Is anybody else going around in circles like me?

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

In response to Annuk and Lindie-lou's questions, I havent seen a Neuroligist yet.

 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

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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, 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

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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.

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

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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.

Hi Lynn: