Dead Slow and headaches (mainly)

[IdasMum]

First of all....this little one arrived 2 weeks ago today and I am impatiently waiting another 3 weeks to visit her in the UK. Her name is Thea.

So, tomorrow I begin the dead slow method taking me down to 11mg and onward. I am not looking forward to tapering as I haven't been brilliant on 12mg. I have a blood test due next Weds and will see Doc on the Friday to discuss results with him and how to manage my trip to UK.

I tripped and fell in the garden 2 weeks ago, hurting my already dodgy left foot. Nothing broken, slightly swollen for a couple of days, seemed to improve and then I have ended up limping on it and in pain. Yesterday evening particularly painful. Seems a little improved today....will see. On the basis that my walking is bad again and after reading a post from PMRpro somewhere on here, I decided to bite the bullet and book Special Assistance at Stansted as I know I would really struggle to walk the distance to boarding, along with luggage and most likely under pressure. Feels so odd book this for me and that my almost 70 husband will be walking

Last Thursday I had a humdinger of a migraine and realised my bad headaches in the past have not been true migraines. This one hurt so much I cried, would not relent and I threw quite a lot of pain meds at it. It lasted from around 5am to 2pm. I spent much of that time in bed just waiting for it to relent. I even took a very old Sumatriptin (10+ old) which gave me all the side effects but didn't remove the pain!) I woke up this morning with a headache and started to worry it would be another migraine, came down, took steroids, had a cuppa and then took Paracetamol and Ibuprofen in tandem which have always worked for my headaches. I became allergic to Ibp a year or so ago, but I don't care. I can put up with the allergy symptoms far easier than the headaches. I went back to bed for another hour or so and my headache is still around in the background but thankfully not a migraine.

I am beginning to worry that I won't know the difference between a migraine and onset of GCA! How will I know if and when to get a medical input?

Finally, chatting this morning with OH I discovered that he sees my illness as a chronic and forever illness! Me, I am hoping for it to go away but very frustrated that I have at least another year to go (if I am very lucky I know). It's odd, but somehow discovering how he feels about it feels reassuring.

[PMRpro Ambassador]

If you are not feeling good at 12 - don't start the journey to 11mg before you travel to the UK. That really would be asking for trouble. It is possible the not feeling good at 12 has a little something to do with your fall. Don't underestimate the effect of even a minor trip!

Don't know what Stansted does - but if they use an electric buggy-type transport - he will probably get a lift too. If it is wheelchair, I'm afraid he won't! But you can carry everything

If you are prone to migraines, get yourself some up-to-date sumitriptan. If it is migraine it will work. If it is GCA it won't. Pred works for both.

If it is a true allergy - be careful. One day it will be more than just an itch or whatever you react with.

And what a sensible husband you have! If you accept PMR/GCA as a long term pest that can be kept on a leash, if it goes away you will have a bonus pleasure. He that expecteth nothing shall not be disappointed - and that is always lurking there when you plan when you will be off pred. Accept it, work round it - and enjoy the release it gives you. PMR doesn't handicap me significantly more than my atrial fibrillation does. Neither are going to go away anytime soon.

[IdasMum in reply to PMRpro]

Thanks. Always the voice of reason. Will hold off the DST for now.

I haven't taken Sumatriptin for years and don't want to take them. Was desperate.

Ibp can cause some swelling...but I don't take it now unless pushed.

Hoping for an electric buggy and yes I can carry the bags

[PMRpro Ambassador in reply to IdasMum]

And forgot to say - what a sweety! There have been a load of grandbabies amongst my friends and I'm feeling rather wistful - I feel ready to be a grandma now, I didn't 17 years ago!

[DorsetLady PMRGCAuk volunteer]

Hi,

Totally agree with PMRpro, you need to consider this as a long term illness. That way you can put it in a box with any other long term illness you may have - who hasn't got something once you get beyond 60.

If you keep thinking Im going to be rid of this in 3 months, 6 months, a year then you are just putting pressure on yourself - and that's the last thing you need!

Many people with a chronic illness, accept it, maybe don't like it (I don't like my arthritic knee), but know that they can go on living, and more importantly enjoying life, adjusting what they need to!

Your husband is very sensible, and the new member of the family is lovely. Enjoy your visit - and leave the dose as it is until you're home again.

Good to hear you've booked assistance, makes life so much easier!

[IdasMum]

Thank you.

[TooSore]

What a sweet little angel! She's precious. Enjoy every moment.

[Hidden]

Hi

What a gorgeous baby girl, I'm sure you must be so excited 💕

If you're not feeling so great, as the others say, don't even consider reducing at this time. The stress of flying alone would make me think twice but glad to hear you have assistance at the airport, believe me l used it for several years but I'm much more mobile these days, thank goodness. You need to discuss the headaches with your GP & get new Meds & as PMRpro says don't take anything you think you've had a reaction or allergy to as next time it might be much worse, I do hope you can sort the headaches out soon.

Best Wishes & enjoy your trip

Mrs N x

[Elaine-W]

Hello Thea and welcome to the world.

I have GCA and also suffer with migraines. They are much improved with HRT though. I was concerned whether I would know the difference between both pains. At the moment I am experiencing a flare and the differences for me are clear. I have migraine without aura but I feel a weakness in my arms and I have uncontrolled yawning. Thirsty too and my body seems to want to shut down. I feel nauseous. With GCA the pain for me is temporal on both sides. Worse on the left. like a drill slowly being forced through the middle. I also have pain on the top of my head, right side. The difference is distinct now.

I wish you well and enjoy that gorgeous baby xx

[IdasMum in reply to Elaine-W]

Thank you.

[karools16]

Hello IdasMum. What a beautiful little granddaughter. Am sure you are counting the days to see and hold her.

About the difference between migraine and GCA headaches; Believe me, you WILL know when it's a GCA one. I had migraines, for awhile, pre-GCA, but when GCA struck, without warning, 1 night, when asleeep, I thought I was being murdered! mY HEAD WAS SPLITTING! aM NOW ON 3 MG pRED, TAPERing to 2 mg, and never had any more headaches, like that first 1.

Hope for your sake it's'rather' migraine. Enjoy your trip, and be well.

[IdasMum]

Ouch and thank you.

[Hirwaen]

Forget all your health problems for an hour or so and revel in the wonderful feeling of being a Grandma!!!! There is nothing like it, get over to UK asap and cuddle that baby.xxxxx