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(Message started by: Luna on Nov 25^th, 2002, 1:30pm)

Title: Any Answers?
Post by Luna on Nov 25^th, 2002, 1:30pm

I’ve had to episodes of what appear to be CH & was diagnosed 2 years ago by my GP. I’ve also had Pulsatile Tinnitus for the last 2 years. After my last episode my doctor ordered a CT scan & MRI. The MRI hasn’t been done yet, and the CT showed a slight abnormality. Another CT with contrast has been ordered. Another doc that read the CT report told me it also says it could be a technical error & they are just trying to protect their legal asses.

Because our local Neuro moved away my GP sent me to an Internist. He diagnosed CH and Chronic Daily Headache. I get unilateral headaches several times a day, on my CH side. Very rarely I will get a bilateral HA. He put me on Valproic Acid and told me it would help both CH and Chronic Daily HA.

About two weeks ago I started getting the droopy eyelid a few times a day. It would last a couple of hours and then go away. Most of the time I would have my “regular” HA with it, sometimes not. I went to the GP who has now referred me to a Neuro in another city. (Hopefully the waiting list isn’t over a year there).

On Saturday night I decided to have a drink while I watched the Hockey game. Within about ½ hour I had the Horner’s with a moderate HA. The HA came and went but the Horner’s stayed for 24 hrs. I went to the ER because I was worried my eye was going to stay that way. My BP and Pulse rate were pretty high.

The doc was focusing on my CH & asked what I was using for it. I told her what was prescribed and also that I would like to try O2 the next time I got hit with CH. But I was trying to veer away from CH. I didn’t have severe pain and hadn’t for a couple of months, so didn’t think it could be CH.

She put me on O2 and within about 15 minutes my eye was back to normal. My BP & Pulse Rate went down substantially. I still had some pain behind my eye so she gave me Percacet, told me it was CH & sent me home.

Now I am wondering:
1) Would the O2 have worked if it was not CH?
2) What exactly are shadows? Could that be my “regular” HA? If so, am I chonic?
3) Does anyone know approximately how much it costs to buy the O2 in Canada (I have no drug plan)

Sorry this is so long. The docs don’t seem to have answers for me so I thought maybe I could get some here.

Laura

Title: Re: Any Answers?
Post by pjbgravely on Nov 25^th, 2002, 3:32pm

Laura,
Shadows are the CH at a lower level. I consider a 1-3 ha as a shadow. I know when a ha reaches a 4 it's not going to stop until it reaches a 8-10. It doesn't sound like you have classic CH but a strange mix of migraines and clusters. Yours would be called migraine cluster syndrome. You may be having migraines that last as long as clusters and that respond to o2. The eye lid may be just an aurora . Of course I am not a DR and I am probably wrong but it is worth a try. Cluster/ migraine syndrome can be found on the OUCH site ( see buttons on left) PJB

Title: Re: Any Answers?
Post by echo on Nov 25^th, 2002, 3:32pm

#1 -- For me O2 was never an effective tool with my dances. Therefore, I cannot offer an experienced opinion of the O2 apparent reduction of the droopy eye lid.

#2. -- For me the shadows are the feelings I get prior to during and after a cycle. Usually set in during certain time of the year, concurrent with the dance.

#3 -- I have no idea on Canadian costs. I thought medical coverage was part of Canadian citizenship?

Title: Re: Any Answers?
Post by Dave_W on Nov 25^th, 2002, 3:40pm

Hi Laura,

O2 works good for me, aborts maybe 3 out of 4 attacks. I know it doesn't work at all for my friends with migraines -- could be a diagnostic hint for you but can't say for sure.

Shadow, in the sense it means to me, are the precursors to an attack. My right ear will start to sing, a knot will start to form in the right side of my neck, and perhaps some stupid song will begin to stick in my head. I know the beast is nearby -- I'm in his shadow. He doesn't always come grab me, but gosh it's scary.

As for O2 pricing, I get by on an average of about 10 minutes at 8 to 10 L/min, and in Memphis that's about $3 per headache (an "E" cylinder is $26US). I would think Canadian O2 is similar in price. A better deal if you're a heavy user is the next size up, but it's too big to tote around. Might get the cost per headache down into the $0.25 range....

Pain Free Days to ya!

Old Dave

Title: Re: Any Answers?
Post by Luna on Nov 25^th, 2002, 4:31pm

Thanks for the feedback.

PJB
I used to get migraines in my 20’s. The aura was a visual thing…sort of like looking through a heat wave. Dark bedrooms & no noise were my friend then. That time has passed.
The CH pain is much more severe & my time is spent wandering around the house, sitting trying to find a comfy position, then wandering again when that doesn’t work.
The “regular” HA’s are on the same side behind the eye, around the ear, but I can still function.
I have never had the droopy eyelid until the clusters hit, and don’t normally have it with my regular HA.

ECHO
There seems to be a lot of misunderstanding about Canada’s health care system. Any Canadian can see a doctor or specialist, have most surgical procedures and treatments done without any/or much personal cost. Unfortunately this means long waiting lists to see a doc or have a test done.
Drugs are not covered except while in hospital. If you are lucky you work for a company that offers a good drug plan. The rest of us do without life’s other extra’s if we want the meds bad enough. (I think everyone in the house lost weight while I was taking Amerge in the summer)

I didn't realize the O2 was so inexpensive! I wish I had found this last summer!

Another thought, Is it possible I’m in another cluster? Could the Valproic Acid (I think it’s the same as Depoke?), lessen the CH pain but still let the horner’s through? I have a HA & droopy eye as I type this, but at least can still type.

Title: Re: Any Answers?
Post by pjbgravely on Nov 25^th, 2002, 7:58pm

Is depoke a narcaotic or other pain killer. If you are able to mask the pain ( most of us can't ) then you will still have the symptoms except the pain. Imitrex, o2 and others will abort the ch and it's symptoms. PJB

Title: Re: Any Answers?
Post by cerebus on Nov 25^th, 2002, 9:21pm

O2 is incrediblt inexpensive and as such here relatively easy to get but you still have to have a prescription, at least here in most states.
I knew about the waiting list thing in Canada as I have relatives there, I believe there is also something about your taxes and medical too, but, the way my grandparents described it the information was incomprehensible to me. made no sense. Haven forbid you Canadians have some sort of immediate trauma.
As far as the pain killers go, for me , narcotics only make things WORSE as far as pain, but , the rest of me feels great. 'Cept for DEMEROL , but, that made me a zombie for two days and my head still hurt but I didn't care.

Cerebus

Title: Re: Any Answers?
Post by don on Nov 25^th, 2002, 10:33pm

Depakote

http://www.nami.org/helpline/depakote.htm

http://www.rxabbott.com/br/dp/dp001.htm

Title: Re: Any Answers?
Post by barbee on Nov 25^th, 2002, 11:34pm

URL
I'm a 12 year CH'er and have just recently tried Oxygen. Sadly, it didn't work for me, probably because the CH hits when I'm asleep, and when I 'm awake enough to put on the mask, it's too late.

My insurance says oxygen is not covered except for breathng problems, so I paid for it myself. The tanks (about 4 E-tanks) plus the cart and control come to about $130 per month. Hope it works for you.

Title: Re: Any Answers?
Post by Luna on Nov 25^th, 2002, 11:48pm

Thanks for the links Don. That is the spelling I was looking for. I don't have epilepsy, bi-polar disorder or migraines (anymore). The internist said it was an anti-convulsant that worked sometimes for CH.

It is not a narcotic....have tried them for HA's and they don't do anything for pain. Worst part is that there have been times I took them anyway....just hoping the beast would respond for a change. Even the Amerge only worked 4 times and I kept buying them because they had worked before.
Laura