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RichardInAz

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About RichardInAz

  • Birthday 11/01/1975

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    Arizona
  • Interests
    Finding a cause for POTS

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  1. Tammy, your signature is very much like mine and several others! I'm 33, have POTs, PSVT, very hypersensative reaction to adrenaline: although my catecholamines and metanephrines are LOW normal, my alpha or beta receptors are SUPER SENSITIVE to adrenaline. I can't tollerate beta blockers. I also take levothyroxine for hypothyoidisim. I also have MVP, super high DHEA levels and low cortisol. WHAT THE HECK! I've seen five other people EXACTLY like this. It seems to have something to do with adrenal issues, secondary to taking levothyroixine. Were you taking Snythroid BEFORE this all started back in 2000??? Richard P.S. I am also fair skinned with red hair green eyes - like the other posters. Strange!
  2. Well, on the subject of that stomach fullness feeling... if I push on my stomach the right way when standing, it sends my systolic pressure through the roof. I wind up with a pulse pressure of 75 or more! Then I get symptomatic. Does anyone here get a pulse pressure this high? Pulse pressure is the top number minus the bottom number. Update.. ok this keeps getting stranger and stranger. I found that if I press on my stomach when I stand up, my BP shoots up to 170/95. If I just stand up and NOT press on my stomach, I only go to about 130/75. I'm 105/60 when sitting. What in the world!? Thanks!
  3. Thanks for the replies. I might try cutting the 25mg in half and just take it when I'm symptomatic - to see what happens. I can only keep my hr up if I'm standing so I probably shouldn't take these before I go to bed. Quick question: What IS that bloating feeling that some of us get we get when we stand up (below the heart)?? I read somewhere that it is blood pooling up there. My cardiologist said that's unlikely, and that it is more likely blood leaving the stomach/GI area. Does anyone know?
  4. I'll make this as short as possible because I don't have a lot of time to write (btw, thanks to all who responded to my other post!!): I have hyperadrenergic POTS. When I stand up from a sitting position, my BP goes up a lot, I get really bad bloating in my stomach (strange feeling) and my heart rate increases 30 - all when I stand up. My symptoms are MUCH, MUCH worse when I'm anxious or under stress (like in a doctor's office) or after exercising, being in the heat, etc.. etc. I'm on NO meds for POTS at the moment. My cardiologist wants to start me on 25mg of metoprolol (beta blocker). Is this a smart thing? I ask this because when I sit back down, just 2 minutes later my BP will often fall to 90/50 and HR down to 55... all without meds. This sort of contradicts beta blockers I thought. He said it would be ok. I just don't know what to think. Then I asked him about clonodine but he said that wouldn't help me. Hmm. Thanks, Richard
  5. Well, this has been my second trip to the ER in the past two days. Each time its in the evening and it happens right after I eat dinner... my heart starts pounding and my blood pressure shoots up to 200/100 or more (from my average of 110/70). I've been keeping a log of blood pressure and glucose for the past two days. I was doing excellent all day.. eating small meals, just relaxing and no exercising. My HR has been very stable at 105/65 or so all day. Then in the evening I ate a large meal. 10 minutes later I felt HORRIBLE! Sweating hands, numbness, dizziness.. I checked my blood sugar and it was all the way down to 60!! AFTER I ATE! My bp increased to 210/110 and I had a headache. So we packed up and went to the ER again. It took three hours but I went back to normal with no meds. My glucose returned to 100 and my bp went back down to about 120/75. They said I might have reactive hypoglycemia. Anyone heard of this? Does it go along with POTS? Well, aside from the hypoglycemia, I also wonder if anyone here with POTS gets this sick with high BP just after eating a large meal? Thanks!
  6. 1. high blood pressure upon standing (200/100 sometimes, but I always go up 20 or 30 mmHg when standing). 2. Tachycardia when standing (go from 65 to 120 often) 3. Adrenaline rushes 4. A strange fullness feeling above my stomach but below my heart. 5. Severe brain fog that comes and goes every few weeks The thing that put me out of comission was the high blood pressure and fullness in my stomach upon standing. I guess that is blood pooling up there? Whatever it is, that is what made me stop exercising a year ago. It can even cause me to have PACs and PVCs.
  7. O-M-G!!! YES! I cannot be outside for even *20 seconds* or I will be down for the rest of the day! Breathing in the hot air makes my BP and HR sky rocket and I don?t feel good for hours. I see older people running and biking, and I think to myself ?HOW CAN THEY DO THIS??. I used to be able to do this but I can?t survive 20 seconds of standing outside. FYI I might have the hyperadrenergic form of POTS (tests pending) and live in Phoenix, AZ. It feels like 666 degrees Fahrenheit during the summer.
  8. Two of my favorite smoothies I make just about every night: Orange Peaches: In a blender combine: 4 peaches, skinned and seeds removed* 4 cups of ice 2 cups of orange juice 1/2 or 1 cup orange sherbet Blend and enjoy *one time I forgot to remove the seed, so I had to call poison control (the seeds can kill 'ya). My other favorite is an energy drink that is loaded with fiber, amino acids, protein and antioxidants. Its made with the a?a? fruit that is grown in Brazil (pronounced Ah-Sigh-EE). It is listed as Oprah's #1 food. Brazilians drink this stuff before and after exercising. It sort of tastes like chocolate and cherries and you can order the frozen stuff online for making smoothies. Chocolate A?a? Smoothies 1 bag "Amazon Mania! AcaiRaw" from Whole Foods or 3 cups of AcaiRoots brand A?a? (order online from www.acairoots.com) 1 cup of ice 1 or 2 cups 2% milk (depending on the consistency you like) About 10 tbs Hershey's chocolate syrup (I just pour a bunch in) About 5 tbs pure cane sugar (or sweeten to taste) Blend and enjoy. You will be sitting on the ceiling after drinking this. Another good A?a? smoothy: Pineapple-Orange A?a? Smoothies 1 bag "Amazon Mania! AcaiRaw" from Whole Foods or 3 cups of AcaiRoots brand A?a? (order online from www.acairoots.com) 2 cups of ice 1 or 2 cups pinapple-orange juice (depending on the consistency you like) Blend and enjoy.
  9. Thanks everybody. I'll try Dr. Goodman and Dr. Wissner. I'll try anything because right now, my cardiologist keeps referring me to the endocrinologist, who refers me back to the cardiologist. I'd like to see them both in a boxing match.
  10. Both my wife and I have POTS. I swear! Now how strange is that!? Her heart rate goes up 30 or 40 when standing as does mine. I'm a bit worse, and I have hypertension sometimes when standing. The only medical conditions my wife and I have are hashimoto's thyroid disease and adrenal fatigue. It freaks doctors out that we both have identical problems. We were both exposed to black toxic mold prior to all this. Check this out: http://forums.realthyroidhelp.com/viewtopi...?f=2&t=7320 Seems a lot of people who have thyroid disease or adrenal issues are having similar symptoms!
  11. It happened again! I spent the whole night in two different ERs. First of all, I was diagnosed with POTS recently. I?m going to see Dr Grubb asap (my appointment is April 2009). My hr is 65 sitting, 120 standing and bp goes from 100/60 sitting to 130/80 standing. This is the case 99% of the time. But I have had three occasions now where something else is going on. I?m super sensitive to adrenaline (hyperadregenic pots?). This last episode was just like the one I had last month. It started around 10PM last night after dinner. My bp shot up to 200/100 when standing, so I sat down but it wouldn?t go below 180/100. My cardiologist hadn?t found any meds that I could tolerate well, so I was just going to sit down and let it pass. 20 minutes later, I get ringing in my ears and a headache. Then my automatic panic mode turned on (you know, when you?re not thinking about panicking but you are shaking), then I had both arms go numb and I started getting really hot and sweating under my arms. My pulse was about 160. I was feeling terrible sick and wanted to vomit - my bp was up to like 230/115 and I could only crawl to my truck to get to the hospital. While sitting in the truck I was wondering if I should call 911. My wife drove me to the ER. I sat in the ER for three hours after being triaged! Then, a very spiteful nurse took me back.. she barely laid eyes on me and said ?ok another anxiety kid? (I?m 32 by the way). I said nothing. She took me back to the room and wouldn?t let my wife come with. She said ?we don?t have a lot of room back here and I don?t think you?ll be here long anyway!?. Ok, so 15 minutes later a spiteful doctor comes in, asks my date of birth, looks me square in the eye and says ?have you ever tried paxil, xanax or anything like that??. I said WHOA DOCTOR, do you know I have POTS? Then she asked me if I smoked marijuana. I had to explain what pots was. Then she leaves.. that entire visit was like 20 seconds. An EKG comes in.. checks out fine. 5 minutes later the quack waddles back in and says ?you?re being discharged, you just have anxiety?. My bp was still 190/100 at this point, she offered no meds and just that last bp reading ? they kicked me out. While driving home I called my health insurance RN line. They told me to head straight to another ER or even call 911 (based on what I said). I got to another ER around 3 AM and they wheeled me right in ? EKG, BP, other vitals and got me in a room within 5 minutes. Ok, I?m feeling lucky so far. I get to the room and the doc asked a lot of questions ? had bloodwork done, urine test, xray, etc. The doc even called my cardiologist who was on call at 4AM. My cardiologist told him that it would be OK to give me cardazem. Well, I was reluctant to try it because the IV fluids they were giving me were actually making me feel a LOT better! They ran 2 and a half bags into me, and my pulse went back down to 65, bp down to 110/65. Of course by then it was 6am and I was shot from the whole experience. Now I?m home, and I?m going to see my cardiologist on Tuesday. He?s going to call Dr. Grubb to see if there?s anything they can work out over the phone for the time being. Have any of you taken cardizem and did it help or make things worse? I?d plan to use it only as needed if that?s an option.
  12. Tammy, I've had to crawl around the house on all fours also - that's a bummer. It must have been really tough to take care of your little one. Yes I get very weak as well. My cardiologist tried me on a beta blocker twice.. both times I had a bad reaction where my heart rate went too low. I'm not sure how this is associated to POTS, but my heart rate falls too much when I lay down. When I'm sitting, my heart rate ranges between 65 and 85. When I'm standing, of course it shoots up to 100 to 120. But when I lay down, it often goes down to 48 bpm for a few minutes. Does anyone else get bradycardia after laying down? And another thing.. my heart rate can fluctuate by 20 or 30 just by moving my arm, leg, or changing sitting position. Its so strange. I just wanted to make a comment about your tag line: "Age 32 Diagnosed with IST, SVTs, irregular pulse, and a hypersensative-reaction to adrenaline, tricuspid/mitral regurgitation, hypothyroidism, High DHEA levels, low insulin levels, and cortisol level imbalances Currently on Synthroid and Atenolol." Funny cause I also have super sensitivity to adrenaline first of all. Little things make my heart pound like crazy but I can't tollerate beta blockers. Then you mention mitral regurgitation.. I had that with my MVP at one point. I have hashimoto's thyroiditis (hypothyroidism), and I have VERY high DHEA levels (4000% over the top reference range) and so does my wife. AND SHE also has POTS plus high DHEA - and she has hashimoto's! We're both on synthroid after having a bad reaction to Armour (which somehow made my POTS worse). I'm just a bit worse than my wife, but she also goes up about 30 bpm when she stands. What in the heck is this.. this POTS business is so darn complex. This ought to be simple to understand - there's some kind of connection here. Richard
  13. That's exactly how I felt! A friend just mentioned something about serotonin and how it can affect BP and HR. I wonder if POTS has something to do with serotonin control?? "Postural orthostatic tachycardia syndrome -- Agarwal et al. 83 ...They will have orthostatic tachycardia as well as associated hypertension. .... It is suggested that the disturbances in central serotonin production and ... " I couldn't read the rest of the article because they wanted me to pay $25 to view it!
  14. Wow I didn't realize this was such a problem for everyone else as well. Actually this is how I realized I had something wrong last year and finally got diagnosed with POTS this year. I have another medical condition that complicates this. I have a type of heart arrhythmia that I get every once in awhile called "PSVT". When I lift heavy objects over my head, this POTS kicks in and I get a few PVCs.. which can cause my PSVT. THEN I have something to worry about! My heart races to 300bpm for a few minutes. So, I will just stop lifting things over my head. Like you guys said, if I have to do this silly exercise maybe I can do it lying down. But I'm affraid to even try that for awhile! A couple questions if ya'll don't mind: The shaking and shivering... is that actually related to POTS? Not really a panic attack? I feel cold all over after this happens and I shake like I'm freezing, but I wasn't panicing. I felt sort of detached from reality for an hour or two. Is there a preferred test to check blood volume? I was told the standard tests aren't very accurate. Thanks
  15. Tonight I tried doing a small exercise where I lift a small weight over my head. I haven't done that since last year when I came down with POTS. Just two lifts of that and I felt very light headed and I thought I was going to faint. My heart was doing some sort of strange flip flops, so I dropped the weight on the ground. Then I felt shaky (I guess a panic attack had started). I recovered after a few seconds but I shook like a leaf for an hour (panic!?). Anybody else get this with POTS? Can't lift things over your head?
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