Pots Symptoms, How Do You Handle Really Rough Arrhythmias

[Maxine]

Hi-----

I've been having some really bad POTS set backs, and getting some of my old symptoms back that made me crash in 2000/2001.

I'm wondering if any of you get arrythmias like this---------(I know some of you get some really rough ones)

Last evening I had a really rough arrythmia that made my vision go blurry.

It felt like it was an effort for my heart to beat. It started out like one of my usual PVCs or PACs, but this time it continued to get worse from there. It felt like my heart was trying to stop, and like I couldn't get my breath. Then if felt like my heart beat was disorganized.

I have been over doing it lately. I've been so worried about my brother's family, and also very upset at seeing him suffer.

It's pretty scary seeing a man that's still pretty young have his cancer spread despite the chemo that he's dealt with for three years. I know stress makes my POTs worse, but the arrythmia was a very unpleasant surprise. I haven't had one this bad since June of 2005. The time after that I had one about half as bad, but my loop recorder didn't catch it----I think it was the summer of 2006.

MY spine instability has gotten worse-----------(sorry to bring this up again)----but this has been really hard to handle on top of everything else.

I do have a weird virus. This time my sinuses are draing down the back of my throat, and I have a very stiff neck that is worse then my usual neck pain, and it wraps around to the frint of my neck. My left ear hurts, and it feels like my whole spine is throbbing, especially at the top by my cranial area.

I called Dr. Grubb's office since the hospital he works for is close by, and a very nice doctor retured the call because Dr. Grubb was not available. He just insisted that I go on bed rest, but didn't really have any words of wisdom to say about the arrhythmia. He didn't seem really alarmed, even when I told him about the blurry vision-----although brief.

I had every intent on going to ER, but it was my sister in law's birthday. We were going to drop off the cake, and the vegetable lasagna I made earlier in the day, and just go to ER. Then I felt panicked about going, and having them just cause more stress. I decided to hang in there and be with my family. They have had it rough, and I didn't want to spoil her birthday. My brother has symptoms much worse then this.

I don't think I'm contagious because I've had the virus for over a week, but for some reason I felt worse yesterday.

I received my latest orders for another full spine MRI, and hope this will help explain why my neck and mid back have been in so much more pain then usual.

All of this is very depressing, and I've struggling for a while. I do have a therapist.

I also called my new PCP, and he said if I go to the ER, he said to go to the ER at the hospital he works for to make sure I get the proper medical care. He's been pretty great about understanding my complex health isses, and not dismissive at all.

I really need to lay down right now--I feel so terrible physically and emotionally. My husband had to go to work, and I'm a little scared being alone today.

You all take care.

Sorry for the added venting.

Maxine :0)

[all4family]

Hi Maxine,

I am so very sorry to hear of all you are going through. I don't have arrhythmias that I know of, so I don't have any advice, but want to say how very sorry I am for how you are feeling. I do get blurry vision, and have even had blackout vision where my vision goes dark with a circle of light in the center that keeps getting smaller till I can't see. I have also had that feeling like my heart was trying to stop, and a feeling like my heart did completely stop. followed by a feeling of my heart racing. I know when your heart is doing funny things it can be real scary, and I am so sorry for you.

And I know how stress effects me. And both the stress of worrying about your brother, and the stress of having a virus is a lot for a body to handle! I really get what your are saying about going to the ER. It's like you know you should go, but you also think what are they going to do?!? And will it help, or make things worse? But you do have to take care of yourself. I am glad you called Dr. Grubb, and your pcp, and I hope you are up and feeling better in no time.

Please take extra good care of yourself, and be extra kind to yourself. You deserve it. Healing Hugs to you.

Suzy

[MomtoGiuliana]

Hi Maxine

You are going through a lot of stress right now. I am as well, so at some level I think I can relate. My POTS symptoms are definitely flaring up right now. I have had weird episodes of odd heartbeats many times over the years--including episodes where my vision dimmed for a very short time. My POTS specialist has never been at all concerned for whatever reason.

I know how hard it is to give loved ones the support they desperately need, when you are also grieving/in pain and feeling unwell on top of that. It is a huge challenge that many will never understand--and you wish no one would have to.

I'm glad you talked to a doctor before making the decision to go the the ER. I have found that this is a wise action, over the years. It's often so hard to know what the best action is though.

Please rest. If possible visit a quiet outdoor location where you can sit or lie down. I don't know---this helps me. I plan to bundle up and go to the seashore by myself tomorrow, while my daughter is at "pony camp". It will be almost deserted and I can have some real time by myself and with nature.

I hope you feel better today.

[EarthMother]

It amazes me how the heart still can pump enough blood to our vital organs when we are having a bout of erratic beats. But it does seem to do just that. I suppose that is reassuring on some level. It certainly doesn't do a thing for me tho when I'm in the middle of a surge.

I'm so sorry this is such a hard time for you. It seems when we are faced with our own personal "perfect storm" that each body sensation and reaction feels amplified. Our emotions, the pain, even temperature seem to be on Mr. Toad's Wild Ride.

Despite the complexity and suffering caused by your disordered circumstances, it does sound like you have a wonderful support network of physcians/therapist. I am also blessed to be surrounded by people who are genuinely trying to help and seek my best interest.

I guess then, all we can do is wait ... close our eyes (and our mind) when we can ... until this storm passes.

Me? I am going to visualize MomtoGiuliana's seashore visit and pray that each of us find a peacefull port to rest and replenish.

[Ernie]

Hi Maxine,

I am sorry for all the stress you are going through. It is hard to have a loved one being sick and even worst when having a disorder that stress is a trigger. You are very devoted to helping your brother and his family. You have to be careful about yourself because your health is fragile.

I don't know if I have the same arythmias as you do but sometimes I feel that my heart will stop and it frightens me. The doctor said it were PAC and PVCs. I also have the K+ problem which makes my heart feel like jello and unable to contract. It might be safter to go to the ER when you have those episodes.

[Tammy]

It's probably the combination of a virus and stress, which you've already pretty much identified. The best thing you can do is drink lots of water and try to relax your mind/body. Once you feel at ease, if the arrythmias continue, then you may want to go to the ER and they might be able to watch it on a monitor to try and catch something, however my ER never catches it and sends me home 6-8 hours later feeling just as sick. Hope your heart gets back on track soon

[Maxine]

Thank you all so much for your support and understanding.

I wish I could be at the ER when this happens so they can catch it. It's so frustrating that I had this loop recorder in for three years an nothing was caught put PVS and PACs, and a lot of sinus tachycardia. Half the time I didn't even notice those. This is something different, or it's possible some vagal response to low BP. Today I checked my BP and heart rate, and it fell from 116/75 to 80/54 in the amount of time it took to take my BP----seconds. At the time I was trying to get ready to go to my brother's house, and had to lay down often while making the lasagna. I sat on a stool in my kitchen, and struggled. I know I should have been in bed, but I thought the virus was clearing until yesterday.

I don't know if my spine compression can affect my heart. I know brain stem compression can. Another thing that has slowed me down a lot is the thoracic spine pain. I'll have my MRIs done very soon, as I received the orders for them in the mail a couple days ago from my orthopedic surgeon.

I'm also upset my colonoscopy had to be cancelled due to my virus. The surgeon wants me at 100%. She has seen my records, and saw my low BP readings, and all the notes on my spine instability, and doesn't want any other complications. She's great, and also a very compassionate doctor. I told her secretary I felt bad about the whole thing, and she told me the doc felt bad for me.

I almost don't know how to handle a doctor who does everything right. We are all so used to docs dismissing us, that it almost seems odd when one of them actually does thier job, and it's an extra bonus to have one actually be compassionate.

Ernie, I was going to go to the ER, but the arrythmia went away, and my heart rate was in the normal range, but a bit higher then usual----but still normal range. I do have an appointment set with my PCP this wednesday who is also a cardiologist. I want to go over some abnormal blood work that has never been explained to me, and discuss this arrythmia I had. Maybe we can order an echo of my heart to check the pumping order.

I'm hoping this isn't leading to a long POTS crash.

Thanks again for being so kind and supportive.

Katherine, I'm so grateful nothing like this happened when I was in Maryland, and I was able to enjoy my son's wedding. I prayed a lot when I was there. I'm so thrilled, and it is nice to have nice memories without something messing it all up.

I'll think of this when I'm feel down---- Unfortunately I can't go outside in this firgid weather---plus we have about 20 inches of snow on the ground from two different snow storms. I wish I could just go sit on my back porch and listen to the morning doves sing. I'll be glad when they come back.

Maxine :0)

[mkoven]

Hi Maxine,

I know how rotten those erratic beats are. My doctor checked my electrolytes, and while they were okay, did suggest I up my magnesium. Not sure if it's a coincidence or a trend, but the arrhythmias have been improved the last couple days. Though I'm still getting some-- significantly fewer. I am now taking 1200mgs of magnesium glycinate a day, 600 am, 600 pm. Should probably only do it with your doc's blessing, as that's way more magnesium than the rda.

Hope things improve soon!

Michele

[Maxine]

Thanks for your support Mkoven,

When I see my PCP Wednesday, I'll have my electrolites checked, and suggest the magnesium.

I do get those small PVCs and PACs, but I'm not sure what this was, unless it was several in a row.

When it happened I thought it will correct itself like it always does, but it kept going, then it felt like my breath was being sucked out of me. I kept tying to breathe normal----and I think I was, then I got an adrenaline rush, and my heart rate went back to normal.

Can really low BP cause this? I have been feeling so bad with this virus, but even before that I have been feeling crummy, and having a difficult time with OI issues.

The BP did drop really fast today.

Maxine :0)

[cma]

I don't even know how to handle any kind of arrythmias. Every time when my heart is doing something funny I get so scared and especially after that time when I ended up in the ER with severe tachycardia. The heart was beating so hard it seemed it was going to pop out of the chest. Here it just did something funny again, for couple of times the beat was very strong. This is still new to me and I don't know what that is. I am taking beta blockers so maybe it is related with drugs.

I've tried magnesium, but it didn't help. I was taking it with calcium and it seemed that calcium helped more, but only for couple of days.

[Maxine]

CMA, I feel the same way. I never know what to do because the arrhythmias feel so dangerous. This past one on Friday was so scary, and I felt certain I should go to the ER. Then I thought about what usually happens at the ER. I did go there on Christmas day to find out if I had strep----which I did. I haven't been the same since. I have had two more viruses, and one of them having a sore throat again. This pain traveled up to my ear, and all around my neck. I didn't want to go to ER again for a strep test, so I waited until the next day to see if the sore throat went away. At least that part did, but I was so depressed from having the arrhythmia, and almost going to the ER anyway the night before.

I have been stressed, fighting a virus, and having really low BP, and it seems like more rapid blood pooling then usual.

When the arrhythmia happened it felt like my breath was being sucked out of me, and my vision got blurry. When I called Dr. Grubb, and the other doctor called back, he didn't seem to think it was all that serious. I was surprised considering I said my vision got blurry. Like I said previously, he seemed nice, but also like he really didn't care all that much. he basically told me it was up to me if I wanted to go to the ER.

I'm still strugging with severe spine and neck pain beyond my usual, and it's difficult for me to do anything. I did have physical therapy last week, and they used ultra sound and massage. I wonder if the ultra sound made things worse. My instability feels more pronounced, and it's difficult to hold up me head! It's and effort just to sit around. Today we went to do a refi on our house to update our kitchen to make it easier to navigate with my EDS. It needs to be updated anyway, and it's really difficult the way it's set up now. I had a very difficult time trying to sit up in the chair in his office. He was cool about it, and just let me lean over on his desk until the paper work was done. Thankfully, my husband was off today, and I didn't have to worry about driving.

I'm also going to ask my pcp about the best place to have my MRI done. He's really good, and he'll make sure he stays connected with my other doctors.

I really need better doctors locally as far as watching my spine instability. There's no one here, and I have to leave town.

What's really upsetting it that I had another really bad arrhythmia------I just don't need this scary thing on top of my other scary mess. I also want to be there for my brother and sister in law to help in some way, but it's not possible right now. All I can do is visit him.

Maybe when the weather warms up all of this won't seem as bad. I know this is way more then I needed to post, but I am very overwhelmed, and that arrhythmia didn't help this much. This just makes everything seem all the worse.

Maxine :0)