marycharisa

Teecher, I feel you pain! I am not embracing the "new normal" for myself, either! I am also sick of the headaches, fatigue, NUMBNESS in my head (I hate that one the most). Ranting is so healthy sometimes. We all need to let it out. There are no right answers, or right words. I log on to this site to help me feel less alone, to look for others who have similar experiences to share. Thank you for being so honest.

I have been having a terrible time with neck problems since my SAH last May of 2012. Sometimes I can not even stand to lie on a pillow, the base of my skull, upper neck is ridiculously painful. I also get numbness in my right scalp, ear, and behind my eye. My neuro says it is occipital neuralgia. The pain in my neck was getting to the point where even bumps in the road would hurt while driving. So I had an MRI of the neck, and they found some stuff, lots of osteoarthritis, a syrinx, and bone spurs pressing on the spinal cord. He wants me to follow up with a neurosurgeon, but I am so done with seeing MD's for now. I just want to go to work and live my life. It is weird, I never had these issues before my SAH. Don't quite know what happened to me. I was a very active nurse, and lived a very healthy lifestyle (runner, hiker). I am forcing myself to be up and moving, but it is so hard. I am lucky to be alive, have a job, and a great family. I just wish my health was better.

Hi Caroline and everyone else, I am 4 months now post SAH, and I agree with the lack of follow up and "answers" from the MD's. I went back to work after 7 weeks, and I know I was not ready. I am an ER nurse who puts in 12.5 hour shifts from 3p-3:30am, and between the crazy hours, the emergent nature of my job, the commute and the constant headaches, the stress is getting to me. Most people think that if you look ok, you feel ok, I also hate always feeling crappy, so when asked I say "I am fine". Sometimes every bump in the road hurts the base of my skull when I am driving home. Most weeks I have 3-4 migraines. I was never sick before this SAH. What helps me most is forcing myself to eat well, drink lots of water, and exercise. It is frustrating not to have the stamina I had before, (used to be able to run 12-15 miles), now I am happy running 2-5 miles. I am slower, but at least I am moving. My emotions run deeper, and I am not that upset about turning 51 in a few days! I am just happy for my kids I am alive. I do miss my red wine. (now I just whine) So far I am on my 3rd neurologist, most of the headache drugs have side effects that are as bad as the headaches. I am going to keep looking for answers and attempting to find a doctor that can help me. My hospital had a headache center that I am seriously considering, I am also going to try alternative medicine, because, plain and simple...daily headaches....really suck! I always log on to this website for encouragement, and it helps knowing I am not alone. I seems, the head injury does heal with time, but I really am not the same. Take care, Charisa

thank you for all being to sweet and supportive. I went to my MD and he thinks they are nighttime seizures. Ugh, one more wonderful thing! So he started me on topamax, as I was getting horrific migraines, (which was the reason for my visit). I was crying my eyes out, he has know me for 18 years and I have never lost it like this. He is the 4th MD to recommend Topamax, so I guess I will start it. I just got so freaked out, as my health has been perfect until my SAH in May. I am a nurse and am used to giving, not taking. I am used to always being strong and everyone elses advocate. The bed wetting thing makes me feel like a train wreck. I also am back to work full time in the 2nd busiest ER in the states, and work 3pm to 3:30am. (the fun never ends) I just hope my health can hang on. I have 3 kids as well, and was in school for my Nurse Practitioner, which will have to wait for now.

When I had the SAH, my period left as well. I am 50 so I guess I hit menopause as the same time. I take neurontin as well. This is so upsetting as I am dreaming and wake up instantly, I do not completely wet the bed, just a small "dribble", but it freaks me out! Have an Md appointment tomorrow and feel like a train wreck.

This is very humiliating, but, has anyone else ever had any bed wetting experiences since their SAH? Yikes I feel so embarrassed, but I had the SAH in May, and this has happened 4 times since then. Am going to talk to my Dr about it. I am dreaming and I instantly wake up, but too late. This really bothers me an I am so ashamed....

Mary, I was watching the same show! It was NY Medicine, and the part about the jogger took my breath away, as well! It is so scary how fragile life is.

I agree with all of you. Today is has been 3 months since my NASAH, and I feel better, but still have pressure in my head, nausea, and headaches. Oh, and my neurologist went missing! I have tried to get in to see him since Aug 6th and have left many messages, regarding the head pain and pressure. The office staff is clueless and I cannot believe an MD would only be in 2 times a week, then have 2 vacations, and leave no covering MD! And use an answering machine! I have only seen him one time, and never have pestered him or was a jerk. I cannot figure out what happened, so I found a new neurologist, who seems very nice, but wanted to put me on Pamelor, and I just am afraid of TCA's. So she gave me Robaxin which made the headaches worse! I am also a nurse who is back to work full time in a New York City ER, and am getting upset about the headaches and nausea. It seems like there is no good literature out there about recovery. I keep returning to this site for answers and support, it helps to know I am not alone. Thank you.

Thank you all for you thoughtful replies. I woke up this am and felt like I had a massive hangover. All the pain without any fun! (cannot even imagine a drink yet). I made it until 3pm then had to take fiorcet. The headache and neck pain were around an 8. I wanted to call the MD but did not want to go to the ER so I will see him tomorrow. The neck spasms are so hard to correct, as soon as my neck hits the pillow I feel like someone is putting my neck in a rock hard grip. I am doing neck excercises, heat and cold. Does anyone have any clue what the muscle spasms are from and what to do? Sometimes the pain gets depressing. I just "keep swimming".

Thank you Mary B. I am really loosing it with this pain. I am supposed to be back to work in 2 weeks, I hope I feel better soon. I have 3 kids, the youngest is 5, so I do not rest too much. I also have 13 and 16 year old girls. I am just at the end of my rope. when even lying down is painful.....I may go for a massage soon.

Hi Everyone, I had a SAH on May22nd, it was diffuse but I m blessed to have no severe lasting neuro deficits. I was a very active person, typical type A. I am an Pediatric Emergency Nurse, and just was at a new job for only 2 weeks when this occurred. I spent 2 weeks in the ICU and have been home for almost 1 month. My question is this... my headaches seem to be getting worse some days, with neck pain and muscle spasms. I feel hopeless sometimes especially when the pain gets horrible. If I could just take advil/motrin, but cannot any more. I take neurontin 300mg every night, and fiorcet as needed for headaches. Does anyone else get migraines? Did any one else experience the headaches and neck pains getting worse. I have been sleeping, drinking 3 liters of water a day, and walking. I am at the end of my rope with this pain. I feel so overwhelmed, I cannot even put my head on the pillow as my neck will spasm up. I went to physical therapy,,,but that was a waste of time.

I don't "know" any of you, but I think I love you all! Reading these posts is therapy. What is helping me now: My husband My Children..esp my 16 year old daughter....amazing woman she growing into! My dogs, and walking a little bit farther every day with one of my dogs. Allowing myself to slow down and be social. ( I used to run for miles and miles with my 2 weimaraners, my goal is to be able to handle both of them again, and run a 5k this fall with my crazy male, hopefully that will happen).

Hi Paula, I have no advice as I am in the States, but I can relate. I quit my job of 12 years to start my dream job in Childrens hospital in NYC, after 2 weeks I had a SAH (went to work as I did not want to call out), long story short, I cannot get disability from the new hospital, and my previous employer is giving me the run around for 3 weeks, even though I had 200 hours of sick time and 107 hours of vacation, getting this money is a full time job. It is so frustrating, all the little "prizes" we win from being sick. I understand the guilt. I feel awful becasue physical therapy is going to be now through my husbands insurance, and we have another 1500.00 deductable, in addition to the thousands of dolars my ICU, ER, and transport will cost on my previous insurance. I need to get back to work asap, but I know I cannot rush it as I work in a busy Emergency department, and currently a trip to the market sends me over the edge. I was very happy to find this site, as so many of us feel the same way, and after a horrible health ordeal, it is nice to mend by having feeling validated. I hope we all heal as we can. Charisa

Hi. I just found this site and really can identify with how you feel. I suffered a SAH on May 22nd, and like you was very active, running 35 miles a week, loving 1/2 marathons, 5ks etc. Find the highest mountain...I want to climb it! I turned 50 this year, and this was my present? A SAH? Yuck. I like you and all of us is glad to be alive, thankful for all I have and have always been. I am also so so sick of EVERYONE saying "it could have been so much worse, or be grateful, and blah blah blah..." It is wonderful to hear these little sayings when my head and neck are throbbing, loud noises put me into a panic, and I cry for no reason. Not the way I used to be, I like you want my old life back, the one with no headaches, limitations,brain fuzz, anxiety, weekly paycheck, no medical bills. etc. I have been a pediatric ER nurse for 18 years and would never speak to my patients and their families the way others have spoken to me! I feel you pain and have really had it...to the point of not wanting to even go out anymore, but I know that is not the answer. It is strange the amount of care in the ICU and then....BAM....Nothing! I have always known that any type of brain injury can cause problems with emotions, but there are no referrals let alone acknowledgement given to address psychosocial issues. Sometimes I feel like a complete "Hot Mess", but I know there is a very serious reason for this, but being that there was a SAH, should there not be more support?