New member looking for support, and answers to some questions. Tinnitus/sex/moving on with my life

[Mistina]

Hi everyone! I'm Mistina, age 38, a new member of the group.

On March 20th 2015 I had a NA subarachnoid hemorrhage during sex. Luckily I felt strangely enough that I insisted my husband rush me to the ER. Although I was still technically "awake" I blacked out right around the time they wheeled me back into the hospital room. I don't remember anything for about a day or two. When I came to I was in the Neuro ICU at another hospital with a drain in my head surrounded by friends. The bleed pattern presented itself like an aneurysmal bleed. Everyone was extremely concerned.

I spent two weeks in the ICU. Was able to have the shunt removed (thankfully). After my 3rd angiogram I was told that it was a non-aneurysmal bleed and likely just a vein that bled out. I was given a clean bill of health. I have no deficits, the fatigue has disappeared (although when I exercise I do feel it a bit) and the headaches come and go. I am now almost 8 months post hemorrhage and I have to say, I do feel VERY VERY fortunate. But I have a lot of concerns and I definitely have PTSD from the event.

Some questions:

--I am frightened to have an orgasm! How and when will this pass? I live in so much fear that this part of my life is over. The doctors who SAVED MY LIFE have told me that I can go on living just as I did before with no restrictions. Yet I can't be rational and trust them.

--Will I be able to have a baby? This is another fear, not being able to have a family.

--In the last couple of months I've noticed that my tinnitus is much worse. Didn't notice it until recently. I am a musician and definitely had it before my illness but the timing of this getting worse just seems weird to me. 6 months after... But not immediately after? It's not the wooshing or pulsating tinnitus I've read can be of concern with aneurysms, just annoying high pitched sound that seems much louder than I ever remember it being before. Should I be worried?

Every time my head hurts, or I feel off at all I cry. I worry that it's going to happen again. I suspect that this is completely normal. I was told that "some other terrible thing is more likely to befall me" than another hemorrhage. Not the gentlest words from my doctors, but I think they were really trying to hit it home that this will not happen to me again and it's rare to begin with!

 

When I think about the time that I was blacked out I also cry. The event was so sudden, and I just disappeared. It could have been the end of my life. I guess I should be thankful that I would not have known any better. It was quick. As I head towards middle age I am reconciling with my mortality anyway. To have this close encounter, I have to say I am very shaken up. I am not a spiritual person, so it has been hard.

Thanks for listening. I am looking for long time survivors advice on how to move forward. Reassurance that life can go on. I know these things take time, and I feel bad that I need so much reassurance. I feel bad that while I am completely aware that it's irrational, it's hard for me to trust my doctors words. I suspect time is the only cure. I think knowing other survivors will help me as well. I would also like to say, it's appalling the lack of resources for we survivors. I've emailed my doctors for reassurance-- and get no response. It seems like online support is all we have. Thanks for reading.

[jess]

Hi mistina

Firstly welcome to the group glad you found us secondly I am not a doctor but I will give you my experiences xxx

1) orgasm hasn't caused me any problems in saying that I didn't have my sah during sex so can see why you are frightened xxx

2) I have had 4 pregnancies and 2 children since my sah (lost two between 12 and 13 weeks xxx

3) tinnitus it drives me crazy even 13years later but don't get it as often xxx

4) the worry of having another I still feel like that but not all the time it does get easier as time goes on xxx

Hope you continue to improve xxx

[ClareM]

Hi Mistina

 

Your NASAH sounds almost copybook to mine other than I was running when mine happened. Mine was in Feb 2015 so we are around the same recovery time too.

Like you my fatigue is no where near as bad as it was though I do still get tired. My physical fitness is good but my memory drives me mad! I too think I suffer from a bit of PTSD, every time I hear an ambulance it reminds me of my event and yes, I do worry too if it could happen again.

However I am nearly 10 months on and thank my lucky stars that I survived. Like you I blacked out in hospital and came to a few days later in the Neuro unit and like you I have thought what if? But I am positive, my life has changed in small ways but I actually quite like it. I don't get so stressed and have much more of a 'so be it' attitude to life.

Things will get better, keep coming to BTG for support. We've all been there and understand.

 

Clare xx

[Winb143]

Hi Mistina ,

I had sex the night before I passed out and was tired all day Friday and had a blood taste in my mouth and nose, thought nothing of it and went to bed to rest up !!

 

 

Had shower started to clean cupboards down and my Sister rang me, I still felt floaty and unwell and she went on and on about her son.

My hubby came in early and I said to my Sis "better go Hubs is home" she still went on !! I was feeling really rough and stirred the curry I was cooking. I woke up approx. 1 year later after having Ventriculitis Sepsis and UTI.

 

Glad I cannot remember anything until shunt was put in for hydrocephalus, I also get buzzing and seashell noise. It has lessened though but when I stress it gets worse.  Surgeon told me "No Stress" !! 

 

There is a woman on here like Jess who also had a baby after an Anni she'll be able to help also with Jess  xx

 

Good luck and sounds like you was lucky xxx although it may not seem like it at moment

 

WinB143 xxxx

[Daffodil]

Mistina. Don't feel bad for feeling worried, for being scared, for asking for help. These are the most natural things in the world post SAH and just extend yourself the kindness of knowing it's ok, you don't just bounce back to where you were.

Jess has hopefully reassured you that babies and therefore the act of making them is ok and possible in your future but I imagine the fear of sex ,because this is when your SAH occurred , may be pretty large in your mind. Just a thought , and I don't wish to offend anyone here, but you could maybe try starting things slowly and gently being intimate with your partner and taking it your pace. I say this because then you can put your mind at ease maybe just on your own terms, build your confidence that it's all going to be ok. And it will be.

Feeling fearful isn't uncommon but left unchecked can start to rule you so please go and talk to someone and get some counselling, it will really help you. You had a traumatic event and brain surgery and so these aren't small things that can easily be taken in stride, they knock us of balance and then we need to find a new centre of gravity. And you will.

Time will heal, scars will fade, fear will ease. Be kind whilst that process unfolds for you.

[iola]

Hi,

I'm so sorry this happened to you. I had a NASAH as well. Yes, the docotrs tell you to go live your life and you think, well, okay, but what the heck just happened here! All your concerns and fears are very common. I am over two years out and still have some weirdness and headaches but it does get better time helps.

[Bman250]

Hi Mistina,,

I too had my SAH on this past New Years Eve right after sex and was in the shower, as a result have had a problem with sex ever since.

 

It's not that I don't have the desire it's more of a performance issue with me.

 

My wife has been very understanding and I've had some counseling which has helped, though not crazy about the drugs available to males.

 

I also just blacked out and was gone for 2-3 days, spent 2 weeks in nuero ICU removed my shunt, three MRAs later was given the all clear and sent to rehab for 2 weeks.

 

All I can say is trust those who love you and the professionals in your life. It was difficult and fearful to involve myself in anything that required exertion so I know and understand your fear. Tread lightly and you will eventually gain confidence.

 

It all gets better with time, count your blessings, go out and dance, exercise, drink plenty of water and have that baby you can do it! We've all been where you are keep smiling and play your music!

Take care,

Bill C

[kpaggett]

Mistina,

 

I have PTSD as well.  I have gotten so that I can manage it and no one knows that I have it unless I tell them, but the lack of sleep, the hyper-vigilance in all things, the preparatory anxiety of doing new things, the thoughts of the event.  I can say that the thoughts are not 24/7 anymore and my startle response, while still super strong, initiates after fewer and fewer things.

 

I haven't been able to orgasm since and it's been over 4 years.  For me, the event didn't happen in conjunction to any association with sex, but you really have to let go of all control over yourself to orgasm and I just can't do that, apparently.  I really do think it is part of the PTSD instead of the hemorrhage.  It is all psychological, but still so real.  I have come to enjoy other parts of intimacy as much...but it is different.

 

I too am a musician and had tinnitus that came and went later.  I was actually getting it right before the hemorrhage often and then it totally disappeared right afterwards.  Then a different tinnitus started up and it kept changing and then it all went away.  I also had a period of perfect pitch which was so annoying!  The piano sounded like Honky-tonk and the guitar sounded so out of tune.  Strings were OK to listen to I think because string players tune each note as they play.

 

The more I talk to people, the more I find out that many of us have symptoms that come and go depending on what other things are happening around us or within us.  A cold, a new schedule, pregnancy, husband leaving on a trip for work, etc.  Sometimes, you get symptoms without any identifiable explanation, but at some point, you recognize what you have to do to combat them in the moment when they arise and other ones, you just have to ride out and accept they are there that day.

 

That feeling of fearing another bleed.  We have ALL had that.  Time really helps.  As you see yourself day after day not having this happen again, you'll feel more and more confident.  Also, it helped me to read statistics at first...and they're just like your doctor said for NASAH survivors.

 

The last thing is crying about things.  I still do that, although it isn't nearly as much anymore (I used to cry 6/day for about 48min each time...my husband started timing them to reassure me that it wasn't psychological, but rather physiological and not under my control).

I do think it is normal to feel sad when something like this happens as well.  I also found that I am super sensitive to poignant stuff...kind of like that 'Warriors heart' thing.  I don't know if it is from the hemorrhage or from the PTSD, but it is hard to deal with as it has nothing, in my case, to do with depression.  I hope this will lesson over time.  I mostly have issues in private now and only for about 5min each time.

 

Keep hopeful,

~Kris

[Mistina]

Thanks so much to everyone for the very thoughtful responses. It's very helpful to hear from you, I feel so reassured. What a wonderful resource to have. I am trying to focus on my improvements, they really do happen suddenly and seemingly out of nowhere just as the doctors said they would.

I also realized that I posted above on the 21st, the day after my 8 month anniversary; this is the first month the 20th has come to pass without me thinking of it as soon as I woke up and marking yet another month off my recovery calendar. This is progress I think. The tinnitus is really my biggest complaint currently but I intend to get my hearing checked and find ways to cope.

Thanks so much for taking the time to comment! Means the world, my new friends!

[Mistina]

Had a very rough week. I've been crying a lot and stressed/bothered by the tinnitus. Audiologist appointment to test my hearing was cancelled today due to the doctor being sick. Drats! All this compounded by the fact that a friend of mine contacted me to say she's had a SAH as well!!! I just can't believe it. I am grieving for her, knowing everything she is going through is really affecting me. So so terrible to hear a friend has suffered the same thing. Unbelievable really.

But while It is horrible, I at least know I can point her in the right direction (here!) for answers and support and I can help her due to my first hand experience.  Still rough stuff, talk about reliving it! 

[kempse]

That is quite incredible Mistina, no wonder you have shed so many tears this week.  Your support for each other over the coming weeks and months will be invaluble though and I would imagine your friendship will in time become even stronger as a result. 

 

I hope your audiologist appt can be rearranged soon and the coming week is a little easier for you,

 

Take care,

Sarah

[Debbie]

I am happy that I found my way back to this sight! Yesterday I read an article I think it was titled a letter from your (or) my brain. I am sorry to ask but can someone help mw find that article? My brain bleed September 19, 2015. Struggling.

[Debbie]

I would also like to ask if posts here are posted on my Facebook. Thank you very much.

[Super Mario]

Debbie, welcome to BTG. You may get more replies if you start your own thread in "Introduce Yourself"

 

A letter from your brain
http://web.behindthegray.net/index.php?app=core&module=search&do=search&andor_type=&sid=df3bd081bc0a23f560fab803a0f0adec&&search_app_filters[ccs][pages][sortKey]=date&search_term=a+letter+from+my+brain&search_app=ccs&search_app_filters[ccs][searchInKey]=database_1

 

Any posts on here do not appear on facebook.

[ClareM]

Hi Debbie

 

Start a thread on Introduce yourself, look forward to hearing your story. We are here to help you and if you are struggling Behind the Grey can help. Certainly helped me, it's a lonely experience. Message me if you are stuck!

 

Clare xx

[Winb143]

See what a helpful lot they are on here xx 

 

So good to find a clique of us all having same or similar problems and it is such a help.

 

So Cheer up when possible and No Stress !! my surgeon told me that so I sing !! I'll apologise later lol xx

 

Good luck xxxx

[Debbie]

I would like to thank those who responded to my post several days ago. I have found my way back here again. Still struggling but happy to find this site again. Debbie

[Tina]

Debbie have PM'd you on how to start a new topic in 'Introduce yourself section'. with a link...hope it helps, glad you found your way back. Shout if need any help  xx

[Winb143]

Ask Debbie do not be afraid I used to forget what messages I had replied to and who said what but we have all been there.

 

You'll find your way around soon xxx and the Mods will help us xxx

 

Keep Well

 

Win xx

[Debbie]

I cannot reply to messages. and cannot enter a chat room. I don' know what I am doing wrong.

[Colleen]

Hi Mistina,

Well, I can't help you with these issues because I have never gone in the Chat room or messaged anyone.. However , I can suggest the Green room, where we talk about daily stuff and rant when necessary. This is also where Win does most of her singing LOL.

I hope you are doing better and have had your appointment with the audiologist. I think you will find this site will help you cope with all you're going through.

Colleen

[Winb143]

Mistina

 

Have you heard from the audiologist (whatever he is called lol).

 

Let us know how you get on with him/her

 

Good luck

 

Win xx xx

[Mistina]

Win, My audiologist appointments have been moved twice! Not seen her yet. I'm doing a bit better, it comes and goes in volume, thankfully. Not the full on ringing it was there for a bit. My friend who had a bleed recently suffered tinnitus but hers seems to have resolved. Happy for her.

As for me, been back and forth emotionally, but better for the most part. I am adjusting to my new self. The fatigue, the shoulder and neck tension. Accepting it all much better now. Still want to see a therapist. Need to get on that

[Winb143]

Mistina as already said it is a long haul and you sound like you are getting used to the way our bodies work after a bleed of the brain.

 

You will get there Mistina and if you ever worry about anything come on here or if really worried always see Doc.

 

I do hope you see therapist and good luck xx

 

Keep in touch and let us know when you have a nearly normal day they are few but you will get there xx

 

Good Luck  

 

Win xx xx

[goldenwillow]

7 years post, 2 years knowing what happened and figuring that out.

I also wanted to send support in regards to pregnancy. We conceived 1 month after my SAH, had made the decision to have a little one a month or so prior. I birthed our baby safely at home with zero complications. I also had undiagnosed Graves Disease to boot. Healthy, alert baby boy was the gift given to us