Undiagnosed sah ?

[DaVinc1]

Hello, I am 21 years old and I have lost my will to live. I have a very low pressure of 100/60 and lower. A year ago, after heavy stress, my blood pressure jumped to 200/160 and 200 heart rate. It started with dizziness, after a week I had the worst headache of my life. Later there was numbness in the face and leg, neck pain and squeaking in the ear all on the right side of the body. Consciousness was also disturbed.

 

After 2 weeks, I called for an ambulance. They did not take me to the hospital because they found it to be due to stress (in my country the quality of health care is very low). I was so tired in the 3rd week until I did a CT of the head. The results were good but I read that SAH is no longer visible after 3 weeks. So I went to the hospital where I was refused a spinal cord check.

 

I went to the neurologist who ordered the MRI and MRA of the head angio. The research showed nothing wrong. I'm fed up with this life lately, headaches have intensified again and the numbness of the squeaking in my ear is 24/7 throughout this year. My taste has changed too and I feel strange smells. I was lying in the neurological ward where they found nothing again and they didn't take my spinal cord fluid.

 

I am asking for help. Is my life still in danger when I perform so many tests? Im sory for any mistakes i made but I'm not a native speaker

[Eruditedk]

Hi DaVinc1

 

I am so sorry to read your post and truly wish you can get some help...... it is good you reached out to this group I am sure you will get some good advice...

 

I am not medical and can't give any medical advice and am relatively new to the world of the SAH as just 5 months from suffering mine but your symptoms sound serious and it's vital you get some help..

 

You do not say what country you are in or much about your status and seem very young to be dealing with this alone.....

 

Do you have family or friends that are in a position to help you, with care or being honest and direct, as I have lived in several countries and know how the world works, what it may come down too is access to money?

 

If you are in a position financially then I suggest you go and immediately get specialist medical consultation and help..

 

If you don't have money and the government  health care system is poor where you are it is going to be much more difficult but your life is valuable so do everything you can to get some help... beg, borrow, use a "go fund me" page, email / write to celebrities or well known philanthropist, charities etc... find a way to get someone who can give you proper medical advice however you can

 

And find someone who can support you and give you care, family or friends if you have them close, or if you have money pay for help and care....

 

Don't be alone and don't give up....I have had an amazing adventure and for 48 years and 361 days, (my SAH came 4 days before my birthday) though some days were rubbish and painful ...most were a brilliant adventure and all I want is to be able to continue to have my life and journey in good health...

 

Life is awesome, you can make it anything you want it to be.... please try to get your health taken care of and know what you are facing..

 

All I can say is good luck and I am sure as said before members of this group will give you good advice ...

 

Take care D x 

 

[Kathy]

Dear friend, I am so sorry for your suffering.

 

We cannot give medical advice. I am in the States so I do not know the emergency procedures and treatments for your location. We are told in my country to keep pursuing an answer. Maybe that would mean traveling to another clinic? However, that may not be an option.

 

That you are alive if it was a brain bleed is a miracle itself. It takes time for your brain to heal. You can read posts on this site about what helped others after an initial “worse headache ever” experience. I can tell you what helped me. Drink lots and lots of water. My headaches were better with my head elevated when in a reclining position. Sleep as much as you can.

 

I had a massive brain bleed so they are able to see the area on MRI even three years out. I also had hydrocephalus. I did have a spinal tap early on that confirmed SAH. It does get better. I would say 6 weeks post bleed I felt stabilized. Then, it was gradual improvements as the days went forward. It took about a year before headaches subsided significantly. I remember celebrating when I could sleep flat again!

 

Today, stress and change in weather (barometric pressure) can bring on headaches. I have difficulty with memory and fatigue and I do have more mood swings (irritability) since the SAH stroke. My Christian faith keeps me pressing onward and choosing to live with gratitude and determination.

 

I have also learned from dear ones on this site that singing helps (it is amazing how lifting your spirit in song heals your mind and soul) and humor (we find a new normal that has its quirks but also immeasurable joy) and acts of kindness (reaching out to others puts everything in perspective).

I have read that sometimes the exact location of bleed is not found and my 3 angiograms did not help locate aneurysm. The neuro-surgeon said they believe an aneurysm imploded on itself and closed off. Please know we care. Where there is life there is hope.

 

I am on blood pressure medications now. I too had very low blood pressure until the SAH. Now, it must be regulated with medications. Again, this is a community that understands and is here so you can ask questions and vent. Don’t give up dear friend. Your life matters. Sending my prayers and a big hug. 
 

By the way, some of what you say sounds like Covid variant symptoms. Have you been tested, vaccinated? 
 

[DaVinc1]

Hi Eruditedk 

 

Thank you for your reply. 

I have family but they dont belive me, they say that im mentaly ill. I have a job (physical one) and my symptoms bothering me in work but i dont want lose this job because its a well paid job. So i can go to neurologist privately. But they think that there is no way that i have sah.

 

Im struggling a lot because i dont believe them how they can know that i dont have a sah in the past when no one want to check my lumbar fluid, it really hard to do lumbar puncture privately in my country (Poland) because they only do this kind of tests in hospital and as i said there is no chance for me to do lumbar puncture here.

[DaVinc1]

55 minutes ago, Kathy said:

Dear friend, I am so sorry for your suffering.

 

We cannot give medical advice. I am in the States so I do not know the emergency procedures and treatments for your location. We are told in my country to keep pursuing an answer. Maybe that would mean traveling to another clinic? However, that may not be an option.

 

That you are alive if it was a brain bleed is a miracle itself. It takes time for your brain to heal. You can read posts on this site about what helped others after an initial “worse headache ever” experience. I can tell you what helped me. Drink lots and lots of water. My headaches were better with my head elevated when in a reclining position. Sleep as much as you can.

 

I had a massive brain bleed so they are able to see the area on MRI even three years out. I also had hydrocephalus. I did have a spinal tap early on that confirmed SAH. It does get better. I would say 6 weeks post bleed I felt stabilized. Then, it was gradual improvements as the days went forward. It took about a year before headaches subsided significantly. I remember celebrating when I could sleep flat again!

 

Today, stress and change in weather (barometric pressure) can bring on headaches. I have difficulty with memory and fatigue and I do have more mood swings (irritability) since the SAH stroke. My Christian faith keeps me pressing onward and choosing to live with gratitude and determination.

 

I have also learned from dear ones on this site that singing helps (it is amazing how lifting your spirit in song heals your mind and soul) and humor (we find a new normal that has its quirks but also immeasurable joy) and acts of kindness (reaching out to others puts everything in perspective).

I have read that sometimes the exact location of bleed is not found and my 3 angiograms did not help locate aneurysm. The neuro-surgeon said they believe an aneurysm imploded on itself and closed off. Please know we care. Where there is life there is hope.

 

I am on blood pressure medications now. I too had very low blood pressure until the SAH. Now, it must be regulated with medications. Again, this is a community that understands and is here so you can ask questions and vent. Don’t give up dear friend. Your life matters. Sending my prayers and a big hug. 
 

BTW, some of what you say sounds like Covid variant symptoms. Have you been tested, vaccinated? 
 

 

Hello thank you for your reply, sorry to hear that, but im also Christian and my faith is also strong. I have suicidal thoughts since my symptoms started, i think that my faith in God is keeping me alive. I really want to know what happened to me one year ago.

 

The fact that im still undiagonsed is killing me inside, i would be happier if my neurologist would say something more than 'you are to young to have SAH” or other stupid excuses.

[Super Mario]

36 minutes ago, DaVinc1 said:

 have suicidal thoughts since my symptoms started,

Whether or not this will work or not I don't know. In the UK we have a charity called The Samaritans who are on the other end of the phone to give you support for those thoughts.

I have taken this off Google so please try to use the numbers provided for The Samaritans.

 

" Freephone number to call from Poland is: 800 012 274. No matter what someone's reason for calling is, Samaritans offers a space to explore how they are feeling, in their own time and their own way."

[Tina]

Hello DaVinc1  

 

A very warm welcome to BTG. Your English is amazing !

So very sorry you have had to go through all this and so young, bless you. As Dan & Kathy have said in their lovely responses to you, dont give up. Where there is life there is hope. Sending hugs to you.

 

Sometimes they never find a cause. I really hope you get some answers soon. Stress can cause all kinds of problems to your health. Can you avoid what was stressing you so badly ? I am glad your faith is giving you comfort.

 

Have you tried mindfulness to try and relax, it has helped a lot of members here with their recovery. Here is a link to some posts that may help you:

 

https://web.behindthegray.net/search/?q=mindfulness&quick=

 

The lovely Super Mario has suggested above and found you the number, please call the Samaitans as talking really helps too.

 

Take good care and rest up as much as you can.

Keep in touch

Tina xx

 

 

[DaVinc1]

29 minutes ago, Super Mario said:

Whether or not this will work or not I don't know. In the UK we have a charity called The Samaritans who are on the other end of the phone to give you support for those thoughts.

I have taken this off Google so please try to use the numbers provided for The Samaritans.

 

" Freephone number to call from Poland is: 800 012 274. No matter what someone's reason for calling is, Samaritans offers a space to explore how they are feeling, in their own time and their own way."

 

Thank you very much.  I already made a call to one of the best psychiatrists in my city and I have an appointment. I hope it will help with my mental problems.

[DaVinc1]

15 minutes ago, Tina said:

Hello DaVinc1  

 

A very warm welcome to BTG. Your English is amazing !

So very sorry you have had to go through all this and so young, bless you. As Dan & Kathy have said in their lovely responses to you, dont give up. Where there is life there is hope. Sending hugs to you.

 

Sometimes they never find a cause. I really hope you get some answers soon. Stress can cause all kinds of problems to your health. Can you avoid what was stressing you so badly ? I am glad your faith is giving you comfort.

 

Have you tried mindfulness to try and relax, it has helped a lot of members here with their recovery. Here is a link to some posts that may help you:

 

https://web.behindthegray.net/search/?q=mindfulness&quick=

 

The lovely Super Mario has suggested above and found you the number, please call the Samaitans as talking really helps too.

 

Take good care and rest up as much as you can.

Keep in touch

Tina xx

 

 

 

Omg im speechless, this is my first time on this kind of forum and i really appreciate all of your answers. All of those answers made me feel better. I want to thank all of you from the bottom of my heart.

[Eruditedk]

Hi DaVinc1 

 

I think SuperMario has just given you some wonderful advice .....talk to these guys at Samaritans and look for other Poland based support and advice groups, here in the UK we have the Citizans Advice Bureau ...they should be able to help and steer you into people that can help...

 

Another thought as a strategy if you are in a position to see a Neurosurgeon by paying ....

 

Change your own thinking, what you need to know is how to treat your situation now ..... not what happened a year ago but exactly now and moving forward......

 

write down the symptoms, dates sensations, pain, feelings and how they were....but Just the facts and dates...

 

Provide this to the New Neurosurgeon before your consultation and when you see him don't give any indication you even know what a SAH is.... I truly didn't when I was admitted so this is quite easy.. just tell about the headaches, pains etc as they truly were...

 

And from what you have said give honest details of your symptoms as they are now so the Neurosurgeon can try to give a fresh diagnosis. 

 

If he suggests tests  scans etc then pay for them and have them done. No need to say you have had them before...

 

Your target is a fresh second opinion.... 

 

What is important is your health not being right...

 

So have them treat correctly how you are now, don't wish a SAH as the final diagnosis especially if it's a No Cause SAH as the torment of that unanswered diagnosis is horrible belive me...

 

As said I think SuperMario advice was the best and I hope you understand my strategy for you to try... the truth is the name of the illness is not important......getting the right treatment for where you are now is...

 

Take care and good luck... D x 

[DaVinc1]

1 hour ago, Eruditedk said:

Hi DaVinc1 

 

I think SuperMario has just given you some wonderful advice .....talk to these guys at Samaritans and look for other Poland based support and advice groups, here in the UK we have the Citizans Advice Bureau ...they should be able to help and steer you into people that can help...

 

Another thought as a strategy if you are in a position to see a Neurosurgeon by paying ....

 

Change your own thinking, what you need to know is how to treat your situation now ..... not what happened a year ago but exactly now and moving forward......

 

write down the symptoms, dates sensations, pain, feelings and how they were....but Just the facts and dates...

 

Provide this to the New Neurosurgeon before your consultation and when you see him don't give any indication you even know what a SAH is.... I truly didn't when I was admitted so this is quite easy.. just tell about the headaches, pains etc as they truly were...

 

And from what you have said give honest details of your symptoms as they are now so the Neurosurgeon can try to give a fresh diagnosis. 

 

If he suggests tests  scans etc then pay for them and have them done. No need to say you have had them before...

 

Your target is a fresh second opinion.... 

 

What is important is your health not being right...

 

So have them treat correctly how you are now, don't wish a SAH as the final diagnosis especially if it's a No Cause SAH as the torment of that unanswered diagnosis is horrible belive me...

 

As said I think SuperMario advice was the best and I hope you understand my strategy for you to try... the truth is the name of the illness is not important......getting the right treatment for where you are now is...

 

Take care and good luck... D x 

 

Thank you, i visited a lot of neurologist and neurosurgeons and they said the same thing all over again „you are to young to have SAH”. I know its hard to imagine but in my country doctors treats patients like item not like human.

 

And i know what SAH is because my grandfather died at the age of 45 because of subarchanoid aneurysm. But still im glad that someone care about my health, even if never met. Thank you soo much for that.

[jess]

Hi there I would say the symptoms are all to do with anxiety and stress you have had lots of tests and have all been negative 

 

Please don't be offended but all your symptoms I have had since my sah and its due to the fear and anxiety of having another one and with your granddad having one it would make that fear worse in you 

 

My blood was showing after a couple of years from a leak as when I had the major bleed the surgeon could see it on the scan I got numbness daily it was caused by anxiety my blood pressure would go up mine is normally around 100/90 sometimes lower sometimes a bit higher that can cause dizziness and heart to race which could then cause all those other symptoms 

 

Try to remain calm drink cold water sipping it breath in through the nose and out through the mouth slowly and tell yourself you are going to be fine so sorry you are having these symptoms hope they ease soon

[Daffodil]

Hi there

 

I hope you are gaining some comfort and confidence from the replies that regardless of what has happened that caused symptoms then and now,  it is about what can be best done moving forward to be able to make sure you are ok now.

 

We cant give medical advice but asking your doctors for blood tests would tell you if you have any deficiencies that might be making you feel worse and which can show up after any brain event, as can just keeping your own eye and diary of daily blood pressure and taking action if that’s outside normal ranges.

 

Do call and talk to someone like Super Mario advices.  Worry eats away at you and combined with knowing the risk of SAH from your grandfather’s history means that you have rightly had concerns about this event that was unexplained. 
 

Jess is right , the effect of blood on the brain would show in an MRI but you have clearly had an event which has rocked you, made you feel incredibly unwell and worse, nothing was found leaving you with a massive uncertainty. 
 

You are doing some great things right now, you are asking for help, you are proactively trying to get help and support so please continue that road no matter how hard, and we are here to help, you just have to post. 

 

Rest. Be kind to yourself. That’s a good place to start 

daff 

[Louise]

Hi there

 

just wanted to say Hello and welcome to the site glad that you found us. Wonderful replies...

 

SAH doesnt know age anyone can have one....

 

We all know what and how you feel, I hope the site helps you in many ways.

 

take care

[DaVinc1]

Hello. I would like to thank you very much for all the answers. The headache has been bothering me lately. I called one of the best neurologists in Warsaw. He told me that a subarachnoid hemorrhage was almost impossible in my case because I didn't have an aneurysm. But

 

I've read about something like NASAH, and that's where the next questions and worries come in. Recently, the squeaking in my ear has intensified and it feels like something is ticking in my head, like splashing water (mainly when I go down stairs or jump). I am also terribly concerned about these meat smells and some products smell and taste rotten to me.

 

I've been really thinking about suicide lately, but your kind words and support are helping me a lot. I am so grateful for the help I have received from all of you. All the time I wonder if I will ever feel even 1% better, I am slowly losing hope. Every day at work has been a torment for me lately, I fear that my exertion will cause bleeding again if I have not been diagnosed before.

[Skippy]

Hi there

 

Please express to your "specialist" that it IS possible to have a brain bleed without an aneurysm - even direct him to this site so that he can see for himself!  You never know, he might learn something. Failing that, get a second opinion from someone who doesn't apparently have a "God Complex"!!!

 

Please, please stay strong.  I know this can be very upsetting, scary and frustrating for you - read the Forum Thread NASAH and take heart from the experiences on there.

 

You must also try to do something about the work situation - have you tried talking to your employer about your situation?  I'm not sure if you have the same provisions in Poland as in the UK, where we are entitled to Statutory Sick Pay if we're working - not completely sure what the pay is in relation to your actual earnings, but it would be better than nothing if it helps your recovery.

 

Your and your health are the most important things right now, don't stop badgering anyone until someone listens to you.  

 

Most importantly, remember, you are not alone!  We are here to support you in everyway we can - if you want to pour out your feelings then feel free to do so, we are a support group and that's our speciality  

[DaVinc1]

1 hour ago, Skippy said:

Hi there

 

Please express to your "specialist" that it IS possible to have a brain bleed without an aneurysm - even direct him to this site so that he can see for himself!  You never know, he might learn something. Failing that, get a second opinion from someone who doesn't apparently have a "God Complex"!!!

 

Please, please stay strong.  I know this can be very upsetting, scary and frustrating for you - read the Forum Thread NASAH and take heart from the experiences on there.

 

You must also try to do something about the work situation - have you tried talking to your employer about your situation?  I'm not sure if you have the same provisions in Poland as in the UK, where we are entitled to Statutory Sick Pay if we're working - not completely sure what the pay is in relation to your actual earnings, but it would be better than nothing if it helps your recovery.

 

Your and your health are the most important things right now, don't stop badgering anyone until someone listens to you.  

 

Most importantly, remember, you are not alone!  We are here to support you in everyway we can - if you want to pour out your feelings then feel free to do so, we are a support group and that's our speciality  

Thank you. I feel like the doctors didn't care about my symptoms. Recently I found a private clinic where they perform lumbar puncture. I am afraid that after such a time the examination will not show anything and it costs a fortune, I do not know if I can even cope with my salary. I also read that small aneurysm may not be detected by CTA and MRA, I don't know if it's true and if any of you can confirm it,

 

I read that it's best to do DSA but here's the problem again, they don't do it privately anywhere and it's almost impossible to do if the MRA and CTA showed no suspicions because I have already asked many neurologists and neither want to order this test. I don't know what to do anymore, I feel so weak physically and mentally. I am 21 years old, I was active in society earlier, I had a girlfriend, and now I hardly speak to anyone, sometimes the pain is unbearable.

 

At work, everyone jokes that this is just a headache, I will be fine, but they do not realize how intent this pain is, as if I had a nail in the middle of my head on the right side. I don't know if anything will ever change. Faith in God will keep me, but the psyche is not on my side. I started to pray very hard, it gives me a little peace. My parents support me, but when I have bad days with my leg and headaches and neck aches, as soon as I mention that it is not from the psyche, but something bad is happening in my brain, they start telling me to stop winding up, that I would not survive so long without diagnosis etc etc.

[ann_calgary]

Dearest DaVinc1,

 

You have been given helpful advice by very wonderful people. I am glad you found BTG. I don't have much to add except I want you to know as a fellow believer, I will be praying for you. Keep the faith and let His will be done. If I may share a few verses that gives me strength: Deuteronomy 32:4; Proverbs 3:5, 139; Joshua 1:9 and Matthew 6:34.

 

We are always here for you,

Ann