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MelJam    5

I had a SAH on the right side of my brain 2 months ago. With a 100% blockage on the left side . This has been the worst nightmare.

 

At least I am still alive, but the pain I continue to have is unbearable. Not only the migraines, but different pain in my legs and arms.  

 

No one seems to be especially concerned with the pain I am in. After the first angiogram in the hospital, they kept me in neuro ICU for 5 days. I had a second angiogram a 2 weeks after. The neurosurgeon said he wants to put in a stent and that he thinks this needs to happen sooner than later. 2 weeks later we go to an appointment, he states he wants to put me on Plavix, then he will schedule the angioplasty.  

 

I return a month later with no further tests and he tells me he is not doing the angioplasty (with no real explanation).  The brain spasms(vasospasm) kept for about a month. I think I still have them. Best way to describe is squishy head. I have episodes where I lose balance, my vision will have a vibration effect, bursts of white stars where I almost fall.

 

I take 10mg of Norco and the pain still will not go away.  However, the neurosurgeon said the migraines have nothing to do with with the SAH and gave me Fioricet ( which does not work).  I had migraines before, but nothing like this. Not to mention, these are WAY different than any migraine prior.

 

I can't work full-time. I am so sensitive to all light, especially the sun. I cannot look at my computer at work for more the 4-5 hours.  I sit in my home after work crying half the time. I am scared to do anything strenuous or exciting, bending over hurts my brain(blood rushing), being outside in full sun hurts my eyes(even with sunglasses on). I have had about a total of a week relief(combined days) in 2 months from migraines.  

 

Hopefully, this new neurology appointment June 1st will come up with a treatment plan.  Can anyone help with any suggestions?

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subzero    7,145

Good morning MelJam and a warm welcome to BTG.

 

So glad you discovered the site. While we do not give medical advice, you will receive invaluable support from the members who share their different experiences. There is a wealth of information from threads by members who have  openly shared their experiences as they have dealt with their recovery from SAH.

 

You say `at least I am still alive`, and you are right ... SAH is a life threatening event and many unfortunately do not survive.

 

Your brain has suffered serious trauma, and it needs time to adjust and make corrections as it tries to deal with your everyday demands on it.

It is only two months since your SAH. Time to recover is so important. You need to accept that trying to get back to life as it was as quickly as possible will result in frustration, fatigue and even depression.

However busy your previous life style was... now you need to accept that your body and brain need that time

.

Do you have family to support you in these early months?

 

It is important that you discuss your conditiuon with your employer. Return to work in most post SAH cases requires a phased return after three to six months.

How you approach your return to work has a tremendous effect on your recovery.. Push yourself too hard and your brain and body will not cope. You will not win this fight to get back to normal. Your brain needs your respect ... please treat it with respect.

 

Are you resting sufficiently, and keeping hydrated by drinking plenty water?

 

In these early weeks, both you and your consultant are finding out how you have been affected by the brain trauma. They need to help you understand your pain and help you find relief. Keep in touch with them until you get the help you need.

 

I wish you well as you deal with your recovery. You will find that you are not alone as you find your way around the BTG site.

 

 

 

Subs

 

 

 

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Winb143    5,603

Hi Mel,

 

We know what your going through and this site can help you as you know you are not alone.

 

I came on here after my Daughter found it while I was in cuckoo land.  I had SAH 4 followed by Ventriculitis, UTI, then Sepsis. a year later I had a shunt put it and it bought me back from my Hydrocephalus head and cuckooland.  

 

It is scary what has happened to you but you are here and the bad heads will subside.  Give yourself time and take it slower than before.

 

I cannot jump out of bed as I did before.  I have to swing my legs out still sitting and then get up.  Everything is slower paced after SAH xx

 

I came on here and saw people laughing and joking which gave me hope and if you have a worry or need to give vent etc.  It all helps

 

No Stress my surgeon said so I break into song when down but only happy ones  xx

Look for "A letter from your brain "  it tells you what you and brain has been through !!

 

I will close now as it looks like an essay lol

 

Keep happy thoughts

Winb143..  I started walking after my Brain injury team said I wouldn't walk xxxx Keep well and smile when possible  

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MelJam    5

Thank you Subs!!!  I do have a great support system. My job does have me scheduled half days and tell me if you feel like you can work longer, I am more than welcome.  That is really the only support they offer.

 

It seem all I do is sleep. However, it is only a few hours at a time.  My body got use to a 4 hour sleep schedule from being on nimodipine for 21 days.  First 3 weeks I could barely walk. The pain from my body trying to absorb the blood was about as bad as the rupture.  

 

More than half the time I am home alone. My husband works out of town during the week.  That is a bit frustrating, but he has to work.  I have no children, so fortunately, that helps a lot.  This also has my blood sugar unmanageable.

 

My stress level is well beyond what it should be.  My husband is about to go through cancer treatment(basal cell carcinoma, that has spread to his internal organs). So his income is is about to be minimal. This is why I am pushing myself to work more. 

 

Depression has set in. No doctors seem to care about that. Which get frustrating.  Friends ask how I am. I tell them I am ok.  It gets tiring hearing that someone is not ok all the time. A lot of people do not continuously want to hear bad news. After awhile, they just stop asking and avoid talk to me. Which is another stress trigger. My bosses have stopped asking.  Especially after I told them the doctor is not doing surgery.  Oh, and I am only 37!!! 

 

Thank you again!! It is great to know I have found an online support system.  

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MelJam    5

Thank you Winb!!

Other than my body absorbing the blood, I have had no physical lasting effects.  I mean pain of course, short term memory loss, stumbling over words, and lost in mid sentences.  These pains in my arms and legs have me worried about blood clots.

 

However, considering what happened, I do know exactly how lucky I am.  Sometimes I feel like I should not be complaining. Knowing how everyone else that has had a SAH has severe disabilities.

 

Again, thank you Winb!!!

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Winb143    5,603

 MelMel,

 

We are here if you need to give vent, as you have it hard what with hubby also.  So I wish you all the best.

 

Get the worry of clots in legs sorted as you have a lot of stress at the moment. 

 

On here you do not have to say you are okay when on a downer, have a moan we are entitled to it especially You with hubby ill also.

 

Hope all goes well for you both xxx

Love

Win xxxx  I'll say have a good weekend, but if you need a moan go ahead xxxx

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MelJam    5

Thank you so much Winb!! It is such a relief to be able to talk with people that understand.

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MelJam    5

Hello Winb,

We got really bad news for husband.  He will be going on Erivedge, which is chemotherapy for 10 months. And even after that, looks like he may still lose his eye. I know this is the time to be supportive of him, but me being so stressed has my head pounding and none of the meds work to make it stop. In front of him, I am strong, but alone, all I can do is cry.  And I work at a call center, so I have to act all happy.  I just thought I had a high stress level with my issues, but seeing my husband going through this is no comparison.  Again, thank you for listening to me vent!!!!!!

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Winb143    5,603

So sorry to hear about Hubby Mel xx and the Stress it is causing you and hubby

 

Vent away you need to give off steam, we all do xx

 

You must feel so awful and if I had a magic wand I'd wave it, so instead I'll say a prayer to my Mum tonight.  When people are down I always turn to my Mum who died in 1976.

I'll say 2 prayers for you 1 to Mum and 1 to upstairs.  I wish you all the best Mel xxxxxx Hope hubby gets better  xxxxxx Take care of you as without you Hubby will be lost.

 

Good luck and keep in touch when down or anytime xxxx  Remember to look after yourself xxxxx

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Louise    1,329

Hi there

 

warm welcome to the site glad you found us.

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kempse    1,810

Hi there, a warm welcome to BTG. 

 

I'm really sorry that you are going through so much at the moment - no wonder you are tearful, it's an awful lot for you to have to deal with.    Recovery from a sah is difficult enough without the added stress you have with your husband and all the pain you're in.  

 

I do hope your appointment on 1st June proves to be helpful - perhaps make a list beforehand of all the issues and concerns you want to discuss, so that you don't miss anything. 

 

I really do empathise with you having myself endured many stressful events whilst recovering from my sah.  It can be really tough so I'm surprised you say no doctors care about depression setting in - they really ought to.    

 

It is very early days in terms of recovery for you and a lot of what you describe is very common and I do believe that getting plenty of extra sleep is the best way for the brain to repair after such a trauma, so try not to be concerned about sleeping too much. 

 

Wishing you all the best,

Sarah

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MelJam    5

Hello Sarah,

Thank you soooo very much. I also thank you for the suggestion for list.  I have been thinking about doing that, but it slips my mind.  That is another issue. I was everyone's reminder of everything.  Now I can't even remember basic things for myself. 

I am going to speak with my primary physician about my depression.  I just hate to go on more meds. On a brighter side, I am getting injection therapy for my lower back, so that will take a lot of pain away (hopefully).  It has taken 2 months for the neurosurgeon to approve being off blood thinners.

How long ago did you have your SAH?

Again, thank you very much Sarah!!!!!

 

Melissa

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kempse    1,810

Hi Melissa,

 

I'm pleased you are getting injection therapy - like you say, hopefully it will work and make things a little easier for you. 

 

Yes, the remembering aspect is frustrating - again something that affects most of us to some degree.     I used to set up a list on my phone and add things to it as and when I thought of them because I knew I would forget.  If you can take someone with you to your meeting, it's helpful as it can be equally as hard remembering everything you've been told when you get home.  

I think the most embarrassing thing I forgot in those early days was to collect my son from school!

 

I had my sah 8 1/2 years ago from a ruptured aneurysm which was coiled. I was 47 at the time. I too suffered severe vasospasm although I had no knowledge of this at the time.  I had more coils put in a year later and because the aneurysm has a wide neck and another smaller aneurysm was discovered at the time, I am still monitored every year by MRI scans. Last year I was told it had grown slightly and I could either have an angiogram to see about a possible stent and more coils, or wait a year and be scanned again. I chose the latter and have just had the results of that further scan. The letter said "stable appearances and another scan will be arranged in 12 months" Phew!

 

With reference to your point re migraines - I have never had one in my life, but ever since my sah I have suffered with the aura of migraine. Thankfully I don't have the headache, but since the very first episode of the aura was while I was in hospital at the time of my sah and I have had well over 100 episodes since (I kept a diary of it), I personally do not believe that the two are not connected in some way.

I was prescibed atenolol for it and they have definitely reduced the frequency of these episodes since being on it for the past 7 years.

 

This forum group is an excellent source for anyone who has had the misfortune to suffer a sah - I don't think there is any better aid to recovery than being amongst those who have travelled that path.  There are also two other excellent uk based websites that supply a whole host of useful information including fact sheets that can be downloaded - these are 'the brain and spine foundation' and 'headway' - google will find them!

Take care,

Sarah

 

 

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