jhelms

Susan~ Bravo to you for venting. You all are so much further ahead with this process than I ever was at this point. I thought I was being over dramatic and a big baby. That I was perfectly fine and just going nuts. It has been 4 years and I am just now finding answers. It amazes me every day, how NOT normal I am compared to the me before. On the outside I am 100% the same person, but like you said, connections in my brain are fried! You would think that these doctors would spend more time researching the after effects and recovery. So little is known. Or at least , listen to what you are saying, even if there is nothing they can do. Post it notes are my friend. I make to do list, every day. If I don't, then I am lost and unable to complete a task . My mind bounces around from here to there, and I have to focus on one thing at a time, marking them off as I go. I have even been guilty a time or two of writing a note to remind me of why I am going to a room. I get sick of not remembering. Conversations on some days are harder than some. I will be in the middle of a story and forget what I am saying. Typical things you wouldn't expect of a 34 year old. It does get better with time. It does get better when you realize that it is normal . The crying gets better when you honor that it is part of healing , and it is okay to let it out. The hardest part of it all, explaining all of it to your loved ones. They want so badly for us to be ok, and maybe on the outside we are. How do you get them to understand what you are going through in your head? I will never forget the day my husband finally listened to what I had been telling him all along. I feel like something is broken in my head. Like my brain is misfiring, and not making connections as it should with emotions , decision making, stress....He started searching and found this site. He now understands. Let your family and loved ones look at this site. It will help them understand what you are going through. He is so much better now, in dealing with me .

I am also very distant from my inlaws. They are a very loud bunch ...not knocking but they are Italians, which are known to be loud and very vocal. LOL It blows my nerves up because I am very quiet spoken. I was before , but really am now. Very sensitive to loud talking , even if it is all in fun and lighthearted.

Oh goodness, Yes! I play off of others frustrations big time! there is a tone in my husbands voice, that instantly shatters me and my nerves. I don't really know what it is, but he doesn't see it , and he is not angry or stressed at the time, but it comes across as panic in his voice to me. The gotta gotta gotta do this and that and this and that. And on the days where my kids are super hyper, usually because we have been to see the grandparents and they have filled them full of sugar, it totally wrecks me. I love them to the moon and back and I know they are just kids being kids, but there are days that I can not handle anymore. Those days, I do my best to get outside, or even go somewhere alone , so that I can unwind.

Hi all ~ The reason I asked about chiropractic, is because it was the only thing that stopped my headache. Once I started seeing a good chiropractor, several of the lingering issues , went away. I honestly believe that a little sublaxation goes a long way , in nerve transmission to and from the brain. Plus it helps the spinal fluid, move with ease. I do not know anything about chiropractic over the pond, but here it has been a Godsend. Just some friendly advice, and hope that it will help.

Winb~ waiting? To see a chiropractor. Sometimes I forget that you guys are from all over. Does that have to do with your healthcare having to wait? How did the acupuncture go? Did it help?

Have any of you used chiropractic in your recovery?

Lawson~ Yes it is normal, or it was for me. I would fall asleep at the drop of a hat. No energy and I felt very bad. I had a newborn and a 5 year old at the time of mine. I came out of the hospital, after being there for the first month of my son's life, trying to be super mom, and do all the things like normal. The further out from it you get, the more good days you will have, and the bad days will be farther apart. Don't let the bad days get you down too much because it is part of recovery. There is a lot of peace in knowing that. Just kind of honor the bad days knowing that they will pass, and try not to over do it on the good days. You are still so close in. I am 4 years out from mine and every day it gets better. Listen to your body. The brain heals when it is at rest. So, if you can...rest. I do not know if you have looked at the "two weeks and BAM" thread , but please do. You will see that you are not alone in how you feel. I am just glad that you have found this site right off the bat. It will help more than you can imagine. I went through for 4 years, knowing nothing about the recovery. I thought I was just plain crazy. You are on the right track. Hang in there! ~Jessica

Wem~ Honor those bad days, and go into it with the understanding that ,"this too shall pass." I personally have found that it does help to break the cycle and shorten my down times...emotionally. It is a hard FUNK to shake though, and I totally understand and am understanding more since finding this site. Knowing why, is a major part of the battle for me. Now that i know that I am not the only one or just plane CRAZY or LAZY, I feel a million times better. I hope I can speak for everyone when I say...We got ya! It is that history of being go getters and fighters, that has gotten us ALL this far. Any weaker of a person, would just plain GIVE UP! That is what is going to get us all through this! We will get our "Happy" back.

Thanks for the feed back, guys! Skippy~ I don't think so. They are so common here in the US. But, with that being said, inserting a needle into ones spine, there is a very small margin of error. I wonder if it has anything to do with going past the epidural space and puncturing or injecting the medicine into the wrong space. Also, could it be a bad run of that spinal epidural medicine? I just have a lot of questions, and I have had 4 years to ponder them. I am finally in a group of people who all have SAH or other brain bleed in common. We all have the basic recovery story and side effects, and out of my own curiosity, I wanted to see if anyone shared this part of my story.

My SAH came three days after having a c-section for my second child. In one of my many trips back to the ER, I was told by one of the nurses, that a woman had come through the ER a week prior to me, totally unresponsive, and had had a SAH. She didn't think that she had made it. She also had just had a baby a few day prior. I was wondering if there are any similar stories on here. At the time of mine, Brett Michaels had had a SAH following a surgery he had. He also has received an epidural, and I have heard of a few others that suffered a SAH after an epidural. When I have had any medical procedure since, I have to tell them about my SAH and the history behind it. The nurses always ask if I received an epidural and when I reply yes, they always make a noise of understanding, as if the epidural caused my SAH. Could this be true? It has always been my gut feeling it did. One thing is for sure, I had no signs of any AVM's. It seemed to have happened with no cause or reason, and it cleared with no medical intervention. Any body else experience this?

David~ Actually my husband found this group in his quest to find out, what the hell happened to my wife. LOL And I am so thankful that he cares enough to search for answers when I had given up hope, and gave into just being plane crazy. With the soda bubbles, mine is at the back of my head, where my necks joins the skull. It will feel like little tiny bubbles bursting as they move up into my head. Funny how weather changes bring on auras and headaches. I have never been a migraine getter, but I am now. Dessy~ I am about as far away from the UK as it can get. LOL I am from Alabama in the US, and if you know anything about the US, us southerners have our own language and slang too. I still get you though, and no I do not think you are mad, or nuts, or anything else..LOL I am glad that we found y'all too, David. Truly a blessing.

That is just it Daffodil! To everyone, we are "normal" and "ok" , business as usual. They don't see all of our downs, or know how things can throw us into a tail spin. It is not our fault . Believe me, there are some days that I feel like the worst mother in the world because my kids just being kids, can throw me into a tail spin. There is so much peace that comes to me, knowing that this is common and I am not crazy. Up until this point, I thought I was. I didn't understand the bad days when I am so tired and down, and it spirals into a deep depression. Then it is like a fog clears and I am up and ready to go at it again. My husband didn't understand and I didn't know how to help him. I thought I might by bipolar or skitzo, and just when I was at my witts end, we found this site. Not a moment too soon. LOL I was ready to reserve my padded room in the nut hut. Why do they not tell us what we possibly could expect? Why do they pat us on the back and leave us with nothing? There really isn't a lot out there to find answers either. I have no idea how to explain to my family what I go through. I have tried talking to my Mom some, and she basically tells me that I have to put on my big girl undies and move on. Like I am holding on to what happened to me and letting it rule me. I am not doing that....it is holding on to me. I am trying my hardest to move on and it keeps pulling me back. Thank you all so much for sharing your stories and lending your advice. You have no idea how much it helps. When I do have a bad day, now I know what it is, why it is happening, and can just roll with it. It amazes me how much faster and less severe the bad days are. Does anyone ever still get the soda bubble feeling in the back of their head? Does that ever go away?

woooohoooooooooooo!

Desy~ I think we all needed to hear that. I have felt very guilty because I feel like a wuss complaining, when there are so many that "have it worse". David ~ I have been right where you are. Just give your body time, and it will heal. They say that with any brain trauma, sleeping is the time the brain repairs itself and rewires connections. Here we are fighting against that trying to put on our big girl and big boy undies and cowboy through it , getting back to the grindstone. I honestly think it is what holds us back in a way. I wish there was a way to make time stop and responsibilities to wait while we slept this off like a bad drunk. LOL The love and support form a wonderful spouse goes a long way. I try to keep mine in the loop on how I am feeling and let him know all the time how much he is appreciated, although I do not think there are ever enough words to fully let them know. God it is so nice to talk with people who understand. I do promise you that it gets a little better as time goes on. Set backs happen, but they get further apart and less intense. I am serious when I say, I had no answers or no measure of what is normal in recovery from this. I thought I was just a big baby or going nuts. There is a lot of peace that came for me in knowing I wasn't alone. This is all part of it. That it does get better with time and that it is ok for set backs to tick me off. For the first time in the 4 years, my husband and I took a vacation without the kids. It was just the 2 of us and I had no one to worry about but myself. No one demanding anything from me, or to be responsible for. Although I caved by Wednesday and drove three hours one way to get my babies, those 3 days were what my soul needed .

David~ One thing I have found is that you HAVE to take the time for yourself. You can't always go on the back burner. Mary~ I totally understand the emotion side of things. I always feel like I lost part of me and who I was prior to this. It is like something is broken , but you can't put your finger on it. Stress... I can no longer handle or process stress . It sends my body into a tail spin. Iola... how are you doing? Do you still get the soda bubbles? Those would always scare me so bad. I expected something bad to follow. From everything I read it is normal and harmless, but that far out, everything is a symptom and scary! I hope that you are doing well.

Mary B~ That is a great start ! They say God won't give us more than we can handle. Somedays I wonder where in the world he got the idea that I am that strong, and then it lifts as if He knows I need a break. This year, I named the day I had my SAH to Happy Blown Head gasket Day! Laughter is the only thing that has gotten me through the whole thing. It was my way of comforting my worried family . As long as I was cracking jokes they know I was fine. I told my husband and doctor when we got the diagnosis, "Honey, you always knew I had a screw loose." "Now it has fallen out and I have blown a head gasket!" It was much better than the brain tumor diagnosis we first got. So Happy Blown Head Gasket Day to you Mary B~ lol Hang in there sweet lady! I am 4 years out and that energy does come back, slowly but surely.

Guys~ I know I have thrown a pitty party, but I also can be a ray of sunshine. I am here to tell you both, it does get better. It is just when you do have a set back , it is a huge let down. I think I have come to the point to where I just have to honor that. But I won't give up. I have learned to know when to let things slide. I have also learned when to ask others for help. David , mine was after and epidural for the birth of my son. No AVM's and after a few days, no sign of it or that it ever happened. I also did not require surgery. We are blessed in that sense. I guess we both have very high expectations and do not accept limitations. You probably did like I did, and tried to pop right back up and back to the grindstone. I had no other option. I had a 5 year old in school and a newborn. My husband took off as long as he could, but my family loves in another town. I had to jump right back in there and I did not give myself time to heal, grieve or come to terms with what I had just been through. How is your wife hanging in there? I just know how hard it has been for my husband to watch me go through this. He has been as supportive as he can without fully understanding what all recovery included. Him reading through this site has help us both more and more. They turn you out with no tools of understanding or support.

It is always the out of the blue stuff that gets me. Just when you think you are doing great and you are finally over the mountain, you get kicked back down the back side if it and have to climb it all over again. I totally understand. I had to take BP meds for a while , but was able to come off of them once my Bp regulated. Mine had always been low, so for me, what is normal for most feels high to me. Hang in there. I have to believe that there is a better in this somewhere. May I ask how bad you initial SAH was? Did you have to have surgery? How long did you take off from work to recover?

I don't even know where to start with that. I have trust issues with any doctor. Everything they have tried had made things worse, so I gave up on that route. This site has brought more understanding than anything. I had no idea what was going on and if it was normal. It is hard to find any research or information at all on SAH. One thing I did read was how many marriages fail within 2 years after a SAH. That made me feel hopeful.LOL I'd be lying if there hasn't been hard times , but only because neither of us had a clue as to why I have changed. He actually found this site and looked all through it . He said reading your post, he was ashamed of himself for not seeing how truly strong I have been , and how many parts of recovery, I sped through, just to be there for him and the kids. It has truly been a turning point in our marriage . He has always been supportive , but now there is a deeper understanding for us both. And I can not thank you all enough for sharing information and your journeys.

David~ You are so right. I was dismissed by the top neuro at UAB. He didn't even want to do a follow up. No one told me or my husband what to expect. What was common. We are flying through this by the seat of our pants. You, feel the same way. You need anything, I am here. The way this site is set up, I have a hard time finding things.LOL If, I miss it we will just blame the blonde hair. I do not think they know really anything about it. I also think a lot of our neuros here, have the God complex. It was almost like it was a minor scrape and they were bothered by having to deal with it. Keep your chin up. One thing I see for sure, is that you have to get angry and be a fighter to get through this. Some days, I do shut down and go to bed, but thankfully, my kids won't allow me to do that often. They truly are what keeps me going. I also find, that if I am in the bed, getting mad and making myself get up and do something I enjoy, helps to snap me out of it. It is almost like work to make myself do whatever it is. I just keep telling myself, I want my happy back and this will not stop me from getting it. I don't know if that helps you at all. Hopefully, it does and I do appreciate you so much.

I am so thankful for all the blessings. The PTSD part of this, is the hang up. I will be going along as normal, happy and not a care in the world. All of a sudden, a smell or a sound triggers a response in my brain that I can not control. Adrenaline dumps, heart goes to racing, phantom smells hit, and even phantom pain. My body goes to shaking and the flight response is triggered. I still wake up with nightmares. But the bright side, they are getting fewer and farther in between. I think that is why it bothers me so much. Just when you think you are over it and life is "normal" again...BAM. LOL Having a baby is one of God's most precious blessings in the world. I just hate that with that blessing, there will always be that memory attached to it. I also see it as a blessing that I am still here to celebrate and watch my son grow. I came out of this physically no different, other than the extreme fatigue which has gotten 100% better. I just wish the mental part would knock it off. My personality is the same in many ways, but that has changed a lot too. I find it hard to be in group settings . The longer this goes on, the more I find myself wanting to stay here in my little house. These are things that are just not me, nor have they ever been. I have always been the life of the party, go getter, taking on the world. Everything I have read says that this is normal and part of the after life, after a SAH, or it is common. Does anyone else struggle with any of this? I am at my wits end with it. I can not change the things that happened to me.All I can do is learn how to roll with it, and I am trying. It is just hard when the PTSD side comes in out of the blue and kicks your feet out from under you. I have come through the flames of this fire and now I am ready to completely put it out!

I had my anniversary a few weeks ago of my SAH. 4 years. It really ticks me off that the birth of my son is clouded with the memory of the SAH. I try very hard to ignore it but it is still there. What is even worse, out of the blue I had a PTSD episode last week. I looked at the dates and it was my brain reliving the torture I endured in the hands of an ER Doc and his nurses holding me down and digging in my spine trying to get a spinal tap. I was punctured 10 time unsuccessfully before they sent me to someone who could do it with the help of imaging. And this after the angiogram that I was fully awake for and totally naked and bleeding all over myself fro just having had a baby...telling me I wouldn't feel a thing, and feeling every painful movement, and dye release from start to finish. Beeps now have me like Pavlov's dog, and send me into shakes. Grrrrr... I am angry and bitter and just want it all to go away! I am sick of this having the power to pop in and interrupt my life.

Louise I do not have one. They all dismissed me when I left the hospital. I called as instructed by the hospital for a follow up, and was told there was no need. He didn't want to see me. The first one , ordered all these test in the hospital, and left and went to Africa, hunting. He abandoned me and I was tortured because of it. The good Neuro , didn't want to see me again. What do you do with that?

Daffodil Thank you . No I am in the US . Alabama to be exact. LOL I totally agree about the brain reserves. I swear it is like an electrical system or a car backfiring. A channel is being skipped over in the brain. I guess we have to find new ways to get to the same places, just by taking new roads.

Bagpuss Thank you so much. And yes....everything you have stated, I feel. This go around with it, we had a healthy baby and then just like that, heart beat gone. I would be lying if I said that my faith has not taken a very hard blow. This baby was conceived on Easter Sunday, and was due Christmas Eve. I saw it as God's promise to me that everything was going to be ok, because I really thought I'd never be able to get pregnant again. I am so sorry for your loss and your SAH. Two things that no one will ever understand the pain of, unless they have been there.....but it isn't something you would even wish on your worst enemy. No one should ever have to feel the pain of either. God bless you and thank you from the bottom of my heart.