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03-19-2008, 07:20 AM #1ICN President
- Join Date
- Mar 2000
- Posts
- 3,218
Got GREAT news from the cardiologist
In addition to the two wicked flus that I've had in the last four months, I also have been struggling with some very scary heart arrythmias, tachycardia... etc. etc. that run in my family. I first noticed them in my 20's... when I learned that I couldn't take benadryl without experiencing a very fast heart rate. Then, in my 30's, I learned that I couldn't take elavil because it gave me arrythmias. I then figured out that if I had any gas at all on my stomach, I would throw alot of extra atrial beats and the occasional scary PVC. It's been 20 years of being scared and nervous about my heart... really anxiety producing.
Well, this morning, I found out why. I have something called heart entrapment syndrome. Big word for some basic anatomy. Basically, what it means is that my chest cavity is more boxlike than round... i.e. flatter. Thus, I'm 10mm less deep than the average person. What that means is that my heart is pressed up directly underneath my sternum and because it is under slight pressure due to the lack of space, is known for triggering extra beats, etc. etc.
But what makes this even more interesting is that patients with this often have MVP, GERD and even hiatal hernias. By golly, I have MVP, GERD and the cardiologist thought that he saw a hiatal hernia in the cat scan... thus explaining all of the stomach problems that I've had. I'm so excited about this...
#1 - IT ALL MAKES SENSE NOW. My dad has it, my sister and brother probably have it. I wish that I had known this in my 20's... as it would have taken away 27+ years of worrying about it. Yikes... it really all does make sense now.
#2 - IT'S BENIGN - My heart is in great shape overall just abit sensitive to stimulation. I'm taking Lopressor to keep my heart less reactive to adrenaline.
#3 - DEHYDRATION is to be avoided at all cost. Someone with this syndrome will experience twice the heart effects from dehydration.
#4 - EXERCISE is essential. I've got to keep my heart strength up so that it is strong enough to push against my ribs and make space for itself.
So.. now you know. I've been freaking for the last four months about my heart... having PVC's every day. Really scary stuff because they make my chest and sternum physically vibrate. But, now we understand why. I'm not crazy!! Yahoo!
On to the endoscopy on Friday afternoon. Betcha $5 that it's confirmed that I have a hiatal hernia!! Wish me luck!
JillWould you like to talk with someone about your IC struggles? The ICN now offers personal coaching sessions that include myself, Julie Beyer RD on the diet and Diana Brady CNC on alternative medicines. http://www.icnsales.com/icn-personal-coaching/
Looking for books, magazines & reports on IC? Please visit the ICN Shop at: http://www.icnsales.com: Your ICN subscription & purchases in our shop support these message boards, chats and special events. BECOME AN ICN ANGEL TODAY!
Please remember that the information on the ICN is provided with the understanding that ICN, its founder, staff, volunteers, and participants are not engaged in rendering medical or professional medical services. We cannot and do not give medical advice. Only your personal physician can do this for you.
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03-19-2008, 07:40 AM #2ICN Member
- Join Date
- Apr 2006
- Posts
- 2,190
Jill that is wonderful news that you found out what it is and things you can do to help it. I can't even imagine how scary it must have been for you. Hopefully now you will be able to relax some now you know what is causing it.
Sending many hugs, Trish
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03-19-2008, 08:37 AM #3ICN Staff
- Join Date
- Jan 2002
- Location
- Memphis, TN
- Posts
- 10,854
At least you have answers to what you have been experiencing. That is always good.
Sharon
Shopping??? Did someone mention shopping? I'll get my hat... ;-)
Where I can be found most days.
If not there, then here
Link to the ICN Patient Handbook:
http://www.ic-network.com/handbook/
Link to the IC Diet:
http://www.ic-network.com/diet/
IC Volunteers are not medical authorities nor do we offer medical advice. In all cases, we strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.
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03-19-2008, 08:45 AM #4Support Volunteer
- Join Date
- Nov 2006
- Location
- Louisiana
- Posts
- 8,892
Jill, so glad you got some answers!
I to suffer from PVCs and it scares the heck out of me when my heart feels like it is jumping out of my chest. It literally takes my breath away..
They have done serveal test and have never been able to find what causes this! I know I was having them more in Elavil and noticed that Claritin made my heart go crazy. Thank you for sharing this. I think I will mention this to my Dr..Hugs
Ronda
ONE Second, ONE Bite, ONE Breath, ONE Pill, ONE Minute, ONE Teardrop, ONE Hour, ONE Sip.. ONE DAY! I will Prevail from this disease! IC Hoping for a Cure!
Link to Patient Handbook:
http://www.ic-network.com/handbook/
Diet Reference Sheet:
http://www.ic-network.com/diet/icndi...tsheet0909.pdf
Meds For IC: Lyrica-25mg Glucosamine-500 MSM-500mg, Prosed Ds -When Flaring
Other Meds: Levlite- Continious Birtcontrol, Micardis-40mg for High Blood Pressure
Meds I have Tried:
Topamax,Tofranil, Elmiron, Atarax, Cymbalta, Elavil, Enablex, Detral La, Prydium.
Lexapro< Bad reaction to this med!
Intstills, could not continue them due to some kind of reaction after 3rd instill. Tasted the lidocaine in my mouth, tongue and lips went numb then went into what seemed like a panic attack. Shaking, racing heart, tingling face/head, blood pressure shot up..
Dx With IC in Nov 2006 with Hydro/Cysto
Hydro/Cysto Caused Bladder to Rupture.
Other Dxs-Vulvodynia,Fibro, Endo, IBS, HPV, Migraines, Spastic Colon, Mild Dysplasia.
ICN Volunteers are not medical authorities nor do we offer medical advice. In all cases, we strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.
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03-19-2008, 08:50 AM #5No longer active
- Join Date
- Jan 2003
- Posts
- 5,623
Glad you got answers to alot of health concerns
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03-19-2008, 08:56 AM #6Support Volunteers
- Join Date
- Mar 2003
- Location
- Northern WI
- Posts
- 3,631
That is great that they know what is truly going on! I am so glad it isn't something more serious!!!
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03-19-2008, 11:13 AM #7Forum Manager
- Join Date
- Mar 2000
- Location
- Oregon
- Posts
- 32,561
YIPPEE! Terry has a hiatal hernia and he does very well. I'm so glad what you have is nothing really horrible!
Warm hugs,
DonnaHave you checked the ICN Shop?
http://www.icnsales.com for US & Canada
http://www.icnshop.com for all others
Patient Help: http://www.ic-network.com/patientlinks.html
Diet list: http://www.ic-network.com/diet/2009icdietlist.pdf
You'll find my story at: http://www.ic-network.com/patientstories/donna.html
I am not a medical authority nor do I offer medical advice. In all cases, I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.
Anyone who says something is foolproof hasn't met a determined fool
.....My Meggie.....
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03-19-2008, 03:02 PM #8ICN Member
- Join Date
- Sep 2006
- Location
- USA
- Posts
- 1,897
I know you have to be so relieved and I am so glad you found out what was going on. It is scary not knowing.
Miss Bessie
Galatians 6:2 - Carry each other's burdens, and in this way you will fulfill the law of Christ.
Hebrews 13:2 - Do not forget to entertain strangers, for by doing so some people have entertained angels without knowing it.
Proverbs 4:23 - Above all else, guard your heart, for it is the wellspring of life
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03-19-2008, 03:31 PM #9ICN Member
- Join Date
- Feb 2007
- Location
- Wisconsin
- Posts
- 1,707
I am glad that you finally found an answer!! It can be so frustrating dealing with symptoms for so long and never getting a diagnosis.
I hope your test goes great on Friday!!Current diagnosis
Severe IC, Severe Endometriosis(keeps growing back all over despite surgeries and treatment), Chronic ovarian cysts, Chronic Pelvic Pain Syndrome,Fibromyalgia,Inguinal hernia, bursititis of the hip, Migraines, IBS, Celiac disease, CROHN'S Disease, Chronic Constipation, Chronic anal fissures, Vulvodynia, Pelvic Floor Dysfunction, Pirisformis muscle spasms,vulvar vestibulitis, chronic insomnia, Burning Mouth Syndrome, Brain TUMOR, Chronic Lyme Disease,Temporomandibular Joint Disorder,Degenerative disc disease,Arthritis.
Allergies: Elmiron, Levaquin, Sulfa-Anaphylactic shock,Morphine, Doxyclycline,Cipro
Treatments I have tried:Bladder instillations, Oral meds-Elmiron, Elavil (amitryptyline), Hydroxyzine (Vistaril & Atarax), Ditropan, Levsin, Urispas, Urised, Pyridium, Cystoprotek, Desert HarvestAloe,antibiotics,Ultram,Neurontin,Valium,Tramadol,Lunesta,Ketor olac,Cipro,Meloxicam,Dilaudid,Morphine,Vicoden,Darvocet,oxycontin,Lyri ca,Cymbalta,Nortriptyline,Enblex,Baclofen,Clonidine,oxybutynin,Detrol, Nitroglycerine ,Vesicare,Sanctura(there are more but this is enough)
Physcial Therapy, Cystoscopy with Hydrodistentions, Numerous Nerve Blocks, Neuromodulation-including Sacral neuromodulation(Interstim) and post-tibial nerve stimulation (Urgent PC-12week), Botox, bladder instills, physical therapy, natural(herbs)Current meds: Long list..just email if you are interested
Interstim implants--8 plus surgeries for them.
I am selling IC awareness bracelets, keychains, pens and pins..if interested please email me! ThanksFeel free to email me at mlzippy7@yahoo.com.
One day at a time
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03-20-2008, 02:40 AM #10ICN Member
- Join Date
- Jan 2003
- Location
- Hutto, Texas (30 miles or so outside of Austin)
- Posts
- 4,149
Glad you found out what is going on. i too found out that I can not take the pill form of benadryl - as I too get rapid heart beats, etc) but I can take the liquid kind)- thankgoodness as the doctors give it to me when I have my procdures done. ( I have to have antibotics due to my heart valve).
Anyway, found out about the benadryl when I was sick after my youngest was born and I took it and i was home all by myself and I started having rapid heart beats and problems breathing - had to call EMS - pretty scary.
Anyway, good luck tomorrow.
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03-20-2008, 02:46 AM #11ICN Member
- Join Date
- Nov 2007
- Location
- Pennsylvania
- Posts
- 2,023
Thats good you found out what it is, its always a relief to know and not have to worry and try to guess. Good luck on Friday.
Lisa
Current meds:Elavil, Lortab as needed, Vivelle dot hormone patch 0.1mg, estrace cream, lidocaine ointment, pepcid
Diagnosis: IC in 1999 , IBS, Pelvic floor dysfunction, vulvodynia, vestibulitis, chronic low back pain, scoliosis, hunners ulcers on bladder, hysterectomy 2/08, fibro 3/08, sciataca
Me and my girls, my son, me and my wonderful fiance, and our puppy Miley (who loves to cuddle).
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03-21-2008, 05:20 PM #12ICN President
- Join Date
- Mar 2000
- Posts
- 3,218
Yes, it was confirmed. I've got a small but painful hiatal hernia!!!! I'll take that over cancer any day.
Jill
Would you like to talk with someone about your IC struggles? The ICN now offers personal coaching sessions that include myself, Julie Beyer RD on the diet and Diana Brady CNC on alternative medicines. http://www.icnsales.com/icn-personal-coaching/
Looking for books, magazines & reports on IC? Please visit the ICN Shop at: http://www.icnsales.com: Your ICN subscription & purchases in our shop support these message boards, chats and special events. BECOME AN ICN ANGEL TODAY!
Please remember that the information on the ICN is provided with the understanding that ICN, its founder, staff, volunteers, and participants are not engaged in rendering medical or professional medical services. We cannot and do not give medical advice. Only your personal physician can do this for you.
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03-21-2008, 05:23 PM #13ICN Member
- Join Date
- Feb 2007
- Location
- Wisconsin
- Posts
- 1,707
Jill,
I am sorry that you have the hernia but I am glad they confirmed it for you.
Will they be doing surgery to fix it or will they wait and see how it goes?
I wish you the best!Current diagnosis
Severe IC, Severe Endometriosis(keeps growing back all over despite surgeries and treatment), Chronic ovarian cysts, Chronic Pelvic Pain Syndrome,Fibromyalgia,Inguinal hernia, bursititis of the hip, Migraines, IBS, Celiac disease, CROHN'S Disease, Chronic Constipation, Chronic anal fissures, Vulvodynia, Pelvic Floor Dysfunction, Pirisformis muscle spasms,vulvar vestibulitis, chronic insomnia, Burning Mouth Syndrome, Brain TUMOR, Chronic Lyme Disease,Temporomandibular Joint Disorder,Degenerative disc disease,Arthritis.
Allergies: Elmiron, Levaquin, Sulfa-Anaphylactic shock,Morphine, Doxyclycline,Cipro
Treatments I have tried:Bladder instillations, Oral meds-Elmiron, Elavil (amitryptyline), Hydroxyzine (Vistaril & Atarax), Ditropan, Levsin, Urispas, Urised, Pyridium, Cystoprotek, Desert HarvestAloe,antibiotics,Ultram,Neurontin,Valium,Tramadol,Lunesta,Ketor olac,Cipro,Meloxicam,Dilaudid,Morphine,Vicoden,Darvocet,oxycontin,Lyri ca,Cymbalta,Nortriptyline,Enblex,Baclofen,Clonidine,oxybutynin,Detrol, Nitroglycerine ,Vesicare,Sanctura(there are more but this is enough)
Physcial Therapy, Cystoscopy with Hydrodistentions, Numerous Nerve Blocks, Neuromodulation-including Sacral neuromodulation(Interstim) and post-tibial nerve stimulation (Urgent PC-12week), Botox, bladder instills, physical therapy, natural(herbs)Current meds: Long list..just email if you are interested
Interstim implants--8 plus surgeries for them.
I am selling IC awareness bracelets, keychains, pens and pins..if interested please email me! ThanksFeel free to email me at mlzippy7@yahoo.com.
One day at a time
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03-24-2008, 03:19 AM #14ICN Member
- Join Date
- Oct 2006
- Posts
- 60
glad to hear the news..
glad to hear the news...you certainly deserve a break....
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03-24-2008, 03:53 AM #15Support Leader
- Join Date
- Jun 2002
- Location
- Iowa
- Posts
- 3,768
Jill,
I am so glad to hear you got some good news. At least you know what is going on now.
Jolene
"Life is what happens when you are making other plans" John Lennon
IC diet cheat sheet....http://www.ic-network.com/diet/dietcheatsheet.html
Information for Patients can be found here.
http://www.ic-network.com/patientlinks.html
Jen's tips for great IC sex..http://www.ic-network.com/forum/showthread.php?t=22522&highlight=jens+tips[/url]
Newbie Angel...I will be happy to answer any questions or just listen. Email me at joleneb2@yahoo.com
"IC Angel Volunteers are not medical authorities nor do we offer medical advice. In all cases, we strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you."
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