sex (sorry selma - ill keep it clean)

[burdzmom]

does your head feel horrible pain afterwards? i a barely able to function afterwards. (not any crazy stuff goin on here either)
really i have learned to limit those activities that cause me such discomfort afterwards that i had to take some pain meds before getting online and in bed.
so, any thoughts??

[selmaS]

  Thanks for the male prospective.....it is good to see both sides....

I think this was one of the hardest things to convey to my DH...but as I mentioned I was so glad the NS approached this topic in front of my DH so he finally understood it was not him or me being uninterested....it is a diff topic to broach.

[frankie_rush]

Everyone here is a woman, I am a man on the opposite side.  I know it does make you frustrated and the other person feel like something is wrong with them. Far as the pain you all have is a little different for me.  Mine is in the shoulders and neck some.  Far as the feeling in some places that comes and goes, and it can be when you least expect it.  As far as to having a piece of the pie is having a different way so their is no pain.  But like lovely101 said toys help.  But it will not take that part of me away.

[selmaS]

  Hi and welcome to the Chiari forum.

WOW, ur partner sent u here...that is great one, he understands and he knew about us....or that u could find help online that is great !!

Not all Drs agree that Chiari affects us in the many ways it does so it is very difficult to get family and friends to.

Not sure if a OBGYN would be of ne help...but mayb a NL...or try contacting Diane Mueller she is a nurse with Dr Oro and has co-wrote books on Chiari and pregnancy, she may know a bit more about this issue and what we can try.....

This is something I have yet to look into...

[PezzQT]

I am 27 and haven't been able to "enjoy" myself sense i was preop- 7 years ago. It ruined my marriage and countless other relationships. I've never had a big O because Im too afraid of the pain!
Has anyone ever tried a perk before had or even a lorazapan?
I finally told a partner about it and he understood, (and sent me here). My PCP is a man and i feel like a moron asking for help with it.
Tips or tricks?
Heidi

[selmaS]

I must add, I was soooooooooo happy that the NS asked about this topic in front of DH so he now understood what I was trying to tell him....
There r times I want nothing more than to share my love with him, but feel I can not....he never really understood...I would say there is something just not right...besides getting the HA's or back pains....

I do u explain pelvic numbness?

[denverluv]

I don't think this a taboo subject - I def. think it needs to be talked about, because sex it a very natual part of our lives, and the Chiari DOES take away from that. I think any and all ideas we have we owe it to each other to share. :)

[Givenstrength]

Lovely... I'm with you there girl!! We have plenty to chose from nightly and it does help! Especially for when I want it over with quickly!

[xmelax35]

Yes I get pain too! My head hurts/neck hurts and my back hurts along with my legs. It is awful! I can't wait till the day I feel better and it is not so painful. I even apologized to my husband for the lack of and he said that I had nothing to worry about...he loves me no matter what.

[Lovely101]

I am 21 and my live-in bf is 25 so... obviously... we are still VERY active in this subject!  Due to my lovely brain I find myself trying to not be as rough or 'acrobatic' LOL as i used to be. But this is one activity that chiari will NOT take from me!
However, just the other night we discovered something that really helps give our intimate life a boost again without hurting my head more!  Get some toys ladies! lol maybe this is TMI or rated R.... but some vibrating toys amp it up for both! And dont Increase strain on the brain!
Just thought i'd throw that out there! :D
Have a great day all!

[Givenstrength]

Lol yep!

[denverluv]

LOL- Right? ANd if you continue to give your honey really good sex he forgets about the undone house work- lesson learned really quickly LOL- Oh, I will have a tendency to pick my things up when no one is home, then on Saturdays wake up the whole house and annouce that I have nothing laying about so how unfair that they would leave all the cleaning to me after I have run them around, made lunches, and cooked breakfast and dinner every day, not to mention any other misc "mom - babe- can you......." Then point to each thing that is each persons and say "see.. that's yours .... see... that's your's....The house gets cleaned up pretty quickly after that :)

[Givenstrength]

I've been living by my new phrase "I'm not gonna let this chiari get the best of me or take away my life"

So.... That being said, my husband and I have sex atleast 3-4 times a week! It does kill my head neck and back but it's worth it to me!!

Afterwards I get the bad throbbing HA so I just have to lay there for a good 10 minutes or so! And I can't sleep good afterwards but I never sleep good anyways!

There are days (sex or not) that I just can't do anything where I'm stuck on couch or bed ALL day long but luckily my husband understands! My house stays messy bc dishes hurts my back, laundry hurts my back and arms and well I'm just lazy to but my husband and 3 kids (ages 3, 5, 7) are big helpers!

I guess this all boils down to my opinion (which may not be a good one) is I'm gonna hurt anyways so might as well do things I enjoy (as in sex bc seriously who enjoys housework?) lol

[denverluv]

OH mY GOSH SELMA! You cracked me up I could just imagine tee hee ;)

Lisa- yea you are having the surgery - I didn't get the "whoosh" (LOL) untill about teo weeks before - but I was seriously going downhill fast. Who knows why.

Ah yes - sleep - I have my friend Val for that now - and even still I have to force myself to go to sleep. Whatever. Have finally decided I am going to be tired and have a headache might as well roll with it. Went to the dr a couple days ago and asked her "when will this end - the pain- she said " That's the million dollar question for Chiari patients. Look at it this way - (and she kinda has a potty mouth THIS IS HER WORDS NOT MINE)- Better to have a constant headache than to be paralyzed and pissin on yourself." Yea. True.

[burdzmom]

I LOVE THE RESPONSE THAT IM GETTING!!! i think i hit a nerve and everyone just exploded (no pun intended) at the moment to comment. glad i opened the convo up and that i can talk to other ladies that can relate. the girl bits losing their life....yup happens...then outta the blue, they wanna play catch up. HA's are horrible after :( and today is terrible!! (now that you all know  "i did it" yesterday)
i sob to my hubs often. feeling inadequate that our sex life isnt on fire. like we are living the sexual life of 80 year olds. (my grandparents are in their 80's and watching my "grandpoppy" pinch my "mieko" on her boob......i just about fell over.....hahaha i adore them) We have only been married three years and i worry that it is "suppose" to be more. i guess this is where the stereotype comes into play.  I guess, make it what you want...... thanks for the visual (karma sutra lesson) denverluv.....so funny ;) He is very understanding and compassionate with our circumstances. He knows it causes pain and NEVER EVER pushes the issue!!

i have the WOOSHing feeling sometimes too,in all types of circumstances.....getting up from a bent over position. like, picking up toys off the floor.....this is when the "head on a toothpick" feeling is really bad. feels like im lifting a boulder. but my NS never ever mentioned an issue with CSF flow. They actually emphasized how there is no obstruction and the flow is good.

Ive been having major pins and needles in my thumb and pointer finger on the left hand (my major pain is on the right side of my head) yesterday my hand fell asleep in a relaxed position sitting on the couch. wierd.

as for sleep.....whats that?!?! i had that 48 hr alien head (EEG) done and the only thing it showed was that i wasnt sleeping. id only make it to the 2nd stage of sleep.  NO sh*t! im not sleeping?!?!? really?!?!? 48 hours looking like an alien for them to tell me that.....awesome.  i can NEVER get comfortable. typically fall asleep on my left side since i cant lay on my right without pain and flat on my stomach KILLS my base of the skull/neck area.

all that rambling aside - my head and now neck are killing me today. my poor lil  "bean"....lazy day with mommy......cause mommy is couch surfin'. i doubt she minds, she get the remote :)

LOVE you ladies! Thanks for the "talk"  **wink **wink

[selmaS]

I was told chiarians should not sleep on their stomachs......sides yes, tummy no....lol....

[LisaM46]

Thank you for the "whoosh" warning!  I am having surgery this coming Monday, bright & early, so hopefully I won't have another incident.

Where's Lizzy???  Come on girl, I know you wanna add to this!

Lisa

[selmaS]

LMAO...I hope u all do not say "sorry selma" in the throws of passion....goodness....lol.....

all I will say is yes...major HA's...and pelvic numbness....back pains....so basically....I avoid things that cause pain so no xrated things to say here : (

[denverluv]

First LISA - be careful of that whooshing - that was what happened to me before I had an episode and my body went paralyzed - I mean I couldn't even expand my lungs or anything and I started blacking out - I wasn;t having sex I was just laying on my stomach trying to go to sleep - and when I turned over is when it happened-The doctor said that it was from the CSF and it caused me to have no room and too much CSF in my head and it started shutting down my system - so be careful of that. Not saying that is what is going to happen but I def. know what you mean about the whooshing.
THIS IS GRAPHIC- BUT THE TRUTH!
As far as sex, before my surgery I started to not have any feeling down there, but I told my husband that and we both agreeed that just because I didn't feel anything didn;t mena he didn't so we just kept having sex. After my surgery is when my head would hurt, so we just didn't really have sex, but I would take care of him, and eventually we learned to place pillows in strategic places - or just kept moving them under my head or taking them out from under my head. TMI - legs up is not a good position - it hurts your head and causes too much blood flow to your head, and also kind of bends your neck and that makes your head hurt. Laying side by side is a good position to be in, and also standing up leaning on the dresser.  Always him behind while you are on your hands and knees is good, just dont lean down because then you get too much blood flow to your brain too and that hurts. The best position is both of you sitting up with your legs wrapped around each other - you are in a sitting position, and you have alot of control of how you move your body. This is actually the best no matter what!

Don't be afraid to try different things, and if it starts to hurt, move. If it's the act of having an orgasm that hurts your head, like I said try sitting up so you are not getting a huge rush of blood flow into your brain while you are laying down.

Hope it helps!

[niki3350]

HA occasionally but wish that was just my problem in the nicest possible way!!!  I am experiencing a whole manner of difficulties in the bedroom dept!!!  Some times I just cannot feel anything at all, its like my lady bits are dead, there no sensual feelings, no big O "sorry Selma" and then other times i have feelig but the pain in my back and legs for days after is just awful, I cant sleep after so then get the fatigue for days on end!!!  its really is just one massive vicious circle for me at the moment.

My DH is so understanding but told him yesterday in a flood of tears that I love him dearly but feel so guilty, that he deserves better!!!  He was devastated!!! told me we will get through this.  im 38 and think that a 70 yro has better sex life than me!!!!!!

Have tried ginseng to try and help as heard this was good for libido, can anybody suggest anything......   I want my beautiful life back!!!!!!!

Hugs
Niki x xx

[LisaM46]

In as few words as I can ... when "getting there" & the pain is threatening to overtake the moment - I've had to pull the (mental) "manager's over-ride key" to get PAST the pain to keep what's mine.  Kind of... taking that pain part and "putting it somewhere" outside of you... and still hanging on to the moment.  (??? Make any sense to you??  I roughly relate it to - where you put your brain vs. pain during childbirth in a  little way.... I may get flack for this comment if not taken the right way...)  

The other night, there was a new KWHOOSH WHOOSH WHOOSH sound inside my head that I've never had before (and I don't mean in a good way, Lizzy!!!!)  Kind of overwhelming & scared me, but it did settle down after a bit.  

But, yeah, I agree - you play - you pay (and then some).  Seems the pay is much steeper these days.  I'm pretty worthless the next day.

Lisa

[Brooklynn07]

I have the same problem, but I am not on any pain medications, so this is a problem. It stinks that we cant even do normal things without being in pain.

Can't wait to hear from others!