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On medicaid and doctors won't listen


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Hi,

 

First of all I have not been diagnosed. That being said, I am around 95 percent sure I have some kind of brain bleed. This is based on a lot of research, learning about my symptoms, how its effected me over time. ETC. 

 

I'm 24 years old. When I was 19 after eating dinner (stuffing myself) and smoking a mild drug, I began to rapidly lose conciousness, I quickly laid down, and didn't fully lose conciousness. I think the lying down part helped. This lasted for about 1-3 mins. I was fading away, lay down, thought to myself "am I going to die right now", and then gradual regained consciousness.

 

After this I walked to where I was staying at the time and on the walk the whole Perfect Right side of my body "lit up", in this...numbish, electrical, tingly, pins and needle x10 like sensation starting from my head. I could feel it start from a specific part in the right side of my head, then going down rapidly affecting my perfect right side...I say perfect right, because I mean if you drew a line down the middle of my body that is perfect...EVERYTHING "lit up". I also saw a very bright bluish flash of light that seemed to surround me. It didn't cause any paralysis. I was standing when it happened. It also didn't immediately affect my consciousness.

 

^I think what happened here, and I am guessing, but it seems like that was the original bleed, covering a portion of my brain and then affecting the right side of my body^

 

There was something that happened a year or so before that, that I feel is the Root. When it began. I was working out and during bench pressing, got a really sharp, specific headache on the right side of my head. This kind of thing had happened before, yet something was more prominent about this situation...because after it happened. I rapidly began to experience muscle wasting on the right side of my body that seemed to affect some muscles more than others, namely the neck/trapezius area on the right side. I no longer felt I could workout, it didn't feel right physically and each time I attempted to, I would get minor flu-like symptoms the following day...the feeling you get when your about to get sick but don't. 

 

The biggest and most consistent symptom that followed this even was right-side neck stiffness that feels non-muscular. Almost like I can feel a string from the base/middle of the right side going up into my head. It used to make turning my neck very uncomfortable, now it doesn't so much. 

 

I didn't notice any congnitive difficulty till about 6 months to a year later...it was quite elusive. Not obvious, I just felt different, more apathetic. 

 

Fast forward to now. A lot has changed since then, its been up and down but mostly down. I was able to get back into working out for a while...Now I get mentally tired very quickly when working out and there has been a NOTICEABLE cloudiness/cognitive difficulty that can fluctuate somewhat throughout the day, however it is always there and now it is noticeable. It seems to mostly deal with short term memory and ability to interpret what I am percieving. It hasn't prevented me from much and isn't outwardly noticable. Its also caused a sense of mental tiredness and apathy.

 

There have been times where no matter how much sleep I got I would feel like falling asleep mid day. And these days, its most uncomfortable/noticable for me at night. As soon as I have my last meal it just all hits me at once like clockwork. Things are cloudy, I have trouble focusing, etc etc.

 

There are mannnnny more details that would better explain the situation and events that marked things getting worse, such as waking up with a feeling of a knot on the right side of my throat I couldn't "swallow". Also my eyes losing focus on their own, and my eyes physically appearing different. 

 

Early on, I sought medical attention through medicaid and have been to the ER a few times within the past 8 or so months. All those times, I was not able to get a scan because there were no outward visible symptoms. "I know what sick people look like and you're not one of them". One thing I've realized about this type of condition is its High Risk yet isn't easy to detect. Many people die from stuff like this because they can't get a scan early on because they are denied.

 

To re-itterate. I have not been diagnosed, I am however, close to POSITIVE my issue is of the brain-bleed/anyuerism nature. There have been times where I truly felt I was going to die. However I never experience the "worst headache of my life".

 

I do, however, get headaches on the right side in a very specific spot that come and go....most notably after physical exertion, holding my breath, pressure related things. Sometimes they might just come as "brief stabs" that last only seconds. Another symptom I experience is right side neck spasms that also seem to happen in the lower jaw area. As well as this acid reflux feeling that is specifically only felt in the right side of my neck. It lasts only a second. Feels just like acid reflux does. Another symptom that is off an on is face spasms, really minute and specific that happen in really specific areas of my face, such as a portion of my brow or lip. They can only be seen outwardly from close up. Never had facial droop or any of that. 

 

So I made this post just to get feedback. I am not asking for an official diagnosis and I am still seeking medical help. For a while I was completely shattered from my previous experiences with doctors. Feeling that I had no hope and that all they would do is tell me to take Ibuprofen or whatever else. I have no obvious outward symptoms, they just think I am a hypochondriac. But I need to try to seek help. So I will. 

 

Another thing is, almost a year ago I started drinking nightly. I was never a drinker, never was drawn to it. When I smoke weed now I feel like I am literally flirting with death. I think this is due to the vasco-constriction and dilation that it causes..as well as the increase in blood flow to the brain. My body is just saying NO to weed...and I think it played a part in the event I had happen at 19. I only started drinking out of fear of my condition and feeling hopeless. Now I only drink beer...and I have grown a liking to it because it seems to make the symptoms go away temporarily and believe it or not, makes me feel less cloudy mentally. I don't know why. I never get hangovers. There are no obvious signs of it making things worse, even though I am sure it is. Also, I don't react in a way where one beer feels like four. 

 

I know its bad. I know I shouldn't be drinking. I am truly working on it. There is little motivation to drink aside from me feeling the alleviation of symptoms and anxiety. 

 

I know I need to be scanned and officially diagnosed. It may seem ridiculous that I have waited so long, however It is due to irrational thinking. Depression, feeling hopeless, not caring etc. 

 

Thanks for hearing me out. 

 

Zach

 

 

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Hi Zach,

 

Welcome to BTG.  There has been a delay in approving your post due to its length and content.  I and the rest of the team have considered it very carefully.  Please bear in mind that this is a site for SAH and stroke sufferers and their carers.  I have edited it very slightly to add spacing and punctuation and altered a couple of words without losing the meanings you are trying to convey.

 

You state you have not been diagnosed but are fairly sure you have suffered a bleed of some kind.  We cannot give medical advice as we are not doctors.  What we do know is that bleeds on and around the brain are life threatening, so we would advise you strongly to seek urgent medical attention to correct it.

 

However, there are a number of other things in your post that concern me.  Without wanting to sound like your parents, your use of other substances in your lifestyle cannot be good for you.  So it is good that you have refrained from the more harmful substance, but you have replaced it with another, alcohol.  This cannot be good for you, especially as you are lacking that diagnosis and you may be doing yourself more harm than good.

 

Some of the experiences you describe are indeed possible consequences of a bleed and are consistent with them, but they could also be as a result of your misuse of those other substances.  The combination of all three may lead to interactions between them that produce unexpected side effects which is why it is imperative, in my opinion, that you seek urgent medical attention from the appropriate medical professionals.

 

You are not hopeless, you do care, or you wouldn't have come to us to ask for advice.  So the first step is for you to seek that medical help.

 

Once you know for sure what you are dealing with is when you can actually do something about it.  So start thinking positively and resolve to get the matter sorted.

 

Delaying can only lead to more uncertainty, despair and a general deterioration in your condition.

 

Getting a diagnosis could be the first proper step in getting your life sorted and leading to looking forwards to the rest of your life, and all the positive things you can do with it.  Your case has been on my mind all day Zac, and I've got up in the middle of the night to answer you.  So please go, stop dithering and go and get yourself checked out.

 

I look forward to hearing from you.

 

Best wishes,

 

Macca

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Hi there zach can I just say people who drink heavily are more likely to have a spontaneous bleed on the brain and the smoking of weed is more likely to make you think you have as the drug worsens any paranoid feelings you have xxx

 

Hope you get a diagnosis but Drs will not take you seriously whilst you are drinking and smoking that, you need to stop both xxx

 

Sorry if that sounds harsh but I have seen how Drs treat alcoholics as my husband is one and she (Dr) used to look at him like he was a waste of space. I left him in the end xxx

 

Hope things work out ok for you xxx 

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Hi Zach

Please cut down on the alcohol gradually.Its just if your drinking heavily stopping immediately can bring on a seizure.

Be careful as often people who drink to excess can fall bang their head causing a cerebral bleed or haematoma.

See if your local neurological hospital have clinics for headaches or migraines a lot of them do, your Gp can refer you.

 

Take care and look after yourself 

 

ps As well as having had a recent SAH, I work in healthcare 

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  • 6 months later...

Hi everyone,

 

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

Zach

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Hi Zach, 

 

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,

Sarah

 

 

 

 

 

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  • 2 months later...

First, quit going to the er!! the e stands for Emergency. Part of your problem is you are going to the er instead of a good family practice doctor. You are going to the wrong place. A good family practice doctor will send you for an mri. Publicaid pays for mri's.

 

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  • 5 months later...
On 25/09/2017 at 18:10, kempse said:

Hi Zach, 

 

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 be

 

 

 

-------------

Really late reply- but just wanted to say thanks so much for sharing your experience and feedback. I'm finally getting an MRI in two days

 

a big thanks to everyone who responded

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