I am really struggling with making the right decisions for myself right now. I was recently diagnosed with POTS. I had a positive tilt table test. The cardiologist told me I have non-sustained ventricular tachycardia, and inappropriate sinus tachycardia (hence the POTS). When I stand up my heart races up 30-40 beats and if I’m standing for too long I start to sweat, feel dizzy, basically a big head rush times a thousand. So after getting 3 total opinions (2 were EP’s) two agree that I need an EP study to rule out anything more serious, and if an ablation is necessary or possible, that will be done as well. He told me I wold likely be on meds for the POTS indefinitely (metropolol) but it’s possible he can ablate for the non-sustained tachycardia. My heart has been documented on the monitor at 186 bpm for a total of 12 beats, and its happened a few times. I have this catheterization scheduled for Nov 7th and I’m honestly torn as to whether or not I should do it. I’m scared, even though its pretty routine. One cardiologist was adamant I do it, and the guy that is actually doing the procedure was ok to medicate and wait, or go ahead, depending on how I felt. I just feel like I need to rule out anything more ominous going on because I have 3 boys to take care of.
Meanwhile, tomorrow, I have a cine MRI. Mayfield clinic suggested that there was no need for surgical intervention at this time based on my MRI’s (5 mm drop) but recommended a full neuro work up to address my symptoms, namely the sudden tachycardia. So, I have this MRI tomorrow and I’m hoping I can get some answers. Part of me hopes it will tell me something that will solidify my decision to have/not have the EP study, but then another part of me feels like if there is a flow issue, that would be more serious than an EP study.
All of this is scary and just truly so unbelievable. A year ago I felt fine and had no indication anything was wrong and now everything just feels a mess.
Sleepbree,
I’m so sorry you are going through all this. I can relate to where you are with trying to deal with life altering symptoms and just the shock of dealing with multiple new diagnosises. I, too, became symptomatic just over a year ago, due to a car accident, and then had a decompression craniectomy in January. I’m still I’m shock over how different I am compared to a year ago. The surgery did help my severe headaches and some of the other symptoms, but I’m still left with a few issues. I went through Mayfield Clinic also, and they based the need for surgery on the results of the Cine MRI and my rapidly worsening symptoms. With regards to your heart issues, I agree with you in that you feel like you should rule out anything serious. Having runs of vtach is not a good thing! You certainly don’t want to mess around with that. Plus, it’s possible that they could find something that could be fixed and relieve some of your heart related symptoms. It would also be good to know what is going on with your heart in case you need to have surgery for the Chiari.
Anyway, just my thoughts. I hope you are able to make the best decision for yourself and are able to find some answers and the right help for yourself. This is a great place to find support while you are going through this, too
Take care!
Hi SleepBree I was diagnosed with Chiari just this year and I’ve lived all my life with a heart condition called multi focal atrial tachycardia not realizing the correlation between the two anyhow I’m still looking into why they never caught the Chiari and how the heart is affected by it. You have nothing to worry about the EP study. I am now 44 years old but at the age of 36 I collapsed when I went to stand to go to the bathroom, long story short, my heart rate was at 280 and it dropped to 50 they don’t know how I made it alive to the ER. Anyhow I had a heart cath done and then they realized it was an EP study is what I needed. Just ask for some meds to help you relax during the study they try to keep you awake it’s really not a big deal and if they can do an ablation it’s a blessing then for you. They could not do an ablation for me because I have a rare situation where I have hundreds of signals. They tried to put me on a few beta blockers but they made me feel lightheaded and lowered my blood pressure. I take Atenolol as needed but I’ve been off it for two years now. I just monitor what I eat (No fried foods, low starch) and for example MSG is very bad for Arrhythmias, but I do have my one cup of coffee every morning for a boost. Anyhow if you have any questions about arrhythmias Id be more than happy to share my experience with you however Chiari is a whole new ballgame for me. Get your EP study done you have nothing to lose it’s a one day quik procedure and they monitor you overnight at the hospital and apply pressure to the area just like a heart cath. If they could do an ablation during the EP study, lucky you. I went to Dr. Pinski at Cleveland Clinic in Florida. He was excellent & one of the top ones.
All the best to you and God bless you!
Hey my son is Alec....He has had all of these symptoms for the last 3 years. They diagnosed him with Pots, Fibro and the list goes on. His Chiari is 13mm we were to scared to do the surgery so we opted for a complete lifestyle change. He detoxed for months ( sauna, foot baths to pull out the toxins and soaked in a bath tub daily with Epson salt) We eat only organic, I juice daily, he drinks a ton of water and he is a 100% BETTER! Our food/environment is so TOXIC causing inflammation which causes the problems. It might sound crazy but I know it's true. He spent the night at a friends house the other night and I thought what is he going to eat. Well he had crap ( chips and etc) and felt horrible. There is no magic surgery or pill. Now he is on top of the world 11racing.com is his website:) I wish you well!!
Hi Sleepbre. It’s so crazy I came across your discussion. My daughter was just released from the hospital. In three years , she has had two decompression’s and a shunt surgery along with three shunt revisions. She left the hospital with the new diagnosis of POTS! But with my daughter, the cardio wants to tell us it has nothing to do with the heart. I personally feel that is crazy , but the cardio just wants to prescribe my daughter a steroid to control her high heart rate and falling blood pressure. How could the heart doc say that this is not a cardio issue? Is all I could think. Nobody had an answer as to why my daughter had this. But tell me if this makes sense. When you research pots, it talks about how when you have pots, your cerebral blood flow is restricted. Well my daughter has chiari malformation still after 2 decompressions. It is now to her c-2. Well if your cerebellar tonsils are herniated, wouldn’t that make sense that your cerebral blood flow would be restricted? It just makes sense unless I’m misunderstanding. I feel this could be the answer. her neurosurdeon did make sense. when we asked him about this, he said so many people get very sick when they have chiari. and it can very well be the chiari. but after people link something with chiari, they stop searching. he feels we need to continue to search so we can rule out everything. he explained it like this. chiari is like fybromyalgia of the brain. it causes so many illnesses. but lets search everything first. and i agree. My daughter has had surgery after surgery for these low pressure headaches. This last time, they discovered what her BP and Heart rate were doing. My neurosurgeon called in cardio. Cardio insisted this wasn’t a cardio issue. I threw a fit. I was just At a point where I wanted answers! My daughter wasn’t getting better and we were about to do a seventh surgery to place a valve on her shunt to now slow it down to help stop these crippling headaches. But I was so angry that cardio just wouldn’t rule things out before I have my daughter sliced up again. She at the time had a shunt that was placed and drained into her pleural space outside of the left lung. This was the shunt that they were going to place a valve on. But neurosurgery and myself wanted to be positive that this was what was causing her headaches. So the cardio finally decided that they would basically do an echocardiogram of the heart since she hadn’t had one before and also to shut me up. Well to their surprise, they saw something that they have never seen. My daughter had so much fluid that wasn’t seen on an X-ray, in her pleural space that had actually moved into her heart space and was filling the sack in front of the heart so much that it was actually pushing her heart to the right. So much that it was squeezing her heart and a valve shut. So now instead of placing a control valve on her shunt, her neuro had to completely move the shunt to drain in her abdomen. She was fixed as far as her heart, but her pots still remains. Cardio says this isn’t a cardio issue, and neuro insist that cardio looks deeper. But I did read about the chiari and cerebral blood flow as well and to me, it makes sense! You are not alone! I am completely confused as well! Nobody has a direct answer as my 11 year old just dreams of being a kid! If any surgeries are considered, please make absolutely sure that doctors have Definate answers. My daughter has had 7 surgeries and each time gets worse, not better. On another note, if you have doctors willing to run tests… Especially coming from my point of view where doctors say there is no test to figure out why my daughter has pots, take advantage of that and let them search for answers. My daughter is in so much pain with headaches and dizziness. She basically has to lay back all day just to have some kind of comfort. She has home hospital teaching and has to lay back just to do an hour of school work.Please do all you can to find the source to your illness. Thanks for listening, God Bless!!
Brenda my heart & prayers go out to you. I was told by my EP dr that steroids affect the heart rate and promote arrythmias. In fact, anytime Ive had any type of steroid injection or med, its made my arrythmias pop up out of no where then it takes a week or so to get regulated. Anyone with a heart problem needs to watch what they eat, drink and cautious with all meds. Ive had some scary experiences when given certain meds - bad side effects.
Anyway, Im getting ready to visit my EP Dr after 2 years to let him know I have chiari. Lets see what he says to me.
Brenda I cannot imagine all of the stress and heartache involved with your situation. You are right, I should be grateful to have doctors willing to get to the bottom of this. I think I’m adjusting to having a sort of “new reality” with all of these appointments and all the speculations both from the doctors and myself. It’d be much easier to have some concise answers and have a plan to handle my issues, but it’s a process getting there apparently. It’s good to have the support of people who understand chiari and pots. This site is a great resource.
Jozy, thank you for prayers!i took my daughter off the steroids. She was on them for one week with already, many side affects. She is post op 9 days. It’s very hard because cardio says its not a cardio issue, and neuro feels it is. So they just keep going back and forth with no results…no answers. But I cannot just stick my daughter on steroids to mask a problem when we don’t even know where the problem comes from. Is it chiari, is it syringomyelia, is it her heart? Nobody has an answer. My daughter also has a high cortisol level. Endocrin isn’t too concerned of that either. But from what I studied, you shoul not take a steroid with hypercortisolism as well. I feel Sleepbrees frustration. How do you ever know where to go, when you need answers to tell you where to go first. The unknown is a killer. God bless! I hope your EP doc has good in site for Chiari!
Jozy said:
Brenda my heart & prayers go out to you. I was told by my EP dr that steroids affect the heart rate and promote arrythmias. In fact, anytime Ive had any type of steroid injection or med, its made my arrythmias pop up out of no where then it takes a week or so to get regulated. Anyone with a heart problem needs to watch what they eat, drink and cautious with all meds. Ive had some scary experiences when given certain meds - bad side effects.
Anyway, Im getting ready to visit my EP Dr after 2 years to let him know I have chiari. Lets see what he says to me.
Yes, this support group is awesome! I think sometimes you almost can feel as if your just going nuts! Why can’t these things just be cut n dry! I hope and pray that you will get concrete answers to all of this. Stay strong, and don’t give in to things that you know aren’t accurate. God bless!
Sleepbree said:
Brenda I cannot imagine all of the stress and heartache involved with your situation. You are right, I should be grateful to have doctors willing to get to the bottom of this. I think I’m adjusting to having a sort of “new reality” with all of these appointments and all the speculations both from the doctors and myself. It’d be much easier to have some concise answers and have a plan to handle my issues, but it’s a process getting there apparently. It’s good to have the support of people who understand chiari and pots. This site is a great resource.