Update - myositis, migraines and private/NHS cooperation

[whisperit]

Hello again. First many apologies for my long absence again. It's due to my developing an acute propensity to migraines. They are triggered by any exposure to screens - TV, laptop, smartphone. So I am having to avoid social media as much as poss. Otherwise:

1. Last year, I was unexpectedly put onto the caseload of a rheumy registrar. So my first 'review' of 2019 was consumed by my having to repeat my history to him, rather than addressing my needs at the time. When I was directed to him 6 months later, I asked to see the consultant instead, and he happily agreed. I recommend doing this if you find yourself in the same situation

2. The recommendations made in my private consultation with Dr Patrick Gordon last Spring were passed on to my NHS consultant, and he approved them all. So I've had a thigh MRI and EMG - which showed no ongoing myositis activity - and a high res chest CT - also clear of active ILD. However, the CT also showed more extensive bronchiectasis than I had previously been led to believe. This makes quite a difference in terms of my expectations for recuperation and physiotherapy. Both for confidence reasons, and for this insight, the whole palaver around getting Dr G's opinion was well justified.

3. My insomnia seems to have resolved. I had multiple inputs on this (including a sleep lab study and insomnia CBT). Since I am doing nothing different as a result, I have only one idea that might explain the improvement, which is that I am now on a more stable steroid dose than ever before. It maybe that the insomnia was a response to coping with ever-changing steroid doses

4 The migraines are a puzzle. The rheumy registrar declined to discuss them, saying that he knew so little about them that he wasn't even able to refer me to a neurologist, and I should discuss it with my GP instead. Luckily, once I saw my consultant, he immediately did a referral for an MRI, which I'm now awaiting. In the meantime, sumatriptan is proving a very effective treatment for the symptoms.

Hope there is something of use for some of you. Please forgive me if I dont respond to any comments!

[baba]

Good to know you are ok. Totally understand you avoiding screen time. Best wishes.

[whisperit in reply to baba]

thank you baba x

[Lupiknits]

I kept thinking of you and wondering how you were. Thanks for letting us know 💕

[whisperit in reply to Lupiknits]

thanks Lupi x

[Horsewhisper]

Good to have you back - have missed your insightful posts and general wisdom! Please don’t spend too long reading this! Xx

[whisperit in reply to Horsewhisper]

That's very kind. I have missed you and yours! This forum really has made such a difference to me. Hope that I'll be able to return properly soon x

[misty14]

Great update Whisperit, so sorry you've been having such a tough time but glad your getting tests from a new Rheumy!.

I too can vouch for asking to see the Consuktant in clinic rather than the registrar!. It's made such a difference to me so I hope we can inspire others.

Good luck for the MRI and those migraines. Another possibility is a pain clinic as they will do injections for them!. See how you get on.

Glad your insomnia has resolved. Maybe it was just one of those things although I do agree about the stable steroid dose may be better on our bodies!.

Let us know how the MRI goes and take care. Do hope 2020 is a better health year for you. Xx

[whisperit in reply to misty14]

thanks misty. Your support has been so helpful to me x

[cuttysark]

Really appreciate you giving us an update on how things are. Have been thinking about you and hoping you had some improvement over the past while.

Miserable about the migraines but glad they are at last to do an MRI.

At least the stable steroid dose is helping with the sleeping.

I remember we had similar adrenal problems and had to take Pred and Hydrocortisone both together. I am still in that situation but when they are both under control with dosage I feel a bit better and sleep.

Will be posting an update soon myself, a lot has happened recently and am weathering after effects of the flu bug too at the moment.

Please let us know how you get on ,if you are able.xx

[whisperit in reply to cuttysark]

thanks cutty. I'd love to hear more about how your dual dosing is working (or not?) hope you are really well anyway x

[whisperit]

thanks Lou. Those are all useful things that will be useful for me to really examine. x

[EOLHPC]

😍👍🤞✌️🦓🤩💐💐💐💐👏👏👏👏🌈🕊💫

🤩 YAAAAAY + THANKS for this MASTERCLASS: Am relating to a lot you’ve described...ALL these details are INVALUABLE

Just read this piece from The Mighty about our ‘silent’ passages...seems to me your WONDERFUL post fits in with it...am V MUCH relating to your words (re my years of segueing into relative silence here after many years active involvement):

Just a tiny excerpt: “...I barely have time for the amazing people in my life; I certainly don’t have time for people with standards I can never live up to or high maintenance relationships that require a lot of obligatory work. ...”

scarymommy.com/friends-who-...

Sending you LOTS OF LOVE 🍀🍀🍀🍀 Coco

[Lily77]

So good if you to let us know how you have been along with v interesting info. I found that hypnosis tapes plus meds cured my migraines set off by screens and lights. Wishing you the v v best, Lily

[whisperit in reply to Lily77]

thank you Lily. x

[Hidden]

I never replied to this rare post from you Mike because I really can’t bear the idea of contributing to your pain. I had only 3 months of what were thought to be migraine last year but that was quite enough for me to empathise strongly.

Some thoughts in case MRI hasn’t offered any clarity. But don’t reply please - just cogitate or dismiss. My first neurologist was a migraine expert and told me that migraine almost never develop later in life - they most often start when young. Did you have them as a younger man I wonder? My third neurologist phoned me twice about mine last year - mainly because she was concerned they might be cranial fluid leaks.

But my rheumatologist was quite sure they were cervicogenic ie muscle spasms caused by confirmed significantly degenerated/ herniated discs C6 and 7. I had no neck pain at all - just migraine like headaches unless I was horizontal in a darkened room.

Then they both decided that this was referred pain from neck so I was sent for physio - who felt that it was the way I was lying in bed propped up with pillows for gastritis. He gave me exercises and prop advice including neck brace resting cushion for when I’m sitting. Since raising the bed with bricks I’ve slept with just one cushion under my head, used neck brace for long drives or extended sitting and the headaches and nausea have gone away.

Anyway must go as need to shut eyes having had another molar extracted earlier today. No replies please. 🤗