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        New Message Board Archives >> 2004 Cluster Headache Specific Posts >> Temporal Arteritis
        
(Message started by: pam s on Dec 15^th, 2004, 11:31pm)

Title: Temporal Arteritis
Post by pam s on Dec 15^th, 2004, 11:31pm

I'm going to the dr Fri with a printout about temporal arteritis. After a 6 wk episode ending in June, I had noticed mild, nagging pain in the temple, sometimes pain in the neck, and, strangest of all, my scalp would sometimes feel bruised in places, like I had received an injury -- but I hadn't. All these, plus some other things, are symptoms of temporal arteritis, which is some kind of enlargement of the carotid arteries. It can cause sudden blindness in one eye.

Anyway, I believe if I have AT, it was likely caused by 6 wks of Imitrex injections -- 2 mg., several times a day. After several weeks of this, I had the distinct impression that the trex was doing something very bad to my arteries -- all the constantly alternating dilation and constriction. I had the intensification of pain after a shot that some here have described (before relief).

Has anyone else had these symptoms or heard of any connections?

Pam

Title: Re: Temporal Arteritis
Post by vig on Dec 16^th, 2004, 12:55pm

I felt 'bruised' on the top of my head when I did Imitrex injections. Doctor thought I was nuts, well, I am, but that's beside the point.

Title: Re: Temporal Arteritis
Post by JeffB on Dec 16^th, 2004, 2:21pm

I have those symtoms as well, I started up again with the headaches after five years pain free last August. The last episode lasted about 6 weeks then went away 2 days before an mri, well, their back as of 2 days ago after about a month PF. I wonder the same thing about trex which I take in pill form, I too feel sore in my neck and temple area, what I really would like to know is if anyone else has those symptoms and has the HA jumped from one side of the head to the other like mine have recently.

Title: Re: Temporal Arteritis
Post by pam s on Dec 16^th, 2004, 4:39pm

on 12/16/04 at 14:21:56, JeffB wrote:

I've always had tenderness in the temple area, but this is on top of my head. And yes, for the first time ever, during the last episode the pain jumped sides once -- and presently I am having these nagging kip 1-2s on either side. Not enough for me to even think about a CH, but something odd is going on, and it started in the last episode.

Title: Re: Temporal Arteritis
Post by nani on Dec 18^th, 2004, 11:52am

Keep us posted, Pam.

Title: Re: Temporal Arteritis
Post by Renee on Dec 18^th, 2004, 2:24pm

Pam,

Yes, I've had the exact same symptoms and even had an indention appear in hair line of forehead. The good docs did a doplar scan of my carotid arteries along with an MRA and MRV.

All test came back normal except for showing signigicantly less blood flow in left temporal artery (ch side). I was have a kip 3-4 at time of tests.

The docs said the indention in forehead hairline is actually soft tissue damage most likely caused by repetitive constriction. The indention would get more prominent during a ch but is always there to a degree.

Don't know if this helps you or not but I hope your visit brings you some answers.

Please keep us posted,
Renee

edited for spelling

Title: Re: Temporal Arteritis
Post by catlind on Dec 18^th, 2004, 2:37pm

Pam, I was initially misdiagnosed with Temporal Arteritis instead of clusters.

A couple of things, this truly is an old persons disease. It's extremely uncommon under age 60, and unheard of under age 40 - maybe 2-3 cases world wide under 40.

The doctor can do a simple blood test, ESR - sed rates, normal range is 1-20. Do not get the test while you are having an attack.

TA is a vasculitis. What that is - is an inflammation of the vessels/arteries. A typical symptom is a painful scalp, painful to the point that brushing your hair is excruciating, and an overall feeling that your hair hurts, this is in addition to the "headache" pain.

If your sed rates are high, then you can expect to have a temporal artery biopsy done - it was not a pleasant experience, but it isn't painful. This test will often come back with a false negative however. An angiography of the vessels in your brain is the best method of diagnosis, but again is not always right.

The vasculitides cover many different auto immune diseases, including central nervous system vasculitis, and the only gold standard for diagnosis for this is a brain biopsy.

In all cases, high dose steroid treatment will treat the condition, and other drugs may be added. The steroid dose will be gradually lowered once things are controlled and then you will remain at a low dose for a time period determined by your doctor.

It can and does cause irreversible blindness if not treated, and can cause death. Generally speaking, your doctor would be already treating you for the blindness and strokes before it reached a fatal stage.

Sed rates are only an indication of inflammation or infection in the body, so it isn't an accurate diagnostic tool for TA, but it is the first step in determining if there is any inflammation.

There are some cases of vasculitis being caused by medications, primarily meds like sudafed. I have not heard anything about imitrex being a drug that would create this condition. The dilatation and constriction of the vessels is not what TA is about though, it's a full inflammation of them and as best as they know right now, it's caused by an auto immune disorder, and your body attacks it's own vessels. It's the contriction of blood flow from this inflammation that causes strokes if left untreated.

I am not a doctor, so obviously research everything and speak with your doctor, I'm just relaying the information I researched and learned from my docs during the 13 months I was labelled with this diagnosis.

The head pain should disappear completely within 24 hours (sometimes as long as 48) with steroid treatment.

Cat

edited to add: Neurologists and rheumatologists are the kinds of docs you'll need to treat this if it's what you have.

Title: Re: Temporal Arteritis
Post by pam s on Dec 18^th, 2004, 6:13pm

Cat and all,

Thanks for the feedback. I knew there was no other bunch so in touch with their head arteries as this bunch. :-)

The internist ordered the blood test and said if it was positive, he would prescribe prednisone. (I do so hate that stuff.) I had read that this test is not definitive, but maybe I will try prednisone next time I have a symptom and see what happens. I don't have them all the time and they are mild -- my hair does "hurt", but only if I move it around, and the headaches are just nagging -- certainly not close to a CH.

I was thinking trex might have triggered this because I had the impression that it was doing something very bad to my arteries, after six weeks of many injections a day. That might have just been the panic element of cluster surfacing -- at the time I would have bad panic attacks, but didn't realize at the time that this was common with cluster.

Thanks,

Pam

Title: Re: Temporal Arteritis
Post by catlind on Dec 18^th, 2004, 7:42pm

Pam,

Trex may well be involved, I just hadn't read anything about it in conjunction with vasculitis back in 2000/2001. There's much more data available now, and it may fall into the category with other drugs like sudafed.

The prednisone therapy sux. At the time, they thought it was temporal arteritis, but suspected it was a branch off from CNSV. With CNSV you are sentenced to prednisone therapy for life.

If your sed rates are high (mine were 77 but it was taken during an attack) then maybe ask him about seeing a rheumatologist and consider angiography. The biopsy has too high of a false negative rate IMO but that's something for you to discuss with your doc.

Hope all turns out well for you.

Cat

Title: Re: Temporal Arteritis
Post by kissmyglass on Dec 18^th, 2004, 8:10pm

Dr. Cat...has a nice ring to it... think you missed your calling cat... :)

Kev

Title: Re: Temporal Arteritis
Post by Sisyphus on Dec 19^th, 2004, 11:00am

My last bout was the first time that I have used Imigran with real consistency (due to previous GP reluctance to prescribe) and now, post bout, I am experiencing very strange feelings in my "CH pathway". I am not in pain but it seems that the pathway has remained active and I am aware of it. This is the first time this has happened in over 30 years of CH. I am consuming alcahol so I know I am not in a bout but whereas before, when a bout ended, that was it until the next one, I now experience this feeling, non painful sensation along the CH pathway. As I am currently composing some stuff on CH I would appreciate any insight or similar experience, particularly after imigran use (sumatriptan). I would also like any anecdotal stories of visits to the doctor and GP ignorance on the condition. The reason for this is that I am about to engage at a very local level with medical profession ignorance in a very positive way.