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Everything posted by london

  1. How did it help? What was the biggest improvement? Did it give you more energy, slow tachycardia...? I'm glad it helped you!
  2. Were you on the extended release? I've heard multiple people say the extended release version affected them this way but not the short acting one. Those side effects are definitely not what I want, but I still want to give it a shot.
  3. What do you mean by "bouncing off the wall" exactly? Jittery, energetic, tachycardic, ect. My fibro isn't bad, but it's the fact that all the "mild" things like depression, almost-fully-controlled-but-not-quite POTS, fibro, and anxiety combined with moderately severe fatigue both mental and physical all adds up to a crap-fest. If I can lessen all or most of these even a little bit the overall effect will be great. I'm mostly worried about sexual side effects because the birth control pills killed my already low libido and took its toll on my relationship (sex and intimacy is very important to us) and weight gain. I have PCOS that has gotten worlds better after losing 60lbs and I worked very, very hard to achieve that. It's not for vanity reasons, but for health reasons.
  4. I'm pre-med, so I'll be a doctor soon My doctors know this and always "teach" me about my condition and talk about the mechanisms about how the medicines work and I ask hard questions as well. I'm afraid though that since I'm pre-med my doctors will think I'm trying to play doctor and speak for them when I have no training I shadow doctors between semesters and "internet diagnoses" are a common pet peeve so I try to avoid that. I'm glad Wellbutrin helped you. I'll bring it up at my next appointment then. I can always stop it if it doesn't help or makes things worse.
  5. What type of POTS do you have? I've never been officially tested for a specific type, but hyperpots fits me the closest.
  6. Right now, I'm on 240mg verapamil XR and 5mg midodrine. For the last year or so, I've gotten pretty bad fatigue, fibromyalgia, mild anxiety and mild depression. My grades for this year have dropped because I have no energy or motivation. I'm hesitant to go on SSRI's because of side effects but I've heard Wellbutrin can help lower nor-epinepherine levels as well as counteract the symptoms I listed. Has anyone tried wellbutrin with NO ssri's? Did it lower/ raise BP or help tachycardia at all? How can I bring this up with my doctor without sounding like "telling the doctor what to do?"
  7. Compression stockings prevent blood from pooling in the legs, which is a major problem in POTS. By keeping the blood out of your legs (by increasing circulation, not cutting off supply) more blood gets to the heart and brain and helps pretty much every symptom of POTS. For me, it increases my blood pressure, deacreases tachy, dreacreasing pretty much every symptom of POTS because this blood pooling is one of the main culprits of POTS symptoms. It has made a huge difference in my life! Also, make sure you get either compression pantyhose or thigh-highs as knee socks do nothing for POTS. The blood just ends up pooling in your thighs instead of the calves. Personally, I can't stand pantyhose so I get thigh-highs.
  8. I am literally squeeling in delight! This is exactly what I was looking for Thank you!!!! The prices are a little high, but sale items are right in my price range. I'm definatly getting these: http://www.rejuvahealth.com/luxe-lace-thigh-high-648.html if they get my size back in stock. I love your user pic, by the way
  9. I've recently discovered the wonders of compression stockings! I was considering bumping up my dosage of verapamil and midodrine until I scored these beauties! www.amazon.com/Thigh-Compression-Stockings-Medium-Closed/dp/B003Y5YKV8/ref=sr_1_1?ie=UTF8&qid=1359295946&sr=8-1&keywords=thigh+compression+stockings I would think they would be uncomfortable or I would constantly be aware of them, but this is the first time ever I have been totally unaware of my legs. I guess I never noticed how much the blood pooling iin my legs caused them to swell, ache, and affect my pulse. I don't take them off until I am in bed about to go to sleep and I put them on before I get out of bed in the morning. I have these, which look like leggings under shirts and shorts. They go all the way up my legs (I'm very short) and I can wear them under the shortest skirts and shorts I want some pretty ones as well. I;m going to buy some sheer black ones next to wear with dressier clothes, but I want some "fun" ones as well, if they exist! Do they make any 20-30mmhg or 30-40mmhg in patterns, tube sock design, white, hot pink/ purple, ect? If so, care to share a link? I've looked everywhere but I can only find beige or black :\ Also, I want some under 30$ or so, my insurance doesn't cover them and I am a broke college kid!
  10. I was told by my allergist, my pharmacist, and both my cardiologists that beta blockers were a direct contradiction to the epipen and the allergy was a higher priority than the IST (IST isn't lethal, but anaphylaxis without the epipens working and being far from a hospital is.) They lower your pulse and BP, increasing the risk of anaphylatic shock and prevent the epipens from working as well as they should. I live about 20 minutes from the nearest hospital so I can't take any chances with the epipen not working. I already wear a medical alert bracelet and carry a wallet card with all my info on it, though! What is pyridostigmine? I may bring that up as an option. My doc said we will try verapamil next then wait and see how that plays out first.
  11. I've been off the forum for quite a while and I have made 15 posts total and I want to read through my past ones, but I can only see my past 4 or so when I try to view my posts from my profile. What gives?
  12. I do take midodrine and it helps with the low BP caused by the high dose of beta blockers/ calcium channel blockers, but it didn't help the tackycardia at all. My BP only mildly drops upon standing and I take it really only to compensate for the high dose of beta blockers/ calcium channel blockers, it's the heart rate that is my problem. SSRI's are out of the question for me personally as my family has a very bad history with them (suicidal thoughts with them, my cousin took his life because of it.) I couldn't take birth control hormones because they ALL gave me severe depression, so I would rather not risk any med with a high chance of messing with my moods. For me, emotional pain is much worse than physical pain! The more I experiment with meds the more I see BP/ heart rate increase from posture fluctuation isn't my problem, it's the constant high heart rate. I beginning to think I don't have POTS, only IST. I will mention an EP study at my next appointment and go from there!
  13. How exactly is she worse? Is the tachycardia worse or what symptoms does she have?
  14. I have two doctors on my "team", my general cardiologist and an electrophysiologist. They both threw the option of an ablation around but only as a last resort when I was first diagnosed, so there was never a serious discussion other than "well there is an ablation but thats only for if the medication doesn't work out." For me, my POTS is either mild or non-existant and the diagnosis was an and/or with POTS and IST, but now it seems to be more IST since my heart rate is high all the time no matter what. I haven't had a serious discussion with either doctor yet (my appointment is in a few days.) I'm sure more testing will be ordered to get a more difinitive diagnosis to find out if it is only IST or IST and POTS. Might I ask how the doctors can dstinguish between POTS and IST? I had a tilt table where my pulse went from 110 to 150 and by BP dropped from about 120/80 to 100/60 and a 24 hr holter showed my average heart rate was 101 where 95 was the marker for IST. Other than that I have had no other tests. I live far away from the POTS specialists you mentioned, but I go to Pikeville Medical Center in Kentucky and their cardiology department is teamed up with Cleveland Clinic. What is ivabradine? How does it work and could it interfere with an epipen?
  15. Bisoprolol has been keeping my resting heart rate down to about 70, but I discovered I have a severe allergy and need an epi pen and cannot take beta blockers anymore. I'm on the highest dose of a calcium channel blocker (Cardizem) and my resting heart rate is still about 110 and shoots to about 160 if I stand or walk longer than 5-10 minutes. I have pretty bad inappropriate sinus tachycardia with mild POTS that is worsened by the extent of the IST. I'm nervous about the ablation and the posibility of needing a pacemaker after, but if it helps the tachycardia I'm willing to take that risk. Has anyone here had an ablation?
  16. I can totally relate, honey! It's the weather for me. It's been 103 degrees fahrenheit, 100% humidity, and non-stop storms and I can hardly leave the house! I find a (cold) bubble bath works wonders for me. I hope you feel better:)
  17. I know a case of flu or something like that around ovulation time can mess it up for a cycle or two, but I have no idea if chronic tachycardia can mess it up for so long!
  18. I'll get the sparkling grape juice (wine/bubbly substitute), ice water, and arrange for waiters (so getting up and down for refills is not needed!)
  19. I'm so sorry, BellaMia. If I could, I would give you a big hug through the screen. I know what it's like to lost a loved one and wouldn't wish it upon anyone. We all love you and send our best wishes your way.
  20. Thanks! We just finished a horrible thunderstorm here and all day I've had a pounding headache that no amount of coffee or midodrine would cure, nausea, dizziness, and general "bleh".
  21. I've been posting so much, I know! You guys are just so helpful and I don't want a million topics on one thread! I've had an iffy-kinda borderline diagnosis of polycysitc ovary syndrome for 2 years. I had no other symptoms except having a period maybe once a year, and even then it was anovulatory bleeding. From ages 10 to 16, I think I had 5 or 6 periods total. I lost 50lbs, started metformin, and started heart medications, and the pill all at the same time. Now I am off the pill and have a copper IUD (love it), but I still take metformin to keep cycles regular. So far, they have been pretty consistently 25-35 days. I'm now questioning my PCOS diagnosis. My hormones were a little off, but borderline. I had a few cysts on my ovary, but not the characteristic "string of pearls". Everything was diagnosed on my not having menstrual periods. My new cardio thinks that since my heart rate was consistantly 150-200 and blood pressure was always everywhere, my body just decided babies weren't a good idea anytime soon and shut down the factory. Now that I am on medication and have things decently under control, I am finally what I should be. Anyone else have no periods?
  22. It's not news that we are in a heat wave in the USA. In eastern KY, it's been non-stop thunderstorm, 100% humidity, and 100+ degree Fahrenheit temperatures. I AM A MESS. Weather changes and heat make my POTS almost unbearable. In fact, the only time I even notice my POTS in winter is before a big snow storm. However, my new electrophysiologist (who deals with POTS patients almost weekly) practically laughed when I mentioned this. "No, POTS will not make you predict the weather, lolol." WRONG. I have puberty-induced POTS, my mother is pretty sure she had pregnancy-induced POTS (pregnant with me, we are both only children) and has a leaky valve, my grandmother (her mother) and great aunt (grandmother's sister) have SVT. We all flare before a storm. Is this common or is my family just crazy? Also, do any of you have family with a link of heart problems? I know IST is just different flavor of SVT, and my mother and I both have had POTS (or POTS-like symptoms). My other cardio says it isn't genetic, but this is just too much of a coincidence for me.
  23. My doctor did mention heart rate may play a role by starving my heart of oxygen, thus creating heart attack like pains. BUT, he also said that chest pain is common in both in IST and POTS, so he pretty much told me that he had no idea, just theories. Say if I have a flu, or sinus infection, or anything along those lines and I can't get my pulse down, should I go the ER? Or should I just pop a beta blocker and wait it out? At what heart rate should I be worried? Also, what about the skipping/extra beats with the lightheadness? When I call my doctor, they tell me to go the ER asap, but my electrophysiologist says it's harmless. What "guidelines" do you guys use for ER trips, since the whole "lightedheadedness, dizziness, chest pains, short of breath, heart rate" thing is a daily happening? What are our "special" guidelines? THANK YOU! Finding this site has truly been one of the best things that has happened to me in these 2 years. You guys help me so much and I am happy to help any of you in any way I can
  24. Yep, it's inappropriate sinus tachycardia. I was getting worried that my sex drive was non-existent at 18, but I blamed it on the POTS and pills. Now that I'm on midodrine, it back and my fiance and I were so thankful! It had been putting a serious strain on our relationship. Aside from the chest pain I described, I also get a kind that feels like its direct on the heart. It's very, very painfully sharp and only hurts when I inhale which leads me to have to take very shallow breaths and leaves me short of air. There is no trigger (that I can tell) to these pains. Sometimes they happen with pots and ist attacks, and sometimes they come out of no where. Anyone else? Last thing: I have developed episodes of skipping and missing beats. It leaves me lightheaded, breathless, and my chest hurting. I have discussed this with my doctor and he said as long as my ECHO was normal (it is), then they are harmless and to just pop an extra beta blocker and midodrine. If I call a doctor during an episode of anything, they tell me to call 911. Since this happens pretty often, what should I do? At what point should I go to the ER?
  25. Bring on the coffee! My POTS is noticeably worse if I DON'T have my 2 cups a day. In fact, My doc said 2 cups of strong coffee a day can help to keep BP fluctuations at bay. If my HR gets too high, I just take a beta blocker to compensate. My family starts drinking coffee from the bottle practically (my grandmother but cold, milked coffee in my mom's bottle for real). However, I can totally see how it can hurt some with POTS. We are all different when it comes to treatment.
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