Eli6596

Sorry that I am going on and on, but these posts really hit home. Becca, your point is really good, and I just read it after I posted my post. Yes, when someone is ill, they immediately think how it will impact THEM. Lots of older people have illness, and you are in a unique position to be able to help them even though you are young. I am 42 too, so you ARE young They will know that you understand if you say, "It is hard when your body does not do what your mind wants it to do" When I share with my patients that I have a chronic cardiac illness, it brings me closer to my patients. They really like that I KNOW what they go through. I understand how overdoing it makes you pay the price. I understand how employers can discriminate against you. I understand how it feels to take handfulls of pills for breakfast. It has brought me closer to my patients and made me a much better neurologist than I would have EVER been without this illness. Good things CAN come out of hardship. I fully understand this. I have not just read it in a book somewhere. You can use your illness to be a better pastor than some young wipper snapper without any problem at all who cannot REALLY, truely understand. Sorry to go on and on. My husband and kids are visiting the in-laws, so I finally had time to post instead of just reading the posts. Karyn

I am so sorry that you are being tested like this. It is a burden that none of us deserves. People can be so two faced. They pray to God and want to follow what God teaches, but do not apply it in real life. As a physician I was most callously treated by my fellow physician colleagues who whould roll their eyes when I would lie down between seeing patients. One of my colleagues wanted to give me orders in relationship to my healthcare even though he was NOT my doctor. I see similar behavior in the person who took your pulse. After being disabled with POTS for 6 years. I have learned that some people will NEVER listen to reason. THose people could talk one on one to your doctor and still have cold doubting hearts. It sounds like some people in your congregation are not rational. I think it is a waste of energy to focus on those people. Forgive them for they know not what they do. I was never an overly religious person but I have grown closer to religion due to my illness. I have prayed to God to please help me forgive those people who have persecuted me. In those moments of prayer, I find peace. I pray for God to help THEM even though anger has overwhelmed me. I would tell those people that you forgive them and pray for them. I would set boundaries. It is an arrogant violation for someone to take your pulse and judge you ignorantly. I have noticed that people doubt me less when I keep my explanations of my illness simple and confident. I don't beg them to understand. I just say that I have a cardiac illness so that I can pass out if I stand up too long. I also say that the disease causes extreme fatigue. I cannot do everything that I want physically. You are in a unique position to help them be better people, closer to God. I like the idea of you spreading enlightment through your sermons which can help you AND the section of ignorants in your congregation. I confess that I have not studied the bible but there must be something in there about worshipping God but not really following his preachings outside the doors of the church building. How about "Judge not lest you be judged" There must be a gold mine of lines in the bible that could teach these people to be more tolerant! I would also keep positive and focus on the wonderful people who do support you. God knows that you are ill. Your doctors know that you are ill. God knows how hard it is to stand during a sermon and would understand if you sat on a stool to preach. I sit down in mass instead of standing every few minutes with the congregation. I used to worry about the looks that I would get. My husband then told me that GOD knows why I sit in mass, and that the opinion of the others should not matter to me. Karyn

Hi from Illinois.

Hi Congratulations on your new baby girl. Children are such a gift. My daughter had GERD too, so I remember those huge spit ups. Feedings took twice as long because she used to spit up half of what she drank. I had to give up on breastfeeding after a few weeks because I was always nursing which was making my POTS so much worse. My baby girl is now eleven years old! She outgrew the GERD and had no long term consequences. My second child had no GERD and was a great eater. He was sooo much easier to feed. He is now 5 years old and will be 6 years this month. It is really true when they say that they grow up fast. I am starting to forget some details of when they were very young. My son is now the chatter box and my daughter is more reflective. I hope you are able to ease back into work. That was such a stressful time for me. Be patient with yourself. Karyn

Oh yes, I have bad problems with smells triggering my migraines too. I smell the disinfectant in the store before buying it. If it smells like lemon or orange, a more natural smell, I have a better chance of tolerating it. I would suggest trying a mask which might help to block out odors at work. However, I find it difficult to breath and hot while wearing a mask. I use Oust which removes odor from the air, but I don't know how practical that would be with those odors at work all day long. Migraine brains are thought to be more hyperexcitable, meaning we are more sensitive to the environment. It is not uncommon to have smells as triggers for migraines. Perfumes and scented lotions are the killers for me. To get more understanding and cooperation, I tell people that I am allergic to perfume. People don't seem to care about causing someone to have a migraine, but everyone is much more attentive about allergies. Karyn

Flop, thanks for the info. I have found this site to be incredibly helpful, both as a fellow POTS patient and physician. I try to come here primarily as a patient, and not as a doctor since I too need support and comraderie due to this illness. It is nice not to feel so alone with so many wierd symptoms that are sometimes not in textbooks. I do get tempted to make comments from the physician side of me from time to time. Doctorguest, I sent you a personal message. I mention this here because I don't know if it reached you. This is the first time I have tried this computer feature. I had difficulty even figuring out how to check my inbox, and found very old unchecked messages. Karyn

I just received this same exact comment yesterday. I think that a lot of people feel uncomfortable when we are talking about hardship. They are struggling in their minds for the correct thing to say. They want to say something to make us feel better. I don't think that they realize that someone would NOT want to be told that they look good. This is especially true in a society that is so focused on appearances. Most people who have made this comment to me really have meant no harm. I try very hard to pick and chose what I will be upset about because any negative emotion makes me feel really sick from the POTS. The luxury of my anger is simply not worth the wasted energy especially when I realize that the person did not say it maliciously but rather out of lack of insight. I would cut the researcher some slack. I bet he was just excited and amazed. He is just trying to make sense of you in his mind. I remember there was a poll about POTS and looking young. Most of us do look young. That would be interesting research especially since most people would kill to look young for their age. However, I rather look my age and NOT have POTS, of course! I have complimented people on their pretty, souped up walker before. So far, it has been taken as a compliment. It is just nice to see a walker that looks techinically advanced so that it could help the person better. Some people also individualize their walkers with handmade items. Karyn P.S. Doctorguest, are you a physician?

Hi I suspected that I was not alone with this symptom. I have had it for at least 5 years now, and it is stable. Dizzygirl, it does occur when I am feeling badly with my other POTS symptoms like dizziness and fatigue. The pounding does not really bother me except for the worry that it could be from something other than POTS. I don't know why we have it. I have done extensive testing in any patient that complains of this same symptom, and have never found anything....so far. None of those patients had POTS. I suppose I should get some testing done. None of my doctors have thought to suggest testing. Pat, does your sister have POTS too? Thanks for everyone's imput. Karyn

Hi Does anyone else hear their heartbeat pounding in one ear when they are having a bad day with POTS? It seemas to happen more when midodrine is wearing off between my 4 doses a day. When I had to go off all my meds for a tilt table test at Mayo, I could feel and hear my heartbeat throughout my entire body. I know that sounds wierd. I have been taught that this is pulsatile tinnitus, and that tests are indicated to rule out a vascular abnormality in the head and neck. I just hate to spend thousands of dollars if this is a common problem among us POTS people. I mentioned it to Dr. Low years ago and he really did not say anything. Karyn

Hi I take melatonin 3mg 1/2 tablet every bedtime. It works for me without side effects. I have hyperadrenergic POTS. I spoke with a sleep specialist last year, and he told me that melatonin is safe. He recommends a dose of 1 to 8mg at bedtime. Doctors often recommend off label indications and dosages of medications. If you want clarification of the dose that was recommended, just call your doctor's office and ask. Karyn

If you do decide to share your medical information, I would minimize it by keeping the explanation very simple like saying that you get dizzy if you stand up too long. I would emphasize that it is not a degenerative disease (does not get worse with time), and that it is not anything life threatening. The biggest thing is to show that the illness does not stop you from doing your job. That is really the only thing that most bosses care about. If you do complain too much, and give your health as a reason for not being able to complete tasks, be aware that a lot of bosses will just want to get rid of us. I speak from learning the hard way. Karyn

As someone else said, we all can really relate to each other. I remember dark days too, and it saddened me that you were so sick even though I have never seen you. I think it makes us appreciate everyday things after such a horrible sickness. It sounds like you were sent an angel in that nurse. I was in the hospital for 3 months when I broke my pelvis in two places as an 18year old. I felt like I had been released from prison after I left the hospital. I remembered thinking that the air smelled so sweet. I wanted to kiss the grass! Probably no else besides us would understand that the physical and emotional difficulties from POTS are soooooo much harder to deal with than two broken bones! I bet you know what I mean. I hope you can be patient with your body. That is always the hardest thing for me. Welcome HOME, Karyn

I have a light box at work and at home, the latter to use on weekends. I know that it definitely helps with my depression which worsens in the winter. Before I got a light box at home, my depression would worsen over the weekends. It is expensive but so worth it. I recommend Northern Lights. They have nice customer service and their lights work. Karyn

I don't think anyone mentioned oatmeal baths. This helps my children when they get rashes. In case you don't already know about it, they sell it in packages of powdered oatmeal. I find it harder to deal with itching than pain... except migraine pain. Karyn

Hi I just want to put a good word in for antidepressants. I struggle with depression especially during the dark winters and when the POTS flairs up. No amount of family support or talking could have saved me from depression. I just need medication. I have side effects from any prescription antidepressant I have tried. Thank goodness, my mood can be controlled with just St. John's wort I would encourage your mom to seek medical attention if not already done. So many depressed patients suffer in silence without talking with their doctor, especially older patients. Sorry if you already mentioned that she is getting meds. My attention is impaired due to the pOTS tonight. If she is taking meds, and they are not working, there are so many choices nowadays that her doctor might try another. As everyone else advised, don't let yourself get sucked into the vortex. I guess that is a bit graphic but depression is awful and can consume everything around it. Karyn

ONe of my patients' cat died due to the tainted catfood. She was nearly in tears talking about it. She was on the local news and has joined a lawsuit. She says that the wheat gluten was tainted with arsenic. The wheat came from China and over there they used rodentacides. Sad, very sad. She fed her cat Iams brand. My two cats are fine with Friskies dry food. Karyn

I work 9am to 5 or 6pm at a desk job primarily. Can you lie down during your lunch time. I find that lying down for 30 minutes during the day helps me. Also, I started using a motorized scooter during the day which helps to conserve my energy when I do have to go around the building. If I did not work, I would easily be on half the medicine that I am on now. Can you maximize your doses of meds or add more meds? Salt tablets allow me to hold in more of the water that I drink without urinating it out all the time. Are you wearing compression stockings? I could not do what I do if my husband did not help me. He helps the kids with all of their homework. I don't do the laundry or clean the house. I was in a similar situation as you 4 years ago. My job was too much for me. I would come home and just stay in bed all night until the next day of work. I felt like I was not there for my husband or children. I felt like I was drowning physically. I was able to cut back on my hours at work dramatically and still be the only bread winner for the family. I had to switch to a different employer. I was lucky to have that opportunity but I still struggle with a lot of fatigue. I hope that you can find the right balance. Karyn

My 11 year daughter is in 5th grade and already learned to use powerpoint!! My 5 year old preschooler uses the computer with confidence. It amazes me. You go tea! Make yourself as invaluable as possible. You want to be as qualified/attractive as possible to overshadow the physical limitations. Some of our limitations don't matter with a desk job so I would not even mention to avoid clutter. For example, I would not even mention not being able to use stairs unless you think that you would be working in a building without an elevator. I will never forget one of the places that offered me a job. They said, "We do not feel that we are "settling". This statement was made despite my limitations, and made me feel so valued. I would have taken that job but the location was too far away from family. There ARE great employers out there but we just have to hunt aggressively for them. Good luck, Karyn

I heard that sea salt has less sodium in it. Does it work as well as regular table salt for POTS? Karyn

He looks like my cat! What a cutie pie. I just love cats. I think I have always had a cat since I was a baby. My cat likes to pur, lick my skin and then give a playful nip. He will lie on my chest like a dog. We don't have dogs because we are too tired to take care of anyone else after two cats and two small children. My 11 year old daughter is eaves dropping and says " I am NOT a small child!" My husband and I call our cats our fur babies. Karyn

Don't give up. You should be able to find a part time desk job that appreciates your smarts. I had 3 "head-hunters" looking for a job for me 4 years ago. I was also looking myself. I am the one who found my job even though those head hunters were professionals. I had lots of people who were not interested at all after a few minutes of hearing my limitations. I found another job as a physician even though the medical community in general can be very harsh and demanding of its workers. We are expected to show up for work unless we are half dead ourselves. There has to be some-one out there who sees your talents as outweighing any limitations. I have a very good friend whose husband is in a wheelchair after spinal cord injury. He does research on spinal cord injury. I think that would be so neat to be employed in a job that could help others with disabilities. I guess I do that too in a different way. You might have an opportunity to do the same for this company that is supposed to be helping disabled people. Karyn

Tanzanite, I am sure that your doctors are not giving you estrogen because they don't want to kill you...literally. A blood clot in the leg can travel to the lung and you die. I do have an idea that you could ask your doctors about. Depoprovera shots can lead to cessation of periods in some women and they only contain progesterone. That would get around the risk of estrogen in BCPs. Hope this helps Karyn

Sorry it took me so long to answer. Gynecology is not my area of expertise but I do know that BCPs carry an increased risk of stroke. Getting older is also a risk factor for stroke. I have never heard that continuous BCP have any additional risk of stroke. I was told by my pharmacy that the brand name alesse is not being made anymore. I also take aviane and had more cramping when I switched to generic. I don't have spotting. I count my blessings. Different gynecologists have told me that I don't need periods and others say I should have one periodically. My current GYN says I don't need to have a menses, so I have followed his advice. I think the GYNs more widely recommend a period for patients with breakthrough bleeding. Having a period periodically is supposed to help that problem. I completely relate to not wanting to have a period though. My POTS goes to pot before and during a period. Karyn

If no-one else mentioned it, a cooling vest might be nice if you are going to be outside in the heat. Let us know how it goes for you. I want to go there with my husband, and two children one day. I am afraid of not being able to handle it and spoiling it for everyone. Karyn

I have been flying for years with POTS. I find it critical to elevate my legs during flights. After I sit down I look around to see if there are any extra seats. If there is an extra seat, I explain that I get very dizzy if I cannot elevate my legs. I ask very politely if I could move so that I am next to an empty seat. That is the ideal setup. If you are sitting next to someone you know, you could just rest your feet on their lap. I am very short so this works well. I flew last month and discovered a new trick for a flight with all seats filled. If you can reserve a seat, reserve a "bulkhead" seat which has no seating in front of it. There is just a wall. Then during the flight I elevate my legs on my seat cane which I position against the wall in front of me. During take off and landing the flight attendant will stow the cane overhead but they can give it to you to use during the flight. You cannot take bottled water through security BUT you can buy all the bottled water that you want past the security gate and then bring it onto the plane. You can take water through security IF you have a note from your doctor. Like everyone else, I wear my compression stockings and request a wheelchair with assistance. A lot of the wheelchair pushers will expect a tip. (FYI) I make sure I arrange the flight times so that I don't miss sleep due to too early or late of a flight. I make sure that the layover is at least 40 minutes so I don't miss my connecting flight Hope this helps. Good luck. Karyn