Is anybody else going around in circles like me?

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pballchic
New Member


Date Joined Jul 2006
Total Posts : 7
   Posted 7/22/2006 1:27 AM (GMT -6)   
Hi, I'm new here. I can relate to Melanie, this board is my last resort.
I feel like i'm about to have a nervous breakdown of some sort.
I have been dealing with migraines pretty much since I was about 25.
I'm 46 now.
Only in the last year have they incapacitated me to were I have lost 2 good jobs.
I have been to 2 different doctors. The first doctor I had seen for 5 years and he
tried different muscle relaxers because my migraines begin as tension headaches and
progress to migraines very quickly. He has tried almost every migraine medicine on
the market.
There has been so many times i had to go to the emergency room cause i felt i was
dying, i would be vomiting and crying all night and would have to go get a phenergan
shot.
There has been many times I had no one to drive me to the emergency room
and i was in too much pain to drive myself and would almost overdose on tylenol p.m.
or lortab, just anything to be out of pain. To be totally honest, I have a migraine that
last sometimes 4 to 7 days at a time and the only relief I have is when I sleep.
Yes, I have had a CT Scan, they could find nothing that gave them any clues to
what is causing these headaches. I either have intense pressure and pain at the
base of my skull or I have both the pain and pressure at the base of the skull and
neck and the all over migraine, feeling like I have a hatchet in my head.
Finally the first doctor tried me on Topamax, which Amazingly decreased the
migraines from 4 to 7 days out of the week to 3 a month, that was awesome.
Well as anyone knows who takes Topamax it's not cheap. When I was working and
had insurance i could afford it but now that i can't work due to the migraines, i can't
have insurance.
I am trying to get the Topamax through a patient assistance program.
So far Topamax has been my only breakthrough.
The new doctor I'm seeing is trying me on Relpax until i can get back on the
Topamax. But even with the Topamax i was taking 150 mg. a day and still
having around 3 really bad migraines a month. He may have to increase the
dosage a bit more.
Can anyone else relate to what I'm going through.
Sorry so long, being as I'm new and wanted to give you a bit of background on myself.

Annuk
Veteran Member


Date Joined Jan 2006
Total Posts : 1308
   Posted 7/22/2006 11:02 AM (GMT -6)   
Hi Pballchic,

Welcome to Healing Well. I am sorry that you are suffering so, and have been for a long time by the sounds of it. If you have read any of my other posts you will know I have had the darn things for over 30 years!! Without a preventative I have them around 5 times per week!! I am in the process of being assessed by a Neurologist who is a Headache Specialist. Have got to say here in the UK he has a unsupassable reputation, so I have great faith that he will not stop until he has found something that works!! - yes I am blessed!!!

You said you have seen 2 different Doctors, were they Neurologists? I really hope you can find a way through this. Have you kept a headache diary at all? It could be helpful for the Doctor to see what you are going through. Would it be possible for you to see a Neurologist who is a Headache Specialist?

This disease is wicked and can make your life miserable I have been there! Hang in there, you have friends here now to share what you are going through. We have no medical training but we can only speak from our own experiences, any questions you have we can only answer from that experience, you should always check anything out with your Doctor.

Please let us know how you get on, take care Ann

Lindie-Lou
New Member


Date Joined Jul 2006
Total Posts : 3
   Posted 7/22/2006 1:22 PM (GMT -6)   
hi Pballchic,
i'm new to healingwell.  yours was the first post i read. name's Lynn & 56 years old (yikes! eyes ) i sure do relate to you.  my migraines come from the base of my neck & the migraines get so bad my neck crunches & terrible pain all over temples and the whole freakin' thing gets sore!  used to really get them bad, knock wood, where they were crippling!  had to lay in a dark room.
and so sensitive to light.
gets worse when i stand up or bend over too.
i never was on migraine medication.  i used to just take excedrin migraine or Percogesic.
 
mine lasts 8 or 9 hours and it seems nothing really helps...it just takes its course.  but if i had it during the nite????????? no sleep.
 
i use ice applications. they somewhat help but what really gets rid of it?
they are incapacitating...i can't even open my eyes when they come.
 
no health insurance for me either.
 
and ya know what?  every day at least at some point during the day...there is always a headache present. last migraine was last week.
usually when i get up in the morning.
do you get the same as well?  when you first wake up?
 
but after a bad migraine for me...there is no headache the next day; the whole head is sore to touch but no migraine.  funny thing is...when it gets dark outside like at nitetime...they get better.
 
do you have blue eyes?  i've been told that people with light eyes are more prone to migraines.  i do.  can't tolerate sun or glare.
nice talking to you and i hope the Dr can find something for you to get rid of those migraines.
Lynn  
DX: Hypertension "95; Shattered Mediscus Right Knee w/ Torn Tendons & Ligaments "94; Panic/Anxiety; Tinnitus (darn those rock concerts); Excema; Migraines "forever.
Meds: Norvasc 2mg daily; Lorazapam 5mg PRN; ASA daily.
Proud Mom of House Nurse Erin @ Arthritis Forum and fun Aunt to a great nice and nephew! :)


pballchic
New Member


Date Joined Jul 2006
Total Posts : 7
   Posted 7/22/2006 3:30 PM (GMT -6)   
In response to Annuk and Lindie-lou's questions, I havent seen a Neuroligist yet.
Of course there again, right now I have an insurance issue.
My latest doctor however has gave some glimmer of hope.
He is from East India and seems very knowledgeable.
He had me research on the net about Chiari Malformation since I have
been dealing with this for as long as I can remember.
The symptoms and all sound like me to a tee.
He wants me off all tylenol and Motrin for 2 weeks as he thinks I am also
having rebound headaches. He has me on Midrin right now and relpax but the
relpax does nothing, the Midrin helps but knocks me out for about 9 or 10 hours.
Meanwhile, having trouble holding a job. Do you think I would be eligible for
SSI?
Yes, I do have Blue eyes but have never heard of people with lighter colored eyes
having more migraines or headaches, hmmm, interesting.
Also I did a little research on my own, and found an article on Rheumatoid Arthritis
of the Cervical Spine that fits alot of my symptoms also.
Hope those 2 tidbits of info help someone else and hopefully maybe the doctor
will either rule those out or not.

Lindie-Lou
New Member


Date Joined Jul 2006
Total Posts : 3
   Posted 7/23/2006 10:54 AM (GMT -6)   
hi.  an eye doctor once told me that people with blue eyes are more sensitive to sunlight & lights.
i think you should give it a shot applying for ssi.  and you can't work with an all day migraine...so give it a shot!
my daughter has a chiari malformation. 
i've heard of rebound headaches. is that when you take too many aspirin or something and get a headache in return?
 
try to wear dark sunglasses outside all the time.  i used to wear my sunglasses in the house.  it helpes filter out the bright sun.
 
and GLARY SNOW! used to wear my sunglasses all winter.
i hope you feel well & i hope your doctors help.
 
Lynn
 
DX: Hypertension "95; Shattered Mediscus Right Knee w/ Torn Tendons & Ligaments "94; Panic/Anxiety; Tinnitus (darn those rock concerts); Excema; Migraines "forever.
Meds: Norvasc 2mg daily; Lorazapam 5mg PRN; ASA daily.
Proud Mom of House Nurse Erin @ Arthritis Forum and fun Aunt to a great niece and nephew! :)


erin.K
Veteran Member


Date Joined Mar 2005
Total Posts : 3148
   Posted 7/25/2006 12:18 AM (GMT -6)   

:-)  hey thanx for welcoming my mom to your forum here!

she told me you suffer from a Chiari Malformation.  have you consulted a neurosurgeon for an opinion?  what's the status of the ACM?

i do not get very bad headaches (rarely never a headache) but the Chiari adds to fluid imbalance, seizures, dizziness and a pressure feeling @ the base of the neck.

has any of your MDs brought up the Chiari as etiology for the migraine?

the best to you. :-)

erin


Active/Severe Rheumatory Arthritis. Crohns. AS. Chiari Malformation & Right Brain venous anomoly. Partial complex seizures. Emphysema. Rheumatic Lung & Heart. MVP and Tricuspid prolapse. Had Lymes disease for 10 years.
Meds: Humira 40mg Q 4 days; Prednisone 20mg; Pentasa 4G daily; Imuran 50mg; Dilaudid 4mg; Diazepam 5mg; Avinza 60mg; Reglan; Antivert 25mg tid; LidoDerm; MiraLax & too many others.


pballchic
New Member


Date Joined Jul 2006
Total Posts : 7
   Posted 7/25/2006 1:14 AM (GMT -6)   
no, only this one doctor brought up the fact i could have chiari malformation, because of the pressure i feel in the base of my neck.
what do you do for relief of the pressure?

erin.K
Veteran Member


Date Joined Mar 2005
Total Posts : 3148
   Posted 7/25/2006 12:10 PM (GMT -6)   

wow, wow, wow!!!!!! eyes "...could have a Chiari Malformation..."     yikes, that needs a definitive DX via MRI or CTscan.  has he ordered one yet?  i would get on em' with that one!  i mean, to assume someone may have an ACM is a BIG ASSUMPTION!

it really isn't a good thing for him to think it is one and not have a diagnostic film to prove it.

i would really REALLY get an MRI to be safe.

Chiari Malformation symptoms vary greatly from person to person. one can have a very prominent chiari and be asymptomatic & no problems at all; while others can have a less prominent malformation yet have severe symptoms.

treatment is based on symptoms and how badly it interferes with life. surgery is the most successful treatment.

for me it isn't too bad.  the RA & complications are far worse.  but the Chiari adds to (or causes) my already seizure activity, loss of sensation in the limbs etc...

for pressure...it's not good for me to bend down head first to say pick something up; not good to bear down or strain for BMs; and the biggie is not having any sharp, acute head positions while sleeping.  so pretty perfect alignment of the neck and head has to be had for sleep.

other than that, an occassional diuretic and meclizine helps symptoms from pressure & vertigo.  i also avoid adding salt & i buy foods with less salt content if available. whether or not it's the ACM that's causing my breathing problems is still in question.

Chiari Malformations are a serious thing.  If you do indeed have one...it doesn't mean it WILL be serious...but you know what i mean...it's the brain we're talking about so no one should fool around with that. 

i truly hope your doc clears things up. an MRI w/ IV contrast is a simple way to check for the ACM. it's worth the while just to see what's going on.

take good care.

erin


Active/Severe Rheumatory Arthritis. Crohns. AS. Chiari Malformation & Right Brain venous anomoly. Partial complex seizures. Emphysema. Rheumatic Lung & Heart. MVP and Tricuspid prolapse. Had Lymes disease for 10 years.
Meds: Humira 40mg Q 4 days; Prednisone 20mg; Pentasa 4G daily; Imuran 50mg; Dilaudid 4mg; Diazepam 5mg; Avinza 60mg; Reglan; Antivert 25mg tid; LidoDerm; MiraLax & too many others.


pballchic
New Member


Date Joined Jul 2006
Total Posts : 7
   Posted 7/25/2006 11:52 PM (GMT -6)   
Wow, when you were talking about sleep positions for your neck, i can totally relate. I hurt so much at night and Ive tried different kinds of pillows. The memory foam neck pillow and a feather pillow.
The memory foam pillow feels good for about a night or 2 and i start hurting again and can't sleep.
Everything your saying and the research ive looked at sounds like I could have ACM.
Kinda scary but at least it's an answer to the excruciating pain Ive been in for so long.
I meet with my doctor again next week and we will probably have an MRI set up.
Thanks for the info!

erin.K
Veteran Member


Date Joined Mar 2005
Total Posts : 3148
   Posted 7/26/2006 10:03 AM (GMT -6)   
Oh thank goodness! Have that MRI...the best move you can ever make.
With the pillows, it's an annoying process! If they are at too much an angle, no good. So I have to maneuver so they are place @ a gradual 30 degree incline. Sleep flat w/ no pillows is hellish! And I love to sleep on my tummy...but you know how the neck goes! Argh!
For me it's a pain in the a** more than anything.
Thank heavens I don't get migraines or headaches (1 or 2 a year if that) from the ACM. And as long as it doesn't mess around with intracranial pressure/my spine/ and limbs I'm happy.
The autoimmune disease is enough to deal with.
Please let me know what comes of your MRI.
Best wishes to you,
erin
Active/Severe Rheumatory Arthritis. Crohns. AS. Chiari Malformation & Right Brain venous anomoly. Partial complex seizures. Emphysema. Rheumatic Lung & Heart. MVP and Tricuspid prolapse. Had Lymes disease for 10 years.
Meds: Humira 40mg Q 4 days; Prednisone 20mg; Pentasa 4G daily; Imuran 50mg; Dilaudid 4mg; Diazepam 5mg; Avinza 60mg; Reglan; Antivert 25mg tid; LidoDerm; MiraLax & too many others.


Lindie-Lou
New Member


Date Joined Jul 2006
Total Posts : 3
   Posted 7/28/2006 8:30 AM (GMT -6)   
Hi it's Lynn,
How are you doing pball? Does the heat in the summer make your migraines worse? Today's a bad one (humidity) with my eyes. Ones-a-comin'! I know it.
Very glad to see my daughter is helping with some information about the brain malformation. It is a scary thought for a mom. She thinks nothing of it!!
Keep cool and take care.
Lynn
DX: Hypertension "95; Shattered Mediscus Right Knee w/ Torn Tendons & Ligaments "94; Panic/Anxiety "93; Tinnitus (darn those rock concerts); Excema; Migraines "forever.
Meds: Norvasc 2mg daily; Lorazapam 5mg PRN; ASA 325mg daily.
Proud Mom of House Nurse Erin @ Arthritis Forum and fun Aunt to a great niece and nephew! :)


pballchic
New Member


Date Joined Jul 2006
Total Posts : 7
   Posted 7/31/2006 10:35 PM (GMT -6)   
Hi Lynn:
 
Yes the hot weather is rough on my migraines.
Ive been feeling somewhat better the last couple of
days, Thank God!
I have a doctors appointment This week so we will
see what happens from there.
I have noticed that the less stressed I am the better.
Maybe because I have had good days the last 2 and
not stressed.
Work and my daughter are my main 2 stressors.
I havent talked to my daughter in 2 days and I have
been off work for 2 days so I guess that is why
I feel pretty good right now.
Thanks for all the info and your concern,
I am so thankful I found this board.
-Denise
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