For a long time my PMR condition has not required counsel for some time. I am grateful for that. Please hear my story and offer your wise opinions. I am experiencing a pain crisis. This may be a bit complex.
HERE’S THE BACKSTORY: Nov 12 I had my twice/annual rheumatologist appointment. I had tapered for 20 months from 4mg/da. She and I rejoiced that I had no pain, was only on alternate 1mg/da & 1/2 mg PRED, and blood tests showed no inflammation. By Dec 8 I saw my regular doctor to complain about killer neck pain & debilitating right side migraine style eye pain. I asked him could the pain be Prednisone withdrawal? He thought NO, believing it was vertebrae or muscle related, so prescribed Robaxacet (muscle relaxant), new blood tests, an ECG yesterday, and will have an MRI sometime in the next 6-9 months.
GOING FURTHER BACK: I am 82. For 7 decades I suffered from Cluster (suicide) Headaches. At 70 yrs I was retired & Clusters diminished to a few, and Canadian Government supplied me with Oxygen concentrator and Refill machines. Oxygen customarily works for me. With the current pain, oxygen doesn’t yet seem to be as effective. I am fortunate when I can end pain early. Otherwise the (rip-your-eye-out) eye pain last for hours.
HERE’S ARE MY QUESTIONS: Could this neck pain be a tapering flare that brings on the eye pain? Should I bump up prednisone dosage as a test? 5mg, or 4mg, 3mg, 2mg, or 1mg?
Written by
DrRon
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The neck pain may be down to a flare - is it one of your usual PMR type issues… but if you think it is that affecting your eye that doesn’t sound typically PMR-ish to me.
If nothing seems to help you could try the usual routine we suggest for a flare - see this link - so up by 5mg - and as it’s not certain that’s what it is then only try 7 days. After that time drop back to current regime.
That should be enough to ascertain whether it is PMR or not… if the increase helps, it probably is, if it doesn’t then it’s probably something else.
Hi DorsetLady. I was hoping to hear from you. I try to explain my situation further. It strikes me as unusual too, that serious neck pain could generation the sever eye pain I have when it hits. I am familiar with Cluster Headaches. They are known to strike one side of the head. Mine is right side. Clusters begin in the eye, and then can hurt the neck too. In this case that right eye receives the torment but the unusual thing is the stiff and painful neck that starts it all first each day. That's not typical of a Cluster. So, one my concerns is whether this hints at Giant Cell Iteratis? - I do appreciate the suggestion of testing PMR flare with upping to 3mg or 5mg.
Hi again, if the oxygen usually helps and isn’t this time around, then don’t think you can fully rule out a flare of PMR or even [as you think] possibly the start of GCA.
Maybe try as suggested and try an increase of 5mg daily for a week [going up to 3mg or 5mg will probably not be enough to show much of an improvement].
If you try that, then at least you can report the outcome back to your regular doctor - and then decide the next step.
But just be aware that if it is GCA then you will require a higher dose, but at least it’s a start.
a quick note on cluster headaches. If the oxygenators are helping then that is brilliant, but if they don't (and usually they don't) then use oxygen cylinders. You need high flow oxygen (100% at about 12 liters a minute) and you only get low flow from oxygentors. If that doesn't work there are other things in the arsenal...so not despair, But you need a cluster headache specialist and the provision of an oxygenator implies you don't have one. Sending you every good wish.
my son has severe cluster headaches and that was the figure he relayed...it has to be high flow..around 12 liter a minute is recommended...I think even up to 15 liters a minute.
Hi Karenjaninaz. Cluster headaches, often referred to as "suicide headaches" due to their intensity, are excruciating headaches that occur in cyclical patterns or "clusters." Oxygen therapy is one of the most effective treatments for these attacks. Kind of a lifesaver for many sufferers. I would love it if you respond to what I write here. From what I understand, why It works is - Pure oxygen (100% oxygen) inhaled at a high flow rate (15 litres/min) can halt a cluster headache within minutes. Oxygen constricts dilated blood vessels in the brain and reduces inflammation. Oxygen therapy works best when started at the onset of an attack. It doesn't prevent the headaches but aborts it before it is full blown
That’s interesting as I never heard of that therapy before. A concentrator will not make 100% but a tank will; the concentrator just extracts ~ 97% from ambient air.
I trust you use a face mask to deliver the oxygen not cannula.
Thanks for your interest and concern. Yes I use a rebreather mask attached to a cylinder filled with 100%. I have the cannula as well but have never bothered with it, thinking there is too much regular air getting sucked in with the oxygen supply.
Thanks for responding. I do breath only from cylinders @ 15litres a min. And since that seems not to hit the mark, it does make me wonder whether it isn't Clusters, but something else. And thanks for the best wishes.
there are some injections you can get...and some drugs, of course...keep going back...there really are a lot of different things you can try (some with unpleasant side effects but better than the headaches...I do wish you well.
"It strikes me as unusual too, that serious neck pain could generation the sever eye pain I have when it hits"
Depends what is causing it - if a nerve is being trapped then it could well cause such pain, of both sorts or if it blood flow that is being compromised then you could be getting ischaemic pain. You say "not yet as effective" - does that mean it DOES improve a bit?
Hi PMRpro, The 'effective' term did suggest a comparative, when actually I should have said oxygen does take the edge of the cluster headache but is not doing so with the current enigmatic recurrent neck/eye pain. I am typing during one of my happy phases when there is not pain.
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