Post sah

[Coralann]

Hi all

 

i suffered my sah middle of May this year.  After 2 angiograms, it proved negative.  I was released from hospital without any follow up. I feel I have just been left on the shelf. I have double/blurred vision, dizziness/balance probs and extreme fatigue/memory/cognitive difficulties.  No one understands or appreciates how I feel.  My doctor keeps providing sick notes for me but I really need help and answers.  Any replies on my next moves will be greatly appreciated 

[Skippy]

Hey there

 

I'd go back to your GP and demand to see the notes on your event.  Tell them you don't want sick notes, you want answers - they are your records and you have a right to see them - especially under new GDPR rules (if you're in England).  

 

If you've had a non-aneurysm SAH then you need to know and you need follow ups - demand these from your GP.  If you don't get any joy, complain to highest authority at the practice.

[Catwoman23]

You need follow up with gp and neuro and may be the surgeon. You can request all your records.  Write down your questions. Take someone with you to the appt so they can be your voice. It is still very early so rest, fluids, don’t stress. There are plenty of good threads to read here. Goodluck.

 

[frmertd]

I frankly learned more from this website than from any doctor. The first 4 months post sah were very hard for me. Try to read other peoples posts as it helped me immensely. Daffodil is someone whom you should read all her posts.

[Coralann]

Thanks all for your comments. I agree I can empathise with comments from this group. However just thought medical profession would be more supportive with all their technology. Awaiting appt at ophthalmology as have temp prisms on my glasses. Not really helping though as need to wear glasses all the time now and only have reading or driving glasses.

 

Ps does anyone know if legal to drive. Not driving at mo due to vision probs  have notified dvla but not heard anything 

[subzero]

Hello,   BTG added a new forum recently to help answer questions about driving after SAH

 

http://web.behindthegray.net/forum/23-driving-after-sah/

 

If you have any questions please don`t hesitate to post again.

 

Subs

 

 

 

[ClareM]

Coralann

 

it is very common to be discharged without much advice, I really don’t know why this happens. 

Is there a nurse specialist at the hospital you were treated ? If so give them a call and they should be able to answer all the questions you have. 

 

As a start try calling the ward from where you were discharged and ask if there is such a person and if not what do they suggest. I think it is fairly common to have such nurses nowadays so should be fairly easy to speak to someone. 

 

Dont suffer unassisted you are entitled to more support. Hope you get some answers. 

 

 Clare XX 

[Winb143]

Coralann,

 

A majority of us say "They discharged me" and we do not know what happens next.  If it wasn't for this site I'd have been at a loss.

 

My mind was in a bad place ie thinking I would die and so many morbid thoughts, but I came on here and saw people in the same boat and they were laughing.  I then realised there is a life after a bleed and am in a much better place for coming on here and seeing others who had the same as me.  Now they could laugh so can I now and life is good.

 

Good luck and think happy thoughts when possible xxx  Next move start living xxxxx Be Happy. Easier said than done but it helps,  do not listen to others problems while you are healing xxxx

Love

Win xxxx

[dbc]

I’m a year past my NA SAH. I sympathize with you more than you know. I have been complaining of these exact same problems since shortly after my event. The doctors don’t really have any insight and sometimes don’t even admit my complaints are valid. I need to have neuro psych testing but other than that I feel alone.

 

One of the doctors did an eeg which showed up abnormal the first time and now they are trying to label me with a seizure disorder and I know I’m not having seizures.... all so frustrating. My advice...... give yourself tons of time to heal mentally and physically and stay as far away from any stress and tension as possible. Oh, and sleep....

[frmertd]

From reading your experience, and please dont take this the wrong way, but you were kind of "left on the shelf". You were frankly mistreated by your local medical community. Im not going to get into politics , but you live in a country with socialized medicine.

 

The money is not there in the system to give people comprehensive follow up. Everything is "free" , but the standard is lower. That is why it is very important now to have close family support, rest, time off work, stress reduction to let your brain get its rest. If you feel strongly that your local medical system abandoned you (and it sounds like they kind of did), perhaps a letter to the newspaper or local politicians would help.

 

Good luck with the recovery, that is a very hard time. If it makes you feel better, my care in the hospital was probably far superior to yours, but once discharged, my GP really didn't know how to deal with me. This website really guided me, not the GP.

[Catwoman23]

To be fair, I don’t think we gp have a lot of patients with SAH.  I know thats not the excuse but I have loads of people with diabetes, heart disease, high blood pressure, depression, lupus, rheumatoid arthritis, etc etc. so we know a lot about those diseases.

 

We also learn by looking at the notes from specialists. But I don’t have many with SAH. I can probably count with ten fingers or less. I don’t think many survive. Thats why you are very lucky and should appreciate each and everyday. 

Sometimes Doctors don’t want to admit that they don’t know something so they kind of brush it off or don’t care.

 

Another sad part is even though we are not socialized medicine but we are being controlled by the insurance companies and lawyers. So its a lot of phone calls and a lot of clicking on the computers to keep up with what Medicare wants. Lots of clicking and more clicking while trying to keep up with cme. We have to click for Medicare patients in their chart the med reconciliation, weight, being on aspirin, flu shots, pneumonia shots, depressed or not, eye exam or not, diabetes or not.

 

We have to be a part of aco and have emr system (we have it since 2009).

sorry if I m venting but I started work long ago and each year its harder to work as a gp. Thankfully I have very good patients and its easy to practice after knowing them for years because there is that trust factor.

 

I would definitely push it if the gp and neuro are not paying attention to you. You can take a friend/ family member with you to ask questions. 

 

I have been at Yellowstone for a week and leaving tomorrow. Im not a nature lover. I don’t even garden because Im afraid of spiders. We sneaked into 55 yr old plus community because we are lazy to do any outside work/ snow shoveling.

But really enjoying the nature and being away from everything. 

 

Good luck.

[frmertd]

At the end of the day, the 4 months after SAH are going to be hard and your doc can't help you. The blood has to be resorbed, and as it is, it will be an irritant that will cause you many,many problems. But there is a light at the end of the tunnel. I wish you the best and will pray for you.

[Coralann]

Your comments are all really calm and soothing. Thank you.

 

i can definitely see an improvement in the physical ailments, apart from my eyes, but the mental side is getting worse and I seem to be developing more problems than I realised. My anger outbursts are causing me most problems.  I want to, but cannot control so just walk away.  Noise is a problem and everything I eat tastes bland.  Concentration is hard and I keep forgetting things, it is as if my brain only takes in what it wants.  Is this all normal activity?

 

I left hospital on 30 May and still have not had a follow up appointment sent to me.  I have left a message for PALS to contact me with the hope they can help.

[Catwoman23]

Please look/ search under personality changes/ Katie ee and you ll see good suggestions

 

 

[Daffodil]

Coral, 

 

i think you need to perhaps look at what you are asking of your brain and then think about what you can what you can do to give it time and space to heal.

 

Try keeping a diary of what heightens your emotional response or shortens your fuses. 

 

Here’s  the thing, our brain run everything we do and it uses huge amounts of energy to do it and it’s a pretty amazing complicated system of how it does it. All of us got blood mixed into a space which is a very delicately balanced system of minerals , chemicals and my personal theory is that everything gets completely out of whack when that happens and circuits don’t function as well. There’s is damage , different and unique to each of us but nonetheless it seems there and you need to understand what yours feels like to you so you can learn how to adapt gently. 

 

The physical regains and recovery in my experience came faster and quicker than the emotional and cognitive and dealing with sensory overload was a big deal. Too much noise, light, conversation, emotions threw me out completely, brought me to standstill almost . all my taken for granted cognitive capacity that I had previously was gone and I had to slowly build up my capacity for dealing with it and that meant dialling everything back and managing my load. I still have to today six plus years on 

 

Look up pacing, you may find it can help you. 

[Xmartz]

Find a neurologist!