Funny Head

[Lovetobe]

hi does anyone have head ache like spaced out feelings,im finding it very hard to explain other than I feel not right. Went to docs she said its not GCA wanted to put me on amitryptaline,I declined. Was told to go home and write a food diary gorv2 weeks. Had pmr for a year now and I'm slowly tapering now on 6mg could it be anything to do with adrenal stress ?tks

[Rose54]

Hi I’m back up to 15mg and have that funny head.

Comes over me out of the blue feels like pressure in my head but not a headache .

I wonder if it’s related to anxiety which l do get with the Steroids

Don’t know about you but l also am unsteady on my feet like one of those toys.

Weebles wobble but thay don’t fall down ..

Going back a few years

[Lovetobe in reply to Rose54]

Hi Rose 54 tks for your reply, yes I remember getting a head like that when I first started steroids at 25 mg, hyper and like I needed to eat. That did go away as I lowered. I'm not wobbly on my feet thankfully, but as you say like right now its like pressure in my head, just weird and slightly worrying x

[DorsetLady PMRGCAuk volunteer]

How does she know it’s not GCA! Any tests done?

It could be adrenals, most common effects are fatigue, lightheadedness, dizziness, anxiety -does that sound like it?

But any new head issues should be fully investigated- doesn’t sound as if yours have. Obviously if it gets worse you need to seek further advice -and please keep us informed.

[Lovetobe in reply to DorsetLady]

Hi Dorset Lady, She took my blood pressure looked in my eyes and felt around my temples 🤷‍♀️ she was a bit annoyed because I wouldn't try the amitryptaline said it sounded like tension headache or migraine.I guess it is light headed feeling but heavy in my head and spaced out.

Just taken my BP it is a little high, but I am stressing a bit.

I will ring doc again and ask for 2nd opinion?

[DorsetLady PMRGCAuk volunteer in reply to Lovetobe]

She might be correct about tension headaches -but as you have PMR thought she might have suggested ESR/CRP blood tests to check inflammation levels. I would have thought that was obvious thing to do, but heigh ho. It’s natural to think of GCA first, so best to rule it out…for your peace of mind.

High BP won’t help either, so suggest you monitor things -but if not happy do follow it up with surgery.

[Lovetobe in reply to DorsetLady]

Thankyou Dorset Lady, taken bp again and its normal.Just read my doctors notes, she said "felt temples arteries felt normal "

[DorsetLady PMRGCAuk volunteer in reply to Lovetobe]

Good BP reduced.

Temple arteries - as PMRpro rightly said they aren’t always affected -even though they seem to be the most talked about. But that’s because they are close to skin and can easily be seen.

Mine were never affected, but others were!

Just be sensible without getting paranoid-and see how things go - but if you want a second opinion from another GP in surgery then ask.

You are quite within your rights…and I would ask for ESR and CRP levels to be tested

[Lovetobe in reply to DorsetLady]

Thankyou I will ask for esr crp tests to be done

[PMRpro Ambassador in reply to DorsetLady]

I blame the fact they think the TAB is the truth, the whole truth and nothing but the truth!!!! When it ain't ...

[PMRpro Ambassador in reply to Lovetobe]

And I wonder what she thought she could see in your eyes? And contrary to their image - GCA doesn't always affect the temples. Not saying it is - but she can't know on that basis.

[Lovetobe in reply to PMRpro]

Tks PMRpro for your reply, how do I get tested for GCA and what tests should they do 🤷‍♀️I will ring surgery again in the morning

[cycli in reply to Lovetobe]

could be. get tested at A&E if needs be. Don't know why GP's always prescribe amitriptyline as the blurb inside clearly says needs a period of taking it in order for it to start working. It isn't an instant response fix. I refused also after reading the blurb. We need a more immediate relief.

[PMRpro Ambassador in reply to Lovetobe]

There are no specific tests at this stage - but keeping an eye on your ESR and CRP levels is a good idea. Then it really depends on more symptoms - no-one will take us seriously without something they recognise.

[Lovetobe in reply to PMRpro]

Ok thankyou

[YuliK in reply to Lovetobe]

rmdopen.bmj.com/content/6/3...

This article may be of help to you.

Yulik. 🌷

[phebamom in reply to Lovetobe]

amitryptiline is a very habit forming drug. I was put on it years ago for sleep issues and had a terrible time getting back off it. There is a foggy headed feeling that comes both With GCA and with pred. So, who knows if it is the chicken or the egg. I have days when I get lost in my own kitchen. As far as anxiety is concerned, and everyone with this illness gets anxious; PMR/GCA is just hard to deal with; I take BuSpar. Put on it a year ago, at a very low dose, 5mg per day, and it takes away the constant rumination on bad stuff.

[catdance]

Just thought I would jump in here a minute. All the advice from everyone one here is definitely worth listening to. Especially if your symptoms get worse. I've had those same type of headaches, brain fog and not feeling very clear headed. I found that I was dehydrated. I didn't think so at first because I really thought I was drinking enough water but after a day or so of getting more, I felt relief. Anytime I feel a bit of pressure coming on, I drink a glass of water. Hope this helps but do get it checked out even if it is to rule things out.

[Lovetobe in reply to catdance]

Thankyou Catdance I will try to drink more, good suggestion

[phebamom in reply to catdance]

I just showed up with elevated BUN and Creatinine with blood and protein in urine. My oncologist put on 64 oz. of water per day. I did not realize how little water I was drinking until I started measuring it. My oncologist told me my kidneys were "dry" as dust. Who knew!

[tangocharlie in reply to catdance]

And throw in some electrolytes that you can get over the counter in pharmacies or places like Wilko, if you have adrenalproblems your electrolytes are often out of kilter too

[Blackcat1M]

Funny that I had something similar and the doctor over the phone gave Amitriptyline .

[Lovetobe in reply to Blackcat1M]

Hi Blackwater did you take it without further investigation?

[Temoral in reply to Lovetobe]

I was told it was a typical tension headache...3 visits to docs...also offered amitriptyline and declined...only then, after 3 weeks was the inflammatory blood test taken....called into hosp within the hour...GCA diagnosed and steroids given. Different for everyone, I know, but you may have to quietly insist....

[PMRpro Ambassador in reply to Temoral]

ncbi.nlm.nih.gov/pmc/articl...

Not as if it isn't in the literature!!!

[Blackcat1M in reply to Lovetobe]

No because I knew something was not right it took four visits three to first who insisted it was a rash and gave me steroid cream, and 2as told don’t come back take a photo.Then the lady doctor took one look and said classic shingles.

I have lost all faith.

[Bridge31]

I often have that feeling. Yesterday in an overheated room it was really bad. So difficult to describe to people. I’m currently on 5mg and intend to stay there until at least November.

[Lovetobe in reply to Bridge31]

Hi Bridge31, its just been permanent past month started a week before I dropped from 6.5mg to 6mg, I had been on 6 for 6 weeks , im going to ask for inflammation bloods just in case

[Hidden]

I'm on 3mg, down from 50mg 12 months ago. Every reduction step down that I take results in the tight head, brain fog n the occasional headache. Ive come to accept those as the price I pay to get my adrenals working again. I slow my life down, I sleep a lot and often enjoy the brain fog as a little bit of relaxation being forced on me. After a day or two I'm fine on my reduced dose, wait a few weeks and then do it all again at the next 0.5 mg reduction. Down to 2.5 mg next week.

[Temoral in reply to Hidden]

That's pretty fast...Good luck 🌈

[Jsaoughs in reply to Hidden]

Exactly what happens when I taper prednisone; brain fog, fatigue worse, sweats, muscle aches; then a few days later gets aBit more tolerable. I so want off

Of these steroids.

[Harrigan]

I’ve had headache for 2 Years

[AshPen9]

I should say first, Lovetobe, that I haven't got PMR but Spondyloarthropathy, a form of inflammatory arthritis, that was initially diagnosed as PMR. Untreated, or when I don't have sufficient Pred (like now), I have a permanent headache, which I also find really difficult to describe. It's mostly like a tight swimming cap on (parts of) my head, in the centre of my skull, often going up from the base, but sometimes nearer to the front. It also feels heavy. My rheumy says it's caused by the inflammation in my neck. This may be nothing to do with what's causing yours, but I thought I'd mention just in case. Of course you should get it all checked out. Hope it goes soon!

[AshPen9]

Thanks for that Dad2Cue. I was told that I have axial and peripheral Spondyloarthropathy, but I don't have much in the way of joint pain. I told the rheumy the other week that I only have 2 of the 6 or 7 symptoms listed on the NASS website, but he said that the diagnosis stands. Apparently I have high IGAs, whereas with PMR I would have high IGGs. Initially I had really bad hip, arm, shoulder pain, but after a couple of months and before pred this more or less disappeared. Main problems now are fatigue and the constant headache. There is some buttock, shoulder, neck pain, but bearable. Initially he said it would be a few weeks of a job on steroids until immune system reset. Then he said it might last for 12 months, or maybe for life,and put me on Hydroxychloroquine. That is only having a small effect if any. After three horrible months on only Hydroxychloroquine I was then allowed steroids as well (plus increased dose of Hydroxychloroquine), and was managing nicely eventually on 4mg. He had said try that with the Hydroxychloroquine for 6 months and see where we are. However I had to go down to zero Pred for ESRs to be done, and since re-starting, 10mg is not enough. Apparently this may be a flare, or the Pred not doing its job for me any more. If that's the case I will have to go on to Mtx or Sulfasalazine, both of which he said I 'don't want to know' as they are strong drugs. How did you get rid of your headaches? Spondylo plus PMR sounds nasty. What are your main symptoms?

[AshPen9]

You've really been though it, Dad2Cue, haven't you, and at a young age as well. I'm 67. The rheumy thinks my mum probably had it as well. Unlike you I don't have joint damage, in fact I don't feel as it's affecting my joints very much at all since the initial couple of months of horrible pain, except for my neck, which wasn't great before it all started. I said to the rheumy that I didn't identify with Spondyloarthropathy because of that, and he said that men have a more typical form than women. I know they don't generally use steroids long term. I think he's still hoping that it will die out in a few months (we are 15 months in!). He really doesn't seem to want me to go on to another DMARD, keeps telling me theyre strong drugs, and to be honest I don't really want to go on to them. I was doing great with the 4mg and Hydroxychloroquine until recently. However he says if it doesn't get under control soon it will probably be Mtx. I haven't got much hair as it is, don't want to lose any!

[PMRpro Ambassador in reply to AshPen9]

Strange - a lady in the UK whose diagnosis was moved from PMR/GCA to ankylosing spondylitis was immediately given the choice of which anti-TNF biologic she would like. It was Sarah Mackie in Leeds who made the diagnosis though.

[AshPen9 in reply to PMRpro]

Got to have 2 DMARD fails, and technically I haven't even had one because the Hydroxychloroquine may have worked a bit (the last week or so of taking it on its own I felt slightly less fatigued). I think he's going to count it as a fail though if things don't improve when I reduce the Pred to 5, which I am supposed to do in the next few weeks. Says Mtx is the next step. Did I read somewhere that Mtx has to be one of the drugs that you try before you can have a biologic? It's a shame that there aren't a few more Sarah Mackies around!

[PMRpro Ambassador in reply to AshPen9]

Maybe the local guidelines for inflammatory arthritis are different and it was a few years ago now. There is a lot of reasoning behind failing the DMARDs I suppose since biologics don't always work forever and you don't go back.

A few dozen SMs wouldn't come amiss in our world!!!!

[AshPen9 in reply to PMRpro]

Thanks PMRpro for all of the time that you spend looking out for others x

[AshPen9]

You've definitely had more than your fair share! Do you have anything alongside the biologic? The rheumy said that because they are so specifically targeted they often don't deal with all of the symptoms.

[Viveka]

Hi

Sorry to reply so late. Great you are getting bloods tested, good to keep an eye out for GCA with PMR. But weird heads are part of the territory for pred and I find they can differ on different doses, even lower ones.

I had migraines before GCA started 18 months ago. They stopped completely on pred, but started coming back when I hit 6mg recently. They are a different feeling to GCA, more queasiness, light-headedness and headache from occipital up to L eye.

Well done for refusing amitryptaline. Some rheumys try and give them out like sweets even though they are a major medication. One tried to give me it for tingling in cheek which I knew from past experience was pred related. Sure enough it went at 12.5 and it was nowhere near bad enough to need medication. She was genuinely trying to be helpful, but I could have ended up on a horrible med unneccessarily. I tried amitryptaline experimentally for a bladder condition years ago and one thing is sure - it will cause foggy light-headedness.

Food diary combined with symptoms sounds helpful, though personally I find there's no instant cause and effect of food = headache. Rather it's probably a longer term thing. Best wishes, Lovetobe.

[AshPen9]

Hmm, think I'm going to have to grit my teeth and have the Mtx, but I find it quite scary. Thanks Dad2Cue for all of your helpful info, and all the best on your 'journey'. The immune memory thing is also scary, but you can sort of understand why it happens, can't you?

[AshPen9]

Will grit my teeth! Don't want to lose hair, let alone do without my glass or two of 🍷. Thanks very much for the helpful advice.

[AshPen9]

I have a full head but very thin 😔. Vanity and all that.