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Everything posted by Ponigirl

  1. I'm so very sorry for what you are going through. Since I'm in the USA (and have problems understanding things) I don't totally understand the issues you've mentioned. But I can tell you I've heard horror stories of how USA companies have treated their employees after a brain injury. I actually worked for The HUMANE Society of the United States (HSUS) and when I returned to work they put me into a brand new position- one that I had NEVER done before and then they were shocked when I couldn't do it!! I pretty much failed my neurhphysc eval and thats when I decided I could not take the stress that HSUS was putting on me. I left. I pray you get what you want and deserve out of your job.
  2. I too had NASAH and now my life is different. I describe it as before and after. I explain it as my brain just exploded. This is my "new" normal. I would suggest getting a neuro-physc evaluation (sorry lost my ability to spell). It helped me and it was not suggested by y neurosurgeron until I kept complaining about my memory and just not feeling right. This is the BEST sight for ideas, help and support!!! You can ask anything and usually someone here has been through it or has suggestions. Have you been to see your neuro yet? I wish you the best of luck.
  3. Ponigirl

    Holly - My Story

    Holly your story is similar to mine. I was working from home (alone) when the worst headache I've ever had (and I've had plenty) but this one was so different. Sounds were different- almost muttled, colors were not the same. Then within minutes of the headache I started to violently throw up and could not stop. Long story short I was found to have a Non Aneurysm Subarachnoid Hemorrhage. Spent the next 2 weeks in ICU (no memory of any of it at all), then to rehab for a few days. Stayed home for 3 months. Tried to return to work- after a few months of that I realized I could not remember anything that I could before- asked my neurosurgeion about it and THEN he ordered a neuro-physc evaluation. I pretty much failed it terribly. I was told that I was not capable of working and should be on full term disabiltiy. So my life has drasically changed. I do wish you the best.
  4. Hey there Mandie- I'm so sorry to have to meet you under these circumstances. I live in PA- near Gettysburg. I suffered a SAH, I had a bleed that University of MD (lived in MD at that time) never found the source. My bleed was no where near as bad as yours. Like you I had depression. I think mine was partly from realizing what I was no longer capible of doing (HA- like spelling!!!). I'm 2 years out and am still suffering from the depression and that is with medication! We all have different problems and deal with them in our own ways. I do pray you get the help you need to help deal with the depression. Do you go to a support group? Are you seeing anyone that you can mention the depression? You don't need to respond to any of my questions. I will keep you in my thoughts and prayers. Best of luck!!
  5. I had my non aneurysmal subarachnoid hemorrhage just over 2 years ago when I was 49. OK- I need to back a little- when I was 7 years old had eye surgery at Johns Hopkins Wilmer Eye Clinic for lazy eye. On a rare occasion when i would get tired my "lazy" eye would tend to go in towards my nose. My husband was the only one that would notice this because it was not very noticeable. However, even before I got out of ICU several doctors would ask Bob- "has her eye always been like that?" and even still when I go to doctors it is asked. We went to Johns Hopkins Wilmer Eye Clinic after I got out of rehab (they still had my "old" records) and we took my records from University of MD. They did all kinds of test and were sure I should have double vision. They told us that because of the scar tissue from my very first eye surgery that it prevented me from having double vision. How weird is that!!?? Right?? So fast forward 2 years. I recently started having vision problems- nothing like double vision, just very fuzzy, but not all the time. We will be making an appointment at Johns Hopkins Wilmer Eye Clinic as soon as we can. We are in the middle of selling our house and moving out and will not be buying or moving into another house right away. So things will be hectic for the next several months. This will be stressful and I don't handle stress like I used to. I was just wondering if anyone else had an eye/vision issues as a result of SAH or after?? Thanks, Ponigirl
  6. I actually started laughing when you mentioned sneezing. The reason it is so funny to me is because when I had my non aneurysmal subarachnoid hemorrhage I was working from home on my laptop and felt like I was going to sneeze and got up to blow my nose- when I did my brain exploded!! I got very dizzy- couldn't stand up- felt like I was going to pass out- then started throwing up violently!! I knew I was in very bad shape and this was not normal. I didn't have a smartphone back then and I thank God I didn't, I never would have been able to figure out how to make a phone call. I had my husband on speed dial and only had to (flip) open my phone and press 1 and my wonderful hubby answered right away. There were several things that happened that morning that would have made a difference of life and death. Bob was able to get me to our local hospital and an awesome doctor over heard Bob telling the receptionist what happened and he ordered a CT scan immediately. I was sent to ICU for 2 weeks then a short stint at a rehab center. I had just turned 49. This was in Jan. 2013 and I have no memory of Dec. 2012-March 2013. I've lost my ability to do many things I used to be able to do. I'm sure my age is not in my favor. I do pray for all of us with a brain injury. We have a tough road ahead of us. Some of us are lucky to have a good support system, me included. Unlike you- I never thought to look for any kind of help- I wish I had. I didn't find this wonderful group until I was well into my first year. I wish you the very best!!
  7. Sammy- wow, what a story!!! a little similar to mine- except that I had a bleed instead of an anurisim (sorry I can't spell anymore) and I didn't have operations like you- yours sounds much worse. Your little angel was your life saver!! That is awesome. I had several things that happened to me the morning I had mine and any one of them eaisly could have made the difference in life or death. I am just 2 years out and it has been a tough road. I wish you and everyone with a brain injury all the best in the world. prayers to you!!
  8. I totally understand you being upset and worried. When I needed to have my gall bladder removed I was told Johns Hopkins was doing an experimental procedure to remove it laperscoply (sorry for the bad spelling- it is a result of my SAH) and I met the requirements. I was nervous and went for it. Now it is common practice to do it laperscoply. I know this is in no way a comparison to your brain surgery. Is there any way you could email or talk to some of the others that had this surgery? I know that is a long shot- but if you could would that help you? Talking to your family will help you decide. I will pray for you and that you come to the right decision for you.
  9. My sleep is terrible!! I had a hard time getting to sleep- then after I would get to sleep I would wake up every 1 to 2 hours and just toss and turn. My doc added an antidepressant that would help me sleep- even though that is not what it is for- just an added benefit. I have heard/read that sleep is very important to well being and the brain really needs it. I hope you get to check with your doc and he/she can help you. Best of luck
  10. Teechur- Just my opinion but I would definitely go back and ask to see her, not the PA. If you can take any proof that you are abiding by what she/they are asking of you. Maybe receipts for the meds or a log at a gym, I don't know be creative. And just ask her straight out why is she dropping you after 1 year when she said it may take 2 years? One other thing you may want to check is- can you get a copy of your medical file they have on you. The reason I mention this is because in the US some medical places are getting into "portals" that the records go into and then the patient can log in and review stuff, likes meds, appts, and records. When I was reading thru one of mine it had that I was a smoker and drank caffiene on a regular schedule and both couldn't be farther from the truth. So the next time I was in the office I asked them to correct that. So I'm just wondering if there is something in your file that may be incorrect. It may be worth looking into. So sorry to hear about the headaches!! I only suffered from migraines before my brain bleed, and still do- but also have these "other" headaches. I'd rather just have my migraines, I have meds that work for them. These other headaches not much works on them. I am seeing someone for that and we are working it. I wish you the best of luck. Let us know how it works out. Iola- I've heard that it is common to get headaches on "days off" or weekends and they could be from going "off" schedule. Say during the week you get up at 7am have coffee, breakfast and go to work. Then on the weekend you sleep in until 9am and skip breakfast. I've heard to try to always stay on the same sleeping and eating schedule. Worth a try. Wish you the best.
  11. Iola- Wow!!! You have been thru so much! I know that it is worse not knowing- sitting and waiting. I feel for you! I am praying that you will get the good news and soon! It is hard but try to keep your thoughts on something else. You certainly don't have very good family history. My husband, Bob lost his grandfather to lung cancer before I met him. After we were together for a few years he just turned 40 and lost both of his parents to lung cancer, then to make it worse he lost his grandmother all within 2 years and he is/was an only child. So because of his family history he is very good about going to the docs, getting blood work or whatever tests done. He's had skin cancer twice, but they caught it early enough. So please do the same and go to the docs early and often. It does pay off. You want to be there to see your daughter grow up, graduate, get married, have kids and be the amazing mom that you are!! Please keep us up to date on your test results. I will be thinking of you and praying extra!!
  12. Liz- I can't thank you enough for putting the definition in plain english that I could understand very easily!!! Knowing that makes me understand what I had was clearly a NASAH because I asked my nuerologist recently where my bleed was and she confirmed exactly what my neurosurgeon told me- and that was my bleed was all over my brain- not in just one or two areas but the entire brain. I didn't understand it when they told me, until I read your description. Thank you VERY much!!! Kris- I have problems in many areas- from long and short term memory, asphia (speaking problems), getting lost (driving)- so I don't drive by myself anymore, I can't use computers- like I used to, no comprending, I have a really hard time looking at something - like on a piece of paper and then copy it onto another piece of paper (not sure if that is clear), my vision has really been affected, and there is other stuff but this is what I can think of right now. I'm not sure if this makes a difference as far as receovery or what parts of the brain are affected- but the blood that was in my brain area was making my brain swell (or something like that- I'm not really sure) so the doc had to drill a hole in my skull to drain the excess blood out. and there was a lot of it!! I have no memory of my time in ICU or for months before or after my bleed. Thank you for your input, Ponigirl
  13. Sharlua- have you gone to the support group yet? If so how did it go? I found BTG over a year after my brain bleed and I wish I had found it much sooner. Everyone here has been a huge help. I was not emotional right after my bleed, it was not until I returned to work and was transferred out of my position (that I LOVED!!!!) and I was so very stressed about the new position- because I had never done anything like this before and then I would cry over everything. I think the stress at work was a huge contributor! Because I was not depressed until all this stuff at work happened. I did read and find out that it is very common/normal for people with a brain injury to be very emotional. If you have any questions here is the place to ask. I'm so sorry for what you are going through. The first year is very tough- but it will get better. Wishing you the best!!! Ponigirl
  14. ​It is so nice to know that others suffer from dizziness, because I do. At least now I know not to expect it to go away. My balance is pretty bad. I wish the USA had better control over people with a brain injury and their drivers license. When I was released my husband did inquire about me driving and they said we didn't need to report anything to DMV (Department of Motor Vehicles) unless we wanted to!! Same with my brother-in-law and his TBI was caused by a very bad car accident and he was the only vehicle involved and it was never determined why or what caused the accident. He has epilipsy and I would think that could have caused the accident if he started having a seizure while driving. Yet he never had to check in with DMV!!! Jillbb- let us know when you go to the docs to have the chest issue checked out. If it is something like high blood pressure you need to get on medication as soon as you can. High BP is nothing to mess around with and it can be kept under control easily with meds. Best of luck!!
  15. I can't tell everyone here how much you help me!! I really wish I had found BTG 2 years ago. It makes me feel SO much better when I read what someone here writes and it is exactly what I think, feel or have said before. When someone is realeased from the hospital or rehab after a brain injury it would be so helpful to be suggested or told about this site. I know for me when I came home I felt very lost and was not sure what to do. Then when the doc released me with out any information or anything about a NASAH. I am going to look into doing something about this from the hospital I was in. Thank you all SO very much for all your help, support and most of all encouragement!!!
  16. Teechur- wow!!! My eyes stung with tears when I read your post. Yours as with lots of other people "like us" we say the same thing (maybe not the exact words- but it means the same thing). Honestly I have more days that I wish I had not made it. I feel like I am such an inconvience to my husband! He spends his life/retirement taking care of me instead of golfing. Then when he does go golfing he feels guilty and tries to rush back home- in case something happens. He knows how scared I am of being alone. Even though I try so hard to hide that from him. I push him to go golfing and I'm very happy when he does. Then like other people "like us" I HATE when people say how great I look and how good I'm doing and how lucky I am to be alive. But I have learned how to accept it, because I realized that when someone gives me a compliment I certainly don't want to "not accept it" - I think that would just be rude. So I say thank you and I do realize how lucky I am. Bob tells me that is the lucky one because I did make it! And that makes me feel really good. My husband, Bob is truly my hero!! He told me years ago that the only reason the good Lord put him on this earth was to take care of me. I always thought that was so sweet- especially since he is not a religious person- but he knows I am. Today when I told him how much better off he would be if I had not survived my brain bleed, he totally disagreed and let me know that He said he would be lost without me and how much he needs me. And I understand that, because I'd be lost without him!!!! I am SO lucky to have him, his love and support!! I do miss my job, taking my dog to work with me, being around all animal lovers and chatting about pretty much nothing but animals!! How great is that. So now I feel like I don't have a purpose. I can't (shouldn't) do any volunteering until I get my SSDI (disability). I do plan on volunteering with an animal rescue place. I am SO looking forward to that! My new antidepressant seems to be doing OK- I am not feeling worse- so that is a good thing. I am not going to PT for my shoulder- I am doing my own therapy at home. I am researching into taking a class with one of my dogs, either obedience or agility. I've done it before and look forward to doing it again. Anytime I am with my dogs I am in my glory and loving life. I am very lucky that my husband enjoys the pups "almost" as much as I do!! ​Hope everyone is having a great day!
  17. I am curious how many members (patients) had a)]neuropsychologic testing before being discharged from the hospital, after your brain bleed? If you didn't have the test before discharge- did you have one at a later time? If so when and why? ]The reason I am asking is because I didn't have testing before discharge. I didn't have the test until 9 months after my bleed. The only reason I had the test was because after being back to work for 5 months I called my neurosurgeon and was telling him that I was having a very hard time "adjusting". I told him how I couldn't remember, would get lost driving, crying all the time at work (from stress), and that I felt like something was wrong. The test was extensive! I can't remember what was on the test- other than it was hard/stressful. The results totally surprised me, I scored poorly in every. The result was that I am not capable of working and should be on full disability. However, SSDI (Social Security Disability Insurance) has denied me twice!! We have appealed it and will continue to fight. I wonder what others experienced. Thanks for your input.
  18. I am hoping and thinking someone on here (BTG) can answer a question and help me understand. I had a NASAH. What it the difference between non aneurysmal subarachnoid hemorrhage and perimesencephalic hemorrhage I am not good on the computer like I used to be, I cannot search like before. I also have a VERY hard time comprehending. So any help is appreciated. Thanks!
  19. Elizabeth- I just passed my 2 years from NASAH and continue to struggle on many levels. Brain injury is definetly (sorry I can't spell any more!!) "invisible" because we look fine on the outside- our appearance didn't change, but our brains did! For me I tell people that I feel like I have someone elses brain. My memory is very fuzzy. I had mine on 1/15/2013 and had no memory of December- for example - I was in the hospital for 2 weeks, my hubby and I both had bronchitis, Christmas, and New Years and then 2 weeks later I had my bleed- but I have no memory of any of those things. Even the morning I had the bleed- no memory. I was in ICU for 2 weeks- no memory of any of that. OK- sorry for rambling on. Have you thought about taking your hubby to another (new) neurologist?? Don't tell that doc that your hubby is a doctor and bring his records from the hospital, and basically ask for a "second" opinion? Just a thought. Please keep us up to date on how he is doing. I do think about my "BTG family" often and share some of their opinion and stories with my family (not mention names or any personal info). These people have helped me so much! I really wish I had found this site 2 years ago, but I was in another world then. Best of luck!!
  20. Welcome Rob- glad that you found this site- just very sorry that need it! There is lots to learn about brain injuries. Read all you can so you better understand whats to possibly come. Its better to be prepared, hopefully you won't need the info- but if you do you'll have it. Another good thing about being on this site - you can ask all kinds of questions. Pretty much someone here will know the answer, or have experienced it. Glad to have you on board. Take care,
  21. I really appreciate everyone's input/ideas/suggestions. This is very helpful. I was actually expecting these exact responses. Since I am not working I am going to try to do something about it. I want to contact someone at University of MD Hospital in the near ICU. I would like to work with them to come up with some generic booklet on brain injuries. Hopefully it will help others to have a heads up on whats to possibly happen and change in their lives. I need an upbeat and positive project to work on and this will be it. I'm sure it will take me quite some time, but thats ok. Thank you very much!!!
  22. I am very curious about a couple things- this may vary from UK to States or other countries. When I was released from the hospital and rehab I feel like I was given very little if any instructions on what to do now. I went from ICU to "step down" then to rehab. I do not have any memory of any of that or even the weeks/month before I had my SAH. When I was released from Rehab (at Kernan) I was pretty much just told to go home and come back in 2-3 months to see the neurosurgeon; no mention of driving or not driving, etc. Before I saw the neurosurgeon I had to bring an updated CT scan of my brain, he said it was fine. When I saw him he told me I could return to work (no restrictions), he said driving was up to me, and that I did not need to see him any more or make any follow up appts at all. I felt very "lost". I returned to work 3 months after my SAH. I started having more and more memory problems, I had a hard time understanding and comprehending. I was in tears almost everyday (now I've read the emtions are normal after a SAH), I wish I had known that at the time! I called the neurosurgeon and told him all this, he asked me if I had a neurophysc test, I couldn't remember- so he checked my records and said there was not one done- so he scheduled me to have one done. It was very extensive, 8 hours total - they let me take it on one Friday and come back the following Friday to complete, and it was also very expensive $$$$$, lucky we have very good insurance. ​Believe it or not but I felt so much better when I failed it, because I felt like a crazy person. I wish when I was released I was given a "How to live with having SAH for Dummies" Book - or something like that. I noticed that so many people get on line right away after having their SAH/BI but I never thought to do that. I felt like I was floating in a cloud or something. I didn't even find an online support group until at least a year after mine. I just had my 2 year and there are so many things that I am find out now that I wish I had known a long time ago. I would really like to hear what your experience is/was and what your thoughts are on a book for when people get out of the hospital. Thank you!!
  23. Just a thought- I wonder if you could bring an iPod or something like that to play your own music? Maybe call and ask where you are having the MRI if they have any ideas or suggestions. When I've had to had surgery I would ask my doc to give me something before hand and they did and it really helped. I don't like them either, I wish you luck.
  24. Well my haircut turned out great! Love it! I think I am going to make this my "celebration" each year on Jan. 15th. I am about 10 days into my new antidepressant and I can't complain. I know from experience that some meds work for a while and then just stop working for no reason. So I think maybe that is what happened with what I was on before. I think part of my problem was that I broke my shoulder in the early fall (Sept) and was laid up with that. Then when I started to heal and doing PT it was winter (cold and less daylight). I got one of those lights for people that suffer from SADD. My hubby is a HUGE help. He helps me so much by just getting me outside everyday- even if just for a short bit. I am really looking forward to spring and being able to go out and plant flowers. Right now I am focused on my inside plants and Orchids. We will be putting our house on the market in March or April at the latest. We had it on the market last year and had a contract. Settlement date was set and cancelled 3 times!! Very lucky for us we did not put a contract on a house yet. After the third cancellation we found out the guy could not get a loan. We found this out after we had all of our stuff packed up and moved out of the house and into a storage unit. We had given away half of our furniture because we planned on getting mostly all new furniture for our new house. We were actually moving back into the house when I broke my shoulder. We had to buy and borrow furniture to be able to move back in and live here. Our poor dogs don't know if we are coming or going. We had moved everything out before the middle of August because the first settlement date was 8/15. We had all of our stuff in a storage unit and put our travel trailer/camper at a campground in Gettysburg, PA (about an hour away) and we were living at the campground. The dogs love camping but I'm sure they were confused because we had to come back to the house to cut grass and then would go back to the trailer at night to sleep. I felt so bad for them. The beagle, Gus didn't care as long as he was with us. Candy, the Belgian Malinios was more in tune to what was going on and she didn't understand why we kept traveling back and forth so much. So I am really looking forward to spring- we will put the house back on the market- I will be able to be outside!!- I can take the dogs for nice long walks in warmer weather. This support group has helped me more than anything!! It is very comforting to have people that understand. I really appreciate everyone's input and ideas. Thank you so much.
  25. Well I think any of us that have suffered any kind of brain injury can always relate to the date of the injury- no matter how many years. So the 15th, Thursday will be my 2 year rebirth date. In some ways it seems like it was just yesterday, then again it seems like a life time ago. I know I should be grateful to be alive, but I have a hard time with that. I feel like the part of my brain that controls my gratefulness/appreciation/positive moods - just doesn't work any more. I used to be a VERY positive person- but not since the brain bleed. As hard as I try I just can't think positive and be grateful to be here. But I will always continue to try. I wonder if losing my brain, my horse of 25 years, and job all in a few months may have been too much for me. I was not depressed when I first got out of ICU- but after losing my horse and job- the depression set in and has not let up. So as I did last year on Jan. 15th I will get my haircut. I think I am going to make that a yearly thing- just for me. Thinking of all you with a brain injury!!!!
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