Update on my Heart Problems
 

Hey guys! :D

I thought I'd let you know how I'm going with my heart symptoms. Today I finally saw my GP (my regular doctor, you US RSDers call them PCPs) for the first time since wearing the holter monitor a few weeks ago.

She had a look at all the results and told me that within that 24 hour period, my heart rate went from 50 bpm pretty much straight up to 160 bpm numerous times for no apparent reason, such as in the middle of the night when I was asleep. That’s a fair range when you’re snoozing!

When I had the holter monitor on I’d had to keep track of when I noticed any palpatations etc but my GP looked at all that info and said there was no obvious pattern that linked my activities to what my heart was doing. So it doesn’t make much sense. But the good thing is there’s no arrythmia- even though the speed varies so much, the beats themselves are regular and I’m not missing any.

So the next step is to go on beta blockers. This’ll help even out my heart rate so it doesn’t go from one extreme to the other. I’ll start on 1/2 a tablet for a while and see if that helps.

I’m still waiting to see my pain specialist and we’re hoping he may be able to shed a bit more light on why this is going on and how it may be linked to my RSD or my medications. If he can’t, then my PCP will do more tests or send me on to a specialist who can work me out!

Feeling like I suddenly can’t get a breath in, or feeling my heart thumping so fast it’s going to come out of my chest, is a daily issue at the moment and I hate to admit it, but it does worry me. I’m a tad over it already! I’m still dealing with the itching issue every night and it may be that the two problems are linked. But my doctor said it’s ok for me to keep taking the phenergan (antihistimine) for the itching until my pain specialist can take a look at me.

If all this (the itching and heart rate issues) is my body saying it doesn’t like the oxycontin anymore, I won’t be happy, as that’s the only medication I get any decent pain relief from, but I guess we’ll cross that bridge when we come to it. We’ll just take it one step at a time and hope these beta blockers do their job.

Thanks to everyone for their support and feedback so far. :grouphug: I'll let you know how this progresses.

x Kate

Hi Kate!

Nice to hear from ya, but sorry to hear about all the problems. Seems like this RSD stuff just morphs along as it goes LOL.

I was wondering if it might be affecting that fight or flight response in your system? It could cause your heart rate to go up, and also cause the blood pressure to rise and fall as well. It would affect a host of things all at one time, or just one, or any combination of them.

I am having the same troubles, kinda like having a panic attack but cool as cucumber. Emotionally im stable as a rock, and there is no reason for me to feel like im about to panic, or my body should not feel like it is all excited for no reason.

I sure hope they can find something to at least calm it down :hug:

Yeah, I'm thinking it might be something along the lines of what you said. Hopefully my RSD specialist can shed more light onto this, I'm hoping I don't have to wait too long to see him. That darn man is so good at his job everyone wants his time!

I hope yours settles down too, Allen. It's not nice having these heart problems thrown into the mix. Yesterday we saw the cardiologist for my daughters' holes in her heart, today it was my turn! Thankfully she's doing ok and won't need more tests done for at least two years.

take care mate
x Kate

It is sure is scary I know that, and when you throw in the part where it feels like you arent breathing right it even feels like it might be so serious we dont want to go there if you know what I mean lol.

They gave me some Ativan, and it helped a lot. That was few years ago, and a few doctors ago. I now have to convince this doctor that is what I need now. It never ceases to amaze me that every time I see a new doctor they think they will cure me. :rolleyes:

Wow!! I am soo glad she is doing ok!! You both are in my prayers :hug:

Hi Allen,
My Dr. has me on Lorazepam-basically same as ativan. He said it's a huge part in keeping the sympathetic nervous system calm, which in turn keeps our pain levels down. Because RSD brings on anxiety, panic attacks, taking an anti-anxiety if very very important in the general care of RSD. Of all the Drs. I've seen, he understands RSD the best. Been seeing him 5 years out of the last 14 yrs.
Always enjoy your posts, Take care,loretta

Hello,

A side affect of RSD is an irregular heart beat. The first time it happened to me I went to the ER. My husband is a paramedic my heart rate was 300 and we were sure I was having a heart attack. I see my cardiologit every 6 months and my heart is fine. He told me that a very small percentage of open heart patients develope RSD. I have been taking Atenenol for the last 4 years it keeps my heart rate in check. I also take Ativan for anxiety.
Take care
Sherrie

old times..
 

hi folks,
I too take atavan, both sublingual and the longer term lorazapam depending on the need at the time, (sublingual acts quicker) I have a lot of daily heart irregularitys and feel the rsd has total controll at times. One doctor told me that the heart as an organ actualy has the most amount of sympathetic nerves surrounding it.

Curious about something though being vascular, those with heart problems do you also get or did you get migranes? it is important.
Sandra

kate
sorry to hear about this issue i also suffer from this same issue
i have ventricular tachycardia induced by rsd. my normal resting on meds is anywhere from 120-210 bpm. i have to have reg echos every 6mths to check the heart muscle so it doesnt get worn out .. also my cardiologist believes that mine is alot worse due to my rsd being internal. as my heart was one of the first organs to go. YEA me LOL .. i am sorry that you are having this problem.. question do you also get the chest pain with the racing heart?

carrie

Ambien, tried it once and forgot my name. Neat. Amnesia is so embarrasing and unbecoming. Lorazapam works fine, thank you![/FONT][/QUOTE]


funny you should say this. my husband has to take this to help him self from a back injury and when he takes his ambien and doesnt go straight to bed its like a drunk 2 yr old ROFL.. so many stories LOL i tried to see if it would help better than the lunesta and i swear it the worst feeling i have ever had . so not for me !

carrie

Carrie- I don't get the chest pain EVERY time I get the palpatations or have the breathing/heart rate issues, but I do maybe 60% of the time. Sometimes it's only like an asthma tightness, other times it's like a "boa restrictor wrapped around my chest squeezing my ribs to breaking point" tightness, with a painful burning feel right in the middle of my chest, as well.

Thankfully, I don't have any tachycardia or arrythmia issues, I was relieved to find that out. I'm sorry that you do have that, though. I'm glad your cardiologist is monitoring well for you.

LOL about the amnesia. ;) I get that too! Or when I'm in the middle of a big flareup my brain stops working properly, so my words come out wrong. Instead of asking for a drink I'll say "can you get me one of those... you... know... t-shirt things... no... err... you know.... you got me one before... in the bathroom... it's... no, in the kitchen... what you put in... grrr!! Drink! That's it! A drink!" :rolleyes: My family think I'm a tad loopy!

Sandra- On the migraine thing- I also get migraines. I've had them since pre-RSD days (my RSD started in 2000) but I'd only get them once every 3-6 months back then, now I get at least two nasty ones a week, and it's been at that level for at least the last four years. Mostly I can take the edge off them with medications, but not every time. I talked to my RSD specialist about my migraines last year and he said that they're a good friend of RSD. :o I guess that's where the vascular issue comes in.

The medication I'm going on (the beta blocker) to steady my heart rate is called Metoprolol Tartrate. They're 50mg tablets and I've gotta start on a 1/4 of a tablet. She doesn't want me on too much too soon as it may lower my blood pressure, and I near faint when I get up quickly already, we don't need anything else lowering it!

I'll be starting it tonight and am off to research it more now- I never put any medications into me without first reading up everything I can find. Matt (my husband) likes to have a printout of all the side effects etc so that he can monitor me in the first 24 hours and make sure I don't keel over, lol :winky:

x Kate

You all are crackin me up with the ambien stories! Never saw a drunk 2 year old, but the picture in my head .........oh my :ROTFLMAO:

This heart thing is really scary to me because it is the very thing that got me into this whole mess. If it wasnt for a botched angiogram I probably wouldnt be here. :(

Plus heart disease runs in the family, and this RSD has been messin with my blood pressure and heart now for about 5 years. So far clear EKG's, and blood tests thank goodness. But every time it starts messin with me you gotta know it runs through my mind that this is it!

It's the big one! You hear that Elizabeth? Im comin to join ya honey! :D

I know I just dated myself with that last line LOL!

I get migraines. Last year before medicare I went to the ER thinking it was because I hadnt had any blood pressure meds in over a year. Thought it was giving me these whopper headaches, and I just couldnt take it anymore.

They did a CT scan of my head, and low and behold they found this osteoma in my head. They said that is what is giving me the headaches, and it is pretty serious. It is growing in the upper left nasal cavity, and man it makes the head hurt!

They sent me to a specialist, and he says he wouldnt remove it until I can put my finger right on the spot where it is in my head because of how radical the surgery is. Then he showed me what he had to do to remove it!!! :eek:

I will suffer the headaches LOL!!

All that to say this. It might be a good idea to go get checked out to rule out anything else it might be. It just might surprise ya to find there is something else going on besides RSD sometimes. I really hope there isnt, but make sure there isnt to be on the safe side :winky:

Luv ya all!! :grouphug:

You know Allen, I've wondered that every now and then- whether there's something else going on in my brain to cause the migraines- but then I freak out that there IS something wrong and I have a giant tumour or something.

I've never had any tests done. I guess because my Dad has always had migraines that we just assumed it was hereditary, then it became more of an issue in these later years because of my RSD.

Usually they're your run of the mill migraines- hurting at the temples, behind my eyes, and at the lower back part of my head etc. Occasionally I can point a finger to the exact spot where it's hurting, but that's not often.

But you're right, I should really get a scan done to rule out anything else. I'm glad you don't HAVE to have the surgery, that you can keep going how you are. I hope it doesn't bother you too much.

Also, I just wanted to add that the main brand name for the beta blocker I'm starting on is Lopressor.

x

Dear Kate, Allen, Carrie et al -

My heart (thump-thump) goes out to each one of you. What a fine but deeply caring crew we make.

Mike

Migranes
 

I never really put the RSD and migranes together before. I got my RSD in August '86 and migranes in Ocotber '87. Usually just one per week, but it lasted seven days. ;) I had so many x-rays, CTs, MRIs, LPs, etc, etc, over the years. Whew! No one ever came up with a cause.

Anyway, I take Ambien when the RSD pain is too severe to allow me to fall asleep. When I first started it, I did act like a drunk in about 15 minutes. but it really did "knock me out" so I could sleep. Lately, it takes over an hour to give me any effect. Like anything else, each body can react differently to things and change over time.

Mike

Hi. I am sorry for all you are going through. I hope your rsd doctor can see you too. I would call everyday for cancelations. That is what I do with my doctor apts and I have gotten in way early. I too get migraines and head aches/pressure. I have this possibly in my eyes so thought it was due to my severe eye pain. Anyhow I had by my neuro mris,etc to rule out anything else so I agree that you may want to ask about that. I always get fearful of saying it is rsd because one day who knows it may not be and I don't want to let something go. Well take care and hang in there

I had to go look because my mind that used to run like a well oiled machine, became this squeaky slow, forgetful.....ummm where was I? Oh yes!

I too am on Metoprolol Tartrate. The doc has me taking 25 mg twice a day. Seems to be doing the job for lowering the blood pressure, but not helping much in the anxiety or that awful feeling of breathing not working.

I sure do hope they figure out how to get you some relief, keps us posted on how things are going. I can use all the help I can get when talking with my doctor about this very subject.

Good morning Kate
 

[QUOTE=Cake;550164]Hey guys! :D

I thought I'd let you know how I'm going with my heart symptoms. Today I finally saw my GP (my regular doctor, you US RSDers call them PCPs) for the first time since wearing the holter monitor a few weeks ago.

She had a look at all the results and told me that within that 24 hour period, my heart rate went from 50 bpm pretty much straight up to 160 bpm numerous times for no apparent reason, such as in the middle of the night when I was asleep. That’s a fair range when you’re snoozing!

When I had the holter monitor on I’d had to keep track of when I noticed any palpatations etc but my GP looked at all that info and said there was no obvious pattern that linked my activities to what my heart was doing. So it doesn’t make much sense. But the good thing is there’s no arrythmia- even though the speed varies so much, the beats themselves are regular and I’m not missing any.

So the next step is to go on beta blockers. This’ll help even out my heart rate so it doesn’t go from one extreme to the other. I’ll start on 1/2 a tablet for a while and see if that helps.

Feeling like I suddenly can’t get a breath in, or feeling my heart thumping so fast it’s going to come out of my chest, is a daily issue at the moment and I hate to admit it, but it does worry me. I’m a tad over it already! I’m still dealing with the itching issue every night and it may be that the two problems are linked. But my doctor said it’s ok for me to keep taking the phenergan (antihistimine) for the itching until my pain specialist can take a look at me.

If all this (the itching and heart rate issues) is my body saying it doesn’t like the oxycontin anymore, I won’t be happy, as that’s the only medication I get any decent pain relief from, but I guess we’ll cross that bridge when we come to it. We’ll just take it one step at a time and hope these beta blockers do their job.

Kate, you are describing symptoms very similar to mine.

Are you taking NSAIDS?
NSAIDS have been linked to cardiac disease and, after taking them for 23 years I did have a heart attack. When I stopped taking them (Anaprox), I had to realize that they had not done a thing for the pain anyway.

The heart pounding so hard that it seems to want to jump right out of the chest sounds familiar. My pulse, instead of going way up, goes way down to as low as 42 bpm (sinus bradycardia) and my blood pressure fluctuates from 200/95 to 116/63 within minutes sometimes.

The itching is, most likely, caused by chemo-sensors or, due to circulation issues. RSD or the combination of RSD and medication can cause all those symptoms but, I don't believe that the Oxycontin is the culprit here.
I didn't take any medication other than Anaprox and my lower left leg itched so much, especially at night, I scratched it bloody many times. The itching has, for the most part, resolved itself now.

I am driving my Doctor up the wall but, I refuse to take any medication for my blood pressure or colesterol and only take, for the last three years, morphine when the pain gets too bad; about 500 mg a year.
Medication has its own set of problems and, quite often requires more medication to combat the side effects of the first medication and that can become a vicious cycle.

For the most part I rely on physical activity despite the pain and grabbing as much joy out of life as I can get. It has worked for me quite well since I decided to make friends with the pain about 24 years ago.
Acceptance is a large part of living with RSD without suffering.

I know that you are probably scared Kate but, believe that you can still have a good life and your symptoms will resolve in time.

I wish you well.

woodsman

Hi Kate and others, I don't post often because of the RSD pain in my left arm, but I read this forum all the time. When I read this post I wanted to jump in because I too have been dealing with the same issues since my RSD diagnosis in May 2007.

I started with migraines in December, 2007 but I did not know what was going on until I lost my vision for about 16 minutes back in January of this year. That incident resulted in a lot of test taking (MRI, MIA, etc) and showed that I have what is called a pseudo tumor cerebri, which is a fancy name for increased cranial fluid. My neurologist (I have several) feel this may be a result of the RSD. I never once had a migraine prior to the RSD diagnosis, so it is quite frustrating and scary.

I also have been dealing with the extremes in heart beats. Just a few weeks ago, for no reason, while I was watching TV, my heart rate jumped up to 150 beats per minutes. This went on for a few hours before it finally settled down. I had my purse in my hand, ready to go to the ER, but I took an Ativan and it finally settled. What a miserable experience.

Then I started to have chest tightness and pain, along with some slight heartburn, so I was started back on Prevacid last week and I am so happy to report the chest pain (really bad) and tightness have eased up a great deal. It is all so scary. I never know if I am experiencing a new problem, or a continuation of the RSD. I don't think my doctors ever really know for sure either.

It is all so hard to deal with sometimes and I can't thank the folks on this forum enough for sharing. It has gotten me through some really rough patches. Kate, I hope it all settles down for you so you can trust your body again. The fear of the unknown is so unnerving.

Lisa

Hi Carrie, I get awful chest pains. It's from my lungs when the heart acts up so do my lungs.

Hi Sandra, I don't get migrains. I use to have a terrible problem. I have been seeing a chiropractor (activator) he can't use is hands. The activator is a small spring loaded tool he puts it on the area of my spine that needs adjusted. He actually diagnoised my RSD. My regular MD didn't agree with him he went on vacation one day and I saw another doctor in the practice. He had done an internship with Dr. S in Philly and referred me on to see him.

I hope today is a less painful day than yesterday!!!
Take care,
Sherrie

http://i37.tinypic.com/33a9nap.jpg,

for sharing your stories and experiences.:grouphug:

Coffeebean- I totally agree with you here. That's why I've had my Dr do all these tests, I'd prefer to rule all the obvious things out first, then decide if it's RSD after that, rather than assume it's RSD when actually there could be something serious going on. I hope you keep going ok.

Woodsman- Forgive me if I'm totally on the wrong track here, but I don't quite know how to take some of what you said, so I'll respond bit by bit.

No I don't take NSAIDS. I took them for about six months back in 2002 when I had bursitis and shoulder impingement syndrome, but haven't had them since then. I gave myself a set time to be on them then that was it. They don't help with my RSD pain at all and never did, I took them for the bursitis pain. To be honest, I'm surprised a doctor would let you be on them for 23 years.

I've always been reluctant to take opioids, I didn't start on them until about 5 years into my RSD, and then only for a few months in a row so I could build my strength and ROM in my arm back up. I'm on the oxy now because I've thoroughly exhausted the lists of medications that work for us and I get good pain relief from the oxy. I don't take half as much as I need because I prefer to try and deal with the pain in other ways.

I'm not keen on taking medications for my heart, but I have to be sensible. I'm a mum of four young kids, I can't take risks with my health, so if I need a medication to keep my heart beating properly, then that's what I have to do.

Sorry but I'm sure the itching is from oxycontin. I'm allergic/have severe reactions to many medications and that is one of the first symptoms I get when my body starts saying "oh no" to the dosage/medication I'm on. Also, when I had my c/section with my daughter, I went on 20mg endones for a couple of days and my face itched like crazy each time, until the endone wore off. So for me to get the itching now is definitely linked to the oxycontin and I'm guessing my body is starting to ark up about it. I've been on it for about six months now.

I always weigh up the pros and cons of all the medications I try. Sometimes you can put up with the side effects because of the benefits of the medication, other times you can't. So far the benefits of oxy have far outweighed the side effects for me, but now that's starting to shift, so I am reassessing whether I should stay on this or not. The downside is there are no other medications that work for my pain if I do have to come off the oxy. But I'm hoping I can get some relief from another ketamine infusion. I've had 5 now and have mostly done well with them so I'll go down that path next.

I totally agree with you about physical therapy, I work my ding off everyday in that area. I've had my RSD for almost nine years now, since I was 23 so most of my adult life, and I'm very proud of the fact I've kept myself out of a wheelchair all this time. For three years I had no use of my arm or hand and no one and nothing could touch me, but I put everything into physio and massage and now I have great use of my arm and hand. If I hadn't have done that, then when my RSD spread to my leg in 2005, I would have needed a wheelchair, as I wouldn't have managed with the crutches. So you're not telling me anything I don't know!

I accepted it as part of my life a long time ago. I don't like it but I've accepted it and have definitely been able to make the most of my life despite it, such as having two more children, doing two 3-year university courses from home since 2003 and going on many holidays and trips with my family, regardless of what my RSD would prefer me to do. I don't suffer at all and I am very blessed and love my life.

Yeah, it's scary having heart problems. Because I don't want anything to happen to me. My husband and kids would like me to hang around a bit longer ;) and I don't want them to worry that something bad will happen. But having these heart symptoms are part and parcel with the RSD, then so be it. As with everything that has been thrown at me by my rsd in the past 9 years, I'll just have to work around it.

Thanks for your comments. I hope this has helped explain my situation a little better.

Kate