Its been a while I have not posted. Ive been in avoidance. Truthfuly im affraid. Im experincing symptons and unknown reasons. After having the seizures and going through testing to see if they are seizures we are at a dead end. Doctors arent even sure they are seizures. Cardiology is fallowing me closely now that i have fainted atleast 4x before. There is a narrowing in my brain; something about v4 segment. Im dizzy im not well on my feet i am completely disoriented most of the day and extremely fatigued. Im trying my best to stay calm and to just let things play out as they should but its hard. Im really scared of what this is indicating. My brain isnt getting enough oxygen so how can i not be scared. The probability of having a stroke is high. My faith is a bit shacky. My fear of the unknown.
Hey Rossyp,
And thatās never nice. When we have multiple diagnosis it can be a real mine field to try and get a clear answer. One specialist may identify a known condition, only for a differing specialist to identify yet another. How do I know this? Because itās happened to me too.
They operated on me, telling me āAll fixedā, only it wasnāt fixed at all and since then Iāve had more pseudo diagnosis than I can count on my fingers (and toes). At times I go to stand up, get super dizzy and, on occasions, have found the floor with a thud. Nobody has been able to give me any clear answer and some medicos have disagreed with the initial diagnosis. So, itās all as clear as mud.
Your fear of the unknown is real and it is understandableā¦In other words ā¦(Again) Me too!!! And not being able to get answers only adds to that fear. I try to look out for significant changes and a progression of symptoms as signs of āI need to actā. I have, on a few occasions, had those āI need to actā signs, gone to hospital, only for them to do their scans, find nothing and send me home. But then by the same accord Iāve ignored symptoms, then had the neurosurgeon tell me āYou should have acted soonerā¦ā. So those indicators are not always so clear cut either.
Hereās a bit of a breakdown for you:
The artery they are talking about is the vertebral artery, which has 4 sections. V1 being at the base of the neck, near the collarbone. V2 being through the vertebrae in the neck, V3 being at the top of the neck and V4 being where the artery passes through the dura matter covering the brain. All 4 can have their own specific symptoms but often obtaining direct answers is near on impossible as each can have flow on effects to another.
Dealing with the brain is never easy, we know this because we live with it too, so come talk to us.
Merl from the Modsupport Team
Rossyp,
Sorry for your stress.I will send positive thoughts that your medical/advocacy team finds a healing path best for you.
If you can focus on relaxing in the present moment it might help you feel better now. āMindfulnessā practices have been shown to help patients focus and helps in many conditions. Many books, articles and audio guided helps are available. Your local library can help you find what might help you most if that sounds like it would be useful.
Best wishes,
@Rossyp -
Although I am new here, I am grateful you took the time to reach out to all of us and tell us what you are going through.
Like @Kdyd, I am already sending along healing thoughts to you, and hope that you are able to get some answers soon - either with your current medical team or a different team, should the current ones not be able to come up with a diagnosis.
Rest is a beautiful thing for our brains as you know, so lean into it, and just take the time that you need. And feel all the positive energy you are getting from all of us from across the miles!
Itās really difficult when weāve experienced a rupture and then have other health issues to deal with isnāt it?
Hereās a drawing of what Merl was describing
I need images because I still have problems holding them in my brain.
Fear can be good and it can be bad for our health. When weāre experiencing fear, it messes up with the oxygen our brain receives. We can hold our breath, not breath deeply enough or breathe shallow and fast which is similar to what we do when we are in pain. Itās very important we breath deeply to help the oxygen reach our brain. As @Kdyd suggests, mindfulness can help. One of the things about practicing mindfulness is to do relaxation breathing. If done correctly, it can reduce our blood pressure. I know this because I have practiced relaxation breathing for decades and when I ruptured I was told to stop it. My style of relaxation breathing was strong enough to fight the Triple H therapy being given to me for my vasospasms which meant they had to give me more. There are numerous YouTube videos on square breathing which the military uses, 4-7-8 method, belly or diaphragmatic breathing. The type I was taught back in the ā70ās was to breathe in through your nose to your diaphragm hold for a count of five (use your fingers for counting) exhale strongly and completely through your mouth, pause and repeat. Regardless of which style you use, you have to practice it all the time. I do mean all the time so you get the technique down and it becomes second nature. So when you get up, when youāre in the bathroom(donāt try it when your brushing your teeth) before a mealor snack, after either, watching television, going to the doctors, before you go to sleep. So basically all the time.
Sometimes when our faith is shaky, we need to pause and perhaps just look around us. Faith can mean a lot of things, practicing gratitude can be helpful. Itās hard to see positives when we have so much on our plate. I find thereās positives in everything, some days I see them quickly, some days it can be a struggle so I step back, breathe, clear my mind and try again. Hugs can be helpful as well as they increase our endorphins, the feel good hormones our brain produces.
Remember we are always here for you.
Moltroub,
This was such a helpful explanation and an integrated reminder ā¦
thanks for the vivid visual help ā¦
it makes it real and practical ā how we need to get this into our being and everyday routine to respond to stress!
Grateful for your time, wisdom and kindness!
Dear Rossyp,
Iām scared right now, too. I learned of my aneurysm Nov. '22. Iām doing Wait and Watch. Itās large at .5 centimeters. My neurosurgeon shared his ā1-1.5ā ratio: chances of dyingā1% for God, 1.5 % for coiling. I chose Godā¦wait and trust. I rarely think about my ani. I changed my behaviorsā¦no exercising (not even gast walking), no daring activities, ie. roller coasters, go-carts, etc., no alcohol, no cigs (still working on that one), scary books or moviesā¦nothing that could raise my blood pressure, monitor my blood pressure, and tell every kind of doctor about my ani (share diagnosis paperwork with them each), and ask my pharmacist to check each new script to be sure itās safe for my ani, because doctors will forget.
Now, that forgetting is why Iām scared. Yesterday I told my GP that it was time for another MRI. She said, āI forgot about your aneurism. You havenāt had one since your original one.ā I said, āYes, I have. I had one last Julyā¦ There was ni change.ā "Thereās nothing on your chart " Instant fearā¦I was told to get one every 8-12 months; it I imagine last July? I remember it and the results! Iāve waited way too long if so. So, I must go to my imaging center to be sure. Iām very scared if I missed last year! I rely on my complete faith in God, but need to do my part. I have a script for an MRI to take with me. They never answer their phone, so everyone just walks in. Thursday is the best day, but I need to go today. I want both you and me to pray fervently and trust God. We need His peace and comfort right now. I will include you in my prayers starting right now.
Iāll keep you all posted. Blessed be, Shirley.
Shirley, exercising is still good for you, walking is the best just donāt do it when itās hot and humid. Exercising helps keep our brain healthy, I kid you not. When I was stationed in Pensacola the mornings were best, those early afternoon thunderstorms that you could set your watch by didnāt cool anything off, they just brought in much higher humidity. Of course ask your doctor but I imagine sheāll say to exercise. Thereās also chair yoga and tai chi that is easy exercise so look to see if you have any resources for either.
Have your doctors considered myoclonus? Mimics a seizure to see happen. I have dealt with this since the aneurysm in 2021. Thry try different meds but so far Iām still searching for real help. I wish you all the best.