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Hi all! I am exactly two weeks from my PMH. I was released from the ICU after 12 days so I am trying to figure out how to recover. Prior to the PMH, I exercised 2+ hours a day (weights and cardio), did not drink/do drugs/smoke, and am a healthy weight. I am so fatigued but want to slowly work up to where I was. I walked a mile this morning and then my head hurt (whomp whomp) but it pretty much hurts every day as the blood is clearing from my brain.

 

I have searched for resources and there are so few. Can I have caffeine? I have not had any but should I be afraid to? Can I get my heart rate up and if so, when? I see a neuro doc this week and he should have ideas. Would love any tips for recovery (multivitamin?) or resources. I am sure this is posted all the time so thank you to all who answer. It means a lot and I feel super isolated because PMHs are so rare. 

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Hi I was out running when I had my bleed and was keen to get back to it afterwards. It took a good couple of months before I was able to start exercising again so to walk a mile after 2 weeks is impressive. I think you need to speak to your neuro doctor about how much exercise and when.

 

Give yourself time, you were fit prior to your PMH so hopefully you will be able to regain that fitness. I now regularly run 4-5 miles three times a week with no issues but working for a full day still floors me - people can suffer from different types of fatigue, mine is brain fatigue. However I do find when my brain is saying 'no', I can go for a run and then feel much better.

 

Take it slow and listen to your doctors advice and hopefully in time you'll be back to where you were.

 

Take care

Clare xx

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Clare,

 

Thank you so much for your reply. I feel so alone in this because so few people actually go through it. I am having trouble telling if I am tired or fatigued or overreacting but I am just going to take it slow. The hardest part will be letting go and taking it day by day. I want to set goals, etc. but I have no idea how much time until I see (or even if I will see) improvements.  

 

I just want to feel normal but that seems like a ways off. I am going to try to walk every day and then start weights once I get the buy-in from my neuro. I think I might be like you - it’s not the physical but the mental that really exhausts me. 
 

e

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You will see improvements but they may be slow. I think post bleed everyone has to find their new normal and often the hardest part is accepting what that is. 
 

For me it’s been a rocky road as I am so used to pushing myself. Realising that that isn’t my best path has been hard to accept and even more difficult to change. 
 

Enjoy those walks and let us know how it goes with your neuro doctor. 
 

clare xx

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Well, I had a PMNASAH two and a half weeks ago and I just want to be back to normal. Like you, Clare, I tend to push myself but I am noticing that the more I do, the worse the headache later. I also have weird things happening, like muscle spasms in my back on the side of the bleed. Plus, I feel super anxious at night. Is that normal? Any advice on that?

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You are really early days, at your stage I was still in hospital- I did have the added complication of Hydrocephalus. 
We are unable to give medical advice but the symptoms you describe seem similar to most who have had a SAH. 
 

I never felt anxious at night particularly though there are others that did. Write all your questions down and make sure you ask them at your Neuro appointment. What you describe appears normal so try not to stress, it will only make things worse. 
 

Clare xx 

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Hi @Esedlock

 

I haven't been on here in a while but like to check back in as I always remember how incredibly hard those first months were and people on this site gave me help and support when I needed it so would like to do the same for others.

 

I definitely found the new normal extremely difficult to accept. I am someone who has always pushed myself, for me I have never managed to get back to exercising at the gym but I cycle and walk alot and do yoga as they don't trigger headaches. I think it is very important to listen to your body in the early stages.

 

Everyone kept telling me it's early days but until you are through those first 6 months or a year it is hard to see that. Take one day at a time. Anxiety was and to be honest remains a huge part of my life post bleed.

 

I have had therapy that made a big difference. Night times were definitely worse. Post bleed I started listened to apps such as Calm at night that help and also podcasts as a nice distraction. Perhaps they could help you.

 

Anyway I hope you continue to recover and any questions feel free to ask on here or PM me. 

 

Take care

Charlotte 

 

 

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Thanks for the replies. I just have so many questions:

 

1. Driving. Can I drive? I am waiting for my one-month follow-up. 
 

2. Caffeine. Can I have it? I miss my tea. 
 

3. Is it normal to have a great day and then sleep almost all of the next? 
 

4. Massage. Can I get a massage? My neck and shoulders are sore and I would love one. 
 

I am not asking for medical advice; just what you all experienced. 😊

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15 minutes ago, Esedlock said:

1. Driving. Can I drive? I am waiting for my one-month follow-up. 

Sadly, in the UK,  SAH is notifiable to DVLA and you will have to wait for their decision after you have infirmed them.

 

17 minutes ago, Esedlock said:

3. Is it normal to have a great day and then sleep almost all of the next? 

Quite possible, everyone is different in their recovery. Try doing much less on the "great day" and see what happens the following day.

 

As for your other 2 questions, they need to be asked of your medical professionals. 

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12 hours ago, Esedlock said:

3. Is it normal to have a great day and then sleep almost all of the next? 

 

I'd say very normal its just a case of balance but in those early days most definatly do less, sleep lots its all recovery... (for me that was the case anyway)

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17 hours ago, Esedlock said:

 

2. Caffeine. Can I have it? I miss my tea. 

Wasn't told to avoid by my consultant and only avoided it for the first few months after my SAH - I drink about 6 cups of coffee a day and haven't had any adverse reactions.  It is supposed to raise blood pressure though, so a good idea to check with your specialist for their opinion. Also, it may cause headaches - try a good quality decaf tea; you can barely tell the difference if you buy Yorkshire Tea (other teas are available :-))

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Hi Esedlock

 

Guidance on the gov.uk site with regard to non-aneurysmal SAH and driving is:

 

✘- Must not drive and must notify DVLA.
Driving may resume on clinical confirmation of recovery and, if no other cause has been identified, documented normal cerebrovascular imaging. 

 

As you say you are due a follow up very soon, your consultant should tell you then if you can drive. Once you have clinical confirmation the DVLA should allow you to drive whilst they complete their own formal investigations.

 

Yes it is very common to have a great day and then sleep almost all the next day, especially so early on in recovery.

 

Take care

Susie

Xx
 

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