Can chiari affect your heart?

[Samanthab259]

I went to the doctor today since its so much of a change in my heart rate whenever I stand or put my hands above my head I have to have a echo. Has anyone else had the same issues?

[Rylanesmom]

Make sure to check if your rheumo diagnoses and treats EDS too.  I found several that did not before I found one that does.  I have EDS diagnosed by NS and can't wait to find out whatvtype of abnormality I have lol.

[selmaS]

  Well we have them here, but try getting in....crazy is all over...trust me....

Hmmm  so it seems they may have checked it all...did they do the TPO antibodies too?

...no rhuematoid Drs?

[Samanthab259]

He tested my t3, t4 & tsh. Ive asked my pcp & ns for the eds. Where I am from we dont have a ns,nl or none of that, We have to go out of town. We only have pcps & obgyns & normal surgeon only one of them also one pediatric doc.  . Crazy huh.

[selmaS]

  When they tested ur thyroid did they test for an auto immune thyroid disorder or just the TSH?...it can appear normal if they only look at TSH and that will not help u if u have Hashimoto's .....I went a few yrs not being able to figure out the problem...then found out they were doing the wrong testing.

Who did u ask to test u for the EDS?...Did u go to a rheumatoid Dr?

[Samanthab259]

I have asked so many times to be tested for eds everyone looks at me and says no you dont have that. Ive tried to tell them they are different types they dont seem to listen. I am having a echo on wed & my doc said we would go from there. I again brought up eds he said well lets handle this then we will see about that. I said ok its really important that I know. I had my thyroid checked it all seemed normal one was a little low but doc said dont worry. I have been having issues when i get up from a chair or walk some my head feels as if its going to bust I thought it was the pseduo bothering me. My heart does race sometimes.

Zygy- It seems like we have it all huh LOL My pseduo twin will still be my twin for awhile. Mine isnt going anywhere  :)

Thanx everyone for your input.

Sexybare- I have anger issues as well. I also cry alot. I honestly think its because I deal with so much pain & I feel others just dont understand it. I try to be nice but it seems people press my buttons before I know it ive said a few things I should had kept to myself. Ive had the surgery twice I have seen a improvement on my anger my not my emotions. i wish u the best

[selmaS]

  Bcuz of my TC I never tried to do things flexible in nature as my back would bother me or my head, my neck etc....so, it was not something I tried and I would have bet a $1000 bucks I didn't have it.....

U may not want to know, but it could be the reason for ur pseudos.....

I understand it is overwhelming....I have them all too, the thyroid, TC, EDS, Chiari...and who knows what else....but, I know I have to figure it out to feel better...regardless how frustrating it may be......

  My mom's family has the young looking skin too....makes me wonder .....sigh....

[zygy2]

:)  I prefer not to know any more :) LOL  Interesting how many things are connected to Chiari.  EDS was fun to read more about, one of the things I found that caught my attention is the "young Looking Skin"   My grandmother always looked young, my mother looks young and really I assume she has Chiari, she just has never looked into it.  I know I was really flexible when I was young, I don't feel I am now though.  I have had my orthopedic Surgeon comment on how loose my joints are so who knows.  I bruise easily and have flat feet :)  So some things make it look possible but like I said, I don't really want to know :)  I guess if I did that it would be mild and not a big deal for me.  I try to keep my strength and keep healthy so the best I can do is low impact and keep a healthy weight!  With the POTS and Hypothyroid I already feel like there is enough to think about :)  I am thrilled though not to have serious healing issues!  My patch was a problem but at least the incision was not.  Can always be worse I guess :)  

[selmaS]

  Those anger issues are bcuz ur brain stem is compressed....it affects mood, as well as emotions....and it is not easy...I try to walk away when I feel it building up so there is no fall out on others...sometimes they push my buttons wanting to know what is wrong when I need to be left alone...their own fault I say...lmao...I warn them...but eh if they don't listen what can u do?

Just do what is best for u, try to relax the best u can : )

[selmaS]

  Here is a link to how to take ur own pulse-

   http://www.wikihow.com/Check-Your-Pulse

[Sexybare]

Hey i referr to myself as a time bomb waiting to go off. I have major issues with managing my anger and emotions. Any suggestions?

[selmaS]

  U can learn how to check ur  pulse and u can get a small machine to take ur BP.....I have one.....

But u can also ask the Dr each time u go, what ur vitals were and write them down so u have a record as well.

[Sexybare]

How do you check our own pulse and bp? Lol im clueless in that area.

[selmaS]

  BTW- it can cause issues with rejection and cause leaks....so those with EDS can have a more diff time with a dura patch then others....and zygy u had issues in this area, so it makes me wonder all the more.....

[selmaS]

  Did they ever test u for EDS....I was the first to say I could not possibly have it, yet I do...so do not be too quick to dismiss EDS....and it does not mean u will have all the symptoms listed, they mention a few more common ones, but there are many....I heal fine, just slower then most...but to me, it is my normal....so, do have it checked.....

  Same to u Samantha...get checked rule it out!

[zygy2]

Hi Samantha :)  They diagnosed me with POTS, I guess it was something that I thought was there so dealing with it is no big deal now.  Can be annoying at times but I have felt this way for a long time.  My NS said the POTS stuff would not go away with surgery.    Really important to watch your BP though and keep track of it to show them!  I had not read about EDS being related to POTS, I know they tell me loose joints but I have no issues with healing so I don't think EDS is a problem for me.  After surgery though they could not get my heart rate down and even though I had mentioned POTS before to people no one ever listened and after days of a crazy pulse the NS finally came to me and said "I think this is POTS" I just laughed!!! :)  Just accept it Samantha, we have lots of crazy stuff :)

[selmaS]

  Keep in mind not all heart palps are POTS symptoms...Chiari can cause them as well....this is just another Ave to explore if u had surgery and r still having the issue.

Always keep records of ur BP and  all vitals when u see the Dr....it is easy to see if there is a pattern.

I write all mine down in a book that has all my visits in it...weight, temp, and BP...always!!

   Also note POTS is related to EDS...so if u do not have EDS , then there is a even better chance u do not have POTS.....ICP should then be looked at.....

  We r soooooooo complicated...sigh

[drewlevas]

Wow. POTS is somthing complicated and scary!

My hearth goes weird to something it goes a 120 when I'm resting witha lot of PVC and something I can be walking and I will feel all weird and take my pulse and it stands at 36 to 45 pbm!

I'm suppose to have a follow up ecco in a few months, I had a stress test done 2 years ago and everything was fine! and I had an ecco 9 month ago and they said it was good. Latter my doc told me that my heart was at 60%, I'm not sure wath it meens but I'll belive the doc when she says that's she not worried.

[bookworm79]

Wow, I can apply 99% of the symptoms on that list to me...of course some of them are on the symptom list for Chiari and also anxiety.  I think it's just easier for the doctors to just lable you an anxious person and be done with you.  Frustrating.  And yep, Selma, sure enough, I was "diagnosed" as having GAD as well.  And what the doctors don't understand is that I don't lay around or lay awake worrying, I just can't freaking breathe.   That's it.  But apparently to these jerks I've seen JUST having breathing issues is enough to slap a mental health issue on you.  Sorry.  I'm having an off day.  Actually to be honest, I've always been a very meek person, non-confrontational, stay in the background, afraid to make waves or make my voice heard type of person.  Boy has my personality changed since I started having symptoms in the last 3 years.  I think you can acurately say I'm a very angry person now - I can still be nice, I'm still compassionate, but it does not take much to tick me off.  It's like I walk around now daring anyone to say anything to me.  So not who I was 3 years ago.  Don't know whether it's a blessing or curse.

[selmaS]

Postural orthostatic tachycardia syndrome (POTS, also postural tachycardia syndrome) is a condition of dysautonomia, more specifically orthostatic intolerance, in which a change from the supine position to an upright position causes an abnormally large increase in heart rate, called tachycardia. Several studies show a decrease in cerebral blood flow with systolic and diastolic cerebral blood flow (CBF) velocity decreased 44% and 60%, respectively. Patients with POTS have problems maintaining homeostasis when changing position, i.e. moving from one chair to another or reaching above their heads. Many patients also experience symptoms when stationary or even while lying down.

The hallmark symptom of POTS is an increase in heart rate from the supine to upright position of more than 30 beats per minute or to a heart rate greater than 120 beats per minute within 12 minutes of head-up tilt.

This tachycardic response is sometimes accompanied by a decrease in blood pressure and a wide variety of symptoms associated with hypotension. Low blood pressure of any kind may promote the following:
lightheadedness, sometimes called pre-syncope (pre-fainting) dizziness (but not vertigo, which is also called dizziness)
exercise intolerance
extreme fatigue
syncope (fainting)
Excessive thirst (polydipsia)
Chronic or acute hypoperfusion of tissues and organs in the upper parts of the body are thought to cause the following symptoms:
cold extremities
chest pain and discomfort
disorientation
tinnitus
dyspnea
headache
muscle weakness
tremulousness
visual disturbances
Autonomic dysfunction is thought to cause additional gastrointestinal symptoms:
abdominal pain or discomfort
bloating
constipation
diarrhea
nausea
vomiting
Cerebral hypoperfusion, when present, can cause cognitive and emotive difficulties. Symptoms that persist in the supine (recumbent) state are difficult to attribute to "cerebral hypoperfusion"
brain fog
burnout
decreased mental stamina
depression
difficulty finding the right word
impaired concentration
sleep disorders
Inappropriate levels of epinephrine and norepinephrine lead to anxiety-like symptoms:
chills
feelings of fear
flushing
overheating
nervousness
over-stimulation
Symptoms of POTS overlap considerably with those of generalized anxiety disorder, and a misdiagnosis of an anxiety disorder is not uncommon.

[Sexybare]

I dont know what pots is either. Learn new things everyday here. I have been labeled as having anxiety for about 8 years now. No med have worked and eventually i just quit takin them. They gave me an inhaler and all sorts of things that never worked. Now that i know i have chiari and its related to that, it explains it more. What isnt affected by chiari? Lol

[bookworm79]

See my heart stuff is what gets me labeled anxiety.  I tell them how my heart rate is like 200 after walking lightly at 3.5mph on a treadmill for only 1 minute and how I feel like I can't breathe and IMMEDIATELY get told it's anxiety.  So frustrating.  Glad to know I'm not the only one dealing with it....though not happy anyone has to deal with it.  I'll have to look up POTs.  Don't know what that is.

[selmaS]

  Many with Chiari have related issues, such as EDS, POTS and Thorasic Outlet syndrome...all can have an affect on the heart rate....even an auto immune thyroid issue can affect that and many of us do have Hashimoto's.

I used to get the heart palps b4 surgery, but have not had them post op....we are all different and it is best to have ur heart checked...I did, and that is when they found the polyps on my thyroid.....

Better to be safe, and this way u have a record to look back to and compare if u do have ne changes in the future.

   "selma"

[linnielou232]

I am 16 post op and I have to say I still have this issue.  I actually had an MRI flow study done recently and every thing came back good.  My dr mentioned to me that our bodies take a lot long to recovery than what we want to except.  Now I have to agree with him after having my study done.  I even have went this past yr to my PCP and had my hormones checked because I thought I was going through mentapause, but nope, just fast heart rate.  They prescribed me xanax, so I take one when I feel this coming on. rapid heart rate.  Hope this help's you some what.  I know it's scary to experience this.  Must be our bodies recovering.  Hope you find answer's.

[Rylanesmom]

Pots is common...I am having ecco too read about pots