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MelJam

New SAH patient

8 posts in this topic

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

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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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