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Everything posted by jrlehnardt

  1. Thanks. Went to a new doctor today. A cardiac electrophysiologist and without me even saying anything within the first 2 mins. He said I should go to toledo or Vanderbilt andwhen I told him how long it took to be seen, he said I should see dr Goodman. He said his last patient he sent to Dr. Grubb took 8 months and i just don't have another year to get worse and go untreated. So now I have to figure insurance out so hopefully I will be able to go soon!
  2. yes, i am in fort gordon, georgia. have had pots for almost 6 years but just diagnosed a year ago. i also have eds but not sure if my pots is really secondary to that as my pots started after a pregnancy and hysterectomy. so i dont know what type of pots i have. i have had the typical symptoms until recently where my symptoms are more like the hyperadrenergic. i have a family doctor that has sent me to so many specialist but when it comes down to it, my pcp is willing to learn and try anything for me whereas i dont get much help from the specialist. i have gotten so bad, even when 6 months ago ididnt think i could get any worse. so i was thinking if i got a lot of the teting done at the mayo clinic and with their advice of what to try that my family dotor could go from there. only problem is m hubby is military and it has been so difficult to see civilians and get referrals. but i think my pcp would be willing to call the mayo and then also let my insurance know at this time that i have to get further testing to get better. i just didnt know if it would be better to have him ask me to got to the az mayo or the mn, or jacksonville, since i am closer to florida, but i just hadnt heard too much about jacksonville being as helpful. and i dont know how insurance would feel about having me go to az mayo if jacksonville is closer?
  3. I know there is a list of doctors tha have been helpful on thesite. but when it really comes down to it from what i have seen, to get real help, you need to go to the mayo clinic in rochester or in az. is that the case? is there other places, like the mayo in jax? i know you talk about dr grubb and goodman, are there other docs to see or mainly just them? and how long does it take to get in with them?
  4. I was just wondering if anyone has been to the autonomic disorders MVP center in Birmingham Alabama and seen any of their doctors? Would you recommend them? Do they do adequate testing? Do they just dx you or do they also treat you? I have pots and I was trying to find a closer place to go. Also does anyone know the wait time to get in?
  5. I would have to look exactly from my tilt ta le test what my BP does, I forgot at this point I believe the top number is low and my bottom number rises slightly. I will have to check. But i do have low bp most of the time as i get lightheaded and dizzy and see dark spots or tunnel vision because of it. I have sinus tachycardia. Ya when I first got pots it usually raised to like 150s 160s but for the last 2 years it has been like this video daily. I don't just get episodes this is all day long. I don't really kow what type of pots I have as I have only gone through a tilt table test. Growing up as a teen I would get lightheaded and dizzy upon standing and couldn't tolerate heat, but didn't have a problem with heart rate until after my 5th pregnancy and had to have a hysterectomy soon after. I woke up from surgery with it. But I also eds. But since i seemed to have symptoms as a teenager and have eds but it also started kind of suddenly after my pregnancy/surgery, so not sure which one. Also just in the last 6 months I started having high norepinephrine levels, sweating, flushing, and high BP as well as my typical low BP, which then seems more like the hyperadregenic . But from my first 4 years of having pots it didn't really fit the hyperadregenic type at all. But it seems as though there is more types and subtypes out there that i didn't know about when I had been dx, so I do need to read about them now since it seems like there is a lot more info on pots then I knew about
  6. Thanks you are in mine as well. Wow I guess having to slow isn't a good thing either, that is alot to go through when that happens. Have they thought about putting like a pace maker or something that to jolt you awake. Maybe you have a heart problem that keeps it too low but then maybe you have high norepinephrine levels that gives you an adrenaline surge. Have they checked your hormone levels? Or maybe it is with the electrical part of our system that isn't working right so it will be both too low and too high. Ya I bet you confuse the doctors. I am sorry you have to deal with that. Yes it is difficult with kids, however my youngest is now almost 6 so they have been used to my health for years and they are getting older so it seems to get a little easier but also more difficult in some ways as they don't get to play outside as much and go do things like kids with healthy parents. But when my pots first started I had just had our 5th and i had 4 kids under the age of 4 and my oldest was almost 8. And I definitely needed a lot of help from family, friends, anyone that could help, lol.
  7. Thanks, I will order so compression stocking now and give them a try. That's amazing that your heart rate goes that low, I wish mine would, I feel like if my heart rate would at least slow down below 80 while I slep I wouldn't be so worn out and maybe have some energy. Yes the only test I have done was a tilt table and normal blood labs to see if i had problems with thyroid, blood sugar, and vitamins or minerals and hormones. I haven't had any of the tests that like the mayo clinic do on pots patients. I am now getting ready to see new doctors. What are the tests, labs, etc that pots patients should have done, so i can ask them to do them??
  8. Forgot to say, I feel like I have run a marathon. That is the best way i have learned to describe it. I do also get jittery at times and shake like tremor like. But my veins have never hurt or collapsed, interesting? Sorry for those of you that have that happen. I do drink 3 litres of propel and increase my salt and i take zofran for nauteousness and take hydrocoodone for pain. But i used to take others and tried others but i just got so much worse, so i am waiting til i feel stronger to try another Med.
  9. Yes mine will go over 200 if I am standing longer than 5 mins. I have never tried ivabradine, I will talk to my new docs about it. I have not really been treated as my family doctor has been the only helpful doctor and willing to learn, so he has tried me on midodrine, florinef, had me increase my salt and fluids but he has sent me to cardio, neuro, and the cardio just want to kepp putting me on beta blocker and the neuro has done nothing and unwilling to learn about pots. My husband is military and the military docs sometimes are worse in my experience, so I am now being referred out to civilians so hopefully I will start being treated soon. When my heart rate is 180+ I do feel out of breath but i am so used to it that I still just keep functioning. Really it is when I stand to quickly and get lightheaded or dizzy that I have a harder time functioning . I do try to sit as quickly as i can so it is only 120-140s when i sit. I used to get worse headaches but with drinking plenty of fluids and not getting dehydrated those are less. Florinef only made my hands and feet colder than they already are and I didn't see any improvement with anything. Beta blocker have dropped my bp too low. I think I have had pots since i was young as I never could tolerate heat and i would always get lightheaded and dizzy upon standing and my legs would always be purple and splotchy when standing. But the heart rate and full onset of pots did not happen till I had a hysterectomy and cystocele after I had my 5th child 6 years ago. After I woke up from the surgery my heart would always race upon standing. I thought I was just recovering slowly from my surgery since i had been on be rest for 3 months prior. Well finally at 8 months post op I just pushed myself to be up out of bed more than in bed. Finally saw a doctor 1.5 into it and after all my labs came back normal except that I had prediabetic blood glucose sugar levels. So after no arythmias and echo showing up because my heart rate would be 60 when I would lay for my echo, doctor decide it was stress because of having 5 kids, lol. So stopped seeing doctors for awhile and just dealt. Well my husband was getting ready to deploy and he wanted me to see doctors to get answers, well only thing lab wise that was wrong was that at 28 I was in menopause, so after months of them not figuring anything out they said it was depression. So again stopped seeing doctors for awhile. And pushed myself to work out 6 days a week which I think helped but also hurt because I was overdoing myself and I didn't know it. I at this point was having major massive headaches daily. Saw physical therapy as my neck was protruding forward and my scapulas were winging out. Still fast heart but just ignored it because I was used to hiding it from people so when i was out of breath I would try to breath really quiet, etc... as no one in my family knew I was stuck in bed at home with massive headaches, muscle pains, and a fast heart rate and lightheadedness except my husband and kids. Well after my husband got home from deployment my body gave in completely. I was in bed 24/7 not cooking, grocery shopping, taking care of my kids, anything, then we had to do a cross country move because of the military which was awful on my body . So started seeing doctors and after finding on the internet pots,eds symptoms that matched me completely I brought it up to my doctor. He agreed andchecked my hr and BP with laying standing and sitting, he thought I had pots, but referred me to a cardiologist . Well after months of fighting and finally complaining to patient advocacy the cardiologist did a tilt table test. His reasoning was that I had sinus tachycardia and he would treat it with beta blocker anyway and that pots really wasn't real. So got my dx about8 months ago. Well my norepinephrine levels have been high for the last 6 months, and my BP that has always been low is now high and low in the same day, like 96/56 and then 147/93. So they can't really put me on a beta blocker as when my BP is low it drops it too low. Since my norepinephrine levels have been high I have had problems with anxiety episodes and seating profusely where I used to never sweat before but the biggest problem is my heart rate that used to go down to 60 when laying never goes below like 80 when sleeping and where when I stand it would be in the 160s it has been 200+ for the last 2 years. Doctors think maybe a rare tumor pheochromocytoma since my norepinephrine levels are high but endocrinologist doesn't think so as it is a "rare" tumor. He say yes I have all the symptoms of this tumor and my levels are elevated but not high enough to diagnose this tumor but to say I don't have it because they r rare is ridiculous. So i am finally getting referred out to see civilian doctors so hopefully I will get more things figured out!! I know long but sorry, but this really is a brief summary, lol.
  10. Here is a link to my video clip of me showing what pots does to my heart from laying down to standing and then slowly walking up stairs and laying back down. Just thought it would be helpful for others. Also if anyone has any tips on lowering heart rate as i have not has success with beta blocker as they lower my BP too low and only lowering heart 10 beats. Also no luck with florinef. I also drink 3 litres of propel a day and increase my salt. Any ideas of any other meds to try or something else, as I am worse than I was in this video ( this was taped probably 6 months ago). http://www.youtube.com/watch?v=I0j3yi33Thc&sns=em
  11. My husband is military and so I have been being seen at an army medical center. Because my cardiologist, neurologist don't know how to treat pots or learn about it they want to refer me out to civilian community. My problem is my insurance doesn't know a Dr. In the area that is knowledgeable in POTS and so they want me to find one and give them a name. I have already looked on the physician list lookups and the closest I found was the mayo clinic in Jacksonville, FL. And i found a cardiologist that has treated a couple pots patients but not much. Does anyone know if there is anyone in the augusta, GA area? Any help would be appreciated, thanks!
  12. I know that pots patients can have norepinephrine/normetanephrine upon standing. But mine have been high just sitting. For those who have tested high on these. My question is; what was your number? Was it just on the high normal range, was it high or was it 2-3x the high range? Mine has consistently been 2-3x the high range, and i have only seen other pots patients, just barely above the high range.
  13. I wouldn't be concerned with the heart rate at all, that is a normal resting heart rate. But with you not feeling very well, I would look into if the beta blocker is dropping your blood pressure too low, as that can make you feel like this. But I wonder if it is also due to your period. Maybe your blood pressure is lower during your period and with the beta blocker it is just a little too low for you. If i were you I would have my BP checked and if that is too low, talk with you doctor about taking a smaller does during your period?.. just some thoughts
  14. Ya, I think I need to stop being so stubborn and go to the er when my body really needs it. I just stay at home and deal with and will be in bed for days while my husband carries me to the bathroom when i have to go, or I crawl there. Sometimes when I am that bad I wish I had a catheter in so i wouldn't have to get up to go to the bathroom. My problem, is that for the last year I am always like this. I may have a good day out of a few weeks, but pretty much it is constantly that fast. The beta blocker didn't work for me and i drink 3 litres of propel daily. I think I will try the salt tabs and see if my stomach can handle it. My stomach doesn't really handle too much unfortunately.
  15. My cardiologist that doesn't care to know anything about pots, put me on metropolol. I ended up in the hospital because it dropped my blood pressure too much ( this was about 3 months ago when my BP was low not high). It really only dropped my heart rate maybe by 10. So not much of a break. I have never tried a benzo. If my doctors don't have any answers I will bring it up to them. Fluids doesn't help unless it is IV saline solution. I drink about 80 ounces of propel a day because it does help with other symptoms, like not as much muscle pain and headaches. There was one time the doctors put me on cymbalta to see if it would help with my pain, headaches. It made me so nauseous I could not eat or drink, so on the fourth day I ended up in the er. Of course I was dehydrated, and my laying down heart rate was 184, which I expected it would be bad since I was dehydrated. After they gave me the 3 rd liter of saline IV fluid my standing heart rate went down to 92. I felt amazing for 2 days. I tried to keep my heart rate low by drinking tons of fluid but it doesn't work. So i am sure it has to do with blood volume. But of course I am limited on what tests Drs can do here. If i could have IV fluid daily, I would feel amazing probably. My family Dr did put me on florinef which helped with lightheadedness, but it doesn't do anything with heart rate for me. But my hands and feet are extremely cold and weird feeling on it, to the point that I have to put my hands and feet in hot water just to get relief. I also have a weird "airy, cold" feeling in my ears while on florinef. So I stopped it. I was just hoping that it is something else besides some rare tumor on top of eds and pots.
  16. I have eds and pots. I do not know what type as my husband is in the army, and the medical center and my doctors say they can't do genetic or research testing. I do not know if i have pots because of my eds or it is just a coincidence. My pots came on after I had a hysterectomy after my last pregnancy 5 years ago. After the delivery my heart rate was fine for 6 weeks, then I had to have a hysterectomy due to uterine prolapse, and from that point on I had a fast heart rate upon standing. I have had the typical eds and pots symptoms. But starting a year or so ago my heart rate won't go back down to a normal rate when sitting or laying. My heart rate is 100+ while I am sleeping and is typically 120-150s sitting and will be 140-200+ upon standing. I have had headaches for years as well. I have always been cold in my hands, feet, nose, bottom. And I never really sweated. Well starting about a year ago when my heart rate would be high while sleeping I started sweating and in the last few, months it has gotten really bad. I have hot flashes, excessive sweating only upper body, my hands and feet still stay cold. Well I started have chest pains more often, and nothing seems to help or make it worse, it just happens. Well in the last month my blood pressure is now high consistently. I am skinny and don't have any other health problems. I don't drink alcohol or caffeine and I do not smoke. I know standing norepinephrine levels can be high with pots, but my sitting norepinephrine levels are high, normal is 100-700, mine was 1107. The family doctor is thinking a pheochromocytoma, but I have had a CT of my adrenal hands came back clear, I have had an mibg scan, came back clear as well. My endocrinologist, sayds I have all the symptoms of an extra adrenal pheochromocytoma, but doesn't think I have it as it is rare. He is doing new blood work to seei and possibly 24 hr urine to check my norepinephrine levels again. If it isn't a pheo, my doctors have no idea what it is. I am not taking meds, as i had to stop for my mibg scan. I know with a pheo people typically have "episodes" where their heart races, sweats, headache and that is when the norepinephrine is being released excessively. My situation is that my heart is always racing. Yes i do have episodes where it is worse, but i never have a normal heart rate anymore. My question is has anyone had this or knows what it might be?
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