Hello - I am in need of your advice/opinion on a suspected case of Temporal Arteritis / Giant Cell Arteritis. I am only 35 years old ( live in USA), but believe I have some sort of autoimmune dysfunction and other issues related to some bad gene mutations I inherited (recently found out I'm compound MTHFR C677T and A1298C). I've had several inflammatory conditions in the past that all healed in time (extremely dry/red eyes, costocondritis, carpel tunnel/RSI, bad tension headaches (back of head) and neck pain, etc.
However, just recently I have experienced the following symptoms that i never had before:
* Temporal area headaches, bi-lateral but sometimes only on left side. Seems to get worse as the temperature drops. Sometimes moves around to different areas on the sides of head.
* Numbness on sides of head above ears upon waking (mostly on cold mornings)
* Occasional headache on top of head.
* Slightly protruded temporal veins (it's quite possible I am just now noticing and focusing on this)
I do not have any fever or other neurological symptoms. I was admitted to the ER and had blood work done, and my ESR and CRP are within normal range. The ER doctor said there is no way I have TA/GCA as I don't fit the profile, but after researching and reading case studies I now know that it can be difficult to properly diagnose.
This has been ongoing for 2+ weeks and started directly after I saw a Chiropractor where I received a spine and neck adjustment. The Chiro hit my neck really hard with an activator tool (despite me explaining prior that I wanted gentle manipulation only!), but he did not twist my neck.
Is it possible that a hit to the neck could trigger GCA by some inflammatory response? Or is this more likely just muscle tension related? As I mentioned I have never experienced headaches like this before, but I also never had a chiropractor adjust me before. Maybe it is just contracting/spasming temporalis muscles in the head?
I have followed up with my Primary Doctor who also discredited the possibility of TA/GCA, and just prescribed muscle relaxers. I have taken relaxers, and other OTC meds with no relief.
I do not know what to do at this point, as I don't want to be miserable and risk further damage but also hate the idea of having to take steroids to correct this. My body does not do well on medications , as I already have severe Tinnitus caused by an anti-depressant Escitalopram.
Is there any way to heal minor cases of GCA without the use of steroids? I have been taking Curcumin and several other supplements, but have not noticed any change.
Any response is greatly appreciated, the more the better.
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HealMe1111
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I did read that it is not a good idea to let chiropractors manipulate!! It is extremely unlikely that the chiropractor caused GCA though. Do you have tenderness on your head when combing your hair for example? When you eat do you get jaw pain? Is your vision OK? Has anyone given you any diagnosis?
First of all, pred does not heal/cure anything. It is a management strategy which keeps the inflammation down to control symptoms until the underlying autoimmune cause of the inflammation burns out. Until recently there was no other successful option to keep blood flow to the optic nerve sufficient to remove the risk of visual lost.
However,
"This has been ongoing for 2+ weeks and started directly after I saw a Chiropractor where I received a spine and neck adjustment. The Chiro hit my neck really hard with an activator tool (despite me explaining prior that I wanted gentle manipulation only!), but he did not twist my neck. "
I think it is too big a coincidence that this started immediately after the use of the activator. There are several things that can lead to GCA-like symptoms because they interupt the blood flow in the neck, including ankylosing spondylitis, a form of inflammatory arthritis. In theory, anything which could cause instability in the c-spine could lead to such symptoms. I'm not saying it was definitely related to the activator - but you obviously already had a spine/neck problem. It is certainly more likely than GCA at your age - I'm not saying it isn't, I'm saying it is very rare and the coincidence with the chiropractic too big.
Has anyone done any imaging of your neck at any point?
The chiropractor visit was definitely a regrettable experience - to be honest my neck and back were mostly fine at the time (I always carry some tension in my neck, however) and the main reason I went was to see if it would help lower my Tinnitus , as several members of another online support group have had some success with chiropractors and physiotherapists. After a consultation with the Chiro and subsequent X rays showing my spine having bad curvature (he said my head was about an inch forward), I decided to give it a shot. Now I am dealing with 2 dreadful issues
At the ER, I had a CT scan done but no abnormalities were found. However I declined to have it done with contrast dye (was very worried as its toxic and i've had so many other side effects with even very low doses of meds), so they couldn't get a good view of the blood flow and such. I asked for an MRI since this can give a better view without contrast dye, but was told they could not order it in the ER and i'd have to go through a specialist first.
Anyone know if an MRI (w/o contrast) can accurately diagnose GCA?
One other question - is the temple pressure/pain associated with GCA constant, or can it come and go? Right now, it is not very noticeable at all. Other days it is quite painful.
Contrast media for both CT and MRI improves how easily the blood vessels can be seen. Like putting a white flower on a black bit of paper. In fact the contrast media starts to leave your body pretty quickly and should have gone in 24 hours if your kidneys are OK. If you are allergic to iodine you should tell them as that is the main base of the contrast media. What toxicity were you worried about?
My concern is that my body doesn't detoxify itself as well as it should - I have several gene mutations to support this as well as my experience with prescription drugs. I have severe tinnitus after being prescribed a low dose of Lexapro for just 2 weeks and now another recent spike from taking 2 single doses of a muscle relaxer called Zanaflex. I also have severe insomnia which doesn't help as sleep is needed for the body to detox properly. If you look at the side effects of iv contrast agents they can be severe. I was relatively healthy up until June when several things transpired and it's been one thing after another ever since. It has turned my life upside down and i'm basically clinging to life at this point. I'm very sad, depressed, anxious, and fearful of everything because of what has happened to me in the past 4 months. I can't even take psychiatric drugs because they are all ototoxic and can make my tinnitus even worse, among other things.
I can understand your concerns as I tend to react badly to medications. I reckon it is because I have not taken anything until I got PMR since I was a child, not even OTC painkillers or indigestion tablets. Although I am allergic to Novocaine which the dentist uses.
Sad, repressed, anxious and fearful.....you might consider finding a therapist to talk to. I now you feel better soon. I have GCA and the headache, jaw, neck and shoulder pain are awful..
I am now on Methylprednisolone and Actemra and doing well. I take 4 mg and 6mg on alternate days and will be dropping to 4mg soon. Have held off since I had a very stressful week!
I had a chiro do that to me too and no I didn’t go back because I had an awful headache. I go to a gentle and trusted osteopathic person instead. Even if you don’t want another treatment I would complain to them now just in case there are further developments with your neck and need a paper trail. The timing is spooky but I doubt GCA was triggered by it.
I bang on about the sternokleidomastoid muscle in the neck a lot because problems with it are very common and can mimic GCA. Your already unhappy neck may have been upset by your treatment. Have a read and see if it chimes with you
Rheumatologists say it is virtually unheard of for anyone under 50 or even under 60 to get GCA which is why the doctors will be dismissing that possibility. But no doubt there are recorded cases. Keep pressing doctors for answers.
There are - the other day I was trying to find a newspaper reference for a man in his 30s in South Wales who died of a stroke which was found at post mortem to be due to undiagnosed GCA. Pathologists know it all - just they are too late!! There are a few reported in the literature but most cases in under 50s are Takayasu's arteritis which is histologically identical but affects organs as well.
Forgive me if I'm on the wrong track, here, but I don't see any info on blood tests and inflammatory markers.
Also, have a scientific medical professional asses the doses of supplements and medicines you're taking for possible conflicts/interactions/side effects. I'm not trying to minimize your pain, but it would be good for you to know.
Okay, I know this will anger some people. But, do not ever ever let a chiropractor touch your neck. Science has been trying to shut down this practice for a long time. Over 40 thousand strokes a year are suspected, highly suspected, and some proven, to be caused by chiropractic neck manipulation. I repeat this. Do not ever let a chiropractor touch your neck. There are two large blood vessels that make a 90 degree turn by your ears. When this area is manipulated it creates scar tissue inside of the blood vessel. People have had their neck adjusted and suffered a stroke a week or two later. The scar tissue occludes and causes a major stroke,
If you are diagnosed with GCA, it is especially dangerous to let a chiropractor touch your neck. Your large blood vessels are already inflamed.
Whatever is going on with you it sounds like your blood vessels are irritated. Stay away from chiropractors!
There are tests they can do to rule out GCA, a temporal artery ultrasound, or a temporal artery biopsy. But since your SED and CRP are normal I doubt they will do that.
I was misdiagnosed for years and years. I went to Mayo Clinic in Rochester, MN and was finally diagnosed with a biopsy.
I have had neck pain for decades. A warm bath, a heating pad, and two Magnesium Malate pills along with two Tylenol fix it. magnesium Malate is a good form of oral magnesium. Can cause loose bowels, a bonus for me on prednisone. Do not take too much. Hyper magnesium can affect your heart. But is the same as epsom salts in a warm bath, which will also cause loose bowels and relaxes muscles. Sounds like you have some super tight neck muscles. Can become a chronic condition. I have been battling for decades. Learned what I can do, and can not do. Oh, there are very expensive pills prescribed for migraine. My girlfriend takes them. The main ingredients are magnesium and tylenol.
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