Brain Scan: My GP is sending me for a brain scan. I... - PMRGCAuk

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Brain Scan

SheffieldJane
SheffieldJane

My GP is sending me for a brain scan. I have had a permanent headache for 6 weeks, sometimes pretty strong. I don’t have any other GCA symptoms. Rheumatologist and GP don’t think it is GCA. This headache begins on the right side of my skull and spreads over the the rest of my head, sometimes at the base of my skull. I was treated for a sinus infection, but this doctor doesn’t think it was one. I am also seeing the optician for a look at the back of my eyes ( they water a lot). My PMR still makes its presence felt ( 4 mgs). Blood pressure was 178 over 92, so I have been given Ramipril 2.5 mgs ( side effects include headaches). Any experience of the head MRI or this blood pressure drug would be useful.

128 Replies
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MrsNails
MrsNailsAmbassador

Hi Jane

I’m sorry this headache is continuing to cause issues but pleased they are doing a brain scan.

With a brain scan they are a bit stricter about you moving so there is some kind of guard they use to help you keep still, my Mum had one when they were checking out her Pituitary Gland.

Your Dr can give you something to calm you if you think you might have a problem, you will be sent a leaflet with Information & what to expect

Ramipril - they tried that with me & it felt like someone was cleaning the inside of my head with a bottle brush 😱 so that was stopped & changed immediately. Blood Pressure Meds are notoriously difficult to get the right ones but when they do, you shouldn’t get any issues.

Best Wishes 🌷🌷🌷

Angela

I agree! It took seven different tablets before I got the right one!

I just look at the box, haven’t taken it yet. A persistent cough sounds dreadful. Any recommendations?

MrsNails
MrsNailsAmbassador
in reply to SheffieldJane

It might be fine, it suits a lot of people, leave it until Monday to try it as GP will be around. What dose have they recommended you start on? x

2.5mgs. I am going to a service for my late mother in law and to place her ashes on Sunday, near Birmingham. So I am not taking it until I am back on Monday ( imagine). This will probably throw the 2 week blood test out.

MrsNails
MrsNailsAmbassador
in reply to SheffieldJane

Probably best idea, you don’t want anything unnecessary to add to the weekend, can you change the blood test to a Monday in two weeks?

Safe Journey across the country in this storm. xx

Another storm! ? Yes I had better shift the blood test. Thank you!

You are another beacon for me. Keep calm carry on and look out for others. 🌷

MrsNails
MrsNailsAmbassador
in reply to SheffieldJane

Take Care 💕

So sorry you are in such pain.

Have they given you anything to try help with the headache in the meantime as well?

Just try and rest as much as you can , hugs xx

No, they offered good old Amitriptylin, and I have a small stockpile, I have left over Tramadol and Paracetamol. All three do not clear this headache.

Trouble being if it is Chronic Migraine Disorder , like some of my headache problems , AmyT and Tramadol won't always do anything , or can increase the problem depending on the origin.

The BP meds can give headaches , but they may help if the cause is partly caused by your BP and Circulation , so touch wood with that.

Is your BP usually high , normal or low when you go to the GP?

Be aware , that the BP may make you sleepy , dizzy or cause some flushing , especially at night .

Do you have a home BP monitor ?

This isn't to worry you , it's just helpful to have if you get any unusual or sudden symptoms because you can note down your BP and see if it is the cause .

It can take a bit of trial and error to get the right type, dose and timing for BP medication .

If you have had an MRI before the brain scan is basically the same the only difference is you need to keep your head more still. You can still choose to listen to music and it helps.

Having the scan does make you concerned at first thought but they do use it as much as a way to be sure they are right to rule big things out .

Thank you for this. My blood pressure is always raised, around 148 over 80. I take 50 mgs Atenolol. I was wound up when I got the higher reading in surgery 178 over 92. There were 3 people with coughs and colds in the waiting room and I was imagining Coronavirus at worst and hating them. I do have a home monitor. My OH’s is always raised on it but normal at the GP’s. (?)

The GP dismissed BP as the cause of this headache. He did that follow my finger test ( it did look a bit double, but I was wearing vari- vocals.) It seems extreme to be put on a med for life for one reading. Very lowering. How do they diagnose Chronic Migraine disorder? I don’t get the visuals - I have only had about 6 truly identifiable ones in my life?

Try one Solpadeine and one Paracetamol. Or take two Solpadeine. They work for me.

What’s in Solpadeine? Are we allowed it?

DorsetLady
DorsetLadyPMRGCAuk volunteer

Hi Jane,

Sorry to hear you are still having head issues, but at least they are following it up. Hope you get good news on that.

As for Ramipril, I took it for years pre and during GCA - no head issues.

❤️

Ah, so it is horses for courses. Mind you nothing seems to faze our warrior queen.

DorsetLady
DorsetLadyPMRGCAuk volunteer
in reply to SheffieldJane

My beloved husband always said I had the constitution of an ox - and I think he was correct.

Must be in the genes - not only the Viking ones , but a long long of long-lived healthy women. Just luck of the draw I guess.

Please let us know how things go for you - and hope you soon feel better, you’ve been through a rough time lately.❤️

I wish I was more like you. I come from a long line of flakey women ( sorry ladies but you were).

Sorry to complain so much, I only do it on the forum and to my long suffering OH. My GP’s are not good.

DorsetLady
DorsetLadyPMRGCAuk volunteer
in reply to SheffieldJane

Jane don’t ever apologise for who you are! And I don’t think you’re flakey....and even if you think you are , you give very good advice and support to others - don’t do yourself down girl. ❤️

So sorry to hear you’re not feeling great Jane

Hope it gets sorted soon. Sending hugs. 🌹🌹.

Thanks Sue. This year has been a bit relentless so far.💜

Awake with the head as we speak.

Hi

Hope you dont have to wait to long for MRI

Take Care

Me too! There won’t be a bit of me unscanned.

Brain scan. Is it MRI or CTA.

Are you drinking enough water with your meds.

I had a head MRI recently, because of sudden hearing loss. Audio neurologist was worried that the cranial might have been involved, but all was ok.

Waiting for a hearing aid.

I’ve been taking Ramipril ( Tritace 2:5mg) for years. I take it together with coated aspirin 100mg. ) I feel fine and touch wood no side affects. ...

I have unstable angina pectoris so I’m taking ramipril.

MRI is a piece of cake and no side affects. Just a bit noisy, but earplugs are provided.

It’s all over in 5-10 minutes.

Ask your GP what is allowed for you the day of your brain MRI.

Source NHS 👇

On the day of your MRI scan, you should be able to eat, drink and take any medication as usual, unless you're advised otherwise. In some cases, you may be asked not to eat or drink anything for up to 4 hours before the scan, and sometimes you may be asked to drink a fairly large amount of water beforehand.

Good luck

YuliK. 🌹🌹🌹

SheffieldJane
SheffieldJane
in reply to YuliK

Thank you for all this YuliK. As always on here, I feel my troubles are small.

I am so sorry this is going on and it is only no doubt scary as hell just THINKING about the worst...and we NEVER think about the best do we!! But hoping hoping all will be well and it probably will be. And of course your blood pressure is high..and sorry the meds only add to the headache! could of course be residual sinus stuff. Seems like the combo of sinus, PMR, prednisone and stress could do it. Good of course that you are checking it out. In the meantime... at least a couple times. try the last track on my relaxation ! OH an MRIs are nothing. just noisy. And I am NOT claustrophobic at all but if you are, close your eyes!!! and pretend you are in bed with grandkids making a TERRIBLE racket around you! oxoxo sites.google.com/a/apps.hop...

Thank you Bonnie. Good ideas for taking my mind away and relaxing me. The GP was so grim and brusque. What are we doing to our doctors? He used to be enthusiastic and lovely - diagnosed PMR when I had worn a path to the surgery.

PMRpro
PMRproModerator
in reply to SheffieldJane

Overworked - and, relatively speaking at least, underpaid. And never right ...

Megams
Megams
in reply to PMRpro

~ How true is that - its global :) :) :) ~

PMRpro
PMRproModerator

As Yulik says, a tad noisy with the clunks from the magnet and of course you are in the doughnut - but I just closed my eyes and I'm sure I dozed off!

Be very very sure you have NO metallic bits anywhere in your clothes or anywhere else! And I just discovered you can't have an MRI with some sorts of hair extensions - so if anyone is tempted, maybe a second thought is required? Some forms of mascara also have metal in them too so cut on the slap for the day!

Top tips! I would not have thought of mascara. Apparently sheet metal workers can’t - they must have metal dust in their pores.

sheet metal dust in pores is a pretty scary thing!!!!

DorsetLady
DorsetLadyPMRGCAuk volunteer
in reply to PMRpro

I think they tell you not to wear makeup or nail varnish (depending on what’s being scanned).

Well I am going to look a picture. 😉

DorsetLady
DorsetLadyPMRGCAuk volunteer
in reply to SheffieldJane

😉❤️

Sorry to hear you are going through all this SJ - it must feel like the 'one damn thing after another' trajectory - but the main thing is they are checking everything out. Can't help with the BP stuff - no experience of that - but I wonder if there is still any possibility it could turn out to be GCA after all - but I guess more info might help resolve that. Thinking of you - all warm wishes your way !!

SheffieldJane
SheffieldJane
in reply to Rimmy

That’s what I wonder too, but no jaw claudication. My great Rhuemy doesn’t think so. It sort of fades and intensifies, pressure helps, unlike the tender to touch GCA - stupidly, that would almost be a relief - the sword of Damocles, finally fell. MRI head scans cannot pick it up as we know.Thanks for your wishes.

Are you being washed away by the rain now?

Rimmy
Rimmy
in reply to SheffieldJane

Yes I know the tender to the touch GCA feeling cf. something else - but fingers crossed the most 'inoccuous' possible - but you don't need any 'swords' at all !! Rain has not here been the intense performance in the West as the east. We have been spared the worst of the fires and the floods - but I saw some large 'crickets' around our orchard last week and thought .... well you know the 'biblical' stuff - but hasn't here happened yet in our remote lower southern area of WA. Let us know how you get on XX

SheffieldJane
SheffieldJane
in reply to Rimmy

Oh no plagues of Egypt. We need the patience of Job or Jobe. 😧

Will let you know.

Ohhhh, so sorry to hear this! I hope they get to the bottom of it and get it sorted out!

Thank you. I hope you are doing well and winning.

*laughing* Not sure I'm 'winning," but doing well enough, thank you! Good luck!

👍

I’m so sorry to hear about this Jane but glad you have a good doctor getting you sorted. I had a mri ( no contrast) of my head a while ago- reassuring ok. Had been dreading it-thought I’d be very claustrophobic but honestly fine-think the newish machines are a bit wider too. Definitely noisy but the Operator will chat and tell you what’s going on, you have a mirror above so you can see them, though like the best advice above I kept my eyes closed going in a took a wee while before opening them. Was told it could take 50minutes but literally rattled through the views and was out in 35-again the operator said you could pause at anytime so no pressure. Hope you get your appointment soon.

Ps I just wore a pull on sports bra, loose top and elastic waisted trousers (Hopefully looked better than sounds) so no need for a hospital gown as long as you have no metallic fastenings etc x

Thank you for this! Dare I go out in my at home scruffs? Better than those silly hospital gowns.

DorsetLady
DorsetLadyPMRGCAuk volunteer
in reply to SheffieldJane

Yes - better for you and hospital staff.... and to be honest no-one is going to be judging your sartorial elegance - staff too busy, patients too worried!

Sorry to hear you are suffering Jane. I hope this gets it sorted for you, try not to worry too much.

SheffieldJane
SheffieldJane
in reply to scats

Thanks. My mind is only ranging on innocent causes of headaches - like over- using my iPad.

scats
scats
in reply to SheffieldJane

That's often the cause of mine.

Hi Jane

I had head MRI last Sunday at LGI. I wore leggings, vest and jumper but being so still for so long felt a bit cold. Mine lasted about 30 minutes, also had contra dye. Very noisy even with headphones and one bit felt like in a washing machine. Because you need to stay so still make sure you are comfy. I had my arms by my side but wish I'd rested them on my tum! You can buzz them to stop if you want. Don't worry it's not scary, just all so amazing!

Hope you get your appointment soon.

Marlene x

Thank you Marlene, you paint a very clear picture. I will follow all of this including the wardrobe.

I seem to be having an annual MRI - including a contra dye which just involved drinking a lot prior to the MRI. It's all absolutely nothing to worry about, headphones which play hell with your hairdo and lying still a bit boring. What tickled me was before the very first one I had I was told to bring some favourite music which they would play for me during the procedure. Well that was a laugh, couldn't hear anything for the noise of the machine but I suppose it's the thought that counts!! Clearly none of the staff had never actually experienced the procedure. I just lie there now and think beautiful thoughts. It will be fine and we're all with you.

I am already in old leggings a vest and a baggy jumper, wearing no jewellery, no make up, no nail varnish, so having my hair like a bird’s nest will just finish the look. 😐

Thinking of you today Jane and sending up a prayer for you to get a green shoot of something in your life...a step forward ❤️

That is lovely bunnymom. Thank you for being with me on this journey.

It is a journey indeed.

Oh its good its being checked. Very wearing to have that headache all the time. Hope it doesnt take too long for appt. Xx

It is tedious. I am getting ver snappy with my long suffering OH.

Oohhh, i know that one!!!!! But sometimes something has to give! You take care x

Hope you get some answers soon, it always helps when we know what we are dealing with....Keep us posted...

It does help to know.

Sorry also meant to say that I would have it again in a heartbeat but hopefully not as so expensive.

Hi Jane, sorry to hear you're having trouble.

Firstly the Ramipril, I've never taken it but used to give it to patients and you're right, a side effect is headaches, also a cough but obviously not everyone gets these. Try it and see but there are alternatives.

As for the brain scan, I was sent for one when my eyes were playing up. I had actually talked myself into a pituitary tumour!!!! But they looked at my optic nerve too and result was clear. Turned out my rapidly diminishing sight (and resulting headaches) were due to pesky steroid induced cataracts.

The scan itself is very noisy as are all MRI scans but the worst thing for me was the head guard!! They pad around your head then put a guard around and basically close the lid, I had a momentary panic as I am claustrophobic, but I shut my eyes and thought happy thoughts. It was actually ok....

Try not to worry too much, let us know how you get on xx Linda x

That’s helpful, thanks for the warning!

Did you go privately? I had forgotten. I hope I’m not presented with a big bill. Nothing would surprise me. I will have to pay the optician to look at the back of my eyes, yet I was told to do it by my GP. No referral forthcoming.

Better to let the optician look at the back of your eyes. Many of them these days have good scanning machine to take a better look. May I ask what mg of Pred you're currently taking and how long have you had PMR? Can GCA niggle on without us realising it until it gets really bad when it becomes an emergency?

Do hope you get sorted soon and feel better.

Kindest regards

Anne

Thanks Anne! My Optician is well equipped too. GCA is always at the back of my thinking. I have been diagnosed for 4 years and am on 4 mgs which just about covers it. Having read the recent post about Steroid withdrawal ( now pinned, by PMRPro) I do have those symptoms.

I've started my tapering too. From originally back in Dec 2019 wheb first diagnosed with PMR prescribed 15 mg, reduced 16 days later to 10 mg due to lack of sleep on the 10 mg for 21 days and now my rheumatologist told me from the 1 Feb taper by 1 mg per month. I don't care about the aches I get as they go away, but very anxious about getting GCA as I only have the sight in my right eye....just was wondering what symptoms you are getting to make you think you could have GCA

Thank you for your reply

Anne

I think it is not GCA because I have no visual symptoms, no jaw claudication, no pain when chewing, my head is not tender, my bloods are normal, my tongue is ok. I share your worries though. I think the jaw would be the clincher.

Could be stress causing your headache. We're our own worse enemy for worrying. Just wish GCA wasn't linked to PMR. Hope your tapering continues with no probs.

Anne

Maybe some statistics would help us?. I bet it is rare - we just make it sound almost inevitable with PMR. I read one in 5 somewhere.

Yep, 1 in 5 it is. We just don't want to be that one though do we. When I read of a lady last week that went totally blind from it as her doctor missed it I think, or she wasn't seen soon enough. Two of her daughters posted a pic of the three of them. I can't stop thinking about that poor lady and how much her life will change now. To be totally reliant on someone else for everything and losing our independence would be awful. Our eye sight is so precious.

I know it’s hard and especially for you, at least you know all the warning symptoms. Some people and even some doctors do not.We need to live in the moment with PMR without regretful looking back and fearful looking forward. Not easy I know. Be safe. 🌹

Yes, my heart truly goes out to that family because the Mom is alone. When I lost the sight in one eye a friend gave me the telephone number of a man in Maine who went completely blind. He was amazingly upbeat and insisted his life had not changed that much...still listened to books, walked the treadmill, went to meetings...BUT he attributed all of the normalcy to the angel of a wife he has. He said I do everything I used to...someone just gets me there. He never had to ask for help he said, she was always there at his elbow.

I do think of all three of them and how they will handle this~~I am alone and I know as a Mom we hate to turn our children's family life upside down too. It seems like there is a lot of love there.

I am afraid that's about the fourth case I have seen on the forum in 4 years. The anguish in the families is very distressing and does make me overly vigilant when someone with pmr refuses pred. It's heartbreaking to hear the stories.

Seriously, people refuse to take Pred. Surely they can't have been told about the potential risk of the dreaded GCA. We all hate Pred. but they're certainly a wonder drug for getting rid of pain and inflammation. Because Pred are so cheap no research has gone into finding a drug which would have less side affects. Those poor, poor people.

PMRpro
PMRproModerator
in reply to Staplehurst

You will soon learn there are some people who arrive at the forum insisting they will not take pred for PMR, there must be other options and what are they. It is, however, very unusual for that to last long once it is explained to them what they are risking. But very few doctors, especially GPs, tell their patients anything about the potential risks. They may not be aware or they may be wary of frightening patients. Either way, it does the patient a disservice.

It isn't entirely true that there are no options besides pred because it is cheap - until you know the mechanism of a disorder you cannot find a cure or better management, There are other drugs that would work but, like all new drugs, they are very expensive and are accompanied by considerable risks themselves. In fact, low dose pred isn't particularly risky. even long term.

Staplehurst
Staplehurst
in reply to PMRpro

Thanks for that.

So sorry to hear you are having bad headaches for so long.

Will keep everything crossed that all will be ok when you have your scan.

Lot’s of love,

Bird ❤️

Thank you Bird. It helps to have the support around us doesn’t it?

Jane I am as sorry that you are in so much discomfort as I am glad that they are doing a scan. I will certainly keep you in my prayers and be checking on you. I don't think you will mind the test at all...I've had two types. Just lie still and envision where you want to take that next vacation. Take care 💗💗

We need an update on you in a new thread! ♥️

Reciting in my head helped the full body PET scan - carols, hymns, poems.

Hi Jane what a bummer. I read all the responses and am worried if I share my experience it might make you scared...so #1 if they offer you a Valium TAKE it.... if they don’t offer it ASK for it.

When I was going into what felt like Spock in his funeral casket I kept telling myself it will be fine. They had put elbow pads on me and I was 100 lbs less than now. I just wanted to close my eyes and daydream I was somewhere else but the tech kept talking...🤔

The gal kept saying ok we are done with the first one the second one will be 20 minutes. I finally asked her to please stop talking....so ask how long up front and if their chatter bugs you tell them shhh.....

When thy finally let me out I sat up ripped off elbow pads and was hyperventilating. She said YOU should have said something we could have moved you and stopped. I told her they would never get me in there again.

Now we need to look at it was a long time ago and I am quite sure the machine are larger than a sardine can flattened and yes I freak out in elevators also.... Elevators were so bad for me as a nurse that I would put the patient in and tell her I would be right down running the stairs and met her just as elevator arrived. My boss found out so couldn’t do that anymore.

I shared all of this to simply say....TAKE THE VALIUM.....

I can relate to those feelings and a Valium would be a good idea. I don’t want the technician to talk either, you need to get into a meditative state and that brings you back to where you actually are. Brave of you to tell them to be quiet while you’re at their mercy, in Spock’s coffin. 😂

Looking at these posts, and if it was me I would say before they start, "I think I`m going to try to do quiet meditation"....hopefully they will get the hint and not talk!...

Good luck...

No no I love each and every one of them and the dear authors. I just don’t want to be the cause of increased work for the Mods.

No I meant the hospital people before you go in the machine!....it has said it will be noisy, so just suggested the hint first.....

Got you!

The machine I went in this time was roomier than before and they didn't speak to me at all. Unless I was nodding off and didn't hear them. My younger sister can't even talk about mri's and says they would need to fully sedate her.

I don’t think I am scared. I had a full body PET Scan just before Christmas. St James hospital in Leeds looked so pretty and Christmassy and was almost deserted. I passed the time singing carols in my head, it turns out I know a lot of them. Definitely eyes closed all the time.

I'm sending good thoughts and love across the pond. Follow suggestions you've already gotten for mri. I fell asleep but there is noise and can be a little difficult being still for extended time. Whatever it is, you will deal with it with flying colors because you are a warrior, and that's what we warriors do. 💘

I guess we are warriors, even wounded ones carry on. 🤨

Hi, I had similar symptoms, including sinus and eye pain. Headaches were unbearable for 6 weeks. I saw an ENT consultant, had all the tests for GCA including an ultrasound. I also saw a Neurologist who suggested that the pain was being caused by the pain relief tablets that I was being prescribed for PMR, and the Headaches which were codeine based. I had to go cold turkey which was horrible, but 2 weeks later the headaches subsided.

That is interesting. I know about Codeine headaches. I wonder if Tramadol is the same?

PMRpro
PMRproModerator
in reply to SheffieldJane

Headache is listed as a common potential side effect.

Everyone is different - and interactions vary from person to person too,

verywellhealth.com/tramadol...

Any more than 2 doses and I itch like crazy. It’s never done much for PMR pain or the headaches. Just placebo effect I think. Thanks for the useful information.

PMRpro
PMRproModerator
in reply to SheffieldJane

If I were looking for placebo effect it wouldn't be with Tramadol ...

I am on Amerdofine for blood pressure seems to work no headaches

I will make a note, thanks!

Just close your eyes before you go in the tube and don't open them till you come out. Put your mind somewhere nice like a beach . It's a bit noisy but nothing else . Do yourself a long shopping list lol

Dear Jane, so sorry to hear of your problems and I hope it will all be resolved and nothing to worry about at the end of all the investigations. Constant headache must be very draining and demoralising.

I can't offer you any useful advice as I had no relevant experience, but I am sending you my love and best wishes.

Thank you violet. X

Dear Jane. , I can’t add to all the previous comments about your headaches but I’m sending my best wishes to you. You will be fine xx❤️

Thanks York. It’s true, I always am fine!

Brain MRI is fine, noisy but just lie back and think beautiful thoughts....it seems a long time and different phases make different sounds. I was anxious that I might cough but they give you a buzzer to hold & just repeat that section which adds approx 5 mins. My MRIs were due to an unexplained & unwitnessed collapse and they revealed a small cavernoma ( collection of blood vessels) which could have caused a seizure. I now take anti seizure meds which together with being seizure free for a year has enabled me to get my licence back. Cavernomas, depending on where they are can cause various symptoms headache being just one. Having said that they are fairly rare, so I’m not suggesting that that’s what you have!

I also have high BP and having tried various meds I find Ramipril the best. I take 2.5 mg twice a day. I think I do have a Ramipril cough but I’ve been a cougher all my life!

That is useful. Thank you very much. Glad they found the Cavernoma, it sounds like a life enhancing result for you.

Please do not be concerned about the brain scan. It is fine and takes only a short time.

It will be good to find out the results and should put your mind at rest. It will allow doctors to rule things out!

I wish you well with this and please relax and do not dwell on the unknown as you will be fine!!

That’s kind thanks Lee.

It may well be your high blood pressure causing the headaches

My GP said not and yet I thought hypertension caused headaches.

They always say no symptoms for high BP but I had headaches and my eyes felt pressured when it was really high.

Gosh I get that, an almost unbearable feeling as if they might burst. ( eyes).

So sorry you’re going through all this Jane. Coming down on the steroids I know has not got better for you ( as we might imagine) but has thrown up more queries. From past posts you seem like someone who thinks through all the negatives first and then copes extremely well on the day( no flakiness in sight!!) It’s good this is being investigated for peace of mind and another box to tick. I’m sure with all the advice here you will cope really well and you can move forward in the right direction. Take care xx

Yes I recognise that. So far everything has been fine. Thank you!

Sorry you're having such a tough time Jane... Hope you get a definitive diagnosis very soon....

Take care tomorrow...

All good wishes.... Lena 🤗

Thanks Lena! It does seem to be my turn.

So sorry to hear about the headaches - they are with you all the time. Let's hope you find the culprit soon. Just had a brain MRI last week, and carotid and neck. Took longer that way. They said to keep my eyes still and that was probably the biggest issue. Kept them closed, but I tend to wander around even then so had to remember to keep them still. Got there because Rheumy does not think GCA, Opthalmologist finds no reason for double vision and Internist took it from there. Looking, looking. Wish you well and let us know the good news soon.

In my whole body scan my eyes would not stop fluttering at first - if anyone had said don’t move your eyes, they would have fluttered throughout.

Hi Jane

I have MRI brain scans annually. I do have GCA /PMR but after 18 months on high dose steroids Professor Dasgupta said I shouldn’t be getting headaches and he didn’t think they were GCA related. My BP was/is always elevated but I can’t tolerate any of the ace inhibitors or beta blockers and was put on Spironolactone and Half Securon which works and suits me. As my GCA/PMR improves (4mg) I still get visual impairment.

I do have MS - which is in my family. Since I moved to Yorkshire my new MS Consultant thinks the visual impairment I suffer might be a form of migraine. He’s waiting to see my Southend scans first and will call me back to discuss.

I am not fond of the scans as I am claustrophobic of the face but needs must. I don’t accept anything to calm me down before the scans as I don’t want to stop driving (I care for my husband). I just concentrate on my breathing and after a trial start of them putting the guard on my face I can get a good breathing rhythm and just concentrate hard on it throughout the scan. I always tell the technicians how anxious I feel beforehand and they are lovely and helpful. Afterwards I feel it wasn’t worth the fuss but I can’t help it - the more Scans I have the better I get.

Let us know how you get on and remember those deep breaths. x

That is all helpful detail Telian. X

Wear earplugs if you're in a 'closed' MRI machine as the beeps can be loud and a bit nerve racking. Also if you are nervous about being in a 'closed' MRI machine it is REALLY helpful to have a nurse of someone there with a hand on your leg or arm...very grounding.

Can't offer any useful tips, SJ but sending you comforting hugs and hoping you get an answer soon. Pain ain't normal is my wisest contribution.

Thank you so much. I woke without this morning. Then it’s starts up as a pin point on the top right of my head and begins to spread. Not like GCA at all, I imagine.

Did you notice our power cut at about midnight? It didn’t last very long.

Good luck sheffieldjane I know the worry is worse than anything, is any of your medication causing headache?

I know I was on medication for kidney infection and side effects was headache because it put pressure on the skull which caused the headache. ( turned out i didnt have kidney infection ) thinking of you🌻

Unless it is due to tapering Pred. I am not on anything new. I was prescribed Amoxicillin for two weeks because the GP thought it was a sinus infection. I had, had the headache for about 3 weeks then.

Thank you for thinking of me.

Rimmy
Rimmy
in reply to SheffieldJane

Interesting SJ I also attributed my face/head pain initially to sinus troubles - thinking an allergy (as there was no sign of actual infection) - was the likely cause. So I googled every plant in my garden - especially our Red Gums (natives to OZ) which had large white flowers which dropped all over our driveway - so I thought 'yes' !! - THAT is the cause of my throbbing face, head and eyes. Strangely though nobody anywhere I could find had reacted to these flowers in this way - and of course I was barking up the wrong tree only to discover I had PMR first - then GCA later - or of course in retrospect actually likely 'just' GCA. Thing is we are then quite fortunate if you think about it to get any dx in a timely fashion as many PMR/GCA 'symptoms' are often at first quite confusing - first to 'us' and then to any diagnosticians - BUT surely THEY are the ones who should be able to determine 'things' promptly.....

Hi SJ

I have had GCA for 7 yrs. My symptoms were 'dull' headache, which moved over scalp,but not debilitating, and a 'tingly' scalp when touched. No other symptoms. Took 10 weeks for Dr's to diagnose, and that was only after 2 small lumps appeared on my right temple. I take Ramipril, about 10 years, and no problems, but with your 'high' blood pressure, which I would suggest is the cause of your headaches, I would take 5mgpd.

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