Esedlock

I am so glad the nerve pain is resolved. I’ve two years out and things are still changing. I know it can be hard to stay positive but our bodies/brains have amazing capacity to heal and things will improve. We are here for you. 

Awww, thanks Tina. You are always so helpful and supportive. I cannot tell you how much I appreciate it. I will start planning ahead; I tend to do too much and then pay for it. “No” is a word I need to learn to use. 😂

Hi Jim. I had a Peri SAH about two years ago and had spasms and pain in the buttocks and down my leg on one side as well. It went away after a few weeks but it was no fun. I found that I had balance difficulty on that side as well. I’ve improved tremendously through weight lifting and mobility work. It’s a process. I am so sorry you are going through this. 

Hi all,

I have posted before and am so thankful I found this forum. I referred a wonderful young mother to the forum after she had a stroke because you are all so kind and helpful. Anyway, I am 2 years out from my bleed and I still get relapses where I am exhausted and have tinnitus/brain fog, usually after an event (Halloween party this time).

Does anyone have recommendations for how they deal with this? Should I stop using my phone and computer? Should I take any supplements that might help? What’s worked for any of you? I feel frustrated but I am still happy and chugging along. I would ask my neurologist but according to docs, symptoms are gone in six months to a year. Haha. 
 

Maybe a dark room and listen to a book? Would love ideas. Thanks again for all the support. 

Thanks, @Tina

I also feel weirdly anxious when I push too hard. Did you experience that? It’s so tough because I want to know if what I am experiencing is from the PMH SAH or something else. What’s normal? I guess I just have to rest and wait it out. That’s hard. I just thought after a year, I should be fine. 
 

Thanks to everyone for letting me complain. There’s just no one who I can talk to who has been through this. 

I am having another downturn where I feel exhausted, anxious and weird. I did too much this week. 
 

First, is this normal? Is anyone else experiencing this? I am feeling great, firing on all cylinders and then I do something dumb, like go to a kick boxing class with lights/music/movement and I have an episode. 
 

Second, what kind of doctor should I see about this? My neurologist is not that kind of doctor, meaning he is clinical and not someone to see often for advice on recovery. 
 

Thanks for the help. Part of the episodes is feeling demoralized. 😒

@Compostc Thank you so much. I didn't realize there were so many resources on this site. I really appreciate it. I know what my trigger was this time: I went to a kick boxing class last night. It was WAY too much for my brain. I am going to keep learning and appreciate your help.

Hi guys,

Again, this site is a life saver. I am a little over a year from my stroke and doing great, in general.

However, I sometimes do too much and feel headachy and anxious. Does anyone have ideas to help with this?

I am going to try meditation but it is frustrating because I am never know what is going to trigger it. Sometimes, it is too much exercise; sometimes, it is too much  work/thinking.

I think this is normal, even a year later, but it is infuriating. Does anyone else have this happen?

Thanks for any ideas.

Hi I. I am actually called E so I love that. 
 

I get brain zaps but I am only five months out. The worst is the anxiety from it but know that it us normal. It actually helps me to do some breathing exercises after I have one to calm my nervous system. That might help you too! 
 

Thanks for being so awesome and inspiring. 

I also had pain and discomfort in my pelvis/ back when I had my bleed five months ago. Plus, I was very fit and strong AND then, boom, I was in the ICU for almost two weeks and in/out of bed for a month after that recovering. I had muscle pain from atrophy, I think, and that made the discomfort worse. My hips would ache like crazy but it has subsided, thankfully, so it might be blood reabsorption combined with muscle confusion. I hope he is feeling better. 

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

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.  

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? 

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. 😊

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?

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

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.