RE: Headaches/Intro - new member

[Guest guest]

Thanks Kathleen My twin sister's name is Kathleen, too.

I had migraines TOO on top of this other problem - superimposed. No one

understood what I was talking about. While my constant head pain is very

migraine-like, it is caused by inflammation of my left carotid artery and all

its branches on that side of my head and scalp. The pain and pounding are very

like a migraine, but my migraines are in the front, around the eyes, and the

pain level is 10 rather than 6-8. Also, a migraine has a start and an end. My

vasculitis never ends - for 6 years.

I stopped getting daily migraines when I started taking lots of diuretics. The

inflammation and swelling in my head was precipitating migraines. So now I

rarely get migraines. My disease is an autoimmune/inflammatory disease which is

not neurological - it is vascular. The telling thing is that my sed rate (blood

test) is high which would not happen with migraines.

Have you tried long-term migraine prevention meds like elavil and/or

anticonvulsants? Do you take tryptans? What has worked for you?

claire

[Guest guest]

Hi Clair,

I've tried many different meds for migranes. At one time I was taking a

blood pressure medication to help prevent the onset of the migranes. It did a

pretty good job too. Can't remember now why I stopped taking them. I use

Fioricet at the onset and then go to (brain fog) one of the imitrex type ones.

For

the life of me I can't remember anything this am. It generally helps but

sometimes I have to go in for a shot of Demerol. The worst ones are those that

wake me from a dead sleep.

Is there anything that helps your constant headaches? Is there anything they

can do to help you. I know from my migranes how dibilitateing those can be

and I can't imagine how you make it thru the day with that kind of constant

pain. Did something bring this on?

My best to you.

Kathleen in Calif.

[Guest guest]

Krag52@... wrote:

> I've tried many different meds for migranes. <snip> The worst (migraines)

are those that wake me from a dead sleep

Those are definitely the worst for me too. Very hard to get rid of. Much

nausea, vomiting and barely making it back to the bed.

Since I had the radio frequency neurotomy done, I have not had any middle of the

night migraines. It's been four months since my last one. They used to occur

three or so times a week. I thought I was going to have to resign from my job,

but my board of directors was very understanding.

I still get migraines, but they happen in the day time. And like in the old

days, I am back to having an aura before the migraine hits. This gives me time

to stave off most of them. My first line of defence is cafergot and the three

drug fiorinal. I start with two tablets of cafergot and one cap of fiorinal.

If the aura/migraine does not resolve within one half hour, my instructions are

to take a single cafergot (up to four singles) every half hour until the

migraine resolves or flattens me. I only take two fiorinal every four to six

hours, as the three drug kind is quite potent and the barbiturate in it makes me

sleepy.

Yesterday, I fought a migraine all day. The aura kept dancing and my stomach

kept churning, but thanks to the neurotomy and the drugs, it never did get a

proper grip. The body symptoms were there, but I didn't get the headache. I

only had to have a lay down for an hour in the afternoon, as I was starting to

feel quite worn out.

If I am not quick enough with cafergot, I have to use Migranol nose spray.

(Imitrex does nothing for me).

With the combination of the neurotomy, ergots and Fiorinal, I have not had to

have my husband drive me to the doctor's office for a morphine shot for several

months. My doc's clinic does migraine treatments, so that their patients don't

have to carry the expense of presenting at the ER. I wish more docs did that.

--

Lyndi

[Guest guest]

I read the notes about migraines and wanted to add in what has helped me.

When I was first diagnosed with them, I had been having rebounding migraines

for four months straight. I too was started on a heart medicine. It was a

beta blocker. It made me very sleepy but did stop the migraine in it's

tracks. For prevention, I was put on Zoloft. My dosage started at 50 mg a

day and then was bumped up to

150 mg before it really started showing some real prevention. I got to

where I could actually go as high as 2 to 3 months without a migraine where

before it was continuous then every other week then once a month and finally

once every 2 to 3 months. My doctor said that they did not know what it was

in Zoloft that caused the prevention, they only knew it did work and it

wasn't a dangerous drug to take.

I had to go off the Zoloft when I lost my job to my blindness. I couldn't

afford to pay for the prescription. Thankfully, my doctor continued to

prescribe the Duradrin and I was able to get Darvocet for really bad

rebounds when it just would not go away. The worst one I had was on the day

I had my graduation picture taken with my guide dog for graduating from the

guide dog training program. My first/former guide dog Dori could predict my

migraines. I had ran out of Duradrin but was fortunate that a classmate

also suffered from migraines and had a couple of Midrin to spare. That was

a really bad migraine because it made me nauseaous. I hate those.

I wish my current dog could predict the onset but so far all he can do is

predict when our new kitten is getting ready to have a low-blood suger

seizure. I am pleased about that though.

I hope this helps.

Sam

**************************************************

Migraine prevention.

[Guest guest]

:

I have systemic lupus and after reading up on the side effects of steroids,

I have begged and pleaded with my doctor, and he has agreed to keep me off

steroids for as long as possible. Prednisone can mask other problems and

can also cause kidney and liver damage. I am glad that you are looking for

other ways to control your disease.

A friend of mine takes Neurontin and seems to be having good results. I

take Arthrotec 75 for the inflammation. I am prescribed to take it three

times a day but I only take it twice a day.

There are times when I have to have steroids but generally it is if a flare

is extremely bad or if I am having breathing problems related to bronchitis

or pneumonia or plain old COPD. But, I try to keep it to a minimum.

Sam

****************************************************************

, 20mg prednisone a day, autoimmune inflammatory disease.