Aneurysms?

[LisaColumbus]

Does anyone know if cerebral aneurysms are frequent occurrences among POTS/NCS patients? I had an MRI done yesterday because of experiencing short term paralysis, confusion etc last week as well as frequently feeling as if my brain is shaking inside my skull. This morning the doctors office called, it seems that I have an aneurysm. Talk about shock! I had to go back in for an MRA earlier today and am awaiting the outcome of that. I tried to call Dr Grubb to find out if I should quit taking the florinef and adderall because as this point I am not sure how those meds affect cerebral blood pressure, but he is out till December and the nurses wouldn't give me a yes or no.

Has anyone here experienced this? If so any ideas, recommendations? I am scheduled to see a neurologist tomorrow afternoon, is that the right type of doctor for this type of thing? I am SO clueless with all this and am a tad bit freaked out.

Thanks,

Lisa

[opus88]

Lisa,

If you just got that news and you are only a "tad bit" freaked out, you're pretty strong! If it were me, I'd be all over the internet trying to learn about it before my neuro appt., and then doing more research after the appt.

I've never experienced anything like what you are going through, so I can't be of any help except to let you know that I'll be sending you lots of positive energy. Please let us know what the neuro says.

[MomtoGiuliana]

My goodness--thank god they found it.

This may just be a coincidence. I have never read that there is any connection between POTS and aneurysms.

I remember about 10 years ago my college's president had one in his brain--found in a MRI. It was corrected and he is doing fine today.

Let us know how you are doing.

[LisaColumbus]

LOL! I am all over the internet researching. I actually dx'd the aneurysm from the mri scans prior to the doctor calling me. Amazing what you can find on the web.

[Merrill]

Lisa, I'm glad to hear you have an appointment tomorrow with a neurologist ... I believe that is the appropriate doctor for you to be seeing next. Definitely talk to him/her about whether you should be continuing with those meds... what a shame that Dr. Grubb was unavailable! If it weren't for the fact that you were seeing the neurologist tomorrow, I'd suggest calling back and trying to speak with another physician in his office.

I'd be freaked out too--your concerns are understandable. Please try to do what you can to stay calm and relaxed! The truth is, you need much more information right now... I do know that not every aneurysm is of a size that warrents treatment, and people can do just fine with and without treatment. (My cousin had surgery and is just fine; a friend's mother is not being treated for hers ... It depends on so many details...)

Please keep us posted if you feel like writing with news after your appointment.

I'll be thinking of you and praying for a good result!

[yogini]

That's really awful, Lisa. At least it explains some of your symptoms, though. Since you can't reach Dr. Grubb, please make sure to tell the neuro about your meds tomorrow (if not today)! I am not sure about aderall, but florinef raises BP.

Best wishes,

Rita

[corina]

Lisa,

I'm very sorry for you to have this, but glad they found this aneurysm. Can't do anything to help you but want you to know I'm sending good thoughts to you and REALLY hope this will work out well for you. Best wishes,

Corina

[justin]

wow.

i'm sorry to hear that, too.

good thing they detected it, though, cause most cerebral anyeurism ruptures actually occur in ppl. who's anyeurisms hadn't been diagnosed (i think).

in answer to the POTS/anyeurism connection, i'm not entirely sure. however, i had an x-ray of my head when i was a baby (i had a dose related allergic reaction to penicillin that made my head swell to twice it's size) or something (i don't know if it was an x-ray or a CT or what) and my mom tells me that no anyeurism was detected. and i had a chest/abodomen CT last year, and it didn't see any aortic anyeurisms either. so apparently i don't have them.

keep us posted.

justin

[Emmy]

I'm 34 years old. I was diagnosed with dysautonomia when I was 16 years old. And a brain aneurysm back in October of 2017. I've read that studies have shown that the two conditions seem to be connected, but Drs aren't sure how. 

Have you heard anything more about it?

[MomtoGiuliana]

I'm sorry about your diagnosis.  Good it was found.  The only connection I can think of is EDS.  Some forms of EDS can make you more susceptible to aneurysms, I believe.  And EDS and POTS can go together.

[maggs]

Yes, I agree with @MomtoGiuliana . While EDS isn't the only condition associated with POTS that can cause aneurysms, I believe it's the most common. But the most common form of EDS is hypermobile EDS (hEDS), which doesn't carry as high as risk for aneurysms as the vascular type of EDS (vEDS). But really any connective tissue disorder (eg: EDS, Marfan Syndrome) can cause aneurysm and is a comorbid condition with POTS (meaning they commonly occur together). There is genetic testing for vEDS which makes it a little easier to diagnose (hEDS doesn't have genetic testing currently).