heart problems with chiari

[neava]

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

[Wvchiari]

I have read several articles regarding this. There hasn't really been enough research, from what I have read, for them to say they are linked but I can tell you what I know from basic functions. The brain stem (which is often crowded with Chiari) controls several major autonomic functions. Such things are hearts electrical activity, blood vessel size and blood pressure, bronchial diameter( and therefore air flow to the lungs), Digestion, and other body actions that we do without thinking. So in my opnion it would make sense that they could be linked but I am nit a doctor. I do know that no matter the cause of it, high blood pressure needs to be treated to prevent damage to the heart, kidneys etc. I would love to see so much more research (as I am sure all chiari patients and their families would) funded so we could have answers to things like these. I don't know if I have helped but good luck!

[redkim]

I sometimes get very short of breath, but I don't have asthma.  I went to the doctors and my tests were all normal...sometimes I feel myheart beating, too much...it does scare me.  Usually I notice it more when I get really thirsty.

[denverluv]

I said this in another post but I'm not sure which - I get chest pains and hard to take a deep breath and I have had three ekgs' all normal. Clear lungs. I have read somewhere (don't quote me) that there were instances of people with chiari having a heart attack after turning their head too quickly. I will try to find it again, but I am one who reads until 3 am on this stuff and can't remember where I read it but just remember what I read LOL.

[selmaS]

Hi...I also was having many of those same issues...I am also a mouth breather I have been my whole life...but the heart palps had increased and my drs did echo's and US's to be sure I didn't have a heart condition.

They did find that I had a thyroid issue, which once on meds the heart palps did stop.....there r other related conditions like EDS that can have an effect on the heart/BP and another one called P.O.T.S.

Talk with ur chiari specialist about this and be sure it is added to ur medical file.

"selma"

[redkim]

I have a hard time taking a deep breath, frequently.  I feel like I am suffocating and sometimes I get a stabbing feeling on my left side, under my breast and near my arm pit, that takes my breath away.  When that happens I get the stabbing feeling when I try to breath, then it goes away.  I have had two EKG's, all normal.

[selmaS]

One other issue I forgot to mention is GERD and acid reflux which can cause many of the breathing issues that Kim u mention.....so do see a GI dr if hte symptoms continue, but the heart is ruled out as  a reason.

"selma"

[gmaldonado]

Hi, I used to post here as GAREVALO. Selma I remember you i dont know if you remember me. I lost my password and id and what not. Anyway. I too have experienced all the symptoms you all mentioned. I was reading your preavious posts (neava) and its heartbreaking and i know how you feel because my docs look at me like i'm insane and i'm making it all up. my heart seems to beat alot more than it should..and i too have had ekg's and they're all normal. 2 wknds ago i was driving and had a palpitation and then i couldnt breath..i said to myself you're ok its an anxiety attack..but as i kept driving my head began to ache and my heart was racing faster than 170..had to be faster. I dont know how i pulled over but i got out of the car (my children had no idea what was going on) when ems gothere my vitals were normal but my heart rate was jumping from 80 to 135 w/o reason. I honestly feel there must be some relation to chiari. The paramedic told me that it might just be that as your brain stem controls your whole body. It scares me. I havent had my surgery yet..because i was too afraid but after all the symptoms i've been having i am truly considering it. Oh and neava, my primary doc put me on anxiety medication too. he said my heart racing was probably just that.

[selmaS]

Hi and welcome back !!

Do contact MH and let them know u opened a second account and y....this way they can delete the other account.....but I did check and could not find it...how long since u were on?

When I was in High School I got the palps really bad for a while, then they went away for a while....but over the yrs they came and went a few times....

Have u been to see a chiari specialist?

I am glad u r back!! So sorry u r still dealing with some of these issues....

"selma"

[gmaldonado]

Thanks! I haven't been to a chiari specialist. I am in desperate need for one though. I last saw my neurosurgeon when i had found out i was pregnant (my son is now 4mths old) I don't know why but during my pregnancy my symptoms were not as bad. Where did you have your surgery? I have heard great things of dr. Oro in CO but I'm afraid i dont have the money to travel out of state. I guess i need to look into organizations that can help me. I am so desperate at this point! My surgeon told me it was up to me, how much i could take before i decided to get the surgery. He said he recommended it but he's not a specialist and I want a second opinion.

[selmaS]

I went to TCI in NY....

The health pages does have links to orgs that will fly u free of charge...and we do have our dr list here for u to research and see which ones work with ur insurance and how u may be able to arrange to get there.

I believe there is a dr in TX...not sure if they were a peds dr or not....but do research first....I am sure u will find the right dr for u.

A second opinion is good and should be from a chiari specialist....have u had the CINE MRI?Do u know if u have a CSF blockage, overcrowding, tethered cord, a syrinx? EDS?
http://www.medhelp.org/health_pages/list?cid=186
There r many pages with in the Health Pages with helpful info for chiarians.

Again welcome back  : )
"selma"

[neava]

thanks for comments, this is my third time typing this out, my arms are wobbly and a keep pressing wrong buttons, lol

But thank you,

im back to see surgeon next month, but im unsure i will want to have surgery as, im not sure it will relieve anything, it might come back, or cause more problems.
plus he might not want to operate, he decided not too lasttime before i had my cyst removed, or that could of been the nuero specialist, he hasnt been straight up with me.

OMG i just feel bad all over, i have trouble walking to the other end of my house and its only a 120 m2 size hme, my heart feels like its going to jump out of chest,
i can normally dance for hrs as i teach latin and ballroom dancing, this is not right,

SELMA..... do you remember telling me to get checked for a hiata herina???? well i had a camera down the throat a few weeks ago and it was clear, but i had a scan and it showed gallstones, so that explains my chest pain, so thanks for that i would have just left it, until an ambulance had to get me. lol

im waiting for a lapscopy, in the stomach to check women bits as im having more problems. I must say im tired and fed up, this is so frastrasting,
could be MS, it could be MOTONUERON DISEASE, CHIARI, HEART, does it ever stop,

sorry guys, im so tired with it all and tones of tests which are negative, my doc did say ellimate what it isnt,and have some amo if the specialists to re check brain,

[neava]

ps

my doc also said that we have to rule out heart, and that if theres damage to spinal stem it can cause heart and blood pressure to play up, but the problem with that is they still dont listen,

[selmaS]

I am so glad u went and had that checked and that it was stones and not a hernia....u can pass the stones and then u feel better, but a hernia stays with u....

Did u pass the stones?

I also had my heart checked as well....my BP is and was always on the low side...but better safe than sorry when it comes to the heart !!

"selma"

[neava]

i took lemon juice and olive oil for 7days 15mls of each morning and night, that was a month ago, i havent had any problems since so i think i passed, hard to tell as passed through B/M,
but no problems since so fingers cross

[selmaS]

Wonderful news...u certainly do not need that along with everything else....fingers r crossed
: D

"selma"

[neava]

thanks for your post,

i have been tested with so many things, im not sure weather i have been tested, but i will diff look into to it, you get to a point where you will try anything,  

[gmaldonado]

OMG! i completely and fully understand what you are saying. It happens to me so much. It makes pefect sense. I am in awe!!!Everytime i got to the doc it subsides and they think i had a panic attack. I cant sleep either at times because my heart is pounding. and I too stay away from activity afraid that my heart wont slow down or that I'll pass out from how fast its beating. I'm going back to the cardiologist, but I have a feeling everything's going to look good. i had to go through a chemical stress test and it was horrible. A catscan worth  10 xrays and an echo and some other tests. One thing that I think is ODD is that i too was diagnosed with Hashimotos thyroiditis but w/normal function. My thyroid is enlarged but my blood levels look ok except for the antibodies. My specialist has not given me treatment options, which i think is weird. I would think they have a way to treat it. I wonder if all these things are associated with Chiari. Thanks for your post!

[gmaldonado]

I read some news articles on TCI and I had to question wether or not I should try to get myself up there. But news articles are news articles. Anyway I dont know what kind of MRI i had but it did show the malformation with no sign of syrinx withing the portion that was visible. I'm getting another MRI of my spine to determine if I have a syrinx there. I dont know about any of the other things you mentioned. I am trying to get that second opinion and I thank you cause now i know what to ask. I am so glad that I came back to the community. I need as much support as I can get. My family thinks I'm over reacting and that is all in my head...but it literally is lol but they dont see it that way. ..Not even after i showed them my MRI.

[selmaS]

I know all that happened at TCI while I was going for my eval and surgery and I am very happy with the drs and the care I received....U also need to look at the rag that printed all of that too !
Plus, most drs do have some patients that r not happy with the results of surgery, but this rag went to the patient and instigated the whole thing than others jumped on and it was blown out of proportion if  u ask me.And the issues were not on surgery, but a scheduling issues which was more the Hospital than the TCI drs!

There r several other drs u may be comfortable with like Dr H in WI....??or Dr Oro...?

Well remember there r drs out there that do not understand chiari so we can not expect our families to ....they will have to learn along with us...so invite them to come on here : )

"selma"

[gmaldonado]

Yea, I know what you're saying. I found it hard to believe that the doctors with such reputation would do something like that. like I said its the paper . you NEVER know. Did the surgery eliviate your symptoms? I know there are many risks, and I have yet to bump into a comment from someone with a bad outcome. But I'm so nervous about getting it done although I know at this point I believe i really need it. I have my children who need me and I might have someone to help me care for them but I'm afraid something will go wrong.

[selmaS]

I still have issues, which many of us will, but glad I had it done...so far no syrinx that is a big plus in having it done and I do not have the same symptoms or the degree of them.
I was told I need surgery for tethered cord and a bulging disk causing a CSF disruption...so I still have things going on.

I have not had a drop attack since surgery so there is another plus.....there is no cure, we can get worse after surgery or develop other related issues like pusedotumor cerebri....(IIH)
so finding a dr u r comfortable with is a must and the first thing, then trust what he is advising u to do.

I look at it this way, I did not expect the surgery to eliminate or lessen all of my symptoms  bcuz I knew it took 50 yrs to get them all and it can take up wards of 2 yrs to heal ( I heal slowly so could be longer)...I am patient : ) And very pleased with my outcome.

"selma"

[gmaldonado]

You're right. I can't expect for it to fix ALL my issues. But I know it can help elivate them being that all goes well. I will push to find the right surgeon/specialist. I wish there would be enough research so that people wont get misdiagnosed or left out on a limb waiting for a diagnosis. Docs make you feel like you really need the happy pill!

[selmaS]

LOL...Oh I know...and several pushed them my way over the yrs...we gotta keep pushing them back.....
I am sure u will find the right dr for u...and if we can help let us know : )

"selma"