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4 years on


SarahLS
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It seems crazy to think that I am now 4 years out from my SAH, and this year's anniversary coincided with my annual (telephone) consultation with my neurologist.

 

This autumn has been hard on my head for some reason, and the freedom to set my hours and work from home is all that has kept me from disciplinary meetings at work due to amount of time off sick.

 

My head had been hurting a lot more, I've had a lot more headaches that were nearly as painful as the original ones (I only haven't totally panicked as they've built to this pain level rather than being thunderclaps). My husband has also said my memory & word finding have got worse and we've both noticed that the fatigue is back to a crazy level. All in all I've felt about as bad as in the few months after it all happened.

 

The neurologist (unlike the practice nurse who reviews me annually) did listen and didn't try to blame it on age/hormones/peri menopause but thinks that I've been left with borderline chronic migraines and so while I do have to keep a journal to map headaches against my cycle I will be changing the medication I've been on for years.

 

Before the SAH I had migraine with aura and they've been controlled with a beta blocker for well over a decade, and amitriptyline was added in 4 years ago. I can't take triptans for migraine as I've had an allergic reaction from them in the past, and they are also vasoconstrictors - the SAH is likely to have been caused by a reaction to the vasoconstrictor in dental anaesthesia.

 

So I now have to wean off the beta blocker and see if I tolerate candesartan. Not a drug I'd heard of, and one from reading the packet has some interesting potential side effects. I shan't be trying to do this swap before Christmas- what with losing one Xmas to the SAH & then last year to Covid restrictions I want to enjoy this one!

 

If this drug doesn't work then the next step is topirimate but as that can have effects on cognitive function and I'm suffering in this way already the Dr isn't too keen to go down this path yet.

 

I know we can't ask for any medical advice but I would be grateful if anyone else has tried/still uses either candesartan or topirimate and is willing to share experiences.

 

I am of course very pleased that a new bleed isn't being considered but nervous about the new medication & the increase in headaches etc.

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Hey Sarah. Well done on the four year mark and it’s not that unusual to see a bit of a plateau at that point but also you have become more used to this version of yourself and even if you don’t recognise you are probably doing continuously more and taking less breaks .

 

Try and use the time over Christmas season to recalibrate a bit, bring in a few more pauses, check your water intake and take a look at the sensory load you are subjected yourself to, see what you can change,

 

I got diagnosed with optical migraines linked to my cycle at 5yrs out I think, basically neurologist explained my damaged brain processed my migraines different to how it had before. I had a change of BP tablets to candersarten so pm me if you like but this helped and I have been good since. 
 

Remember patience with self if you can. I still forget and get landed on my bottom! 

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Hi Sarah :) 

 

Congratulations on your 4 year SAH Anniversary xx

 

Sorry to hear you are feeling worse. Wise words from Daff above. It is so true that we do tend to do more and more and sometimes your body lets you know and make you take notice. I really hope the new meds help you when you change after Christmas. I have not heard of these drugs but good to know Daff has done well on Candersarten and you can PM her.

 

Wishing you a wonderful restful good Christmas Sarah xx

 

Take care

Love Tina xx 

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Hi Sarah

 

Very wise word from Daff and totally agree with her.  During the first lockdown I worked from home 2 1/2 days per week and I found my heads were worse and I felt far more tired.  The problem??  Was working longer and without breaks at home as there was no structure from being in the office.

 

Once I went back to working 5 days from school, I had more energy and the headaches disappeared;  basically because I was back in a routine and had the set hours of working in the office - even with the stressful commute of 5 miles which daily takes half an hour to complete!!  Have you been working more at home than you would in the office - even though you've been setting your own hours??

 

Can't advise on the drugs as I'm not on anything at all.

 

Definitely use the Christmas holidays to concentrate on you; rest, relax and have a fabulous time this year xx

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Many thanks as ever for the warm response & sensible advice. Lots to think about over the next few days but as always lots of reassurance.

 

Working from home has in many ways been better for me as I can control the lighting & heating in my work area, something that wasn't possible in a shared office. I'm also working shorter days, although more of them, and as the husband is home I'm also taking proper tea breaks and lunches - I'd generally have stayed at my desk in before times so I could compress my hours!

 

Today I am exhausted as we've had to drive from Norfolk to Hungerford & then socialise all day at a family thing. Hopefully our main Christmas will be calmer!

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