ericy

Thanks Surfer and Sandi for your information, Thanks Win for your good wishes.

I did more research last night (gawds I'm getting tired of research...never thought I'd say it before...I used to love it)

I found a very useful article on the American Heart and Stroke Foundation website which discusses a study done rating the different follow ups in the case of NASAH. On closer inspection I am concerned about the potential serious side effects of the catheter angio, and the study indicates that there really is very little difference in results.

Soooo, cap in hand I must write a note to my doctor, serve up myself some humble pie and apologize for my little freak-out yesterday. I will also cut some flowers from the garden for him. Too bad the raspberries are done for the season,otherwise I'd have brought him a nice basket of fresh ones. Hmmm, maybe I'll bake him something.

Seriously, making decisions is so over my head these days. I have trouble deciding which clothes to choose to wear in a day.

On a side note, Sandi, I did find some mention of the effects of the radiation from the catheter scan (they use 2-3 times more dye in that one) on subsequent brain function. I can't remember if it was in the study linked to above, or if it was a different one. I don't think it is far fetched to think there may be some residual brain function difficulties as a result of the invasive tests.

Thanks again for your feedback my NA (North American) fellow PMSAHers. What a trip, eh?

As Win says, I'm off to do the more painless, quickest and easiest route. Ahhh, the easy button, there it is!

Riane:

For what it is worth, I had 2 catheter angiograms (one while in the hospital and one as a follow up) in addition to CT angiography while in the hospital. I think, in my case, that they decided to do the catheter due to the first CT angiography being negative. My bleed showed up on MRI/MRV. In retrospect, they found it on the initial CT scan (regular w/ angiography) from the Emergency Room when they looked at it again. I have no side effects, that I know of, from the tests thus far. Getting back to work has caused some relatively constant, low grade HA for me, but I am trying to stay hydrated. We've discussed our mutually crazy schedules before.... God bless you, and keep us informed.

Eric

Eric,

Good luck with your day.

How many hours are you working in a day? How many days in a week?

Listen to your body. Be well. Rest. Drink lots of water.

Riane

Thanks Riane. Had to take one extra strength Tylenol at lunch today and managed to get down 2 L of water. I'll probably have 2 more before the day is over. Working 9-10 hour days (but take an hour for lunch), 5 days per week. But I am only working 3 days this week. However, I am the co-race director for mile charity road race this Friday (www.waynesvillemainstreetmile.com) and so I am still crazy busy with that. Avoiding too much physical exertion as best I can, but finding out quickly that mental strain can be as bad or worse. Today wasn't too bad. Hope you are doing ok too

Started back to work today (I'm a physiotherapist - orthopaedic). Harder than I thought...... Got about 3 hrs left.

As near as I can remember I was given much the same advice as you, Eric. Only difference, they didn't mention that I shouldn't be driving. It really was all rather vague. That vagueness and the fact that I was only seen by residents (the doctor was too busy to see me) contributed to me thinking that what happened to me wasn't that big a deal.

Perhaps it should be a no-brainer, but I did drive within about a week. Looking back, not such a good choice.

They also told me to get a follow up CT angio after 3 months. I have subsequently learned this is absolutely too long and quite ridiculous.

I am now somewhere on the waiting list for follow up CT angio. It's been 6 weeks since my bleed. I have no idea how long the waiting list is.

When I get too annoyed with Canadian/BC healthcare I remember that south of the border my family would be faced with losing our home over the hospital bills of this occurence. Our income is such that if we were American we would be those "working-class" folks that just cant' afford healthcare and make too much money for state programs. So, I remember that it's worth the wait, as I'm waiting in my comfortable home.

I have learned much more about recovery steps, process, and things to watch for here.

Thanks everyone, and especially Karen.

Riane:

My neuro doc had me do my repeat angiogram (catheter-type through the femoral artery) the week after my bleed! Praying that 6+ weeks isn't too long a wait for you. It is quicker here in the US, but expensive. I can tell you that I have a $3500 deductible for me and my 4 kids (my wife has her own insurance policy) and I pay $555 per month for it. My bill, before insurance adjustments and payments, just for my few hours in the first hospital's emergency room, was $4400. That is for IV, IV meds, a CT scan, a lumbar puncture. Can't imagine what my ER visit, admission, CT angiography, 2x angiogram, MRI, MRV, and 3 1/2 days in the second hospital is going to be. But, I will only owe my $3500 deductible - the rest is covered by insurance and I didn't have to wait.

You guys have been so very helpful on this site and I continue to pray for you all and your families.

I was told to take it easy, do nothing strenuous, work, drive, sex, for at least 1 month. Drink plenty of water - 3 liters a day, sleep whenever you need to or feel tired. Those were the only instructions (or anything) I received upon release from the hospital! I was told to follow up w/a neurologist and my GP 3-4 wks. after release. I followed these directions, with no expectations of what was to follow. Saw neuro and GP - both said to continue on with normal activities, prior to bleed, as tolerated! There ya go... Hopefully, with youth on your side and good physical fitness already in place, you will do well. Sounds like you're handling things quite right... hang in there and just listen to your body! If you do hit a lull, or have feelings of exhaustion, just know it's your brain letting you know it's time to slow down and rest! Recovery is different for each of us - I wish you well in yours - keep on with a positive attitude!!!

Thanks Winter;-)

My orignal neurosurgon said after 1 month I could do "light to moderate" exercise and after 3 months then I would have NO restrictions whatsoever. The neurosurgon knew that I was a competitive bicycle racer and mountain clmiber and surfer and still said I could return to those activities.

I just finished reading a book that was mentioned on this site about a doctor who suffered a non-aneurysmal SAH. He started running just a few weeks after his bleed and ran the London marathon on about his 1 year anniversery.

Personally I think exercise is a great thing during recovery but I didnt do anything more than walk for about 2 months. Just short easy walks helped alot though.

I am back on my bike and in the pool training for a triathlon in december.

Thanks Surfer, good to know. I am a runner (half marathon / full marathon), play / coach football (soccer), and like to do CrossFit as well. Everything is pretty physically demanding, so I plan on easing back. Did you find that your head had to feel "normal" before you were back at it full force? I still have mild HA on an intermittent basis, "clogged ears" feeling, but otherwise ok.

Eric

The following site may be of help, re: Frequently Asked Questions.

http://www.suht.nhs.uk/OurServices/Nervoussystem/SubArachnoidHaemorrhage/FrequentlyAskedQuestions.aspx

Yes, this was very helpful. Thank you Karen

Were any of you folks given any concrete guidelines on returning to work, exercise, sex, yardwork, drinking alcohol? Seems like the only medical advise I've gotten at all is "take it easy for 2-4 weeks".......

Hi Eric,

I know you have been told by others take it easy...but do as they say...... listen to your body.....plus if you do not

do as they tell you they will pounce on you..... lol J/K

Keep well and smile

Regards

WinB143 x

Thanks Win. I am a bit nervous that it seems like I'm feeling better too quickly, if that makes any sense. I am not under the delusion that all is well, however, and am not so naive as to think I won't have set backs. But, I feel pretty good today. With everyone's support at home and from friends, with the guidance and support of all my BTG friends , and with a lot of faith and prayer I feel good about my recovery thus far.

Everyone here is in my thoughts and prayers and thank you for all of your advice and support. Wish I could give you all my insurance co-pays instead of the docs who offer little advice

Hi Eric

Welcome to the site - I don't appear to have said hi before...

Sorry to hear you have suffered SAH also, and it would seem from your posts that stress may have indeed played a part!! Wow, you and Riane sure know how to fill your lives Did you find any time to sleep??...

I do hope you continue your recovery well and find a way to ease back into your work when you are able to.

I still try to ensure I have approximately 3 litres of water a day, and I switched to decaf teabags early on to limit caffeine/dehydration effects - it definitely has a major effect on wellbeing and reducing headaches

Take care

Kel x

Hello to you as well Kel. With regard to sleep; that is probably one of the causes of my bleed. I didn't sleep much. I handle stress pretty well and mulitask continuoulsy. But in the two weeks before my bleed my work load and stress levels were at my breaking point. I even got a few HA's in the days before my bleed and I NEVER get HA's. Must have been a warning sign, but I guess I'll never know. Water is a Godsend for me as well. Find that I balance it well with my caffeine intake since I cannot give up my coffee;-)

Take care as well. God bless,

Eric

There is a thread or two somewhere in here about stress. Many of us believe stress was a major contributing factor in our brains exploding.

Sandi K.

Found it. Very helpful. Thanks Sandi.

Glad to hear all is well Riane. 2 weeks post bleed I ran errands for a few hours and even cut the grass today (riding mower) Feeling pretty good, mild HA on and off and still with "clogged head" and fatigue. Praying I did not over do it; just trying to listen to my body and slowly ease back into activities.

This article really helped me: http://www.uptodate.com/contents/perimesencephalic-nonaneurysmal-subarachnoid-hemorrhage

Hi Eric! I'm so happy for you that you found this site so quickly!!! WOW - good for you! Sorry it's under these circumstances though.

I'm in Florida and it appears that the US medical professionals seem to know very little about the after effects of SAHs! Honestly, the folks I've corresonded with from US, have all been told pretty much the same thing. Rest for a few weeks, drink lots of water and then resume normal activities as tolerated. I was told no driving, working, strenuous activity for 1 month, maybe more. I had expectations of going back to work at that 1 month mark. Spoke with neurologist who told me to go ahead if I felt comfortable with it and play it by ear. I wanted to get back to work (Lic. Massage Therapist) and went back at about 6 weeks. Started out very slowly - a couple days a week for only a few hours at a time. Over the next 2 months, I gradually increased the days and hours. Much to my dismay, I was having migraine headaches - almost daily, extreme fatigue - I would come home completely spent and sleep 3+ hours afterward, with little energy later to do anything. Constantly being bent over while doing massage and exerting pressure, would cause my head to throb and become full feeling along with ringing in my ears and sensitive to noise and distractions of machines beeping, etc... I became very depressed about how my body was reacting to all this, not to mention the extreme fatigue. I kept at it for almost 2 months. Then, our receptionist was fired and I offered to take that position, knowing the physical aspect of massage was not working for me. The reception work did ease some of the headaches, but I found it very taxing to multitask, constantly having to think ahead, and was easily distracted by the constant noise and disruptions. Headaches and fatigue kicked in again. I continued on for another 6 months, when the owner of the company decided to eliminate my position, saying she had to make cutbacks! So I was then laid off. SORRY to have gone on with all this.

I am certainly not wanting to discourage you in any way, just sharing my experience and that for me - I went back too soon with expectations that, unknown to me at the time, were simply unrealistic. We all heal at different rates and there are many on this site who've been able to resume their previous work, athletic activities and have gone on to make astounding recoveries! Hopefully you will be one of those people

Being there is little to no after care here in the US, read as much as possible, surround yourself with positive, caring people, and above all, listen to your body and what it's telling you. There is a wonderful post (somewhere on the website? somebody help with location please ) called A Letter to Your Brain. It's beautifully written and helped me to understand a little more about what the brain has gone through and how we should care for ourselves.

Ok, I 've rambled on for some time here:shock: (always got in trouble at school for talking too much!). Congratulations on the clear scan for no anni! Do take care Eric, and wishing you a speedy recovery. Look forward to hearing more from you as time goes on!

Hugs to you my fellow American,

Carolyn

PS: Love the mountains in NC, beautiful country

Thanks for the hugs and right back at ya! This sight is wonderful and is already proving to be a Godsend. I will look forward to the article you mentioned. I think that I previsouly stated I was an orthopaedic physical therapist (physio for all of my Canadian and UK friends ) and am a bit concerned about the physical nature of my job. Plus... Drum roll please......... I am the owner, so mulit-tasking in the extreme is my norm. I addition, I am the Grand Kinight of my Knights of Columbus council (just took over in early July), I am the race director of the Waynesville Main Street Mile (www.waynesvillemainstreetmile.com) charity road race (to be held on 8/12 ), and have 4 lovely daughters ages 8 mos, 2 years, 8 years, and 9 years. Stress had to play a role in my bleed, didn't it? Maybe it was just a freak occurrence? Too many questions....

Eric

Hi, I'm glad to hear your angiogram went ok.

I had hearing issues for a couple of weeks after my bleed. I had super sensitive hearing. For months now loud noise has bothered me and I can't stand having the TV on when people are talking but the first couple of weeks was so sensitive that I could hear the plates touching each other in the kitchen cupboards. Perhaps the tinnitus is numbing your hearing and giving you the opposite effect? Hopefully it's temporary as mine was.

Go back into your normal routine very carefully. Be gentle with yourself. Imagine how you would treat a family member who had a sudden and serious health scare. Treat yourself as well, care for yourself. Everyone here told me to rest and not push myself too hard too fast. They were right.

Sandi K.

Sandi:

That's the strange part, I DO have that same level of intolerance / sensitivity to loud noise (sometimes tough with 4 daughters!) in addition to the inability to hear really faint sounds. Crazy, huh. My wife and I are quickly realizing that there are no specifics from the doctors in terms of return to activity and it seems like "listen to your body" is the best advice. Of course, we are concerned with returning to work, exercise, sexual intimacy, yard work, etc. Nothing really concrete from the docs.

Eric

Hi Eric,

What part of North Carolina do you live in? I've been to Wilmington, and my sister and brother-in-law live in Carolina Shores. My mother-in-law lives in Myrtle Beach, SC. We try to get over there every year to visit her, but I don't know if we're going to make it this year. I live in British Columbia.

I was told pretty much the same thing as you when I was sent home from the hospital. I can't speak for your situation, but in mine I've discovered that it's total BS!

One thing that I've been wrestling with the past couple of weeks is wondering what's wrong with me that I'm not doing as well as they led me to believe I would be doing. Thank everything that is good I found my way here to find out that the only thing that's wrong with me is I had a PM-SAH and the North American expectations of pick yourself up and back to the grindstone is absolutely insane!

So, go easy on yourself. Yes, by all means listen to your body, it's going to have a whole lot to say to you in this journey. Throw out any ideas/expectations (from the medical community or from yourself) of when you will be "back to normal", grieve what you have lost so that you can eventually make room for whatever your new normal is going to be.

I've had some developments in my world in the past 24hrs, but I'll post them over on my intro thread.

Ciao for now.

Riane

I am in the mountains of Western North Carolina. Thanks for your insight. I don't have any preconceived notions for sure. I have gotten more info from an article one of my best friends (he is a rheumatologist) gave me and from you all here. Take care of yourself, I look forward to our chats Riane.

Thanks guys, it realy does feel like a family here already and I can tell you are very supportive of one another. I thank God for finding you. Angiogram today was normal!! So I guess I am officially a NA PMSAH' er. Resting comfortably. Little more of an overall mild-mod headache today. Still with fuzzy, "clogged head" feeling. Tinnitus when it's quiet. Seems like my hearing is a bit off too, like I don't have a really keen sense of hearing; can't quite hear the rubbing of my fingers across my pants, things like that. But I feel blessed to have no neuro deficits and the pain is really controlled. A bit of anxiety about resuming exercise and things like that but I am determined to go slowly. I have a great wife and kids and tons of support from friends and family. I work as an orthopaedic manual physical therapist and generally have a pretty physical job so I am not planning on going back to work until 8/8. My bleed was on 7/18. Any thoughts?

Eric

Thanks Sandi. Really glad to be involved with you guys.... Hate we had to meet this way. I will let you all know the results of my angiogram tomorrow.

Hi Ericy,

Wow, that's a recent bleed. I'm amazed you're on-line already. Welcome to BTG.

I had my bleed a month before you, on June 17th. They sent me home from the hospital three days later on the 20th.

I spent a lot of time lying down the first two weeks, since my head ached so much and I couldn't move my neck much at all. As a result of that I had sacrum trouble. At least I thought it was because I was lying down so much (I was very active and had trouble sitting down pre-bleed). When I got up to go to the bathroom or change rooms, my sacrum would painfully sort of "catch" and I'd have to walk in a funny position that reminded me of my grandpa his last few years of life. That cleared up after a few weeks as I increased my activity.

Hmmm...I still can't bend over without almost toppling over, it makes my balance go all wonky.

I can however go for a walk most days.

I don't know where you are located, but here in Canada there seems to be a belief that one can/should start back to work several weeks post PMSAH. I'm getting the gist that there is a different approach in the UK. Sounds like things are very civilized over there.

Take time to heal Ericy. Listen to your body. Come here when you need to give yourself permission to not acheive what you did before.

Riane

Thanks Riane. I'm actually in North Carolina, USA. The doctors have basically just said to not strain, lift, work for 2 weeks and then slowly get back into activities with symptoms being my guide. Really hoping the angiogram tomorrow shows no aneurysm. I can see that this forum is going to be wonderfully supportive and reassuring. God's blessings to you.

Eric

hey ericy, i had a perimesencephalic SAH about a year ago. everything you are experienceing sounds normal. you'll find most people on here have similiar stories. is your next angiogram the catheter type or a CT angio ? The chance of them finding an aneurysm is very very small so dont worry about taking either test.

The good news is the long term prognosis of this type of bleed is excellent. The chance of it ever happending again is between 0 and less than 1%.

Take everything very slowly for the next few weeks and rest alot and relax alot.

The back pain will resolve over time, probably in the next 4-8 weeks. I found that short slow walks helped alot.

Remember though that recovery from these bleeds is a long term process so dont get discouraged if you have some set backs.

Good luck with everything.

I have a catheter angiogram. Thanks for the reassurance.

Hey everyone. So gald I found this forum. I had my PSAH (will have my 2nd angiogram tomorrow to see if an aneurysm shows up or not as the first was negative) on 7/18 after I came off of the field playing in a soccer game. After a CT, LP, CT angiography, angiogram, MRI, and MRV the docs diagnosed me with a perimesencephalic SAH. Doing fairly well, been home 5 days and taking it very easy. Headache is mild at best, but do have that "fuzzy" feeling in my head, some tinnitus, a "stopped up" feeling in my left ear (feels like I have a hangover and water in my ears). Moving quickly is not fun, but getting better. The worst pain I have now, which can be intense but brief, is a pain along my sacrum and both buttocks that is throbbing (and corresponds to a similar throbbing but mild in my head) that lasts for 5-10 seconds after I stand up from sitting or lying down. Anyone else have / had this? Hope my test tomorrow comes out well. Just found out from my GP yesterday that my first CT scan that they thought was negative actually showed the bleed in retrospect after the MRI/MRV results. Up until now the LP was thought to have been positive only due to the trauma of the test. I look forward to chatting and sharing with you all. Oh, I almost forgot - also have a lot of adverse nerve tension in both legs - can't raise them straight up, straighten out my knees when sitting, or bend over yet. And, last but not least, straining in the bathroom is met with the same sacral / buttock pain.