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Scylla
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Possible answer
« on: Nov 20th, 2004, 3:38pm » |
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I have been reading the posts here since last August when I woke
with my first agonizing, every day, every night, never stopping headache. After about 10 weeks when my doctor hadn't a clue,
I finally was sent by someone else to a neurologist who knew exactly
what it was, it can be partly determined by a simple blood test. I did
not have migraines and not really cluster headaches...just terrible
pain traveling all over my head to back to top to temples, etc.
Some of the symptoms can include pain in jaw and pain when
eating. Also, loss of appetite, etc. I am posting this just in case it
fits Anyone on this list. The neurologist took blood test, found
sedimentation rate extremely high, immediately arranged for
me to have a biopsy of what is an inflamed artery. Not painful,
local anaesthetic, then you go home. The biopsy showed
Giant Cell Temporal Arteritis (NOT arthritis, but Arteritis). The
treatment is Prednisone. It has side effects which you have
to consider. I got my first prescription Friday (it's 5 little pills
per day) I took 2 as prescribed that night and the rest the next
day. Headaches gone immediately. After months of no energy,
cleaned apartment, went to supermarket, came home, so bored
I started scrubbing in kitchen. Today--same thing. No more headaches. I think there are many doctors and some neurologists
who really know very little about this. One woman I read on the
net said she saw 3 doctors and 2 neurologists and finally found
what it was on a website. Its not likely that many people here
have this...it happens mainly to people over 55, but how can
you be sure that what they Call cluster is not really this thing?
The Best thing you can do is go to a neurologist (and no other kind of
doctor) get him to test your blood.
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catlind
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Re: Possible answer
« Reply #1 on: Nov 20th, 2004, 4:03pm » |
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Scylla, thanks for the info. I actually was the opposite to you. I was first diagnosed with Temporal Arteritis and not clusters. My sed rate was 77 (normal is 1-20) and coincidentally it had been taken during an attack. When they did the biopsy, it came back negative, but the doctors insisted on treating anyway because the biopsy is often negative.
An elevated sed rate is not a clear diagnostic indicator for anything except inflammation or infection in the body. You made one point though that will help people who may have the wrong diagnosis. In TA patients, prednisone will relieve the headaches within 24-48 hours in ALL patients. It didn't do this in my case.
The key to any illness is to have a doctor that is informed and willing to explore all aspects of an illness in cooperation with the patient.
I wish you the best and hope you continue to remain pain free.
Cat
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marlin
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Re: Possible answer
« Reply #2 on: Nov 20th, 2004, 4:30pm » |
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So all this can do is confuse someone that actually has CHs in a case where prednisone helps.
I started a pred taper and so far so good. Can Temporal Arteritis be associalted with all of the traditional episodic CH symptoms - afect only 1 side of the head, scalded eyeball, blocked sinus on one side and excruciating pain? Diagnosed CH Episidic 26 years ago...
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catlind
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Re: Possible answer
« Reply #3 on: Nov 20th, 2004, 8:16pm » |
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Everything except the sinuses can be a part of it. The thing to remember is that Temporal Arteritis is EXTREMELY rare in anyone under the age of 40, in fact there are only 2 or 3 known cases here in the US. It typically is an elderly persons disease, elderly being over 60.
Temporal Arteritis will respond to pred the way CPH responds to Indomethacin. It's an almost immediate 180 on ALL symptoms. The head pain of TA should be completely gone with no trace pain in 24 hours. Don't know that pred works that way on CH, it certainly didn't in my case. Additionally, almost all TA sufferers will have an elevated ESR (sed rate) all the time.
If you are concerned that it might be TA, get the blood test but don't get it during an attack. False positives are not uncommon because of the equipment involved, so they generally do at least 2 tests 2 weeks apart.
If you get a high sed rate, and are under 50, insist on seeing an opthamologist before getting the biopsy. The biopsy was a horrible experience for me. When I saw the opthamologist, they tested my eyes, (TA affects the eyes and will cause sudden irreversible blindness) they were of the absolute certainty that I definitely did not have TA. At that time I also had a negative biopsy. There will be no pulse evident in the temporal artery either, or it will be bulging. The doctor to treat TA or any of the vasculitis class diseases is a rheumatologist not a neurologist. Neuro's play a role, but rheumatology plays a larger role.
TA is deadly if it isn't treated. And the treatment involves high dose steroids for the rest of your life a long with other medications.
If your head pain responded to pred completely and totally within 24 hours of receiving it then consider the blood test.
Cat
Also, temporal arteritis is NOT episodic. It doesn't go away on it's own.
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| « Last Edit: Nov 20th, 2004, 8:17pm by catlind » |
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unsolved1
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on Nov 20th, 2004, 8:16pm, catlind wrote:| the treatment involves high dose steroids for the rest of your life |
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That would be aweful 
High doses of steriods for even a few weeks can cause hefty side effects.
BTW ... High doses of steriods will also stop my clusters in their tracks, temporarly.
Unsolved
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Scylla
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Re: Possible answer
« Reply #5 on: Nov 21st, 2004, 10:46pm » |
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I don't know if this will be any help, but before I got to the neurologist,
my doctor, remaining clueless, finally realized that I was in constant
Pain and gave me a prescription for hydrocodone. I gave up all the
Excredin which I was eating constantly, and the cayenne pepper in
tea which does relieve it for a while, and started taking hydrocodone
once in the morning and it would stop the headache until late afternoon
when I would feel the pressure starting and take a second one. It
really helped. It makes you Very sleepy and with 3 mg. of Melatonin
taken around 9 PM, I would sleep all night..oftten 8-9 hours.
Hydrocodone is a prescription drug, generic is very cheap--$5.00
for 60 tablets. If anyone can get their doctor to write them a
prescription--who knows, maybe it would help--and I had actual
temporal arteritis and didn't know it.
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floridian
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on Nov 20th, 2004, 8:16pm, catlind wrote:
TA is deadly if it isn't treated. And the treatment involves high dose steroids for the rest of your life a long with other medications.
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Also, temporal arteritis is NOT episodic. It doesn't go away on it's own. |
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It is a dangerous condition. It needs to be treated. In many cases, it will clear up with treatment and time.
Quote:Duration of maintenance therapy may last for 1 year or more, depending upon the patient's response.
Generally, temporal arteritis appears as a self-limited condition lasting up to 2 years.
http://www.emedicine.com/EMERG/topic568.htm
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unsolved1
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If you were on 'constant pain', no knowledgable doc should have diagnosed you with clusters.
Also, Hydrocodone might help with temporal arteritis, but it is not going to help with clusters.
Unsolved
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catlind
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Re: Possible answer
« Reply #8 on: Nov 22nd, 2004, 8:54am » |
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Actually Floridian, you point out a very good point that should be considered.
TA can be induced by taking certain medications. One medication in particular is pseudoephedrine. Medication induced TA will clear up completely.
However, the entire time I was under a diagnosis of TA, (they didn't suspect medication as the cause) all the doctors and all the literature I was able to find, as well as a group of other sufferers made it clear it's a life long disease. The origin of TA is believed to be autoimmune. One of the medications used in treating it is interferon. I think the only standard med is pred though.
While untreated TA can be deadly, it's wise to point out that sudden blindness and TIA's or full strokes often occur and it would likely be noticed before it killed you.
From NINDS:
Quote:| The prognosis for individuals with vasculitis varies depending on the severity of the disorder. Mild cases of vasculitis are generally not life-threatening, while severe cases (involving major organ systems) may be permanently disabling or fatal. The prognosis for individuals with temporal arteritis is generally good. With treatment, most individuals achieve complete remission, however vision loss may be irreversible. |
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As of right now you can achieve remission but not cure of TA. As with all things, early diagnosis and treatment are key.
Cat
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A true friend is someone who reaches for your hand and touches your heart
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