MaryB

Paula, I did /do not have annies but others will follow up soon with you. I cannot imagine the stress this causes. I would feel the same way. There are many on here with ANNIES that just are watching. I suppose its is a pro and con list that would be made. I personally do not understand why not fix them all but I understand that many folks are walking around with them all their life and never know it. I have a small brain tumor we are watching and I go back and forth all the time about it. I know it may never grow or cause problems or are the problems I had before SAH & stroke due to this little tumor's location. Seems no one ever has the easy answers we are looking for. Good luck, Mary

Hi Lynn and Welcome to BTG, What wise words from you! Glad you are doing ok and have a positive attitude. It certainly makes it easier to have a healthy approach to a tough situation. Maryb

Hi Anna, Sorry you are feeling so blue. I just want to share my son that jsut graduated college & feels that his grandmother is his own angel. Rather odd for a young man of 26 to say but he feels she is always there with him. I hope you can find a way to feel this as well. It sure does not help the pain but it may ease in time to know she is always with you. I had my SAH when he was in college and as a parent I felt a relief in knowing that my sons would be alright- they may be sad and miss me but they would do ok in this world and that made me feel so much better as an ill parent. It also helps them help others that have gone through a tough situation or their loved ones are. I hope you feel your mom on your shoulder whispering to you it will be ok, she is still there Anna Banana. Kind regards, and a big old mom hug. Maryb

Teech, The more I do the more I forget. However I drove to Chicago Monday- about 70 miles from my house all expressway driving. I had a back up driver familiar with the route to Northwestern University Hospital which is in the heart of downtown along the lake. I was really proud I was able to get there and rememeber the streets to turn on etc... being in the city did not freak me out too much. My appt was at 2:30 so I had a cup of coffee before the appt which kicked in nicely and I was able to drive home. Granted the appointment was a happy uplifting one with a great doctor. If it were with a jerk face I may of not been able to drive home. But I was most impressed with my driving. I may or may not attempt it alone or not next time we shall see. But it is a really big deal in my book. When I had seconds of panic I was almost saying SHUT UP out loud to that voice in my head. It was so quick too, kind of funny ---like "mind" don't you even dare spoil this with panic right now! SHUT UP!!!! maryb PS I did have a bit of help when I was trying to get my parking garage ticket inserted into the ATM machine.

LOL, I was going to respond to this again but forgot I already did!:lol: So there is my moment of forgettting.......

First off I am glad you are writing, your son is a lucky to have you as his mother. Your son’s father is lucky you are there as well. I think my husband and family were wonderful and continue to be. I may work at a veterinarian’s office but even so most of my co workers “get it”. I needed quite, sleep and darkness. I still do when I over do it. I did not like to be asked a bunch of questions and still do not really like to chit chat with company. It totally wears me out. I needed sleep lots of it. Water I needed someone to push the water in me. I needed a spokes person to write down things like BP (mine too is still all over the place as it was 9 months before SAH) & track my headaches and how I was feeling. MY husband actually kept a journal while I was in hospital. I was misdiagnosed and ended back in another hospital with a Neuro Unit. I loved my neurosurgeon and GP. I cannot stand my neurologist or the one before him. I think having a therapist at some point ( 1 ½ years after) really helped. Having someone journal would be helpful as I do not do it to this day and life would be so much easier if I did. I only wanted macaroni and cheese to eat or fruit salad. His taste buds may be off a bit? Pain meds can make this worse. My headaches are worse if I do not drink enough water or eat small meals. I also think if he is continuing with a lot of really bad headaches and not eating he needs to call the doctor’s office. I do not think this is a time to give up. We all I think came home with horrible headaches- if a 10 is SAH than I say mine were a 6-7 most days for months. I went to ER 3 times in 3 days – lucky me I kept seeing the same doctor but the 3rd time after I had a weekend stay for the stroke – they called the neurosurgeon and he studied my MRI’s etc and found a bleed in a rare part of my brain. So as foolish as I l felt returning to hospital I am glad I did or I would be so much worse off. If that blood pressure is still up there I would think that is only to add to headaches as it does for me or anyone for that matter. I have had to be on a few meds to try to stablize it. I am still all over the place and working on that one. Good luck and please keep us informed. Maryb

Oh here I am again, I had this done about 4 or 5 years ago. It was not a big deal. It was done prior SAH for my Fibro at the time. They just did stickies and small impluses of electicity was felt. If you do not feel it they would poke you with needles. It did not hurt at all.

Congrats Tony on your 1 year anniversary. I love your outlook and how you have come to manage the situation you are in instead of fighting against it as it only makes matters worse. As well as it does no good to you or anyone else you love. I will tell you after a year I was amazed at the things that started to improve. I was lead to believe 12 months and you are done. But not true at all. Also I can honestly say I like myself better now. I like being forced into being mindful. I am not sunshine and rose’s everyday but if one can get past the anger stage many rewarding things can happen. Having a better attitude certainly helps as well as looking at life different as you was given another chance to change your world. It certainly has made me a much calmer person that can look at the bright side of things. Forcing someone into that cannot be all bad. Kindest Regards, Maryb

Karl, You must print that post and bring it to your dr. I wonder as well if you are on any medication. The anti Seizure medication did not agree with me etc.... I hope you take this seriously and seek your doctor out today. I think we all have similar things going on but it is when we are way over tired. As well as some of the other medications many of us are on. Do you have help at home? Do you have support around you? Do you (do not judge me) have someone helping you with medication (don’t think poorly of me for asking I lost my medication a few weeks back and tried to figure out why I had none etc..... took me several day and phone calls to pharmacy why I was out of a refill I just got recently recall that I had put it somewhere "safe". Are you in the US or another country? I have many selfish thoughts and I could go days without speaking to anyone when I am feeling bad but in the beginning it was always bad if I am recalling that correct. I just did not want to talk to anyone nor could I ask the questions that needed to be asked. I am still that way a bit. I just do not want to be bothered. I found at one family doctor appointment I had printed off something I shared here on BTG when I was at a low point to show my doctor so he knew what I was really feeling on those bad days and it helped. It is survival mode I think. Kindest Regars, mary

I have come to believe over the past few weeks stress is what throws me over the edge. I was normal tired and wiped out Friday after my 9 1/2 hour busy day but on days working with staff that drain me I am a mess by noon. I know it is not their intention to wipe me out but just a difference of how they do or don't react. Or the amount of non important talking they do. I am get to the point and yes and no kind of girl. I do not expect to have to tell people a story about how to wash the floor correctly, or if it is something you cannot handle and you need me to handle it just ask me to dont give me a 45 minute detailed account of the situation. This should not stress me out but I cannot tolerate the useless chatter and nonsence. Often if I am told a story that takes longer than it would to take care of the issue I am very annoyed - although I think I am handling the situations well I find by the end of the day I am wiped out and the only difference would be the crew I am working with. So maybe while I thought I was handling working with "talkers" I am finding this is not so I am truly wiped out by the chatter. I am well aware of this being a "Mary" problem not a boss, work or co worker problem but my problem of how I am affected by the difference in others working habits & personalities. maryb

Once again I am so sorry this has happened. There is no real time frame and we all heal different. That when will I recover is the million dollar question. I was told by my neurosurgeon it would be 3 months - but that 3 months was for the wound itself to heal. I went back to work as a phase back at 5 months or so.There seems to be so little answers but we are all so different and no one knows what to expect. I have to say I was still having things come together after a year. Wish there was a good answer we all ask that same thing. Some recovery 100%, some do not some are ok with disabilities etc. Good luck, you need a sound doctor that will listen and give you good advice. We all have changed doctors more than once! Mary

It starts with a stiff and painful neck. headache memory cannot find words or thoughts fatigue vision issues painful eye sensory overload- mostly noise. I start to hate people:lol: No really, I just need to be alone.

Yes, yes and yes! My neck also warns me I have over done it or am getting sick. It has always been this way for about 20 years? Worse now since NASAH I cannot look up or around as well. My neck is my worse body part as far as pain. Pain in my ncek! LOL No really it is usually stiff and sore daily. MaryB

Hi Gary and Partner!!! I just want to add coming off meds is a slow very slow process that can make matters much worse. I am not a doctor but in my own experience when I either ran out of meds or skipped a few days I ran into big trouble. I personally would have to wean off one at a time and it would take each one about 2 months I think. I cannot imagine doing it any faster. I could not imagine weaning off all at the same time. I asked my Neurologist last week if the cymbalta is masking some of the neuropathy issues as I was on it 2 years prior to SAH, he said no. But my gut says different. I understand we are all at a different place. I had to wean off pain medication about 4 -6 after SAH as I was having rebound headaches from them. Granted I think anyone coming off oxy is needed medical advice on doing it safely. I think I went off Gabepentin slowly and moved right to Cymbalta & I cannot recall how long that all took. Good Luck, I hope things get better. I think it must be hard for a man to be limited at first but you know I am pretty sure all the woman in here are of the same fighter personality! I find it hard to not over do - I like to work hard. But I am finally getting a bit better at pacing???? Your partner is so early in recovery. At 8 ish weeks I stood up and my foot broke. Although I am not very religious (more spiritual) I had to tell myself it was God's way of saying SLOW DOWN. I thought I was so strong and special I could beat this in record time. We cannot rush a head injury - plain and simple. I learn that while recovering I made peace with so much in my life. I am finally at a point that I have no regrets, no remorse etc. I like the new me better and the time I had to BE STILL made me a better happier person and much more thankful for everything and less angry about the situation. I must add at the time of my SAH I was so deeply sad about horrible events and such in my loved ones lives that I recall saying "Please do not put these people through one more thing!” I feel I took the hit in the old brain so save my friends and family from there constant banging in life. I know it sounds silly and cannot be true for things to work out this way but I am glad it was me and not my loved ones. My dad was on disability and was given 6 months to live when I was 14. I look back at his life and what a crappy hand of cards he was given since birth but he was such a happy man, good spirit, laughed loud, and enjoyed the small things in life. He did not pass away until I was 35 years old and a mother. The lessons he taught me were that he was a fighter, he did not look back and feel sorry for himself he just did what he could and moved forward. I had time to really ponder that while I was in recovery and it gave me happiness and some peace. I am a fighter like my dad. Good luck ~ Sorry to babble so much!! Maryb

Welcome to BTG & I am so glad you found this site so soon. I wish you both much luck and hope everything improves very quick. maryb

Yep, and I am not a milk drinker so I started supplements. I get them in legs, feet and hands often while swimming. I also get like a charlie horse or cramping sharp sudden pains in my rib cage on both side and in my back right behind the rib cages. I would call those muscle spasms? Supplements have helped my legs and feet. Maryb

Well done Daff! I am proud of you! It is amazing how something new can really be so hard on our minds. Like adding driving or work. EEErrrrrr you did both! I am loving my 2 days off in the middle of the week together - kind of feels like a weekend with no treatments at work. It is all my own, I can do as I please with an empty house. WHen I return I have a different crew at work as well. I stopped my ritalin for 3-4 days and yesterday I thought WOW why not take it later in the day like noon? I cannot take it when I crash but I had rested yesterday at 11:30-1:00 and thought now was the time to take it. I will try that at work today to see if it matters but I think if everything is lined up with the stars perfectly I can make it a day without it. Stressful situations floor me the most anymore with work and home. Zaps the enegry right out of me. I think it may leave through my right eye! Daff, You are so good at pacing forgot to say that. I was very mindful of my days off and doing things in small sections when it was a bigger project. I know you cannot do that at work. I also realized that the light of the microscope shines into my brain so I am going to avoid reading any slides when I am close to being toast at work. Yes, Mary the microscope light is very similar to the light of the sun that blinds you!! Only took me a few years to connect the dots on that one!! Have a super duper day! maryb

Kris, I would say my pain is always in my neck first after that I feel as if I fell down a flight of stairs or was in a car accident without a seat belt. It is all over body pain from the tips of my toes to the top of my head for 5-7 days. No kidding~ everything hurts. My otherwise pain that I have daily when not knocked out is like I have no oxygen or something in my muscles and I cannot say hold up the sheets to fold them as my arms are too tired. I cannot grip well. I do not understand how anyone can use those retractable dog leashes and hold on to them. I cannot do any repetitive motion without my joints hurting ( bad right shoulder, leg hip, right foot, left knee- yeah I know age and injuries). About once a month I have a couple of days where I feel normal. maryb

Wem, David, Michelle, Dawn and anyone else I have missed, First off I am glad I am not alone but do not wish this on anyone. Boy what a strong group of people with hope we are! This brain Crappola is not for................the weak! I wish I could help you or say something positive but the well is dry at the moment and I am trying hard to save myself from this!! I cannot believe of all the people in this world I for one cannot overcome this ! Really I think I am more special and I am super woman.  I have always found a way to have some sort of quality of life but this has really been a game changer. I have however read much in a CFS website that has journals, information of doing tasks when exhausted and in pain, doctor appointment etc. Just about anything you want to know and more. I find that it is interesting that CFS is so much more ahead in research than any of the brain things we have gone through. I have that website if anyone is interested. I printed off some charts to start keeping track of myself so I have something to hand the doctors. I think for me switching back to Rheumatology is what I may need to do. I swear my neurologist does not even know me or open my freaking chart when I go there. He zooms in on headaches and treatment of that only now. It really annoys me and I have no energy to be annoyed. I know this SAH, stroke and tumor has pushed my CFS and Fibro over the edge and my question is can I climb back up the mountain or not? Is this part of the cycle and cause of Fibro and CFS which apparently seems to have invited you in as guest of “no one in charge land”. I do see such a giant connection, even if none of you believe it!! IS this as good as it gets or and do I need to make some changes in my life or what? I know I need to make changes but how, when and where is where I am at. I read somewhere yesterday that neurologist like to treat problems they can solve not things like dementia etc.. Rather than anything chronic and deadly. Is that not their job??? Is that not what field they went into??? They are so far behind on research it makes me just shake my poor head. I am glad that so much $ was given to study Alzheimer’s and that they are now studying football concussions the past few years. But really is this problem just this far behind the time? I personally find us all fascinating and I think we are all very interesting to study! Please someone study us!! When I was first diagnosed with Fibro it was like this “no one knows what to tell us” 20 years ago and now I see how amazing the Fibro Network Community is and how far they have come. I am just baffled by this lack of brain research- whose job is it to treat us anyway? Keep on Truckin.....maryb

Exactly can you do anything more than you are currently doing without being wiped out. AND do you have as bad of pain as you do fatigue? I am shocked by the level of all over body pain as well as the fatigue. Thanks everyone for your input, I feel less alone with the pain aspect of it. It is bad enough having the fatigue but the pain on top of it has been horrible. AND horrible for such a long pay back period compared by how much I did. It not like I row a boat to China for Pete's Sake! My husband asked if I wanted to go to a Sunday Baseball game and I was like "no", wedding "nope"...cannot risk it. So I shall stay in my little bubble a little longer and see what happens. My neurologist has no answer for this severe pain and fatigue except CFS. And apparently he can only concentrate on fixing my migraines. I agree it does not make any sense when you will be hit with it either you could have a really good week and things are great and it is almost like a cycle. Maybe we are all suffering from really bad PMS ( really not been free of that for 24 years). Thanks everyone, mary

Thanks for the information BC. Maryb

Thanks everyone, does the pain match your fatigue? I get how we all get that wiped out fatigued but does anyone have the pain level as bad as the fatigue? Like your body is really banged up badly? Thanks maryb

Does anyone besides me suffer greatly from extreme fatigue and extreme all over body pain from doing any physical activity or having a long day with much concentration? It usually hits me the next day and it last 5-7 days where I am totally wiped out from it. I am not talking running a marathon but some yard work for a few hours that may be a little more strenuous than we have done in awhile? I also cannot deal with any kind of stress like some of you say you get angry not me, I would rather ignore it if I can and do not complain. ( It took 3 months to get the dishwasher delivered as I would rather not get some $ back than have to make a call the business for the poor service etc.) I was just wondering- of course I am waiting to the last minute to ask as I have a neuro follow up appointment tomorrow morning. Not sure if this is SAH, Tumor, Stroke or Fibro & CFS or all of them combined. Thanks in advance, Maryb

HI Gary! Well, I guess it all depends where you live and what you had done, damage etc. I am in the United States, I was clear after 3 months but only drove in our small town. I think when they say "3 months to heal" is how long a surgery takes to heal. I had to really build up and get comfortable with it. I had some vision lost and it took awhile to get use to that and I knew it would be dumb to get on the highway. I found driving much more exhausting than you would imagine. We took an 8 hour drive last year that I use to do on my own and after 2 hours behind the wheel I had to take a 3 hour nap in back seat. I am just now able to kind of look out the windows a bit while driving and somedays add the radio. Next week will be my first try in the big city (Chicago) and I am a bit worried as my appointment is mid afternoon and I will be leaving in rush hour. Never bother me before i use to do it all the time, I am taking a back up driver Good Luck. mary

Well said Neil P! I am struggling this week but must add that most of us feel we like ourselves more now. The person we have become. I do miss being able to work like a dog all day. But I have accepted that this is where I am and I cannot change what has happened. Changing a mindset is important as well. Good luck. maryb