Xmartz

Thank you all! You guys are great!!

Thank you so much. The docs are trying some medications. Infortunately they think my bleed came from a rare disorder called PRES which could be caused by SSRIs,(which are most antidepressants), so they have to try other Meds. Also doesn't help that I have a headache 24/7!

Hello friends, I am wondering if anyone else has experienced depression following their SAH?i am 9 months out and suddenly find it difficult just to get through the day. We are financially strapped because of medical bills. And I feel like I have no purpose in the world. I can't work and I can't do much at home. Just finding it hard to have hope in anything right now!i am not the person I used to be; I feel quite dumb most of the time.Everything I think of makes my heart hurt.thanks in advance!

Love this Daffodil! It's like reading from my own brain! Thankyou

Hello friends! I'm afraid I've had a rough couple of weeks. Two weeks ago I went to the ER with an increased headache and sinus/ ear pain and pressure. As it turned out, I had developed a subdural bleed this time.( on the outside of the brain) and much smaller than last time thank God! So I faired much better. Was quite scary though as they took me away in an ambulance to the hospital that originally treated me one and a half hours away; originally admitting me to ICU. I ended up being in the hospital an entire week with a pretty bad headache most of the time. What has been scary since I've been home though, is that my husband has witnessed two of what my doctor thinks are partial seizures where he is speaking to me, but I am not responding, but instead staring and blinking rapidly. I have no memory of these events. I am quite worried though. Also under quite a bit of stress now that all of the bills are coming in! That's no good for head bleeds. This week I have an EEG scheduled and my doc wants me to see a hemetologist to try and figure out why I keep bleeding in my brain... Too young for this!

Hi friends, I've had a heck of a time with fatigue lately after my second surgery(cranioplasty), and I just wanted to make sure, ...I will get my stamina back someday? Correct? I will be able to go on a couple mile hike without feeling so tired, like I used to? Things just move so slowly that I get worried I'll never get back to the old me sometimes. It has been 5 months so maybe that is still early in the recovery phase?thanks ahead of time! Mandie

Hello friends! Last week I had my skull put back together! I really wish the nurse hadn't told me that it would be an "easy" procedure because I was expecting easy and it hurt like hell!! I did not sleep at all the first two nights because of the pain! The pain is just now starting to lessen a little. Although I still have a moderate amount. However , I have a round head again now and hopefully this will get rid of the daily headaches. I'm hoping that this is the first step in getting back towards a normal life ! Thank you all for the never ending support !Mandie

Thank you all for being willing to share your experiences on such s personal matter. You all have so much help to give!

Is having constant anxiety a symptom of post SAH? It seems like I can't relax no matter what I do and that leads to depression. Like I have no control over my own emotions.

From what I have learned from my therapist, you can get a lot more tired from doing mental work than physical work following a brain injury. Give your brain time to rest. Good luck!

I have this fear of being intimate with my husband. Like having sex might give me another aneurysm. I don't know, right now anxiety seems to rule every aspect of my life. Mandie.

I had a chest CT last week and it came back completely normal. No sign of a blood clot whatsoever! It's gone and I can relax a bit now!!

Hi there! I saw my neurosurgeons yesterday and I am now scheduled for surgery on August 24 to replace my bone flap. Evidently after six months in a freezer the bone is not as viable. So I should be able to ditch this helmet soon..yay!!the scary part is what the surgeon said could happen... Seizures, brain bruising or even needing a shunt! Guess they need to tell us every risk! I am looking forward to having it behind me though!

Hello! So I am going to take the train with my husband to see my neurosurgeons today. I'm still hoping to get a surgery date set more sooner than later. Don't know if they'll wait for me to complete a 6 month course of warafin or if they'll just have me stop it to do surgery sooner. I really just want to get my skull put back together so i can get rid of his hot helmet and be able to drive again! Will update tonight!

I just read my docs diagnoses on my most recent paperwork to see it said Acute intraparenchymal hemorrhage. I looked that up to see it meant bleeding within the brain tissue. Is this even worse than SAH? The MRI report also mentioned missing tissue. Maybe they needed to remove brain tissue to get rid of the blood? Anyone else have this diagnosis?

Thank you all for such wonderful support! Just being able to vent to those who have been there helps me. I'm still not sleeping well but I'm gonna talk to my therapist about it tomorrow also. Thanks again!

Iola, No, I don't go to Jefferson. I was taken to the University of Pa hospital by helicopter when my bleed happened. I live in Lancaster, pa. Are you anywhere close by?

I was wondering if anyone went through a period where they were actually afraid to fall asleep for fear that they wouldn't awake? And, if so, what helped? Between my SAH and the following blood clot in my lungs I have a huge fear of dying. Actually more afraid for my children than for myself. It has affected my sleep and I just cut a long weekend at the beach short because of it. I had a few heart palpitations last night so I became anxious and of course started having more.then I started thinking about how I didn't want to get put in a hospital so far away from home, how I didn't want to die there because my kids would never go to the beach again, etc... My thoughts just spiral out of control! By this morning I had talked myself into going home. Of course, I have only been out of the hospital for about 5 or 6 weeks, but I'm wondering if any of you had this issue, and if you had any suggestions to help? I do have an appointment with my therapist coming up and will talk with her about it as well! Thank you ! Mandie

Hello again! Thanks to all who gave me such a warm welcome here. A few days ago I made the trip back to Philadelphia for my 8 week follow up. I was hoping to set a date for the craniotomy and to move forward in this process. Unfortunately, I found out that first need another angiogram, which I am very frightened by. The last one I had was done while I was still in a coma so I don't remember it but I also don't look forwar to it at all. I also found out I need to schedule another dr apt with the neurosurgery team! My brain/ memory issues are so bad that my husband had to follow me around all day like I was a child just to make sure that I didn't forget anything or get lost. I guess that I had my heart set on getting the surgery s cheduked to get my skull put back together and it all just seems like such a long process now! Thanks again for listening! Mandie

The "Letter from your brain" inspired me to write this: Dear family members, I know you had a huge scare, could have lost me and just want to protect me, however, I have a few requests that would help me feel better: Please don't shout" you forgot to turn out the bathroom light AGAIN!" Or "this time you left the butter out of the fridge!"please try not to give me huge sighs or disgruntled noises because I left my cell phone downstairs again and could use your help to get it. I know that my memory is not what it used to be and believe me, I am harder on myself about that then anyone else about that! Pointing out every mistake just makes me feel worse and makes me feel worse about myself . In fact, it makes me feel like a dummy! Please don't keep reiterating how hard this was on you as well. Yes, you had to drive long distance to visit me, sit in traffic, etc. and of course this made you extremely stressed out as well, but, telling me about all that just makes me want to say, "sorry that my stroke inconvenienced you." It makes me feel Like my illness messed up your entire life, and it may have,however, it's not like I planned it out! Please don't continue to ask me what I got accomplished today, which just makes me feel like I should have gotten a list of chores done, even if they are contraindicated with my injury. Please, please don't compare your past surgeries or injuries to mine! you can't compare and no two people have the same recovery even with the same surgery! please don't assume that just because I am sitting in my recliner watching tv that I must be depressed, even tho I may be, but there are certain people I talk to when I get depressed, and I know what to donfor hat. Most of all, please don't tell me how"cute" I look. With my new hair cut. I had my husband shave the half of my head that the doctors did not, so it's 2 inches long on one side and 1/2 inch long on the other. It is also now more gray than ever! I also weigh much more than I would like too so I don't feel "cute" by any means! Thank you all for your constant support, but please remember that my personality is different and I cannot help that! I am moody, I have to express my feelings now instead of holding them back, and none of it is personal! My moods are the same for everyone in a day! Thank you for reading this far. I will do my best to be pleasant if you can do your best to accept that this is the new me and I really have no control over that!

On another note, When this happened my. very. Pushy parents had private conversations with my doctors. Upset me because I did not want the doctors sharing my information with anyone but my husband! Because I took oxycodone before this happened for chronic back issues, my mom convinced herself that I was an addict. When she shared this information with the doctors, one of them mentioned that maybe that contributed to my stroke. Every medical personnel that I have spoken to since could not find any connection between the two. They all said if I took cocaine or meth, sure, that could contribute, but not pain meds. Has anyone ever heard anything like that? i will certainly be filling of a new HIPPA form before my next surgery though!

Can someone tell me where to find the "letter from your brain"? Please? Thanks so much!

By the way, the worst part of the craniotomy right now is wearing a helmet at all times except for when I'm lying down. It's not only not very fashionable but also extremely hot on the summer time

Thank you all for the warm welcome! It feels good to connect with others who understand what I've been thru and am going thru.i have very pushy parents who think I should be pushing myself to do more and more every day! But I also have a large blood clot in my heart and lungs! Frustrating!sending big thank you'd and cyber hugs to you all!!

I was wondering if any of you have had a craniotomy, and, if so, what the surgery was like to put the skull back together again? Just wondering what to expect. Thanks so much! Mandie