Ok all you brains out there! I have a new condition, & I want someanswers my doctor did not give me. You all know I have Lupus, failed back surgeries, Fibromyalgia, mitral valve leak, A-fib,osteoarthritis, osteoporosis, & the new one is tadah:high blood pressure! Has always been very low, was given my stress test in Dec. & echocardiogram=ok. BP was, and usually is low like 110/60. Haven't felt well & for some reason decided to check it. It was 190/100. That was yesterday & still today 190/100. Seen my doc yesterday & put on Furosimide which according to this site interreacts moderately with everything else I am on! What I haven't mentioned is I also have vasculitis of the brain. ok, no smart alec remarks about that! What I want to know is if anyone knows if that raises my chances of a stroke any sooner with the deep white matter vasculitis? If I'm not on tomorrow you'll know what happened!
Anonymous Vasculitis of the brain - will it increase my chance of stroke ?
- Posted:
- 22 Feb 2012 by Anonymous
- Topics:
- high blood pressure, osteoarthritis, pain, fibromyalgia, systemic lupus erythematosus, blood pressure
Added 22 Feb 2012:
Yes, friends, I am still here this morning.Echo mention a list of my meds so here goes: furosimide 40mg, atenolol 25mg, omprazole, actifed, oxycodone 15mg, benadryl 25mg, Forteo 20mcg,alprzazolam 3mg, taken off Lyrica yesterday altho site shows no interreaction with furosimide. I have allergies to about everthing imaginable too is why the benadryl & actifed. The most noted interreaction was furosimide & Lupus erythematosus, as use of furosimde has been associated with exacerbation of activation of systemic erythematosus. Therapy with furosemide whould be administered cautiously in patients with a history of Lupus, Altho' I believe I have been in a flare as of recent anyway. I haven't done or added or taken away anything lately. thought the selling was Lyrica, but now 2 days off, no difference. Tought some might be allergies, but meds aren't helping with that either. Not the usually running nose & itchy eyes, just swollen & don't know how long the BP has been high, just checked it 2 days ago because as I said tis usually very low. Hopes this helps. Going to have to pick up a port a potty to take the dog to the groomer & have my jaw xrayed today! Oh, I talked to EliLilley for my monthly check up with the Forteo, & the nurse checked & 7% had an increase in BP in trials with Forteo & 6% in placebo. I'm on month 15 now. Wasn't there in Dec. at month 12.
Added 22 Feb 2012:
Went to the neurologist for memory probems (short term) so he did an MRI of my brain, here is what it said: Diffuse athropy, no mass, no hemorrhage. Mutiple foci or increased signal intensity seen in deep white matter of the brain. They are non-specific & could be related to microvascular ischemia or vasculitis. Next day I went deaf in a snap in left ear! Sudden Deaf Syndrome. so another MRI with dye (which I got hives from) No acustic neuroma. There is prominet subcortical & periventriular siganl abnormality, suggesting chrontic changes of small vessel ischemic change. Tttthhhaaat's it folks! (As Porky Pig would say!)
Responses (14)
Anonymous 
msfino22 Feb 2012
Yes Mary, I am answering you!! Did they do a biopsy of your arteries in your head,or did your doctor merely make this diagnosis off the top of his head? They thought that I had vasculitis at one point, but to confirm I had to have biopsies of the arteries that lead to the brain. (Hurt like a bitch too, but the Dr. didn't believe in giving someone on pain meds, more meds UGH!!) Anyhow it was ruled out, but the treatment is high dosages of prednisone. If it is under control, it will get better and better, but takes a while... anywhere from nine months to several years if I remember correctly. BUT, don't just take a doctors word for it, unless they do a biopsy. Love you!!
Anonymous 22 Feb 2012
Hmmm. Maybe I need a new MRI. But boy do I have a bad headache too. & the diagnosis was done via MRI... Mary
Anonymous 22 Feb 2012
Hi Msfino,this has been a bilingual blast,wish Mary felt better,hugs,c
msfino
nenag22 Feb 2012
OK Mrs. Mary i have no idea what to say only that i will say a prayer for you. I know that both of my parents have HBP and most of the male men in my family as well. Being of hispanic origin they tend to drink tons of teas to help control HBP. I have on cousin who swears by it. I will get the name of it for you if you like. I really cant help with the other conditions, but i will give it to the good Lord above to help. oh and by the way the last comment - NOT FUNNY! LOL - have a great night & God Bless - Nena
Anonymous 22 Feb 2012
Thanks Nena, & yes you are right, NOY FUNNY! Tis my weird sense of humor! Thanks for the prayers... Mary
Anonymous 22 Feb 2012
That was NOT not NOY!
echo0822 Feb 2012
Dearest Mary of the Many Numbers - I'm guessing ur already asleep but wanted u 2 know I'm here too. Called my sis (she's a nurse practioner), emailed the doc I work w/, & dragged out all my neuro & med textbooks. Especially concerned cause you mentioned white matter vasculitus. Not a part of the brain anyone goes plundering around in although as has been mentioned, biopsy the safest artery. First thought - I'm guessing u have a rhuematologist 4 the Lupus? Lupus can do fun wacky morphing things like go from basic 2 adding different subsets like lupus vasculitus & head 2 the brain (was that a pun?). If u have halfway decent insurance and/or don't mind putting up a fight - somehow I think you'd be fine w/ that :) - PET scan should show more of what ur looking for. Hypertension increases risk of strokes & heart attacks all by itself but there's so many good meds around now.
Anonymous 22 Feb 2012
Ok echo I added my meds to the question. I hope I got them right.It's still early, but believe they are all there. That is what got me to join this site in the first place. I love my doc, but he's just a man ya know. Doesn't know everything, & usually sends me off to specialists for just about everything. Wanted to fax him a copy of the interreactions lol. Maybe I should pay the neurologist a visit again. Thank you so very much for all the work you are doing for poor little (well big now) me... Mary
Anonymous 22 Feb 2012
Awww, thanks Mary. I hope this goes down sooner than later. Has me very perplexed. Felt like the top of my head was going to blow last night, is why I posted. Thank you agiain, tis appreciated... Mary
madhattersbash
22 Feb 2012
I've always got your back--- we 'oldies but goodies' have got to stick together!
Mary, madhatter.
tlcandmore22 Feb 2012
Hi Mary Sweetie,
I can't really answer your question either but I do know we need to get that bp down!! Oh and no more jokes about you not being here. What on earth would we do without you? Just wanted to let you know I'm sending prayers your way.
Love ya bunches -Terri-
Anonymous 22 Feb 2012
Hey Ter, ( if you all are going to call me Mar which is fine with me then I get to shorten names too!)thanks hon, I haven't checked it yet this morning. With my flubbed up left hand is hard to do alone, & tried our wrist one, doesn't pump up high enough, Oh, wait I hear the man of the house roaming around! Will have him help me. Thank you so very much for you love & kindness... Mar
tlcandmore
22 Feb 2012
Hey Sweetest Mar,
I haven't been called Ter by anyone but my mom-in-law and she passed away last year. I miss her so much. You remind me of her and then you go and call me Ter. Oh it brings back great memories. I have been trying to keep up with what's going on with you but much of it is Greek to me. Give me a computer problem and I'm hell on wheels but not so much with the medical stuff. I know my own stuff having to be our own advocate and all but that's about the extent of it. So glad you have lots of support here though. You are such a dear person and loved by all. All my prayers continue to be with you.
Love and hugs -Terri-
gitabucks22 Feb 2012
Sorry to hear about all your problems. I can't offer any good advice only to let you know that I'm praying that someone out there has the right info. It seems that lupus and all the different drugs tend to cause our bodies to go through hell and back sometimes. Wish we could find the right pill to make it all go away.
Anonymous 22 Feb 2012
Thank you gitabucks, do you have Lupus too? I appreciate the kind thoughts... Mary
pledgeAnonymous 22 Feb 2012
Hey, that was a secret, but was the first thing I stopped re-doing. Only had a couple a day! Got things moving if you know what I mean! Ha! NO MORE EVER! Quit 8 years ago, & would not jeopardize that health benefit for anything (altho I have noticed no difference) Your friend Mary
pledge
23 Feb 2012
:-0) Thursday morning. Coffees perking. Have a good one Mary, talk to you later,pledge
lisajznj22 Feb 2012
Hey Mary, I really don't know much about your conditions except that hypertension does raise your risk with strokes. But it is usually easily controlled with meds. Just be sure to discuss the drug interactions with your doc. I wish you the best and I'm certainly sorry you are going through so much, I will pray for you! Lisa Z.
Anonymous 22 Feb 2012
Thanks Lisa, I appreciate your kind thoughts. My doc still hasn't faxed(new Medicare rule) my script over to the pharmacy yet! Thank goodness he knows I know enough about stuff to take one of Garys yesterday & today. Just hoping the milligrams are the same. Thank you again... Mary
Anonymous 22 Feb 2012
Oh Mar, I so pray that it's the Lyrica and after a week or two your bp goes back to normal. You are scaring the tar out of me as well as Criss!!
Please take your BP several times a day to find out if there are spikes at certain times? Maybe this is stress related, God I pray it is!!
Don't blow this off either my dear friend!! I'm so glad you called your doc right away!! You-know-who wouldn't have done a damned thing, would he?
Keep taking your meds and try to relax. I know how busy you are, but you need a little time off to do nothing. Maybe it will come down slowly if you slow down a bit?
Love you lots n lots!!
Lara
Anonymous 22 Feb 2012
Thanks Sis, & you know me well enough for sure. My stress about me bro is gone. Gave it away to my other bro! Yes, don't know for sure how long this has been this way, as it was just 2 days ago I thought to take my blood pressure. Usually so low I get light headed upon standing! I am just such a medical wonder the docs don't know what to do with me anymore! My doc came in the room & didn't even ask for my usual list! Just "what have you been doing"? "your BP is dangerously high"! No sh*t sherlock! That's why I am here! Just had GB check it & it was lower, only 188/ 90 this AM. Peed it all out I think, but tis still high & that Furosimide is awful! Running to potty ever 15 minuets, but still am swelled all over, & my beloved Lyrica is out for now. BooHoo! Just got a 90 day refill too! I promise to take very good care, but wondered about this brain diagnosis with HBP. Loves ya more than Lyrica, Mar
Anonymous 22 Feb 2012
Mar, I know you are in the loo constantly getting rid of the water, but please, drink as much water as you can. That will get rid of the water weight, water itself is a diuretic, add some lemon and it works even better. Just sip water all day, but stop around 5pm or you will be sleeping on the loo!! I promise this will get rid of the lyrica water weight situation!!
Please don't ignore any other new symptoms as well.
Love ya more than my new purse!!
smileyhappyAnonymous 22 Feb 2012
Thanks Lynne, but I thinks me SOL! Need to go to the professional side & post my symptoms if they would let me! Thanks for the kind thoughts. I really appreciate it more than you'll ever know... Mary
DzooBaby22 Feb 2012
Drop the Actifed tooMary! Pseudoephedrine will shoot your pressure through the roof if you have high blood pressure! Actifed has pseudoephedrine as the decongestant I believe and that is a no no with HTN. I cant believe they didnt jump on that one first for you to d/c. All the water retention is probably what is driving your pressure up along with all of the stress you have had lately. Watch your caffeine intake too-cut out all you can! As you know, HTN or hypertension increases your risk of stroke. Whether or not the vasculitis raises that risk, I'm not sure. Let me do some research on that one and get back to you! I had to quit Lyrica myself because of water retention. The furosemide should help to pull off all that fluid, once you are diuresed, the constant peeing will stop.
DzooBaby
22 Feb 2012
Mary, I'm going to say yes, it probably can raise your risk of stroke having both coditions together. The vasculitis can damage and weaken the blood vessels and if your pressure is high, it can blow at those weakened areas. I know that is probably something you suspected but didnt really want to hear so I'm sorry! It doesnt mean a death sentence though. You just do need to do all to get that B/P under control. Cut out salt and caffeine like I said, as much as you can anyway. You do need some sodium to function but you get enough from your food-just dont add salt at all. Keep the shaker off the table and dont add while cooking. Try to keep your stress levels down as much as humanly possible-I know, right? Do meditation or whatever to help quiet the mind when you can. I'm going to add a copy of info I found. It says that vasculitis can be related to your lupus and it also has to be CONFIRMED by biopsy just as someone above said.
echo08
22 Feb 2012
Wow (again!). You might actually be more complicated than me! My sis is suggesting we get our own "House" episode :) thanks 4 all the info u added. Ok, first, DzooBaby rocks so everything she says! So much has been going on since I last checked. Definitely yes 2 taking ur BP *and* pulse multiple times/day. I mentioned that my hubby set up a spreadsheet that helps me keep track of not only what I take but when & when I can or can't take something? Same thing w/ BP & pulse. My portable one gives me BP, pulse, & any irregularities in pulse. I do this 4x/day, put it into the spreadsheet & cause I think most Dr's are lazy, lack curiousity or are good but overwhelmed & have 7 minutes 2 see you, here's the cool part - set up the spreadsheet 2 take the data & calculate the mean, median, & mode. This is what finally got my cardiologists attention.
pledge
17 May 2012
Appreciate your point of view Jerri. Regards, pledge
Anonymous 18 May 2012
Thanks for the reply Jerri. I have gotten the HBP under control with furosimide. In fact yesterday I checked while at the pharmacy , & it was almost too low at 110/59. Will be chicking back in with my PCP about that. I lost over 22 pounds of water weight on the furosimide & am feeling somewhat better. I know my brain doesn't always work quite right is why I went to a neurologist in the first place. The problem is I am in an HMO & can only go to certain doctors. He is old ,& was going to retire, but there just aren't many around here, so he kept his practice open. I don't like him at all. His answer was "Gee, I just don't know what to do about your brain problems, here, try some aricept". Well after reading the insert it went straight away to the garbage. I am also a caregiver for my husband who has too many problems to list at this time. I am doing better, but appreciate your insights... Mary
4 Apr 2012
my husband has vasculitis of the brain. It started 1y 1/2 ago only diagnosted in Feb. He went down hill very fast. Working on his house a year ago, now on his death bed. Hes been to OSU and Cleveland Clinic. This is so rare. The Drs. around here dont know how to deal with it. So get help ASP I hope you have some one that knows how to treat it. Good Luck
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Thank you sweetie. I am trying to get Dzoo & my Happy Hippie friend to read it! How are you doing?
Better then you!I also called on are hippie girl just now..wish I had an answer.this is what you get from private school education... laissez les bonne temps roulez ..ont événement sure i épelles That correctly!!! Xo,c
Lol! Thanks, hon... Mary
I am rite here... waiting for some one to reply..if you need me,always,I only speak French after 8p.m... but if you get bored I can give you some more bad French!Xo,c
Just in case you may have missed this it's fat Tuesday thus the remark in French... is anyone there?lol,c
Laura...
Yo vivo en la Florida. Nadie hable frances aqui`, solamente espan~ol. Benvenides martes puerco!! How's that for lousy Spanish?? Used to be fluent!
OK Girls... my phone started crawling to me... thought I'd best see who had a question. C, your French is better than mine, but I bet I can get you in Italian.
Seems we have a messy conundrum here. Hypertension and vasculitis of the brain. Hmmmmm ... OK... from my books and personal experience, hypertension is a prevalent problem here, over-weight being a big factor (not always) and genetic predisposition being another, hypertension causes a type of vasculitis, which simply means inflammation of the vascular of the entire body. And I wanna know exactly how your doc came to the conclusion you had vasculitis of the brain? Did he take your B/P around your head, were your eardrums paler than normal from lack of reasonable blood flow. More importantly, did he give you a pretty pill to bring thee numbers down before you stroke out, whilst we figure it all out?
I have a lot of questions that need answers to before I start rifling through your medical record dear.
Expand this post...
I have HTN too. You don't want to know what it goes up to when I am mad.
So, Mary sweetie, I'm gonna reread your profile and write down questions to ask you and I will try to help. But first sleep, my Fentanyl has finally kicked in.
The Hopefully Helpful Happy to Have Groovy Hippie Friends,
Laura
No my sweet hippey friend! No history, just water weight, not overweight. Eyes are about swelled shut & in a Lupus Flare me thinks too. The vasculitis is an older diagnoses (of the brain)from an MRI ordered by my neuorlogist. I am just trying to not look like the Pillsbury Dough Boy, & get the water retention down, Been in the bathroom more today than on the computer. I haven't been taking potty breaks, I've been taking computer breaks! Ankles swelled quite a bit & just generally all over! That's the reason I decided it was maybe time to check my BP. Got me! I'm just worried all that pressure might be like a pressure cooker & blow my lid off! HELP? Get some sleep & will talk to you in the morning... Mary (I'm headed that way myself)
Now that's she is finally asleep ... I could beat her at Italian too!, lol
Sleep tight Mary,xo,c
OK... I give... only spent a few months in France and 4 years French in hs, but spent longer time in Italy and took Spanish in my parochial school years, so whilst in Tuscany, was told by the Italian cuties to pleeza speeka Anglais ... oh no! I said loudly "wheerze mia esspresso, I need quatre of them, por favor, prego, Mon ami". HaHa!
The Hipster... least I had a good time with very good and fun people!!!
Love u 3~~~~
Me no speaka French other tha a few word here & there, like my favorite Perfume, Toujours moi, & Bichon Frise!(That's my dog, meaning (I guess) curly lap dog)
Muchas gracias, senorita!! Te gusta tambien!!
I agree with C, this is indeed frightening!! Mar, you best keep all doc appointments or I'm going to have to come straight away to your house and drag you by your hair!!
Look how many people that care about you, and you will get more responses!
So, you better change your lifestyle, that way we can all have you for a looooong time to come! 86 the salt in your diet, and anything else that causes high BP!
The brain situation sound quite frightening as well, I must google this to find out what vasculitis is, ugh gurl, you better stay healthy!!!
Love you to pieces,
Lara
WHY on God's green earth didn't your doc order lasix or a water pill??? GRRRRRRRRRRRRR, all that water in your wee body most certainly will raise BP!! I'm so angry I could scream!! Call that doc Mar, and beg for a diuretic! I don't know much, but I do know that all that water weight will cause BP to increase, damnit!!
Furosimide is a water pill or diuretic. He knew Gary had it so I could take his in the meantime. Oh it's working on part of theis fluid, but it stays the same. I lost 4 pounds yesterday! Love you too, Sis... Mary