Recovery Info / Help

[Esedlock]

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. 

[ClareM]

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

[Esedlock]

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

[ClareM]

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

[Esedlock]

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?

[ClareM]

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 

[CharlieD]

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 

 

 

[Louise]

Hi there

 

early days are scarry but slow and easy does it...  keep well hydrated and listen to your body..

 

take care.

[Esedlock]

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. 😊

[Super Mario]

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. 

[Louise]

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)

[Skippy]

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 )

[Susan]

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
 

[Esedlock]

I am almost three weeks from my PMNASAH and I still have headaches, feel unmotivated and generally tired. I feel like I am crazy because there is so little info on recovery. Some say I should be okay in a couple weeks. That sounds wrong but what do I know? I cannot find any resources on nonaneurysmal perimesencephalic subarachnoid hemorrhage (PMSAH) recovery. Anyone have ideas? 

[CharlieD]

I don't know who it was that told you you should be OK after a couple of weeks, but I have maybe heard of one person who had that kind of recovery, and I have read alot over the last few years so please don't feel there is anything unusual about not feeling recovered yet.  I found a couple of really useful and reassuring documents on NHS sites but had to trawl through to find them. This one covers alot and gives a good outline. 

 

http://www.srft.nhs.uk/EasysiteWeb/getresource.axd?AssetID=53327&type=full&servicetype=Inline

 

 

 

 

 

[Louise]

Everyone is different.. their SAH or whatever is different - so I think we all just recover as and when, but 3wks is a very short time. As I've said slow and easy keep hydrated and rest lots even if you think you're ok ...'rest' 

 

I also think this 3 weeks  or 3 months is just a base line they give us really....  

 

take care and stay-safe.

[Rory]

Regarding recovery time, my neurologist said it would be about 8 weeks until I got back to my baseline, but that was really optimistic. That seems to be a pattern.

 

I'm almost 10 months out, and while overall feeling pretty good, I occasionally get one of those unique headaches. But for the most part I'm back doing the things I used to do. As for driving, in the US the doctor just tells you not to, in my case for 6 weeks--our DMV never got involved.

 

In the early days (after the 6 weeks), fast highway driving was really uncomfortable and led to exhaustion and more headache, but driving on the local streets for short jaunts was OK.

 

I can just confirm what everyone here has been saying--be patient, listen to your body, and get rest. It will get better, but it'll probably be a matter of months, not weeks. And I never stopped drinking my usual moderate volume of coffee--in fact they brought it to me while I was in the hospital.

 

[Colleen]

Good morning,  

My SAH was caused by a ruptured aneurysm, so a bit different, but overall the brain does not like being bathed in blood.  It takes a very good while to recover from that and you are experiencing the typical aftermath.  Fatigue can go on for quite awhile and the one good day followed by a crash is not unusual.

 

Regarding caffeine, I do recall my neuro telling me if I was used to having it the withdrawal could aggravate the headaches, so limited amounts could actually help.  That said, I mainly kept to decaf and herbal teas.  You should consult your physician to be sure.

 

Regarding exercise, I was instructed to limit weight bearing, pushing, and pulling,  but walking was ok.  I personally would not have wanted anything that caused pounding or jarring for quite a long time.  Each case is individually its own, so you really need to feel what you are up to and heed your physician's cautions.

 

Best wishes on the journey, Colleen

[V.Mama]

On 16/10/2021 at 19:01, Esedlock said:

I am almost three weeks from my PMNASAH and I still have headaches, feel unmotivated and generally tired. I feel like I am crazy because there is so little info on recovery. Some say I should be okay in a couple weeks. That sounds wrong but what do I know? I cannot find any resources on nonaneurysmal perimesencephalic subarachnoid hemorrhage (PMSAH) recovery. Anyone have ideas? 

 

Hello @Esedlock, I'm glad you found this forum so quickly.  My husband had an NASAH in May 2019.  He was still in hospital at 3 weeks, he developed hydrocephalus and was very sick.   When he returned home he was extremely frail for months. You are doing amazingly to be so active so soon.  It sounds like you're really keen to know 'when' you will be recovered.  

 

From my observation and reading, everyone is super unique with that, and no one can actually give you a definitive answer, even Neurologists will give you a vague answer.  Some people report ongoing improvements 12 years later.  

 

Some people, like my husband, experience relapses.  He has been working too much lately and experienced a recurrence of the daily headaches, head pain on bending over, stabbing pain at the site of his SAH, and extreme fatigue.  Like others, he exercises, is really fitness focussed, regularly cycles 60km, and runs 5 km, but brain work and concentration (he's a train driver) really wear him out in an entirely different way to being physically activel. 

 

I recall the advice to him in the early days was to drink plenty of water, to rest when his body and brain asked him too.  However, sometimes when his brain is fatigued, a gentle cycle helps him to feel better.  The biggest challenge for him is to not overdo things.  like you, he wants to find his limits, and be at his best.  Sometimes he overdoes things, and then he knows all about it.  

 

Time, patience, gentle perseverance and being willing to manage your expectations seem to be the key. 

 

Take care

[Carolyn250]

Hi there 

whereabouts in the UK are you?

 

I think support in UK for this condition is abysmal!

please listen to posts about taking time. You aren’t going to “get back to normal” quickly and you can’t “push through” you just gave to be patient. There is no magic formula sadly

 

I am near Leeds and 18 months in. It took a 9 months to a year before I started to feel normal on a regular and daily basis although have recently had a set back 

be patient, listen to your body and head, good luck with your recovery. It will happen 🙏🏼👏👏

[iola]

Hi,

 

i had mine almost 9 years ago and I remember it like it was yesterday.  I wanted to get back to life and I pushed and I found that with a head injury it’s different than mending a broken arm.  Sometimes the more you do the more you head says forget it.  

 

I remember being at the beach about 2 mos after mine and walking down the beach overcome with fatigue.  I honestly did not know if I was gonna make it back and did not tell anyone just how exhausted I was but the next day I was so tired and my head hurt and was very heavy headed.  I had done too much.  

 

 My dr told me to make no mistake that I’d had a life changing event and would be a changed person because of it and it would take 18 mos to 2 yrs to feel some kinda normal.  He was right.

 

I have learned with a head injury you can jump three steps forward and four steps back and it’s infuriating but you learn to press on.  Today, I am active and do just about everything I did before except roller coasters.  I can’t do that.

 

 It’s a long walk back but you will get there but remember your brain is the motor trying to repair itself so it can take care of the body.  The brain needs stimulation but it also needs rest.  

 

Be be kind to yourself.

 

iola

 

[Esedlock]

Whelp, it is me again. I was doing great and exercising every day (weight lifting and walking at least an hour). Things were going well and I was losing weight. About a week ago, I started to feel what I describe as stroke-y again - hard to concentrate, otherworldly feeling, shorter fuse, fatigue, tough to look at computers/phone.

 

Anyone have ideas for recovery or has anyone else been through this? I am also trying to go off Paxil, which I have been on since I had my girls 17 years ago. Needless to say, a lot is going on and any advice would be wonderful. Thanks to everyone on this forum - you are all inspiring and awesome.  

[Esedlock]

On 27/01/2022 at 21:08, iola said:

Hi,

 

i had mine almost 9 years ago and I remember it like it was yesterday.  I wanted to get back to life and I pushed and I found that with a head injury it’s different than mending a broken arm.  Sometimes the more you do the more you head says forget it.  

 

I remember being at the beach about 2 mos after mine and walking down the beach overcome with fatigue.  I honestly did not know if I was gonna make it back and did not tell anyone just how exhausted I was but the next day I was so tired and my head hurt and was very heavy headed.  I had done too much.  

 

 My dr told me to make no mistake that I’d had a life changing event and would be a changed person because of it and it would take 18 mos to 2 yrs to feel some kinda normal.  He was right.

 

I have learned with a head injury you can jump three steps forward and four steps back and it’s infuriating but you learn to press on.  Today, I am active and do just about everything I did before except roller coasters.  I can’t do that.

 

 It’s a long walk back but you will get there but remember your brain is the motor trying to repair itself so it can take care of the body.  The brain needs stimulation but it also needs rest.  

 

Be be kind to yourself.

 

iola

 

Thanks, Iola. I appreciate it. I am not sure how to rest my brain - I just feel so bored. Lol

[Tina]

8 hours ago, Esedlock said:

Whelp, it is me again. I was doing great and exercising every day (weight lifting and walking at least an hour). Things were going well and I was losing weight. About a week ago, I started to feel what I describe as stroke-y again - hard to concentrate, otherworldly feeling, shorter fuse, fatigue, tough to look at computers/phone.

 

Anyone have ideas for recovery or has anyone else been through this? I am also trying to go off Paxil, which I have been on since I had my girls 17 years ago. Needless to say, a lot is going on and any advice would be wonderful. Thanks to everyone on this forum - you are all inspiring and awesome.  

 

Hi E  

So sorry to hear you are feeling stroke-y again. It may just be you are pushing too hard and your body telling you to slow down. Or maybe because your are trying to go off Paxil.

If you continue to feel this way definitely go and see your Doctor, just for peace of mind.

 

Wishing you well, please keep us updated on how you are doing.

Take care

Tina xx