New pulse pounding Symptom this week, not going away

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Blue Velvyt
Regular Member


Date Joined Sep 2006
Total Posts : 194
   Posted 7/11/2010 1:40 PM (GMT -7)   
Hello all,
 
First let me say, I havent posted in forever. I wish I was the kind of person who was more active in communities like this one. However I come here often and read the posts, strangley for the most part just to ensure that whatever current symptoms I am suffering, others are suffering to.
 
That isnt to say I like to know others suffer, just ike to know its normal and everyone else is going through it.
 
This symptom is new to me.
 
First I am in the middle of a flare up, just dropped 17 pounds this month. Oddly I am on 20 my prednisone, for years this has been keeping crohns flare ups at bay, until they taper me, and then BAM, flare up under 15 pred a day, but this flare up is weird, Im on 20mg, am I building a tolerance to prednisone?.
 
That is not to say that I am still not sick every day, you all know the difference between every day sickness and, ah crap I gotta go to the hospital again sickness.
 
I have had crohns for 10 years, and recently got diagnosed with fibromyalgia and Tardive syndrome ( a mixture of dyskenesia, akathasia and dystonia)
 
I have been on prednisone several years. on and off depending on  he taperping I go through every few months.
I have also been taking valium for about 2 years.
 
I have searched the internet scouring for any link to this pulse poundng to either my conditions or my medications, the only condition that has this listed as a side effect is Tardive, but I have had that for 2 years now without this symptom.
 
Obviously I will be forced to return to my doctors and endure more hellish tests.
 
This pulse pounding now has me bed bound, If I walk or stand it fells like I may have a heart attack, which Im sure is not the case. This has to be some kind of possible long term drug side effect or something to do with my flare up right?
 
Other then those two prescriptions I started taking align about 2 months ago in the hopes it would help, seems like I have alot less constipation on align.
 
Other than that, I have no clue whats going on, if I get up, try to walk or move, anything other then lying down I can feel my pulse beating through my body like Im standing front row at a rock show, mainly the worst of it is in my head, ears and neck. It becomes increasingly difficult to breathe if I move at all now. This just began last week, nothing has changed in years, my GF, has been listening to my heart beat through my chest and says it sounds absolutley normal, I have had ekg's and the treadmill test in the past and come up clear for heart problems.
 
I have emailed my GI, Neuro an primary and am awaiting their advice.
 
On a side note, after many surgeries and horrible experiences at the hospital, even though I am still asking them for help, I am terrified to go back in, it will only mean more usless blood tests, possibly more darn scans, and if I have to drink any more gnarly concoctions for procedures I am goning to just sit and cry.
 
Anyone have this as a problem with Crohns or med side effects for crohns?
 
Wish you all the best, thanks in advance for your support
 
Jon

Roni
Veteran Member


Date Joined May 2003
Total Posts : 2480
   Posted 7/11/2010 8:03 PM (GMT -7)   
How fast is your heart rate? If it's about 100 or more beats per minute, that is tachycardia.
Prednisone can cause tachycardia in some people. Tachycardia can possibly lead to other heart problems eventually.
If it doesn't go away or you have some chest discomfort, see a doc soon. Maybe request a 3D or 2D echo of your heart. Basically it's an ultrasound of your heart and will show how it's working and if there are any mechanical problems.

Don't worry, though, the human heart is pretty tough. Just pay attention to chest discomfort, pounding, and how fast your heart rate is. 60-80 bpm is normal for resting. 100+ is a little high.

tulipg17
Regular Member


Date Joined Jun 2010
Total Posts : 113
   Posted 7/12/2010 8:11 PM (GMT -7)   
When I read this post title I thought to myself " I bet that person is on prendisone"...and you are. It sounds really severe in your case but I just wanted to weigh in and say that I have problems with my heart racing when I take prendisone.

Blue Velvyt
Regular Member


Date Joined Sep 2006
Total Posts : 194
   Posted 7/18/2010 9:42 PM (GMT -7)   
So for those wondering about what night cause this sensation, here is what happened to me.
 
After two weeks of the pulse pounding in my head neck and ears predominantly, and the rest of my body feeling like a pulse pounding coronary coming on.......
 
 
turns out, after relating my symptoms to my Gi (referred me to Primary), Neuro (never responded) and Primary (listened to my symptoms and ran blood tests).
 
She nailed it with blood tests related to my iron, as crazy as this sounds I ended up with Iron deficiency anemia, I have no idea how.
 
I have been sick since 2000 and diagnosed with CD since 2006.
 
My diet is as close to pristine as I can get, water, soy milk, balanced diet in very small amounts every day, vegatables, fruit, beef, chicken, nothing in access.
 
This isn't my first deficiency, others over the years have cropped up, D, B-12 and others, but this one cost my two nights and three days wonderful stay at Kaiser, where I endured 5 blood transfusions, 1 colonoscopy, 1 endoscopy and of course all the Go Litely I could want.
 
So apparently my anal bleeding from a monster hemorroid (monster was the doctors term not mine)
 
This hemorroid is years old and has been bleeding on and off for the last 4 years, kinda sounds like a stream of urine if you push to hard.
 
I have discussed over the years having it removed, but my GI always felt the risks outweighed leaving it alone, and he constantly is reminding me that if the blood color is light blood it was not that big a deal.
 
So as explained to me, by a Pulmunary Doctor durring my stay, iron creates red blood cells, red blood cells create oxygen to your brain and apparently my iron was bottomoned out, I mean close to 0 on test resulsts.
 
Yes that means you stand or walk and pass out, or before you pass out you get lying back down quick, some times I made it, sometimes I didn't. Again not my first experience passing out from Crohns flare ups, but I have never experienced anything like anemia before.
 
So now surgery is on the table to reverse the bleeding, does this make me like BP. leaking without a proper cap in place?
 
So I am home now, taking iron tablets along with the Pred, the fiber, the stool softeners, the valium, the vitamin supplements and so on.
 
I have been home about 4 days now and still feel like I got hit by a freight train. Im exaughsted and find even moving the slightest like wading through a thick brain fog soup.
 
Anyone else suffer some kind of anemia from Crohns?
 
Cause honestly every time I ask a Doctor about these things they often want to treat it as a isolated incident that coul'dnt possibly be linked to crohns, this coming from doctors who were not my primary GI and have limited to no knowledge of my past history except what I tell them in the er or durring the 30 seconds they give me whn they come in to explain thing to me.
 
Anyway, just an FYi, ya get these symtoms, consult right away with your Doc, any Doc, cause it was relayed to me through several of the nurss and Doctors my situation was very serious at the time of check in, but now that thye know what it is it can be managed.
 
There is just no freaking end to this madness, every year, flare ups, defieciencies, pain.....blah blah blah. you all know the rest.
 
Just thought I would follow up in case anyone wanted to know :)
 
Thanks
Jon

CrohnieToo
Veteran Member


Date Joined May 2003
Total Posts : 9448
   Posted 7/19/2010 12:24 AM (GMT -7)   
Thanks for letting us know, Jon.

Is there a reason you aren't on a better medication than prednisone for your Crohn's? Like Remicade, Humira, Cimzia? Did they try you on Imuran or 6MP along w/the pred to try to wean you successfully off the pred?

Is that hemorrhoid the result of Crohn's disease activity in the rectum? Or is it "just" a hemorrhoid?
My computer says I need to upgrade my brain to be compatible with its new software.


lamb61
Veteran Member


Date Joined Jan 2005
Total Posts : 1718
   Posted 7/19/2010 8:53 AM (GMT -7)   
Oh yeah, I've been anemic at some level or another most of my life. It's either been from bleeding - my last flare - or malabsorbtion. Even though you are very good about your diet, your body isn't always able to absorb the nutrients you take in. That's why I'm one of those who has to get monthly b12 injections. My TI was removed in '82 and about 3 years ago I started to need injections because my stores were low.

How lovely for Kaiser's roomservice to give you such a lovely beverage! LOL
 


Becoming undone
Veteran Member


Date Joined Jul 2007
Total Posts : 927
   Posted 7/19/2010 9:23 AM (GMT -7)   
Prednisone can cause your "heart to beat faster" but it can also mess with some of the electrolytes too compounding the issue...for me, it would make me run low on potassium (dx'd via blood tests, DON'T mess with potassium on your own...can be deadly) so I had to get prescription potassium (10 Meq), and it did help the heart not work so hard...just a thought that you and your doc can look into...but you DO have to ask of an electrolyte test to be run, this isn't usually done on a normal CBC type blood test...

BTW, my story was similar to yours...it took over 3 years for me to get off the stuff, and yeah, every time I would taper, BAM, I would flare...eventually I was able to taper down to nothing...been off the stuff since April...
"The earth laughs in flowers"


Blue Velvyt
Regular Member


Date Joined Sep 2006
Total Posts : 194
   Posted 7/19/2010 9:25 AM (GMT -7)   
In the beginning we tried a mixture od meds, remicade, pentassa, entocort, amptryptaline, reglan, phenergran and others I cant remember ( strangley my official kaiser med files I purchased on disc are being looked at by an outside hospital, UC Davis Sacramento) so I cant be sure which other minor meds I was on.
 
The remicade and pentassa were supposed to help, but changed nothing, then my GI decided to schedule the humira, while waiting on that (this was in 2006-07) he decided he changed his mind and wanted to do prednisone instead.
 
There was an immediate difference within weeks on the Pred, so he chucked the humira idea altogether.
 
Problem being we have been dancing with Pred now for 3 or so years, every 6 months we renew the cycle, starts at 20 mg, and then slowly the GI tries to ween off at 2.5 mg per month, by the time I get down between 15 mg and 10 mg the illness takes over again and all symptoms begin rapidly returning.
 
As of my last conversation with my GI he sounded resigned to the Pred as the lesser of evils compared to the misery of weening.
 
So no to humira, Cimzia, Imuran or 6 MP ( by the way I don't know what MP stands for).
 
As for the monster hemorrhoid, all I get told is I have lots of hemorrhoids inside my colon, it seems that one has simply chosen to be the leader, strangley rymeing with bleeder.
 
All male Doctors talk to me like that, like I am a child and when I ask for more clarification they become quickly agitated backing out of the room muttering about not having time to explain "every little thing" to me and they have somewhere else to be, very very busy, gotta go.
 
I have learned to stop asking so many questions over the last ten years from male doctors (this has reduced the tension/anger sessions I had for so many years going through 3 other GI's), I have never had this problem speaking with a female doctor before, for some reason female doctors seem to want to listen to all my symptoms and act accordingly, unfortunatley all my female doctors are nutrionists or for instance my primary.
 
Is it just me or is the Male Doctor ego so large they can't possible be bothered with mundane questions from their patients or be questioned on their judgment calls in regard to meds or treatments?
 
As for now I wait for biopsies to return, all Doctors who worked on me this week promised they were in direct contact with my Primary GI and he would get ahold of me soon. I have a direct line to his assistant who swears she left him an urgent message last week. No word yet, I assume he is waiting for the biopsy results from my colonoscopy and endoscopy before committting to anything, but then he could be golfing for all I know.
 
I will, with any luck be discussing all these things when I am able to speak with him, but it is like talking to a stonewall sometimes and truth be told I can hear the resignation in his voice, like he is done with me already and tires of my endless pain and misery discussions with him.
 
I am now on SSI and Medical now, broke as hell, supported by my wife of 15 years and my best friend is a heat pad believe it or not. It is the hottest one I could find on the market (thermophore I believe is the company), I just lay it over my abdomen area for hours at a time. (Blessing or curse I am intollerant to all narcotics and believe me we tried them all).
 
The valium is really messing up my thought process's now, my typing, spelling, memory, it is slowing me down mentally and physicaly, I can feel it more this year then any other and am trying to ween myself off it as well. The Tardive I recieved as a gift from over-used reglan takes control of almost every muscle in my system without it though and the spasms are endless, like being elector shocked endlessly.
 
darn I chat to much when I should stay succinct and to the point.
 
Anyway, I will, with any luck, be finding another route with my current GI. Going to see him can be very stressful, he has no bedside manner, like a robot, is more busy jotting notes then listening to me and seems to have made up his mind most times before I have even spoken with him, but all other GI's I have seen say he is the best, the most informed on the disease in my area.
 
Hope some of this info helps.
 
Thanks
Jon

lamb61
Veteran Member


Date Joined Jan 2005
Total Posts : 1718
   Posted 7/19/2010 2:36 PM (GMT -7)   
Jon,

I know doctor appts can seem overwhelming. Can you take someone with you as an advocate? Someone who will speak up or at least back you up?

L.
 

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