Carolynusa

Iola - for heaven's sake - you have been through it. I'm so sorry for this newest thing but you're so strong I know you will be fine. Ride with it and you will come out the other side an even stronger person who can enjoy her family to the fullest. Don't want to take away from your thing but might help to hear: When I started menopause I was a mess. Depression set in and I had to start anti-depressants; I got very sick with some kind of upper respiratory thing; so I went to the doctor (hadn't been in ages). They did pap smear which came back suspicious; doc discovered lump in breast so ordered immediate mammogran. Then my regular doctor called and said they had found a strange thing in my lungs (from cat scan). So..I had all this going at once and was sure it was over for me. My husband and children were devastated. A week or two later my phone started ringing - nothing was the matter with me at all! Nothing! All of the fear and depression and family stress for nothing! But! It was good to have it all checked and I could be at peace until SAH last year. Who coulda known about that? I will also be praying for great results from your test. Keep positive and it won't hurt to do a little singing as Win says. Much love, Carolynusa

Fantastic Teechur! Way to go! Very happy that you seem to feel happier and happier as days go by. Keep it up. I think we are all some kind of miracle just by the fact that we are still here - so let's live like it. Love to all - Many happy congrats to Teechur. Carolynusa

Wow Sharlua - you AND your sister! That's crazy! I'm so sorry for the both of you. Mine was in June 2014 - coil, clips, shunt, etc. so still kind of coming around from it and getting to know myself anew. I'm so glad you found this site. The people here are wonderful and you will find a lot of support and answers here. I hope you have someone with you to help you heal and give you support also. Headaches are very common. I'm still on narcotics for mine but it has eased quite a bit. Emotions are whacky. I will be talking to my husband about tacos and begin to cry!? I'm getting used to it and just kind of roll with it. The most important thing, I think, is that you keep informed through support group or your doctor about anything that scares you. That's how I ended up here. I was scared of physical and emotional things that were happening to me and lucked into this site to find out other people had the same thing - and they are doing fine! You are not alone. Come here any time you have a question or a concern. Take very good care of yourself. Take it slow and easy. Drink water. KNOW you will get better. Take care and let us know how you are doing Carolynusa

Hi Jill. I agree with the above posts. If you are suddenly experiencing multiple dizzy spells and feel tightness in chest I would have a doc check you out. You didn't mention if you are on any medications that might cause those side effects? Please check with your doc as you have done such a great job healing - you want to keep it going! Be well Jill Carolynusa

Welcome Rob - So sorry you had to hunt the site down but glad you found this one. I had a coil and two clipped in june 2014. Was home for a week or two when I got so scared about the feelings in my head. I also got a shunt - forgot to mention that. The best way I could ever describe the feelings was that a herd of ants had moved in under my skin near the shunt. They had marches, pinched and bit me once in a while, tazed me (lol), etc. I found this site and lots of people told me they had the same thing. My doc describes it as nerves healing as well as the incisions themselves. It's been 8 months now and I can safely say the ants have calmed to the point where they just dump buckets of water around the inside of my head. All advice on rest and drinking water is very valid. Take care of yourself. See doc if worried. Keep in touch here. Nice to meet you. Carolynusa

How sad and so very annoying that so much of the medical profession including hospitals are so quick to dismiss our problems once they think "the worst is over" It's not new however. If many of us think back in our lives we can probably come up with at least one person that was "treated" and "released" from medical care and it all blew up a little down the line because there was no proper follow-up. I can think of quite a few because of my age and the fact that I worked for Health Care Insurance for 15 years. I've heard and learned so much. I quit health care insurance because of exactly that type of thing - that, and the fact that it was so sleazy. There was no care for the patients - it was all money. The main thing to me is - and I say this to people all the time - "You have to be your own advocate". If you feel something is wrong or has not been addressed, call them up - or go down there and sit in their waiting rooms until they talk to you. It's YOUR life we are talking about. Nobody has the right to dismiss you or your feelings. Shame on them for not preparing you better when you were dismissed from the hospital. I am not a "support group" kind of person generally speaking but I had so many weird symptoms when I got home. I knew I would feel weird while I was healing but it was still scary - as you know. I found BTG and it set my wrecked mind at ease in most cases. My neuro team was actually quite wonderful and they have spent a lot of time with me - even after coming home. I was so shocked as I have really disliked the hospital/clinic for years because of my history with them in insurance. They charge a lot and seem to harass people about their bills more than any other. But, my God, they are wonderful! I wish you could have had a better experience in that way. My bill ended up (so far) being 1.4 million dollars (sorry about pounds but Ponigirl will get it). They wrote off almost the whole thing. I'm not saying it was perfect, Ponigirl. But...what seemed to have happened to you is absolutely shameful. I would say to "get after them". Ask questions. Take any help you can get. My doctors wrote on my discharge papers that I was not to drive for 6 months and that I would not be able to work for at least 1-2 years. They were specific. Try to get some answers and keep after all of it. If you get a "twinge" look it up online right then or call the doc if you are really scared. Take care or yourself first and foremost. Maybe you can make a lot of notes through research for a perfect "Post SAH for Dummies". It would have helped me for sure! lol Be well. Carolynusa

It sure is. Without some of that humor we would have much less in life. I knew who Robert Burns was but nothing about the lunch so I looked it up. Oh my goodness. Haggis, Neeps and Tatties? No....but I am making tacos tomorrow. lol Have a great lunch tomorrow. Both of you take care.

Subzero - you made me laugh..or, I should say your wife made me laugh. In the hospital as I was off and on coming out of my coma I developed a very simple yet complicated system for defining what seems ridiculous to me: The first time I used it was when a very sweet little nurse told me she had chickens that laid green eggs! (I don't remember this at all) I looked at her and announced "That sounds like horse.... to me!" lol My husband was humiliated but the nurse and I hugged and laughed a few weeks later when I walked to her ward to thank her. That word/system is best used on almost all political things or obviously ridiculous advertising claims. Next thing I remember was that people were always shouting questions at me. It really upset me. One of the questions they used over and over and over again was "Who is the President of the United States?" Remember this is very loud shouting at my poor damaged ears. The first time I think I forgot and had to be told. But after that...I would shout right back "BARACK OBAMA!" Then I started telling them I saw the President out in the hallways. lol I'm better now but, the morning after the State of the Union Address I got up ready to pick a fight. I never do this kind of thing. I found the first article about it online, scrolled down and saw the negative, mean, sometimes nasty and vile comments about him and typed a response: Get off his back you Obama Haters! It may have been stupid but made me very happy. Hug your wife for me. The both of you are great. Carolynusa

hello again - just wanted to mention that the book "Stroke of Insight" was very interesting and is written in a lot of ways from a clinical point of view that your husband might identify with. It goes into detail the difference between a right side stroke and a left side stroke, explains the brain in response to the stroke itself, and offers insight and suggestions as to how to move on and be happy once again. Carolynusa

Hello Iola! The second I started reading about your mountain headache I started to wonder if altitude might have something to do with it. I'm sorry it kind of took some of your ski-happy away...but I'm glad you got to go and "be there"! I have wondered about flying and if the pressure from altitude would affect our heads. I'm bettin it would. Maybe not all of us but some. I'm just so excited that you got to go up to the mountains and enjoy the experience and ambiance of a ski trip. How fun! Having said that let me add, "you'd never catch ME up there!" lol. I have never skied. Don't give up. In time you may be able to go again and not even be reminded you ever had a headache in your life. Rest up. Love, Carolynusa

Boy, Elizabeth, that is a hard one. My first inclination is to say "he must be reigned in". But I can see it is not that simple for either of you. The new relationship that is formed when a spouse has a SAH is complicated I think. Maybe I can give you a little insight coming from the other side. I'm the one that had the sah in the family. I've always been tough, made a lot of the decisions, organized our lives. I was also the one that worked outside the home as my husband retired 10 years ago. So...then....I'm flat on my back in a coma and came out of it not really understanding who I was or what to do with myself. Truthfully, Elizabeth, I often feel that time has rolled back and I am a little girl again who needs help making decisions, etc. It's so odd to have my husband acting as a "carer" that I depend on for guidance and help with daily life. Yet...I also feel that I am tough as I was and should be able to do what I used to do. Sometimes I get mad when Phil tells me I cannot do something I want to or have even begun to do. I'll ask him "why?" and he will explain to me that I had an SAH, almost died..and very might die if I try some foolishness that I want to do. I think I can get it when he does that, and reign myself in. But it is very hard and I often resent him for it when it's not even his fault. Your husband sounds that he is even more certain, in his mind, that he can do whatever he used to - and maybe more! He doesn't want to feel or look "weak" or have others feel that about him. Maybe a great deal of his attitude is pride. You think? Forgive me if some of this has been posted before - my memory "aint" what it used to be...lol. Have you spoken to his doctor about this behavior that seems reckless in light of his illness? Is he seeing a counselor? The trick is to help him understand his behavior without making him feel "less". Maybe he's fighting the new "little boy needs help" self against the other guy who could move mountains. It's a hard place to be. I'm sure I haven't solved any of your problems but I hope my perspective might add something new to the mix that will help you come to a more sedate relationship with your new husband. I wish you only the best. Patience is so hard when faced with something like this. I know it's rough. Continue to seek help from any you feel can resolve these issues..docs, counselors, support groups. Maybe if you keep him involved with enough of that kind of thing he won't have time to build a barn or feed the cows! Take care, Elizabeth, and try to breathe deep and take one step at a time. Love, Carolynusa

Oh John....we have a tv program out here - Storage Wars. It's a reality program about buying abandoned storage units at an auction. Gets pretty crazy. Couple of weeks ago the auctioneer (those people HAVE to be "type a" to be able to blather on like that at such speed) had an SAH. It was very dramatic and showed his wife trying to deal with it, etc etc etc. I was feeling pretty bad for him until I tuned in a couple weeks later and there the guy was at an auction = blablablablablalblalbalblbalblablbalblla - sold! I couldn't believe it and it did leave the impression that the SAH was not much. That's showbiz I guess. One thing I've learned at my age = showbiz "ain't" very much like real life although a lot of people fall for it and think it is. I, myself, was pretty upset when my family didn't turn out to be like "Father Knows Bets" or "Leave it to Beaver"...lol. Thanks for pointing that out. I'll have to see if I can catch it somehow - maybe Youtube Gill and Louise - run over to Keith's for a little tea and DO NOT turn on a soap opera! lol Love you all Carolynusa

Hi Just Mandy! Not glad you had to look for a support site for your sah - but VERY glad you found this one. Uh-oh...cigarette break! lol. My sah was June 3, 2014 which, incidentally, happens to be the day I quit smoking forever...lol. When I came to my senses enough to speak and connive I spent a great deal of time trying to get my husband to sneak me out in a wheelchair to smoke. It didn't happen although he sneaked himself out several times. lol. He has since quit. Just as I signed onto this today I had told my husband I wanted a cigarette right now. lol. Stress takes me there. Seriously...my doctors told me not even to smell the smoke..don't be around second-hand smoke, etc. They were pretty serious about it. I'm sorry about your vision. That must be maddening. Mine went a little worse for wear but I only had a few bouts of double. Maybe yours will just slowly go away as you heal. It's still so early for you. Stamina is another thing I think. I'm still foolish enough to go at it full force on a day I feel well so am not feeling that great for the next three. Don't overdo is probably one of the best pieces of advice almost everybody here would tell you. 2014 = This is about you so I will save my "horrific year of my life" rant for another time. lol. What happened during that year? Why? Was it the moon? Geez! Things will get better for you. Take care of yourself. Don't push yourself. Save that dress for next year's REALLY EXCELLENT Christmas party. You'll look beautiful I'm sure. Much love and wishes for a much better year/great health for you and your family. Carolynusa

Hi Chris! What a way to end 2014, wasn't it? I'm sorry for your pain but very glad you are home and mending while trying to get back to your life as you enjoyed before sah. I love love love art people and am so glad that you're back at that. I will admit to worrying about you're working out however. Please ease back in gently and, as Macca said, maybe it would be great to discuss with your doc. Thanks for speedy recovery wishes and I wish the same for you. Take care...be well...keep in touch. Carolynusa

Oh my gosh Subzero. You two have really been through it. My husband and I think about you daily. Sending positive thoughts your way. I love the way you are writing this story in chunks. I didn't, however, like the way this latest one ended. It just seems like it doesn't stop - probably felt like that for the two of you also. I've been off for a while but I will check back in to read your story. Take care - much love, carolynusa p.s. Win would say to "be well, smile, and do some singing"

Jules - best of luck with everything you do here on out. Glad you feel so much better and feel like you can move on. Stop in and just say "hi" once in a while if you get a chance. Love, Carolynusa

Ponigirl - I can't wait to hear about your haircut! Been looking at mine all day thinking about "going for it". Hope you got it done and hope you love it. Feel good. Carolynusa

Ponigirl! I have been thinking about you for several days. Hadn't seen you in a while and was curious about your haircut and your mindset. Tomorrow's the big day, girly-girl! Haircut day! Actually, I think of you every day as I look at my weird hair and wonder what I'll end up doing with it. I will forever remember January 15th as your haircut day. So proud and happy for you that you have worked through your injury for two years! You may not recognize it in yourself but you sound to me that you are coming along much better than you think. I know EXACTLY what you mean when you talk about depression and not being able to appreciate surviving an sah. I say silly, light-hearted things on here but depression has been a mainstay with me since I was a little girl. Several times since my SAH in June I have wailed and carried on about why I had to survive it. I sometimes don't get the point. I know you understand that. Then I think of my family and carry on. Think about it...what would the world do without Ponigirl?!?!? I would definitely miss you. I know lots of other people would feel the same. I don't know what happened to your horse but I am very sorry about that loss. I know how much that kind of thing can hurt. I'm a cat person. I lost one to cancer about 4 years ago and I think about him all the time. Also sorry about your job loss. I carry on at home about how much I miss my job - I may even cry about it...but then(!) I remember how obnoxious it was to have to set an alarm, get dressed up in some weird getup, drive through town in all kinds of weather in a panic state to be on time, and then work my a.. off until the bell rings....lol. I've decided when my head gets better I will do volunteer work. I have to meet people. It's who I am. So....maybe you should see a doc about your depression? Medication could take care of your sinking feelings. Give yourself time to heal yourself, your grief for your horse and job loss. I'm 61 and, if there is one thing I've learned, time is everything. Have fun tomorrow! Go for excitement! Color your hair green or something absolutely ridiculous. Maybe you can post a picture of yourself here with new "do". Much love Ponigirl. Keep your chin up. One day at a time. Carolynusa

Subzero - I have reread the story of you and your wife's journey. Two things stand out to me: 1) You are a wonderful husband to your wife. Thank God she had you and you have a kind of intuition with her that comes from love. I believe you went into that hospital a half hour early that day because you knew you should. 2) Your wife has had a very big struggle with her health - her whole life. For what reason? None..but fate. Fate brought her to you though and it is probably the best thing that could ever happen to her under her circumstances. I worked with health insurance for years and am aware of the "one day they're great/one day they're horrible" rheumatoid arthritis medications. They do scare me. I have some symptoms of that disease - it runs in my family. Hope the medications are much safer if I ever have as much pain as your wife must have. And...shingles terrify me! Have not had them but know several who have. I can't imagine having that come up on top of everything else. Your wife is a strong person (with your help) to have dealt with all of that and still be able to sit with you and watch a video or read a book. I was in a coma for a month but would occasionally wake long enough to rip out all my iv's and things they had crammed down my throat. lol. Your wife has spunk that's for sure! My family was told I had 20% chance of survival but were by my side for 6-1/2 weeks. I truly believe it made a difference just as your presence made a huge difference for your wife's healing. At any rate please tell her there are positive thoughts flying her way. Keep in touch. Don't give up. So glad you met Winnie as she is a kind of angel in my opinion and has sent you here where you can unload and get loving support. Maybe soon you and your wife can sit together and read a bestseller that is just for fun or watch a popular movie and eat popcorn together. It will happen. I believe it. Take care. Love to your wife. Keep in touch. Win would say to have your wife sing. I believe that works too. Carolynusa

Subzero - I am crying as I type this. You and your wife have gone through hell. I am so so so sorry. It's hard for me to speak more about it right this minute. I'll check back in later. Please take good care and, as Win would say, "be well". Love and hugs, Carolynusa

Hello Nick - welcome to btg. Mine was June 2014 and I was glad to find this site. I did see a few others first but they felt kind of "odd" to me. Not warm or something. What's past is past in my opinion. I'm so sorry about your sah. You're young and certainly didn't need something like that. If you're feeling angry, confused, scared, sad, etc. it might be your brain recovering. You should feel better every day....with time. Try not to let it bring you down. I think the rules for this site are basic...posted on home page somewhere easy to find. I don't see people swearing or fighting back and forth. I think it's just a calm, non-dramatic, helpful place to be. I started it because I was trying to find out what all the weird stuff was that was going on with my head and was relieved to find others had the same symptoms. That kind of thing alone will help you. Just follow the threads. Take care. Let yourself heal. Be good to yourself. Carolynusa

Good morning Nat! Sorry to hear you aren't feeling so great. Really. I just had my sah in June of 2014 so am pretty new to the healing process myself. I have been on a "preventive regimen" of oxycodone since I left the hospital and I truly believe it has tamed my headache to a large extent. I have cut my intake of oxy by half and still seem semi-okay with it. However, I will be fine for a day and the next my head is driving me nuts! I get edgy, depressed, disoriented, frightened all at the same time. To tell you the truth regarding my short term memory problem I mostly feel like it is getting worse! However - from talking to my neuro people I believe all of the above is part of the healing process that your brain must go through. I would suggest making an appointment with your physician as soon as possible to discuss how you are feeling - especially regarding your headache. It's extremely important that you are your own advocate for your health and hound your doctors, if necessary, until you feel like you're on the right track. Just remember...It's your brain. I just saw a picture of mine at a doctor's office. On the right there were coils and clips and the color was slightly browner than left side. This was bruising and healing, etc. Takes a while. Do you live with somebody? Keep somebody around you? I hope so! The people on this site are well-versed in symptoms and I'm sure many have experienced what you are now. DON'T GIVE UP HOPE! See your doctor! Keep in touch here. I know I won't be the only one answering your post. Keep reading. I feel for sure you will feel better than you are feeling right now. Much love and best wishes - Carolynusa

Hey Macca! Aha! I get it now. I'm so glad it is working for you. When I did health insurance I recall that Growth Hormone Therapy was a huge deal as it was so expensive and somewhat experimental at the time. I had to fight and fight for some of my people in order to get that covered. The other reason it was difficult to get approved is that it so often used for something other than Growth problems so insurance companies would become suspicious and try not to pay. Grrrrr (I was a "payer"..lol) I have been feeling pretty good the last couple of days...thanks for the thoughts. Take care and toss us a post now and then. Love, Carolynusa

Good morning Ponigirl - I saw your post regarding disability this morning and think maybe I am the one mentioned in a response about having just been granted ssdi. So then I checked your posts and found this one that I missed somehow. First of all I want to say that you are definitely sounding better than I have seen in the past! I'm so happy about that. Good job for seeing a sykiatrist (lol...jk..it's such a hard word to spell) and trying antidepressants. I'm not a doctor but have a lot of experience with antidepressants for one of my sons and myself. They seem to work differently on each person. I took one for a while that worked great but when they tried it on my son he went whacky. Make sure you take exactly as prescribed and don't suddenly stop taking. Work closely with your doctor. It does take 3 or more weeks for antidepressants to build in your system and actually seem to lift you out of the depression. Please don't give up trying to make yourself feel better. The brain bleed thing is nuts, isn't it? I still don't get it and am daily surprised by the "new" Carolyn. I think we can work on accepting and getting to know our new selves and maybe love ourselves. What do you think? Yeehah on getting a haircut. I haven't done it yet and really really want to. Going very short to match the shaved side. I know it will feel so much better. I also am very upset about not being able to work. I, of course, lost my job too as I suddenly stopped showing up one day in June. It makes me sad when I think about it even though I complained about working for a long time! lol So...SSDI...I probably can't help much with that as our Government system for practically everything seems very nuts to me. I am 61, have worked with health insurance for 15 years or more and ran into a lot of incidences in which some went through and others fought and fought and it might never have gone through. Makes absolutely no sense. You probably would agree with me that there are a LOT of people collecting that money that have no business doing so. Right? When I kind of came to my new senses after a 4 week coma and another 2-1/2 weeks in hospital as a lunatic - lol - my husband told me the hospital had started the process for ssdi for me. I, with my knowledge history of ssdi, was immediately skeptical. I thought they were nuts for even thinking I'd ever get approved for that. I kind of just let it unfold between my husband and a social worker at the hospital. 6 months went by and then I got a letter saying I had to go see a psychiatrist (why?!?!-lol). So I did. He asked me a lot of questions regarding my coma, my balance, my medications, my headache (very bad one) and my memory loss. When I mentioned (not on purpose I swear!) that I have left the stove burners on he stood up, shook my hand, and said I would hear in a few weeks. I still didn't believe it would happen. Last week - Dec. 31st actually, I woke up to my first payment in my account. I don't even know how it happened. I'm glad! My husband gets a small retirement and his SS as he retired early at 62. I have no income. I know how you feel. We have really suffered and it will be quite a while before we even get back to "even". I guess I'm saying Don't give up. Make sure all of your medical records are being reviewed. Make sure SSI understands your current income situation. Sometimes agencies get hung up on "last year's tax return" which would obviously be better than this one will be. Crank as much paperwork at them as possible. Medical records are vital. Since you have a history of problems I think it would be great if you send them your entire medical history. Doctors/hospitals will help you with that. Good luck! Try not to get stressed, angry or depressed. The most important thing is that you begin to feel better and heal. Let your attorney deal with the SSDI. I certainly wish the best and will keep you in my thoughts each day. Here's toasting you a wonderful 2015 and the most beautiful haircut EVER! Love, Carolynusa

Wow! Both of you made such great points. I am so grateful that you, Kris, have made such progress this year. So much progress that you seemed to have stopped in your tracks, recognized it, became grateful for it, and then shared it with BTG. It's fantastic! I also love a couple of things in relation to your post. A) I love gamey type things where I am challenged to stop, think, note, and share what's going on in my head on any subject. Any time someone says to me that they would like to hear from me on a particular subject - HOORAY! As most of you have probably noticed I LOVE to share my thoughts, rant, and write....lol. Macca, I've already mentioned to you that I find you truly amazing in your responses. Perfecto! So glad your short term is improving. Wondering how growth hormone injections help in fatigue. Will look that up. Me, I was just approved for Social Security Disability. What a major hurdle that was! It will save us in relation to food, shelter, etc. It's kind of like early retirement, Macca. I can actually retire on my birthday this year at age 62, but at lesser rate. SSD approval provides me retirement-like benefits but at the rate I would be getting if I work until I am 65. Yee-hah. Health-wise...I don't know. I can say that my head where all of the surgery took place and the shunt site seems to be healing noticeably...finally. My headache is better most of the time. I'm sleeping better thanks to new medication and am having my phenblahblahwhatever! seizure medicine changed to another so happy about that. I read a whole book this week and can actually tell you about it! My hair is growing out. The memory...yikes. I feel it is not as good as immediately after sah but am getting better at pointing at things I'm trying to talk about. lol. All in all, it was a very shaky year but I am grateful to be here with my family and to have met all of you at BTG. Somehow - and I truly think this is because of where my sah happened - my feelings of love, empathy, sympathy, etc. for people is through the roof. I want to help and save everybody that is suffering. It makes me happy to feel like that. I was saved for something and I think that is it. In summary, congrats Kris on your progress and thanks for starting this dialogue! Good luck with your memory and fatigue, Macca. Please continue to share on the site as you are loved. I am better than I was in June and am positive I will be even better next New Year's. Sorry I rave so much. It's been a life-long problem. LOL Love, Carolynusa