never been this afraid.. i feel like im losing my mind...

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debilitated
Regular Member


Date Joined Jan 2010
Total Posts : 448
   Posted 5/11/2010 9:21 AM (GMT -7)   
Ever Since i got home from the hospital I feel helpless. Im pretty much in bed all day.. Im afraid to even walk to the bathroom. Those SVT's scared the hell out of me. My resting heart rate is typically 75-100 but the minute i sit on the toilet or get up i feel like im out of breathe and my H.R is 130-155. Than i fear of episodes.

im pretty much in bed all day using my urinal... etc..

Im on Tpn trying to recover.. will i ever be the same again? I really need all of your help, support.

EKG. ECHO shows strong heart but i feel home and bed bound.

the psychologist has me on valium but i dunno.. i should take it every 12 hrs but i dont.. i take half only.


Do i continue to rest and build the weight? tell myself it will be ok>

possible reasons for heartrate during up periods.
low albumin 2.4
15mg prednisone daily.
100 pounds 5 ''11 but getting better from tpn.

tell my im over reacting and i just need to get healthy and be a normal weight.

what can i do? my heart is strong but rapid heart rates are scary when u get light headed and tired easy.
Male, 22. Diagnosed with Crohn's officially since 2001.. Osteoporosis, Generalized Anxiety Disorder, Chronic Anemia.

Medications Used: Remicade, Humira, Cimzia, 6-mp, Pentasa, Flagyl, Prednisone, Zifaxan, Entocort,
TPN (Total Parenteral Nutrition), The whole nine.

Current: Methotrexate Injection, Entocort EC, Vitamin D, Fentanyl 25mcg / 72hrs - Zofran - Folic Acid
Currently On SSDI


cleo35
Regular Member


Date Joined Feb 2007
Total Posts : 430
   Posted 5/11/2010 9:48 AM (GMT -7)   
debilitated: you're dealing with a lot there buddy so take a deep breath. Your heart rate could be due to any number of things - one of which is included your profile (chronic anemia). If the valium isn't doing the trick or you're having side affects from it there are other anti-anxiety drugs such as Lorazepam you could try. I know I harp on this a lot but if there's any way you can get to a teaching hospital - if you're not being treated at one already - I would strongly suggest you get to one as soon as you can.

vixen
Veteran Member


Date Joined Jan 2010
Total Posts : 794
   Posted 5/11/2010 11:13 AM (GMT -7)   
You need to rest and dare I say it take all of your valium-you have been prescribed the amount for a reason so it pretty silly not to take it.
By not taking it you are putting your body under more stresses and strains which will not do you any good what so ever!
You know you need to rest and build your weight up(and take the tablets!) and it will be ok BUT you need to give yourself a fighting chance.
It takes a while for things to go wrong in the body so it is going to take a while to get fit again
You hang in there ((((hugs)))))

MToronto2
Regular Member


Date Joined Apr 2010
Total Posts : 232
   Posted 5/11/2010 11:52 AM (GMT -7)   
Breaaaaaaaaaaaaaath, deep and full now do it 4 more times.

Your panicking, this is a reasonable response to an unreasonable situation.

Keep the faith that this will pass, it will.

In the mean time do your best and talk to your doc and shrink. I am amazed they still Rx valium, highly addictive (and not worth the withdrawal). There are better more appropriate drugs to help you deal with your panic and anxiety, please ask about them.

Seems the toilet is a trigger for you. Take a book, ipod anything in there with you and focus on that and your needs to be there. You'll have to desensitize yourself to it, cuz baby the toilet is our friend!

We're here for you, so post and read our responses, heck if you have a lap top and wireless, take that into that can with you.

Folks, we need some poopie/funny stuff to amuse our friend with. As soon as I can think of one I will post...

Remember to breath, deep long and sloooooow. It helps.

You will get better, you really will.

(((((Vixen)))))))
CD 24 years. Multiple surgeries in past 10 yrs. 4 year Illeostomy. Mesh rejection. Too close to death, twice. Large inscisional hernia. Perpetually underweight. Short bowel syndrom. Have used a variety of complementary medical therapies. Highly recommend Bowen Therapy as the best body work. Take me vites. Started Low Dose Naltrexone March 27, 2010. Got married for the only time 2008. Survive because of the love of good friends, and because I can. Happy to be alive. IBD needs more awareness and more voices willing to speak up. BE well.


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 5/11/2010 12:13 PM (GMT -7)   
I respectfully disagree with Mt2 as although Valium is addicting, if you take it as prescribed by your doctor you will be fine. I take Xanax for my anxiety and it works well for me and I am not dependent on it.

I agree that the anemia and the GAD are acting up. I think you need to rest, most importantly, but also follow the doctors orders and take the Valium as directed. I think the toilet is triggering your anxiety, so take the Valium and give yourself some relief.

Good luck
Gail*Nanners*
Gail*Nanners* Co-Moderator for Crohns Disease 
Crohn's Disease for over 34 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium, Vit D, and Xanax prn. Resections in 2002 & 2005. Also diagnosed w/ Fibromyalgia, Osteoarthritis, & Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

patsybell
New Member


Date Joined May 2010
Total Posts : 13
   Posted 5/11/2010 1:46 PM (GMT -7)   
Hello debilitated -

I agree with what others have said. I don't think you're over-reacting. You're dealing with a lot. You do sound a bit down though. One thought I can offer is to see a psychiatrist to get a second professional opinion on whether Valium is the best way to go for your situation. Psychiatrists are better trained than psychologists in pharmacology, and it may be reassuring to talk to someone well versed in these types of drugs about your concerns with Valium and your options. I take Lorazepam for anxiety, have been doing so for a while under the care of my psychiatrist, and have been doing pretty well. No addictions or any other hang ups.

One other thing that you may want to look into is side effects of prednisone. My husband recently had to take it to reduce inflamation with a nasty knee tendon issue. One of the side effects is anxiety, and boy was he a reck. He had heart palpitations and was almost panicky when faced with even the most banal aspect of her medical problem. Once he came off the prednisone, anxiety is again under control.

Hang in there.

debilitated
Regular Member


Date Joined Jan 2010
Total Posts : 448
   Posted 5/11/2010 2:08 PM (GMT -7)   
Thanks all. My hemoglobin is around 11 so im not that anemic. I can't believe the responses. You ALL really helped alot. Thanks.

I have Xanax for Bad episodes and Valium to relax at night if things get depressing.

Im glad i know that im not nuts.. i do figure a lot is because of the bathroom yes. but just by getting up and trying to exercise speeds up the heart rapidly. but i also tell myself "i got to get up" so that triggers anxiety..

ill start taking my stuff as directed and see if overall i feel less stressed. maybe my body will learn to not be so anxious with help from the meds.
Male, 22. Diagnosed with Crohn's officially since 2001.. Osteoporosis, Generalized Anxiety Disorder, Chronic Anemia.

Medications Used: Remicade, Humira, Cimzia, 6-mp, Pentasa, Flagyl, Prednisone, Zifaxan, Entocort,
TPN (Total Parenteral Nutrition), The whole nine.

Current: Methotrexate Injection, Entocort EC, Vitamin D, Fentanyl 25mcg / 72hrs - Zofran - Folic Acid
Currently On SSDI


ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 5/11/2010 3:25 PM (GMT -7)   
My resting heart rate is always above 120 when I'm unwell: it's one of the ways I know my Crohn's is playing / is about to play up. When my health improves, my resting rate drops to 60-80. The same may be true of you: in other words, not an indication that things are direly wrong with your heart, but more an indication that your Crohn's is active.

Remember, you're in pain, and this is automatically going to push your body into a stressed state, and elevate your heart-rate.

If your body can handle it, you might benefit from having some therapeutic / relaxation massage to pull you out of this stressed state and put you into a more relaxed state, where healing is more possible.

I do have a few suggestions for you, Debilitated:

* I wonder if it might help you to ask your doctor _not_ to supply you with all your blood test results, and only let you know when things are in the normal or abnormal range. I don't think it is helping you to try to double-guess what your pathology results are indicating.
* Perhaps ask for a referral to a physiotherapist so that you can have an exercise programme arranged for you that you feel _safe_ with. This might be as simple as bed-based or chair-based exercises... but it is important that you do something, as serious complications can develop if you are immobile.
* Think about getting some sort of safety / panic button. These can be worn like a wristwatch, or around your neck, and you can press it to call for help if you do develop some sort of medical problem and need emergency help. This might help you deal with some of the anxiety you feel in moving around your house and going to the bathroom.
* Maybe write down exactly what your fears are and post them here, and also so them to your doctor. That way, together, we might be able to work out some strategies to help you feel more confident.

Hang in there.

Ivy.
Co-Moderator Crohn's Forum.

Medications for Crohn's ~~ Diet and Nutritional Therapy for Crohn's ~~ Dealing with Abscesses and Fistulae ~~


PV
Veteran Member


Date Joined May 2006
Total Posts : 1177
   Posted 5/11/2010 6:39 PM (GMT -7)   
When my husband was sick and in the hospital, his resting heart rate was around 100. And when he got up to go to the bathroom, it went up to 140-150. The docs said that this is a combination of just being sick, and also of your body getting used to laying down. I agree with ivy that when your body is in pain, your heart rate goes up - I've noticed this with my husband. The whole time he was sick and in the hospital, one of his common complaints was that he felt his heart was thudding in his chest; if he was dehydrated on top of being sick, his resting heart rate was about 150.

My husband was very fearful of the fast heart rate and the fact that he felt light headed and dizzy and even the slightest effort wore him out, so he was inclined more to just stay in bed and not move around. The docs were ok with this when he was sick; but once they felt he was on the road to recovery, there wasn't one doc out there (and there were 5 docs following his case) who didn't prod him to get up and get moving. Instead of lying down, they said, sit up, sit in a chair, walk around the room . . . again, this is once he started actually doing better with the crohn's symptoms. They said being sedentary (esp lying down flat) is not going to help get your resting heart rate back into spec. It took him a good solid 6 months for his resting heart rate to drop back down to around 80.

But all that being said, it sounds like you are not on the road to recovery yet; so please don't over do it. I agree with the posters who suggested an alert bracelet or something like that, so that you can start slowly trying to sit up more and move around a little more, as you feel better. Also, being dehydrated can increase your heart rate, so make sure you are taking in plenty of fluids.

Hopefully the TPN will give your bowels a break, and will calm down the crohn's symptoms, allowing you to recover and slowly get back on your feet. I hope you find some relief soon. (((Hugs))). I really do think the problem is this crohn's flare that won't die down, not your heart. My husband had very similar symptoms - the docs did an EKG and ECHO on him as well and found everything normal. So, don't panic yet - hopefully everything with your heart is fine, and it's just crohn's taking a toll on you. Controlling the crohn's should help get rid of all of this. I hope you get there real soon.

PV
Husband with Crohn's
Diagnosed March 2003 Ulcerative Proctitis
Diagnosed March 2008 Crohn's & C-diff, hospitalized 45 days
Crohn's in Remission since June 2008
C-diff recurrence Sep 2009
Reactive Arthritis Nov 2009
Currently c-diff free
Osteopenia of spine (Mar 2010)
Canasa (1gm), Lialda (4.8 gms), Remicade (8 weeks)
Currently In Remission


MMMNAVY
Veteran Member


Date Joined Jul 2006
Total Posts : 6927
   Posted 5/11/2010 6:55 PM (GMT -7)   
I can have a resting heart rate from 40 bpm (sleeping) to a active heart rate of over 200 when I am sick and trying to walk (as someone who has had a polar heart rate monitor to gauge my workouts for years this is a hard sprint over a fair distance). This is part of being sick and the recovery process, for people who have had some heart issues. I do a 24 hour heart rate monitor every three months. If getting an wristwatch alarm will help you then do it. You can do this and please do talk with your therapist & psych med doctor about this, in addition to your regular doc.

How do you build muscle?
How do get better?
Yes, you need rest, but you also need activity. Even if it is movement to bed to the recliner (I actually think the recliner is best because you can control you leveling much better, and I do not want you getting sores from being in bed.)
Keep fighting.
Forum Co-moderator - Crohn's Disease/Thyroid Disorders:_All comments have the caveat contact your local health care provider.

I will find a way or make one. –Phillip Sidney 1554-1586

All that I am and all that I shall ever be, I owe to my Angel Mother.

The Bucket List- Have you found joy in your life?  Has your life brought joy to others?

Make sure your suffering has meaning…

Post Edited (MMMNAVY) : 5/11/2010 8:24:20 PM (GMT-6)


debilitated
Regular Member


Date Joined Jan 2010
Total Posts : 448
   Posted 5/11/2010 7:24 PM (GMT -7)   
Thank you all. It means a lot to hear this. Im laying down and sitting up etc.. I am on a moniter for 3 weeks that is currently being watched over all day. I also have a wrist watch and see resting heart rates at 75-100.. so not bad.. its goes up with Urgency of diarrhea and activitiy.. but A LOT. maybe anxiety? also weight and recovery. I feel a little better now.. still a bit worried. but I gotta be positive. but easier said than done,
Male, 22. Diagnosed with Crohn's officially since 2001.. Osteoporosis, Generalized Anxiety Disorder, Chronic Anemia.

Medications Used: Remicade, Humira, Cimzia, 6-mp, Pentasa, Flagyl, Prednisone, Zifaxan, Entocort,
TPN (Total Parenteral Nutrition), The whole nine.

Current: Methotrexate Injection, Entocort EC, Vitamin D, Fentanyl 25mcg / 72hrs - Zofran - Folic Acid
Currently On SSDI


Becoming undone
Veteran Member


Date Joined Jul 2007
Total Posts : 927
   Posted 5/11/2010 7:45 PM (GMT -7)   
We're here for you...talk, cry, whatever, we will listen...

Just another note, to chime in with what has been said...When my dad had heart surgery, I could tell when his pain levels were going up because his heart rate would increase...my dad didn't like the medications, because he thought he was being weak, would get addicted*********(insert any media horror story about pain meds here)...he was in ICU for goodness sakes!!!BTW, I did, (as still occasionally do) have the same doubts and issues...I also know that my heart rate goes through the roof too when in pain...

Sometimes, depends on the person, getting out the, writing out, yes even, if just for a bit, dwelling for a bit on this may help...also reading funny stuff about poohing...I know when I'm in a bad way, I look for stuff written by our resident potty comedians...
"The earth laughs in flowers"


Aimee =)
Veteran Member


Date Joined Jun 2004
Total Posts : 1020
   Posted 5/11/2010 8:05 PM (GMT -7)   
I admit I am not familiar with anxiety disorders... but I can tell you that Prednisone completely changed me while I was on it. I was extremely paranoid and anxious the entire time I was on it. It was awful; it just about completely went away when I finally tapered off it. I do wonder if that is playing a big role in your mental state right now. That drug can do some powerful things.

If your doctor feels comfortable with the dosage on the Valium, you should take it. I've found that my physical health improves when my mental health does. It may do wonders for your day to day activity and well being.

MMMNAVY
Veteran Member


Date Joined Jul 2006
Total Posts : 6927
   Posted 5/12/2010 5:32 AM (GMT -7)   
I been thinking about this, and I wonder if your dose is so small that the valium is not effective, because you are not taking an effective dose when you cut it in half and you are shooting it thru your body too fast from the crohns? What do you think?
Do you feel like another anti-anxiety med might work better?
Forum Co-moderator - Crohn's Disease/Thyroid Disorders:_All comments have the caveat contact your local health care provider.

I will find a way or make one. –Phillip Sidney 1554-1586

All that I am and all that I shall ever be, I owe to my Angel Mother.

The Bucket List- Have you found joy in your life?  Has your life brought joy to others?

Make sure your suffering has meaning…


MToronto2
Regular Member


Date Joined Apr 2010
Total Posts : 232
   Posted 5/12/2010 6:34 AM (GMT -7)   
Good thought Navvy...
CD 24 years. Multiple surgeries in past 10 yrs. 4 year Illeostomy. Mesh rejection. Too close to death, twice. Large inscisional hernia. Perpetually underweight. Short bowel syndrom. Have used a variety of complementary medical therapies. Highly recommend Bowen Therapy as the best body work. Take me vites. Started Low Dose Naltrexone March 27, 2010. Got married for the only time 2008. Survive because of the love of good friends, and because I can. Happy to be alive. IBD needs more awareness and more voices willing to speak up. BE well.


cleo35
Regular Member


Date Joined Feb 2007
Total Posts : 430
   Posted 5/12/2010 1:13 PM (GMT -7)   
At every appointment I'm asked the same question before BP or heart rate is taken, "are you in pain right now?"

debilitated
Regular Member


Date Joined Jan 2010
Total Posts : 448
   Posted 5/12/2010 2:51 PM (GMT -7)   
I havent really been taking pain meds really... Im not really in pain..
i think the heart rate is more from malnourishment, anxiety and thinking about it too much..

will it get better with anxiety meds and TPN over time? This is what scares me.. not the pain.. im not in much pain. i wanna get up and exercise and do things again without SVT fears. Since i consider the SVT's to be scary.

but im home now and its been 2 weeks.
Male, 22. Diagnosed with Crohn's officially since 2001.. Osteoporosis, Generalized Anxiety Disorder, Chronic Anemia.

Medications Used: Remicade, Humira, Cimzia, 6-mp, Pentasa, Flagyl, Prednisone, Zifaxan, Entocort,
TPN (Total Parenteral Nutrition), The whole nine.

Current: Methotrexate Injection, Entocort EC, Vitamin D, Fentanyl 25mcg / 72hrs - Zofran - Folic Acid
Currently On SSDI


MToronto2
Regular Member


Date Joined Apr 2010
Total Posts : 232
   Posted 5/12/2010 3:23 PM (GMT -7)   
Yes, over time things will improve. Keep in my Entocort is a steriod, and it's messing with your mind/mood to some degree, less than pred, but still some. As you become more nourished your body will respond, and you may not get the physical effects of panic as much.

Your not on TPN 24 hours a day, so go for a walk, short is fine. Just get outside. That might help.

Drugs and TPN isn't going to do everything, you have to be active in small ways to calm yourself and make yourself feel bettertoo, so do the things you like! I suggest read some books on managing anxiety of the self help variety and some good fiction so you can get away in your head.
CD 24 years. Multiple surgeries in past 10 yrs. 4 year Illeostomy. Mesh rejection. Too close to death, twice. Large inscisional hernia. Perpetually underweight. Short bowel syndrom. Have used a variety of complementary medical therapies. Highly recommend Bowen Therapy as the best body work. Take me vites. Started Low Dose Naltrexone March 27, 2010. Got married for the only time 2008. Survive because of the love of good friends, and because I can. Happy to be alive. IBD needs more awareness and more voices willing to speak up. BE well.


songstress
Regular Member


Date Joined Jul 2005
Total Posts : 393
   Posted 5/14/2010 10:02 PM (GMT -7)   
I've been on TPN before , I'm underweight too and I have svt's like crazy...it is rather scary. Have they tried giving you any beta blockers? I was waking up in the mornings and my heart was beating around 180 and resting at 135 or so, so I had to go on some. I have been so much better since taking them. Ativan and the like help but don't always stop that annoying palpitating. I can't sleep during those and you do lose your breath.

Good luck, I wish the best for you. TPN is hell and I cried alot but I made it through!
Psalms 9:18
But the needy will not always be forgotten, nor the hope of the afflicted ever perish.

Finally awarded disability after 4 long years! Thank God for attorneys!
Dx'd with Crohn's colitis May 05, spread to ileum as of 08'-- Currently on Humira every 2wks, Pentasa, Entocort, Phenergan,Zantac, Ambien

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