Eli6596

I am over 40 and take continuous alesse. My life was miserable before and during periods with worsening of POTS, so I will take the small increased risk of stroke on BCP. I certainly can't take another pregnancy. My GYN says I don't ever need to have a period. I don't have any breakthrough bleeding at all. I know the local GYNs will recommend having a period if breakthrough bleeding occurs. I have not stop alesse in years to have a menses. I would have to miss work to do it. Karyn

My cardiologist prescribed it for me and never recommended an EKG while on it. Some doctors are more cautious than others. It might just be a difference in practice style. It did not help me but everyone is different. Good luck, Karyn

Without desaturations on a sleep study, I would not worry that we are awakening like a sleep apnea patient does to breath. I have the hyperadrenergic POTS and have too high norepinephrine levels. Our bodies are constantly thinking that we need to be in fight or flight. This mode seems intuitively to be in direct opposition to sleeping. I think we cannot control our bad body as well at night when we cannot drink fluids while asleep, and after the midodrine has worn off. Therefore, maybe the high levels of adrenaline at night are interfering with sleep? This is all just speculation but it makes sense intuitively. I hate to bring up the insurance angle of this. However, without desaturations I doubt that any insurance would cover the very high cost of CPAP. Also, getting used to the CPAP mask can be difficult for many people. Consider asking your doctor about a low dose of melatonin. If you don't have desaturations at night on the sleep study, do we really need to be afraid of breathing cessation with a sleeping pill? Someone brought up this thought. I cannot remember who it was. Share your concern with your doctor. I suspect that it would be an unneccesary concern. Karyn

Tearose, Nearly four years ago, I moved to another state to practice neurology. I stopped taking call. I stopped all hospital work. I only perform outpatient work. For a physician, that is a HUGE amount of work to give up. I make less than half of the money that I would normally make but my health is soooo much more important than money. I did not feel that I could safely take call anymore. Call involved working weekends and driving into the hospital at anytime day or night (3am for example and still work the next day). It disrupted my sleep and was a total nightmare in combinations with POTS. I was in a private practice with 4 other neurologists 4 years ago. They said that I broke my contract because I could not perform all of my job functions anymore. They did not care that the reason was medical illness. A few of them made fun of me when I would lie down on a couch between seeing patients. They would roll their eyes. They would tell me what a hardship my inability to perform my usual functions was to THEM. I am SO happy that they eventually told me to leave. They gave me 6 months to find another job but no severance pay. Getting out of that toxic environment was one of the best things I ever did! The biggest thing is to find an employer who accepts your illness and VALUES what you CAN do. For me, everything else fell into place. I do work part-time. Part-time as a physician is like a fulltime job in most other circles though. I work 9am to 5 or 6pm usually. I see a new patient in one hour instead of 45 minutes. I see a followup patient in 30 or 20 minutes instead of 15 minutes so that I am not rushed and stressed. I am very lucky that tons of medication allows me to do this despite what Dr. Low calls a severe case of POTS. Working the same schedule everyday is helpful. I make sure that I do not skip meals. I have a recliner that I can lie down in when I have a bad day. From working at my previous job with POTS, I knew what I could do, and hunted for a job that would allow that. When you start working if you are not sure what you are capable of, it might be better to underestimate what you can do when discussing your responsibilities, rather than overestimate. If you do more than they expect, your employer will be happy. If you do less than expected they will be dissatisfied. If I have to do something at work or home that I know will task my energy, I schedule one day of vacation afterwards to recover. It is better to take scheduled vacation than an unscheduled sick day. I also watch carefully how much I do outside of work. I lie in bed after work at night, and on the weekends to have energy for a work week. I have no social life whatsoever. It would take too much energy. I say no often when asked to do optional things at my childrens' schools. I find that people at my kids' schools don't really understand that I cannot do everything that they ask. I am learning that I cannot waste my energy on trying to convince them that I am ill. My husband stays at home with the kids (11 and 5 years) which helps a lot. I let him do the laundry. When I grocery shop, I sometimes use a scooter and ask my 11 year old to push the big cart in which to fit the groceries. I just learned of a grocery in town that will deliver groceries. I cannot clean the house without having a huge relapse. I feel guilty to admit it but I do pay someone to clean the house once a month. I look at my energy level in a planned, scientific way. I try to conserve my energy by not wasting it on unimportant things (cleaning, getting upset) so that I can have it for important things (work, children). Well, the above are my tricks to working. Hope this helps you. The biggest trick has been to find a good combination of pills, and lots of them!!! When I went off my pills for the tilt table test at Mayo I passed out in less than a minute. I know that I would be bedbound without the all the pills. I thank God for what I can do. I know that things could be a lot worse. I am always interested in learning new ideas from others of how to navigate the world with POTS. I certainly don't have everything figured out. I struggle everyday. I am pushing myself to my limits. ONe little extra activity (going to my daughter's volleyball game on a weeknight) can push me over the edge. Karyn

Wow, you REALLY did get quite the workup! I am glad you don't feel guilty-selfish. Fine tuning our health to the best that it can be ends up helping others too. If we have better health, our families benefit. If you are able to rejoin the workforce, others outside your family will benefit from your contributions. So, in the long run, improving your health is not really self centered. I am glad that you will let prospective employers know of the need for accomodations. When I was searching for a new job four years ago, I was very upfront about what I can do and what I cannot do. I made it clear that I do not have a degenerative disease. By being up front before being hired, we make sure that we WEED OUT the people who would not value us, and probably give us heartache due to our illness. We don't need THEM. Out of dozens of prospective jobs, I only found three that would accept me in the area of the U.S. that I want to work. I was hired by a group with whom I was totally upfront. Since my hire nearly four years ago, they have continued to be understanding. They have been open to my ideas of small additional accomodations as well. For example, my nurse and exam rooms are located so that I don't have to walk too far from my desk. I have never had to fight with anyone about health related issues at my office. I hope you will have an understanding employer too. They do exist but we have to dig for them. Karyn

Hi I am so glad to hear that you had a productive trip. If you are like me, it is sooo draining to travel and then undergo so many tests. I always enjoy reading your posts. Which doctors did you see at Mayo? I saw Dr. Low but it has been years since I returned due to the time, hassle physically and cost. My cognition is not what it used to be either. A good night's sleep is hard to get for me too. Sleep seems to be the key to a good POTS day and good for cognition for me too. So much more research needs to be done. I get the feeling that you might have felt hesitant to use the word disability? I have felt the same way even though I clearly know that I am physically limited. When I am in my routine life, I deal with the limitations pretty well except during a cold or flu. When I travel to a meeting out of state like I did last weekend, it becomes glaringly obvious that I have big, big limitations. There is nothing like a huge airport to make me feel inadequate physically and so dependent on others! I hope the "tweaking" makes you feel so much better physically. For me that usually makes me feel better emotionally too. Karyn

Hi, I have been where you are now emotionally. It took me awhile to get to acceptance. I had to cut back at work dramatically, and try a lot of medications before things finally stabilized. When I stopped hoping for a return to normal health, I was able to accept my situation much easier. If you have young children, I found, "Cereal for Dinner" helpful. Karyn

It feels like a betrayal when someone that we think cares about us is so clueless. I would not waste my time or energy trying to make her understand. I think that if she could understand, she would have "gotton it" by now. She is naive to think that everyone's illness is just like hers so that a good attitude and willpower will cure us all. If our bodies would just be so obedient!!! Even family who love us sometimes find it difficult to understand our illness. I would not continue in this relationship that saps your energy from things that truely deserve your energy....like positive endeavors. There is really only one other person in my world who understands what I endure outside of this forum. She continues to struggle with arthritis which started in her 20's and orthostatic intolerance. She has guided me so many mental struggles. When I told her that I feel badly when people stare at me when I use the disabled spot, she said "What do you care what people think? You know, and that is what is important" With a true caring friend, you should not have to explain/defend your actions as you are doing. The friendship should not wound you emotionally. It should uplift you. Lots of hugs, Karyn

I like the thermacare idea. I might have to try that. I got the fever, vomiting, diarrrhea bug yesterday. I missed work again today. I am lying in bed with my computer on my lap. I would cry except that I know it will just make me feel worse. Karyn

I don't notice a difference between white and brown rice as far as energy level. Maybe your brand of brown rice had more sugars or carbohydrate content in it? Karyn

Oh my gosh, I had the same problem with the big white round 10mg mestinon tablets too. There was another post not too long ago about this pill causing problems. I switched back to two of the 5mg tablets. I swallow two of the 5mg tablets at once without problem. They are chaulky though, like the 10mg. I can swallow pills better with milk than water. The milk hides the taste too. Karyn

Could the vomiting be a side effect of a myasthenia gravis medication? If you have not already seen a gastroenterologist (GI doctor), I would recommend asking your primary doctor about a referral. Karyn

A nice long hot bath is the only thing that warms up my hands and feet when they get really cold. Sometimes I take a hot bath just to get warmed up. I have fallen asleep in the bath before! I periodically add more hot water because I stay in there for an hour sometimes. Be careful when you stand up to get out of the tub though. Karyn

When I was a teenager I passed out and fell backwards "like a tree" according to bystanders. I landed on the back of my head too. I just had a bad headache and dizziness for awhile. I doubt that would have killed her even without the weave. I saw that episode too. I think they took it seriously but most times when people pass out, others laugh and think it is funny. Perhaps they are just laughing because they are nervous. However, I don't think that enough people take "fainting" seriously enough. Karyn

Thanks for the kind words about not being a failure. It does sadden me because this area is just another thing that I cannot do properly physically. I have accepted it mostly though. It does help to know that we are not alone with a symptom. I did try testosterone cream years ago and it makes me really irritable. It felt like PMS. I forgot to mention that suppression of my menses also contributes to low sex drive. I used to feel significant increased drive just before my menses. The suppression of my menses has really helped the worsening of my POTS around the menses though. It is a trade off. I rather be able to stand up than have sex drive anyday! Karyn

Florinef caused a daily headache for me. Midodrine is a godsend for me even though my migraines are more frequent. I could not work if it was not for midodrine. When my scalp starts tingling I know the midodrine dose is kicking in. I scratch my scalp due to midodrine causing itching. I tell my coworkers that I do NOT have lice!! Hah hah. Cheryl I hate the midodrine 10mg tablets but two of the 5mg tablets are so much easier to swallow. The orange 5mg tablets are easier to swallow than the white ones. There are different generic manufactorers. They are all so chaulky though which makes swallowing them without liquid a gag feast! I sometimes am somewhere without a drink but cannot be even a little late for my pills. I wish they had a longer half life. I feel them wearing off between doses even though I take 5mg two tablets four times a day. Karyn

If you have POTS your sympathetic nervous system is in overdrive. This the part of the nervous system that makes adrenaline. Adrenaline makes us feel jived up. It is responsible for the "fight or flight" reaction. You either fight the opponent or run away in the cave man days. It makes me feel like I have just plummeted down a roller coaster. It can make us feel anxious too. Beta blockers can help the fast heart rate and calm us too. A beta blocker along with lots of other meds have helped me. Some people need to take anxiety medications too like a serotonin reuptake inhibitor (prozac lexapro effexor etc.) or even benzodiazepines like xanax (like valium). Finding the right medication for each person is one of the keys to treatment. It can take awhile to find the right medication. THere are some simple things that help too. This site has information about things that help and things that hurt. Karyn

Jennifer I must thank you for bringing up this subject. I had wanted to talk about this subject for a long while with you all but was just too shy to bring it up. Morgan and Sophia it makes me feel like less of a failure to hear that others have the same problem with orgasms. Thanks for sharing. I gave up on them several years ago. My husband and I have been married for 15 years and he used to have the goal of trying to help me to that point. It has only happened twice. It just distressed me when I knew it was highly unlikely to happen. I assured him that it was not his fault...that there was something wrong physically with me. I assured him that it still feels very good even without the O and that took the pressure off him. He does not even ask anymore if I achieved the you know what. I am lucky that he does not have a strong sex drive. Interestingly the information that I have read about the autonomic nervous system and sex just mention mens sexual problems. THey don't mention women but it makes sense that our function would be messed up too. I have a history of bilateral hip fractures too so who knows what that might contribute to the problem. During that accident I also ripped some of my external genitalia. It did heal well though. That happened at 18 years of age which was way before I started relations so I have nothing pre-accident with which to compare. Sophia you mentioned viagra. I did ask my GYN about that and he did not think it would be safe for me given the POTS. Karyn (My daugher's name starts with Eli)

I was given a trial of norpace years ago, and it did not help me at all. I think a cardiologist would be much more likely to prescribe it than a neurologist. Karyn

My jaw just dropped open. I can move my fingers together to mimic a snake's slithering movements. I show other people to get laughs, but they can never do it. I wonder if I have something that I never suspected. It is amazing that we don't realize that some tiny things can be abnormal. As a young adult I used to think that everyone must get dizzy if they stood too long. I thought it was normal when my symptoms were soooo much milder. Karyn

Yes, I never could wake up well... even as a child before the POTS demon. I am so NOT a morning person. Now, I am always dragging in the mornings. I cannot remember the year that I last felt not tired in the morning. If I don't take melatonin at bedtime, I have started to wake up after each dream. That's what it seems like anyway. Karyn

I am embarrassed to talk about this issue but you are the only people I could possibly discuss it with besides my husband. I used to have a better sex drive than my husband. I think the fatigue AND the beta blocker have robbed my drive. My husband has rarely ever initiated, and he is tired from his chronic illness too (diabetes). So, there have never been arguments on this topic, thank god. We have not had relations in I don't know how long. I cannot even remember! I think it might have been summer or fall. Also, now I have pain with relations, and my GYN is trying to help with that. It is getting worse though. The most embarassing thing is that I don't have orgasms. I mention this because I have a huge question. I hope this is not taboo for this site. Do you think this is a POTS related problem? Even before the POTS became disabling I had this problem. I think I had tiny, tiny symptoms of POTS long before I was ever slammed to the ground by the illness though. K.

Has anyone tried botox in the armpits for excessive sweating? The prescription antiperspirant is not working well enough. I am ruining my shirts. Karyn

Corey, Yes, you are correct that some medical illnesses are much easier to treat than others. I don't agree that some of the "local yokels" have little interest in treating or diagnosing POTS simply because of money issues. If you detect disinterest, I think it is because POTS is so poorly understood and in some cases difficult to treat. It is very frustrating and demoralizing when a physician who really cares can't help a patient. I can tell you that I know a physician who allows significantly more time for patient visits because that physician wants to make sure that her patients get the time that is needed. This is not to her benefit. She could make more money seeing more patients in shorter amounts of time. She also spends a great deal of time and energy as a neurologist trying to find the cause for an atypical constellation of symptoms. I KNOW that I am NOT the only person who practices like this. Not everyone in this world is driven by money. I don't bother to check my own orthostatics because I know by my symptoms when I am in trouble. I don't need to see the numbers to know. Perhaps some of your doctors rely on your symptoms in the same manner? Karyn

This would be a good poll topic. How many of us have been discriminated against in our workplace due to POTS? I was. I was forced to leave even though I had finally agreed to perform all my pre POTS functions. They just did not want a sick person around. I was so upset....an understatement. I NOW have a job where they treat me like a valued human being despite my limitations. They value me for what I CAN do!!!!!! I would love to shove that Marshall article in their face. I did not sue my previous employer because it would have taken too much of a toll on my health. Someday they may have an limiting illness and perhaps regret how they treated me. What goes around comes around. Sorry to sound bitter, but I am in a "mood" with the holiday demands. As someone else said in another post, letting things wash over you without too much upsetment is the best for my health too. Karyn