Irish ‘brain bleed’ then stroke diagnosis

[Sharon]

Hello all,

Thank you to the support team for the welcome!

I am back in the states a bit over a week now after experiencing the worst nightmare imaginable in Ireland…..

my family and I travelled to Ireland to visit friends and family in April for what should have been a weeks visit. I had had a migraine ( have always had migraines) a few days before we left and it was Not going away as I had hoped but we all pushed on with the plan and I landed at my MIL’s house with the lingering pain of migraine and couldn’t wait to get to our B and B in order to find a dark room to rest in. Once we traveled the hour south to where we were staying the familiar wave of neasua came over me and I thought ok- once this passes the migraine will go away. I was very wrong with this thought. The sickness kept myself and my husband awake that night and the next day we were jet lagged and exhausted but it was our twin boys 18th birthday so we buckled up and took them out for lunch and ‘drinks’ since the drinking age in Ireland is 18. We got photographs and the boys had a great time out. That night i was sick again ( blaming the Guinness) with a pounding headache I believed was a migraine again.

No sleep for anyone that night.

The next day I went to visit a friend whom I had worked with for year’s training horses and she had a wonderful young horse for me to ride. I was really looking forward to this as the b and b was feeling very much like a sick house to me and I needed the air.

I tried on a few of her helmets she had for students and the one I picked was a bit tight but not too bad I thought. It was a warm day and as I started riding I was hit with a wave of breathlessness and such a throbbing headache I had to stop and remove my helmet. Wow, this was unusual, I put it down to the heat and maybe a hangover? I was definitely dehydrated from being sick but it did eventually pass and I enjoyed the rest of the ride. As soon as we were finished I asked to be brought back to the b and b, canceling any plans that we previously had made. Once back with my husband I began to sweat profusely and vomit uncontrollably again and the headache was off the charts. This lasted until at last my husband was like- we have to get you to a hospital, this is not your normal migraine. We went to several ER’s and we were sent out of each one, they said either we can’t help you with this or it will pass if it’s a migraine. I remember getting morphine and fluids at one ER and was only more confused after that as why I was still in such pain.

The 4th hospital we went to in Dublin was able to take me right in to an MRI scan and put me in a bed in a ward. There one of the Dr’s explained to me that I had had a ‘brain bleed’ and subsequently had a stroke. He kept asking if I understood what he was telling me and in all honesty I could only say no. We were to be leaving for home in the next day or so and he said- no, you are not going anywhere for a long time. The bleed was 2.5 inches and there was a midline shift 1/2 in to the left. There was too much blood and swelling to actually see what was happening in my brain so I was going to be admitted and monitored for what he described as ‘possibly months’. Wait a minute- what??

I was admitted to the stroke ward where I spent the next 4 weeks. There were 6 beds in my room and each of us had some sort of brain malfunction. Dementia, head injury, stroke, you name it. No one was happy about being there. Especially after 6pm.

The only meds I was given were steroids and melatonin. I was taken off my statins and ssri’s that I had been on, only exacerbating my anxiety and depression and brain zaps. They were adement that I not be on any medication besides what they prescribed. My husband sat with me daily and after the first week we had to send our boys back to the states alone. They still had another month of school to finish and my sister was going to look after them. We were really getting no answers from our drs while in hospital, they had their hands tied as I was not part of this social insurance system. They wanted more scans etc but they were not able to get them for me.

On the 28th day in hospital we started to really push for being discharged. My MIL said I could go stay at her house and the hospital agreed. They were able to provide an OT to visit since the house was in the area where the hospital was. One thing the drs would not do was allow me to fly back home to the states. They would not sign off on this. We were another month in my MIL’s and gathered enough support to take a transatlantic ship home, leaving from Southampton UK to NY. That journey is a whole other story!

Once back in Boston we figured we would have much more access to Drs and scans and answers. The second Dr ii spoke with at my PCP’s practice was the first one to say- brain bleed; do they mean aneurysm? Is that a word they avoid in Ireland or something? Because for a healthy 56 yr old to just have a stroke with no lingering damage from it is not typical. So then I searched up aneurysm and ended up here.

So I am not sure if I belong here or not? This coming month I have dr appointments but no new imaging until the last Friday of the month. Meanwhile in Ireland I was told not to drive and to continue therapy etc and here I am feeling like I am doing nothing and having still no answers. The depression and anxiety I am experiencing is beyond belief. I have lost my job and business during all this and feel less informed and more alone than ever. Thank you for reading this far, it has felt good to share this experience with a community that may understand better than any other about how one’s life can turn inside out in a heartbeat.

I am grateful for your kind attention. xx

@Moltroub

Well Hey World! How’s everyone been doing this last week? Have you been practicing your breathing exercises? You do know by now, I’ll either be asking or reminding you, I hope…My week, has been like life. A bit of a yo-yo type of week. So, yes, indeedy, I have been very mindful to breathe correctly. Wouldn’t have made it through it, if I hadn’t I imagine without taking one of those pills I reserve for bad brain days.

Let me tell you how it all started, shall I? The beginning of the week, we went to see the wonderful, amazing Dr. Quintero-Wolfe. Of course before we went to the appointment with her, it was the MRA. Man, was I ever grateful for the new MR machines! I became quite excited, which isn’t really controllable so there goes the speech lessons and stutter comes out. The new machines at Baptist (AHWFBH) are the fast ones, really fast if you’ve been having them for years. And guess what? They have headphones with music! Ask and it shall be given! I asked and did indeed get my favorite ‘70’s music. But before three songs were done, they were pulling me out and trying to take the headphones back, dang it I really liked the last song. LOL. They also don’t put a strap so tight you can’t move your head. Overall, I rate it a 10 for everything nice!

The Imaging Center at Baptist was being repaved so we had to go to a different parking lot and then a short walk to a different building to check in, slap the paper badge on and a very kind guy asked if I needed a wheelchair. Nope, I can walk and it’s one of my favorite things to do. BH has been having issues so I asked if he wouldn’t mind. He kept saying it’s a long walk. I thought we would be going down the long steep underground hall that staff used to get me from NSICU to Imaging, but he had no clue what I was talking about. Sad but true. The walk wasn’t bad at all, less steps than I take when we walk about the yard.

He picked us up and we asked if he could take us to the cafeteria. I don’t recommend it in case you’re wondering. We didn’t have time to go to one of our favorite diners, get back, park and to the appointment. Whilst eating the food, I said dang it all, we should have gone to the basement area where they’ve got fast food restaurants. I would’ve gotten one of Subway’s wraps if they were still there. Heck, we could have eaten at Starbucks, had a decent cup of coffee and a better meal.

Walked over to another building, with a detour because of a sign. Went over to Neurosurgery, but the check in machine wasn’t working so across the room to the machine at Neurology. Before I could open my book, was at the window checking in. Sat back down and before I could open my book, was called back to the appointment. This was faster than we’d ever experienced! The CMA who was the same one I had the last time which was five or so years ago was there. The blood pressure machine went a bit too high and I hollered, got a bit miffed and told him he pumped it too high. He just puts the cusp on, the machine does everything. So I told him the settings were wrong as it went up to 160. Yes I do know folks have high BP but jeeze Louise, it hit the nerve that’s pinched and shot a sharp pain up into my neck and down to my hand. Did I fail to do my breathing at the exact instant? You betcha I did. My brain is on delay after all. Once it got the message to me I may have been too harsh, I started it. Apologized for my outburst due to the lightening intense pain and told him next time I have to have it taken I am definitely using the other arm. Lesson learned!

Ms. Ryann came in and after greetings I said out loud of course that I was there for my brain, not my neck. So I wasn’t going to discuss it. We do have to stay focused on what the specific appointment is for although it can be difficult when you have another issue that’s being followed. So after blurting it out, I inquired as to the reason high pitch noises bother my cognitive functioning. She suggested getting my hearing checked because it’s been awhile. She was also going to discuss it with Dr. Q-W who goes by Dr. Wolfe now. Must be easier for folks to say Wolfe, instead of Quintero-Wolfe.

Dr. Q-W goes over my MRA after we get our hugs. She has been my neurosurgeon for a fairly long time and hugs feel good for everyone. My aneurysm is not playing nice. There’s residual filling that has grown another ½ mm. Doesn’t sound like much but now it’s back to 3.5 mm I believe it is. So BH got scared, very scared. I could feel it, Dr. Q-W has put up her doctor wall, I could feel it. I immediately put up my Social Worker wall. Amazed myself with all of that! I hadn’t put up my wall in well over a decade, didn’t realize I still had that tool. It’s a miracle that I can feel other’s energy. For years after my rupture that tool went MIA. She can’t see inside the coils, so she doesn’t know what’s going on in there. I can’t have another angiogram unless it’s to save my life, anaphylactic shock is no joke. The only reason I survived it is because Dr. Q-W barked some orders whilst I was doing my relaxation breathing. I’ve experienced anaphylaxis many, many times due to allergies. I promise if you can center on your breathing style and not on the fact everything is trying to swell up it helps. It was funny that her Resident and she were telling me to breathe and then Ms. Ryann came over telling me to breathe. All I could do is give a thumbs up to show them I understood.

So what’s next? Well I’m on the W and W list of course but I’ve been being on it so not really a big deal. Sucks, but I no longer am on the give it 5 then 3 years for imaging. Back on the yearly ones. But I do get to tell Sergey he doesn’t need to order them yearly throwing my count off, Dr. Q-W has it covered. ROFLOL. She can’t do a craniotomy, location matters a lot and size. It’s not big enough for a clip. I didn’t ask because BH was working very hard to keep it together what the odds are of it deciding to rupture again. I know from perusing the internet that my chances of another rupture is pretty high so there’s that and maybe if it does rupture I’ll be feeding the roots and not walking on the grass. I’m also kicking myself in the rear because I didn’t save the link for a new stent that was in the testing phase for my type of multi-lobed aneurysm. If it can be found, I’ll ask her about it.

I did find this sometime this week Consequences and coping strategies six years after a subarachnoid hemorrhage – A qualitative study - PMC . Because one of my questions was if the MRA could show any continued brain damage happening. I’m not sure the MRA is the correct type of image to see it. We know the risk for dementia is significantly higher for someone who has experienced a SAH than the general population. I didn’t get an answer that I was wanting when I asked in my portal. Guess that means there’s no clear cut answer. But one should never assume, so I asked the question a different way in my portal.

Now I want to brag on Dr. Quintero-Wolfe, if I may. Really you can’t stop me, heck I can’t stop myself. She has been involved in lots of research. She has been promoted to Chief of Neurosurgery not just for Baptist but all of Atrium Health which means she’s got 13 neurosurgeons under her! I’m very, very proud of her. Do you know how difficult it is for a female doctor to get that type of promotion in a male dominated field? Seems maybe I have lived long enough to see women get the credit they deserve in male dominated fields. I hope Atrium Health is paying her the same as they would a male doctor. And yes, she still has time for her family, I asked.

Enough about me, let’s head to the welcomes!

@Pelion3484 is up in Washington District of Columbia. MaryKate shares she’s been clipped for a Middle Cerebral Artery aneurysm just a short time ago. She’s now in active recovery. MaryKate also shares she’s retired in Washington D.C. We hope your recovery is going well!

@Sharon is also in the USA up in Massachusetts. Sharon says she had a migraine/brain bleed while visiting family in Ireland. She also shares she’s the mother of twins, an equine enthusiast and struggling with anxiety. We would certainly love to read more of your story on what type of treatment you will be getting and what was done in Ireland.

@ Newme9192023 is in Michigan. Kimmy has had 3 clippings. The found 3 aneurysms during a CT scan to rule out a TIA. One of the aneurysms was fairly large and needed to be operated on right away before it ruptured. The other two could have been monitored but since they were already clipping the one, decided to go ahead and clip the other two. Kimmy also shares she’s a grandmother of 4 grandsons! Dang girl! Sounds like not only did you get excellent treatment, you’ve got grandsons to keep you busy!

Leaving the States and going Down Under to meet @Mina in New South Wales. Mina had the MRI which detected a 1.3-1.6. The neurosurgeon can’t confirm if it’s an aneurysm or not so an angiogram will be next. We know the not knowing can be a bit on the stressful side Mina, come talk to us! We’ve got a few tricks or tools to help you out.

That’s this week’s newest members! For the newbies, we would really love to get to know you better. Just start a new topic under the General tab and click on the box that says +Add New Topic. That will bring up the box so you can give it a title and then one under it will allow you to type whatever you want or need from us. The magnifying glass allows you to search for existing topics. If you run into any problems let myself (@Moltroub) know and/or the very kind folks who make up @ModSupport one of us will help you out if you have troubles navigating the site.

For all the existing members, oh my gosh y’all! You make me very proud to be a part of this support site! The help you give others is outstanding and I really appreciate it, keep it going! Big Hugs to everyone of you who have taken the time to help another! I am so proud of you, I may be at a loss for words!

I hope everyone has a wonderful week! By next Sunday the United States will have celebrated our 250th anniversary of being a country! Most folks around these parts will either head to Myrtle Beach or over to Dollywood. Please don’t ask why, I’ve never figured it out when there’s so much more to do. Have a safe week, don’t drink and drive, don’t do drugs, keep healthy. Of course make sure you’re staying hydrated whether in Summer or Winter, rest and eat your protein as needed. For goodness sake practice your type of relaxation breathing!

[FinWhaleFan]

Hi @Sharon,

Wow, what an incredible journey you have been on. I am soooo happy you were able to make it back home safely, and that you have your medical team investigating this!

Highly likely you have seen already, but I poked around and found this Cleveland Clinic description of brain bleeds.

Brain Bleed: When To Call for Help

Certainly one of the causes could be an aneurysm, and given some of your descriptions it does make some sense.

I would guess that just about everyone here has a greater appreciation as to how life literally changes in a single moment. One thing for sure is that you are NOT alone any longer, as we are all here for you now, along with your family and friends, of course!

I am happy you were able to get some imaging scheduled for later this month. I am not sure from your message if you were also able to get an appointment with a neurologist as well, or if you already one as part of your team? They would seem like a key person to add. I am also wonderimg if a therapist/neuropsychiatrist/etc. might also help with the depression and anxiety, as you have been through a tremendous amount, and have a heck of a lot to process!

You have shown yourself to be fierce and resilient! I believe in you!! Please continue to vent, ask questions, and let us know how we can support you!

Fin Whale Fan

[Moltroub]

Good morning Ms Sharon! I’ve moved your topic over to the General tab it’s a thing I do here. When replying you just need to click on the reply button, no need to do the quote thing. Although you can quote a specific piece of someone’s post by highlighting it. I’ll have to ask @ModSupport how folks are able to get an entire post under theirs, it’s a skill set I don’t have. Now that the business end is done…

What an amazing trial you went under! So many lessons on traveling outside of one’s country to another, thank you so much! I’m going to agree with @FinWhaleFan in thinking a neurologist would be added to your specialists list if you don’t have one already. The hospitals in Ireland should be able to release their medical records to whomever you are going to see. It’s amazing what computers can do and do quickly. You may want to check with the upcoming appointment to see if the records should get to them before your appointment. It may help the radiologist who will read the images.

You absolutely belong here, otherwise you wouldn’t have been accepted. We are also pretty lenient when it comes to brain matters. If in the future you decide we aren’t the right support group, that’s ok. But for now, let us support you!

[darlysaar]

Wow, Sharon, what a horrifying experience! I’m so glad you endured this nightmare of a bleed and the long journey home. Many of us never rupture, but live with the fear of having a bleed in the middle of nowhere, far from our comfort zone and support systems. You’re amazing! I’m sure you had some hard days, but to stick it out in limbo like that is just incredible. I hope you are comfortable and at peace now, and that you get all the answers you need to live as freely as possible.