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  1. 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.
  2. 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
  3. 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
  4. 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
  5. Cardiactech, sorry to hear about your syncope episodes. I hope you get things straightened out. Susan
  6. 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
  7. 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
  8. 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
  9. I get it too. Some days better than others. I've had it for years. Ever since before I was diagnosed with POTS. Susan
  10. Thanks for the info FLOP, I will do so! Susan
  11. 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
  12. 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
  13. 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
  14. 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
  15. 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
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