All at sea

[NickWarwick]

Some of you were kind enough to help out a few weeks ago. In summary a flare which i thought i had largely got over.

Started a drop from 1.5mg to 1mg and fell off the edge of a cliff. Upped the dose for 10 days and then dropped back to 2mg. OK so far in terms of pain management.

However i am now having a miserable time with my head.

At intervals i feel very spaced out. Unsteady but not like i am about to fall over , more along the lines of being on a boat. Slightly panicy. There is a pressure in my head but not a traditional headache. A slight disconnect between my eyes and brain of sorts (but i have had my eyes checked and they are fine) and fairly frantic brain activity when i shut my eyes at night.(I am going to say rapid eye movement but that could be completely wrong)

These are all new symptoms for me i think, after three years of being ok..ish. I would say existing not living though, as as a summary.

This is obviously some kind of stress related issue as i was on holiday for a week and felt absolutely fine. But at work it is very tiring and depressing, also leading to painful neck and shoulder problems.

Might be bad posture leading to neck pains which leads to head problems but i am guessing the narrative here is adrenal ?

Does that sound plausible. And if so then how long is this going to take to sort itself out ? I cannot keep going like this indefinitely. I have to keep working unfortunately. Everything is unravelling.

I cannot get a GP appointment (absolutely woeful service locally) so i have booked a rheumatologist consult privately, which is in about three weeks time.

Nick

[PMRpro Ambassador]

I think if it were me I would try a few days of more pred to see if that helps all those symptoms. If you need more pred to be able to work - you need more pred. BUT, if the GP can't do their job (and that is appalling) it might need to be a trip to the ED if more pred doesn't work its magic because those symptoms are concerning to me at least.

And yes - I agree with Snazzy, at the very least 111 ...

[SnazzyD]

I would call 111 if you can’t see your GP. On the face of it, it sounds like an inner ear issue, the all at sea feeling is a classic symptom. You are feeling pressure too and imbalance between the ambient pressure and inside your ear can cause havoc with balance. If your holiday involved flying or being sea these can also set off this type of thing but each for different reasons. There are medical conditions that cause this too but in the first instance there is short term medication that will alleviate symptoms. The medic needs to decide whether it’s a case of alleviate and wait or alleviate and do other investigations. I

[NickWarwick in reply to SnazzyD]

OK thanks. I was assuming adrenal problems. Hadn't thought of ears. Holiday was in the UK, so not a flight issue.

I am reluctant to take more pred for the time being. Its taken too long to get to this point and i dont have any obvious joint pains now.

Thanks. Nick

[DorsetLady PMRGCAuk volunteer in reply to NickWarwick]

Agree with others you need medical advice now -not in 3 weeks or whenever,

[NickWarwick in reply to DorsetLady]

i will try again to get a GP appointment. Although i have failed for the last two days. Shouldn't be this hard....so depressing

[PMRpro Ambassador in reply to NickWarwick]

They must keep some for emergencies - if they don't, they should. My daughter works in the ED - so many proper poorly patients arriving because they can't see their GPs. I would turn up at the practice and tell them you want an appointment assigned NOW, even it is for later.

[DorsetLady PMRGCAuk volunteer in reply to NickWarwick]

Yes it is depressing- and unnecessary….

[BLUEPMR in reply to NickWarwick]

Bad enough feeling so ill without the battle to see a GP I guessed you were here in the UK when you said you had problems getting an appointment it's appalling my heart goes out to you.

[SnazzyD in reply to NickWarwick]

No it isn’t a usual symptom of low adrenal function. Feeling weak and dizzy yes, but that being on a boat feeling and the closed eyes issue, no. I have suffered from occasional labyrinthitis a number of times with no apparent cause, long before Pred and nursed people with it. What I can say is IF it comes on acutely and it can do in seconds, you will be incapacitated. It is deeply distressing and can cause intractable vomiting if it is severe. Your neck pain whilst it could be coincidental, could be connected. While my GCA was revving up and I had neck pain too, I became more and more susceptible to motion sickness in the car. Try 111.

If you are getting nowhere (but you really should try) a good symptom remedy is Phenergan an antihistamine that is used for sea sickness. You can buy it over the counter as capsules in two dose choices. They can be a bit strong and make you very sleepy, so I use the liquid for a lower dose. The pharmacist should advise you. Do not drive while you are like this though.

[SheffieldJane]

It all sounds very plausible ( workplace stress) and very like me before diagnosis of PMR and as it turns out GCA/ large vessel Vasculitis. Sometimes I couldn’t form a coherent sentence. Make sure you get a raft of tests. I have cervical Spondylosis and this can cause neck pain, balance problems and even blackouts. This would need an X-Ray , I think caused by intensive screen work and bad posture. Then you are very much in Adrenal function territory which would need the input of the Endocrinology Dept of the hospital as a matter of urgency as this could be life threatening. I must say your GP lack of service is pretty woeful. Where in the Country are you?

You are never going to get fully well with a tiring, depressing job. Is this non- negotiable at the moment?

[NickWarwick in reply to SheffieldJane]

I live in Warwick.

Job is non negotiable. I run my own business. 59 years old and with lots of bills, mortgages, staff to pay. No chance of getting off the treadmill for another 8-10 years.

I dont sense this is life threatening. Some days are better than others. Excess screen time and long drives completely stuff me, but as i say one week on the Norfolk Broads recently just pottering about and i felt absolutely fine.

I am still thinking a lack of adrenaline in a stress / tiring situation is the problem.

I have just filled in an on-line request for a GP consult (the only option it now seems) and they are ringing me back on Friday.....so thats nice !

[PMRpro Ambassador in reply to NickWarwick]

"I am still thinking a lack of adrenaline in a stress / tiring situation is the problem.!"

Sorry - but that COULD be life-threatening if too much appeared together and why I felt a higher dose of pred was worth trying. It would also provide some information for the GP.

And no - applying on Tuesday for an urgent appointment which will be acknowledged 3 days later is NOT nice. It is negligent.

[DorsetLady PMRGCAuk volunteer in reply to NickWarwick]

Still not good enough, but I guess it’s a start…. But as PMRpro has said adrenal insufficiency could be life threatening….. so maybe try extra Pred as she suggested.

[NickWarwick in reply to DorsetLady]

Understood. Thanks all

Best wishes

Nick

[DorsetLady PMRGCAuk volunteer in reply to NickWarwick]

Please keep us informed….

[NickWarwick in reply to DorsetLady]

GP rang today helpfully. Just had a meet and he wants the dosage to go up to 5 mg for the next few weeks until I see the rheumatologist. Onward.

[PMRpro Ambassador in reply to NickWarwick]

Hope it helps!

[DorsetLady PMRGCAuk volunteer in reply to NickWarwick]

Ditto to PMRpro’s comments -fingers crossed

[Gimme in reply to NickWarwick]

I'm glad that you got to speak to someone, as I was going to say 111 and stress your history of PMR, as has already been suggested. If it gets any worse or does not go away with the increase in dose, I would certainly still call 111.

[PMRpro Ambassador in reply to NickWarwick]

You don't have a smartwatch do you by any chance? Just to check it isn't bradycardia episodes that are doing the deed.

[NickWarwick in reply to PMRpro]

GP checked my pulse which is fine thanks.

[PMRpro Ambassador in reply to NickWarwick]

That is a one-off image. checking your pulse is only any use if the problem is actually happening at the time and it rarely is during a consultation. 99% of the time I am fine - only during episodes is there something to be found.

I had repeatedly complained of waves of dizziness and on one occasion had been on a 24 BP Holter monitor when one happened just as a BP reading was taken. It was obvious that my BP had plunged at the time. No-one reacted though. Then I had one, collapsed, hit my head and the emergency services took me to the ED as I am on blood thinners and I had also developed a TGA (transient global amnesia), I was confused and had a high heart rate so the standard protocol was i.v. diazepam. Unfortunately, I react badly to it, I develop atrial fibrillation, but at the time it wasn't on my notes and my husband was still on his way to the hospital. So I was on an ECG monitor for some hours - and I was developing bradycardia episodes with pauses in heart beats of up to 7 seconds, that is a pulse of under 10! They didn't last long but they were long enough for me to feel very dizzy if standing and even collapse.

I was immediately sent for a pacemaker to be inserted and afterwards I did say to the cardiologist here that I HAD told them something was wrong. And her excuse was just that - we never saw it. But a friend is now quadriplegic having had a dizzy spell while standing at the top of the stairs - he fell and broke his neck. I'm not wanting to be "doom and gloom" but this is potentially something rather dangerous. Persist.

[NickWarwick in reply to PMRpro]

understood. thanks

[Orange_2022 in reply to NickWarwick]

In the past when all else failed I've written a letter to my GP and delivered it to the surgery! It did work....

Don't stress too much....I've recently (and occasionally in the past) had strange dizzy, lightheaded feelings where I felt I could fall over. It has gone away now. Possibly labyrinthis - although I know it's often worse and lasts longer as in your case maybe. Hope things get sorted for you soon.

[tangocharlie]

Sounds to me like you might need a neurologist, and you definitiely need to see GP somehow, urgently so if yiou can't see one go to A&E

[Greenthought]

Always best to eliminate any physical causes of symptoms first, and see whether adjusting meds works. But in relation to the stressful working life, as a former therapist I would add that it could be helpful to see if you can carve out 20 minutes here and there during each day to completely relax, and I don't mean flop in front of the TV, but resting back in a comfortable chair or on a bed, close your eyes if you can, and breathe OUT a lot - gentle breaths in, not too deep.

If your mind keeps worrying, think of the worries as clouds that pass overhead and dissolve as they go. Or write them down beforehand and promise yourself you'll deal with them later, after you've taken care of yourself. It can help to scan your body from toe to top, tensing each group of muscles and then letting them go. Relaxation turns off the fight-or-flight stress response and turns on the rest-and-digest response. It's also anti-inflammatory. It's not a waste of time - it creates more time, oddly.

[Fries]

Hi Nick, so sorry you're feeling so unwell. I have been recently diagnosed with PMR and possibly GCA (they haven't ruled it out). Some days I feel as though I have brain fog. Other days I seem to be very alert and can plan a lot of things. It seems to vary. I had pain in the back of my ear recently and have now been referred for an urgent ENT referral. The pain subsided (I think it's because I am on steroids - apparently if I had gone to ENT they would have given me a steroid injection). I am left with continuous tinnitus which is driving me crazy.

When I was at the Hospital they advised me to have a look at the versus arthritis website on Neck Pain. This may help you?

Meanwhile, I would take the advice to see someone as soon as possible. Good luck.

[PMRpro Ambassador in reply to Fries]

The ear pain could well be due to GCA - involvement of the 8th cranial nerve and pred would help.

healthunlocked.com/pmrgcauk....

pubmed.ncbi.nlm.nih.gov/314...

[oscarina]

A friend with a higher stress job, air traffic controller, was having some of your symptoms and concomitant exhaustive cognitive load, found he benefitted from small dosage of paroxetine, found it could not be mixed with phenergan d/t palpitations. Had more energy and clarity of thought, and the vision SE were compensated for with larger screen. Felt measurably better in three weeks, but your SX currently indicate more rapidity in getting fully evaluated. And yes the tinnitus is not easily coped with in first year, and can be vascular in origin of pulsatile unilateral tinnitus. forge ahead