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blizzard2014

If only I was on the TTT today lol

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Today POTS was in full attack mode. I went to the store and stood up for 1 hour cooking some pasta sauce. My HR was bouncing back and forth between 130 and 133 the entire time. I could feel the blood pounding in my neck the entire time. I was getting dizzy but fighting it. I lasted for the hour and then had to sit my behind back down. My sitting HR is currently 90 (still high) but it is jumping 40 points on standing and staying high the entire time. If I didn't believe I hat POTS, I would be thinking this is a heart attack. I kept showing the pulse ox to a family member and asked them if I was running a marathon or lifting weights. They said; no, you aren't. Then I asked them why is my HR so high and they said it's because I'm out of shape. So, I asked said family member to stand up and I put the pulse ox on them and it read 70. I asked them why their HR is not high when all this person does is work in an office and spend the remainder of the time sitting on the couch lol. No explanation. That ended the hypochondriac discussion. They had to admit that they didn't know what was going on and that they could offer no viable explanation.

I feel so beat up from the shopping and the cooking now like I did run a marathon. Maybe it is because my body thinks it did actually run a marathon with exercise level HR for over an hour. This does not give me confidence for when I go back to work soon after the surgeon releases me back to full time. I thought things might get better and now I'm getting dizzy and faint just sitting here typing. I'm sorry for all of the constant posting and for beating this dead horse every couple of days. I'm just frustrated and no one around me understands what this actually feels like. I might email my doc again and ask him if it is normal for HR to be 133 for over an hour standing. He will give me some remark like "you were cooking; stirring a sauce takes an enormous amount of cardiovascular effort. Your HR was completely normal. It wouldn't be so bad if I didn't feel it happening. I feel the blood pumping in my neck/ears and then the dizziness; and every time I check my HR, it is whacking out. I usually don't  get really dizzy and forced to sit down until my HR is in the 140's. That's when I feel short of breath and have to absolutely stop whatever I'm doing and sit down for a while. I know some of you all said that you are on the floor with a HR of 120. My body fights some of this stuff, but how much of a beating can the body take before it really gives out. Until that happens, I will be fighting this monster as hard as I can. 

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3 minutes ago, StayAtHomeMom said:

It sounds like you may need to find a new doctor. 

I do. But am on Medicaid and it is hard to find a good doc. I have been looking and looking. I would even pay a few hundred dollars to see a decent doc. But this episode just hit and now is calming down and my BP is normal. So, who knows. I can never predict when this will happen again. I know for sure though that if I tried to exercise, I could probably force one of these episodes on. 

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Is that normal for an attack to just come on out of the blue and now be completely gone? The high HR is gone now and there is very little change between the sitting HR and the standing one, although both are now close to 100. That was a very weird occurrence. 

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Dear @blizzard2014 - you really need to be better controlled with your meds. You have mentioned before that you titrate your meds rather take one consistent dose. In POTS this is not always a good idea since we are seeking stability. I take my meds faithfully every day, no matter what, and only if I am in a flare or my BP runs high despite my meds and usual routine do we increase my beta blocker for a day or so. My BP runs low and high, so it would not be smart to keep changing the dosage. Your BP abd HR have been so fluctuating that it mostlikely would help to stay on one daily dose of lisinopril and clonidine ( these are your meds, right? ) and only increase one of them if you are having unusually high BP that does not come down with rest. What doea your doc say about your meds - does he want you to "play with them" or does he recommend a regular dosing schedule? -- I so hope you will feel better soon!

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11 hours ago, blizzard2014 said:

I do. But am on Medicaid and it is hard to find a good doc. I have been looking and looking. I would even pay a few hundred dollars to see a decent doc. But this episode just hit and now is calming down and my BP is normal. So, who knows. I can never predict when this will happen again. I know for sure though that if I tried to exercise, I could probably force one of these episodes on. 

I am on Medicaid and I had to wait 6 months for my specialist but I found good doctors that were willing to learn and was diagnosised before I seen the specialist. 

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10 hours ago, Pistol said:

Dear @blizzard2014 - you really need to be better controlled with your meds. You have mentioned before that you titrate your meds rather take one consistent dose. In POTS this is not always a good idea since we are seeking stability. I take my meds faithfully every day, no matter what, and only if I am in a flare or my BP runs high despite my meds and usual routine do we increase my beta blocker for a day or so. My BP runs low and high, so it would not be smart to keep changing the dosage. Your BP abd HR have been so fluctuating that it mostlikely would help to stay on one daily dose of lisinopril and clonidine ( these are your meds, right? ) and only increase one of them if you are having unusually high BP that does not come down with rest. What doea your doc say about your meds - does he want you to "play with them" or does he recommend a regular dosing schedule? -- I so hope you will feel better soon!

Pistol, my doc still thinks all I have is excitable "or liable" blood pressure. He gave me all of the BP meds and told me not to go overboard with them and kill myself. He's not so convinced I actually need all of the meds he is prescribing. He struggles to grasp my condition but pacifies me by giving me the meds. I'm currently looking for the best cardiologist in my area and gonna pay cash to see him and get some real answers. Blood clots can also cause dramatic increases in HR and it could also be that I'm still throwing clots while on blood thinners. It could also be that I have chronic blood clots in the lungs that keep getting missed on scans also contributing to all of this. For a while I just shut down because I was seeing doc after doc and getting the same answers. I stopped trying. But I will seek a good heart doc and then see the university of Irvine for some autonomic testing. I will begin calling this coming Monday and see if I can get some answers. You're right about keeping one dose of meds the same. I just panicked when my BP was 88/65, because I read hypo profusion to the kidney's can cause damage. Today I'm still hitting 111/100 standing even on the Lisinopril. If it continues, I will up the dose again. But what's scaring me is the consistently high sitting HR and I had a 30 second bout with heart palpitations yesterday night that scared me to death. 

My last EKG a few weeks ago said to consider left atrial enlargement, and numerous before them were positive for meeting the voltage diagnostic criteria for left ventricular enlargement. Left atrial enlargement is an early consequence of hypertensive heart disease. I also have the confirmed moderately enlarged right heart. One doc suspects it's due to pulmonary hypertension and that the day my pulmonary artery pressures were measured, I was having a good day and they do not accurately reflect my real numbers. Sometimes you can show normal numbers at rest, but they jump really high when you are walking around. So, a good heart doc is needed before the autonomic doc as this can all be heart related and not necessarily POTS. I just hate having to max out more of my credit cards looking for answers. I have almost 3 k in debt and out of that 3k, I only spent 300 on myself for clothes. The rest went for medical devices, medications, and medical related items. 

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8 hours ago, StayAtHomeMom said:

I am on Medicaid and I had to wait 6 months for my specialist but I found good doctors that were willing to learn and was diagnosised before I seen the specialist. 

I'm going to try again, and if not then I will pay cash for a good doc to see me. There was only one good doc I saw in 2014 who advised me to keep my INR above a 3.0. An oncologist. But I don't think he knows anything about autonomic dysfunction so I won't be going back to him. He ordered a second blood clotting panel and my APS antibodies were still in the high positive level, even three years after my blood clots and first APS antibody test. The first one was 98 positive and the test he ran was 89 positive. Still high and still doing damage to my body. 

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@blizzard2014 - I know that Medicaid is different from state to state but as far as I understand it you are entitled to a second opinion. You could call your insurance and explain your case and they would have to provide someone who is specialized to treat your condition. You do not have to stick with a doc that does not help you and it is their job to provide a physician in that field. Yes - what stayathome said is correct - an Electro Physiologist would be the first one I would see. There has to be one in your plan that they cover. Also - every insurance has a case management specialist - they are trained professionals who help with cases just as yours and help you find the care you need. Before yo pay more out-of-pocket call your insurance and ask for case management and explain your case. I bet they will be able to help you. Lots of luck and well wishes!!!!

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