My story so far

[ian rd]

Hi , nice start to the new year, admitted to hospital on Jan 2 with a nasah,  after a total of 4 ct scans and 2 angiograms I was sent home on Jan 16 . On day of discharge I had my 2nd angiogram and told it was alright , have 6 hours bed rest and a doctor would come and talk to me , well 10 hours later  and no doctor , I was given my meds and told  I could go home.  Still have a constant headache which varies in pain and sleepless nights. I took myself for a walk today and managed about 100 yards and was exhausted. 

 

 

[ClareM]

Hi Ian your discharge sounds very like mine, it seems to be a common theme after SAH. 

 

Was there a nurse specialist where you were treated? If so give them a call if you have questions they are usually really helpful. 

 

Rest up, drink lots of water listen to your body. Take one day at a time and don’t entertain the idea of work for a good few weeks if not months. 

 

I hope you have a sympathetic GP who will help with pain relief. The headaches will hopefully subside but don’t suffer in silence. 

 

All the symptoms you describe sound normal so try not to stress too much. That will only serve to make headaches and fatigue worse. Take it slow and take comfort from some of the posts from people on this site. Glad you have found us, keep us posted on your recovery. 

 

Clare xx

[Super Mario]

Ian, advice to help with headaches is to drink lots of water to keep you well hydrated. It really does help.

As Clare says it is common that very little or no guidance is given upon discharge.

[Tina]

Hi Ian

 

A very warm welcome to BTG, glad you found us.

Some very good advice from Clare & Super Mario. It is very early days for you, go steady and rest up plenty.

 

You will find lots of helpful information and support here.

Look forward to hearing how you are doing.

 

Take care

Tina xx

 

 

[frmertd]

Dude, i had the same in November and had the same experience. Do yourself a favor and take off work, go into a quiet stressless environment for 3 months or even more if you need it and heal. You had a VERY serious medical problem that could have killed you but didnt. Be grateful to God you are alive. You may have severe headaches, weakness and problems for 3 months, or possibly more. There is no timescale for recovery, everyone is different, but you are alive.

 

Private message me on this site anytime ,man, if you wanna talk. I just went through it and its rough. You are not done, you have 3 months or more of rehab now. Read all the posts here. I did and it helped a lot.

[Catwoman23]

Welcome to the website. You will find that there are many useful posts here. I learned a lot and telling my patients to go to the website . I have many stroke patients but not so much with SAH. You ll learn that rest, sleep and hydration are the key. Stick to people who help you in times of crisis and don’t pay attention to fair weathered friends. It s not worth your time or worry. Don’t react to them.

 

See a good primary care and neuro. Follow up with them. Go for second opinion if needed. I just saw a lady again with Avm malformation and bleed in 97. She still has some headaches but I haven’t seen her x 2 years since she lost her insurance.  

 

I would make a list and ask questions . Everyone is different. Be careful with pain meds since they can be addictive and you might not have more room to add if you take many already.

 

[Chris G]

Welcome and best wishes for your recovery.

 

It does take time and patience to overcome the trauma you have experienced.  As others have stated, please listen to your body and rest when it tells you too.  This is not a time to push yourself.  I took it very easy for a good 3 months before I started trying to ramp up activity again.  It will be a roller coaster ride of ups and downs.  Please don't get discouraged.  I hope you have a network of family and friends who understand and will be there to help you through.

 

Best wishes,

 

Chris

[Swishy]

Ian I have found this site eye opening...I am trying to read most of all that is on here...I had a NASAH 9 months ago, a small one, followed 2 days later by severe vasospasm.... 8 days in ICU, many days I don't remember then off to rehab for 2 weeks.  I too feel I was just discharged to Physical therapists and feeling like I needed some more MD guidance.

 

My appointments are months apart and they don't seem to really help me get on with my life or answer my questions (which maybe I realize now they can't) like when will the fatigue lessen or will I always feel swishy when on my feet...but as many here have said there are ups and downs and it takes time AND we are alive and can type :)...Day by day let your loved ones help and know, as I have discovered, there are many of us here giving support and encouragement...

 

Best wishes as you recover

[frmertd]

I felt like there were 2 phases to dealing with this event for me.

#1 )the hospital phase and #2) the next 3 months phase.

 

You are entering phase 2 and it has challenges too.

The strange sleep-wake cycle thing was frustrating. The headaches and sudden weakness was (and is) hard.

Dealing with work and family is a part of this phase.  My emotions were out of control, too. Its funny in retrospect. You will have new challenges.

 

Good luck. I really got more useful help from the people on this forum then from any doctor! Just relax, its like a rollercoaster.

Once you are strapped in and it starts moving, you just have to sit there and take it. There is nothing you can do. I did a lot of walking and drank fluids, that helped. And whatever you do, stay away from stress and stressful people! your brain is injured and doesn't need that right now.

 

They call it "cognitive rest". I call it "stay away from stressful people."

[subzero]

 

 

 

Winnie`s favourite quote fmrted.... `No stress!`

 

 

Subs

[Catwoman23]

I have been a doc for almost 20 years so I have seen a few things. I have seen many people who have everything in life and still are not thankful or happy about it.

 

I think stress is what you make of it, how you react to things. If you react to someone on the road for passing you, you might get road rage. But if you think may Be he has something important to get to and let it go, you won’t be stressed. It s called wise attention. 

 

I believe in five virtues, not killing any living beings, not taking what is not given, not lying, not having sexual misconduct, not taking any intoxicants that clouds your mind. That makes yourself safe and others safe from you. 

 

One should practice the opposite of these; loving kindness, generosity, reliability and loyalty, right speech and mindfulness. Somehow it makes sense to me.

 

One can not control the people around them. Again I have seen many people change when a loved one is sick. If you are good and kind and they cannot be with you, they do not deserve you period. It is their loss forever.

 

This is a good website. Trust me I have patients I see over the years and I am always on the lookout for the websites.

 

Diabetes and hypertension etc have lots of info out there. Obesity also( many are fat here in this country unfortunately) has lots of  info. Multiple sclerosis is another tricky disease that people need support groups. So is dementia.

lupus and rheumatoid arthritis patients tell me sometimes websites can be depressing for them since they start thinking about things they don’t have yet. Ehler Danlos is another rare and tricky disease.

 

I don’t have many patients with SAH. The fact that you can read this website says you are very lucky.  Please do good things, meditate , have patience, take one day at a time. I do believe in us reaping what we sow eventually.

good luck to all. We have ice today so we are slow.

[frmertd]

Can I add a little more? You seem to have gotten a little (how should i say this) unhelpful care from your hospital.

 

As a doctor myself for 18 yrs, let me apologize. It seems like noone talked and explained things. For this reason you are,imho, minimizing your event and the road ahead, or you dont understand.

 

As far as the hospital booting you out, sorry. Our modern medical system is more procedure orientated than explaining things orientated.

 

A great ICU nurse explainned to me what to expect better than anyone. So I was lucky. I will always be grateful to her.

 

For this reason, you seem to not understand the gravity of what you went through. 50% of patients with hemmorrhagic cva die, often before reaching the hospital!. Of the survivors, 1/3 to 1/2 can have paralysis.

 

You and I have neither, so perhaps buying lotto tickets that day was a good idea. I heard from you a common comment that makes me chuckle (I dont mean disrespect, I hear it a lot and it is wrong) the common thing I hear is "It was just a small bleed."

 

As an ER doc for many years, can I emphatically tell you this: there is NO SUCH THING as a small bleed. A bleed is a huge, life threatening event!

 

Us ER doctors and nurses get very nervous when the ct scan report comes back like that. A "small bleed" near the brainstem can stop your heart, cause herniation of brainstem, it can expand and turn into "massive bleed" in a second.

 

A Hemmorrhagic cva is the term for what you had. One of the most dangerous things in all of medicine. Good luck in your rehabilitation. That is difficult, too.

 

Looking back, perhaps my rehab was easier because by being in the field, I understood how lucky I was to have a new lease on life. I didn't complain about headaches or weakness. I was just glad to have survived! Because I understood the gravity of what just happened. If I am overemphasizing this, it is because my understanding of its gravity, put the rehab in perspective. Your hospital's failure to really emotionally help you may have you minimizing the event. Understanding the seriousness helped me put the rehab phase in perspective. (well, at least Im still breathing!)  Im getting frustrated here. I cant seem to explain my motivations, sorry. Maybe it is the brain damage. good luck 

[Catwoman23]

Ian when I first read your post, I too was upset by the care you got. That is not how you discharge a patient.

 

They need to sit down, explain things, hook you up to ancillary services etc. I wanted to say something but I didn’t want to add fuel.

 

I always see commercials for lawyers telling people to sue their docs on tv all the time.

I don’t know if they are short staffed or what but that s not how a pt should be discharged.

 

But you have to understand doctors are under pressure too. I don’t do hospital work since I finished residency.

 

I remember people telling me the average stay for a pneumonia pt is three days. They come and check your chart and they want you to discharge these people even though they have other conditions.

 

I now only work in the office and we also have so much red tape and paperwork.

we have to do prior authorizations for simple meds . Has to beg insurance doctor to get mri approved even though they never saw the pt, fill out forms for test strips for diabetic patients every 3 months, forms for diabetic shoes, cpap machine, wheel chair( they need special documentation), diapers, varicose vein surgery won’t be paid because it counts as cosmetic not essential, podiatrists and chiropractors now can’t order x rays, they need icd codes for every single lab we ordered, etc etc. it is not the medical field ten yrs ago.

 

We used to just fill out cpap and mask/ tubing prescription. Now we have to fill out all kinds of paperwork because they don’t trust us.

so I do apologize for you not getting the care you deserve.

 

Frmertd,

We are looking for a new partner always since one will retire in a year or two so if you ever got tired of the er and wants to deal with paperwork, you can find us.

We are private and semi rural with lots of good patients. 

 

[Macca]

Hi,

 

As I see it, hospitals treat the clinical needs they are presented with and they do it very well in the main.  The 'aftercare' ie when you are released from hospital is a 'gap,' and is a different thing altogether.

 

What happens after release from hospital is that the patient(and their carers/families) acquires a thirst for knowledge - what happened?, why did it happen?, what can I do about it?, why does it affect so many different parts of my body? etc etc and this is where a site like this one begins to fill the gap. 

 

Where hospitals could improve is by garnering the knowledge from people like us and putting it into some form of leaflet, on-line Q&A or some such thing.

 

The problem, though, is that the effects of SAH are so wide ranging and no one source could cover absolutely everything, because a SAH and its effects are a personal thing, varying in degrees of effect and emotional and practical impact.  That is why this site is becoming so popular, the experiences are from real people who have gone through it and come out the other side.

 

There are things though that are common to many SAH such as memory loss, headaches etc and these could be dealt with.  It's just the effects that are different!

 

It wouldn't cost a great deal of money to put information together but sadly most hospitals cite money as the primary excuse for not doing it.  All it needs is a co-ordinated effort to put something together and let all hospitals use it.  It does not need to become a cottage industry - just a one off effort could be enough!

 

It needs someone in authority to say 'Yes let's do it!' instead of always coming up with excuses of why not to do it!

 

Sorry to rant but it seems so obvious to me!

 

And 'yes' I am a survivor, lucky to be here, and living and loving life to the full, in so far as I am able!  That's the best way to say thank you to those who saved my life.

 

Macca

 

[Swishy]

Excellent rant Macca....right on....When I expressed distress, interest and confusion with my after symptoms to the Neuro taking care of me he did suggest a Wellness clinic...Problem with it was they don't often have patients with any type of stroke, never mine my personal one.  I was told it would help me stop thinking about it...I get it...move on, enjoy my life...but first I was thirsty to find out what happened to me and perhaps meet someone that shares some of my experiences....this site is as close as I have come to meeting someone...thank you all...and I am moving on but there could be better, more informational after care...

 

I barely remember anything from my 8 days in ICU...I left for rehab knowing I had a stroke thinking I had 2 but the second episode was vasospasm....and knowing I was still alive... truth...thank goodness for the internet or I probably wouldn't know much more today nearly 10 months out....