goldenwillow

7 years post SAH. I have dull headaches everyday. They get more intense when looking at a screen, when I am under stress and in the evening. I sing like Winn, get outside as much as possible. Even if I cannot nap, I lay down to rest my body. Helps.

Thank you Karen. I very much appreciate what you have created here. I have found nothing like it.

I see, thank you! I already like her, peace sign avatar! I will catch up soon. My Mom came yesterday. Thankfully. I feel weak, tired and really feel like I need to cocoon, retreat, quiet, calm is what I am craving. I also needed a hug from my Mom. Something I have never asked for, her help for me. I learned a lot about my Mom and I when we assisted my Bonus Dad's passing at home last November (kidney failure, declined dialysis). It reunited the bond we naturally have as Mother and Daughter. I am fortunate to have some amazing folks in my "circle" of friends. I am calling them My Champions as we have been studying Camelot around these parts. Love that term. We have a retired MD, a homeopath, Chinese Medicine/Acupuncturist on board. I am grateful for all perspectives as I have always been "that girl" somewhere in the middle. I call it in the grey, interesting enough. I emailed my homeopath just to let her in on what is up. Specifically with regards to the burning bon fire still raging on the top of my head. She called me yesterday and immediately asked if anyone has mentioned anemia. Nope. Instructed me to start taking B12 w/ Methylcobalamin (digests easier for folks like me) and Floradix Iron Supplement. Started last night. She wants me to monitor the burn as I ease this into my body. I am so hopeful. There has been no talk about how to help this besides pain meds, seizure anxiety meds (which I feel worse burning and general crappier feeling) and ice. Let's hope today the bon fire subsides to a nice Amber, then out please! My Husband is starting to accept help is needed. He has been on full throttle, which I believe is learned From my behavior. He is accepting I am slower too. From taking care of our 6 year old while I was in the hospital, house needs, his own needs, his job (he is a lead Chef at another local hospital) to really just accepting and wrapping our heads around what the heck just happened last week. What a ride. Today: Slow morning with my Mom and Son. At Noon I plan to volunteer for a couple hours where I have been doing so. I want to see how that goes. Business as usual. Mom and my Son plan a fun afternoon together doing ???? I assume it's what Grammys and Grandsons do. How fun. While that's happening, my Husband and I meet with our friend, our homeopath later this afternoon.

Thank you for sharing indeed. Both situations are very different,however, I am willing to show only Neuro situations such as your that, when I read, if I get a twinge, I review it further. They also want to do an MRI on my spine, which I wish was done during the head MRI. I asked why they didn't, said they couldn't because it wasn't ordered. Urgh. Moving forward. Thank you.

Sorry... I read here someone asked if I knew Carolyn. Not sure. I am not able to find it now. I see this as a cue to rest now. Can someone direct me to her? Thank you.

Thank you to the moderator (Tina?) for combining my multiple posts into 1. I am finding I am getting confused with where all my posts are. ❤

Post Neuro I am told my Hippocampus is larger on one side than the other, which I saw myself in the MRI yesterday. My Neuro tossed a name around M V Stenosis? She said not to Google it until the EEG. The radiologist whom read my MRI said not to rule it out but not enough to see if it's there. I plan to show her your post. Thank you. Let's keep talking. Have you had your follow up?

This is it. Thank you.

Thank you everyone. We celebrated with ice cream, filing paperwork for insurance and just loving each other. Best day ever. I see this all as a fantastic way to launch into my 40s. The appointment yesterday was overwhelming and informative. I am hopeful. My new Neuro is a young, bright, mother of a 5 year old boy. All that doesn't hurt as I felt a connection, thankfully. She took the time to review, validated my symptoms with compassion (that's a first) and opened a few doors. She asked if I experienced vibration, yes very much indeed. She said few do, medically they are unable to diagnose, but it happens. Isn't that a blanket term for fibromyalgia? BINGO. So glad she seems to get it. Time will tell. Next is an EEG. I asked if it was urgent to schedule, can do so within the week. You see, everything has been on fast forward the past 5 days. Today we rest as a family and decompress. No one is validating the burning on my head, saying only its nerve ending not connecting, which I agree (isn't that the broad term of fibromyalgia?), however, I want to know how to help myself, if I can. I smell like metal! Scares me. I am detoxing with natural methods. Kpaggett - Functional abilities to think and move... I have always been very sensitive to everything - meds, environment, pressure, lunar (The Moon - which I follow keenly).. All you listed. I have significant PTSD from childhood experiences and falls, accidents. I am hightened at the time, not sure if that is due to the hospital experience as a whole. I know how to calm myself from over the years and now have that opportunity to do so at home. Hoping The burn will subside. The past 5 days have been on fast forward. My hope is with finding balance again at home and routine of our lives, again, may hopefully subside this burn. I have been icing since it happened. The nurses thought I was an oddity not accepting pain meds, they didn't help. One nurse even said it reminded her to offer ice first before meds. I took 2 rounds when I got there and was done. I was open to try anything and did. Thank you for the support. I am now told I need a chauffeur for the next 6 months. I am excited to see what I have been missing while driving. I wanted to add.. Everyone involved in this experience seems to have been placed in my life in just the right way. The CAT! Who began this journey. Which by the way, the bite is healing well. The medical team that supported me was fabulous. Names that where significant to me (similar family and friends names) I found comfort with, also with fellow blue eyed folks (I find comfort in the color blue - related to the sea). I made a new friend (1 of my 6 nurses in my 2 day stay) for which I am forever grateful for. We were told we were each others doppledinger before I met her. And in my neck of the woods, if you know what a doppledinger is, your cool in my book. Not many folks know what that is Your still cool if you do not as well Forgive me while I process this information while writing. Usually is my best route to understand. I love writing. I am reviewing the actual notes from my Neuro. She states as follows: "I reccommend obtaining an EEG to investigate possible seizures. Your MRI showed possible medial temporal sclerosis. I will review this with our Neuro-radiologists." Will check in from time to time. I am keeping technology to minimal as it seems to highten the burning sensation. I sincerely appreciate all of you. Andrea

Awesome. I posted just prior to reading your anniversary post and I am grateful. I am finding the blessings, or rather they are finding me and embracing, as I read you have. Further validates my thoughts. Thank you.

Home now, thankfully. I am waking this morning in my element (home/family) and was able to sleep. My hope was with rest, this burning would cease or relax a bit. I find today it is still the same. I decided this morning instead of moving through this in fear (as fear/unknown was prompted in the hospital) to study the element of gadolinium. I found myself laughing this morning. Gadloinium's Periodic Table Atomic symbol is "Gd". I have Graves Disease. Also referred to as "GD". I am to call the Neuro today and see the first available for a follow up ASAP, then an EEG. I plan on the follow up for today and see how I feel. I see this cat I brought Home a couple weeks ago as a blessing. Although a rough experience, I am finding peace today. Today is my 40th birthday! Sunshine and 60 degrees is the forecast today. Fantastic. Thank you everyone. **** WINN I wanted to say.... I rocked out in the hospital to my head phones and silently sang but envisioned myself singing LOUD at home. It worked during those times when the business of the hospital was too much to bare. Thank you.

Thank you.

I have left arm and leg numbness. My leg is like a dead weight. It gets worse by the end of day. I was told it is "Narrowing of the spine". I am not convinced of this. Thank you for posting this. It helps me feel a bit validated.

Hello all, I had an MRI done last night at 6pm due to possible seizures. It is now 9am next day. ​A little background of the week - I have been "checking out" here and there at times for a few minutes at a time, realizing this has been going on for a couple months. Last Friday I woke close to the top of my stairs, sitting after doing laundry. I went to my Dr.'s office, saw his associate as mine was out that day. She talked with my Dr. and I was told I needed counseling. I was bitten by my new (psycho) cat this last Thursday and wound up here in the hospital due to infection. BLAH! OK - MRI The last 10 minutes of the MRI, I was injected via IV a contrast called Prohance aka Gadolinium. As the tech administered, he asked if I had any pain at the injection site. None. In the last few scans that I was instructed took 2 mins each. The last one, I started having burning pain on the top of my head as if there was a fire lit there. When I could not handle it anymore, the scan was over. I am not receiving any answers. The Dr. in charge is to come around in the next hour. All I hear is this is rare, which doesn't surprise me. Just being offered pain meds which I have declined. I do not want to mask what is happening. Any thoughts? Experiences?

Thank you so much. I am sorry to hear of your no information at the time too. Why do you suppose that is? Lack of information? It was diagnosed, so why no info? Million dollar question. It just gets me when I think about it, naturally. Moving forward, never straight my MIL says. It is what it is. Thank you for seconding the laughing and singing. It works. I am so fatigued in the late afternoons, talking is tough but I can sing and not have a hiccup in memory. Music has always been my friend. I get everything done in the wee mornings to avoid those late "I said what?" discussions. I am now laughing at this. I have too. I have grieved long enough, too hard on myself because I didn't know. I thought I was somewhat losing it, also easy to do with Grave's Disease, which affects every part of the body. Scared I disliked Motherhood all awhile loving it. So confusing. For those unfamiliar with Graves. Search "My name is Grave's Disease", most accurate description. Typical searches will scare the you know what outta ya. I wouldn't call myself a perfectionist but I like to get it done right the first time. That has been the challenge. The gift has been re-learning what I have lost through homeschooling our Son. I am grateful for your post. I look forward to creating friendships here. I admit I was scared for awhile to admit this is my reality. Finding peace now, thankfully.