imapumpkin

Really interesting! Too bad it also dilates blood vessels which is not helpful POTSwise.

Katybug- I haven't had an MRI since the surgery although I did have one in early dec. I have mentioned the auras to my primary care dr, my visiting nurses and and contacted my neurologist/POTS specialist (whom I have not heard back from yet) but none of them seem immediately concerned and my PCP merely recommends following up with my neurologist. I'm seeing my cardiologist next week who I hope will be more familiar with this symptom following heart surgery.

AllAboutPeace- I've been told 3 months of recovery, but that is the long end. I can't lift more than ten pounds because my breastbone needs to heal, or raise my arms above my head (washing my hair has become a unique challenge) no driving for 6 weeks... but getting back stamina and getting back up to my healthy weight. anaphylaxing- I had a valve repair thank goodness. they said they wouldn't be able to tell until the surgery if they could repair it or if it would need a bioprosthetic replacement but luckily my wonderful surgeon was able to repair the valve so hope that means no further surgeries (replacements require further replacements in future years) and no warfarin (thank goodness). An unexpected side effect of the surgery has been very frequent ocular migraines (migraine auras that last 30 min and do not precede a migraine headache) but my vision gets totally distorted every other day sometimes 2-3 times a day. It's concerning, esp since I really want to be able to drive when I am healed.

Not everyone faints and sometimes if they see you are in distress and close to fainting, they will stop the test and bring you back down esp if you have such a dramatic reaction they really don't need more than a few minutes recorded data to diagnose.. Make sure you are very well hydrated beforehand! It's not a fun test and makes you feel pretty lousy during and after, but its better to know and have the official diagnosis than to never have tried? Good luck!

Hi everyone, thank you so much or the positive vibes, good thoughts, prayers and well wishes. I'm finally home from the hospital and my mitral valve was successfully repaired. I am truly thankful to have had such a great surgeon and a wonderful nursing and support staff during my stay. I had prepared myself for the surgery itself but I had no idea what I was in for recovery-wise and I've got about 3 months of recovery ahead of me but things are looking positive. I'm having thoughts like "i can't believe that happened to me..i can't believe i had heart surgery a week ago at 25" and i'm working through the trauma of it and now the recovery but hopefully the hardest part is behind me. Fun fact about my POTS and surgery: Turns out I can't tolerate any narcotics. The only pain meds I'm allowed are motrin and tylenol. yowch. the hospital also had to put me on metoprolol because my post-op HR has been very high and I am actually tolerating metoprolol after failing at the propranolol. its also really hard to tell what is POTS chest pain and what is post-op heart pain. I will keep everyone here updated on how the valve repair affects my POTS. Again, thank you so much to everyone for all the good wishes.

I have been noticing this lately too! my shedding in the shower has gotten much more noticeable in the past few weeks. I was chalking it up to stress. I have very thick hair and it still feels thick, but I wonder if it might be a vitamin d deficiency because I've also been noticing vertical ridges on my fingernails that are much more pronounced than usual. As for the clonazapam, I've been on that since I was 17 so...8ish years on the stuff without any problems, and I have been on my current dosage since Sept and only have just noticed the shedding in the past month/month and a half so I don't think that its the klonopin but it affects everyone differently.

SMARTWATER!!! (Or OWater, which is essentially the same, but cheaper) Smartwater has been a godsend for me. My neurologist recommended Nuun tabs but they are expensive and none of the flavors look appealing...particularly since I've always been a water girl to begin with, not into sodas and no needing flavor with my hydration. Gatorade literally runs right through me and the sugar in it upsets my stomach and does weird things to my intestinal tract. For whatever reason, my body does not absorb or retain regular water or any other fluid so before I knew I had POTS my urologist just thought I had overactive bladder because I would have to pee every 40 min to an hour, but miraculously, the electrolytes in Smartwater and Owater help me retain the fluid. So I get to drink water, but also get the electrolytes. It doesn't have sodium in it, so I try to up my sodium elsewhere, but there is a huge marked difference in my blood pressure readings after I drink from my SmartWater bottle. It's crazy. If it works for me maybe it will work for you? Good luck!

Thank you all so much for your kind words and your well wishes. It means a great deal to me that you are keeping me in your thoughts and I so appreciate all the support, and that you remembered the date of my surgery. Due to two of my surgeon's patients needing emergency operations in the next 48 hours, my hospital called and had to bump my surgery to Monday. I completely understand that these patients need to be moved to the front of the line. I just did not expect to have 4 more days of very acute stress and anxiety ahead of me as I have been steeling and preparing myself to go under tomorrow...we were a mere 3 hours away from leaving for the city when I got the call. I had hoped that by this time tomorrow I might be on the healing side of this operation rather than the waiting and anticipation side, but things like this happen. I want to thank you all again for thoughts, it means a lot.

Hi Jen, I've been noticing this happening to me lately too, even if I'm flat on my back and putting no pressure on either of my arms, it's very strange. for some weird reason, i get the most relief if I curl into the fetal position and curl my arms to my chest as though i am sleeping with a stuffed animal under my arm. sometimes i clutch a small blanket or a sweatshirt under my curled arms and they won't fall asleep and it seems to be helping.

Thanks for the responses! I don't get syncope with my POTS...I've had pre-syncope, so can my doctor still report that fainting is a possibility?

This past Thurs I had to see a hematologist for my von Willebrande's disease prior to my surgery. I knew they would obviously need to draw blood, but I did not know how much. However, I noticed the phlebotomist was pulling out a ton of vials and printing out several labels. The following ensued: Me: "uhhh...how many vials is that?" Tech: "Six........No. Nine." Me: "NINE???!!!!...That's a lot, I hope I don't pass out..." Tech: "I hope not either." Me: "I have low blood volume. It's not a needle fear thing...it's a low blood volume thing" Tech: *no response whatsoever* She takes the blood. I am expecting to feel like total cr*p during and after. She finishes drawing blood and I only feel slightly lightheaded and a little weak. I have felt worse with only 5 vials. She gets me juice. My mother brings me my smartwater. I drink up and within ten min I am okay to go. This is astonishing as I was not very well hydrated and I had only eaten a bagel so far that day. I take three naps in total that day. The problem is, ever since then my energy level which has been semi-decent lately is in the toilet again. My blood pressure seems to be staying around 114/70 during the day, but I still feel useless. I sleep 9-10 hours. I wake up and feel tired all day. I nap. I meditate, I fall asleep. I am taking Iron pills because I was borderline anemic in october/nov. I have been eating protein (including drinking milkshakes with muscle milk powder in it) but I still feel like a wrung out washcloth. My surgery is on Thurs. They are going to be taking blood from me every day for 5-7 days of in-hospital recovery. I don't know how they deal with a person who has low blood volume from dysautonomia. Does anyone else have a lot of trouble after getting bloodwork done? How do you help yourself recover and is there something I could be eating/taking (i.e STEAK) to help me recover from them taking 9 vials of my already depleted blood supply?

Hi everyone. I just got my 3rd jury duty summons in a year and a half . For the first one they had everyone call the day before and the courthouse told my group not to come in, so instead of that fulfilling my once every three years obligation, they threw me back in the shuffle. In the fall of last year I was summoned again, and I had to get a doctors note from my urologist because (unbeknownst to me at the time) POTS was causing overactive bladder even with medication so there was no way I could be "that girl" who has to keep getting up to pee every hour in the middle of a trial. That was before my POTS really kicked in and flared up this summer. Now that I've been summoned again I know I can't serve on a jury because I am so fatigued and nauseous all the time. I will technically also be recovering from my valve repair surgery on my summons date. My question is, how do you handle medical excuses with POTS? No one knows what POTS is outside the medical community. Which doctor should I have write a doctors note? My PCP, Dysautonomia Neurologist Specialist and Cardiologist have all been following my case. The summons says that if your doctor thinks your situation might be permanent they can say so in the doctors note...but there's really no telling if POTS *is* permanent, and I don't want them to think I'm going around to all my different doctors coming up with a different medical excuse each time not to fulfill my "civic obligation". But the fact of the matter is, I am not well enough to work, not even a sedentary job, and according to the rules that makes me not well enough the serve on the jury...the problem is I haven't filed for disability or anything so it hasn't been documented anywhere other than at my doctors visits that I am as incapacitated as I am. Any suggestions?

10 mg of propranolol is a very low dosage to begin with. I was on it for 2 weeks and it really helped my energy level, but I had to go off it because it was giving me increased low blood sugar and parasthesias. I also could tell when I needed another dose because my hr would noticeably go up. My only advice would be not to mess around with the dosages and to take it as the dr suggests. If you are not comfortable taking it at all, then by all means you can refuse the medication, but beta blockers are serious business and you have to taper off them and the dosage should be consistent until you are ready to taper off. Why not discuss your concerns with your cardiologist? I'm sure he would be willing to discuss your concerns and poss side effects. Good luck!

Hi Sarah. I totally get where you are coming from, I absolutely am acutely afraid of sudden death, esp because of cardiac symptoms. I have always been extremely hyper-aware of my body and health and because of all my health issues its like I'm constantly waiting for the other shoe to drop. Constant chest pain does not help quell these fears. I think what we're feeling is mostly normal given that being chronically ill is stressful and draining and traumatic. I also agree that it's frustrating when someone says "go to your happy place" because obviously if it were that easy, if we could find some sort of peace with our fears on our own just be thinking of something positive, we wouldn't be seeking professional health in the first place >_< Something that has helped me a lot ( although it has not eliminated my poor health/dying fears because I think I'm always going to be a compulsive worrier, esp about health) but has helped distract me and given me a little bit more positive energy is guided relaxation meditation. I can't do regular meditation because I just fell asleep, but they have lots of CDs and even exercises on youtube that are great for relieving stress. I I've been doing them like crazy since I found out about my heart surgery which is only a week away (talk about serious fears!) but the deep relaxation meditation has been surprisingly helpful with my anxieties. Here is one that temporarily gives me relief from my health anxieties: hope it helps or that you are about to find a therapist who isn't so dismissive and can help you work through the fear. You're not alone.

Totally agree with you on this one. It's not just around the holidays, its kind of all the time. If ever anyone complains about trivial stuff on fb or social media I get frustrated and what to post back "Want to trade?". I know eventually I have to get over that well people will never quite get or appreciate their health but when I'm feeling really sick and potsy I don't want to hear about someone complaining about not getting good wifi or something. I know you can't blame well people for taking health for granted, but I wish people would keep things in perspective.

Hi Kim, Sorry you are dealing with. After fatigue I think chest pain is the most distressing POTS symptom. I agree with everyone who suggested you get it checked out for your own peace of mind but chances are its just POTS being awful and inconvenient. I get chest pain almost every day and some days its very bad and causes me a lot of anxiety because we are all trained to think chest pain = heart attack. Ibuprofen doesn't seem to help and when I went to the ER for chest pain before I knew I was having a POTS flare up, none of the pain meds they gave me helped, not even morphine. Weirdly, going to a physical therapist does often reduce how often I get chest pain. She tapes back my shoulder so I'm not so hunched and clenched with anxiety which makes chest pain worse. Hope your insurance kicks in soon!

Hello everyone. Because of my POTS i have some delayed gastric emptying (only about six minutes) and have a low baseline of nausea that I have dealt with each day for a few years. Nothing too bad, annoying, inconvenient, but manageable. However, ever since Thanksgiving I have been unable to keep weight on. I am petite, only 5'1'' but my weight when I'm healthy is usually between 106-108. Ever since my POTS flare up it's been at a steady 103. However, after thanksgiving (two days after learning I will be having heart surgery) I have been totally unable to keep weight on and i am struggling to keep things above 101. I know that doesn't seem like much of a loss but I don't have a ton of weight to spare. I feel like I can physically feel the skin stretching over my hipbones which stick out when my weight is down, and I have little to no appetite. I am wondering if this could be stress from my upcoming surgery (just two weeks to go...) but I also have an intense gnawing, squeezing sensation in my stomach that makes eating really unpleasant. I usually have a health appetite and "graze" all day long...small meals are best... but now I'm having to physically force down cheeseburgers for the beef and having too put nasty Muscle Milk into milkshakes...I'm actually sick of milkshakes, i never thought i'd see the day. Finally, I just switch my PCP because my old office was run like a factory, my doctors nurse thinks I'm a hypochondriac and my doctor herself kept forgetting I have POTS and felt no obligation to find anything out about the condition. My new doctor is very good and is a former ER doctor, so he is familiar with lots of complicated illnesses. I told him about the weight thing and he went right for the gastric emptying as the cause and prescribed Reglan/Metoclopramide...4x a day and I am very sensitive to medication. After reading the black box warning (!?!?!??!?!??!?!) and seeing all the responses on this forum saying either that people found it ineffective or else the side effects were too great or risky, I am extremely hesitant to use the Reglan. I only have two weeks until my surgery and Christmas in between and I really don't want to spend it dealing with possible bad news bears side effects of this drug that, when I google it, one of the first links to pop up is a lawyer/lawsuit site. The truth is I really don't want to take it now that I know all this information. If it is a question of calming my nausea and getting me to be able to eat more I'd much prefer zofran, which I asked him about but he said it wouldnt' address the gastric emptying. I don't know. I hate the horrible gnawing sensation and having to force down food (It doesn't help also that I'm using Periogard, an antimicrobial mouth wash to clear up my gingivitis which completely warps my taste buds so all food tastes nasty anyway) and feel nauseous after eating it but I am extremely concerned about this drug. I know that my mother is going to tell me to "stop second guessing my doctor" like she always does and try and intimidate me into taking it, but I am an adult and my gut (ha) is telling me this is not a good drug for me. Can I call up my doctor and say "Now that I've done a littler research, i REALLY don't want to take this kind?"

I was on loestrin (wicked expensive!)/microgestin (the generic form) from April until October during which time my regular bc Aviane was back-ordered and not easily available to my pharmacy. it made my tachycardia worse and super upset my stomach EVERY day. it stopped by period altogether over the summer (I wasn't trying to stop my period, it just happened) but my experience with it is was not good at all and have had much better luck now that I am back on the Aviane which helps prevent anemia from my vWBs.

Thanks everyone for your kind words. I just need to stop letting this and other stresses effect me so badly physically. Ever since I received the message I've been feeling totally drained (more so than usual) and like my nerves are shot. i'm trying to do relaxation techniques and find distractions but emotional stuff and stress just totally is messing with my body.

I have just been unceremoniously dumped by a friend who I've been close to for six years because he says he "can't be there for me as a friend or for support" and that its time i take responsibility for my health and actions and he feels to guilty is too stressed to deal with my health issues. This young man is a med student in Poland. Med students I realize are under lots of pressure, but he would always ask me about my health stuff and would use it to sharpen his medical knowledge. He also attends medical school in Europe, so I only speak with him every few months so it is not as thought I am overburdening him with my medical woes. He then stated that after 6 years of friendship the whole time he had only been using me by trying to be friends with me "for one reason" (I'm sure you can all guess so I won't say it, although he and I were strictly platonic) and then he blocked me on facebook. I am totally devestated. I can't imagine what I ever ever did to deserve being dropped from a friendship because of my health 3 weeks before heart surgery. (Needless to say when I read his final message, my heart rate shot to a whopping 155bpm...not healthy or helpful for someone with POTS and a heart condition.) I just don't know what to do. I can't imagine ever abandoning someone because they are in poor health. I feel like this was exceptionally cruel and that he could have just blocked me and not said anything.

Weirdly enough, anything by Fall Out Boy Kyrie - Mr. Mister More - Usher She Drives Me Crazy - Fine Young Cannibals Bad Romance - Lady Gaga When Doves Cry - Prince Basically most upbeat 80s jams get my blood pumping...van halen. def leppard. europe.

Hi, I really need to vent. There are two things on my mind. 1) does anyone else here have von Willebrande's disease? I have type 1, the mildest kind and it really gives me no trouble other than the occasional little cut that bleeds for an hour. I have had to take DDAVP when I had my wisdom teeth out, but mainly I don't see it as a problem. It occurs to me that having vWD might make my POTS even worse given that POTS gives us the low blood volume and vWD makes the blood even thinner so the volume probably gets even lower. Anyone else notice a connection like that? Anyways, as I said, I find my vWD to be not a big deal, I usually forget to mention it to doctors because its so mild and frankly, I have bigger problem that occupy my brain during medical visits. However, as I have shared before on this forum, I need to have heart valve surgery in a few weeks, which brings me to 2) The hospital where I will be having the operation tells me they need medical documentation of the labs that diagnosed my vWB and that they can't "just take my word for it". I'm sorry...what? I was clinically diagnosed with this by my pediatrician at age 16...I'm 25 now. It's in my medical records. They need me to meet with a hematologist and told me they might need to do a test run of of DDAVP to see if I tolerate it. I told them about having the test run AND an having the infusion of DDAVP before I had my wisdom teeth out at 19 but they still said they can't just take my word for it and are insisting on medical documentation that I've had DDAVP before and tolerate it. I think I would remember DDAVP. Had it twice. Do they really think I go around making up blood clotting disorders and pretending I have them? I don't have Munchaussens, I get no pleasure from seeking attention medical or otherwise. DDAVP is not pleasant, in fact it makes my whole body cramp like a motherfather, why would I be making this up? I understand they want to cover all their bases and make sure my blood is properly evaluated before having surgery, but the fact that they're acting like they actually don't believe I have this disease seems totally absurd to me. I also told them I have POTS but they didn't insist I send them the results of my TTT to prove it. I feel like this happens all the time, esp to POTS patients. Doctors don't think we have any medical knowledge whatsoever. They also don't trust that we know our own bodies. It's just so frustrating to feel like what you are telling medical professionals into whose hands you are entrusting your care and health is falling on deaf ears. Sorry, just had to get that out there. Has anyone else had a doctor tell them they don't believe you have something that you've been clinically diagnosed with? I'm sure POTS is a big one...

Has anyone else experienced tachycardia simply from waking up? Very frequently if I am awakened by anything other than my own body deciding it's done being unconscious my heart goes nuts and I won't even have moved or had my first conscious thought of the day. Getting woken up always feels like I've been startled. If my phone buzzes or the house phone rings or someone wakes me up I feel like someone has just jumped out at me and screamed BOO!!!!! and scared me into a pounding heart. Often I'll have a heart rate of 90-100 just laying in bed after a long sleep. Does this happen to anyone else? It freaks me out.

I can only guess about this, since my doctors can only guess about it at this point, but I feel cardiac issues and POTS are related. POTS doesn't cause cardiac issues other than tachy and chest pain as you said, but I am told that my mitral valve prolapse could be making my POTS much worse and my POTS could in turn be making my MVP worse (extra stress on the heart from all the tachycardia and stress in general about being sick). I will be having surgery to repair the valve next month and both my cardiologists and one of the country's top surgeon's who I had a consult with (but who will not be operating on me) said that they believe my POTS will get better after the valve is repaired. I will report back to the forum after the surgery and say how the repair affected or did not affect my POTS. That being said, I have to say that looking back, my first clues to having POTS directly coincided with my discovery of my MVP. I doubt they would have found the MVP had I not had chest pains that I'm sure were caused by the POTS, which may be caused by the MVP. yowza i'm dizzy. Anyway... my POTS hit it's worst in the past 5 months, and my MVP which til last March was under control went from A-OKAY to YOU NEED HEART SURGERY, so I can't help but think they are connected somehow. I also did not have a pronounced murmur until my POTS got much worse. It sounds like a chicken or the egg situation, but in this case, I'm fairly sure that my cardiac issues are contributing to my POTS.

Not nec for sleeping. My doctor also specifically said to hand wash them. The package says to machine wash, but my specialist says that machine wash will cause them to lose elasticity. I have three pair that I rotate so they will not get too much use. As to your other inquiry--That's a tough question. It's would be next to impossible to rule out every possible cause of symptoms unless you basically did every medical test under the sun, so it might be wasted energy to be trying to diagnose yourself before ruling out the mostly likely causes. It's really difficult to pinpoint how POTS starts and you might have gotten it after a virus and just didn't realize it...I went years without realizing I had POTS until it flared up. POTS can manifest after a physical or emotional trauma. It can also be genetic, so you might try to work with a specialist to isolate the cause of your suspected POTS so as to treat the cause because POTS is a secondary condition, not the illness itself. Good luck!