Re: New to group and need help....

[Guest guest]

Hi ,

Your story sounds so familiar it is almost scary. I have had my non-stop

headache since the first week of June 2007.

I am a 50 year old grandmother, RN and I work for a pharmaceutical research

organization. After not sleeping due to the headaches, I couldn't perform my

job. I had a very difficult time staying on task and being able to think

clearly. After talking numerous times to my manager, we decided it best that I

take a leave of absence.

I have at this point seen multiple doctors, (including neurologists and

neuro-ophthalmologist), had numerous MRI's, CT scans, x-rays, blood tests, urine

tests and still I have the headache with additional symptoms of falling,

difficulty balancing, (I now need a cane or a walker to feel safe from falling),

spinal pain between my shoulder blades, shortness of breath, chest pressure, my

vision is getting progressively worse, my short term memory is failing me

quickly and my overall daily strength is becoming more of a precious commodity

to be used sparingly and not to be wasted. I have many days when I am just worn

out all day. There were some things found abnormal on my tests, but nothing

that would give a definitive diagnosis.

I decided to look for a diagnosis on my own. I found that all my symptoms

appeared to me to be linked to a Chiari Malformation I. A neurologist said at

Duke University Hospital told me this was not right because my tonsil herniation

(around 5mm) was not deep enough to meet criteria and some of my symptoms were

not Chiari symptoms. From all I read and researched, all my symptoms are Chiari

related. I then printed out all I had learned about Chiari malformation and

brought the information to my primary care physician. After reading the

information he agreed with me that my problem was possibly CMI. He encouraged me

to write to the Chiari Institute and fill out their questionnaire. I did this

and I met enough criteria that I am scheduled for my first visit February 29,

2008, at the Chiari Institute in New York. I am so excited that an end may be

in sight for this pain in my head.

I have put an icepack on the back of my head, along with taking an NSAID. This

at times has given me enough relief to be able to fall asleep. I just recently

got a prescription for a sleep aid. Although I felt better the morning after

the first night of sleeping, I felt drugged for 2 days after taking the sleeping

pill, so unless I get desperate again, I won't be taking another one. For me, I

am looking for a cure and not something to mask the symptoms.

You are not alone, and I hope you don't have to suffer as long as I have. The

ice pack may help you and I sure did feel better after some sleep. My headache

originated in the occipital part of my skull (back of my head). It is always in

that location but I have pain behind my eyes at times and I also have it in my

temples at times, mostly on the right side. If my headache is just in the back,

then the ice helps. I got this advice from other Chiarians and it seems to

help. Anything that lessens the pain is worth a try.

I don't know my outcome and my official diagnosis, but if you need to talk feel

free to write me I'll be a good listener.

Not yet diagnosed officially,

Ruth

New to group and need help....

Here is my story, please help me....

I am a 35 year old wife and mother of 3 beautiful girls.

I started getting headaches on the right side of my head, in my

sleep, on 12-22-07. They wake me up every hour after I go to sleep.

I have had them now for 16 nights in a row. I am now experiencing

migraines during the day, every day, which I have never had in my

life.

At first, I alternated between Execedrine Tension, Execedrine

Migraine, Ibuprofen and Sudafed Sinus. It was Christmas and I didn't

have time to go in for my " sinus infection " . The pain got so bad on

Christmas Day that I got the doc on call....in tears. I hadn't slept

in days and I was in so much pain. He suspected it was sinuses and

told me to go to emergency. No thanks, I took more over the counter

meds and tried to enjoy the rest of my Christmas. The 26th, I went

to the doc and got antibiotics for my " sinus infection " ....still

taking my over the counter cocktail to mask the pain. I was staying

up as late as I could possibly stand it....2 or 3....just to avoid

the pain from sleeping. I ended up in Urgent Care on the 30th

because I had gained 15 lbs overnight. They ran bloodwork and a

pregnancy test. I have not had a period since September but there

was NO way I could be pregnant. They called the next day and my over

the counter cocktail of meds caused my liver levels to elevate and

swell. On New Years Eve, with all the doctor's offices closed for

the holiday, he told me, " Do not put anymore medicine in your

mouth. " I wanted to die.

I went back to my doctor on 1-2-08. She ran more blood work, did

another urine test, ordered an MRI with and without contrast and

gave me zomig. She was convinced it was my Sphenoid sinus because my

pain runs up the right side of my neck, into my scalp, behind my

right eye, down the front of my face and front of my right side of my

neck.

The MRI showed no masses but noted that I have ACM. That is all I

know. Now she gave me Topomax and Amerge to help with the

headaches. NOTHING is helping me. I went to bed at 11 tonight, woke

up at 12 with a headache....went back to bed and here I am;[ I feel

like the walking dead.

This all started in September. I had knots between my shoulder

blades and my right shoulder really ached. So.....I went to a

chiropractor. He took xrays. He showed me that my neck was out of

alignment and he adjusted me. The pain only got worse. But, I went

back 8 more times. Shortly after, I got a " sinus infection " ....which

the doctor treated with antibiotics. A few weeks later, I was at the

doctor because I couldn't get a deep breath. I thought I was having

a heart attack or something crazy. Nope....just fine....my lungs and

heart sound great. A few weeks later, I was back at the doctor again

because now I feel like I am going to pass out whenever I stand up

and it was really scaring me. I was sent home with some nose spray

because I have a little fluid in my ears. Now the headaches.

I am miserable and I really need sleep. Can anyone give me any

advice on how to do that? My husband is scared. My kids are scared.

I can't take much more. I call the Neurologist for an appt on Monday.

Sorry so long....thanks for anything you can give me;)

Oregon City, Oregon