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Posted

Hi there,

 

I feel so fortunate to have found this group online.  It makes me feel human again as I can relate to everything that is being said.  I am 2 months out of a brain bleed that happened for no rhyme or reason while running on a treadmill at the gym.

 

 I've worked out my whole life so it was nothing strenuous to me.  I spent 5 days in ICU and 7 additional days with all the same symptoms I'm reading, obviously headaches and major back spasms.  I had 2 angiograms in the hospital a week apart to check for aneurysms or malformations which came back negative and will be going for a 3rd angiogram on Thursday to make sure since they are unclear why the bleed happened.  

 

They are leaning towards a small vein that bled but are not sure if a tiny aneurysm burst.  2 things I'm wondering......  have you all had angiograms and this is very private but I read that sex and orgasm is the leading cause of these things.  Has anyone read this as well and have any input.  I still so scared to do anything at this point and I'm reading people are back at the gym 2 months out.

 

 Thanks you so much for your help, support and input.  I appreciate it so much!

  • Like 1
Posted

Hi Kris

 

 

Welcome to the site.  Glad you have come out the other side, good luck on the angio on Thursday. There are many reasons for bleeds and non aneurysms bleeds which your seem to be related to. The drs will set you straight when you get a follow up appointment

 

There are many myths and suggestions relating to sah. There is one related to the loo as well  i.e. straining too much. There is no rhyme or reason one has a sah. It is though and has been proven its normally genetics

 

I would start by taking baby steps first drink plenty of water and above all listen to your body. Don't over stretch doing things,  sleep when your body wants to. Sex is not the main reason for sah  its when the anni ruptures on its own cause normally because the walls have weakened and they let go. Evidence shows more happen when things seem to be going ok but there is a possibility during sex, but that will happen immediately not down the line

 

I would suggest that you have a second chance of a new life one step at a time and one day at a time there will be the odd step backwards but many steps forwards good luck and hope to hear from you soon with updates

  • Like 4
Posted

Hi - I'm on about the same timeline as you are. 6 weeks post - no known cause. I understand from this great site that my continuing symptoms - headache, fatigue, strange head sensations are all quite typical. For the time being I'm avoiding anything that is strenuous as I'm still working on stabilizing my blood pressure. I find it disconcerting to not know exactly why this occurred. However, I am trying to ease back with moderate walks and swimming. I'm sure that others who have been recovering longer will have more perspective on this - and be sure to check with your health care providers. 

Good luck to you. 

  • Like 1
Posted

Thank you so much for your responses.  Although I do not wish what I went through on anyone it is nice to know that people here have been through it and can identify.  My neurologist told me to not strain in any way in the bathroom.  He said there's a vein that is connected.  He said nothing strenuous at all until after this angiogram and then I'm sure I'll get the all clear if everything looks good.  

 

I have to baby step with everything because I still have the headaches, fatigue, feeling dizzy and off, nauseous and have super sensitive senses especially hearing still, etc, etc, etc.  I also am battling anxiety because it came on so suddenly and was so painful and traumatic but I am not stranger to fighting that demon and feel like I have a pretty good hold on it.  

 

I'm interested in what your doctors are telling you as opposed to what mine says.  What did they say the recovery time was for you? Mine said 6-8 weeks before I even start to feel normal.  What did they say about driving?  Mine said I can drive but I have a very hard time and have only gone on back roads.  What do they say about the percentage of it happening again to you?  Mine said I have a 3% chance of it happening because it's already happened once which was a 1% chance to begin with.  What did they say the reasoning is for you?  

 

Mine said inflammation could have played a part because I have Rheumatoid Arthritis and they said my bleeding disorder could have also had a hand in it, which is a platelet aggregate disorder.  Apparently my platelets don't want to work correctly to clot properly.  Thank you again to anyone that responds.  I appreciate so much!

  • Like 1
Posted

Hi Kris

 

Your neurologist maybe right in respect of straining, you will have many a symptom which worries you as you are still in the very very early days of recovery. The headaches and other symptoms are normal as the brain has got some blood surrounding it and it will take up to three months for that blood to be reabsorbed back into the body. Try not to allow the anxiety to take over,  the bleed happened and you survived.  You are talking to people who have gone through exactly the same and its very unlikely to happen again. Many who have suffered a NSAH are now leading normal lives with very little after effects and some with very minor effects. Enjoy your new life 

 

Recovery can be years not weeks, but as you progress in your recovery the less you take notice of it. I would recommend that you drive when you feel better. You don't say if you are in the UK or not but if you are be wary because bleeds of the brain is a condition which is recorded to the DVLA by the surgeon by law, hence you might be breaking the law. We wouldn't like that, take one step at a time, please drink plenty of water and try to relax a lot more. 

Best wishes

  • Like 3
Posted

Krislwal

 

I was told to take it easy for 3 months (I am a runner so no running during that time). I then had a follow up MRI and was cleared to go back to normal activities. So I have been fortunate. Just some headaches, fatigue, mood swings occasionally. As for sex, I have been married for almost 30 years. So I have no idea if that is safe or not. ☹️

 

Beat wishes

 

Chris

Posted

Hi Kris

 

Just take one day at a time, keep hydrated with lots of water. It does help with the headaches.  Good luck and safe motoring should you continue. 

Take care.

Posted
On 6/26/2017 at 17:12, Krislwal said:

What do they say about the percentage of it happening again to you?  Mine said I have a 3% chance of it happening because it's already happened once which was a 1% chance to begin with.  What did they say the reasoning is for you?  

 

That's a interesting statistic you've been given there.  My specialist told me, that as I am a smoker, I have a 3% chance of it happening again, whereas if I stop smoking, I'll have a 1% chance of it happening again.

 

I think a lot of these statistics are geographical and not global - so what might be classed as the correct statistic in the US or even in your State, might not be the same in another State or another country.  It would help if there was a Global database for these sort of things, but I can't see that happening.

 

Recovery is a very individual thing.  The chances of it happening again??  I don't think anyone can really say if they don't know what caused it in the first place.  No one knows why I have an aneurysm: how fast it grew, how long it had been there etc. so I don't see that anyone can realistically tell me what the chances of it happening again are.

Posted

Makes perfect sense Skippy.  Reading through different threads and posts I definitely see a difference in what people's doctors say their recovery time is so I thought I'd ask about other things as well.  I guess we've all been through trauma so the idea of it happening again is so scary.  I know chances are slim but it's still there just like the chance to get it in the first place.  Thanks for your response.  I appreciate it.

  • Like 1
Posted

My doctor said based on statistics, the chance of it happening again is the same as the chance it happens at all.  He said it would be like being hit by lightening twice.  So I try to believe that.

Posted

Hi Chris.....  I've heard that as well but it's still hard to wrap my brain around it.  I guess time will heal.  Thank you for responding!

  • Like 1
Posted

Hi,

Welcome to btg!

 

My surgeon told me lots of people walk around with aneurysms and don't even know it, but it's the chance of rupture that is important. He said in most cases it is minimal and no one knows for sure what triggers it. Research into causes is also very low and poorly funded due to it's low occurrence per head of population. That is just his opinion and his guess is as good as yours or mine.

 

Sensible living  is the way I choose to live now. I avoid sport with head contact, keep blood pressure down, avoid stress as much as I can and stay hydrated. I don't  smoke and I drink in moderation.

 

Good luck

 

  • Like 1
Posted

Hi Kris,

 

I had an SAH4  and I drank, smoked and worked with Hubby so a lot of stress. 

I was very ill after my bleed with other things like Ventriculitis,  Sepsis etc.  People gave up on me but not my Family.

 

My daughter found this site and I have not looked back since.  

I do keep away from people telling me sad sob stories as I cannot take others problems I try and surround myself with happiness

 

So just take each day as it comes  and keep happy if  possible, remember back before bleed and fun moments when you laughed until you cried.

 

Be happy and take it one day at a time, some days are better than others.  We will all get there eventually.  There being a good place xxxx

 

Good luck

Winb143 xxxx

 

  • Like 2
Posted

Thank you!!! I'm so glad everyone is so positive here.  I made the mistake of googling stories while I was in the hospital and it really did me in!! I stay away from anything negative now.  This site has been amazing because everyone can identify with each other in one form or another.  It makes me feel so much better about my situation and I feel like I get so much more information than I would from any other avenue.  Even the doctors are very cautious on what they say.  Here people have been survivors for years and can speak about it and tell you some symptoms they may still have and that you're not crazy!  I really do appreciate all the support of each and every one of you beautiful people so thank you from the bottom of my heart!

  • Like 2
Posted

Chris G....  I just went back through the posts and saw your comment on being married for 30 years!  Congratulations to you on that!  I almost made it to 15 but divorced and met someone fabulous so I have had a second chance on life and it has been amazing!  Then this set back happened.  Taking it day by day but your comment was hilarious!!!

  • Like 2
Posted

Remember - Google is NOT your friend :-D  My  SAH was nearly 11 years ago and I've been on this site since then (the 9th member to join!)  I don't know where I'd be without the support and openness of people on here.  

 

Its great to see how people progress in their recovery too and to know that you might have played a part in alleviating fears and encouraging people to stay strong is all the reward we could ask for.

 

I hope that we help you through this tough time too xx

  • Like 3
Posted

Change happens - it's how you deal with it that counts.  Nothing ever stays the same in life.

 

Don't lie down, get up and at it and face it down to make the most of your second chance at life.  Easier said than done, I know, but at least you will have given it your best shot and you will never then regret it and say "What if...?"

 

It comes at you from different angles, internal, external, fast, slow, surprise, anticipated etc.  Your response to it also has to be as flexible to be able to deal with it as best you can!

 

Good luck,

 

Macca

  • Like 1
Posted

Hi Kris, I always tell everyone to SMILE lots everyday, it will make you feel better. My husband had an acute stroke three and a half weeks ago and yesterday we joined a new local club to play Boccia which is a type of sit down boules and we loved it and are looking forward to next weeks session. Others are right, nothing ever stays the same but different can be good too. Live for the day. 

  • Like 1
Posted

Hi thanks..... after about 3 hours and the stress of it all it was canceled due to my period!!!  The doctor came in and said because it was elective and I have a bleeding disorder he didn't feel comfortable taking any chances.  It is now rescheduled for July 11th.  

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