Jump to content

Where is the "full" recovery?


Recommended Posts

Hi.. Haven't connected in awhile. Had myself convinced I'm different and my NASAH had no lasting affects on my life. But geez, at 8 months out, I still feel cruddy. I get the headaches - and being a tough nurse - I minimize their effect. Today was especially bad - hence my being especially whiney. I keep reading that these types of bleeds "usually" have no long lasting neurological effects, but I swear the headaches are getting worse as is the depression. And now I've taken to living on chocolate - which can't be good. And I've separated from my husband (we were in marriage counseling before the bleed and when it happened he just sort of disengaged) so the stress is high. I also picked up a cigarette 3 months ago - I think to get back at him - and now I'm re-addicted to smoking.

Please - somebody tell me what to do to help decrease the headaches, the depression, the forgetfullness (I swear, I can't remember a patient note I wrote 3 hours earlier). I'm back at work fulltime and trying to tough it out but I'm ready to throw up my hands. Of course, now being the sole homeowner, I need all the hours I can get. I need an encouraging word. I take a nap everyday during my lunch hour - which seems pathetic. Is there a cue as to when I can start some physical exercise? I'm on 100mg of Amytriptyline (spelled that wrong, I'm sure) and Ativan to sleep. Lyrica for nerve pain. Cymbalta for depression...is this how it's going to be from now on? Pill after pill after pill? I'm grateful that I'm a walkie talkie, but it's all finally getting to me.

How do you cope???

Thanks,

Shellie

Link to comment
Share on other sites

Oh Shellie, You poor dear girl! I was and am still recovering from my NASAH and stroke in 9/11. I am surrprise I am still learning but boy over doing it is a killer to my brain. I work in a small animal veteriarian's office as an assistant and I cannot rememeber anything ever.... some good days some bad. I need to rest almost daily and I take ritalin to stay awake till noon. I usually do nto take second dose as it makes my brain think too much. 8 months out is really early. I phased back at 5-7 months and still can only work 33 1/2 hours a week to maintain my insurance coverage.

I follow a whole food diet and it helps with my fibro and pain levels I cannot eat processed food as it makes me feel worse. I take Cymbalta and elavil. I was taKING cymbalta prior to SAH for fibro and nerve neuropathy ( was stumbling and falling a lot).

I think my best advice is I just started counseling and I am glad i did. I finally needed someone to give me direction. Have you had a neuro physch (SP ) elev? I think that was good for me as well. I just am so much worse as the day wears on. I think you may need to talk to someone about doing it all too soon. I just do not think you can rush into recovery. It is not like there is a time table for it like a broken arm. I am too as we all are how much longer it takes. I thought that the 3 months after my dissection healed it meant I was good to move on with my life.

GoodLuck Mary

Link to comment
Share on other sites

Hi Shellie,

Cannot tell you as it does get better but it's a long haul and you need good backup.

I have my daughter and hubby who are my strength, without them I'd be lost.

It does get better but you think "Yes I am getting over this, I have this licked" then you get a down day.

We had them before SAH (up's and downs) so we get them still.

Cheer up when possible xx

Love

WinB143 xx xx

Link to comment
Share on other sites

Hi Shellie,

I'm probably the wrong one to ask, but they say things do get better. I work full time and can understand the noon naps. I do seem to seek the chocolate high also.

I get by on support from family and friends the good folks here at BTG. I know some have recovered better than others. At 18 months, I have headaches everyday, nausea, fatigue and dizziness.

Therapy may help but I think only someone with experience with brain injuries. I know it helps me to read here that I am not alone in how I feel and others understand. That and a roof are about all I got to hang my hat on now.

Hope you are doing better.

David

Link to comment
Share on other sites

At 8 months, I was still a mess. I am a mess now several days/week. The other days I am fabulous. I need to rest a lot and I too am a product of my conditioning saying, 'That's pathetic'. THAT we have to change. We are not pathetic...just survivors. Many do not survive...so if we have to take a nap or whatever...

I also went to a neuropsychologist for counseling. They always recommend it for testing...I did that as well, and it was a waste of time. The actual counseling was really great with someone who knows about neurological recovery. My counselor told me that only after 2 years do they feel comfortable determining the long term deficits. 2 years and you are only 8months. You need to give your self a break, you're not even half way...and that's what a phD said who's never had the condition. It may take longer. It may never come. I was also told about the complete recovery. For me, medically yes, life no. If you look at the stats it is only a minority that report NO deficits at 18months so I take the 2year thing with a grain of salt. Many do not have a full recovery, but doctors don't know this because they only see you if you need medical attention. At some point, you wont, but you may still be left with a fraction rather than a complete recovery. It is different for each person.

Maybe someone who's recovered fully can post? There are a few that are on here hit or miss. They do exist. They give us all hope!

~Kris

Link to comment
Share on other sites

Is all I can say, Shellie, and if you disagree or feel you cannot then I don't know what to say other than take a break, pick yourself up and try again. I guess I fall into the "fully recovered" category having had a NASAH nearly fifteen months ago and having been back at work full-time plus Christ knows how much unpaid overtime since (high stress environment, public sector cuts, over-conscientious but NOT cruising for another bruising so seriously thinking about pulling plug on job/career and concentrating on what I love -writing, historical research, climbing and travel).

My advice - throw away the chocolates, the anti Ds and the ciggies, get down the gym, out of the city, let others do their share, make time for personal interests, don't bear grudges, roll with the punches and fight for all you are worth. Live life day by day but have some nice things planned to look forward to and some longer term goals. We are all food for worms but let's ensure we are standing and fighting when they come for us. And do the right thing however hard it is. We are the chosen ones (well some of them; others are chosen for other reasons). We have our own missions if we can but find them and while there is no power that is going to save us we can save ourselves and others and if we die trying we can do no better. The world is a bad place at times but if people are good we can help to spiritualise the earth and pass the baton on to our successors while we go on to the next challenge (I like to envisage some sort of celestial appraisal meeting where we get asked for our feedback and what we would like to do for our next assignment - have obviously been in the management game way too long).

What has the above got to do with a NASAH? Precious little probably. I was very fortunate in that my symptoms (headache, tinnitus) were never very bad and two weeks after the NASAH I felt fine. Only remnant of which I am aware is a strange clicking noise sometimes if I turn my head. And I do get tired round 11 pm but I suppose that should be bed-time though it is too early for me so I admit I just have a nap and then get going again round midnight for an hour or two. I am trying to and will stop this however as it is a bad pattern, albeit that I am still so tired that I usually have no problem getting to sleep properly. If there is anything I can attribute a good recovery too it is exercise - when still in hospital I insisted on being allowed out for walks and now do as much as I ever did (subject to the demands of the toad called work) by way of walking, work-outs, climbing (only up to 15,000 ft so far but will go higher) and ski-ing. And I deliberately try not to worry. I have a 90 year old mother whom I have to visit weekly in her care home and it is a right old pain for both of us though thankfully she does not have dementia. I try to get the balance between doing my duty by her (which I do) and not worrying about her when I am leading my life - it is painful and grief will follow when she dies so I am not going to pre-empt it now. I look on what I have to do for her as another project which has to be fitted into the schedule/another karmic debt which I have to pay off.

All a bit of a random ramble to take or leave. But I really hope things do improve both physically and mentally - I'm sure they will. And please do help yourself by stopping doing things that are manifestly harmful. Maybe put some things that are definitely beneficial in their place to provide rewards and incentives. Use your self-knowledge and self-discipline to get results. Some things are hard and unpleasant and still more so if you feel unwell but they don't improve by being left if they possibly can be tackled.

Best wishes

Phinella

PS And just to say I am shortly going to leave this forum for a bit so please don't address a reply directly to me as it may well go unread. Hope all things improve for everyone.

Link to comment
Share on other sites

  • 2 weeks later...

I was afraid to see if anyone replied to my guilt-riddled (the cigs) and whinyness (for sure that's not a word). I'm so glad I finally did. You all have given me hope and guidance. Since I wrote a couple of weeks ago I've continued my regression in recovery. The headaches have continued to get worse - to the point of a visit to the ER. CT shows everything is fine. The depression and fatigue also continue to get worse. But, I have an appointment with a new neurologist. I live in a very small city and was flown by ambulance to Albuquerque, NM when I had the bleed. I can't make that 3 hour drive on my own so I am seeing one of the 3 neurologists in town. Hopefully he can guide me on the meds. I'm a nurse and visited with one of the physicians I work with. He is a little concerned about possible interactions between the cymbalta, lyrica, and amitriptyline. I missed most of this work week d/t headache, head pains, nausea, and intestinal problems. And insomnia - which is a killer. I definitely have to get at least 8 hours of sleep or I really feel it the next day. I am in therapy - I continued to meet with the counselor after my husband dropped out of working on our marriage. She is helpful. I joined an online smoking cessation program - I know those have to go. I will talk with the doc about starting some kind of physical rehab - even if it's just walking. I am weaning off the chocolate too.

I plan to get back on here more often. When I was first recovering, I really enjoyed it. Like I said, I thought I was special and didn't need any support. WRONG. Thanks folks.

Link to comment
Share on other sites

Admin note to all members and a reminder of our forum rules:

My advice - throw away the chocolates, the anti Ds and the ciggies

3. Do not offer medical advice.

Advice of a strictly medical nature should only be given by a medical professional. Whilst it is acceptable to mention any drugs that you take, or your treatment and your experiences of them, they should not be recommended to other users; this also includes herbal remedies, as many have side effects and can interact with prescribed medicines.

Would members please not advise another member to cease taking prescribed medication such as anti-depressants, which could lead to serious consequences. This advice should only be given by a medical professional.

Thank you.

Link to comment
Share on other sites

Well I am glad things are looking a little better as far as you seeking help elsewhere. If I look back in my life how many doctors I saw before someone helped or believed I have fibro it is embarrassing to me but it should be embarrassing to the medical community for not pointing me in the right direction.

I am in therapy as well and although he does not specialize in brain trauma he has helped me with goal setting. My strengths are adapting and finding ways to do things but this fatigue is a kick in the pants. I have been on CYmbalta since 2009 when neuropathy was bad with the fibro and love it but they added Elavil at night and I wean off as I was not seeing a change. I do see a neurologist now every 6 weeks or more? Can’t recall...LOL

Anyway the noise at work does me in I work a full day Monday with no dr in the afternoon and I can drag myself through that day, Wednesday a 7:30 to noon with 2 doctors and a huge staff ( I am always trashed after this ) and Fridays all day with 1 dr and a smaller staff. Less is so much better for me. I cannot stand the loud fast talkers (although I was once one) they wear me out listening to them.

I find that is why I like therapy so much it is the most quite place in the world. AND although my mind wonders off during CD's of meditation it still helps to listen to that message and the soothing voice.

I swim at water aerobics which I love but I tend to have a hard time getting there this winter or the class is cancelled. I am looking forward to the weather getting warmer and walking. I have no real excuse for not exercising but I am just not motivated to do so. I do best in a class. I can come up with many excuses why not but I won’t bore anyone with them! I know exercise is so important but I cannot fit it in with work.

So good luck with your new approach and do not beat yourself up too much as big changes come one step at a time. People quit smoking like 20 times b4 it works and dieting?? Well that is like 100 diets b4 one actually can stick and lose weight for good. I can add finding a good Doctor is in there as well. I have gone through many before I found one that I love. I believe you are working for ME and I am hiring you so you best meet my expectations!!

Maryb

Link to comment
Share on other sites

Oh Sweetie! I thought the same thing. I'm special. Mine isn't bad. It's just a little bleed. What am I whining about?

That was underscored by tons of friends thinking that they were helping. "You're a fighter! You are so strong!" I appreciated it, but it also put pressure on me to "get better now". After all, I've overcome a lot in my life and I always bounce back!

Well this girl tried the bouncing back, and then said "Okay God. Tell me what I'm supposed to do." I went back to work a week after getting out of the hospital as a full time teacher, and went right back to running my small business as a weight loss coach, personal trainer, and running coach. I tried to get right back into fitness, but at the level I was trying I would backslide. Finally my physical therapist said "Your brain will only bounce back so many times before you end up with permanent brain damage". That scared me straight. I saw another doctor who immediately pulled me back out of work. I rested and relaxed. I had people take over my training classes. I cancelled all of my summer classes (that had me teaching 2-3 fitness classes per day).

Your brain bled. You are still dealing with that effect. For me it felt like I got a lot worse before I got better. I needed naps daily, and still, 14 months later I am dealing with excruciating headaches. I understand that I'm still healing and I need to take time off. Unfortunately I'm out of sick leave for the school year so I suffer at work. It is what it is. Some days I go home early and am in bed by 3:00. Other days I feel great and can workout with a client and then go for a five mile run. (Today is a horrible day, but yesterday was a great day where I did a hard core strength routine with a client and then ran 5 miles with two others.) I just try to take it a day at a time.

Sounds like kids are wandering in and lunch is over in one minute. Take care and just let your body heal.

Link to comment
Share on other sites

I want to add everytime I call my neurosugeons office I am so stunned they know who I am right away because I feel what I had was such a small thing compared to what so many other people that neurosurgeons has worked on. I really am quite shocked they even spell my name correctly!!!! I do not even have to spell it when I call!

Link to comment
Share on other sites

  • 2 weeks later...

Hello,

Shaw at 9 months it is still early in recovery. It may not seem like it but it is. You will get better. Glad to see you are trying to rid of some of the bad habits, but do what makes you happy. . I still need my chocolate high occasionally. Its called survival. I am at 19 months and still struggling physically. Brain is doing ok though.

Karen- Thank you for protecting the safety of our members. If you need a real life example, I can give you one. Last December I went off my anti-d's because I thought they weren't helping me. I was fine for a few days but after a week i starting getting brain "zaps". Google it. After two weeks I got very sick and my BP dropped to 79/38. Was very sick and had to go to hospital. I know not smart to go off it but didnt think it'd kill me. It almost did. So it is important and thanks Karen for advising.

David

Link to comment
Share on other sites

Hi shellie,i cant even imagine the stress your living thru,wait a minute i can i simillarily went thru a nasty divorce and live a fast paced life.well see my posts and you will understand.i just want to tell you that i feel great because all i did was sleep witch seems like an issue for you right now but i found that by reading a book from ekart tolley it opened my eyes to the reality of total relaxation.basically if you can stop your self from thinking about everything that is going on in your life and just concentrate on letting go of all of the things you cannot control you will relax and fall asleep.just let go..let your mind go blank...relax the more mental rest you get the better and faster you will start to heal.you can control it dont let your thoughts control you.its not easy but once you start trying it you will find it soothing.find a way to relax soothing music a long bath ect give your self the time you deserve to just relax.i works for me and i feel more amazing as the days pass infact i am now 1 year 2 months from my sub arachniod hemorage with temporary blindness in my right eye and just letting go and living instead of over thinking has made a huge diffrence in my recovery.hope this helps you..Danny p.s. a healthy diet and cardio excersice will greatly ballance your body and rest time.

Link to comment
Share on other sites

I have as well started to really change my OUTLOOK on life. I have become much more posititve ~ I cannot change some of this and this is where I am. I am 19 months post as well as having several other issues I have really changed my thinking. I changed that voice in my head- turned it off and replace an instant phase like " it really annoys me etc....." with something more positive . I recently said I rested and took it easy on my day off instead of saying " I wasted my day off " as well as feeling that way too. Honestly ti shocked me when I said it cuz thatis not how I use to feel. Such a little thing but it is life changing.

I started therapy, I was to make goals. I have already eaten better than 90% of people but I am still working on it. I accept where I am and only worry about myself at work instead of the whole clinic now. I am a hard butt to work with by the way, I am demanding that people have the same work ethic as I do etc...... but you knwo I found out I cannot longer beat that dead horse I can only do what I can do about myself. It has really been a process that cut down on my anger/stress etc at co workers etc....

I treat one of my Vet's as well as one of our Tech's like they BOTH HAD THE BRAIN ISSUES!!!!!!! But you know if does me know good if they cannot move forward through their day so I treat them both as my special ones! I know I cannot explain it well but their lack of pulling it together & prioritizing does not help me so I have to do it and tell them what to do next adn it is workgin much better. It beats having to hit my head against the wall all day wishign they woudl change.

I really meditate poorly but I do sit and be still and listen almost daily as a reminder of what is really important. I do take medications which others here don;t or are against taking for one reason or another but me quitting my job losing my health coverage is not in my best interest either. I have to do what I have to do to make it. :) maryb

Link to comment
Share on other sites

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.

Guest
Reply to this topic...

×   Pasted as rich text.   Restore formatting

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.

 Share

×
×
  • Create New...