Leo

Am nearly 3 years on and I still suffer from fatigue. I am still learning how to pace myself which has led to frustrating self-imposed restrictions on my social life. For example, I limit my activities on Sunday's so that I can actually make it into work on Monday's. But some days are better than others. Sometimes I can recover with just a nap or taking it easy, but at other times when I have really been over doing it, it's like I have hit a brick wall and I can barely function my head is so foggy. I think my overall 'improvement' stalled about 12 months ago. Pacing oneself is easier said than done sometimes ...

Laura, am sending you a big hug. Hope the headache is a distant memory by now. Am appalled by your GP. Where does he get his (mis)information from? I think you did really well under the circumstances to direct him to BTG. It's hard to think properly & explain stuff when the serious headaches strike. Don't beat yourself up, you did good! Leo xx

Hi Janet, Maybe we should start a thread a about pressure/pain post craniotomy? Have had that too. It's not exactly pain, just feels like someone has a big boot constantly on the side of my head & above my eye. But its better than the headaches. Hope you all have a good day, Leo xx

Hi Laura, I know how it feels, I know. Somehow we just have to keep going back to the doctors until something helps long term. Not sure what, but something has to help in the end. Am waiting to find out if I can get a nerve block on my craniotomy side. Maybe some relief of the pressure will make all the difference. Maybe ... Intetesting thoughts, Bagpuss, Thank you!

Hi Karen, Interesting. I think the general idea is to try me on medication like Propranolol or Topiramate to ward off headaches but ... will do nothing for the constant pressure felt above my eye (just below the craniotomy site). So far it would seem that migraines - with or without aura - are a consistent theme here. Leonie

Thanks everyone. One week and counting ... xx

Hi Janet, That is exactly why I am giving it a go. I have seen so many doctors about the headaches and pain/pressure since my clipping & only one suggested it was nerve damage. But guess what? He left the hospital before embarking on a course of treatment! Now my new doctors are convinced the pain is all migraine related but I never had migraines before the SAH & nobody in my family suffers from them. But am so tired from the pain & so fed up of taking painkillers & feeling half alive on a good day that I am willing to try just about anything! Will PM you with the results in a few weeks. Take care, Leonie x

Hi, I had the injection yesterday. The actual injection itself was surprisingly painless. But the doctor refused to give me one on both sides as she had never had to treat someone who'd had a craniotomy and was afraid it would cause me more problems. She went off to speak to a consultant but came back none-the-wiser and said she wouldn't be happy to try and block the nerves on both sides. Thus, my head doesn't hurt on the left hand side but it does on the right! Hopefully it will last for a few weeks (or more) at least as I have pain relief on one side. Off to lay down now. Have a good afternoon all, Leo xx PS: I feel like I have been kicked in the back of the neck though. Am really sore where the doc poked me to find the most tender spot to inject

You would be the first man to know how to do that! (Couldn't help myself)

Thnks for all of your replies and positive comments. Nita - at last someone who has had it. Great to hear it lasted 3 months for you. Perhaps my doctor was trying not to get my hopes us! Anyway, fingers crossed.

Thanks Maggie, will keep you all updated. Apparently it helps 2 out of 3 people who suffer from severe headaches (as I now do) but ... and here's the rub... if it does work will only be for 1-2 weeks!!!!!

Thanks for the reply Kel. The aura sounds horrible but at least your GP seems to be taking it seriously. I know how hard it is going back to work. I think you have done really well in such a short space of time! I posted the question because the subject of headaches/migraines pops up every now and then on the forum & I just wondered how many of us have been told that we suddenly have migraines without it being a consequence of the SAH? Just mulling things over & thought I would share .... Leonie x

Hi Karen, Thank you. It involves an injection into nerves at base of skull area in the hope of blocking pain... We'll see! L x

Anyone ever had one of these to relieve their headaches? Sounds scary but am due to have one this week! In fear, Leo x

Hi, As some (or many) of you may know, I have had severe headaches since my SAH. The latest thought at the hospital is that I may have developed migraines as a coincidence, not because of the SAH. Has anyone else been diagnosed with migraines post SAH? Enjoy the lovely evening! Leonie x

Congratulations!!!!!!!

Hi Angela, I had to have an angiogram last year as the regular CT scan with contrast dye didn't actually pick up on an un-ruptured anni. I was terrified. But the women who conducted it at my local hospital were warm and funny and friendly and made it as pleasant an experience as it possibly could be. Although it doesn't hurt, it is hard to explain the anxiety that comes from knowing something is creeping up inside you and the weird sensations of the dye that do not hurt but feel so unnatural that you want to jump up. I can understand why you are in no hurry to want want a repeat of this procedure but as Karen rightly says, it is very expensive and the hospital would not put you through it unless they deemed it absolutely necessary. You just need to find out exactly why they need to do this procedure. If you are still worried about further bleeds, it may be possible to stay in hospital overnight (for peace of mind) but this probably will not be offered, you will have to ask for it. Take care, Leo xxx PS: Sorry if that is too descriptive!

Thanks Blueday, I know how awful it is trying to get across from one end of South London to the other. Hope you are having a good day!

Thank you, Tina! I managed to make it home with a spring in my step - all thanks to meeting you. Was so nice to finally be face-to-face with someone who has had similar experiences. I think you are a beautiful and brave lady! Leonie x

Oh great. Would be lovely to meet you!

Thank you. Am looking forward to it!

Hi, A new group of 'Different Strokes' (group for younger stroke survivors) is having their first meeting tomorrow at 1.30pm at the Wimbledon YMCA. Sorry for the late notice. I've never been to a meeting but I hear they can be a great place for support, advice and new friends. The address is YMCA, 200 The Broadway, Wimbledon, London SW19 1RY. Leo

Hi Anne, The advice here seems spot on. I'd go and see my GP for blood tests. I was told by my occupational health team that fatigue would be an ongoing problem for the rest of my life and so far they have been right. Some weeks, I am Ok but other times am fit for nothing. But to be on the safe side, to make sure there isn't another underlying problem, go and see your GP. Hope it is 'just' fatigue, Leo

Hi All, I tried those recommended by the Stroke Association last year and like Penny also had no joy. They said their underwriters would not cover my unruptured anni - the whole purpose of trying for travel insurance. Was a very frustrating business. Thanks for the tip about Columbus! Leo

I have no idea but you pose an interesting question. At a guess, it might have something to do with the degree of word disturbance why some of us are diagnosed with aphasia and some are not? But I am grasping at straws!