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Everything posted by daisy

  1. Hi Cordelia - Don't know if this will help, but I too experienced both highs and lows. In the beginning, I was always low. About five years in, I started to go high. Cardio believes I have the hyperadrengenic form of POTS and my understanding is that high and low bp is a hallmark of that. If I'm out and about, I can go either way. During my tilts, my bp skyrocketed the last time where before it had plummeted. When I'm out and start feeling shaky and get that horrible pressure and whooshing in my head, I know my bp has either shot up or gone way down - I never know until I check. It's frustrating because I can't really take meds for it. The meds for the high bp will drop it too low during the low times and vice versa. Good luck on finding an answer. I hope you can rule out that something more serious has made your symptoms change. For me, it was just the way my POTS progressed I suppose....
  2. Hi Desiree - Not sure how much advice I can give you but I can tell you what goes on with me. I have POTS as well as Inappropriate Sinus Tach, Atrial Fibrillation, Atrial Tachycardia and have had SVT (Super Ventricular Tachycardia) and episodes of bradycardia. I was on Flecainide for the arrythmias for two years. They did help my arrythmias but I had to go off the medication because the side effects were very bad for me. In my instance, I have been on heart monitors more times than I can count until the Dr. decided to implant a loop monitor in my chest and I had that in for 2 1/2 years until the battery died. So, needless to say, we have tons of data on my arrythmias. My Dr. told me that the arrythmias are a separate issue from POTS - not caused by the same thing (I was told POTS tachy is caused by bad signals to the heart from the brain (the autonomic nervous system) while the other arrythmias are from my heart's electrical system malfunctioning). I would still have the arrythmias if I didn't have POTS. Having other arrythmias makes the POTS more difficult to treat because treatment for one (like a pacemaker) may really mess up POTS or at the least, not help it at all. As for the IST, for me it's not all the time. I could have a normal resting heart rate but I would get "IST surges" where I would be sitting down watching TV or something and my heart would suddenly take off. Having POTS makes this worse because if I stand up during an IST episode, the POTS kicks in too and the heartrate will get even higher than it normally would. It's funny because I am at the point where I can tell what type of arrythmia I am having. Anyway, like Autumn said, you are not alone and I hope you get the answers you are looking for. It's a shame that you had a positive TTT but not a diagnosis. I hope you get the right one soon..all the best to you.
  3. Hello, I can definitely relate to what you are experiencing. My Dr. has told me it is due to my having an overactive vagal nerve....and vagal stimulated POTS and heart arrythmias. Bowel movements (or just the process of the bowels moving through the digestive tract) is a big trigger of vagal nerve sensitivity. I will often get a racing heart, lightheaded, nauseous, and feel like I'm going to black out prior to going to the bathroom. If it's a bad bathroom episode (I'll spare you the details!) it's not unusual for me to actually go into afib (which is a separate arrythmia issue for me but still can be stimulated by the vagal nerve problem). I've actually started to pass out on the toilet. It's pretty darn inconvenient! As for the chest pain, it is not an uncommon POTS symptom when our hearts are racing and even sometimes when it's not. It's a symptom I fortunately don't get too often because I HATE it! Anyway, you are not alone!
  4. I read the website and it is intriguing. I have some of the symptoms but really don't fit the profile. For example, I have trouble gaining weight and feel much worse after eating due to postprandial hypotension and seldom have respiratory issues. The relationship between cortisol and vasoconstriction is very interesting though. I can see where POTS symptoms definitely crossover with adrenal fatigue. I probably do have some degree of adrenal fatigue given my stress level but I am not convinced it causes all my symptoms. I have known a couple of people who went on this protocol and did improve......Hopefully, it will work for you Let us know - the supplements may be worth a try just to get the adrenals in better overall condition! And anything that helps with our overall health is good!
  5. Thank you so much to Mack and Hayley!!! I would love to include them both in my article - it will be great to get a perspective from a guy and a girl. What I will do is put together some email questions and forward to them. If you could please send me a personal message with their email addresses, that would be great. Thank you so much!!! I am very excited to write this article
  6. Thanks Julie! It would be great to profile Mack - I would love to write about a boy and a girl in the article! Hope all is well with you!
  7. Hello, You're right - It is very hard to find an article about POTS specifically that doesn't mention the symptoms arising upon standing since that is the technical definition of POTS but many people do have symptoms sitting down (like me!) but it's easier to make a clinical diagnosis when people are upright I suppose. Would it help to just cite articles about dysautonomia in general? I went through my bookmarked articles about POTS and did come across one that talked about symptoms sitting down and also another article about dysautonomia - maybe they will help? Here are the links: http://www.associatedcontent.com/article/1166419/symptoms_causes_and_how_to_treat_dysautonomia.html?cat=5 http://emedicine.medscape.com/article/902155-overview Good luck to you and your son!!
  8. Hello, Could be stress, could be the bug you're fighting or it could be just plain old dysautonomia acting up. I have been battling POTS for almost ten years and have found it runs in cycles for me. Like you, I will experience a few weeks of feeling relatively functional and then crash and be practically unable to do anything but lay around. I have stopped trying to figure it all out because it seems to be pretty random. Now, having said that, there are definitely certain triggers like extreme stress, adrenaline heavy situations, and HORMONES. I have no doubt there is a hormone connection and if I could figure out what hormone I am lacking during my flares, I would bottle it in a minute! But, other times, there is NO rationale at all. I have learned to be grateful for the good times and try to accomplish as much as possible during those times. It's so frustrating though not knowing when the flares will hit. All the best to you!
  9. I can definitely relate to what you are saying. I can't tolerate much excitement at all these days. I avoid parties or gatherings because just being in the room with a group of people who are laughing and talking and talking to me can send me into overload. I can't focus on what anyone is saying and will get very dizzy and lightheaded....often my heart will zoom as well. Not sure why this happens - I always assumed it was my bodies' inability to tolerate adrenaline......that I release way too many catecholamines during adrenaline release? I have the hyperadergenic form of POTS. Anyway, I now will avoid crowded restaurants, stores, etc. and do my socializing in very small groups, shop off-hours or go to restaurants with the senior citizens when it's nice and quiet
  10. Hello, I am looking for a few volunteers to help me with a couple of things. First, I write the meet the member column for this site and am looking for people who would like to be profiled. It's great to get your story out there and help to educate family, friends and others. You never know who you may help by telling your story :-) If you are interested in being profiled for the dinet newsletter, please send me a personal message. Second, I am working on an article for a children's magazine about what it is like for a teenager to live with POTS. I plan to profile a teen (or more than one) who suffers from POTS, explain what POTS/dysautonomia is and how it affects his/her life (friends, dating, school, etc.). I also plan to focus on what to do if you have a friend who suffers with a chronic illness. I am looking for anyone who may have a child who has POTS and would like his/her story told. This is a great opportunity to educate the younger generations! I will also be contacting dynakids.org but thought I'd check here as well. Thanks very much!!!!
  11. I recently purchased a pulse oximeter to check my oxygen levels when I am feeling that awful suffocating sensation I often get. So far, my levels have been good (around 98 or 99) but I did notice a drop to 87 when I let the dogs out and walked up the stairs (with some chest tightness). It rebounded back up quickly but does anyone now if that's normal? I am assuming it is because upon exertion, I am getting a bit less oxygen but I just thought I'd check with the dinet "expert panel"..... Anyone else have experience with this? Thanks!
  12. For those of you interested in learning more about mast cell activation disorder or mastocytosis, this video is fabulous - created by the mastocytosis society and has the top docs talking about the disorders.
  13. I certainly understand your hesitancy...I hate taking new drugs. But, I have been on a calcium channel blocker for over two years now and it's been the one drug that has helped me the most. The beta blockers put me in a perpetual brain fog and lowered my bp way too much as well as my heart rate (even at the tiny doses). The anti-arrythmics (I have afib and svt as well as POTS) started causing neuro issues. So, we resorted to a CCB and it's been fine. It doesn't completely control my symptoms, especially the afib stuff, but it does make the heartrate issues manageable. My bp can run low or high but on the low days it hasn't made it too low. I do, of course, still have days where nothing seems to help but overall I am happy with the CCB. Didn't cause any side effects for me......good luck!
  14. Hello, I currently write the "Meet the Members" column. I thought it would be nice to profile some of our gentleman members since we so often hear of women having this illness but can't forget the guys out there. I know there are a few on this forum who are very helpful and knowledgeable......anyone willing to volunteer for the next issue? If you are interested in volunteering, please send me a pm...thank you!
  15. Since I agree wholeheartedly with everything said above and they have all said it so well I'm just sending you a hug!! Annette
  16. Absolutely! It's something I've talked about many time.....I am much worse on a rainy, damp day...head pressure and dizziness knocks me down for the count. I believe the pressure is one reason POTS patients are advised not to fly....
  17. Hello, I have been taking cardizem (actually the generic diltiazem) for two years now. I have POTS as well as atrial fib, atrial tach and SVT. I was on Toprol (beta blocker) for several years but it drove my already low bp way too low and made my bradycardia episodes much worse so that had to go. I was also on the anti-arrythmic flecanide for a couple of years to help control the atrial arrythmias but that eventually caused neurological side effects so out the window that went as well. So, my cardio tried the diltiazem.....for me the side effects are much less than the beta blocker. I still have to watch my bp and low heartrate at times but it doesn't get nearly as bad as it did on the toprol. It does seem to control my POTS tachy pretty well. I do have breakthrough tachy and frequent breakthrough atrial arrythmias but it's easier for me to deal with those than go on yet another med to try to control it. Also, the brain fog for me is less on the cardizem than toprol...when I went off of the toprol, I couldn't believe how much clearer my mind was. So, for me, the cardizem works better than the beta blocker did....
  18. Just a word of caution about the cold water for those of you who have atrial arrythmias in addition to your POTS. Cold drinks can trigger those arrythmias caused by vagal stimulation (which I have a big problem with - if my vagal nerve gets stimulated, I lose rhythm - very inconvenient while going to the bathroom sometimes!). If I drink anything with ice in it, I will start to have afib or atrial tach episodes so I have to drink everything room temp. Not saying it will necessarily happen to everyone, but something to be cautious about.
  19. Hello, I have been tracking a pattern with my POTS for several months now and wanted to see if anyone else notices this. I had a hysterectomy a few years back (due to severe endometriosis) so I don't have periods but did keep an ovary so I do still have cyclical changes but I can't say for sure when or if I would have been on my period. I go through a just horrible time for a couple of weeks where everything is flared. Bowels are out of control - going either one way or another - horrible stomach pains, head pressure/dizziness is unbearable, chest tightness is awful, atrial arrythmias acting up very frequently, difficulty with bp and heartrate, etc. etc. etc. Then, things seem to settle for a week or so where I can function.....I can do some housework and even get out of the house for short errands, although I still wouldn't be able to walk through a large store or shop for a long period. But, I can function relatively well without debilitating symptoms. I can eat without pain or "consequences (if you know what I mean)". It's not a matter of stress being worse because the stress level is the same.....Then, powie, it starts over again. This has to be hormone related - my question is - has anyone ever had their hormones tested during a flare (I'm talking about female hormones)? Or has anyone been told anything clinical about this? I know so many of you say you feel worse when you are on your period - why is this? It seems like if we could supplement whatever hormone is lacking during this time, maybe the symptoms could be better controlled. On the converse however, if it's too much of a hormone, I have no idea how to fix that.....anyway, thoughts anyone?
  20. Hi Alicia, I have POTS as well as atrial tachycardia, atrial fibrillation and SVT. Mine is controlled to the point that the arrythmias happen in bursts and are not sustained for days. My cardiologist would not allow it to continue for two or three days as yours has...although atrial arrythmias are "benign" for the most part (although they make us feel horrible), if they are allowed to continue they can cause stroke. I'm not saying that's what you have going on or that you even have these types of arrythmias but it seems like it would be a good idea to get this checked out. It could be you are having large numbers of PVCs or PACs which also are "benign" but feel awful. Has your Dr. ever put you on a monitor? Not just for 24 hours but for a couple weeks or a month to really get a feel for what's going on? If this is something new for you and your heart has been irregular for this long, I would either go to the ER where they can do an EKG to document it and make sure all is well or call the Dr. and let him/her know. I can relate to how lousy it makes you feel....hope you can get this checked out and get some answers. Until you know for sure what is going on, you don't want to mess with it.
  21. I certainly can't say if it contributed to her death but the video was spot on and I'm grateful he did it. The fact that she was a celebrity can help get the word out (sad but true). God bless her and her family..thanks for sharing that link.
  22. thanks for posting that! So happy she finally got a diagnosis and treatment and the Dr. video was very good...
  23. I try to shower every day but if I'm not feeling well, the hair goes up in a ponytail and that's that. I usually shower later in the day or evening because like others I seem to feel better then. A shower chair helps for the times I need to sit down. Also, I try not to take really hot showers because heat is NOT my friend and I wash my hair without my arms being way over my head because that aggravates things as well. It's an adventure!! Don't feel bad though if you can't every day. If you're not out running marathons or digging ditches, you're probably not getting too dirty anyway!!
  24. Deb - you are definitely not a weird thing......!!! But, I know what you mean with our goofy symptoms making us feel weird Erik - thanks for the very thorough response. Makes sense......I am a bit concerned about MS I suppose. I have been having tingling and numbness off and on for a bit now and some eye pain and rapid eye movements as well. My daughter told me last night when I was talking to her that my eyes looked like they were a typewriter (I'm surprised her generation even knows what a manual typewriter is!) It never lasts very long....seems to straighten itself out. I've get so tired of trying to figure it all out. I've had several MRIs over the last ten years but my Dr. said that MS can be slow to manifest and they would have to watch it (especially because I'm also so darn dizzy all the time, even when my heartrate and bp seem ok). Most of the time when I get these new, wacko symptoms I just push through it and chalk it up to just what you said - the sympathetic stimulation....I guess time will tell...we'll see if it clears up or gets worse. Thanks again everyone!!
  25. Thanks for your responses.... No, I am not on midodrine...never have been...... Desperate Deb - sorry you're having this same strange symptom....I missed your post last week, although I probably wouldn't have responded because I wasn't having the symptom. It makes sense that it's a circulation thing, possibly blood pooling. It is worse when I go from sitting to standing and I know my blood pools badly when I sit (I look like a smurf!).....
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