Does anyone with ET suffer from heart palpitations and missed heart beats? I've been experiencing the same and was wondering if it's related to this condition. I've booked an appointment with the doctor for next week to get checked over. I've been quite stressed recently so it may be related to that? I was just wondering if it could be connected to ET? Thankfully I also have an apt with the hemotologist next week so I can talk to him about it as well.
Et and heart palpitations: Does anyone with ET... - MPN Voice
Et and heart palpitations
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Camelian
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57 Replies
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Hi. I did have this for a couple of months but I removed a major cause of stress from my life and they have gone away. Best wishes. Jx
Stress all the way! Not ET.
Camelian• in reply to
Thanks for the replies. Its reassuring to think it's not related to ET. My mum had an irregular heat beat so I hoping it's not been passed down to me. I do suffer from anxiety and have been stressed so hopefully it's stress related and not anything to do with my heart I've got enough with ET 🤒
• in reply toCamelian
Sorry for quick reply was heading to grandson cricket but now cancelled. I was recently having palpitations by drinking coffee to late in the day. Like 2pm. Stopped that extra coffee palps have stopped. Sometimes even when I am really tired I get them. X
Camelian• in reply to
Thanks Lindiloo I know what it's like running here and there. I don't drink coffee thank God it would probably be a thousand times worse. I get a lot of stomach turning and feeling breathless which I Kno w can be related to ET but it's also related to anxiety. I just don't want to put everything down to anxiety when it might be related to something else? I've never noticed my pulse being irratic before and I got worried.
Yes, I too had palpitations and an extremely fast heart rate. Had all the workup and everything was ok.
Hi smiles thanks for replying. Its reassuring to know all was fine. When you say you had all the workups what investigation s were done?
Possibly, amongst many other factors. I went to see my optician for the third time and every time he says my eyes are dry and I need to drink 3.5 litres of water per day. Where does he get this figure from? I already drink a lot of water in herbal teas, but some herbal teas are diuretic so I decided to experiment with just drinking hot water instead. Amazingly, my heart calmed down. I have ET JAK2+ 63 years old and I have had irregular heart beats since teenage years. The liver is directly connected to the heart by a blood vessel, so whatever the liver cannot process, will go to the heart and possibly irritate or excite the heart muscle.
Get eye drops from GP or chemist, I get ocufresh lubricating eye drops, it is very good.
That's interesting sercher . I Do drink hot water I prefer it over cold water.
I've been reading a lot about what causes irregular heartbeat and it appears it can be stress and anxiety related but on the flip side can be a sign of a more serious problem. The trouble is thinking it could be a serious problem causes more stress and anxiety so a loop forms🤪. I'll talk to my GP on Monday and see what he thinks. Thanks for replying.
Yes I do, for me it’s a warning signal that fatigue is setting in. Thought it was just me.
Well I have been feeling very fatigued. To be honest this constantly feeling tired is really annoying 😣 as I said I've also had quite a lot of stress recently so maybe the combination of all.☹️ How long would it general last for you ?
It depends really, if I nurse it maybe two days but at the moment it’s no palpitations just breathless and it’s 5 days on. I think my platelets are on the rise again 😢
• in reply toWyebird
That is so correct about tiredness/fatigue causing palpitations as that is exactly when I tend to get them. When I have caught up on sleep I am fine.
Hi Camelian,
So interesting that you posted this because last week I went to my cardiologist for my 6 month appointment. I discovered I had ET Jak2+ following a heart attack 2 years ago at the age of 58 3/4. In the appointment last week he asked if I noticed any heart palpitations and I stated every once in awhile upon waking from a nap (from the fatigue we often suffer) or in the morning I feel skipped beats:/ He suggested an oximeter test; last weekend I wore an oxygen sensor on my finger through the night then on Monday returned it to the Dr ‘s office. On Wednesday the office called and it suggested I may have sleep apnea
I am being referred to a pulmonologist. So, another Dr to add to the list I too suffer from anxiety and refrain from caffeine. Can’t say if it is ET related; there is still some mystery about our illness! Wish you the best while doing your best to live a normal life and do what we can do by eating healthy, staying hydrated and staying active!
So they didn't think the missed beats were related to the heart attack you had?
My oxygen levels are usually fine as is my B/p and pulse Reading. I only noticed the skipped heart beats because I was lay on my arm and could hear the beats and I noticed the the rhythm was irregular.
As I said I've been under a lot of stress so I'm thinking it's related to that but I'm seeing the doc on Monday and the hemotologist next week so I'll mention it and see what they say.
Thanks for replying 😊
Im afraid mine aren’t due to that I’ve been tested
There is a "maybe" link between the MPN and arrhythmia. If you are JAK2 positive, theoretically the overproduction of inflammatory cytokines could predispose you to an irregular heartbeat. I don't know that there is much evidence to support this hypothesis, but it makes a bit of sense. Systemic inflammation is not our body's friend in a variety of ways.
We can have multiple conditions that are not directly related to the MPN. April 2018, I was diagnosed with paroxysmal atrial tachycardia. There is a significant family history of arrhythmias in my family. Looks like it did get passed to me. I could not tolerate the med they gave me, so I opted for the surgery. The catheter ablation was successful and I am now free of the atrial tachycardia.
It is really hard to figure out what is related to what with the MPNs. The truth is that the docs often don't know either. April 2019, I was diagnosed with a rather large brain tumor. This was not related to the JAK2+PV, instead related to the Neurofibromatosis Type 1 that I also have. Once again - I opted for the surgery. The tumor is resected - it was a pilocytic astrocytoma (Grade 1 tumor). It is starting to look like this surgery may have been curative.
I am fortunate to have two physicians involved who are two of the nation's leading experts on MPNs and NF1. There are not always clear answer to how these two conditions play out together. The database of people with JAK2+PV - NF1 - pilocytic astrocytoma is pretty small, so many of the answers to the questions I have are not clear. There is interaction between the JAK-STAT pathway (involved in MPNs) and the RAS-MAPK pathway (Involved in NF1). They are both kinase systems that are involved in a lot of bodily functions. How these two kinase involved disorders play together is simply an unknown. The NF-doc estimates there may be a total of about 20 known cases similar to mine in the entire country.
So this was a rather long winded way to say that the palpations/missed beats might have some relation to the ET, but may truly be an independent condition. For sure, if you are anxious, the cortisol, epinephrine and other stress related chemicals your body produces will affect the heart. You may not get any clear answers to whether the two things are related and simply need to treat each one separately-symptomatically. The one thing I would recommend is to find some ways that work for you to better manage the stress. As you might imagine, the last couple of years have been a might stressful for me. In addition to relying on my support network of family-friends-faith community, I started practicing Qigong. It has been very helpful as stress relief and helps to lower my heart rate and blood pressure. Qigong is really great at helping to manage the stress load.
Hope you get answers soon. All the best.
Wow you truly are a brave person Hunter to stay positive with all that on your mind. Positive attitude is such a healer I just wish you could by it from somewhere 😄 I'm working on though.
What is Qigong? I've never heard of it.
Thanks for all the info.
Well thanks. I must say that we are stronger together. The support I have received has helped me through it all, including support here on this forum.
Qigong (aka Gigong) is a set of practices or forms that include Tai Chi (aka Tai Qi Quan), The Eight pieces of Brocade, The 10 Qigong Forms, The Six Healing Sounds and more. These are moving forms of meditation-breathing-stretching that are very effective at creating mindfulness and a sense of inner calm. The underlying belief is that through gaining the ability to manipulate energy (Qi) through the body, better health and mental states can be achieved. Regardless of what you believe, all I can say is that it works. When practiced for healing, the practice is called Nei Gong. If you are interested in pursuing this, it is important to find a teacher (Sifu) who really is a skilled practitioner and not just doing this as a side bar.
The 10 Forms and 6 Healing Sounds are a really good place to start. Here are a couple of links to resources on this. ashevilleacupuncture.com/si...
youtube.com/watch?v=asJzU2K...
All the best.
Hi Hunter hope you're well . I just wanted to let you know I've been looking into Qigong and I'm awaiting contact from an instructor with a view to starting a class.
The 24 hour monitor I had recently identified multiple extra heart beats sometimes lasting for several beats. My GP surgery has been in touch for me to make an appt I'm obviously a bit worried about what's causing this but I'm thinking it's years of being stressed and anxious. I'm hoping it's not anything serious. I must admit the surgery phoning me to make an appointment got me a little concerned but the receptionist said the GP hasn't requested an urgent apt so I'm thinking he's not overly concerned- apt is booked for next week.
Thank you for the info on Qigong I'll let you know how my first class goes. I'm also going to do some reading around Qigong.
Glad to hear you are following up with the Qigong. It has been a big help to me. There is a book on this that my Sifu had me get, The Roots of Chinese Qigong, but Dr. Yang, Jwing-Ming. Rather esoteric, but very good information. One of the types of Qigong is Nei Gong - used for healing.
Do let us know what happens with the arrhythmia. Having been through it, I know it is rather scary to have another condition like this. Like a MPN isn't enough! Be sure to get the docs to talk to work with other, particularly the specialists. I have found that I sometimes have to be very assertive to ensure collaboration between providers.
You will be in my thoughts and prayers.
Many thanks hunter and I will keep you updated.
Hi Hunter I saw my gp and he confirmed I have a ectopic heart beat . He said rather than missed beats it's extra beats but it feels like missed beats. Anyway he decided to put me on a beta blocker Bisoprasol 1.25 mg. While I was there he did my bp and said my systolic BP was raised and the plan is for me to pick up a bp machine from the doctors to monitor over a week or so.
I haven't started taking the beta blocker yet and I'm really reluctant to start for a few reasons such as : I read up about this medication and fatigue can be a side effect. I get a lot of fatigue with my ET so don't need anymore because I won't be able to function 😵. Other side effects include dizziness, something I also suffer from and sickness. I'm in a real dilemma about what to do as the GP said the medication could reduce my BP which is favourable but having said that I may not even have high BP ?? Although the optician did mention I had torturous blood vessel s at the back of my eyes during a recent eye test which is possible related to high BP?? .
I'm really anxious about taking any medication but I know sometimes needs must. I've asked the GP to refer me to a cardiologist to rule out any underlying heart problem he did because of my history, my dad had a massive heart attack and died at 52 and his dad died young. My mum also had clots. He said due to my BP being elevated and family history he'll write to the cardiologist for advice? I just think if I knew there wasn't an underlying heart problem I could live with the sensations of the ectopic heart beat rather than take meds, the GP said on its own it's not dangerous just uncomfortable and he said it won't cause heart damage in the long run?
Hunter You said you went for ablation because you didn't get on with the medication and I'm wondering if that would be an option for me ?
I wondering if it's worth trying to bring my appointment forward with the hemotologist to discuss all this and how this condition my impact on my ET or visa versa.
I guess I'm just feeling very anxious at the moment I've gone from being relatively healthy to being diagnosed with ET a couple of years ago and now this which poses even more of a risk of having a heart attack or stroke or blood clot 😱
Sorry for the extra long post but I just needed to get it off my chest and maybe see if you have any advice? Was it a beta blocker you were put on?
Hope your well sorry again for the long post.
The med I had a problem with was Diltiazem, a calcium channel blocker. Turns out the Diltiazem + hydroxyurea = constipation on steroids. Had to take senna + docusate + Miralax. Other side effects were more minor. Turns out that the HU was a bigger part of that than I originally realized though.
Sorry to say I had trouble with a Beta Blocker too (Atenolol) . It was prescribed short term when I had a spike in BP. I had pretty severe dyspnea and asthenia even on a low dose. It bothered me so much that I discontinued it before I could find out if it would make me constipated and cause ED. I did a quick check on bisoprolol and it does not seem to have as many adverse side effects as some of the other beta blockers. Specifically does not include ED if you are male. Like all meds, there is a risk-benefit analysis you have to do. I am not an expert on this med, but it sounds like a reasonable thing to at least consider. You can always try it and d/c if you do not like the effects.
Like many types of arrhythmias, anxiety is a contributor to ectopic heartbeats. Managing your stress would be very important to your treatment plan (reference our earlier conversation on Qigong). I also noted a link to magnesium deficiency. (I am more aware as I was recently found to be magnesium deficient). Did your doc check your magnesium levels? There are other nutrients/electrolytes that can impact your heart as well.
I think you are quite correct in noting the increased risk in having both ET and a heart condition, particularly with a family hx of heart disease. You really cannot afford to just do nothing and hope for the best. I would strongly recommend following up with a cardiologist ASAP. Make extra sure the cardiologist and the hematologist collaborate on your care. Be VERY assertive on this.
The cardiologist is the best person to advise you on your treatment options. I do believe that catheter ablation can be used to treat ectopic heartbeats. Whether it is the best option for you is something you will have to determine. This surgery is not something to be taken lightly - it is a heart surgery. The short version is that they use a catheter to insert wires into your femoral artery and pass the wires inside your heart. From there, they locate the defective nodes and ablate (burn ) them. You are typically conscious for most or all of the procedure. There are definitely risks, but when it works it is curative. Note that my surgery was curative, however the procedure triggered atrial flutter, that required extra ablation to fix. The procedure also triggered some low grade reactive thrombocytosis, but that was expected. In all I am glad I opted for the surgery, but it is not the right choice for everyone.
Please bear in mind that I am just another MPNer just like you. I have had to learn rather a lot in recent years, but I am not a medical professional. Do please educate yourself about this new condition. You will find that you need to do secondary reading on things like the vagus nerve (which is a really important thing to understand), some basics of how anxiety effects you biochemically (adrenalin and cortisol effects), the role of the JAK2 mutation (if you have it) on inflammatory cytokines and the role these cytokines play in your body, etc. I frequently find when I start reading the professional literature, that I need to do secondary reading to have the foundation and context to understand what I am reading.
Well I hope that helps. All the best to you.
Thanks for replying I Hunter I do appreciate you taking the time.
You're completely right about not doing anything and hoping for the best so after much deliberation I took my 1st Bisopralol tonight. Over the last few days I've been monitoring my BP and it's not been that high however on taking my pulse I noted the ectopic heart beats continue so I thought it best to at least give the meds a try , they might even help ( that's me trying to be optimistic) hopefully I won't have too many side effects I'm female so don't have to worry about the ED. Other side effects are dizziness and fatigue so I thought I'll start tonight because I'm off work till Tuesday so I won't have to worrying and can rest up if need be. My condition is ET jak2+ at the moment I'm only taking aspirin but my haemotologist said I'll go on hydroxy when I'm 60 I'm 58 now. I don't now what I'll be like starting the hydroxy I was bad enough with Bisopralol.
Thank you again for replying I'll let you know how I get on.
Glad to hear you decided to brave the Bisoprolol. I hope it works for you with little or no side effects. I think you will find that it does help with the ectopic heartbeats. Hopefully it will be enough, at least for now.
I would not take starting HU at age 60 as a given. If you are in the UK, know that the British Hematology Society recently raised their definition of "high-risk" to age 65. That is not to say you do not need to consider chemotherapy given the cardiac issues plus the PV. Just do not take it as a given. There are other chemo options as well and some docs prefer peg-interferon and/or ruxolitinib to HU as first line tx for PV.
If you want to see an alternative tx view, read this interview with Dr. Jerry Spivak (who is also my MPN consultant). mpnforum.com/spivak-how-i-t... .
Certainly not all agree with this approach, but it turned out to be the right one for me. Note - I am 64 with JAK2+ PV and am phlebotomy-only. No aspirin either as it is a bad choice for me due to my situation with my age and other medical conditions.
Meanwhile good luck with the heart issues. I know it is a lot to handle, but I am confident you can manage it. All the best.
Thats an interesting read I note it's pv rather than ET which is the mpn I have however there is reference made to ET. I did speak to my heamotologist about starting HU at 60 and asked if that would depend on my platelets increasing and physical health status ? He said as the risk of a stroke increases after 60 it will be then I start? Tbh though I was a little confused about that as my platelets have always been under 500, and to date and fingers crossed I've had no thrombus, my spleen is normal size or was 2 years ago when I had the scan. I do have fatty liver but that can be addressed by loosing a bit of weight and adapting s healthier life style I don't drink much so it's not related to that. However like I said there is heart problem s on both sides of the family and of course this ectopic heart beat, sparodic systolic hypertension, and the optician identifying tortuous blood vessels behind the eyes?? The optician didn't seem that overly concerned though and just told me to mention it to my GP because it could be related to hypertension??
Anyway let's see how I get on with the Bisopralol and I'm working on getting healthier, I now attend the gym instead of thinking just being a member gets you fit😄
I am in the UK so I'll also start reading more about the treatment options for mpns so I can make an informed decision about how best to proceed with my treatment when the time comes. I think up to now I've just buried my head and hoped a cure will be found.
Thanks again for all the information Hunter.
Please do take the time to educate yourself about the treatment options as well as the underlying disorder and its broader implications. There are different treatment protocols for ET, just like there are for PV. The Spivak protocol for PV just one example. I read about 10 different tx protocols before I elected to follow the recommendation from Dr. Spivak.
I got curious since it has been while and looked at the ET literature - found this article which was very detailed and quite interesting. ncbi.nlm.nih.gov/pmc/articl... . Note: it does use age 60 as the start point for "high risk" and these authors do use hydroxyurea as a first line choice for cytoreduction. There is a lot more out there and there are differences on how docs regard treatment for ET and the other MPNs.
There is a good bit to learn about the JAK2 Mutation and its impact on our bodies. It goes beyond driving hematopoiesis. The JAK2 mutation also causes the overproduction of inflammatory cytokines. Increased cytokine load has significant impact and plays a role in a large number of inflammatory diseases. It is thought that many of the secondary symptoms people with MPNs experience are the result of cytokine overload. The kinase systems are quite complex and ubiquitous in what they do. I am still working to develop enough of a knowledge base to actually understand it. If you decide to learn more about this, expect to do LOTS of secondary reading just to understand the basics of what is in the literature.
Here are a few articles you might find of interest.
The JAK2 Mutation impact
ncbi.nlm.nih.gov/pmc/articl...
Here is an article on the role of inflammation on heart rate.
ncbi.nlm.nih.gov/pmc/articl...
The role of cytokines in MPNs
sciencedirect.com/science/a...
There is lots more out there. You do have to sort the wheat from the chaff and the research from the advertisements.
All the best
Hi Hunter just a quick question. I've been taking the Bisopralol now for about 5-6 days and my pulse has dropped quite low it's been between 51-57. I've felt quite dizzy today had a headache and was quite cold. From what I've read these can be symptoms from the meds. My concern is the pulse dropping and the circulation issue in relation to having ET and the risk of clotting? . I will speak to the doc tomorrow if things don't improve but I was just wondering how low your pulse went when you were on beta blockers. Thanks in advance.
The main symptoms I had were asthenia and dyspnea. Also had hands and feet get really cold. It sounds like tou may be experiencing bradycardia. Possibly your dose is too high. Definately follow up ASAP. I do not know of any specifc risk vis a vis the ET and bradycardia but can understand why you would worry. Worth checking that out for sure even if just for peace of mind.
Thanks hunter I appreciate your reply. I will give the doc a call tomorrow.
Please let us know how it goes. Thoughts and prayers headed your way.
Hi Hunter. so spoke to the haematologist on Friday and he basically said that the GP should refer me to the cardiologist and for an echocardiogram to find out what's going on with regards to the ectopic heartbeats. He didn't seem overly concerned about the ectopic heartbeats but the nurse I spoke to prior to speaking to the haematologist acknowledged my concern with tegards the extra risk of clots in relation to the high blood pressure and low pulse rate.I'm seeing the haematologist on the 20th of February so I'll be discussing it further with him then.I saw my GP with regards to the low pulse rate and he felt it was better for me to stay on the bisoprolol in spite of experiencing dizziness , headaches etc he said the side effects should settle down and the emphasis should be on reducing the ecptopic heart beats. He informed me he's spoken to the cardiologist and he does want to see me and the gp has also referred me for an echocardiogram so I'm pleased about that. gp took my BP and the systolic was high again 170. I told the GP that I've been taking my blood pressure over the last week to monitor and on each occasion it's been more or less in normal ranges so I couldn't understand why it was high again. I did say that I've been doing it on an electronic monitor which arnt always as accurate as the manual one the doc uses but I explained I have used three different machines so I would have expected that the reading was right? Or close to his reading but it was miles apart averaging at between a130. The GP said he trusts his monitor and confirmed it's be callibrated. He wants me to continue to monitor my BP and I said I'd buy a new monitor which I did and hay ho the reading was in normal ranges again so I don't have a clue what's going on? I know some people can get white coat syndrome but to be honest I've never been nervous about having my blood pressure taken because in the past it's always been in normal ranges?
The hematologist was a bit concerned that the optician didn't give me a letter or something to me to give to him or my GP informing of the severity of the torturous blood vessels behind my eyes and after discussion with my doctor about this as well it's been decided that I'll get my eyes tested again and get a second opinion on it.so for now it's just to continue taking the bisoprolol wait for my appointment to come through from the cardiologist and for the echocardiogram and continue to take my blood pressure with my new machine which will hopefully giving me a correct Reading?
Hope you're well .
You definitely need to follow up with a cardiologist ASAP. A proper diagnosis of the cause of the ectopic heartbeats as well as treatment options is very important. I am assuming you have already ruled out medication side effects as a cause of the arrhythmia. Likewise with the possible electrolyte causes. If this is electrophysiological, then treatment options will be available. Certainly there are other medication options as well as a decreased dose of your current med.
Regarding your sphygmomanometer, most of the decent electronic devices are accurate to within 5 mmHg. One thing I did when I had this same question was to take my device in to the doctor's office and take my BP right after the nurse took it with the calibrated device in the office. (mine was accurate). There are other variables. White coat syndrome is a real thing, even when you are not nervous. Another factor is that the nurse usually takes your BP without giving you time to sit and relax for 5 minutes which is the only way to get a true resting BP. At least one part of the issue can be a BP that is too easily elevated, even when the true "resting" BP is much lower. Cardiovascular deconditioning can be a big part of this.
If you have the JAK2 mutation, there might be a link to hypertension. Here is one example ncbi.nlm.nih.gov/pubmed/296... . I also believe that the systemic inflammation that can come from the JAK2 mutation can contribute to problems like hypertension. Inflammatory cytokines can also contribute to arrhythmias. Here is one example of that ncbi.nlm.nih.gov/pubmed/301... . I have no idea whether this applies to your situation, but it is worth consideration even if it just conjecture. There is a lot about this that is not well understood and more information emerging all the time.
I think you are wise to get a second opinion on the tortuous vessels in your eyes. I would expect this is linked to the hypertension. If you are averaging around a 130 systolic, that would be low Stage 1 hypertension. Particularly a concern if you are having big spike. Also a risk factor in conjunction with ET.
I hope you get this all sorted out ASAP. More thoughts and prayers headed you way.
Thanks for the replies.
The only meds I'm taking are aspirin, vitD and now bisoprolol. I was taking citalopram but I stopped this with a view to trying CBD oil as an alternative but I haven't started taking the CBD oil yet because of all the problems I've been having. I did ask the GP if I should start citalopram again. I told him I was concerned about taking citalopram long term because of the risk of bleeds but he said he said the risk is very low. It can also effect the QT interval but he looked at my recent ecg and said the QT interval was fine. I don't like taking medication opting to explore more natural ways of managing condition s instead in this case stress management but I guess sometimes needs must.
Very interesting read Hunter with regards to other potential reasons I might be having these problems I guess the answer is a healthy life style, good nutrition and reduce the stress.
With regards the BP spike when at the doctors it could be any of them causes you mentioned. I'll have to just keep monitoring myself and I'll get my BP taken somewhere else to compare both mine and the GPS readings.
My focus now is to get to the bottom of this whole thing.
And if required getting on medication to reduce my BP. My only concern is isolated systolic hypertension is going to be harder to regulate as reducing the systolic will impact on the diastolic and may result in that becoming to low there's also the issue of my pulse being low with the Bisopralol??? With all this worry no wonder my BP is what it is.
While on the subject of medication I'm prescribed lansoprazole but only take them when required. The GP has advised me to start taking daily to reduce the risk of a gastric bleed in view of me taking daily aspirin and possibly restarting citalopram?? Any thoughts on this?? I'm going to be rattling around soon especially when the hydroxyurea comes into play which by the way I hope isn't just yet because taking this med i am dreading.
You are fortunate to have a smart doc. Per ePocrates, here are some of the contraindications for citalopram.
electrolyte abnormalities, uncorrected
QT prolongation
congenital long QT syndrome
ventricular arrhythmias
bradycardia
recent MI
caution if QT prolongation family hx
caution if torsades de pointes hx
Adverse reactions include:
QT prolongation
torsades de pointes
serotonin syndrome
abnormal bleeding/altered platelet fxn
dizziness is a 'common reaction"
The SSRIs can be very helpful, but like all meds they do have potential adverse effects. FYI - I had to d/c bupropion (another class of med) as it caused a non-specific t-wave abnormality (heart rhythm abnormality). Stress management is very important. Anxiety does very bad things to the body. Some do feel the CBD can help with this, but I am cautious re. CBD. It is thought to potentiate the blood thinning aspect of aspirin.
Controlling the BP is always important, especially when you have ET. It is a significant risk factor. I wonder about deconditioning (which was a big issue for me) and its impact on your BP. How is your cardiovascular conditioning? Improved cardio can significantly reduce BP. I used to be in stage 1 hypertension. I now back to normal (115/75). Result of improved cardio conditioning and improved erythrocyte levels. I did not tolerate bet=blocker or Ace Inhibitors well, but had great success with an ARB - Cozaar/Losartan. I continue to take 12.5mg (half minimum dose) as prophylaxes due to my history. Interaction with the Bisopralol would be something you would have to be mindful of.
Regarding the lansoprazole, I would say that would be a big YES. The aspirin can be very hard on your stomach, even the low dose enteric coated. If you are JAK2 positive, you may already have a propensity for inflammation. I have GERD that is so bad that I developed a hiatal hernia. I have been taking Esomeprazole (Nexium) daily for many years now. No question it is better than the alternative. Am also careful about what I eat/drink to avoid complications.
Regarding the HU, I would not worry about that just yet. Unless you are in a high risk group, it would not be recommended anyway. Some people tolerate it OK, while others (me included) do not. There are options if you need the cytoreduction, but you may be fine with just aspirin.
Good luck sorting this all out. The challenge is that it is hard to tell what is related to the MPN and what is not. We can have conditions that are truly unrelated. Sometimes these relationship between conditions is not clear or not well understood. For instance, I have neurofibromatosis type 1, which is a Rasopathy - another kinase based disorder. I also have the JAK2 mutation, which is a tyrosine kinase based disorder. These two kinase systems interact with each other in very complex ways. Both systems effect tumorigenesis and apoptosis amongst many other things. Sorting out what is what is a bit challenging. While some things are "unrelated" they all occur inside the same body. My list includes: JAK2+ PV, Neurofibromatosis type 1, NF1 related pilocytic astrocytoma (brain tumor - resected), paroxysmal atrial tachycardia ( catheter ablated), BPH, hx of hypertension, GERD, eczema, plantars fasciitis, osteoarthritis, hx intermittent hypercalcemia, chronic insomnia. The doc just found a bone tumor on my mandible that may or may not be related to anything else.
That was a really long-winded example of just how complex this all is. it is a challenge to sort it out. Sometimes the docs just can't figure it out either. You are right about focusing on your overall health, diet, exercise and stress management. I have found increasing exercise to be very helpful. I also have been practicing Qigong to help with health and stress management. That has been very helpful too.
Hope you get answers soon.
Hi Camelian, if you are taking Anagrelid you might be suffering from side effects that make the heart pound, as mine does. In this case, I Tool the 4 capsules far apart from each other. After 1.5 years it started again, therefore my doctor reduced one more pill. Now I take 3 and I am so much better! More energy too.
Hi anag. I'm only taking aspirin at the moment so I don't think it's related to medication. I'm hopeful it's stress related in which case I can do something about reducing the stress.
It's just another worry on top of the worries related to ET☹️ thanks for replying it's nice to hear from you.
Could you be anaemic?? I regularly am and experience very severe and debilitating palpitations...worth checking it out?!
Best wishes, K
Yes; I have ET and was recently diagnosed with atrial fibrillation.
VMS
As a result of your ET?
don't know --except the AF came along with the ET. I try to keep my hemo and my cardiologist in the same loop. Am doing fine, though, as long as I get enough exercise, sleep and keep to a very low alcohol intake. This with b-12 supplements which takes away the fatigue. No more palpitations. Oh, yes -- do what you can to reduce stress -- constantly.
Good luck!
VMS
Thanks chaster I will certainly take your advice.
I'm glad you mentioned the b12 I suffer a lot with fatigue to the point where it's getting hard to get through the day. I work full time in a busy environment and there are parts of the day I could just put my head on the desk and sleep- I don't for obvious reasons like I'd probably get the the sack☹️I've heard of people having b12 injections to give them a boost but I wasn't sure if it was ok to take b12 with ET. I'm definitely going to mention it to the hemotologist next week. It would be sooooo nice to have some engery 😁
Hi Camelian, first of all I get fast heart beats and every now and then I get what I can only describe as a thud to the chest which really panics me. My consultant said to see my gp, wasn’t really interested. I have ET Jak2 pos. I’ve just had my second ultrasound scan of my heart awaiting results. And have worn monitors to record my heartbeat, but typically nothing happened whilst I had it on. I agree it’s probably stress related but only started since diagnosed. I’ve changed to decaf coffee to see if that helps, which it hasn’t, and it is worse after having alcohol. Secondly I’d be interested to hear what your doctor says regards B12 injections as that’s something I was thinking of having to help with fatigue and bone pain. I did take turmeric but my nurse told me not to as it could affect my platelet count. Regards Jackie
Hi Jackie and all who replied to my post. I seen my GP today he sent me for an ecg which he said is procedure and once he has the results he'll refer me for 24 hr monitoring. The ecg technician said I have benign ectopic heartbeat which she said is an extra beat which causes a pause which feels like a missed beat. I was told it wasn't affecting the heart function but it was ack poornowledged it felt uncomfortable. I feel a bit better knowing my heart is working ok thus far. I'll wait to hear from the GP now and also speak to my heomotologist on Thursday. With regards the B12 my GP said my levels were fine at my last blood test? Back to the drawing board for the fatigue ☹️
I too have had palpitations and skipped beats in the past and was told that they were PVC's and benign. I was diagnosed with PV 5 years ago. I also suffer from anxiety and sometimes it's hard to tell what's what! I have recently (over the past few months) been having more skipping and palpitations that have come and gone, some days more noticeable than others... My hematologist doesn't seem to think much of it as I am taking Propranolol, but I will see my PCP next week and see what he says! Fingers crossed it's anxiety, lack of sleep, stress taking over! Good to know I'm not the only one... thank you for posting!
Thank you for replying. I feel the same it's reassuring to know I'm not the only one experiencing palpitations.
Your right about it being hard to pinpointed the cause because stress and anxiety have the same symptoms and the problem is the more you think about the symptoms the more stressed you become😟
I'm glad your surgery went well and I hope you're on the mend.
Hi Camelian - I've had ET since 2004. I went for pre-op appointment for unrelated surgery in August 2018 and was told I had afib and needed to get a letter from my cardiologist assuring I could safely have the surgery in September 2018 . Cardiologist diagnosed afib and now I take 80mg Sotalol twice each day. Afib is under control and surgery went smoothly.
Best of luck to you....Bippers
Sorry the surgery comment was to Bippers 😂
Ive had heart palpitations, but once i learnt to keep stress at bay and lowered my coffee to one cup a day, they went away.
FYI - I have had great success with Qigong for stress management, health and healing.
I have Jak2 and AF (palpitations etc), but I also have had Rhematic Fever as a child.
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