Having felt pretty unwell for the last 2 weeks with no energy and sleeping a lot through absolute necessity accompanied by viral feelings throughout my body, I experienced a frightening and severe pain at the base of my skull yesterday. Nothing had any impact on it - even left over Tramadol. I have not raised my Prednisalone dose of 5.5mgs during this period having been assured by the Endocrinologist that my pain was Pred withdrawal. I am aware that my Adrenal function is below par through the Synacthen Test. Out of desperation I took 7 mgs in total yesterday and experienced relief within about an hour. I have just woken at 5 am because the pain is back and have taken 7 mgs earlier than I would take Pred normally.
You can imagine my terror at the prospect of a long haul flight in case this is GCA related. We are due to fly on 29 March ( Australia). The grandchildren will be so disappointed if I can’t go. I am hoping that this is a PMR flare perhaps. 2 mgs wouldn’t relieve a GCA headache surely? Again I can feel it easing.
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SheffieldJane
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Oh no I’m sorry to hear you’re not feeling well. I’m currently at 5mg but if I’m feeling badly enough to want to increase it, 7mg usually has me feeling pretty good within a couple of days. I’ve had two bouts with GCA and in my case it took at least 40, usually more, to tame that monster. I hope you’re feeling better very soon. Grandkids are everything aren’t they? 😊
I think I would ring your rheumy/GP/ endo and try to get this sorted PDQ! If no help maybe A and E, you know your own body do not take a risk! Let us know. X
I know that you also suffer with problems with your neck as well .Are you certain headache is not related to this .
When my neck is playing up I get a burning pain in neck and dull pain across forehead nothing appears to help re pain relief for long .
GP says to take paracetamol and ibuprofen but like many of us I dislike taking to many meds.
I can usually tell the difference between Neck and PMR as my neck cricks and when it does I do my neck exercises 3 to 4 times a day which helps. I am sure you have tried all of this .
I would seek medical help as soon as possible to put your mind at rest otherwise you are only going to stress yourself out which will make things worse
My imagination had catapulted be to being in the air half way to Sydney experiencing the onset of GCA. Hydrocortisone syringe in my bag, maybe all the emergency Pred I can muster? If they would let me fly. 🤯
All I can get from doctors at this stage is educated guesses. Sometimes not as good as the ones on here.
Use ranitidine if you don't want to use a PPI - I had a week of high dose NSAID infusions last spring from the rheumatologist, he insisted on something (omeprazole was the default here which doesn't need a script, strangely ranitidine does!). I was fine.
Since I came down with PMR I get a lot of headaches, though they’re migraines. It is scary when you have to worry about getting GCA. I can’t offer any help, just commiserating. I also worry about taking trips when I’m not feeling ok. I hope you get past this and can see your grandkids!
At my visit to the chiropractor yesterday and new found neck probs he was surprised I didn't suffer with headaches - I did suffer terribly just before and leading up to PMR diagnosis but pred resolved mine. Only had what I'd call a couple of normal ones since. Wonder, with your neck probs, if something similar is reason. Hope it isn't gca. Sending best wishes x
Hi Jane
An Emergency Appointment at your GP is in order l think to see if he has any ideas what could be going on. Plus ring the Nurse/Secretary of your Rheumy/Endo to see what they think but try & see GP in the meantime.
Thank you everyone. I woke pain free at 7,30 am after taking 7 mgs at 5 am. GP is not knowledgeable or interested. Rheumie favours Methotrexate, Endocrinologist is concentrating on Adrenal function. I have lost confidence in self management due to their collective input. I feel that it is my call to decide whether I was simply not on enough Pred or whether the PMR has begun to morph into GCA. No symptoms except the head pain in the bulge of my skull, relieved by 2 mgs of Pred. I am a nervous wreck.
I'm in the same position and feel I have to manage things on my own. Every GP/Specialist has a different opinion on how to (mis)manage PMR.
I recently increased from 10 to 15 mg over a concern that I was either in a flare, or GCA was lurking around. I had a bad headache day and night for 2 days (hadn't had a headache in 5 years), plus a raging fever (never have high fevers) and all over body pain. It killed me to go back to 15 mg. It's the highest dose I've been on in over 2 two years. However, I was back to what I call my "PMR normal" in three days. I stayed at 15 for a week and have reduced 1 mg a week. I'm now at 12 mg and doing OK
The difficulty managing things yourself is having enough medication on hand to do so.
Oh Jane. I can only imagine your mind working overtime, trying to sort it all out, and worrying about outcomes. If 7mgs is resolving all the pain, perhaps stay on 7 until someone is able to check you. At this point a trip to you local emergency will provide a new doctor who can shed fresh eyes on your condition. Sounds like the rest of your medical team are of no help, adding to your stress of having to self-manage through these new symptoms.
Try to take some time to calm yourself and breath deeply. You are not alone. Listen to your body and advocate for yourself.
So sorry that this has emerged before your family trip....still a bit of time to get it sorted. Please keep us updated.
Oh dear. Maybe the anxiety you are feeling at the upcoming long flight is causing the symptoms you are feeling. The slightly higher dose of Pred seems to be alleviating things. Try to relax and not think about possible problems in the future that may not materialise. Keep busy with normal UK things so you’re not building up tension. And pace yourself with packing.......remember you can travel with a passport, credit card, health insurance and meds.......the rest you can buy / borrow. Enjoy the lovely sun and family time. Valerie
Whenever I get twinges these days or aches ( not bad pain) it’s always at the base of my skull behind my ear. Over the course of this illness the symptoms seem to have graduated upwards! Rheumy said he’d never heard of such pain and that was that! Do hope you recover before your trip 🙏
That is exactly what is happening to me. Went from knees and thighs, up to shoulders 4 months later. Since then the inflammation is migrating upwards and most recently travelled from the base of my skull upwards along the back of my head (after s stressful time with my family). Not pain per se, but shooting niggles and dull aches at back of skull sometimes.
I too am so afraid of getting GCA on top of my PMR. I imagine others may be as well, or the other way around, when new symptoms emerge.
It’s actually comforting to hear of someone else experiencing the same thing, after my rheumy said no one else with pmr had ever reported (to him) those symptoms! Btw , this guy was a referral for a second opinion at a top Boston hospital!! I wonder if, after a certain length of time, gca is uunlikely or if it can develop at any time?
Morning. I’m so sorry to hear your pains bad in your head. Does it give you a headache with it or is it painful to the touch? Is it the little ‘knobs behind the ears. I ask as I have this problem. In my case it’s to do with my neck problems very painful and headache affects my eye socket. Hope it’s not what you are thinking it could be. Chin up look positive try not to think the worse. Hope it’s better before your trip my fingers are crossed.
Suffolklady, that sounds exactly like what I have including the pain in my eye socket. I’m due to have a scan on the 29th. I’d be relieved if it was neck problems. I’m dreading GCA.
Well, I do have neck and spine problems but with an MRI scan it revealed degenerated discs and just recently had another one but no results. My old Pain management consultant said as soon as I pointed the area out explained the pain that ran a course up and over the top of my head (sore and painful if pressed hard) and ended up in my eye socket which caused the headache. He said it’s more than likely neck problems in my case as it’s classic that it would go to the eyes socket if the lump at the back was painful. He reckons I have a problem from my oppcipital nerve that travels this route. Long story short he gave me a steroid shot in the painful joint by location from feel in clinic. Felt little discomfort but had a cracking headache next day then I had nearly 5/6 months with little or no pain. Had another one since too. Not knowing what yours is I can’t say but it might make you feel better to know it could be your neck. Hope you get it sorted soon Good luck.
Thanks for the explanation. My headaches only start in the evening. I rarely have any problems during the day. When I read your post, it occurred to me that I have a habit of propping myself up on the couch with my head to one side when watching TV. I’m going to mention this to my doc, it might be a factor.
Well that made me smile. The headache descended again this evening in spite of upping to 7 mgs this morning. I took 1 mg of Pred and it sort of dissolved. This is not a recommended way of dealing with a bad head, it was a sort of experiment. You are making jokes! Is the fog lifting ? What a pair! X
Are you on any other medication for neuralgic pain?
I had similar pain for years before GCA , and still get it now from the bulge at the base of my skull , travelling through my neck , often causing a headache behind the eyes.
It was occipital neuralgia , I still get medication for it , and it is aggravated by the GCA/ PMR and vice versa.
If you have any cranial neuralgia or severe migraines they can feel and mirror the signs of GCA/ Strokes / Heart Attacks and Neurological illnesses , and head pain of any sort increases upset stomachs , nausea and can flare up existing illnesses, which is very distressing until properly diagnosed.
I can understand your terror of GCA , especially at this crucial time , and I agree with others , that maybe being run down with low adrenal function etc. and having anxiety about how your trip may be affected by your health, may be adding to the pain causing tension migraines.
You tried Tramadol but it won't work straight away to relieve all the pain unless you take a very high dose , sometimes it can take days to take affect. But it's probably best not to experiment with different drugs and doses unless you have had some expert advice.
Preparing for your trip in the next few days very slowly , then giving yourself a few days rest before you leave will help with the toll of the journey. Plus , getting as much help as you need to pack helps.
But you cannot be totally sure what is going on and your mind is not being put at rest by your GP or Rheumatologist , your worries and the time restriction for a decision are not their priorities. And lack of proper information is making you feel worse.
If increasing your Pred dose is helping now it may be wise to maintain that until and during your trip , if you have enough medication to do so.
So maybe , going to Out of Hours or A and E for assessment will also help. Go early on a week day so if they think you need tests the right departments are open to do them.
They may be able to send you to the Pain Clinic to get emergency help and assessment.
At least , they may put your mind to rest about GCA , and the peace of mind could help relieve the tension adding to your pain and headaches , no matter what their origin.
Take care , and I am sure that you will be comfy in the arms of loved ones in Oz soon. X
Hope you can get sorted so you can enjoy your trip. Not sure but I would have thought 2 mg would not have sorted it if it is GCA related. I really hope things work out for you as I can imagine you are really wanting to see your family in Oz
I am so sorry. I hope you are able to make this trip! (and are staying a nice long time). Sounds like the prednisone helps . Go back to 7 until you are there and then taper back. Maybe a brand new pillow. A warm compress on the neck. some neck exercises. I don't know!!! maybe a lovely dish of ice-cream and some pain meds!! Take care. Be well. Safe travels! ox
5 weeks. Maybe they have the ultrasound machine and trained operators. My son in law could refer me ( and charge, knowing him) only half joking! 😉. I love ice cream, I was never bothered before I turned into a honeybear.
A microbead neck pillow is really useful for plane trips , and wearing shoes you can slip off easily and putting a pair of those foldable slippers on instead.
Putting pressure on the bulges either side with tips of fingers for 30 seconds then slowly releasing waiting 5-10 secs then doing it again for a 3 minutes. Drink third bottle of not too cold water . Then do the same on pressure on your temple , sinus by the eye and the area that dips in in front of your ear , same timings. Drink third bottle water quite slowly again. Rub some menthol rub into your temples , in front and behind the ears , some on neck and a little above the eyebrows , on the nose between eyebrows.
Warm a wheat bag to put around your neck and lean in a comfy position , eyes closed in a quiet , dark space 15 mins. Taking deep slow breaths as you sit.
Have a green tea as you sit a little longer ( have someone make it for you or prepare it before hand .
After this go and lie down for at least a half hour nap . If you just get up and try to keep going the headache will come back.
You can also do this exercise once a day without a headache to reduce the number you get.
This does help your neuralgic head and neck pain wether you are on medication or not.
Make sure your head doesn't get too hot or cold it is a big trigger. Dehydration is also bad . Wear sunglasses in bright light , even inside during these days if attack.
Don't use hairdryers and try not to make quick movements of the neck and head.
Perhaps I could fit in that , your grandchildren would think you were like Mary Poppins when you pulled a fully grown woman out of your bag by the ears.
I've always fancied a trip to Oz so it's quite tempting. Xx
PS: Do you have a little spritz water bottle for your hand bag , invaluable for spraying aching feet , back of neck , joints and burning moon face in the heat or on a busy day. Perfect if you put it in the fridge at night. Handy for the hot sweats at night too!
What a wonderful picture that makes! I do have one suitcase full of Duplo and other toys they left behind. I could ditch those and provide you. Much more fun. 😂
We have lots of onesies and costumes from our festivaling so I could be dressed as anything , imagine their faces if you pulled a full grown dinosaur , tiger or Catwoman out of your bag.
It would raise some eyebrows at Passport Control too , right , I'm off to find my passport!!😂😂😂
I do have GCA and 10 mg knocks it down whenever I flare. If it were me, I would try to relax, take 10 mg for a couple days, and go on the trip. The dishonest side of me would go to a pharmacy when you get there and tell them you left your pred home and need an emergency refill. Get to an a&e(ER) if your eyes get funky.
I feel like I have been driving this bus alone for 3 years so I just generally make it up as I go along . I had a 6 month check up a couple weeks ago and they didn’t even bother to do an ESR. Sad really.
Dear Jane, did the extra pred get you through today? You've had so much to contend with lately and not having trust in your medical advisers plus losing confidence in yourself to manage it makes for even more stress, that PMR dragon has been severely poked. Really hope you've tamed it with the extra dose and can cross that off the list. Roll on Oz and family and cuddles. Please let us know how you are.
The headache returned this evening my total increase is actually 2.5 mgs. Ironically, if anything provoked a flare it was Rheumie and Endo advice conflicting. Thanks! X
It's hard not to panic. Maybe try to do something nice and calming while your waiting - sit in garden watch the birds, write a poem for your grandchildren etc.
I have post-nasal drip and use a syringe with saline solution when I get stuffy, a bit messy but helps. Xx
Thanks. I have Dymista nose drops and I bought the saline solution to drown myself with, you are right, it is messy but worth it.
I am in an engaging battle with about 4 squirrels in my garden and their ingenious attempts to obtain sunflower seeds from the “squirrel proof” bird seed dispensers. They can untie bows in pipecleaners! Amazing. It’s a soap opera. 🤨
Any Update Jane? Have you booked to see your GP? x
I wouldn’t think it to be GCA as a higher dose of pred would be needed BUT you should see your GP now (as you’re going on a long haul flight) I would if only to get your fears allayed. You are stressed about not being able to fly and it becomes a viscous circle which doesn’t help the head. Do you still have catarrh problems as they can be very painful? Steam inhaling is a good way to ease sinus problems too + menthol. Worth a try. If all fails then a course of antis might be needed - either way ask for a course to take away with you. I could never sleep with a sinus infection until I got on antis. Having said all of that the increased pred helped you so might be everything just building up causing your AI to be on the alert - we all know it doesn’t like stress!
Yes the blocked nose and sniffles seem permanently with me now. The severe head pain was at the back of my skull. It does respond to a small increase in Pred but not to painkillers. Good thoughts. The air on the plane is not great, even in business.
So sorry to hear you had such a frightening event so close to your trip. If it's of any use to you, I recently had one of those base of skull headaches that woke me up in the middle of the night. I was scared but it went away and I've not had that type of headache since.
I take an over the counter antihistamine when I fly long distance. I once got off a long flight with the worst ear pain, had to go directly from the airport to an ER... I had a common cold..
I bet once you hug the grandkids you will miraculously feel yourself😊
Thanks Gaijin, back to my normal dose today of 5 mgs and seemed to do ok. I had two days of 7 mgs that dissolved the head pain, literally, I could feel it. I hope that I can maintain at 5 mgs but know how to deal with the head pain, should it return. GP didn’t want to engage with me about GCA fears. I sometimes wonder if my notes say” interrupt this woman, don’t really listen, don’t give advice, tell her to get off Pred”. I get this attitude from the two senior doctors and most of the students. Total waste of time.
I am no expert but just a suggestion, if 2mg is controlling your headache I doubt it would be GCR however I would up my dose by 5mg until after your flight and then do a quick reduction when you arrive here in Oz. The weather is perfect at this time of year so you will feel a lot better once you get here and see the Grand Kids.
👌JQ
PS
Where about are you going as there is a cyclone up north at the moment which will be over by the time you fly but might bring some heavy rain to Perth where I am.
I have had the severe pain at the back of the skull. One of the occasions I had it was when I went onto coated Pred. I can only think that this type of Pred gives a constant amount of Pred over the day whereas the uncoated Pred gives you a spike of Pred initially which is what I obviously needed. By mid afternoon I had this type of headache which I felt was because the PMRGCA hadn’t been dealt with the heavy dose of Pred at the beginning of the day. My rheumatologist disagreed and thought it may have been due to different fillers that the different tablets contained. So I supppose a question to ask is whether you have changed the supplier of your Pred or have used coated instead of uncoated? It was a bit frightening especially as I have had a thunderclap headache and I thought it was that returning, which it obviously wasn’t because the pain from that is sudden and off the scale. I would say that with all the excitement, planning etc it could be a flare and that is why the small increase has helped. It would I feel have needed a lot more Pred to control if it was GCA symptoms. With my GCA symptoms I did have the pain at the base of the skull but also had a burning boring pain at the side of the head that wasn’t controlled by a small increase of Pred. As everyone is very different though Jane it wouldn’t hurt to get this checked out , even if they have suggested methotrexate, that doesn’t solve this query. As many have suggested just for piece of mind it would be good to just check out with your Rheumy. I know it must be awful when you feel that all the medical” experts” disagree and you feel at sixes and sevens- been in that situation as I’m sure many others have been. Do hope that with the small increase everything is settling down and you will really be able to look forward to a wonderful time with your family.
This is really interesting Jackoh, I’ve been getting headaches at the back of my head for the last few weeks. Coincidentally I’ve been decreasing to 5.5 mg using 2.5mg gastro resistant tablets and 1mg regular. Wonder if such a small dose could make that difference! I normally don’t have any gastro resistant tabs.
Thank you for your thoughtful reply. No head pain today and only took 5 mgs this morning keeping 2 mgs in reserve for the headache that never came, fingers crossed! My tablets are the non- coated ones, always have been.
Hi Sheffield Jane...as another Sheffield resident I have been fighting a bug that makes lymph nodes at base of skull and in neck very very tender. My friend (non PMR) had it to. I ended up with a bag of ice on my neck. It has eased but still feel lumpy sometimes. Just a bit of local knowledge of bug that might help you manage issues around it. 🌻
Hi Jane, only just saw your post and you have already had a lot of advice. Hope you got ok with your chat to the doc. Let us know. Prepare in stages for your holiday and have a wonderful time. Linda
Thanks Lee1945. The pain has gone with a small, temporary increase in Pred. I am back on 5 mgs. I will have plenty of Pred in my hand luggage. My GP dismissed my fears.
I don’t want to be forbidden to travel and that is all my Rheumatologist could do.. I appreciate your and everybody’s concern and thoughts. I actually feel quite humbled by it. What a lovely bunch.
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