goldicedance Posted May 25, 2004 Report Share Posted May 25, 2004 It's me again! The sinus ablation caused many problems in its own way. First, I developed bradycardia in addition to tachycardia. A pacemaker was the only solution for the bradycardia. I then got these other strange beats--junctional tachycardia. I tried living with that for a year or so by adjusting beta blockers, etc. Finally, I had an AV node ablation which stopped the junctional tachycardia, and then became 100% paced and dependent on the pacemaker.When my symptoms are bad, I still get these strange beats because my autonomic nervous system is telling my heart to beat faster but it just can't. My pacer is programmed to not exceed 140 beats/minute. However, once my HR goes to about 90, my Heart rthym goes bonkers--thus confirming that POTS is well and alive.Florinef was definitely the trigger for migraines even at a low dose. Midodrine gave me the goose bumps/itchies/chills but I could live with that, provided there wasn't a better alternative.I can't remember the dose of Florinef but it was low. I know that I started by splitting the pill so I only took half. As I had POTS with HBP, florinef sent the bp over the roof. Midodrine--I started 1 pill (5 mg) every 4 hours and then worked by way up to 10 mg (I think those are the sizes--I always get confused when talking about mg). As Nina says, reactions to meds are strictly individual. As my wise old doctor once said, everyone reacts differently to meds and that you can experience some effects that the drug company does not include.Have you tried Neurontin? I still take that along with Octreotide. I am taking 3600 mg of Neurontin and it does well in controlling migraines and I suppose helping with POTs.Have you had a clonidine challenge test to see whether you would be a candidate for clonidine? At one time, clonidine was a first line approach to treating POTS.Keep exploring! And, good luck. And, most importantly, feel better! Quote Link to comment Share on other sites More sharing options...
danelle Posted May 25, 2004 Report Share Posted May 25, 2004 Karen,I take atenolol as well. Usually 50mg a day sometimes a little more depending on my sx. If you don't mind my asking, which DR told you that only sinus tachy was related to POTS and not the other rhythms? THat is given me some added concern. I am waiting for a call from Dr Grubb's office today and I will ask them again about what is my understanding and I will let you know. Quote Link to comment Share on other sites More sharing options...
Karen M. Posted May 25, 2004 Author Report Share Posted May 25, 2004 danelleEvery single cardio doc I've seen over the last 11 years has defined POTS this way. From the doc's in San Diego to the one's here in Tucson.Karen M.goldicedanceHow can a pacemaker slow your HR down? I've never taken or even heard of the meds you mentioned. I look in to them.Karen M.khudsonwvThat sounds like it to me. You have POTS, but you in addition have other abnormal beats. You have two different problems, maybe more? Let me know how the muscle thing goes?Karen M. Quote Link to comment Share on other sites More sharing options...
Guest tearose Posted May 25, 2004 Report Share Posted May 25, 2004 Hi all, I just wanted to add to the info regarding POTS and racing heartrate while sleeping...Recently discovered in my own sleep study too...when you have the type of dysautonomia that makes your blood pool...and then your blood pressure drop, your heart will race to compensate for the lack of oxygen, you can be standing or laying down!!! When the brain needs oxygen it will dump major norepinepherine and force your heart to race, you may even be sleeping when this happens....this is why I do not get restorative sleep and have hundreds of sleep arousals. This is also a major reason we get brain fog!Oh, and as for these symptoms being secondary to medication...not in my case. I do not take any medication, I do all those behavior modifications like fluid and major compression from my toes to my ribs, heart rate monitor..Regards, tearose Quote Link to comment Share on other sites More sharing options...
Merrill Posted May 25, 2004 Report Share Posted May 25, 2004 Hi, Tearose! I've missed you!I'm having a sleep study of my own in a couple weeks; I think I've developed sleep apnea, but want to know for sure. I also am aware of rapid heart rates during the night, because I too wake frequently to the point of consciousness and feel the fast pace of it. (But my holter showed a drop of hr during the night to 67 bpm, so I know it does go lower sometimes, and so I know it's not IST.) I always figured the racing during the night had something to do with the extraordinarily vivid dreams I have--so vivid that I have a hard time distinguishing between dream and reality...Were you diagnosed with sleep apnea too? (There, the blood oxygen level drops low b/c you've stopped breathing--the brain triggers an arousal and message to breathe again.) All very interesting! Thanks for posting,Merrill Quote Link to comment Share on other sites More sharing options...
Michelle Sawicki Posted May 25, 2004 Report Share Posted May 25, 2004 Many patients have reported symptoms while lying down. See:http://dinet.ipbhost.com/index.php?showtopic=182&hl=Here is a quote taken from eMedicine's "Orthostatic Intolerance: An Overview" article:The term orthostasis literally means standing upright. Orthostatic intolerance may be defined as "the development of symptoms during upright standing relieved by recumbency." While use of a term such as orthostatic intolerance logically implies the presence of illness or abnormalities when upright, this implication strays from the whole truth. Typically, blood flow and blood pressure (BP) regulation also are abnormal while supine or sitting, but these abnormalities may not be as apparent and may require orthostatic stress to become evident. See: http://www.emedicine.com/ped/topic2860.htm for the full text article.Michelle Quote Link to comment Share on other sites More sharing options...
goldicedance Posted May 25, 2004 Report Share Posted May 25, 2004 The pacemaker was not put in to slow the heart rate because it cannot do that. The pacemaker was put in to alleve the bradycardia. However, the sinus node ablation was not complete so my sinus node sometimes goes off on its own and tries to accelerate.Hope that this is useful to you.Also, you may wish to check out the NDRF website and read the NIH study about POTS. It provides good information in user-friendly language and suggests some treatment possibilities.Good luck in your search...Lois Quote Link to comment Share on other sites More sharing options...
khudsonwv Posted May 25, 2004 Report Share Posted May 25, 2004 Goldicedance - thank you so much for your entries - it is so great hearing from someone else who is dealing with a pacemaker and POTS. Although i wouldn't wish this on my worst enemy - it is a comfort to have someone who truly understands the difficulties this causes.. thanks again!!! Quote Link to comment Share on other sites More sharing options...
Guest tearose Posted May 26, 2004 Report Share Posted May 26, 2004 I'm glad to see that you two with pacers found each other! I hope your will continue to share with us "non-pacers" because we can learn from you. Hey, we are "wired" too, we just don't have the backup battery you have!Michelle, that is an excellent article, I'll have to read it tomorrow when my brain is more awake. Thank you.Merrill, sorry to have been out of the loop, I'll post more soon. Anyway, no I do not have sleep apnea. I was surprised too. I'm still waiting on Mayo Clinic Rochester to send back their opinion on my results, however the sleep center I went to is well regarded and the doctor who studied my results sees clear evidence of an "autonomic nervous system problem". Take care, and thanks for the welcome back. (I just want you to know that even though I've been busy with assorted stuff I keep picturing you with a little babe in arms and I am enjoying myself at your baby shower!) Hugs, tearose Quote Link to comment Share on other sites More sharing options...
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