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Two weeks Cured and then BAM


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Hello all,

I think I remembered GG writing a similar thread a while back about having two good weeks and then back to SAH misery. Well, it happened again.

In the beginning of August I had a great two week stretch of 11 out of 14 days. 11 Good days. Little pain, little fatigue. And then it came back again. Out of nowhere, just like the "cure" did. I am back to severe headaches and leg pain and fatigue. I literally CRAWL out of bed to get up to go to work. To get out of my car, I have to pull myself up with the door to have enough strength. I did not think I was cured but was hopeful of progress.

I spent the weekend in bed. Last Thursday and Friday, my co-worker called in sick with a headache. I had to do all the work of two people. Absolutely shattered my body. There have been some incredibly beautiful days last week. 73 and sunny, not a cloud in the sky. And I was in bed. I would have liked to have sat outside or played golf. Golf is not that strenuous. I made the executive decision that my rest and body were more important than being outside. But you know what. It sucked. This not me.

If it were not for my wife, I would give up work and be disabled. Because I AM disabled. I am trying to provide a life for her and I and a future. I could make it on my own.

I started taking Inderal/Propanol for blood pressure. It helped for a while. But I gained like 10 pounds immediately. It's ridiculous. I eat hardly nothing. When I have to take pain meds when the pain gets so bad I could scream, it screws up my breathing so I feel like I'm having a heart attack. So I got that going for me.

I am a fighter and will keep fighting. I know others have it worse than me.I know this will pass and I will improve. But improve to what level??? I know this is just a setback but after setback now #50 I'm a little sick of it. Just a rant and thanks for listening.

Has anyone else had a good stretch only to be kicked in the teeth and had thier legs cut out?

David

Edited by amexdm
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It is always the out of the blue stuff that gets me. Just when you think you are doing great and you are finally over the mountain, you get kicked back down the back side if it and have to climb it all over again. I totally understand. I had to take BP meds for a while , but was able to come off of them once my Bp regulated. Mine had always been low, so for me, what is normal for most feels high to me. Hang in there. I have to believe that there is a better in this somewhere.

May I ask how bad you initial SAH was? Did you have to have surgery? How long did you take off from work to recover?

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I have lived on that roller coaster for over 20 years with the fibro. AND I always think I am cured when I have a good day! LOL, silly me always falling for it.

I had 7 great days a few weeks ago, now I am having to push myself a bit again. I do not think I have had 7 good days in 20 years mind you! I seem to be a good combo of meds right now but like today I spent 1 1/2 hours in dentist chair getting a crown so I know that will set me back. Even being prepared by taking pillows, ice packs and a muscle relaxer before going. I know this will set me back. The drills and the noise - forgot about those things!! If I could stand those I would of sanded some of my projects at home!

Yes, set backs are a part of it but I feel I have one step forward, 2 back 3 forward, 1 back, so slowly I am gaining. Not enough to do yard work ( well it is like 100 out today) but I am still moving forward. After work Saturday which was an awful day I stayed on couch and watched 9 hours of NCIS. Sunday not much better. Monday went to work at noon till 5:00 - bad day. I am doing more at home than I have since SAH. It is so weird and backwards to have to learn a routine again. I had not notice how much my life revolved around work.

A few weeks ago I went to a birthday party, I have done a few other outings that I normally could not of done or had the energy to do. I painted the foyer and it was like brain surgery picking out colors and getting prepared to paint. All of it was a lot of thinking and nothing routine or automatic for me like work is.

We were to have work reviews yesterday but boss is out sick. I told her last week in surgery that although I am doing more at home I just cannot add more hours to my schedule - she said she "knew that -as when I am tired I have no filter". Hum???? There were 2 of my co workers in there and they spoke up and said that I am the most productive person that we have. But yesterday I felt like the stupiest person we had working there. We have a meeting on special pet food today and I was like "Nope, not coming in on my day off for that as I am not going to waste my brain cells learning something I can look up if i need to know as it is going to be gone before I got back into my car.

Maryb

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Hello:

Well I am thankful to have had two good weeks but thats all I get?

JH- I had a SAH with no known cause. No surgery. Off work for two months. Came back way to soon and have been climbing the uphill mountain ever since.

You are so right that it's the out of the blue stuff that knocks me out. Such as my co-worker missing two days. These things we cant predict. But there always be something.

I cannot cook a meal after a work day. I can barely do laundry. Am I asking too much?

Thanks.

David

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I will be 2 years on Monday, NASAH- no known cause. Just now able to cook after work somedays. And on a good day do something around house. I cannot however on a bad work day. A few weeks ago I was just about begging for a good day - willing to lose my right arm for one or two days a month and then I had 7 in a row. I think THAT is a sign of getting better. May never be like it was prior but think it is a start of some added good days.

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Guys~ I know I have thrown a pitty party, but I also can be a ray of sunshine. I am here to tell you both, it does get better. It is just when you do have a set back , it is a huge let down. I think I have come to the point to where I just have to honor that. But I won't give up. I have learned to know when to let things slide. I have also learned when to ask others for help.

David , mine was after and epidural for the birth of my son. No AVM's and after a few days, no sign of it or that it ever happened. I also did not require surgery. We are blessed in that sense. I guess we both have very high expectations and do not accept limitations. You probably did like I did, and tried to pop right back up and back to the grindstone.

I had no other option. I had a 5 year old in school and a newborn. My husband took off as long as he could, but my family loves in another town. I had to jump right back in there and I did not give myself time to heal, grieve or come to terms with what I had just been through.

How is your wife hanging in there? I just know how hard it has been for my husband to watch me go through this. He has been as supportive as he can without fully understanding what all recovery included. Him reading through this site has help us both more and more. They turn you out with no tools of understanding or support.

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Mary B~ That is a great start ! They say God won't give us more than we can handle. Somedays I wonder where in the world he got the idea that I am that strong, and then it lifts as if He knows I need a break. This year, I named the day I had my SAH to Happy Blown Head gasket Day! Laughter is the only thing that has gotten me through the whole thing. It was my way of comforting my worried family . As long as I was cracking jokes they know I was fine.

I told my husband and doctor when we got the diagnosis, "Honey, you always knew I had a screw loose." "Now it has fallen out and I have blown a head gasket!" It was much better than the brain tumor diagnosis we first got.

So Happy Blown Head Gasket Day to you Mary B~ lol Hang in there sweet lady! I am 4 years out and that energy does come back, slowly but surely.

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Well sir what I picked up on in your post was the positives, small, but positive all the same, you can and will fight it all the way, and as my neuro surgeon said to me when I said "I shouldn't moan there's others worse than me" he replied "no, there is no one worse than you, you worry about yourself and how you can get better".

Made me feel a bit better as I thought I was just being a nusience.

I like you am just fed up with it all just tired of the whole thing, could honestly curl up in a corner go asleep and never wake up agian I'm that tired.

Keep the head up, keep moving and eventually it will be all forward.

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Hello,

Well Jess I dont think you threw a pity party, although I might have. And I appreciate your support. Trust me i am the most positive person in the world. But you hit the nail on the head that our expectations are too high. Although i was told i would make a "complete" recovery and would be "fine" in a month. My expectations are now lowered of course due to reality. But at setback number 50, how much reslieincy does one have?

Good question, my wife has been super supportive and does everything for me as far as cooking, cleaning, house stuff. I have severe headaches still so she sees me in terrible pain. She has had her moments also but I cant blame her.

But if I am not well enough to enjoy two hours of golf on a sunny day then it makes me wonder.

Mary and I are at two years and similar places.

All being said, hopefully having these past good days are a sign of improvment right. It just that we want it sooner than it has come.

David

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Desy~ I think we all needed to hear that. I have felt very guilty because I feel like a wuss complaining, when there are so many that "have it worse".

David ~ I have been right where you are. Just give your body time, and it will heal. They say that with any brain trauma, sleeping is the time the brain repairs itself and rewires connections. Here we are fighting against that trying to put on our big girl and big boy undies and cowboy through it , getting back to the grindstone. I honestly think it is what holds us back in a way. I wish there was a way to make time stop and responsibilities to wait while we slept this off like a bad drunk. LOL

The love and support form a wonderful spouse goes a long way. I try to keep mine in the loop on how I am feeling and let him know all the time how much he is appreciated, although I do not think there are ever enough words to fully let them know. God it is so nice to talk with people who understand.

I do promise you that it gets a little better as time goes on. Set backs happen, but they get further apart and less intense. I am serious when I say, I had no answers or no measure of what is normal in recovery from this. I thought I was just a big baby or going nuts. There is a lot of peace that came for me in knowing I wasn't alone. This is all part of it. That it does get better with time and that it is ok for set backs to tick me off.

For the first time in the 4 years, my husband and I took a vacation without the kids. It was just the 2 of us and I had no one to worry about but myself. No one demanding anything from me, or to be responsible for. Although I caved by Wednesday and drove three hours one way to get my babies, those 3 days were what my soul needed .

Edited by Tina
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Totally get this thread. It's how my life seems to twist and turn over the last months.

I can have moments , days even, when I may appear to others that I am close to the pre pop Daffodil. Maybe it's a combination of suitable weather patterns coming together to make perfect climatic conditions, maybe it's my unwittingly having settled into a pace that works for that moment in time. Either way its nice whilst it lasts, im grateful for the opportunity of those moments.

My problem , and sounds like I'm Not alone, is that this lulls me into a reassurance that I'm lots better, and I 'boom' which is swiftly followed by a kick up the bum by a 'bust'.

Take yesterday. I didn't stop. I should have but I didn't put the natural breakS in. Then my daughter had pre bed meltdown which meant the adrenaline had a field day with me late in the day. Floored! In bed by 9. Up in pain by 11. Creeping head pain, trickling sensations down neck, I felt the fingers of the fear and worry start to grip me and finally managed to get a restless nights sleep and woke looking about eighty today:lol:

today I will listen to my brain. I will keep hoping my improvements will continue but I also know I am blessed to have come this far. I admit to being afraid still at times that it'll happen again , but that worry won't change anything will it?

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Ahh Daffs

When I get raised voices around me I go into my escape mode which is the following :~

"Al, get me out of here quick" or if I am indoors it's this:~ "Laters All I need a rest" and lay on the bed.

I still look 80 plus Daffs but head doesn't hurt as much lol

Keep bright

Love

WinB143 xx xx

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That is just it Daffodil! To everyone, we are "normal" and "ok" , business as usual. They don't see all of our downs, or know how things can throw us into a tail spin. It is not our fault . Believe me, there are some days that I feel like the worst mother in the world because my kids just being kids, can throw me into a tail spin.

There is so much peace that comes to me, knowing that this is common and I am not crazy. Up until this point, I thought I was. I didn't understand the bad days when I am so tired and down, and it spirals into a deep depression. Then it is like a fog clears and I am up and ready to go at it again.

My husband didn't understand and I didn't know how to help him. I thought I might by bipolar or skitzo, and just when I was at my witts end, we found this site. Not a moment too soon. LOL I was ready to reserve my padded room in the nut hut.

Why do they not tell us what we possibly could expect? Why do they pat us on the back and leave us with nothing? There really isn't a lot out there to find answers either. I have no idea how to explain to my family what I go through. I have tried talking to my Mom some, and she basically tells me that I have to put on my big girl undies and move on.

Like I am holding on to what happened to me and letting it rule me. I am not doing that....it is holding on to me. I am trying my hardest to move on and it keeps pulling me back.

Thank you all so much for sharing your stories and lending your advice. You have no idea how much it helps. When I do have a bad day, now I know what it is, why it is happening, and can just roll with it. It amazes me how much faster and less severe the bad days are.

Does anyone ever still get the soda bubble feeling in the back of their head? Does that ever go away?

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Hello missy andddd yessssssss I get the bubbles in my head feeling and really bad when I move my head up and down and side to side, I also have the feeling of fluid moving about in my head and according to the doctors its a less know side effect of SAH but harmless.

Mine started about two months after my SAH, I found out about it after searching online for 'fluid/water/bubbles feeling in head after SAH' can't remember what web site but its out there in cyber space somewhere lol

Good luck and would you be a mint aero, smooth and velvety on the outside and cool on the inside or an orange aero, smooth and velvety on the outside and zesty on the inside lol

If your not from the uk you probably just think I'm mad which I am, see ya!!!

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Hello all:

A common thread lol. I feel and look eighty too. Bags under my eyes have bags. I get better looking as the day goes on though.

I'm sure glad you found us Jessica. Did you just find us recently?

Daff-Knew you would chime in. Sounds if you are on the boom and bust train like some of us. I don't feel so alone now. I wouldnt even mention it normally but this was a huge BAM for me this week, more severe than others. I know those adrenaline rushes just knock us out though. BUT, your brochure says we will have normal life expectancy so that is a big positive. We just have to get better now.

Oops Sandi popped in. Yes, the only good thing Sandy Is I've learned to not overdo it on my "good" days!

JH- not sure what you mean by soda bubbles. I get tinglining in my brain. Usually on the top of my head.

To give you an example of my wonderful neuro, I told her that I had tiningling in my brain. She wrote down tingling in the SCALP and moved on. I'm not talkin bout dandruff Doc, I said tingling in my BRAIN. It is supposed to be normal though yay, I get it when tired, which lately is every day.

David

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David~ Actually my husband found this group in his quest to find out, what the hell happened to my wife. LOL And I am so thankful that he cares enough to search for answers when I had given up hope, and gave into just being plane crazy.

With the soda bubbles, mine is at the back of my head, where my necks joins the skull. It will feel like little tiny bubbles bursting as they move up into my head. Funny how weather changes bring on auras and headaches. I have never been a migraine getter, but I am now.

Dessy~ I am about as far away from the UK as it can get. LOL I am from Alabama in the US, and if you know anything about the US, us southerners have our own language and slang too. I still get you though, and no I do not think you are mad, or nuts, or anything else..LOL

I am glad that we found y'all too, David. Truly a blessing.

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Hi David & All,

Can't resist joining this thread - it has a lot of similarities to my 'Fatigue Crash Barrier' thread.

The annoying thing is, we all recognise the cause of the crash, and can sometimes see it easier in others, but it is so difficult to stay rational and positive when you have been knocked to the floor for the umpteenth time! Makes me feel like a child who has had their favorite toy taken away from them, with no explanation!

I would say most, if not all of us, are tough cookies who have a history of pushing ourselves hard. So finding the right balance and learning to take our foot off the 'gas' is an alien concept to us, making it even more difficult for us to adapt to this way of life.

In the early months of recovery my motivation levels were extremely low, so I did not really miss doing some of the things I used to enjoy. Now, my motivation levels are re-surfacing and I am starting to really miss bigger chunks of the old me.

I have learnt through bitter experience though that if I let my frustrations and emotions spill over, I go into a downward spiral of fatigue=anxiety=depression=deeper fatigue and then recovery takes even longer.

No-one said it would be easy, but then no-one said it would be this difficult.

The one thing that keeps me going is the knowledge that I am not alone on this journey.

Take care,

Wem

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Wem~

Honor those bad days, and go into it with the understanding that ,"this too shall pass." I personally have found that it does help to break the cycle and shorten my down times...emotionally. It is a hard FUNK to shake though, and I totally understand and am understanding more since finding this site. Knowing why, is a major part of the battle for me.

Now that i know that I am not the only one or just plane CRAZY or LAZY, I feel a million times better. I hope I can speak for everyone when I say...We got ya!

It is that history of being go getters and fighters, that has gotten us ALL this far. Any weaker of a person, would just plain GIVE UP! That is what is going to get us all through this! We will get our "Happy" back.

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I think there is something in the whole 'expectations' thing. Last week, I had the week off. We didn't go anywhere, just stayed at home. When I have time off, I always have these weird and wonderful ideas that if I normally work an 8.5 hour day, then losing work from the equation means I can get loads done. Er, no. When I take work out of the equation I flop big time. I actually have less energy than I have when I get home from a day at work.

Perhaps if I didn't expect anything I'd get more? I am so tired of feeling tired. I know that it's better than it used to be and no doubt that means it will continue to improve. I want to stay positive but some days it's so hard. When I get out of bed on a morning, it takes about 30 minutes before I start to feel remotely awake. I often feel grumpy and fed up which makes me feel more fed up as I get bored of myself and I worry about the effect this will have on my partner. Where he gets his patience from, I have no idea!

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It seems our path of recovery lulls us into a false sense of security, we feel 'back to normal' so carry on doing things as if nothing has happened. I was feeling great for a couple of months then had 10 days of dizziness and generally unwell.

I'm going to have to train myself to recognise these periods so it won't be so scary knowing it will pass with more rest.

By the way, where are the photos of the barbecue last weekend? I can't find them.

Liz

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As so have said before on BTG I gather my information from several sources. Having had fibromyalgia for 20 years that roller coaster is a familiar ride. If I may suggest reading about how to cope on a good fibro site about that. I read everything about fatigue including coping with Epstein Barr, ME, CFS etc. they often have such good helpful coping information posting on there. Even if it is not what you have it still is the same symtom and often helpful. As my doctor said it often does not matter why but what to do about it. I also look at traumatic brain injury sites as well for help.

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