imapumpkin

Thanks for the responses! Naomi - I am actually in the process of changing therapists. I have been seeing the same therapist for years and I don't feel like I'm making any progress anymore (she attributes almost everything to my anxiety and can't really grasp why i'm hyperaware and concerned with my health) and my therapist has been having a hard time helping me with cope with a chronic illness, constantly trying to convince me that I need "perspective" and I can't constantly have someone tell me "well at least you don't have cancer". As far as coping strategies, my psychiatrist got me started last summer with guided deep relaxation meditation CDs and there are some really helpful ones on youtube. They have helped me a lot with focusing my energy on the present and on being positive and they helped me cope with dealing with anxiety prior to my heart surgery in Jan. Another thing that was helpful was when someone told me to stop thinking of myself as a patient. It's hard because there are so many symptoms you can't help but feel like being sick takes up so much of your energy but I'm trying to focus on the possibility of maybe improving someday as something to look forward to. bebe - thanks for the book recommendation I will definitely check it out! and love the machiavelli reference.

Haven't been here in a while but I wanted to ask if anyone else has had a similar experience in terms of emotionally coping with POTS/dysautonomia and all the restrictions it puts on your life. Lately I've been trying really hard not to harp on wondering why I've been dealt a chronic medical condition that has completely changed my life and capabilities in the blink of an eye. I am trying to focus on all I can do to improve my situation and celebrating the little achievements I have...like being able to drive myself to the doctor's office, or be able to run an errand or go for a short walk. I don't want to feel sorry for myself and think of all things I can't do anymore, all the things I planned to do but won't be able to, and the fact that my neurologist told me last month to file for disability meaning she doesn't see this vastly improving in the next few years. I am trying to work in therapy through grieving the life WITHOUT a chronic medical condition that I always thought I would have but now I have to play the hand I've been dealt. Overall I'm doing all I can to proactively confront my POTS problems. However, there are certain times when I find it particularly difficult to not feel grief for the loss of a normal life. It ebbs and flows obviously and for the most part I think there's a time and place for it and I don't want it to be a constant presence. But I feel it the absolute most when I first wake up after sleeping through the night (I'd say when I wake up in the morning, but the truth is I go to bed very late and sleep into the afternoon). I have always been a very vivid dreamer and have always been able to recall my dreams upon waking up. I suspect that they are even more vivid because I have been on klonopin for a number of years and they make my dreams even more intense. I am wondering if anyone else experiences this: Waking up and feeling sad because I've just had a whole nights worth of very vivid dreams in which I am active, normal, and DON'T HAVE POTS. Then I slowly come to consciousness and I remember oh yeah. I can't do all those things I'm dreaming about...running, going on vacation to Disney World, swimming, doing anything for any amount of time without resting. I wake up and I feel sad because in my dreams, I'M NOT SICK. I wake up and go CRAP. It was just a dream. I don't think of myself as a sick person. I think of myself as a person with a chronic medical condition, and I lived 24 and a half years without any significant physical limitations so it's not who I am, I don't dream that I have these physical limitations that have sprung up since my POTS flared last summer. Does this sound familiar to anyone else? I told my therapist that this is one of the reasons I enjoy sleeping is because I am not sick in my dreams. She says this is what depressed people do, but the truth is, I don't sleep as a form of escapism, it's just a part of my 24 hour day that I get to feel like I'm not physically inhibited, and I don't sleep to avoid real life. I sleep a lot because I'm very fatigued but never do I wake up and go unnngghh I'm going back to sleep because it's better than this real life POTS filled day. I don't feel depressed. I just feel like I need to work through my feelings about the loss of a potentially full active life. Nobody plans to get any sort of medical condition or illness so I obviously had a life plan that did not include POTS and now I have to chart a different course so I think it's perfectly fair to be sad about new restrictions of my physical activity, my future and all my plans needing to be reworked.

Stairmaster is my FAVORITE cardio exercise. running has always made me feel terrible ( even years and years before POTS). I want to continue using it because when I'm healthy it makes me feel fantastic, but my POTS specialist neurologist wants me to stick with a recumbent bike because its better for circulation and you don't have to be upright. grrr i wish i could be upright.

I want to try the "exercise helps" approach and start building up my endurance again. Ultimately I want to be well enough to work, exercise, and drive long distances. I would like my life back. I know it doesn't happen easily, but I'm willing to exercise til the cows come home if it will help.

I have an appointment with my POTS neurologist next week and I know that she is going to want me to go on Florinef because that is what she suggested back in November when I had my TTT and she said that once my surgery was over and my valve fixed I would be able to take something like Florinef. The truth is, I don't necessarily want to go on Florinef. Don't get my wrong. I want very much to try what I can to see if I can get my POTS under control. However, I have been doing some online research on Florinef and I am really not liking what I'm reading. There are so many warnings, so many precautions (including not wanting to mix it with aspirin, which I have to take every day forever because of my heart surgery, and not wanting to mix it with estrogen and I am on birth control). I also didn't realize it was a corticosteroid. There are all kinds of warnings about how if you have depression or anxiety the drug can make it much worse and the girlfriend of one of my friends just suffered a complete corticosteroid-induced mental breakdown so I am very wary of them. Also, I just had major surgery 2 months ago and my body is still healing and recovering from major physical trauma. I really dont want to put my body through more trauma especially while it's still healing. I would like to wait and see how my stamina/energy/fatigue and POTS are once I'm no longer recovering and once I'm back to exercising. What have been some of your experiences with Florinef?

Love this =)

I am a grazer when it comes to eating, i eat constantly throughout the day of since my POTS flared up I've had two episodes (not nearly as severe as yours) where all food was completely off-putting to me and i literally was having to force myself to eat and even then it wasnt much. I have constant nausea which often makes me not that excited for food but once I start eating things seem to calm down. during these episodes though it's so bad that most food makes me gag, even my favorite things.

Smartwater/Owater. No sodium but its got electrolytes and helps return fluid without all the sugar and dyes that come in gatorade that upset your stomach/clean out your intestines.

I posted about this several months ago, don't be embarrassed. I don't have MCAS just POTS. It makes me too nervous a lot of the time to get intimate with my bf because my heartrate skyrockets and palpitates all over the place. Issie is right, stay hydrated and take things slow so your body has time to catch up with all the extra stimulation.

Thanks for the feedback! Altruism- Klonopin has helped with panic attacks. I can't tell so much with the SSRIs because they don't work as fast...klonopin kicks in about 20 min after taking it so you can feel its effects and it alleviating anxiety/attacks. When I started on benzos i was 17 and having panic attacks every few weeks. The klonopin has helped and with therapy and exercise and the SSRI I haven't had a full blown panic attack since college. Now the closest thing I get are periods of intense anxiety very rarely, maybe once or twice a year, that can only be described as all-over non-specific deep discomfort, uneasiness, the need to to the heck out of the place I'm in but no real physical symptoms just a general all over tweaky twitchy feeling. When I was having anxiety attacks as a teen it was tingling fingers, shortness of breath, depersonalization and the intense fear that I was somehow having a heart attack Spinner- I agree that klonopin can be extremely helpful and I believe it helped me get through a very difficult time and allowed me to go away to college and get my independence back from my anxiety...who knows now if it also might have been POTS? I'm not so much concerned that the drug itself is harming my body given my long term use of it, what concerns me is the fact that the longer someone is on it and the higher the dosage, the harder it is to come off of because of tolerance. Were I 10-15 years older I wouldn't think twice about just staying on it but since I want children eventually I'm going to need to be off it, at least for a while so I get nervous about withdrawals from going off it. My body is very sensitive to chemicals as many POTS patients are and I can tell even if I have missed a dose by a few hours. The stuff is potent!

I'm starting to feel like a big idiot/like I was mislead by my doctor. When I went on klonopin at age 17 I was a child--going through some family trauma and experiencing panic attacks and some agoraphobia, and who knows, it might have been related to POTS because anxiety and POTS so often overlap. I was young and naive and trusted my doctor and NOBODY told me that klonopin is only supposed to be taken for longer than 4 weeks for anxiety and after that it's considered long term use and exponentially increases a patients risk for tolerance and benzo withdrawal syndrome. I am 25 now. I have been on this drug for EIGHT years (albeit, for several of those years I was on a tiny dose of 1/4 of a .5mg pill daily) but still...I'm just now doing the research that is telling me long-term use of any benzos can be doing more harm than good. I'm scared. I'm reading all these articles about withdrawal symptoms lasting months-years and causing hallucinations, psychosis, seizures, suicidal thoughts and even death. I would never quit cold turkey, I absolutely intended at some point to wean off very gradually, but still, shouldn't a doctor tell you "Oh hey, I'm putting you on this drug that will help you now, but sc**w you over in the long run?" I'm still recovering from heart surgery and now I'm terrified at the prospect of having to put my body through more trauma. How many other people here have been on klonopin for a number of years? Klonopin seems to help me but I dont know how much of that is because I'm just feeding my head because I've built up a tolerance, how much is helping my POTS or how much I actually need it for anxiety since I am also on lexapro. I have no judgement whatsoever for being on klonopin because it helped me a great deal but in the future I would like to have babies and one cannot be on benzos while pregnant so I figure I might try and go off it while I'm already out of commission (no job, living at home with my mother). Blah. This makes me very nervous. What has been your experience with long-term use of this drug?

Interesting update...I've had a much easier time singing since my valve surgery. I am also on metoprolol now maybe that is related as well? but whereas before my surgery I could barely singing normally and certainly couldnt belt, I'm finding that I'm able to sing right along with my itunes again. I do get tired easily and my heart rate goes up, but it doesnt feel the same as before when I felt like I was running out of enough air to sing. At least one improvement =)

I've had many of the same symptoms. For 2 years I lived with POTS and was pretty much fully functioning and although everyone is different, here are some things that I have found and worked for me to help me feel better. The squiggles in vision and "visual snow" may be ocular migraines (migraine auras without the headaches). It is usually caused by decreased oxygen to the brain. Which valve is leaky, is it your mitral valve? In terms of frequent urination...been there. Try increasing your fluids containing electrolytes like Nuun tablets in water or SmartWater or Owater that contain electrolytes. I've experienced relief from so many BR trips and retain fluids much more when they contain electrolytes (although that does not include gatorade, that will likely irritate your stomach with all the sugar, dyes and flavoring.) If you are able, short bouts of exercise, for instance 15-20 min 3 times a week on a recumbent bike is good to to combat fatigue, but it you cant tolerate exercise fatigue is really tough. I would def recommend the POTS specialist I see, but I'm not sure what region you are located in. Good luck!

Thank goodness! Thank you for sharing your experience and your wife's experience. Always good to hear successful improvement stories.

"It weakens your heart." ...is that true? I've never heard/read/been told that. It's taxings and causes higher heart rate but since when does it weaken the muscle?

I've had General when I had my wisdom teeth out 6 years ago and all it did was make me nauseous after the fact (compounded by the blood that drains into the stomach during the extraction). I also just had a heart surgery 4 weeks ago of course requiring GA. I asked my POTS specialist (A neurologist at Boston Medical) what the surgeon and anesthesiologist should be told prior to surgery. She said just to make sure the surgeon and anesthesiologist know that you have dysautonomia specifying intermittent tachychardia and chronically low blood pressure . Thankfully, anesthesiologists are some of the few doctors who invariably are familiar with dysautonomia and will know to keep your son well hydrated and his pressure carefully monitored while under GA. GA was one of the aspects of my surgery that made me the most anxious because I know that POTS can complicate being under sedation. Fortunately I did not have any problems with the GA and my blood pressure only dropped in the OR when they tried to give me narcotics which I apparently can't tolerate. I don't think they will need multiple articles to convince them to be extra vigilant during your sons surgery, but here is an article someone posted on the site a few months ago: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3349351/pdf/nihms-311955.pdf If you do opt for local, be aware the novocaine is know to severely irritate the autonomic nervous system and cause serious tachycardia. I personally can't tolerate novocaine and have to have something called carvocaine instead. Good luck to you and your son!

Thanks everyone for the responses...The chest pain has gotten a little scary. My vitals signs are normal and my visiting nurse says my heart sounds great..my cardiologist two weeks ago seemed very pleased with my progress.Still, even before my valve was fixed doctors couldn't pinpoint what was causing the pain that really truly feels like its coming from my heart. It feels like a large needle passing right through the center...and all the visiting nurses and doctors say "call 911 if your chest feels squeezing, heavy or tight" but its extremely hard to tell if that's the case because my whole chest (sternum, ribs, clavicles and shoulders) is tight and sore because I had a mini-sternotomy and my breast bone is healing and my other muscular/skeletal pains come from deconditioning do to my activity and movement limitations and my extreme discomfort sleeping propped up flat on my back. This is one of those extra frustrating things about having a little known and obscure illness. I just wish someone in the medical community could give me a straight answer other than "it's the POTS." The vasoconstriction due to low blood volume makes sense and I hope that is what I am feeling. It just is such a drag (and provokes anxiety) knowing that as long as my POTS is active, I'm going to be looking over my shoulder so to speak and in some tiny portion of my brain worrying that my heart is in jeopardy. After all, everyone associates chest pain that radiates to the arm with a heart attack. I was told I have a strong heart muscle by a world renowned Cardiac Surgeon, I am young and have no blockages and I'm told that neither POTS nor MVP (esp a repaired one) are associated with any increased risk of heart attack, but my chest hurts like this and my anxiety level spikes. Especially after heart surgery. I've gotten neurotic about checking my vital signs. My pulse ox is usually 97-99, my bp has been decent and my HR is pretty consistently in the 90s. Still I worry that chest pain = heart attack and its hard to chill out and not worry because I think that if something ever were to REALLY go wrong, it would be like the boy who cried wolf, except its the chick who cried heart attack . Thanks again for the reassurances.

I know that a major symptom of POTS is chest pain and I've seen posts from many other people here who describe the exact same kind of pain I get in my chest. I've tried to research this question and ask my doctors, but no one can seem to answer the question, what it is about POTS/Dysautonomia that causes chest pain? My heart valve surgery was 4 weeks ago and I was told that any chest pain I had before my surgery should go away after my mitral valve was repaired, but I'm still getting chest pain which I know is most likely because of my POTS. Does anyone know/has anyone been told or read what about POTS would cause chest pain, particularly pain that feels like its coming right through the heart and often radiates to the arm? And why would it only be on the left side localized to around my heart so I'm constantly concerned that its a heart issue? One of the things I said before my surgery was "Lets get this fixed so I don't have to worry about my heart anymore" but the continued chest pain might make that impossible and I'm worried I'll always in the back of my mind wonder if my heart is actually healthy or whether its the POTS making trouble.

Three and a half weeks ago I had my mitral valve repair surgery. Because I am younger than the typical patient having this kind of surgery, my HR post-op was much higher than they were used to at the hospital so they started me on Metoprolol. I am not sure of the dosage they had me on at the hospital (Honestly they were giving me pills around the clock and I was in recovery so all I knew was I was getting it, fast acting, several times a day.) Standing, my heart rate was 120, but the cardiologist I met with said it was not uncommon for HR to go up as reaction to heart surgery, but they still kept a close watch on me and for the first few days I could get out of bed, a nurse would rush in every time I got up to use the bathroom asking "IS SHE OKAY?" and my mom would respond "Yeah, she's just got up to use the restroom." They sent me home from the hospital a week after surgery with a prescription for slow-release 100 mg dosage of Metoprolol to keep my heart rate down. As time went by and I started to heal and recover and my heart was going back to normal, my blood pressure started to stay consistently low. After my noon dose of the beta blocker my BP would drop and I couldn't get my pressure above 85/50 and I felt like a bowl of jello with no strength to try and rebuild my stamina by walking which is something I really need to do for my recovery. Last week I had my post-op follow-up visit with my cardiologist. I told him about the low BP and he promptly cut my 100 mg dose to a 50 mg dose and said "You're on kind of a big persons dose...you're kind of a little person" (I am 5'1'' and weigh 101 pounds post surgery). The meds adjustment seemed to help for several days but now I feel like I'm continuing to heal and while my HR seems to be doing wonderfully, staying between 72-86 at rest which is unheard of for me since my POTS flare up, I can't seem to get my BP above 95/55 and I'm feeling weak and shaky and like a bowl of Jello again. None of the normal things I usually do to raise my pressure are working (increased salt, drinking lots of smartwater, moving around and doing leg contractions). Before my surgery my BP was consistently between 95/65-110/70. The entire week I was in the hospital almost every single BP reading done round the clock was 100/60. Now I can't do better than 95/50. Should I be asking my doctor to lower my dosage again? 50 mg of a beta blocker is still pretty high. When my neurologist started me on propranolol (failed experiment; bad reaction) in October it was only 10 mg a day and I'm sensitive to medicines. If my body is healing and my heart going back to normal (ish) do I need such a high dose of a beta blocker? Any words or wisdom would be appreciated.

I have been on lexapro since I was 17 for anxiety (I'm 25 now). I know everyone is different, but I feel like that is not a normal reaction, meaning, it might not be the right SSRI for you. Yes everyone reacts differently but I have never heard of someone needing to "get used" to the SSRI and needing to wait for the side effects to wear off. If your body is reacting that way perhaps you need a different SSRI. Before I started the Lexapro my doctor had me on Celexa and I had a terrible reaction to it...nausea, heightened anxiety, claminess, shakiness; I wound up in the ER because I was dizzy, sick to my stomach, and short of breath. My doctor took me off celexa and started lexapro which my body likes a lot better...but only if it is the name brand. The generic brand gives me nausea and stomach pain. When I told me doctor this he immediately wrote a "no substitutions" note on my next script.This is just my experience, but my doctor doesn't think a person should have to deal with side effects like that from an SSRI. Talk to your doctor, you shouldn't have to feel worse to try and feel better.

I've had trace blood in my urine for years and have been seeing a urologist since I was 19 or 20. I also saw a nephrologist who found no reason for the trace blood and my urologist has done multiple ultrasounds, urine analysis tests and even looked inside my bladder with one of those fun scopes that hurts really bad. Still haven't found a cause. I've always wondered about it, but I'm glad I'm not the only one!

Def Dr. Anna Hohler at Boston Medical she is wonderful but call ASAP because the wait list is long.

A LOT. Typically once every 1-2 hours during the day then once or twice in the night on good days, some times once every 40 min on bad days. I know i've been preaching this high and low across this board but SMARTWATER has been a total godsend when it comes to frequent urination. not even prescription vesicare for overactive bladder helps like drinking smart water. Its expensive but it is has magnesium potasium and calcium chloride electrolytes and for some reason it is the ONLY fluid (besides Owater which is the same thing only cheaper and not made by glaceau) that my body actually retains and I am able to go hours longer without trips to the bathroom. I highly recommend it!

POTS is a neurological condition because it is a dysfunction of the parasympathetic nervous system. It is a secondary condition-- meaning that it manifests as cardio and in the cardiovascular system but the underlying causes are most often neurological or inherited. My POTS specialist says POTS is not cause, it's a symptom...meaning your cause could be any number of things (viral onset, pregnancy/childbirth onset, trauma onset etc) and the syndrome, the collection of symptoms, are symptoms of the underlying cause. Also, we are not nec at a higher risk during flu season, but for a lot of us, viruses hit much harder because of the POTS because we have compromised immune systems. If you put a POTS person in a public place like the mall or a doctors office we are no more likely to contract the flu from an infected person than a non-POTS person, it just might **** way more for us, especially this year since the strain is particularly bad this season.

When my flare was extra bad this fall I was saying "I'm sorry" all the time...especially to my mother and my boyfriend who have shouldered most of my care-giving. I told my psychiatrist (who prescribes my anxiety meds) and he told me I am no longer allowed to say "Im sorry" regarding me health issues. Sometimes I need reminding and my boyfriend has to say "you're not allowed to say that". I suppose the family and loved ones who take care of us and are kind and patient with our conditions know that it's not our fault and we have nothing to be sorry for. Of course, that doesnt stop us from feeling guilty or like a burden. I guess its all about finding a balance, but I would say "I'm sorry" every once in a while just to let loved ones know you appreciate their help, but not too often.