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1059090 tn?1254466801

heart problems with chiari

hi everyone,

ive been having heart problems recently, the beat is slow then speeds up, my blood pressure ends up being 204/110, went to hospital, was sent home,
now awaiting a 24hr heart moniter, i get so lightheaded, and weak, heavy, if i take a step of stand, or even roll over in bed, it becomes hard to breath,
I have had this alot, but had never had a BP, or heart listened to while it happened, i dont normally go to doc, but i felt so bad, i decided i should go, which i found interesting as it maked me wonder if this happens every time,

my question is....... Do you get heart and Blood pressure problems with chiari and if there is anything that can help this effect, of relieve it????????
at the moment i seem to have problems one after another. lol
Best Answer
1179332 tn?1297478990
Just read through the posts...I wanted to add that b4 I was dx, I had instances of my heart absolutely racing, pains in the chest etc. By the time I got into my dr it would subside so I gave up even trying... In my 3rd pregnancy I remember taking my pulse and it was something like 120 and it was a resting rate. I really know how you feel when you described the heart jumping out of your chest feeling... I couldn't walk from one room to the other w/o being out of breath. I would actually avoid activity so that I wouldn't start it up again when I finally felt like I could breathe. This would go on and off but when it happened it could be up to 5 days and I had trouble sleeping at night b/c my heart pounding would actually wake me up. I would feel like I couldn't breathe enough to keep up with my heart (if that makes sense). I had a stress test done at a period when I wasn't having the issues and it came out fine.

Now post op, I haven't had any issues to that degree, I actually didn't even think about it now until I read your post. Also, after surgery I found out that I had Hashimotos (auto immune thyroid disease) and sometimes you run from hypo to hyper (which can cause heart racing, breathlessness ect.), so you may want to get that checked out. Or you could be hyper (Grave's disease) in which you most definitely would have those kind of issues. So if you haven't had your thyroid tested, I would do so. I am now getting the Hashi's treated properly so I am wondering if that has helped it for me.

I hope it gets figured out b/c that is a really horrible feeling!
Carolyn
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1179332 tn?1297478990
Well I'll give you what I know...mainly advice from a friend of mine...

Your TSH could still be lower and should be...I didn't feel better and notice the weight start coming off until it was at 1.2 and my ENDO said it definitely had to be below 2.5..so yours is still too high.

Where there reference levels listed on your report? There is different comparisons depending on the lab.

For instance my reference level was 600 so very high!!

You want your T4in the top 3/4 of the range and your T3 close to the top (but not over) this is according to my "thyroid expert"

They should have done your free T3 b/c for some ppl the problem is converting T4(the thyroid hormone) into T3(which is actually used in the cells)..so they should have made sure there wasn't an issue there.

For Vit D...we do supply our own from the sun ..but if yours is really low it could also be that you are not absorbing the Vit D properly in your body. This is cause for concern b/c it can signal other issues such as metabolic disorders or digestive disease...so the SHOULD be checking it out. Plus, Vit D has been proven to be very important for nerve impulses...so you need to make sure you have a sufficient amount!!

As why they don't just do the right tests w/o us asking...I would give a million $ for the answer to that one!!! I keep hitting that wall over and over again..

Carolyn
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3 Comments
I no longer have problems with my blood pressure.

Chiari people have sleep apnea problems that make their blood pressure and pulse to go crazy.

I had decompression surgery in '08. The tonsils were 12mm. They coagulated my tonsils to bring them up. I've had a lot of trouble with my blood pressure going from 210/110 down to 80/40 and my pulse would go from 46-150. Dr's were very cautious with blood pressure meds because of this.

I found out that sleeping with my head elevated and using a blow-up airplane pillow, that is only partially filled, around my neck works. The airplane pillow keeps my neck steady and keeps my head raised on the 3 pillows.

The bottom pillow is stiff and the other 2 are soft. Otherwise I wake up with headaches if the pillow were too stiff.

Blood pressure is now steady every day at 120/72!

Hope this helps.
Jill
Hi and welcome to the Chiari forum.
You are right sleep apnea can and does affect BP for many with Chiari but many also have POTS and EDS with mitral valve prolapse.....and a few other issues that can also affect BP .....

I am glad you found a way to help regulate yours..

May I ask, did you have any other DX's of related conditions?
hello everyone, i was just recently diagnosed about 3 weeks ago after I was taken by ambulance because of stroke like symptoms at work. CT scan was clear, MRI showed the chiari. Was dx with htn and tia..as well as the chiari. I was referred to a neurosurgeon who said repeatedly that my symptoms had nothing to do with my chiari. I have headaches that are manageable, my main problem is my bp. I cant even go into grocery store right now because anytime I move around or walk, my bp goes through the roof and my head feels like it is going to explode..throbbing and pressure.  I can control it by sitting down(returns to normal?) when im lying down it is 85/55. im so tired and haven't been able to work because my job consists of me being on my feet 10 out of 12 hours. I feel like my neurosurgeon was not familiar with chiari and I was blown off. currently on bp meds as well as two others. I am not myself and something is wrong when I move around. My regular doc has now referred me to a cardiologist. Should I find another NS that specializes in the Chiari? Does this sound like it is related to Chiari? opinions?
Avatar universal
i have no idea =-\ i was hoping Carolyn can help me out. I'm looking through the thyroid disorders forum for some help. Idk why my endo didnt bother to run ft3...These docs are so freakin lazy!
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1059090 tn?1254466801
is your results good or bad, im unsure about normal levels.



Helpful - 0
Avatar universal
Got my results! TSH=3.679, FT4=1.1, Antibodies= TG20.00 TPO 10.00 . No FT3 was done IDK why...but they told me the ENDO is not sure if I have PCOS and they said my vitamin D was way too low so they're giving me a prescription for 5k units =-\ don't we get vitamin D from the sun?? ( among other things)..would explain why i'm so pale
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Avatar universal
You see that makes more sense. I really need to get a new ENDO. Mine told me to go back in 3mos then after that he didnt give me a follow up until i asked for one this yr. I think it just might not be damaging my thyroid to that extent. My hair falls off in handfuls too my tub gets clogged now =-( I noticed it happening more after i had my children especially right after childbirth (the months following) I noticed it doesnt grow as fast or as much as before either so i keep it at shoulder length...IF i dont manage to chop it off for summer =-D
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1179332 tn?1297478990
Well if they were high...you can bet that it is affecting your thyroid. You said that they did free T3, T4 testing too? Sometimes the TSH levels are not accurate.

I think the hypo/hyper swing just varies person to person. I would get hyper for several days and then get really tired and lethargic after that for several days. The antibodies attack in waves and that affects how your thyroid functions. My AB were extremely high too and my GP and ENDO said it is just matter of time until I lose all Thyroid function so they have to keep following it. I went from 50mg to 75mg (of synthroid) which is holding me now at 1.2 but they expect that eventually I will be on about 125mg.

Maybe it hasn't succeed in damaging your thyroid yet? But they will need to do a follow up test every 6months b/c it will at some point.

I have half the hair I used to...it won't grow past my shoulders anymore when it used to go down my back. I clog the shower drain on a regular basis...even with my TSH where it is now...it still comes out in handfuls.

Carolyn
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Avatar universal
neava: yes i'll have to follow up myself. Idk whats the deal w/these doctors!!

Cmoeller: I'm going to call and try to get them. You see I don't get that, the way it's up and down. I know it can be hypo or hyper back and forth. My doc told me it can go hypo a few months then hyper a few mths. I wonder does it happen from wk to wk? I just find it odd that supposedly my blood work is always "ok:" I really think that my heart racing and my hair being so thin when it was super thick (and i had a lot) is caused by my thyroid. They did test the antibodies. Idk what they look like now but the last test they were high.
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1179332 tn?1297478990
Sorry to nose in on the conversation...

But when you get any blood tests done, make sure you request a copy of the results. It is a fairly simple process in Canada...I'm sure it is easy to do in the states too. I found out I had Hashi's from the results I received way ahead of when my GP finally decided to contact me. I get ALL my results now from everything.

My dad has the same thing...a large goiter but all his thyroid tests came out fine. He recently had bladder cancer and so they did do a FNA but it came out cancer free. I still don't buy it though...I think they just tested his TSH at a time where his thyroid was functioning ok. With Hashi's it will let up and your thyroid does sputter to life here and there, it happened that way with me for awhile b4 it finally went downhill all together. Did they test for TPO antibodies?

I actually have a followup US tomorrow on my thyroid to see if the nodules have got any bigger..

Carolyn
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1059090 tn?1254466801
thats terrible, maybe u have follow up yourself, wouldnt the results go to gp?
thats what happens in nz.
thats still not good, maybe they didnt find anything



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Avatar universal
Well he told me i had a goiter and my thyroid is enlarged BUT my TSH, Free t3 and t4 are ok...the last they checked. My friend recently went through thyroid cancer. they removed her thyroid. I'm not saying that I might have that but at one point it was suspected bc i had a mass. It went away and so they didnt biopsy my thyroid. My friend tells me that she felt a lot of the symptoms i'm feeling w/the exception that her neck was very swollen. So i'm going to keep pushing for that too. I just went to the specialist 3wks ago and they still havent called me w/results.
Helpful - 0
1059090 tn?1254466801
i am surprised you havent been treated, i think thats terrible, that sort of thing should dif be treated, when do you go?
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Avatar universal
lol ok you dont want to spend the night in jail so calm down lol but i do know what you're saying..i dont want to leave until he tells me he's gona run more in depth tests. and ama go back to my endocronologist (mispelled) for hashimotos thryoiditis..i'm convinced they have to treat it!!
Helpful - 0
1059090 tn?1254466801
good on you, ask for more thats what im doing when i go to NS in two weeks, im not going to leave until he does, lol i will be draged out by police or something, but i do like their uniforms,

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Avatar universal
You're welcome! All I've ever had is a plain MRI. My next NS visit I'm asking him for more. Last night i was at an aunt's house and i mentioned that if i dont get the help i need from a specialist here i have a friend in chicago who says i can stay w/her and she can  help me out. My aunt said " AND YOU'RE GOING TO CHICAGO?!! JAJAJAJAJA" yea that went great lol. I'm used to it. Thanks for giving us a little more info Selma =-)
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620923 tn?1452915648
COMMUNITY LEADER
No worries : )

I know the drs really should explain what is  going on...the members here explained a CINE to me b4 I had mine, so I knew what to expect.....

"selma"
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1059090 tn?1254466801
thanks for explaining that, about the BP, whoo i never knew that, im so exiting that it been explained, lol
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620923 tn?1452915648
COMMUNITY LEADER
HI...oh I totally get the family thing...I had a drop attack in front of my mom, I wasn't taken to the drs for it either....but when I went myself, they gave me prozac....so, we thinks drs give us the run around now...

LOL...I always said my were like ostrich's....lol... buried their heads in the sand...so really similar....

When u had ur CINE MRI the clip is added during the second half of the testing and is used to monitor ur BP...if the CSF moves in rhythm with ur BP (blood Pressure) then u most likely have a blockage.

I hope that helps u understand it a bit more : )

"selma"
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1059090 tn?1254466801
i all

thanks selma and gmaldonado for your  support, i love coming on here, and knowing that im not the only one who has problems or feels that way, even though i would perfer if none of us were here at all,

with my family everything gets put under the rug, when i was a kid there were i few things that i did, which now dont make since and why my parents never took me to get checked, but oh well, i guess they didnt think, the good thing that has come out of my family showing their true colours is that, i now know how not to treat my own kids, so i must thank them for that, no seriously, if in anyway it helps me be a better parent, than yeh i thank them,, still ***** for me lol

when i had  an MRI and they wanted to check my fluid i had a moniter put on my finger, (i dont know how that checks it) but thats what they told me. seems dumb now that i think of it, sorry you werent feeling very well after MRI, i hope you are doing beta now.


i went away last night without the children, it was just me and husbsnd it was great, but today i have muscule weakness, i hate that when you go away or do anything you pay for it later, but atleast i am relaxed, just picked the kids up, that was sad, i dont get breaks very often maybe once a year, but its good to be home, now i can get over the travel.

thanks again everyone for your support, you are my second family
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Avatar universal
I had an MRI of my brain today (thought it would be of my spine...guess not) ? 1. will a plain MRI of the brain show CSF blockage? Syrinx? ( in the portion of the spine viewable?) 2. Does Iodine make you feel lightheaded?..I havent had an episode of my heart racing for more than 5mins...and today it seemed after i had the MRI I had to go straight home instead of work and lay down for about 2hrs cause my heart was beating faster than usual.I'm not sure if it was my plain ole chiari-ness or the iodine...
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Avatar universal
Thanks! I'll look at em when i get the chance =-)
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620923 tn?1452915648
COMMUNITY LEADER
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620923 tn?1452915648
COMMUNITY LEADER
They r in the Health Pages, here is a general link to all the pages

http://www.medhelp.org/health_pages/list?cid=186

and here is one directly to the  abbreviations

http://www.medhelp.org/health_pages/Neurological%20Disorders/Acronyms-and-computer-short-hand/show/509?cid=186

LOL
"selma"
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Avatar universal
yup HUGE. 0o0o I like the riverwalk but Ive lived here more than 4yrs and have been there twice in the timeframe lol well now that I know your abbreveviations I'm not lost and I ahve no issue with them =-D ...wheres the list??
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620923 tn?1452915648
COMMUNITY LEADER
That was it San Marcos...fabulous place...and HUGE...like most things in TX...haha

well the trip from Austin down was pretty flat...we went to the Riverwalk and the  Alamo.

LOL...Oh my, well a few have an issue with our abbreviations....but we do have the list : )
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