Can CIDP effect the heart muscle or cause heart failure?

    • Anonymous
      August 19, 2008 at 12:23 am

      I have one last question about this CIDP stuff? I think I pretty much understand the disease process and how it’s treated. I wish I could take this stuff away from us all and we all get well again.
      Can CIDP cause your heart to have a strong type of palpating. Saturday while me and my husband were out we grabbed a bite to eat. I got very nausea and felt like I was going to get sick and could not eat my breakfast. I was sitting there and kept placing my arm against my chest. No massive pain but kept getting this weird Blub blub blub feel in my chest. And my head would get dizzy. It eased up a tiny bit and then tonight it’s doing it again.
      It’s been this off and on ever since I had this last attack on my nervous system. But this weekend was far more worse than before. I’m seeing my doctor tomorrow and plan on telling him. Maybe and EKG should be done. But will that show nerve damage to the heart. Or would I need another kind of test?

    • Anonymous
      August 19, 2008 at 12:00 pm

      CIDP/GBS/many neuropathies[autonomic] can affect the heart. It is rare tho, and doesn’t happen often. It could and likely is more a case of other concurrent medical issues or your medications. Web up ALL your meds under “[I]medication[I][/I][/I][/I], prescribing information” and look very closely at the side effects. Be very careful how you bring up this issue to your docs? Or they may put you on the tranquilizer route and not look any further. Ask your docs about the meds and possible connections to the CIDP, then ask what next? For me it was a peculiar vision issue that got my cardio/vascular systems checked out very, very thoroughly -all tests were negative. Tests included an EEG and EKG, Doppler sonograms of ankles [which were swollen w/edema and possibly a vascular issue], cardiac endoscope [just fine] and Holter monitor [just fine] and a dozen other tests I can’t recall offhand. This specialty neuro-opthamologist ultimately decided they might have been minor TIA’s and, since they’d abated, there was little to worry about….unless they acted up again. They haven’t yet thank goodness.
      The hardest thing about all the CIDP aspects is the fear that new and different ‘things’ are real danger signs and they can truly be. Best to think clearly, calm yourself and work your way through it all. Ask youself: Did I get overtired today? Eat something I don’t normally do? Not do enough that I’ve normally done before? Etc. and sort of piece together any ‘different’ things that might precede this all. Don’t forget that once you get this stuff, you tend to move around and do less….then if you do more, it’ll hit you in one way or another. Do not ever expect a neuro or any other doc to hear you outline your problems and diagnose spot on from the start. Our bodies are complex organisms and just don’t cooperate that way. Nor do the docs. BUT a good doc will do more tests and check things out. A lazy doc won’t.
      I admit that I go get those ‘heart poundings’ more often than I would like, but I can attribute it directly to one specific med I’m taking for another issue. I’m going to see that specialist very soon and discuss options about staying on it, versus not staying on it [for cancer]. You really have to be a detective of sorts about what is best for your own care and what you can and cannot do to help yourself deal with it all.
      I hope this helps ease your fears a bit – if you persue it, and you should within reason, just prepare yourself for tests, tests and even more tests! Usually without any clear cut answers. It is the nature of our issues.

    • Anonymous
      August 19, 2008 at 2:00 pm

      Thank-you for the response! Everything seems to sound pretty logical about those meds. Will check that out and did mention it to the doctor today. He ordered a stress test on me. The EKG sounded normal but decided to do a stress test and see what would come up. Thank-you for all the advice and taking time with me. Really appreciated! Thank-you!!!!

    • Anonymous
      August 19, 2008 at 2:02 pm

      Good morning, Linda,
      About three years ago, after it was found that the CIDP had hit my autonomic system, (dysautonomia), and was knocking off the nerves controlling my different organs, I was actually in the hospital for 3 weeks as they tried to fix things that were wrong. One of the things was that I had very shallow breathing and had to be helped with a bi-pap, (to this day occasionally I have to still use the bi-pap at home). Thus, the doctors confirmed that it had hit my phrenic nerves, (phrenic nerve dysfunction), and my lung capacity was down to 43%. I also had low blood pressure, yet was having tachycardia, (rapid heart beats), with a pulse rate of 120-140. It was determined the CIDP had hit the nerves controlling the heart, (through various tests), and had to be put on Altenolol 50mg daily (I still take it to this day), to keep the heart rate down. I also get syncope.
      It has also hit various other nerves controlling organs, as I try with chemotherapy, (Cytoxin), to get the CIDP into remission, since normal protocol of IVIG and PE has failed.
      So, to answer yes, it can affect the NERVES controlling the heart.

    • Anonymous
      August 19, 2008 at 2:12 pm

      Thank-you for letting me know this. Maybe that is why my doctor wants a stress test. This stuff is kicking me in the behind. I thought I had Lupus finally battled to suddenly get something scary! Still have Lupus but have been able to handle that with my meds. This stuff though is scary! You don’t know if your going to croak or not croak! I go for stress test on Thursday. Hope they figure me out! Thank-you for your opinion also. Something I can think about telling my doctor about also! Thank-you so much

    • Anonymous
      August 19, 2008 at 5:15 pm

      I asked my family DR last week to order a stress test and I got the call today I go on Aug.29 at 7:45 am fasting and no meds. The heart DR is going to be there.
      I sometimes when doing some work at home outside or inside get the feeling of going to be sick and I get in a cold sweat. Then I have to take my top of and cool myself down. I cut the grass recently and the water coming of my head was like it was raining outside. My hair was soaked dripping. I just stopped myself from getting to the point of feeling like I am going to throw up.
      I notice the signs now so I stop before my heart does it thing. That sometimes mean my grass gets only half done. I cut the rest another day.
      I feel it can’t just be in my head. But it doesn’t happen to often. it’s worse when I am hot. But I feel at the hospital they will have the central air on so I won’t have a chance to get hot.
      I hope if it doesn’t show on the stress test that at least the DR can tell me why I get like that.


    • Anonymous
      August 19, 2008 at 5:51 pm

      I, too, had an episode of tachycardia at a time last year when my symptoms were still progressing and had not yet been brought under control. I was just sitting on the couch watching TV in the evening when I experienced a strange feeling in my chest. My heart rate was over 200 bpm, but was quickly brought down to normal in the ER of the hospital my wife drove me to. I was kept overnight in the ICU for observation and tests and was released the next day with a diagnosis of SVT – supra-ventricular tachycardia – which my doctor explained as a short circuit in the electrical system of my heart that is generally not life-threatening. I was prescribed a beta-blocker, wore an EKG monitor for three weeks, and there has been no recurrence since. Whether this incident had been caused by my CIDP can be neither confirmed nor ruled out, however if you search this site on “tachycardia” you will find that it has been discussed on numerous threads elsewhere on these discussion boards.
      When you next see your doctor, it might be a good idea to ask him whether, if you experience these symptoms again, you should go to the hospital for observation. I hope it turns out to be nothing serious. Good luck.

    • Anonymous
      August 20, 2008 at 1:42 am

      Well Sue you explained me years ago when my lupus was active in a flare trying to cut my grass back then. Same thing would happen. And I did exactly what you did! It was like my body was telling me to stop or pay the price later and I listened like you did.
      Gary! I was seen at the ER tonight and they ran some labs and an EKG again. Nothing showed up that was considered serious. But the doctor did say that he thought the same thing. Tachardia.. mispelled.. but told me to follow up with my regular doctor on Friday. I decided to get checked again. Will be posting in another posting about that one! Thanks for all the advice. When it comes to the heart that’s an organ we can’t play with. It stops and we are gone! I certainly am not ready for that yet! Thank-you all for the help!

    • Anonymous
      August 20, 2008 at 1:46 am

      Interestingly, I have had paroxysmal atrial tachycardia (PAT) since I was a child. I took beta blockers and digoxin for about 10 years, and since being an adult, I have only ever really had issues when hormones are jumping around — e.g. pregnancy or menopause (not quite yet!)

      From time to time, I get short episodes of the Bump, Bump that Linda describes. I put it down to being extra tired, or stressed – and very often medications can do it. I am taking a heavy duty pain med that causes it fairly frequently but only for short periods.

      As far as I know, PAT is fairly benign; unless you are having episodes of several hours where your heart rate is coming on to 180 or so (when it starts fluttering rather than beating). (That is what I used to get as a child). If you have a tachycardia problem there are a number of things they can do now with little intervention. The doc used to say that alot of 60+ people have it, it is not usual in young people.

      Hopefully it is not causing you too much discomfort. Happy to provide any other info I can.


    • Anonymous
      August 20, 2008 at 3:31 am

      Thank-you for your input also about the heart issue. Scary stuff. My regular doctor will be seeing me in a few days and hopefully he will figure it out. I may have to be placed on a monitor a few weeks also! Thank-you for telling me about this. I was beginnging to think I was crazy! Sometimes I wonder! 😀

    • Anonymous
      August 20, 2008 at 7:12 pm

      I started having episodes of SVT about six months after the dx of CIDP. I have probably had a dozen episodes since. I have had two cardiac ablations in 2007 to “zap” the extra electrical pathway inside the heart that allows the SVT to happen. So, two surgeries later I’m still on Toprol and still having episodes of SVT. During the first episode my heart rate was in the 250’s. I was at work walking, talking, and only had a little fluttery feeling in my chest. I was grateful that I was already inside of a hospital.
      Good luck with your test, I hope for the best of results for you.

    • Anonymous
      August 21, 2008 at 6:37 am

      Sounds like many of us in here have this problem for some reason. One of my biggest fears is knowing about my mother and grandmother. My mom’s side of her family has heart disease really bad. I already have her high cholesterol problem. They get blockages and have mild heart aatacks without knowing it and their EKGS show up normal. My grandmother’s first heart attack that showed up on EKG only showed a mild attack. After she got admitted and did the Cath she only had 1 opening left in her heart that could get a stint. All the other openings were severely damaged.
      My mother had a mild heart attack and she showed a normal EKG. They did a stress test on her and had to admit her and do a Cath and found two blockages that were 90 percent blocked. So EKG’s in my family are not always accurate testing for us. One of my cousins which is younger than me too had the same thing happen, both of my uncles and several of my grand mothers sisters did the same thing too. So anything to do with my heart scares me. Especially knowing what I know!

    • Anonymous
      August 21, 2008 at 10:39 am

      I have found this thread to be very interesting. I have had episodes of A- fib and A -flutter since 1990. It took four years for the docs to figure out what it was, because the initial episodes where very short. The interval between episodes was any where between a week to several months. They had done all sorts of slice and dice routines on the heart, but nothing helped. They installed a pacer last May. That did the trick [so far]. 🙂

      I was diagnosed with CIDP in 2005, but I could tell there was something “wrong” back in the 90’s. I have the variant of CIDP that progress very slowly. IVIg has help slow it down a little. Could the heart have been the first manifestation of CIDP? Probably not, but the possibility, however remote, in interesting.

    • Anonymous
      August 21, 2008 at 10:59 am

      I also have heart issues.

      10 years ago slight chest pain, sent for angiopalsty. Main LAD blocked 90% 1 stent inserted to open blocked artery

      March of this year, had a feeling things weren’t right. Doctor ordered a MIBI test. ( inject nuculear dye ) to show blockages. Yes I was blocked again, off for more angioplasty. 2 more stents put in.

      On atenolol to keep heart rate down also on Lipitor 80 mg to keep cholestrol down.

      After IVIG my heart rate goes quite high as does my blood pressure for about two -three days???

      Rhonda from Canada

    • Anonymous
      August 21, 2008 at 12:32 pm

      I went into Artial Fib with rapid Venticular response in late June, New Sudden onset. The only thing the MD’s can figure out is that it is somehow related to the CIDP. I am now on three cardiac meds.

    • Anonymous
      August 21, 2008 at 3:44 pm

      Have had issues for 25 years now. Rapid thready heart rate, heart skips beats and jumps around in the chest!:D Has happened since my bout with GBS. I can exacerbate the condition if I consume too much coffee, salt and of course…stress and hormones play a role. My specialist informs me it is quite common in women…but have no statistics to back that up.

    • Anonymous
      August 21, 2008 at 5:18 pm

      I stopped the caffiene and at first thought it was linked. But still do it! But you are right Jan! The caffiene really exerbates it! I had a total hysterectomy and am not on hormones anymore. Totally no hormones so that helps but then again it don’t. But caffiene really can cause those heart skips and flutters. Everything I drink now is caffiene free. No aspartame either! Will not touch aspartame products. They seem to aggitate it! Some of this may be CIDP related but then it could be family related. Very interesting how so many of us have the heart problems going on. Some mild some not so mild.

    • Anonymous
      August 21, 2008 at 9:31 pm


      Jim’s comment about CIDP and heart stuff being related is VERY interesting. I must admit it crossed my mind when I started reading this thread. Paroxsymal Atrial Tachycardia (PAT) can be caused by a virus. CIDP can be caused by a virus….man, I have had some nasty viruses!!!!

      I had PAT dx when I was nine. I got ill with acute renal fairulre about the same time in my life that Mom was ill (she was in her mid thirties, I was in my mid thirties). That only happened once and resolved – but left me with chronic pain that seems to have “mutated” into CIDP.

      Mom has a bunch of issues with environmental allergies, food sensitivities, etc. But, my husband has always found it interesting that Mom and I got sick about the same time in our lives.

      I was been essentially healthy until I started with this in 1995 when I moved to NZ from Canada (nope I am not a Kiwi!) Even now my pain specialist calls me “young, fit and healthy”! Not sure about the fit part!!!

      Anyway, you have to wonder whether all this is lying in wait for you — whether the virus that caused your PAT when you were young is the same thing that caused the CIDP as you got older!!!??? I don’t know. Our bodies are so complicated. I have never thought of them as inter-related.

      You guys seem to have been having episodes of tachycardia type issues [B]after[/B] GBS/CIDP. My issues were clearly before. I find it interesting that your docs have been saying that there “may” be some relationship between them. Does that mean that the PAT is only a symptom and that my CIDP has been quietly demylinating for years before getting diagnosed???? Seems far-fetched.

      As I said, hmmm, now I am thinking!!


    • Anonymous
      August 22, 2008 at 3:41 am

      Very interesting Deb! About your mother and you getting sick at the same time. My mother and I both do the same thing. And I too have problems with being hypersensitive. Can catch any little bug that is normal for the healthy person for them to get over it fast. But for myself a typical 24 hour bug ends up making me deathly ill and will take 4 or 5 days to get over it. I developed Scarlet Fever and that landed me in the hositipal for 5 days. I’m scared to death of trying out new medications.Don’t know how I am going to react to them.
      Any little trigger of something can make me sick. Going to ask my doctor this week about CIDP and the heart muscle. See what his input would be. And something I have noticed with being hypersensitive is the Global Warming strange weather patterns we are having now today. I also wonder if this is a gene factor with GBS/CIDP. Us being born with a certain genetic pattern.
      When I was a child, I never gained weight. Was always loosing weight. Very skinny. I was in my 30’s before I started gaining weight. After I was treated on medication and a hysterectomy. And I was always getting sick with a virus. The older I got the more my immune system got weaker.
      We all had those childhood diseases too, like the measles, mumps & chicken pox.
      My mom told me that I barely got sick and had no problems until I started school and had to get vaccinated. Then I got very skinny and frail. I missed 3 weeks of school with the chicken pox. That stuff eat me up. The measles too caused me to stay out longer than normal. I can’t remember about the mumps. I know I had them but think I was a bit earlier.
      Ohh! My father was Military and we were in Germany when I was born. When we came back to the US, I was 4 years old. Before coming back to the US, I had to have several vaccines of all kinds just to be able to come back to the US. Right after that my mother said I started loosing weight and got sickly then. I still question the vaccine factor! Wonder what was in those vaccines back then. There was also a drug they used back then for pregnant mothers in labor over in Germany. Found out later that drug was banned. My mother had that drug given to her in labor. Forgot what it was called. Just so many factors but not one to pinpoint this disease. I wonder what our scientist and researchers really know about this disease. What scientific things they have found but just won’t really say anything because they too are unsure or afraid they could be wrong. Very interesting topics here!

    • Anonymous
      August 22, 2008 at 10:16 am

      From my understanding; one auto-immune illness may increase your risk of developing another auto-immune illness. That makes sense.

      With CIDP I don’t understand how ANS (autonomic nervous sys) would present itself before PNS (peripheal nervous sys) symptoms.

      I DO NOT have heart disease nor CHF nor elevated cholestorol. However, my neuro can not say if the SVT is related to the CIDP.

    • Anonymous
      August 22, 2008 at 4:09 pm

      [QUOTE=flower]With CIDP I don’t understand how ANS (autonomic nervous sys) would present itself before PNS (peripheal nervous sys) symptoms.
      The autonomous nervous system is part of the peripheral nervous system and not separate from it. It has its own name because it is only partly under our control.

    • Anonymous
      August 25, 2008 at 12:11 am

      I was watching Mystery Diagnoses tonight when the second story was of a woman who always had problems with dizziness migraine especially in the warm weather always very tired. Later in the story they found her heart would be very fast and blood pressure would be high. End up they found her problem and she and her family moved back to the town she grew up in were it is colder the warm climate affects her heart. She had a pacemaker put in.

      I find that when it is warm is when I feel sick. So after watching the show I went on my exercise bike for about 3 minutes at a good speed and since it is hot in my house right now it is a good time to do the test. Well my heart rate went up and I got that sick feeling and I realized that my heart rate is not going down very much because of the heat. Usually after you stop your work out your heart comes back to normal but I realize that mine doesn’t unless I take a cool bath to lower my heart rate.
      So when I get my stress test done on Friday I will tell the DR that. He is the DR that is treating my Dad and my brother.
      Also if the room is cool I will ask the technician if I can wear my cardigan sweater as it is not heavy or that thick but just enough to keep the heat in. Then they would get a better picture of the fact my heart rate doesn’t return to its normal levels until I can cool my whole body down.
      My Normal pulse Rate is between 82-90 bpm. Then when I am having anxiety issues it becomes 120 bpm. I realize that it was the heat affecting my heart but not realizing because my heart rate is not going down fast enough. I don’t think I would have put 2 and 2 together if I didn’t see the Mystery Diagnoses show Sunday night.


      PS: In 2005 I was seeing a shrink who was trying to help me get rid of my anxiety and control my ADHD as she didn’t believe in Ritalin or Concerta. She gave me Propranolol 10mg I was on it about 6 weeks when she took me of it because I had a bad case of bronchitis which may be due to the Propanolol.

      That is the only time my heart rate came done to 72 bpm. I loved it. I always been tired all my life maybe it is having a fast heart rate that makes me tired? I will bring this up to the Heart DR on Friday and also ask if I can have again 10mg of the Propranolol. In 2005 we had a brutally hot summer which could have contributed to my bronchitis. The Propanolol helps with circulation. I always had cold feet all year round and I was always felt the chill in the air. On my Dad’s side of the family his real Father had problems with his legs which could be circulation problems.

      What is propranolol?

      Propranolol is in a group of drugs called beta-blockers. Beta-blockers affect the heart and circulation.

      Propranolol is used to treat [B]tremors[/B], angina (chest pain), hypertension (high blood pressure), [B]heart rhythm disorders[/B], and other heart or [B]circulatory conditions[/B]. It is also used to treat or prevent heart attack, and to reduce the severity and frequency of migraine headaches.

      Propranolol may also be used for other purposes not listed here.

    • Anonymous
      August 25, 2008 at 8:28 am

      I watch the mystery diagnoses too. That just made me think back about a guy going into the ER all the time and was getting severely ill. But they would test him and find nothing wrong. He had one doctor finally see him and did a sleep study on him and after that study found him to have sleep apnea. When they placed him on a CPap his heart symptoms went away.
      So many things can happen to people. Strange things too! Th heat bothers me if it’s super hot and the extreme cold effects me too. Spring and fall are my better days!

    • Anonymous
      August 29, 2008 at 9:59 am

      I had my stress test done and everything was fine. He notice I have a fast heart rate which I do about 88 resting heart rate. When I was done the test my heart rate must have been about 150 I think that is why he stopped. He saw enough.
      I think sometimes my heart must be real high but when I stop then my heart rate doesn’t go down fast enough. About 40 minutes after my test my heart rate was 112 bpm. He recommend that I get an ultrasound of my heart down the road.
      I told him I heard of him but never met him before. He knows my Dad and brother. My brother works at the hospital and my brother takes my Dad to see this DR for his heart and my brother has heart problems.
      I was on Propanalol in 2005 and that lower my heart rate to 72 bpm. I loved it I felt calmer. He will talk to my DR about medication. I forgot to tell him about the tremors I sometimes get. He wanted to know who do I see for my CIDP and I told him DR Zwicker and next week for the first time Dr Bourque. He knows DR Bourque. I have to drive about 68 miles to see him on Tuesday.

      That is it for now


    • Anonymous
      August 29, 2008 at 6:31 pm

      Kind of sad how so many of us have to travel so far for treatment and seeing the right doctor. I have noticed that with many of us. It’s a shame that we have so many neurologist in our world and yet only a few specialize in GBS/CIDP!
      Glad you were able to get that stress test done. So many have heart problems that an EKG can’t detect. My mother and grandmother both were that way.
      Nice talking to you and meeting you in here!

    • Anonymous
      August 29, 2008 at 6:45 pm

      Hi Linda nice talking to you also. It is nice to know we can share our experiences and realize we are not alone.
      The Neurologist I am seeing next week is listed in the Canadian CIDP/GBS newsletter and I hear he is one of the best in Canada.
      Compared to most people on this forum I am in good shape but when it affects your daily life is some way especially work it is tough. People are so cruel at work sometimes.
      Well hopefully I will know why my other neurologist sent me to him. She never said. It will be 6 months next week since I was told I would be seeing him.
      I will ask him for prednisone next week. I will tell him how the swelling in my body/hands went done some when I was on it last year. I have tendinitis in my hands that is now in my forearms and elbows.