sfrnklin

cardiactech, I don't know if you remember, but I have a friend I work with in the hospital who is an RT. She has a heart pacer and a gastric pacer. She has NCS and POTS also like me. She is far more advanced with her disease though than I am. She is very knowledgeable and gave me lots of info and MD referrals when I was first diagnosed with this terrible stuff. She is actually the person who hooked me up with Dr. Grubb. I don't know if she transcutaneously paced before actually getting a permanent one. I will ask her next time I work this coming week. If you want, I can get her email address and hook you guys up. She is an absolute wealth of knowledge and as far as I know, she does not get on any of these sites. She pretty much keeps to herself. Susan F.

Goodness girlie, I hope this works for you, If it does not and you need the pacer, let me know. I work with a girl who has one. She has POTS and has two pacers ( a heart one and a gastro one). She is a Respiratory Therapist and huge wealth of knowledge about all this. She told me what I had before I knew I had it and put me in touch with Dr Grubb. I hope it works , though and you start eating big...Peanut butter will put some meat on those bones (hehehe). Susan

I am a patient of Dr. Grubb's and he does both testing and managing meds as well as any procedures you may need done such as cardiac cath, ablation, etc. I could not tell from your post if you are already an established patient of his or a new patient. If you are already an established patient, you can get in quick (like within the week) to see his NP, Beverly Karabin. If you are a new patient, you can wait up to 9 mos. or longer to see him. A trick you can do as new patient, is to call every week to see if there is a new patient cancellation appointment available. They will look for you all they way up till your scheduled appointment. I did that and got in sooner. People get sicker or tired of waiting and cancel out. I actually got in 3 mos sooner, so I recommend doing this, and they don't mind! Good luck and I hope you start feeling better soon. Susan

Cardiactech, I personally would ask for an event monitor. You know my story about the two nasty arrythmias I had ablated. They were only caught after wearing two different event monitors for over a month. The 24-48 hr holter monitor was not long enough because I was going in and out and not on a daily basis. If you are indeed having pauses, I'm an ICU nurse, your pauses may only happen every couple of days, or only during stressful periods, or only at work when your up on your feet a lot, etc. There may be no rhyme or reason to them. Definitely tell your Doc. Good luck. Susan

Cardiactech, sorry to hear about your syncope episodes. I hope you get things straightened out. Susan

Linda Joy, I don't know if this helps, but I have POTS and had documented A Flutter that I was going in and out of that was causing terrible symptoms. Dr. Grubb did an EP Study and Ablation on me and I DID NOT go into heart block or have any complications from what so ever. Matter of fact, it made me feel 95% better with my POTS symptoms. Before ablation, I was contemplating going on disability and now I'm working 12- hour shifts again at work. I was concerned about what you read about ablations and POTS and Dr. Grubb told me that you don't want to do an ablation to get rid of the SA node like they used to years ago cause they found that it made POTS patients worse and they developed heart block and had to have pacemakers placed. Mine was a different think altogether and he recommended it 100% and said I would definitely befefit from it and he was right. I would definitely see an EP doctor and see what they have to say. Maybe consult Dr. Grubb who is an EP and very knowledgable with POTS patients. Good luck with everything. If you have any questions or I can answer any questions about an ablation, let me know. I would be happy to email you. Susan

I've had that many times before. Interesting tidbits Doctorquest. I have a Vit B12 def. and take monthly shots. I also have mild neuropathy related to dysautonomia like most do. Thanks for the info. Susan

If you have'nt had a halter monitor I would ask for one. Maybe some sort of arrythmia is going on that you don't know about. I had two funky ones that I had to have ablated that caused me a lot of SOB and exhaustion like that and once they zapped them, my SOB got a whole lot better. Susan

I get it too. Some days better than others. I've had it for years. Ever since before I was diagnosed with POTS. Susan

Thanks for the info FLOP, I will do so! Susan

Thanks OLL and Tearose, I will keep your advice in mind. I go for my MRI this evening and some blood work for Lupus. Susan

Hi, I'm not really new here. I read daily and answer postings occassionally. I have POTS and am doing much better with hardly any flareups since my ablation in Oct '06. by Dr. G in Ohio. BUT, I was recently told at my yearly eye appointment that I have a pale optic nerve, which is new from last year and that I should see my family physician so he can order a brain scan (MRI). I did and he said I should get one because it could mean I have Multiple Sclerosis, Lupus, or a brain tumor. Anyone ever heard of this or have this due to a pale optic nerve? And I really wonder if it is tied in with all this autonomic stuff!!!!!!!! Susan

Hi, I don't know much about Octreotide's use for POTS. I am an ICU RN and we only use it as an IV drip for SEVERE GI bleeders. I only recently heard of dr.s prescribing this for a pt on another site to a POTS pt and was quite confused. I myself would be afraid to take this drug, but that is just my opinion. I have NEVER seen it used in the hospital setting for anything else. These pt's are usually very bad off and near death (chronic GI bleeders). Good luck. Susan

Corey, Isn't the guru great? He gave me the same spill when I saw him back in Sept. I also scored 8 of 9 on the Beighton. I also have POTS/NCS. Cardiactech, Good luck with your journey on this subject. We have PM's each other before and you know what I think. We are very similar. You probably have it. How severe, I do not know. I hope you get to see the guru, Dr. Grubb and he can answer all your questions. Susan

Primetime, So you do have arrythmias also. What are they and are they documented by EKG or some sort of monitor you wore? Mine were A Flutter and AV Node Re-entry Tachycardia. That is why an ablation was necessary for me. It did help me 100% and I would do it again. Without knowing more, I cannot understand why they would do a cardiac cath and not an EP study for a looky see. But I do encourage you to sit down and talk more in depth with that dr. and let him know your feelings, doubts, etc. about this procedure he is wanting you to have. If he is good and concerned about you, he will have NO problem doing so. Good luck !!!!!! Susan

Primetime, I too have cardiac issues along with my POTS. Ultimately I had an ablation to correct two nasty arrythmias I had (contrary to the negative articles against ablations for POTS patients). Dr. Grubb did mine due to his overwhelming belief it would help me and it did. It got rid of my nasty POTSY symptoms that bothered me the most and kept me from enjoying life the most. If I were you, I would ask that dr. to further explain to me in detail and a language I can understand why he feels I need a cath and what it is he is looking for and what he plans do if he finds something. You can decide from there what you wish to do. It is your body. I am a cardiac ICU nurse. I see lots of caths done everyday I work. There are risks involved, but I see very few go wrong unless the pt is very old or has had a massive MI. Good luck on your decision and outcome. Susan

Cardiactech, Don't you work in the healthcare field? I think I remember that or something. I could be wrong. I work in the healthcare field as a nurse and my co-workers act the same way and it makes me sick. For one thing, you would think they would have a little more sympathy/compassion considering they work with sick people all day and know that it really exists and I'm not some crazy person. I totally understand your frustration!!!!!!!!!!!! That person would be the same way if they were in your shoes. You know the old saying about "don't judge a person until you have walked a mile in their shoes". Those kind of people should think about that. Susan

I have low B12 level and my doctor recommended the shot. I have been on it for over a year now. I wasn't sure if it helped or not until I skipped a month and boy could I tell. I wanted to sleep all the time and felt much more fatigued than normal. So I guess for me, it helps. Susan

Bri Bri, You should talk your cardiologist into setting you up with a 24 hr halter monitor or better yet a cardionet or king of hearts monitor. They are more long term (like a month). Arrythmias are hard to catch some times cause they don't happen every day. And, not all arrythmias that POTS pts have are begnign and nothing to worry about. Some can be quite dangerous. I had fib-flutter and AV node re-entry tachycardia. The first one can cause blood clots to form and can cause heart attack or stroke. I had an ablation in October to take care of mine and I feel much better now. I don't get all that flip flopping sensations and SOB that I used to. I still have POTS though. But I have a couple of less nasty symptoms to deal with now. Good luck, Susan

I have POTS and I see Dr. Grubb. I have high HR's upon standing and a significant drop in BP according to him but I DO NOT faint. I do have some crummy symptoms but a lot less since he did an ablation on me. Mostly just some fatigue if I work too much, heat/cold intolerance, exercise intolerance, head aches, stomach aches, and slow bowels. The SOB, heart palpitations, chest pain, and anxiety went away after the ablation. Susan

I am assuming some of these drugs are to help keep your HR down? I failed Toprol and other such drugs many times also. They would work for a while and then I would have breakthrough Tachy. I am now on Coreg 12.5 mg BID and it has been working for over a year. I hope that was what you were talking about. Good luck. Susan

Niki, A lot of what you are describing sounded a lot like me with my POTS. None of my cardiac test was abnormal. My stress test was fine, my echo's were fine, My Tilt was just tachycardia, etc. The 24 hr halters (and I wore many) didn't really show anything. And to beat all that, I had to wear several long-term monitors before they started catching stuff (a Cardionet and a King of Hearts monitor). I had flip flopping of the heart that felt like someone had my heart on a wand and was making it turn every which way but loose inside my chest, I made multiple trips to the ER with chest pain that bowed me over (all blood work neg for heart attack each time...they started labeling me as a pain seeker and I am an RN), I felt like my heart would stop and it would wake me up in the nite, I had extreme SOB just climbing my stairs at home, etc. To make a long story short, they finally caught an arrythmia called Fib/Flutter for a short period of time on the King of Hearts monitor (I converted on my own). Another time at work I went into that arrythmia again and had to be hospitalized a few days and converted again on my own. I was sent to Dr. Grubb because noone in my area would do an EP/ablation on me. It was thought to be too risky since I had POTS (bologny)!!!!! Dr. Grubb did an EP, ablated that nasty arrythmia along with another one he found I new nothing about and I feel 100% better. I still have POTS of course, but my heart no longer does those weird things and I no longer have CP or SOB as bad. I still have tachy at times which is normal for a POTS patient, but it is Sinus Tachycardia and it is controlled and doesn't even really bother me that bad. Good luck and ask your doctor for a more long term monitor. They can be a real pain cause you have to wear most of them for a least a month or more, but hopefully something will show. Susan

Lina, I don't know for sure, but since being diagnosed with POTS in 2002 I have lost like 35 lbs and could not gain it back if my life depended on it. I have the hardest time trying to. My family is on me all the time about gaining at least a little of it back and I can't and I do eat well most of the time unless my stomach is bothering me but I make up for it when it's not. My regular family doctor gives me a hard time about it to and put me on those nasty Boost drinks. Dr. Grubb doesn't seemed to be concerned about it, so I don't fret over anymore either. I take a BB twice daily but it doesn't seem to put weight on me. Sincerely, Susan

Hi Stace, I am so glad you had such a great apptmnt. Everyone in his office is as TERRIFIC as he is. I also see Dr. Grubb and like you I also have hypermobility. My sister and my daughter also have hypermobility, but no dysautonomia for them and hopefully never cause we both know how horrible it is. Don't be surprised if you don't get a book in the mail from Dr. Grubb in a few days. He sent me one called "When Bad Things Happen To Good People". If he does, I highly recommend reading it. He has been sending it lately to new patients. Maybe I'll see you in his office sometime. Good luck with your plan of care with him. He is TERRIFIC!!!!!! Susan

CDJ, I am so sorry this happened to you. It is the same story over and over from different people it seems that go to these big hospitals. If I were you, I would get a referral from my doctor and go to Dr. Grubb. He is one of the leading Dr.'s in dysautonomia. I love him. He helped me when no one else could. He gave me all the answers to all my questions and more... This is just my opinion. I will pray for you. I hope the best for you in your quest for dx and answers to your questions. I know how you feel. I was in your same position last year till I found the right dr. I hope you do too. Susan