Not sure what to do or where to go

[Im4miracles]

I know you all can't give medical advice but I am going to ask what I need to ask and then we will see what can be said.

 

My NASAH was 7/29/2018.  I started back to work on 9/6/2018.  Things were going really good.  Headaches WERE not existent. 

 

Then for the last 8 days now, I am getting a headache every day.  They aren't bad but they are very bothersome to have on and off daily. 

 

Why would I go a couple of weeks without them and then all of the sudden I have them this often??  I called my Neurosurgeon about them.  I was told I cannot take ANY NSAIDS (including Ibuprofen).  I can only take Tylenol.  That doesn't touch these headaces AT ALL!  If I ever got a migraine (which was MAYBE 1 or 2 a year) I would take an over the counter Migraine medication.  Now, I am not allowed to take that because it has aspirin in it.  I can't take Ibuprofen. 

 

They REFUSE to give me anything to help but did refer me to a Neurologist.  That appointment isn't until 11/5/2018.  I asked what I was supposed to do about the headaches until then.  I was told I was not going to get anything prescribed until then and IF the Neurologist decides to do so!  Then the Neurosurgeons office told me to call my Primary Care Doctor.  She will not do anything because she does not know what to give me after the stroke and not allowed to have NSAIDS.

 

WHAT AM I SUPPOSED TO DO???  I CANNOT wait until November to get headache relief!!

 

Next, does anyone have blood pressure trouble after the NASAH?  Mine use to be great.  around 120/80 or so.  Now, it is TERRIBLE!  It seems to be worse at night.  Tonight I took it and it was 160/120!!

 

 I am taking Verapamil for a few more weeks to help control Blood pressure but is it really working?   I can feel the swelling in my body.  When I call, they tell me to go to the ER.  I am blown away by this.  It seems to me that they don't care! 

 

 The headaches aren't bad enough (like they were when the stroke happened) to go to the ER.  I told them I can't run to the Emergency Room everytime I get a headache!  UGH!

 

A few weeks ago, I got a 2nd opinion on my NASAH and my Meningioma with another Neurosurgeon.  So I called them about the headaches and they too told me to go to the ER.  This lady said with the intermittent headaches that I could have another bleed.  I thought you had to have "the worst headache of your life" to worry about having another bleed? 

 

I am so tired, my left arm and both thighs are so achy, I can't drive with my left arm as it is so "tired".  I thought it was due to holding my iPad but now I am beginning to wonder.  I have on and off nausea and sore neck.  But all this is intermitten.  I am so upset that these providers don't seem to care!  They just want to brush me off to the ER. 

 

Then when nothing is wrong, I am going to look foolish for rushing to the emergency room for nothing and rack up bills by going foolishly.

 

Any help you can suggest without giving Medical Advice (if that is possible)  would be greatly appreciated.

 

Michelle

 

 

 

[jess]

Hi sorry they are not helping you find something you can take. I obviously cannot give medical advice but I can tell you what my Drs prescribed for me co-codomol they are good and they work they also give me amitriptyline for nerve pain ask you Drs if you can have that xxx

 

The headaches, i was fine but my headaches came back too but I have had them 16 years now my Dr said they will never go away they do get milder and less often thought xxx

 

Weak arms it might not be anything to do with you sah like you said it maybe from holding your iPad or something like osteoarthritis which I have and it causes my arm to feel weak xxx

 

Hope this has helped a bit and you start to feel better soon xxx

[Daffodil]

Firstly I think you should push to go back and be seen as the arms aching etc needs to be investigated and you seem to have a few worsening symptoms. 

 

Blood pressure tablets and swings in pressure can cause headaches but also just being back at work may have created a reaction for you.

 

All the things you did before without thinking, the everyday processing of thoughts has been impaired by the bleed, you may be feeling well but your brain is having to work harder unseen to do the things you have always done. That takes energy and effort and can manifest as a headache or other odd aches and pains. The brain itself doesn’t register pain but of course controls everything in your body. I had strange effects for years and even now can get ocular migraines from doing too much which is very scary to suddenly lose sight....

 

Maybe look at how you are managing your activity. Have you just jumped straight back in? If yes, try to slow it down a little, put pauses between tasks, drink more water and concentrate on one thing at a time. Try to block background noise when you are working on  something. You need to give your brain space and proper time to heal.

 

If you fell over and really sprained your ankle you would have swelling, a massive bruise and you wouldn’t for a moment think you could run. It would be tender. Now apply that logic to the injury you have had in your brain, you can’t see it but you have to be kind And gentle with yourself as you heal . It’s not even two months , you need to try to pace yourself I think and that should help. 

 

Best wishes and really hope those headaches improve 

 

[Louise]

Maybe your doing too much and worry wont help are you keeping yourself well hydrated that really does help.

 

On 20/09/2018 at 04:45, Im4miracles said:

on and off nausea and sore neck.

 

I really would get that check out...

 

 

[Im4miracles]

I am in ER to make sure evetything is ok.  I am doing too much.  I didn't want to go back to work yet but I had to.  

 

Getting ready to have CT scan.  

 

Michelle

[jess]

Hope everything is ok xxx 

[iola]

Headaches will come and go.  I've tried it all.  Can you go to your GP?  He may be able to give you a prescription for something more effective. I could not take blood thinners for forever but I did find Tylenol migraine that helped but honestly a Coke with caffeine did the trick sometimes too.  

 

Your brain is telling you to slow down.  It's not ready for all that stimulation.  Hope all is well.

 

iola

 

 

[Tina]

Hope all is ok Michelle, take care xx

[Winb143]

You sound stressed out Michelle in your post is that because of headaches?

 

No I'm stressed lol just deleted all I typed to you xx 

 

Good luck at Hospital at least you will put mind at ease one way or another. 

 

Try and relax and take things slowly, easily said than done...Good luck and keep in touch xxxx

 

[Im4miracles]

I am not necessarily stressed but I do feel I am over doing it.  

 

I tried to tell the doctor I wasn't ready to go to work but he said there was no reason not to go back.  I gradually went back but apparently it was still too much.  

 

The headaches were gone but they returned.  So that could be from doing too much.

 

I am frustrated because he doesn't seem to want to do anything and neither does my primary care doc.  I feel left alone in something I know NOTHING about unless I read it online or what I have learned from you all.  I feel like I've been dumped!

 

They keep telling me to go to the ER because they don't want to deal with me.  So yesterday I did and when I called to tell him, I had to call the hospital and have my own  ER visit records faxed to him.  I was told my his staff that they will review my records and IF they feel I need to be seen,  THEY will call me to schedule an appointment.

 

Did I mention that last week I called about the headaches and they said they would refer me to a neurologist for the headaches.  They did and my appointment is not until 11/5! ?.  So I asked what am I supposed to so about the headaces until then.  Go to ER was the response.

 

I knew I didn't need the ER but I went anyway.  Of course they did a CT.  It was normal, as I expected.  So that was a waste of time AND cost me $100.  

 

I call about the headaches because Ibuprofen helped them but they told me I can't take that.  No NSAIDS because of them thinning the blood.  Tylenol doesn't work for these headaches.   So I have NO relief.  I don't know what to do.   

 

I can't go on pretending or ignoring them.  It's not getting me anywhere but depression.

 

Then my left side is starting to be painful.  Arm and leg.  I can feel the swelling happening all over my body.  Blood pressure is very high.  For me anyway.  170/120 is VERY high.  I am usually under 120/80.  And my memory is crazy too!  

 

Maybe I am stressed.  Because of the doctor.  I have never been through this.  I don't know what is normal and what is not.  Unless I read it online.

 

I just want to sleep/hide under a rock.   I am trying to ignore that and keep myself busy.  Very emotional right now.

[Super Mario]

It can be vicious circle, you worry, your blood pressure rises which in turn can give you headaches.

Please do not take offence but I am wondering if your problems are phycological  and possibly some counselling may be in order. Other members have had counselling and found that it helped them. Of course the route to that in the UK is via your doctor, I don't know about the US.

 

Meanwhile, please try to stay calm, take deep breaths and try to distract yourself from the headaches. I have found that the more you think about pain the worse  it seems to get.

[Im4miracles]

Sorry I am just now getting to this.  My husband and I just celebrated our 27th wedding anniversary on Friday the 21st.  We were away for two days!  ?

 

I am taking offense!  However I will not fuss at you because I know you are only trying to help.

 

However, do let me ask this....

 

So I am psyschologically making my headaches happen?  HOW and WHY would I do that? 

Let's see...I am very healthy, I have a stroke.  I am taken good care of in the hospital then once I am released, I am ON MY OWN!  I was told I would have backaches and headaches.  They could last 1 week, 1 month, or up to 1 year or more.  You can't take NSAIDS but you can take Tylenol that won't help your headaches.  I'm done taking care you.  Contact your Primary Care provider (PCP).   PCP has never taken care of a stroke patient so she says contact your neuro doc.  I contact my neuro doc.  Go to ER. I don't need to go to ER.  The headaches aren't bad like they were the night of the stroke.  I just need help getting the headaches to subside.

 

So I FINALLY go to ER knowing I didn't need to.  They find nothing wrong and now Neuro doc says "sorry".  I can't help you!  So I am suppose to see a COUNSELOR to help me psychologically?  I am flipping ticked off because no one seems to care about me now.  I lived through the hospital stay, they are done with me!  They get rid of me by telling me to go to the emergency room or seeing my PCP.  They don't want to deal with me now.   Wouldn't you be upset too?  You are having troubles and NOBODY wants to help!

Mr. I do not have a psychological problem.  I have headaches that come and go and they bother me!  I do try and not think about them. I am working!!  Taking back 7-20 patients a day!  Taking phone calls, doing physician referrals.  Then there is coming home, cooking dinner and cleaning my house, doing laundry and taking care of my 4 kids and my husband!  So I need a counselor to tell me I am psychologically causing my headaches???  These headaches have been on and off for 12 days now.  They are not as bad as the night of the stroke.  They are very bothersome though.  They went away for about 2 weeks but for the last 12 days, they are here.

 

I have high blood pressure EVERY NIGHT too.  So let's see, I am psychologically making that happen too?  Yea, I want headaches and high blood pressure.  I have nothing better to do than to get these and bug the doctors to help me?!  I was very healthy prior to my stroke.  I did NOT have high blood pressure.  I did NOT have diabetes.  The ONLY problem I did have was high cholesterol and that was CONTROLLED with medication!

 

I do not see counselors. I do not need a human telling me their take on how I should handle my problems.  I have an AWESOME CREATOR up in HEAVEN, He is my counselor.  Not a human here on earth!  I have problems, that is for sure, but making myself have high blood pressure and headaches?!  I don't think so.  

 

So let me ask you this, I am having pain in my right arm (so bad that I can't straighten (Stretch) ), leg and hip.  Is that psychological too?   Then there is swelling in my hands, arms and legs. I can FEEL them swelling.  I seem to be pretty good at making my blood pressure high and giving myself headaches.  So maybe I am psychologically making it all happen.  NO.  Check this  out.    https://www.stroke.org.uk/sites/default/files/pain_after_stroke.pdf

 

Like I said, I do have problems and I do have a psychiatrist and he prescribes me medication.  I was taking 2 medications for about 7 years.  The Neurosurgeons stated THOSE were the cause of my STROKE.  The SSRI's (Abilify and Wellbutrin).  So the Neurosurgeons made me stop taking them.  I don't feel any different being off of them.  I might go back to the Psychiatrist but I will NOT EVER see a counselor!  You see, I tried to harm myself three times in 2011 (well, I didn't "try", I did harm myself).  I got nowhere with counselors.  I went thousands of MILES with God above!!   He is my ALMIGHTY COUNSELOR!

 

I know you were only trying to help but that was of no help at all! ?

 

[Crazy]

Hi Michelle,

 

Im with super Mario on this one, talk to a professional. I had my pmsah the day before you, I’ve already had three sessions with the psych. It’s helped me immensely. I’m very lucky because my recovery seems to be going very well but I’ve stayed positive and talked as much as I can about it to anyone who’d listen and I’m sure it’s helped. The physical side is important but I truly believe the mental side is just as important.

 

If all else fails we are always here to lend you an ear mate. 

Stay safe and well

 

Dave

[Super Mario]

So sorry you feel this way. As you know we are not medically trained and they were just possible thoughts.

You seem to be extremely busy all of the time. Maybe it is time to slow down and see if that helps.

[Catwoman23]

I know I cannot give medical advice. But I have been a primary care doc for Almost  20 years. I see same patients again and again for 12 yrs so I know them very well. It is very different from when people come in from the street to see you once in er or urgent care for one issue. We grow old with the patients and follow them.

 

As much as you think you don’t need help, I think you do need plenty of help. I know psychiatrist have very limited time in this great system and cannot give you much time. Thats why you see a therapist. If one doesn’t work for you, see another. Also you need to have a calm mind and not over think things. Then all the symptoms get worse. 

 

I would also recommend breathing exercises. It focuses the mind to have one pointedness so it is clearer and you won’t create stories. Also recommend this book called finding peace in a frantic world. Psychologists wrote it. Thats my two cents. Psychologists will not help with headache but they will help with stress causing the headache. Goodluck.

[Skippy]

Agree with Super on this one - you sound like you are doing way too much.  I'm 12 years post SAH and if I was doing all that you're doing, I'd have an almighty headache too.  Most of us I think, have been cast aside once we're physically mended - it took a call to the crisis team from husband to get a doctor to look at me over a weekend and the my GP immediately referred me to a counsellor.

 

As for the not being able to take painkillers, I really feel for you there - but these could be stress headaches - have you tried a cold pack on the forehead or the back of the neck?  These work wonders for me when the painkillers don't touch the pain.

 

The counselling - definitely recommend this route - I was all over the place emotionally after my SAH and decided on the counselling route rather than the drug route - cannot tell you how amazing it was to verbally off load my fear, anger and somewhat guilt to someone who was not emotionally attached to me - the ease on the headache front was amazing - literally like a load had been lifted.  Try it, before dismissing it, you might be pleasantly surprised and somewhat relieved.

[Winb143]

I thought I was going to die after mine, first the bleed then ventriculitis, followed by UTI and then Sepsis which kills most people !! A year later another op for shunt which awoke me from my dream world. 
I could have felt sorry for myself but I was so glad to be alive and see my Daughter and husband xx

 

She/Daughter found this site and I came on here and instead of feeling sad, I spoke about my headaches to others, and found there is a life after a Bleed and all the above. 

 

I know you are feeling uptight as it comes out in posts, I think after a bleed they fix us up and off we go.  We have nobody to pass our worries to.  So a site like this is brilliant for talking out anxieties and whatever upsets you/us.  But we are none of us Doctors and we are here to lend an ear to those who need to talk.  

 

Sorry you got no help at all.  We are, none of us Neurologists,  just people who know what others are going through.  Been there got the drill holes in head and scars inside of us we live with every day !!   Our family went through it also !!  

 

l wish you all the best and hope you can get rid of all that ails you.  But if you need to give vent about it we wont give up if you do not also xxx

 

Regards

WinB143 

[Macca]

After such an attack on the very core of your being (for that is what your brain is), a few weeks is nothing in terms of recovery and you will see from reading all the different subjects on here, that recovery is a long, slow process.  You can't just get up and carry on as though nothing has happened. It just doesn't work like that.

 

What you need more than anything is time.  Time for your brain and your body to heal. Time for you to assess and make changes to your lifestyle to accommodate the 'new you.'  This event has happened and you can't turn back the clock.  But you can shape your future.

 

You are right to isolate the feeling of being 'dumped.'  Most doctors have not themselves experienced a SAH, but they know what they have or haven't read. However, they haven't 'lived it' like we (and you) have.  The doctor's role is clinical, not social, and that is where other agencies should have a role, but often don't, and the reasons often boil down to who is going to pay for it.  Probably worse in the US than in the UK, but the existence of this site is an example of the paucity of support post SAH anywhere.

 

The brain injury you have suffered isn't visible and now that you are back up on your feet, others think you are back to normal.  But you aren't.  Probably, to a clinician, you appear to be ok and all the wires are in the right place and that's why they think you are ok.

 

But there is much more to it than that.  There are outside factors such as emotions, headaches, fatigue, families who care, but without the understanding of the consequences of what has happened to them and to you. So you have to tell them.

 

You need to talk to people, to communicate to them that things aren't back to normal, they aren't the same, and that you need more help to adjust.  That includes your family, your work colleagues, friends and your doctors. You need to tell them that you look the same but on the inside you are not.

 

At the moment, it seems you are taking everything on yourself and everyone else is just blindly going on as though nothing has happened.  That has to stop. If it doesn't, you will quickly burn yourself out and then where will you all be?

 

Work out what you can change what, you can delegate, what you can shut out.  Take stock.  This isn't about admitting defeat or that you are somehow  a lesser being than you were before.  You aren't. You are probably more of a person, stronger, older and wiser.  But none of us can go through life without changing.  Some changes are gradual and some come upon us more abruptly, as in this case.

 

You don't need to see a professional necessarily, but just sit down and re-evaluate where you are so you are happy in yourself as to where you sit and then talk to the people around you and make the re-adjustments needed to help you cope with the change your body and brain have forced upon you.  Don't bottle it up, just tell it like it is, like you have done on here and tell those around you that they have to change too, to a lesser or greater degree, because things can't just go on as they have before.

 

Things have changed, circumstances have changed, and therefore the solutions have to change too.  If you feel up to it, that's taking control and is called leadership.

 

That's my view, looking in as an outsider to the situation as you describe it.

 

I wish you luck.

 

best wishes,

 

Macca

[CharlieD]

I just wanted to say Macca I found your advice on this really helpful. A really positive look and practical approach and even though it wasn't for me in this instance something that I needed to read today.

 

I think we all probably at the beginning dwell on not being able to rewind the clock and I think for me it is time I learn to accept that.  I have been going to counselling.  I suffer with awful headaches every day for the 4 months since it happened but when they do go eventually or at least ease I want to be mentally as prepared as possible to move on with my life. 

 

Michelle for me I am on a mix of medication but nothing gets rid of them, if they are especially bad I use a flannel on my head and just lay as still as possible while doing breathing exercises listening to my Calm app.  

[Macca]

Thank you Charlie.

 

I was, of course responding to Michelle but if others can benefit from it that's great. The problem with SAH is that there is no single answer that fits all. We all have to find our own answers, but other peoples answers can help you find them quicker than if we are all left to our own devices.

 

I too suffered headaches, and lying down in a darkened, quiet room, lots of sleep and hydration eventually eased it for me, but it all takes one common denominator - and that is time.  Brains need to re-wire themselves, blood is re-absorbed into the body, and it doesn't happen overnight. 

 

We are lucky to be here after doctors repair the initial damage and it is important, in my view, to give ourselves the best chance of a second chance at life, by not trying to get back to normal. or as near normal as possible, whatever that is (it's different for each and everyone of us) too soon.

 

Our own individual attitudes to life, and the circumstances we are in, dictate our moods because of threats to the way we perceive the future.

 

The way I look at it is, don't see it as a threat, see it as an opportunity to go and see the scenic route in life instead of always trying to go down the motorway (freeway or interstate if across the pond). You never know, you might just enjoy it.  Take others in your life down that route with you too.

 

As long as you can find something to pay your bills, anything extra is a bonus. Money isn't everything. Health and happiness with a family that loves you, is.  That's just me. I came to accept that things were different but it probably took me twelve to eighteen months to fully realise it.

 

I have come a long way, but I would be a liar if I said it was easy. It isn't. It is a long hard slog, but one can get through it with patience and perseverance.  It was mentally, as well as physically  tough.  Now, I am happier than I ever was and enjoy my new life immensely.

 

I think the key is as much about the way you think about things than what you actually do.  Always look at the flip side and then make your decisions.  Two sides to every story. Try and look at what you can do, not so much at what you can't do.

 

It isn't a sign of weakness to change things around, it is a sign of strength.  Weakness is in not changing, for that is what will bring you down, whereas changing will help you grow and to thrive.

 

Best wishes,

 

Macca

[Chris G]

You have received a lot of good advice above, so I will just send you some prayers.

 

Chris