SarahLS Posted December 7, 2021 Share Posted December 7, 2021 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. Quote Link to comment Share on other sites More sharing options...
Daffodil Posted December 7, 2021 Share Posted December 7, 2021 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! 2 Quote Link to comment Share on other sites More sharing options...
Tina Posted December 8, 2021 Share Posted December 8, 2021 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 1 Quote Link to comment Share on other sites More sharing options...
Skippy Posted December 8, 2021 Share Posted December 8, 2021 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 2 Quote Link to comment Share on other sites More sharing options...
SarahLS Posted December 8, 2021 Author Share Posted December 8, 2021 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! 1 Quote Link to comment Share on other sites More sharing options...
SarahLS Posted February 3, 2022 Author Share Posted February 3, 2022 Just an update on how things have gone with the attempt to change meds...in a word terrible! It would appear that I am at the very least 'sensitive' to Candesartan as every time I take a dose I end up with a crippling migraine. My GP has been amazing and we've tried a variety of strategies to wean off propranolol and on to Candesartan. But when I had a headache that was nearly as bad as the original thunderclap along with horrifically high BP and a resting heart rate of 135bpm the decision was made to immediately stop the Candesartan and to restart the propranolol whilst trying to see my neurologist again. A day after stopping the candesartan the horrific headache had gone, back to the background 'usual' pain and two days later my blood pressure is stable and my heart rate down. That was a terrifying month. Not sure what will happen now, I actually have a face to face appointment with my neurologist at the end of March and reassurance that if I feel at all unwell I'll get to see or speak to a GP straight away. Onward & upward...and as ever thanks for listening! Quote Link to comment Share on other sites More sharing options...
Tina Posted February 4, 2022 Share Posted February 4, 2022 Bless you Sarah, what a horrible terrifying month you have had ! Good news you now have a face to face appointment with your neurologist in March. Great to hear your GP has been amazing and you have the reassurance they are there for you if you feel unwell straight away. Really hope everything gets sorted and you start to feel better. Take care Sarah and let us know how you are doing. Love Tina xx Quote Link to comment Share on other sites More sharing options...
SarahLS Posted March 25, 2022 Author Share Posted March 25, 2022 I'm feeling a little despondent this evening as my neurologist appointment was cancelled with just 3 hours notice - he has Covid. The appointment has been rescheduled for mid-May which I know isn't too far away but as I've already been waiting 8 weeks to see him this feels an eternity away. I'm trying to put a positive spin on it - I've just had Covid myself and it was pretty horrible, plus the fatigue and brain fog I'm still experiencing are quite severe - by May hopefully I will be back to "just" whatever's going on with my brain but tonight every thing just feels too hard & I needed to vent with people who will understand. 2 Quote Link to comment Share on other sites More sharing options...
jess Posted March 26, 2022 Share Posted March 26, 2022 Sarah sorry you are having to wait so long for your appointment hope results are good xxx Quote Link to comment Share on other sites More sharing options...
Tina Posted March 26, 2022 Share Posted March 26, 2022 Sarah that's so frustrating for you. Hope you are beginning to feel better from the nasty Covid. Good luck for apppintment in May. Take care Love Tina xx Quote Link to comment Share on other sites More sharing options...
SarahLS Posted May 17, 2022 Author Share Posted May 17, 2022 As everyone was so nice earlier in the year when I was really struggling I thought I'd update a bit as I saw my neurologist yesterday. A face to face appointment (even with masks) was so much better and easier than the ones I've had to have over the phone and I felt I had much more of his attention and we could work through everything that happened as I tried the new meds, and how my head is now. My sky rocketing heart rate & BP when I tried the drug swap in Jan is a cause for concern as it is likely the original SAH was caused by vasoconstriction & a BP spike. He thinks that the SAH has left me with chronic migraine which do need managing, especially as I'm limited in what pain killers I can take and how often. Rather than trying another new drug we're going to tweak what I'm currently taking to see if we can reduce both the frequency of bad headaches and hopefully get rid of the constant tight band feeling that I've had since 2017. He's also recommended trying vitamin B2 supplements as there's been some encouraging research into taking this as a headache prophylactic. I think the best thing about the appointment was that he outlined next steps if this doesn't work, so that I don't get despondent or try to cope on treatment that isn't working. After the phone appointment in November I did think I was at the end of options and when it all went so wrong and then not even returning to how I was in November I was pretty depressed but I do feel both supported and hopeful again now. As ever thank you all for the kind words & support. 5 Quote Link to comment Share on other sites More sharing options...
Tina Posted May 18, 2022 Share Posted May 18, 2022 Sarah that's great news thank you for updating us, i do hope tweaking the drugs helps you. So good to know you now feel supported and hopeful again. Take care and keep in touch. Love Tina xx 1 Quote Link to comment Share on other sites More sharing options...
Louise Posted May 18, 2022 Share Posted May 18, 2022 That is great news glad things are going better for you.. take care, stay-safe. 1 Quote Link to comment Share on other sites More sharing options...
Kathy Posted June 14, 2022 Share Posted June 14, 2022 Sarah, Hoping things are improving and medication management helping. 💗 Take care. Kathleen (in Colorado) 1 Quote Link to comment Share on other sites More sharing options...
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