yrs old now), My first experience with a really bad headache was horrible. I felt like my brain had a pulse, my head was beating in rythm to my heart, it was so bad I had my Grandmother take me to the ER, had a CT scan and said it was a sinus infection, took meds and slowly it got better, but still had some sort of headache.....Then I started going to the doctor for headaches all the time, I've been put on antibiotic's (I think I spelled it right) up the butt, so much that my stomach is tore up from it, anyways, I went to an ENT who did allergey testing and found I have alot of allergies....The ENT wanted a CT Scan and this time they found I had alot of retension cysts in my sinus cavities.....The doctor didn't seem to worried so he gave me lots of darvocets and called it a day....In Jan 2005 I went to the eye doctor to get glasses and ended up leaving there in a frenzy, the lady scared the hell out of me, she's like your optic nereve is very swollen and if you had double vision I would call an ambulance to come and get you, at this point I wanted to get the hell out of there (I have anixety about my health VERY BAD) so she referred me to a REAL eye doctor. So I went to see him and he said they were slightly elevated but I had a pulse like a normal person in each eye....So he called my ENT and both of them thought I should get a MRI, that was horrible for me....I was taking Xanax like crazy because of my nerves...So I got the MRI done and went to my GP and she called and got the results so I wouldn't go crazy waiting and I showed no abnormalities and it showed again that I had retention cysts. So back to the ENT and I had another CT scan in Mar 2005 so I could have sinus surgery......After surgery I went 4 months with no headaches!!!! Then the headaches started to come back and it seems I have pain only on the left side of my head right on top and left side of forehead, I've become dizzy alot too, I constantly feel off center......I've went to my GP and ENT like crazy in the past 3 months, I even went back to the eye doctor in SEPT. so he could recheck my eyes and he said everything was the same, he thinks I might have been born this way or the pressure from the cysts in my sinuses could have caused it.......I feel like I should get anopther CT Scan or MRI, because I was never dizzy and off center like this. I have good balance I just feel ike I'm off.....and the constant pain on the left side of my head is scaring me and people with anixety know it only makes you feel WORSE!!!!! I'm taking xanax everyday now, because I'll have a panic attack if I don't. I constantly worry that I might have a tumor or something, my GP is the best doctor I have ever met, she will sit with you for an hour to explain what your condition is and so on, no complaints at all about her, so she is constantly telling me that it's my sinuses or I might me getting migraines, she said she doesn't want me getting all these MRI's and CT scans cause it's don't good for me to get all that radiation. She keeps assuring me that tumors have a patteren and I just had a ct scan in march and mri in jan 2005 to calm down....But I can't I'm scared, DOES ANYONE FEEL LIKE THIS??????? I FEEL LIKE I'M THE ONLY ONE WHO WORRIES THE WAY I DO!!!! I just can't stand the dizzy spells and headaches. I have a 5 yr old I have to take care of!
Posted 11/26/2005 11:39 PM (GMT 0)
Hi there. Did anyone mention the condition of normal pressure hydrocephalus (also known as idiopathic intracranial hypertension)? It generally occurs in young women and can be associated with headache, dizziness, visual problems, also ringing in the ears at times that pulsates....When the optic discs (where the optic [eye] nerve enters the back of the eye) is looked at it can look a little swollen. The only way to really diagnosis it is to have a spinal tap (not a big deal -- believe me, I am a physician and have performed tons of them and had several done on me. You can always ask for something for pain and anxiety during the procedure if you are worried). The spinal tap is to see if the pressure of the spinal fluid is elevated (more than 20 cm or 200 mm - same thing). I am not saying you have this, but with your symptoms it does sound like something that should at least be considered. If you are not having visual problems and you have normal pressure hydrocephalus they can often treat it with a specific diuretic that decreases the formation of the spinal fluid. Do ask your GP about looking into this diagnosis if it has not already been done. Best of luck to you.
Laura L.
P.S. CTs expose you to radiation but MRIs do not.
Posted 11/27/2005 12:53 AM (GMT 0)
Thank You so much Laura!!! I will ask my GP about this, THANK YOU!!!!
Posted 11/27/2005 1:27 AM (GMT 0)
Laura L, I did some research about idiopathic intracranial hypertension and came across Pseudotumor Cerebri (which I discovered was the same thing), my eye doctor (back in Sept. 2005) said that he thought I might have that if I wasn't born with the elevated optic nerve, but he didn't call it idiopathic intracranial hypertension, he called it Pseudotumor Cerebri, so maybe I do have that, you said exactly what he said except I didn't know it went by a few different names! I'm going to call my GP and see if she'll order a lumbar puncture. I can't lie, I am very scared, I just want to be healthy for my little boy! Is this a very deadly disease? Should I be worried?
Posted Yesterday 2:38 AM (GMT 0)
Is cupping of the optic nerve the same thing???

Posted Yesterday 4:21 AM (GMT 0)
I believe it is the same thing? Do you have that? I'm so tired of not feeling good! My head constantly feels FULL!!! My ears are constantly needing to be popped, it's driving me crazy!!! I have lots of pain and pressure on my forehead!!! But I'm afraid to have a MRI, I don't want to know if it's something bad! Just thinking of it being something bad sends me into an anxiety attack! I wish I could just feel normal again! And if something is wrong with me I just pray it's treatable! Ya know!
Posted 11/30/2005 1:56 PM (GMT 0)
My Optic Nerve has been cupped for (probably) ever in both eyes.  I had a spinal tap and there was no elevated pressure, but I get the same dizziness you speak about.
Posted 11/30/2005 8:03 PM (GMT 0)
Hi there,
Sorry not to answer for a while -- I have been down and out with several migraines due to low barometric pressure. Yes, pseudotumor cerebri is the same thing as idiopathic intracranial hypertension (I did not mean normal pressure hydrocephalus when I wrote above -- that is something else entirely!) or benign intracranial hypertension is another name for it. Have you seen an ophthalmologist? This is not a deadly disease but if left untreated (assuming you have it) your vision could suffer. There is no harm in having an MRI -- it will rule out other reasons for a headache and I think it is a very good idea. I just think that a lumbar puncture (LP, spinal tap - done with you lying on your side so the pressure can be measured correctly) will be very helpful as well, given your history. And by all means get a referral to an opthalmologist. And if you have not yet seen a neurologist, that would be a good idea, also. Besides, neurologists usually do more spinal taps than GPs anyway (a generalization, but probably true in most cases). So good luck and go out there and get a diagnosis....that way they can give you the right treatment and you will feel better! Take care.
Laura
Posted 12/1/2005 12:21 AM (GMT 0)

THANKS LAURA....

PTC IS ONE OF MY BIGGIES...

been there, done that!

Posted 12/1/2005 6:33 AM (GMT 0)
To Inju: I see that you already have an ophthalmologist (sorry to have overlooked that) and that he was the one who mentioned pseudotumor cerebri the first time. You were having headaches at the time that the opthalmologist saw you, correct? I am surprised he did not confer with your GP about the possibility of pseudotumor cerebri at that point. Oh, well. Perhaps your GP will send you to a neurologist to get this all straightened out anyway (get the LP, get evaluated for the headaches, etc.) Let me know how things progress. Laura L.

To Jon: cupping of the optic disc is different from (the opposite of) papilledema (or swelling of the optic disc or nerve). Cupping is seen in conditions of increased intraocular pressure such as glaucoma (the disc is "pushed back" by the pressure forming a sort of cup). However some people with normal intraocular pressure can have a fundus (back of the eye) that gives the appearance of mild cupping. Hope this is helpful. Laura L.
Posted 12/1/2005 3:47 PM (GMT 0)
Well I went to my GP and I go for a MRI today at 4 p.m., I am SUPER SCARED!!!! I'm not scared to get the test done, I'm scared because I don't know what the results are going to be!!! I've been doing alot of praying and I pray everything is going to be fine!!! I will let you know what the results are....Thanks Laura L. you've been a great help. :)
Posted 12/2/2005 3:39 PM (GMT 0)
Well I did the MRI and now my nerves are going crazy!!!! My stomach hurts so bad!!! I'm so scared to get the results!!! I just pray everything is ok!!!!! This is killin me, I want to know, but don't want to know!!! I just know that I don't want to live in fear all my life!!! But it's a hard thing to control when you have anxiety so bad......
Posted 12/3/2005 3:33 AM (GMT 0)
I got the results from my MRI, they took the images from the MRI I had in January and compared them with the MRI that I just had and found that my sinuses are infected and worse than they were BEFORE I had sinus surgery! I have 2 or 3 retention cysts, they said my deep tissue sinus is all ifected and that's way I've been having such bad pain on the left top side of my head. So I have to go get a copy of the MRI report from my GP and take it to my ENT to see where we go from here........I just want to feel better again!!!
Posted 12/4/2005 6:18 AM (GMT 0)

Hi Inju.  Just wondering how you are doing.  Do you know which of your sinuses are infected?  There are several different ones - maxillary, ethmoid, frontal, sphenoid.  The one deepest inside is the sphenoid sinus and, at least in the past, patients with sphenoid sinusitis were admitted for antibiotics.  Maybe your ethmoids are infected (kind of between and behind where your eyes are...) in addition to the usual maxillary (those are the ones in your cheekbones) and frontal (in the forehead).  If you have cysts I would imagine they are in your maxillary sinuses.  Do check back in and let us know how things went with the ENT doctor.  Hope they do something to get you feeling better soon!

Laura L.

Posted 12/4/2005 6:51 PM (GMT 0)
My sphenoid sinus is the one that is real thick with mucus and infected, that's why I've been hurting so bad with headaches!!! and I have 2 cysts in each of my maxillary sinuses. She also told me that they found a point 6 size tumor on my pituitary gland (SP*) and that it's not cancerous (THANK GOD), She said it was there when I had my MRI in Jan of 2005 and no one told me, I had no idea it was there, but they said it hasn't grown since Jan, 05. It's still the exact same size!!!! So I don't know what to do!!! She told me not to worry because she knows I obessively worry about my health, she told me that it hasn't grown in a year's time, and that she'll do some blood work to check on my hormone levels. Do you think I should tell my ENT that I need antibiotics through the IV because nothing is working and my stomach is so torn up because of all the strong doses of antibiotics they have put me on...??? Because my head is still hurting pretty bad where that sphenoid sinus is.....Thanks again Laura for talking with me, I really appreciate it!!!!
Posted 12/4/2005 9:35 PM (GMT 0)
A few docs have called my Pituitary  Microadenoma (or it may be a Rathke's Cleft Cyst) an incidental finding.  Good luck to you!!!!  Should be no problem!

Posted 12/5/2005 1:34 AM (GMT 0)

Laura L-

I have had sinus cyst removed on my Rt maxillary and it has returned...I am not having it removed...any word on this...

reasons to have it removed vs. not? provided it is not causing symptoms etc.

(I realize physically seeing a DR. is the best way to go...this would be more...hmm...hypothetical? lol)

Sara

Posted 12/5/2005 4:35 AM (GMT 0)
Jon Romanovich: THANK YOU SO MUCH for writing me, it does me good to hear from people like you, I worry so much, I never use to be like this until I had my son, now I always worry about my health because I want to see my son grow up, my mom said all parents go through it, but I worry way to much she says, lol....I DO!!! lol.....
Thanks again for writing, I really APPRECIATE IT!!!!!

P.S. My doctor did say it was Pituitary Microadenoma, when I saw what you wrote I remembered that she said something about Microadenoma, so that is what she said I had, just couldn't think of how to spell it, lol......Thanks Jon
Posted 12/16/2005 3:41 AM (GMT 0)
Oh my gosh, this is eery. I am 25, have been migraining for five years and am being scheduled for an MRI this week. I don't have any advice for you except: find a doctor who always takes you seriously. I was told it was hormonal, it was stress, it was depression, etc. Find someone who takes an interest. My newest doc is amazing and I finally feel like there is hope in sight.

Good luck

Posted 12/17/2005 3:48 PM (GMT 0)
Exactly Jenna!

That is my biggest thing..you have to find a doctor who knows what they are talking about, believes you, is on your side and knows how to treat you with options that you can work with.

When I meet a doc for the first time I tell them up from to take a seat, I tell them that I am very informed about my conditions (migraines are not the only thing I deal with) and I bring a 3 ring binder with all my medical records and notes I have made with every medication I have taken and how it worked or did, I also bring in my headache journal. I tell them that if things don't work out-don't be offended but that I am aware of what is going on with me better than anyone else and that I need a PARTNER in my healthcare. I also am very open to what they say, but make it clear that I am the one who is going through the daily treatment regimine and it has to work for me.

Now, I put this to them politely-but i lay it out up front so that they know what they are working with and if we don't see eye to eye, I will be politely collecting my records and be moving on.

This last one was actually a saving grace, she took my input and asked me what I would like to try-as far as medications (she knew that I knew as much about them as she did-in most cases)

A good doctor is the key here....

Posted 12/28/2005 10:18 AM (GMT 0)

inju is it possible that your recent dizziness could be attributed to your taking the xanax daily? this is a side effect of that med

good luck,

jenny

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