DaVinc1

A quick update on my post about undiagnosed SAH. Finally, I found a doctor who explained what happened to me. It turned out that my MRI examinations were poorly described and the radiologist did not find any damage to the brain tissue caused by the blood pressure surge.

After looking at the test, you could tell I had something called pres syndrome. He also referred me to an MRI scan with a higher magnetic field to exclude bleeding. I am much calmer that I finally found something and that God listened to my prayers. I would like to thank you again for all the kind words and advice. I will let you know after the tests if I have not had bleeding.

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.

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.

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.

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.

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.

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.

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.

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