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Newly diagnosed NASAH - help!


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Hi anyone

I'm 46 year old woman who had an NASAH on 6th February. I spent a week in hospital, half of that at a specialist hospital in London having the required tests. The only thing that highlighted the NASAH was the lumbar puncture. I was released on no medication and with no further treatment required. The rather dismissive consultant just said that I am to 'get up, get out, get moving' and drive when I am ready. Meanwhile a nurse told me that she wouldn't be surprised if I didn't end up back in hospital some time in the future. She was much more pessimistic. I'm fit, healthy, walk and run with my dogs, a good weight, don't smoke and have no health problems. All I had was a very bad sudden headache starting at the back of my head one night, no dizziness, blurred vision etc. I don't really have many problems no other than I feel very tired after just walking the dogs and my head feels rather 'light' and 'fuzzy'. Just don't feel altogether with it. I've been resting a lot but at some point I'm going to have to start managing my house and school runs, shopping, cooking etc. I'm expecting a new puppy in a month's time. I know I seem to be one of the lucky ones and my worries might be a bit mild compared to some people but I would really like some more information about prognosis and whether this light headedness is going to be with me for a long while. It's very frustrating and I don't feel I've had the right advice from the doctors so far who seemed to make out that I should just get back to normal life.

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Welcome to BTG.

All I can say that everybody's recovery is different, the tiredness does get better with time but may not go completely. As for the light headedness, only time will tell.

Make sure that you drink plenty of water as this helps.

The info you were given about driving is wrong, the condition is notifiable to DVLA and if you don't it will invalidate your insurance.

As to the prognosis, only the medics can tell you that, so see your GP or hope that you see another doctor at your follow up appointment.

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Thank you for that, especially about notifying DVLA. I'm going to try and see the GP next week but as you say, it's all a bit individual as to how recovery progresses. It's been interesting reading around this site and I think it's encouraging to hear that the risk of a re-bleed is very low. I guess I'm still a bit in the fearful zone, not knowing if life will ever quite be the same again. I've had 2 children with cancer and liver transplant so life-long conditions aren't new to me, but I'm normally the carer not the one being cared for! Best wishes

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Hi

I had a NASAH in june last year and was told to tell DVLA. Unlike yourself i did feel very weak and strange at first. The DVLA wrote back and told me not to drive till they had contacted the hospital and felt i was okay to drive. That took 3 months which i didnt mind as i felt very tired then anyway. I still have the lightheadedness even now 8 months on. I found i had ups and downs about 4 months on i went down quite bad then felt good again then down again. Im just starting to feel a bit better.

I was left like you. left hospital with no answers just told to get on with it. Some of the strange feelings ive experienced are very frightening. I have found most comfort and advice from this site. Hope it helps you too.

Traci S xxx

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Thanks Traci. That's helpful. They say lightening doesn't strike twice eh?! Still, I'm thankful that despite the tiredness I seem to be doing ok. A well meaning friend told me to 'take it as a warning' which I find a bit odd, as I don't intend to change anything I was doing before if I don't have to. Obviously if I'm tired I won't be able to do certain things until I'm better but nobody's said I have to make any lifestyle changes, so my aim is to keep going as much as I can. I don't think it was related to stress or blood pressure in my case, just one of those unfortunate things. Take care

Sue

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Hi Sue! Welcome to the BTG family!

My goodness, your introduction could have been copied from me!! 46, otherwise healthy, in charge, sent home and told to carry on. I'm just over three months now. I wonder if your friend meant 'take an opportunity to slow down' and instead said 'take it as a warning'? I expected to jump back into my old shoes. When I did that they didn't fit right, at least not yet. I jumped back into 'normal' too soon. Im now on a break to rest my brain and allow it to recover. It's true that our chances of rebleed are nil and our recovery is expected to be good but that doesn't mean it will be quick. I thought it meant quick! Listen to your body. It will tell you what you need.

Nice to have you here Sue!

Sandi K.

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Hi Sue and a warm welcome to BTG:smile5:

I too was 46 at the time of my bleed and likewise was told to carry on as before (apart from move furniture, which wasn't in my daily routine anyway), which in reality is not quite that simple. It takes time to recover and get back to normal, something that they often omit to tell us. It is very recently that this happened to you and I believe the best way to make the best possible recovery, is to rest as much as possible and drink plenty of water. It is surprising how much the combination of these two things do help in getting us back to normal. I didn't get much chance to do the resting bit in the first year, but I do rest more now if my head begins to feel a bit odd and by rest I mean day time sleep! I believe if you do the resting now, you will gain the benefits later - I think I went about it the wrong way round:roll:

Wishing you well,

Sarah

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Thanks Sandi - it's good to hear from people who have been through the same thing. :-D

The doctors at St Georges, Tooting were very dismissive once they knew there wasn't an aneurysm. Almost as if I was a bother to them. Very different from the paediatric consultants we're used to dealing with who bend over backwards to explain things and talk to you as if you're human.

They said they'd see me in 6 weeks, just to see if I've got any questions. People do keep telling me to rest and not rush back to normal too quickly. Interesting that you feel it set you back. I'll take your advice I think, even though it's going to be very frustrating just twiddling my thumbs - good chance to finally teach my boys how the washing machine works though I guess.

Thank you and hope you continue to recover well.

Sue

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Thanks Sarah, the odd thing is that I have always had a daytime snooze (power nap) after lunch (much to my friends' amusement), so now I can carry on unashamed! I'll have to drink more water too, I'm a bit of a tea-aholic but I think that dehydrates you, so can't be considered the same thing. What are your thoughts on drinking alcohol? I've always tended to have a glass at night but I've read on here that 3 months without alcohol may be advisable.

Nice to feel I'm not alone. Thanks everyone.

Sue

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Hi Sue,

I can't quite remember when I had my first alcoholic drink after sah, but it was several months. I do have a glass or two of wine now, but that is guaranteed to send me to sleep, so I only do that once or twice a week. It always makes me more thirsty too, so probably not a good idea to try it too soon. I am trying to cut down on the coffee at the mo, but even that's proving hard;-)

Sarah

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Welcome to BTG.

All I can say that everybody's recovery is different, the tiredness does get better with time but may not go completely. As for the light headedness, only time will tell.

Make sure that you drink plenty of water as this helps.

The info you were given about driving is wrong, the condition is notifiable to DVLA and if you don't it will invalidate your insurance.

As to the prognosis, only the medics can tell you that, so see your GP or hope that you see another doctor at your follow up appointment.

Hi Penny

Ive checked on the DVLA site and the advice there is that if you have a non causal SAH then you dont need to let them know apparently. Im going to check with some medics I know as looking at some of these threads there is a mixed opinion. I dont want to drive unless Im sure Im right but at the same time dont want to alert the dvla to something they dont need to know about. Id be interested to learn the source of your information, which may be valid.

Many thanks

Sue

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Hey there, if you are interested in a second opinion on your condition I posted a thread on the the topic.

http://www.behindthegray.net/vbulletin/showthread.php?6716-A-Second-Opinion-U.S.A

As you'll notice from stories on this board, its very common for doctors to tell us very little and to basically just say "get on with your life".

Friends, family and co-workers assume since we didnt have surgery that there is nothing wrong with us and cant understand the issues we deal with, both physical and emotional.

This site is a great resource for people with with SAH so feel free to ask questions.

btw - the comment your nurse made about you returning the hospital could be related to whether you had a "diffuse" pattern SAH or a "perimesencephalic" pattern SAH.

The diffuse pattern bleeds do carrying a small but significant risk of rebleed. Apparently its about 1-3% per year. That is opposed to almost no risk for the perimesencephalic bleeds. You might want to ask your doctors which one you had.

Edited by Surfer34
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