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.
i'm new to healingwell. yours was the first post i read. name's Lynn & 56 years old (yikes! ) 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.
LynnDX: Hypertension "95; Shattered Mediscus Right Knee w/ Torn Tendons & Ligaments "94; Panic/Anxiety; Tinnitus (darn those rock concerts); Excema; Migraines "forever.
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.
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?
wow, wow, wow!!!!!! "...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.
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!
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, erinActive/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.
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. LynnDX: Hypertension "95; Shattered Mediscus Right Knee w/ Torn Tendons & Ligaments "94; Panic/Anxiety "93; Tinnitus (darn those rock concerts); Excema; Migraines "forever.
) 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.
hey thanx for welcoming my mom to your forum here!