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  1. Start paying attention to what you ate the nights when this happens. I had the same thing going on for a few years & thought I must have some strange intolerance to a spice used in Mexican and/or Italian dishes. Turns out I was having classic gall bladder attacks from the high fat in the Mexican & Italian food I had eaten those nights.
  2. Dr Lawrence Kinsella. He is a neurologist who specializes in autonomic dysfunction. I drove from Kansas City to St Louis last spring to see him & wish I would have years earlier. He is awesome.
  3. Thanks. I do drink soda for the caffeine ( I SO wish I liked coffee), but I have IBS also which can get bad if I have more than 1. Caffeine pills made me irritable. I've read that Rx stimulants such as Adderall are used w POTS, which is the only why I tried it. While I did not check my pulse on those days, I did not notice any problems with it either. I mostly posted because it got me thinking & I'm curious is there a scientific reason it's not raising the HR in POTS patients, or is it probably just the fact that it is such a low dose?
  4. My POTS dx's by TTT, 3 years ago, and just recently confirmed with another TTT. I am on fludrocortisone, wear compression hose & abdominal binder, drink tons of water & salt, all which have helped. I see a cardiologist once per year for the fludrocortisone rx and that's it. He's not well versed on POTS. My fatigue and brain fog are my biggest problems. My son is ADHD and recently had a dose increase in his medication. You know where this is leading.... I know that stimulants are used for POTS so I tried one of his Adderall that was not longer the appropriate dose for him. Brain fog and fatigue were lifted. I felt like I used to. 10 mg Adderall. I have taken it 5 different days, and it is so nice to feel like my old self and actually get stuff done. I talked to my PCP about this today, and was scolded "You took speed and you felt good. Not surprising." The scolding was somewhat deservedly so, because I know you should never take someone else's meds. BUT he knows how long I have been struggling with the fatigue and not being able to think straight. He would absolutely not prescribe a stimulant unless I get a DX of ADHD from a psych and get a letter from the cardiologist that it is ok for me to take a stimulant. All very valid, but got me thinking.. Why would stimulant use in POTS not cause HR increase as it would in the typical person? I'm pretty sure the cardiologist will think its a bad idea too. Common sense says it would be a bad idea to give stimulants to someone with a diagnosis that includes the word tachycardia. Can someone explain?
  5. Hi all. I have been prescribed 30 mg mestinon 3xdaily for 3 months now. I've only been taking it 2x daily most of the time, because honestly I forget the evening dose & didn't notice much of a difference anyway. Seemed to maybe help, but still pretty slow moving. Yesterday I tried doubling my dose to 60mg 2x daily & felt great! Better than I have in a long time. I usually put my meds into a pill box once a week. For some unknown reason I looked at my pill bottle this morning. The tablets are 60mg tablets, not 30 mg tablets. So I've actually been taking 60mg Bid, and yesterday I doubled to 120 mg bid, with an excellent response. This seems WAY higher than the typical dose for pots. I know everyone is different, but is anyone else taking, or know of anyone taking that high of a dose for pots? Makes me wonder if I should talk to my dr about an MG consult. I do have a call placed to my dr, but wanted some extra feed back from the people in the trenches so to speak. Thanks,
  6. Awhile back I read a post, I though maybe a locked one that had a HUGE list of meds & how they could affect pots symptoms. The one that jumped out at me was birth Controll pills being listed as a volume expander. It also listed a couple other meds that had volume expending properties, but could lower blood pressure) High dose estrogen BCP's were my savior for years. After a hysterectomy & factor V Leiden dx (no more estrogen for me) I can't help but think the lack of estrogen brought my symptoms to the point of a POTS dx. Can anyone help me find the post I'm looking for? I've spent the past 2 hours using the search feature to no avail. If I remember correctly, the meds were grouped into mode of action categories. (It's not the big list on the dinet home page. Thanks!
  7. I had endometriosis as well as polycystic overies, and in hind sight milder dysautonomia for years. Had a hysterectomy last year & full blown pots followed. In the past I felt the best when I was on high dose estrogen birth Controll pills. I was even taking additional estrogen with the bcp's. I remember a GYN one time saying she didn't know why, but it seemed like talk thin women(me) always felt better on higher estrogen bcps. Tall thin women tend to also have lower BP in general, so maybe that's why. We did the hysterectomy due to pain, risk of estrogen with my increasing age (38). Found out I have a clotting disorder and now can no longer take estrogen. (A week in ICU with bilateral pulmonary emboli after surgery). I read somewhere on here that the synthetic estrogen in bcps acts as a volume expander. Wonder if that is why I always felt better on the pill, even better on high dose. Also would explain why I fell crappy now that I can't take it. Also for all the people who rave about progesterone, it made me depressed, lethargic, & unable to get our of bed even in low doses. It is known to decrease BP. Good for some, awful for others. Hormones definitely play a part in all of this. I ran across this post trying to find the post that listed either estrogen or bcp's as volume expanders. It had a huge list of meds & their possible mode of action & how they might affect pots. I can't seem to find it now....
  8. Everything I read about florinef says to notify your physician if you have symptoms of dry mouth and or dry eyes. My dr does not seem to think this is a problem. I drink 2-4 L of water daily with nuun tablets. Florinef did help, but I have stopped because the dry mouth was so bad & my eye doc was concerned with the level of dry eye. I've developed cataracts over the past year (I'm only 39) & really don't need more vision issues. Recently added midrodine, which I definitely notice an improvement in energy. I'm also seeing an unacceptable increase in irritability with midrodine. I'm yelling at my husband and kids for dumb things. My cardio knows little about pots. Why would florinef cause dry mouth & eye? Is that an indication of a different issue? This is SO frustrating.
  9. I'm very new here & still figuring out what is typical vs non-typical. I had a tilt table text 2 weeks ago. Thru my GP I've been on cymbalta for joint pain, bupropion and provigil for fatigue for the past 10 months or so. I got a cardiologist who started me 0.1mg of florinef last winter when my low BP symptoms got bad, then on 2.5mg of midrodine last week after he got the results of the tilt test. I was given iv saline prior to the test, I think 200mls. I was tilted for 45 minutes, given nitroglycerine, then tilted another 20 minutes. Here's my question: Both times when I was laid back down flat on the table, I had the sensation the table was inverted because I felt so much blood rushing to my head. The nurse swore it was level, but it took 2-3 minutes before it felt that way. I assumed this feeling was "typical" for POTS. It's probably just all the blood that was pooling in my extremities starting to circulate again. I've not yet read anyone else describe this though. I have learned to search topics here and have always found comfort that there is someone else out there with the same symptom(s). Anyone else had this feeling?
  10. I have an Omron BP760 arm monitor. I frequently get the error code E5 which means clothing is interfering with the arm cuff. Problem is I always make sure there is never any clothing under the arm cuff. The lowest systolic it seems to register is 85, and I know my systolic goes below that, I think regularly. My guess is the machine thinks a BP below that is too low, so it assumes there is a sleeve in the way. I could not find low end parameters listed in the manual. What brand and model works well for those of you who run low?
  11. Well today has been a good day! I decided to try the Midrodine instead of waiting until vacation in case it made me sick. I feel like a million bucks! I've ran errands, cleaned the house, and still have energy. Just as good, I got the name of another gal who is new here thru "meet the members", who lives not far away. She was just diagnosed with POTS by an area doctor who studied and worked at cleavland clinic and is very familiar with pots. I have a new patient consult Dec 5th! I'm going to wait on the endo for now. If this new doc is familiar with Pots, he should know what lab work to order to evaluate my other symptoms. I really don't want to have to try and talk a new doctor into ordering labs. Thanks for the replies. While I don't like knowing there are other people suffering, it is very comforting to hear the stories & know I'm not just lazy or crazy.
  12. Thanks for the responses. My cardiologist called this am and has called in an rx for midrodine. Every time I have checked in the past year, and every time the dr has checked, my resting HR is 90-100 & shoots up into the 150's to 160's with a minute of standing up. My normal BP of 90ish/70ish also drops when I stand. My home cuff usually is unable to read a standing BP if I'm not wearing compression hose. I mostly wanted the tilt so there would be official documentation if my dr were to retire, move, get hit by a bus, whatever. I am certain the saline made the difference in my tilt, because my lowest BP on the tilt table was 82/56 & that was after the nitroglycerine. Since it's cooling off here in kansas I am fine with the compression hose & prefer them over meds. We are vacationing in Florida in 2 weeks though, so I will probably try the midrodine there. I just wanted to figure this out now rather than waiting until spring/summer when it's too warm for compression hose, but they are my only option to get my BP up and feel well. The other thing that makes me question POTS as the correct or sole dx, is the weakness feeling. It's like gravity is pulling down on me harder than it should. It happens every time I climb the stair carrying something (or someone). I haven't read about anyone describing a feeling like that. The light headed and dizzy doesn't bother me so much as I know / can feel how far I can go before I need to sit down or I'll pass out. The weakness part makes me think neuro, but then I'm back to wondering if I've become a hypochondriac. I should not need a cardio, endo and neurologist for Pete's sake! Worth mentioning also, I have Raynauds, unofficially dx'd by a lactation consultant while I had trouble breast feeding my oldest. ( it can affect nipples as well). I simply avoid cold as much as humanly possible. My ears, fingers, and toes are in extreme pain if they get too cold. People think I'm a weanie if it's not that cold, but they hurt. I've never mentioned it to a doctor when it's pretty easily treated (for me anyways) by avoiding the cold. Margibee- how long ago were you diagnosed? Have you had vision issues as well? You said our symptoms sound similar. Do you have any other dx, or just the pots? Thanks for the input on endo's being very through in your experience. That statement alone makes me lean towards finding one.
  13. Hello all. I've been lurking on this web site reading thru questions and answers for the past year now. I figured it's time to join the fun. My story starts exactly one year ago. I was 38, and went in for a hysterectomy & cholecystectomy. Hysterectomy due to sever menstrual pains, polycystic ovaries, and pelvic congestion syndrome. The cholecystectomy was because of chest pain I was afraid was a heart attack. Not a heart attack, but because I had mild right sided pain afterwards the ER did an ultrasound and saw my gall bladder was full of stones. In hind sight, I've had the same chest pain since, and now have no gallbladder so I think it as a coincidental finding. Any how, surgery went fine, recovery going good, 9 days post op I started having pain when I took a deep breathe, or laughed, or eventually talked. I returned to the ER after being told I was fine by a physician earlier in the day. My husband was sure it was my back & I just needed to go to the chiropractor. Turns out I had 3 pulmonary embolisms, so I spent the next week in ICU, and the next 4 months on blood thinners. My hope with the hysterectomy, was I would be able to get off of all my meds, thinking the hormone imbalance was my main problem with fatigue. HA! I slowly but surely went back on an antidepressant, I asked for cymbalta because I had horrible joint pain that I had never had before. I started on Provigil because I had taken it in the past for "somnolence syndrome" and it helped me get thru the day. Eventually my primary added Bupropion at my request because I felt awesome on it way back when, but it made me very irritable so I stopped it. The cymbalta was helping my joint pain, but making me sleepy. I was hoping the negative side effects of cymbalta & bupropion would cancel each other out, which they luckily do. I have always had mild OI, nothing that I treated. I just get dizzy when I stand up way more often than the average girl. Always had low BP. Heat has for the last few years made me weak. I love a hot bath, but usually need to lay down for at least 10 minutes after so I don't pass out. After coming home from ICU I could hardly walk up the stairs for a month. I was SO tired. I knew I needed recovery time, but I also knew something was very different. The first time I almost passed out I thought maybe m asthma was making me so tired & week. I got out the pulse ox, and my HR was 169, standing in the hallway! I'm an RN so I started putting my symptoms together and ran across POTS. The bupropion & provigil were requested after I learned about POTS because I knew they were used as treatments. My primary sent me to a cardiologist who encouraged, salt, water, and support hose. He mentioned POTS on his own, but didn't think that was it. The support hose work wonders! My BP goes up 30 points with them on.. This spring when it got too hot for support hose, I went back to the cardiologist. He seemed perplexed, by my young age & symptoms on all of the medication I was on. He did though see my BP go down, and HR go up from laying, to sitting, to standing, so he prescribed florinef. It worked great the first month or two, then seemed to stop, so i made another appointment with the cardiologist. This time I brought info about POTS from Johns Hopkins with me for him to read. I highlighted all of the symptoms I had. He agreed to order a tilt table. He was still perplexed, and said he would need to read more on POTS. Last week I had the tilt test. What really irks me, is that they gave me a saline infusion before the test! Yup, saline infusion, that many say works wonders. It did. I felt awesome that day, and pretty good the two following days. In the 1st ten minutes my HR went from 80, to 107. In the first ten after nitroglycenie it went from 108 to 149. My BP dipped slightly, but not much. I did feel on a couple of occasions my worst symptom which is extreme weakness thru my neck, shoulders, and chest. It's like someone is below me pulling soon on my shoulders. Arms and legs feel weak as well, but the extreme is thru my torso. The nurse said my HR went up every time I said I had the weak feeling. My BP was uneventful thru the test. Low normal, with little fluctuation. The creep dr that was there for the test said not POTS. I need to drink more & add salt. Never mind I drink 3-4 liters per day & supplement at least 2 grams of salt daily. I told him that & he said good. I should try support hose. I told him I do and they make a world of difference, but I really struggle when it's too hot to wear them. We then went into a down ward spiral of him asking if I don't have AC, me asking if I'm never supposed to go outside again, him saying I can I just need to wear support hose & pants, me saying I would pass out from overheating if I did that during the summer, him then asking again " don't you have air conditioning?" It ended with me crying. In addition to this, last spring I went to the eye doctor. He was very concerned. I was developing a cataract. Big change since last time I saw him a year earlier. He prescribed glasses. A month ago I felt like my vision was getting worse again. I never really like the guy who said I was developing cataracts, so I went to my sons eye dr. She agreed the cataract in my left eye was much more than she would expect for a 39 year old. She was concerned at the prescription change in my right eye over the 6 months since my last exam with the other guy. She was also concerned about my dry eyes to the point of writing a prescription for steroid drops for a month, & restasis for 6 months. I've always had dry eyes, they don't feel any different. She says I now need bifocals! I can't help but think the vision stuff is related to the POTS stuff. The only thing I can find on medical issues & cataracts is hypoparathyroidism, which is frequently found with Addisons Disease, which has very similar symptoms as POTS, which makes me think I'm a hypochondriac! Anyone with anything similar? I have an appointment with my cardiologist in 3 weeks. Wondering if I should be looking for an endocrinologist as well. If anyone has a recommendation for one in KC I'd love to know about it. Sorry for such a long post. I guess I should not have just lurked around here for the past year. Thanks for listening/reading. Any advise is welcome & appreciated.
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