Chest Pain Regardless Of Posture - Is This Still Pots

[E246]

I have always suffered a lot with chest pain and have always felt nervous that maybe this isn't pots but a cardio problem. Like other people who have chest as a main symptom of Pots I never know whether this time i am going to have a heart attack. I experience extreme pressure in my chest, raised heart rate and adrenaline fuelled anxiety or super vigilance as i wait for the symptoms to go off.

I have been much better until just before christmas and have had a real relapse. I woke up the other morning and whilst still lying down i got terrific pain and spasm that started in my back then wrapped around into my chest. As this isn't about posture is it still Pots???

I have a whole range of different chest pains including pain down to into my arm, intense pressure, sharp pains. When this happens I also feel very unwell and once it starts it commonly goes on all day or at least i feel ill all day.

Today i feel very down, it definitely affects my mood which is generally optimistic. I had an echo 5 years ago and the ejection was only 55%, then i had a CAT but without contrast which showed no calcium build up. Then i had am mri which not much was said about. The conclusion is mico vascular angina but not sure this quite fits with the pattern of a few days a week being too ill to leave the house or do much then other days where i can go for a walk or swim with no symptoms.

I have just moved house so will no longer see the doctor i normally see and looking for some reassurance from anyone else with similar symptoms.

Thank you.

[Katybug]

I see you have HEDS. Have you considered costochondritis (sp?) ?

[SarahA33]

Hi, Emma--

Do you have migraines?

I was told I have something called Prinzmetal's Angina. (squeezing in my chest, difficulty breathing, tachycardia, and even in some occasions eye pain, I've had capillaries in both eyes break and it was attributed to a spasm) The chest pain is better now that I'm on Ivabradine and Clonidine. I'm not sure why the combination has helped, maybe the clonidine has helped control the norepinephrine spikes - adrenaline, which is a vasoconstrictor. But, I have migraine's and Rayaud's, too, which actually led to the Prinzmetal's Angina diagnosis.

I've had an a really thorough cardiac workup recently at the Cleveland Clinic, so I know it's basically a combo of my POTS and possibly this angina that's causing the chest pain for me. I know many people find relief for chest pain with Calcium Channel Blockers, but there's an interaction with Ivabradine, and I see your taking that. Also, Nitro, or even Aspirin, has been helpful for many. Have you considered talking to your dr. about those? I mostly get my Chest pain when I'm relaxing and laying flat. It rarely happens when I'm out and about, running errands, etc.

I'm sorry that you are feeling a bit sad about this, I know it can be frustrating and scary. I know what you are going through, I wish you relief for your symptoms and some answers.. Sarah

[statesof]

Hey Emma, I remember having some of the similar type of chest pains as what you have posted about in the past. I had many heart test done (30 day holter, tilt table, treadmill stress test, echo to check for PFO) and all they found was that I have a PFO and a bicuspid aortic valve (which I had known about for years) but no real explanation for my chest pain/ pressure other than somehow it being related to POTS or a type of microvascular angina.

I found that a calcium channel blocker has helped me a lot, but I still have days that are randomly worse, or rather a series of days that are worse, where it is almost like my POTS hr variability seems to set things off. So I'm always having to notice the days where my chest pressure seems to come up again and be vigilant about getting it under control, so for me this means taking an extra dose of the cc blocker throughout the day, taking an aspirin, and wearing compression stockings (all okayed by my doctor). If don't take some of these measures then my chest pressure tends to last for days at a time, and seems to have more of an ability to worsen more often. And I too have a strong migraine history but was not told if this would had any relation or not.

[E246]

Thank you for your replies, i have found them very reassuring.

I thought i was over Pots after 5 years and never had to think about having a flare.

Then just before christmas my stomach started to hurt and swell and i felt nauseous. So i had a colonoscopy and the meds for that caused 10 hours of surges and i couldn't take the second prep. The only time i felt good over all of Christmas was while i was under the conscious sedation which obviously settled my nervous system down.

The stomach swelling then changed into chest pressure, pain and breathlessness with regular evening declines and it gradually dawned on me that i was back into full blown pots.

I had been on Verapamil but when i feel well i do stop taking it and I think this is what had happened. However i have gone back onto it and it doesn't seem to be working as it did before. I too usually find a combination of this and valium (diazepam) really keeps things in check but i just can't get the symptoms under control.

Yesterday it was chest pressure and pain and today my stomach has swollen and i feel sick.

I start to worry there is something more wrong with me than Pots as it is just so painful and as doctors do not know quite what to do i just feel i get left to suffer.

The surges are very difficult and put me into a hyper vigilant state. My body feels wracked with pain.

Sorry this isn't very cheerful but i feel so tearful and i rarely cry. Just thought it was all in the past.

I have just moved 350 miles to a new house 7 weeks ago so will now access a new set of doctors and i am hoping this may help through light on my symptoms and so effective medication. But i fell down the steps 3 days after i moved in and fractured my ankle in 3 places so this hasn't helped as it happened two weeks after my pots had kicked off again.

I don't have migraine and i don't think it's muscular as the pain and pressure is in sync with raised BP and HR.I do get chest pain if i stand still but can now walk reasonable distances.

Has anyone had an angiogram? Not that i want one. I haven't had an exercise test either. And how often should these tests be done?

[statesof]

Hey Emma I have not had an angio, but I think the treadmill test is helpful because they look at your heart at rest and as your hr is increased. I think the hardest thing for me was that even though all my tests came out "normal" other than the pfo, it didn't change my symptoms. And for me once the chest pressure comes back it does seem to take an effort to help it normalize, I'm on verapamil which I take everyday regardless of how I feel, but I'll do the aspirin and possibly Xanax thing as well if I'm feeling that badly. It is really difficult though because on my bad days it felt absolutely horrible I wouldn't even want to get up and see people, because the chest pressure was so bad. Sometimes doing something like a minute leg floor exercise periodically throughout the day would help, and just resting, drinking a lot of water, and compression stockings and just waiting it out. My chest pressure also too sometimes seems to manifest with nausea or an overall abdominal discomfort/ tightness, it can be strange.