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Tell us what you've found useful as an aid to your recovery (such as relaxation techniques etc.) and discuss natural diet advice/healthy living tips. This is also the forum to post in, if you need or can offer advice on Benefits that can be claimed after a SAH/Stroke
Hello all lovely people again!
Apologies for having gone away for few months now! It was the kids holidays that kept us rather on the trampoline
We got an appmt with the neuro radiologist ( after 2 cancellations) and they have started looking into the options the remainder of the partially occluded aneurysm.
Coiling/Coiling with stent/Clipping eventually.
We are getting the pre-assessment done and the team have mentioned that they will get us a date in October.
The doctor told us that the coiling and stent will need 6 months of aspirin and the renal doctor is reviewing how is it going to impact the kidney function!
Sandeep and I are both nervous(about the procedure) and looking forward to it, so we can try and start moving as we'd like to.
I will post here if i get more info.
i had terrible panic attacks and terrible headaches and mine would come out of no where.
This is not unusual for a person only seven months out. It's not unusual to get tired or frustrated. It's not unusual to feel like you have to push yourself back to normal.
I work and exercise and run the roads and I never feel normal like I did before. It's taken me four and half years to realize I can't work back to normal. Just is not gonna happen.
Try as you may what was is not anymore. But, we all press on and you will too and see changes that make those early days seem long ago.
I am a bit surprised you are not being taken seriously when explaining your symptoms and experiences to the doctors. Whilst we are not medically trained on this forum, have any of these doctors actually carried out standard neurological tests ie checking your pupils and reflexes for example?
Not all general practitioners or paramedics are clued up on bleeds to the brain and don't always connect the two with the symptoms they present. After all, similar symptoms can be caused by a whole lot of other conditions and I have read many a case where a sah had taken place yet was not initially diagnosed.
In fact I was probably one such case. I too felt at the time that I was not being taken seriously and it was only through perseverance after several missed opportunities that I got to have a CT scan. ( I will mention that this was 6 days after the bleed, not years later although who knows, it could have been if it wasn't for me and my family being persistent) I will briefly explain what happened in my case although as you will appreciate, everyone's experience of a bleed on the brain is different. There can be similarities, but it all depends on the area of the bleed and the severity of it.
Therefore symptoms at the outset, recovery and resultant problems can vary quite significantly amongst individuals.
My subarachnoid haemorrhage was almost 9 years ago. I did not have the thunderclap headache which many sufferers describe, I did however start with a headache at the back of my head. Approximately 10/15 minutes later I experienced the sensation of liquid running under my skull. I don't recall any pops as such, but I do remember that my peripheral vision started closing in - the best way I can describe it is that it was like wearing blinkers like on a horses bridle and they were being pushed together at the front until my vision became such that I could only see a narrow vertical slit of daylight between complete darkness on either side.
It was at this point I thought I was going to pass out and die. Thankfully, within a few minutes, my vision corrected itself and being in the UK I rang 999. The paramedic who arrived did not obviously suspect a sah as he left after various checks, leaving me at home. During the next few days I had the most horrendous headache, could not put my chin down to my chest, felt nauseous at times, and just slept for most of the time. I did however ring the NHS helpline, visited a doctor twice and an optician and still no one thought or suggested I needed further investigation.
I knew my head was not right, but why wouldn't anybody listen, or understand my concerns and try to find out what was wrong with me - it was like banging my head against a brick wall - in more ways than one! On the 6th day after it happened my dad rang my gp surgery and demanded I get further investigation asap. That got a reaction! I had an appt made at a neuro clinic in a nearby hospital that afternoon.
At 9pm, after five hours of waiting, I eventually saw two doctors who said 'before we send you home, we'd just like you so see a consultant". The consultant decided to send me for a CT scan and that hospital is where I stayed for the next 11 days. Since having my aneurysm coiled I have at times experienced numbness in my arms, double vision once, multiple episodes of aura of migraine without the headache, fatigue, brain fog, memory issues etc. I do not have headaches or nausea though.
It maybe the stress and worry of it are causing some of your symptoms, but if I were you I would keep on trying to get referred - although I would check if and when you get to the stage of a referral to ask whether a CT or MRI would be more appropriate.
It may be worth getting your blood pressure checked regularly if you don't already do that.
Wishing you all the best,
I have ZERO problem with paying for an MRI or CT scan out of pocket. My only issue is I can't get a doctors referral. I strongly believe that I have had a bleed that started 5 years ago, and the symptoms have gotten more intense since then. I won't sit here and name them all and try to convince you. I'm nauseous for a large portion of the day, have had muscle spasms in various places last for days straight, feels like it takes a few seconds to process whatever I am doing/seeing..change in gaze (the way my eyes look). I have good vision but I have this feeling like "I can't see". A tingly/burning bubble sensation in the right side of my head almost always, a tightness in the right side of my neck that isn't muscular, discomfort swallowing on the right side of my neck.
In 2012 I felt a very subtle pop type of feeling in the right side of my head and began to loose conciousness, layed down and didn't go fully unconcious, but thought i was going to die for some reason. Ended up regaining conciousness then as I was walking home I felt the sensation of cool water pouring on the inside of my right head and within seconds the whole perfect right side of my body became numb, but not paralyzed...at this time I saw a very very VERY bright blueish white light FLASH like an aura around me. This didn't hurt but it was extremely peculiar and obviously a serious medical issue. Ever since then I've battled off an on with all the symptoms i've read described by SAH survivors. Most notably Apathy, feeling extremely weak, even trouble breathing, like I'm not getting enough oxygen
I have been to two different doctors years apart and have been to the ER (by choice/walk in) 3 times since then and I have never felt I was taken seriously. When the topic of a CT scan comes up the answer always relates to my insurance, which is medicaid. I am still able to workout and I am a healthy looking male, but something is very wrong with my head and I am concerned for my life, honestly. This has been something I have dealt with from age 18- but the numbing event i described happened at age 19 and thats when things got realer for me.
I DON'T know what to do. I CAN pay for an MRI/CT scan but I CAN'T seem to get a refferal and I've called centers near me (upstate NY) and they all say I need a refferal...because I guess a doctor knows my body better than I do. This is killing me and im 25 years old. Doctors don't take me seriously. I wait for months to pour out my heart in front of a medical professional. I explain my experience in vivid detail and I haven't been heard. I am more concerned about becoming disabled than I am dying.
To wrap this up (and sorry for my frustrated tone)
Has anyone here had issues like this? How did you deal with them? I feel unheard, this has affected my life so much. The past two days I feel nauseas almost all day long..and have been having trouble with balance. I feel like I must commit 100 percent of my attention to driving to be safe. However I have no obvious outward symptoms other than my eyes looking distant and the twitching that is sporadic.
Thanks Clare... I definitely agree. I'm calling tomorrow to let them know. It's strange how subtle things have changed but doctors refuse to acknowledge that it was possibly from the bleed. Frustrating!