Eli6596

Hi I answered a similar topic in this forum just a few minutes ago. I thought of a few other things after reading these messages. I have a recliner in my office. When I have a bad day, I can lie down for 10 minutes for a mini-boost. Also, they adjust the thermostat for me or get me a fan. I have two children, ages 5 and 10 years. My husband stays at home which takes some stress off me. Sometimes after work I have to stay in bed most of the rest of the day to recover for the next day. I have no social life. I cannot do as many things with my family as I would like. In summary, I do sacrifice activites outside of work to have energy to work. Karyn

Hi Without medication I would pass out in less then a minute everytime I stood up. I am now on big doses of midodrine, a beta blocker, mestinon, salt tablets and suppression of menses. With these measures I just feel dizzy frequently everyday but never pass out. I always feel tired. I left a job as a physician because I could no longer take call (stay up all night) or do hospital work (walk around a lot). I changed to a different job in my profession in a different state 3 years ago. I was very upfront with them about my illness, and limitations. They hired me for what I can do, and I am able to do this job. I use a motorized scooter in the building, and limit my hours. The bad thing about working with the public is that I get exposed to lots of germs. I have not written in a while because I was down and out with the stomach flu/dehydration, and then flairing of my POTS and migaines thereafter. It took me a month to recover. I missed more than a week of work. I wash my hands after each patient now like I should have done anyway!!! I hate being limited by POTS, but I am so lucky that I have been able to work still. I could not do it without the correct medications, an understanding employer, and cutting out things that I cannot do. Hope this helps, Karyn

I feel for you. I feel the wetness myself. I don't have the sweats as bad as you, but I have ruined clothes due to sweaty armpit white rings. Mine gets worse wtih startle or stress too. I use drysol prescription antiperspirant, but I still have wet patches which people stare at. I feel like a pig at times. Drugs with anticholinergic properties are supposed to dry us up. I see that you take nortryptiline which has mild anticholinergic properties. Amitryptiline or artane have more anticholinergic properties. I even sweat when my hands and feet are ice cold, and even during the winter. Do you too? Does your sweating get worse when the POTS gets worse? If so, maybe better overall control of POTS might help the sweating. Karyn

Hi The normal ferritin level will vary from lab to lab. You need to ask your lab about their normal range. This can be the case with other lab values too. It can depend on the equipment. What is normal for a RESTLESS LEGS patient is different from a patient without restless legs. Restless legs patients should have a ferritin greater than 45. Karyn

Lisa, It was so interesting to hear what Dr. Grubb said about exercise. I am guilty of either overdoing it when I try to exercise or do no exercise at all. I have noticed swimming to be the most satisfying. I have always loved to swim. Since suffering from POTS, swimming has been the only time that I feel close to normal besides lying in bed on a good day. I say "close to normal" because I really have a hard time remembering what normal feels like! I hope your exercise will be successful. I want to try exercising again after reading your message! Dr. Low at Mayo recommends lifting weights to build up the muscles in the lower extremities. Did Dr. Grubb mention anything about weight lifting? He really sounds wonderful. Karyn

It just amazes me that so many of us have sleep problems. It is particularly bothersome since we already have so much fatigue. Thanks again for everyone's input Michigan Jan, jerks of the limbs while falling asleep is not uncommon. It used to be called myoclonus but the terminology has changed to "periodic limb movements of sleep" (PLMS). I have never had anyone describe yelling out during the jerks but perhaps it is just a nonspecific startle reaction in response to the surprise of the jerk. PLMS can be associated with restless legs syndrome or sleep apnea, but sometimes they occur in "normal" patients too. PLMS only need to be treated if they interfere with sleep. A neurologist or even family doctor may offer medication. Karyn

Hi I can really relate to your question. My biggest problem is overdoing it. I know very well how to pace myself mentally but I too am a type "AA" personality! I look at my activities as units. Anything besides lying in bed uses up my energy stores. I have had to learn from trial and error which things sap my energy. It is like being on a diet. There are low level drains and high levels drains. For example running an errand is a high level drain but cooking a simple dinner while standing might be a medium level drain. If I want to go to the grocery on sunday, I subtract out other activities like cooking dinner, washing dishes. When I run an errand I use the motorized scooter in the store to conserve my energy battery for OTHER things later in the day. If I have the inlaws over for a holiday, I know that I need to schedule time off work to recooperate. I never clean the house anymore because I have to subtract out too many other activities to avoid a crash. It is like being on a diet. If I have that big piece of chocolate cake (going to the grocery store) then I need to skip the soda or eat light the rest of the day (not clean the house, etc.). To keep myself in check, I just think about how I don't want to be fat or don't want to be lying in bed all day. Dr. Low has recommended strength training for me before tackling aerobic exercise. He recommends lifting weights on weight machines for my legs and abdomen but avoiding the arms. If I ever stick to it, I'll let you know how it goes. Karyn

Hi everyone, Thanks for all of your stories. I am thinking about asking my primary care physician to order a sleep study for me, and your answers have helped me to think that it might show something. I know that sleep disorders are seen in POTS but I don't know anything more than that. I don't think that there has been research into it. I attended the American Academy of Neurology conference in 2005 and asked the panel of autonomic nervous system speakers about sleep disorders in POTS. THe only response was that "yes, they occur and often it is sleep apnea" To me it makes sense that we would have sleep problems because of sympathetic nervous system overdrive, too much adrenaline. The sympathetic nervous system is responsible for "fight or flight" when we are in danger. The last thing your sympathetic nervous system would allow in a dangerous situation would be sleep. I wish I had the energy to do research on POTS. Karyn

Hi I sometimes have difficulty falling asleep and awaken more than once during the night, often after a dream. I know that sleep disorders occur in POTS. Dr. Low says that there is not a specific sleep disorder associated with POTS. If you have had a sleep study, what was your sleep disorder diagnosis? For example, sleep apnea or anyone with REM sleep disorder? Does anyone with POTS have sleep apnea WITHOUT being overweight? Thanks, Karyn

What a terrible experience. It could have happened to any one of us. Since I started using my seat cane, I don't get those nasty glares and rude comments anymore. Gracie, I laughed hysterically when I read your idea about syphilis or brain tumor. Wow, I am tempted to use that one. However, when people ask me what "happened to you?", I look at it as an opportunity to spread knowledge/understanding about our illness. Most times I just simply say that I pass out when I stand up too long or walk too far. I rather people ask than stare at me. I would definitely complain to the store manager about the incident. People listen better if they think they might lose money. When I am unhappy about a store, I usually say "I really like your store except for such and such. I really don't want to go to your competitor but .... " Also, as Gracie suggests, faulty equipment could result in injury. Even if you would not sue them, another customer might. If you don't want a potentially upsetting conversation you could always write a letter. If you get no response, then I would send the letter to the top dog of the whole company. They should give you a gift certificate for your trouble... and some respect. Try not to take their ignorance personally. What goes around comes around. One day they might be in the same position for a different reason. Karyn

They come in different compression "strengths". I find that the 20 to 30mmHg work nearly as well as the 30 to 40mmHg for me and are much more comfortable. The brand of Jobst is more comfortable than another brand that I had in the past. Jobst made the fabric more comfortable in recent years. I wear them when I am having a bad day and take them off at night. Don't wash them in Woolite because it can breakdown the elastic. I did not learn that until years after I had been using Woolite! Karyn

Because of your courage to fight injustice, you have made it easier for the next person who needs something from them due to disability. Unfortunately some uncaring people will only do the right thing when forced or threatened by loss of money. I can't stand the heat either due to POTS. Thank you and congratulations! Karyn

Instead of asking the pharmacist, I would recommend calling your neurologist's office even before your next visit. You can talk to the nurse who can get an answer for you. I am on mestinon 160mg timespan every morning and noticed no difference in my HR. It does help me mildly, but enough to continue it. My nausea resolved on the timespan (slow release), compared to the immediate release 60mg tabs. Karyn

This is really a difficult issue. Like others have said, there are sooooo many different levels of POTS symptoms, and so many individual reactions of the POTS to pregnancy. I did not have any disabling symptoms until my first pregnancy. I was on bedrest for 2 months with the first pregnancy and got by without drugs. After delivery I could not have taken care of my daughter or MYSELF without my husband for the first 2 months. I cried with exhaustion. I recovered to my prepregnancy self about 2 months postpartum except for mild dizziness with sleep deprivation or colds. My husband and I took 5 years to finally work up the courage to have another child. My health went down the toilet and never recovered after the second pregnancy. I needed a beta blocker at huge doses just to get to the bathroom during the second pregancy. I was in a wheelchair outside the house during pregnancy. Now, tons of medicine do prop me up so I can go to work, cook dinner most nights and put the kids to bed. I am always tired. I would never have another child for many reasons. First of all, I could not go off my medicines without being confined completely to bed. I could not safely conceive a child on these meds without having a three eyed cyclops. Even if I and the baby lived throught the pregnancy, it would be totally unfair to my other 2 children. I can bearly keep up with two. My children are the greatest gifts from God. They are the joy of my life. They are a blessing. Sorry about rambling. Sometimes it is therapeutic to vent. I do have a few pieces of uplifing thoughts. First of all, my friend who has juvenile arthritis and whose husband is paraplegic are now adopting a baby. A birth mother chose them because she knew that they had been through a lot and must have developed wisdom from hardships. It was viewed as a plus to some. Of course, her doctors had to write a letter stating that she could care for a child. Second piece of positive thought is coming. My daughter has whined at times because of me not taking her somewhere when I don't feel well. But she is much more wise than most kids about illness, I think. I very, very rarely go to the mall. I went recently and used a motorized scooter. Teenagers were laughing at me in the store when I had trouble navigating past the narrow aisles. I told my daughter, and she said that she knows that if someone is in a wheelchair, etc., you should not treat them any different. We went to see a movie together. I had to get up after 45 minutes to do repetitive squats to avoid syncope after sitting too long even with my legs propped up. Teenagers in front of me said " Ohhhh, I did not know the circus was in town!!! Ha ha" I did not hear them. My daughter (9 years old) bravely said to them, "Stop it. She has a really good reason for doing that" I was so proud of her. My daughter did not even tell me until after the movie because she did not want it to ruin the movie for me! Also consider that the personality of the child makes a big difference. My daughter was easy. My 4 year old son is running circles around me. My husband and I jokingly say that if he had been born first, he would have been an only child. I hope your health gets better with different or more medication so that you can at least adopt if appropriate. Karyn

Yes, I know what you mean. Everytime I get even a little cold, it drags on for weeks. I often start feeling worsening of the POTS BEFORE the cold symptoms even hit me! Anyone else notice this? The cold symptoms like congestion, sneezing, coughing etc. are nothing compared to the misery of the worsening of the POTS symptoms. People without POTS or some other chronic illness don't know how lucky they are JUST to have the cold symptoms themselves. I started avoiding shaking hands in mass every sunday, and I avoided a cold this christmas season (knock on wood!). Hope all of you get over your colds/flu quickly. I feel for you. Karyn

Hi Kim, I am so sorry to hear that you were treated like that. Being a doctor does not automatically mean that you are compassionate. Doctors are people first. Any person can be a jerk, or act like a jerk on at least one occasion. Some doctors never learned compassion, and some had it but lose it due to burnout. I believe that it is essential to find a doctor that not only has compassion, but with whose personality/style you "click". We all deserve that. Please don't get bitter about doctors. There are a lot of good ones out there. Karyn

Hi Mestinon helps me a little. It feels like I have less downs before my midodrine doses because of mestinon. Sunfish's input on mestinon and GI isssues is interesting. Sunfish, what were your symptoms during the mestinon overdose? I am curious if they were similar to a myasthenia gravis patient's symptoms when overdosed with mestinon. (You know that mestinon is really just approved for these patients.) I found that my heartburn/ reflux definitely worsened on mestinon. In myasthenis gravis patients, GI side effects are the most common. I have less GI side effects (stomach pain, nausea) on mestinon timespan (the long acting form) compared to the immediate release. I MIGHT have gotton more wonderful peaks on mestinon immediate release, but I could feel it wearing off between dosages. The timespan is smoother for me. I can see why timespan might be a problem with GI issues because of absorption issues though. Karyn

Hi Gracie, Oh boy, I sure can relate to this topic. I can tell you what works for me. 1)If I am having a "bad day" with POTS even before any social gathering, I just don't go. That has happened a lot. My proamatine wears off way before bedtime. 2)The biggest thing that helps me is to leave EARLY no matter if I am feeling fine at the time or not. Sometimes in social gatherings I don't pay enough attention to my body signals, and then crash later. I decide ahead of time with my husband the absolute latest that we will stay. We never stay longer than a total of 2 hours. We just went to the office christmas party this month, and left after an hour. If you don't feel comfortable sharing about your illness, think of another reason ahead of time. You can even say that you won't be able to stay long when you first arrive. 3) I love Carmen's idea. I have used it myself. I have migraines, so if I do not eat my dinner early I will suffer big time. Most social gathering are way too late for me to wait for dinner. I sometimes will eat my dinner at home, and a small amount at the social function. I bet a salad would not mess you up, and eating a salad for a meal seems very acceptable these days. Hope this helps, Karyn

Hi Belinda, I was having a lot of problems with my food feeling as if it was getting stuck. It felt like a spasm. The pain was excrutiating. Sometimes the problem would occur just with swallowing saliva. I used to awaken in my sleep gagging. I finally tried prilosec OTC and the feeling of spasms have stopped. I initially had diarrhea, but now have no side effects from the prilosec. It is one of the few medicines I take that does NOT give me side effects! I hope you can find a pill that will work for you so well. Sorry if you already answered this, but have you ever tried any of the anti-acid medications. Karyn P.S. I had a POTS moment. I just noticed protonix in your list of meds. It sounds like your doctor is not ignoring you because he or she is offering you medication ideas. My advice would be to just try everything the doctors offer, and call if the meds don't work. I bet your doctor has plan b, and plan c, etc. Unfortunately, as you know what works for one person may be a total flop for another. I hope you find the right solution as quickly as possible.

Persephone, Wow, Medieval English would be so fascinating to study. My dad is 70 years old and still publishing his peoms and teaching English at the University of Mississippi. He WAS teaching English before the hurricane wiped out most of the Gulf Coast in southern U.S.! I love the liberal arts, but I have neglected that area to pursue medicine. When my children get older, I hope to find more time to broaden my mind again. I cannot imagine being in school with POTS symptoms. I was soooo lucky that I finished school, and then residency before POTS hit me. I admire you and the others here for plodding through school despite the POTS. I find it difficult to concentrate to study. I can still learn new information, but it requires more effort. My 4 year old son likes to jump on my back, or pull the book away from me when I read too long too! I too find it hard to have a social life on top of study (work in my case), plus have POTS. My only friends are those that I made before POTS hit me 4 years ago. They live out of my state, so thank goodness for email, and unlimited weekend cell phone minutes! However, I even get tired talking too long on the phone. Karyn

Hi Has anyone here ever gotton benefit from norpace? It did nothing for me. Karyn

Hi Persephone, It is nice to know your name. I loved reading about your joy with the books. I feel the same way about libraries and books. When my son was 3 years old last year, he went through a phase when he was tearing the pages out of books. I almost died. It felt sacriligious (sp?). I love looking at old medical books. It makes me feel connected to my ancestors who had so much less with which to work. I admire the photos of the female physicians from the 1800's who must have had to go through so much crap to do their job because of sexism. It makes me remember that we are just specks in a huge human race tied together by centuries. I mean that in a good way if you know what I mean. Are you working on a Phd, and in what field? Karyn

Persephone, I know what you mean about libraries. I LOVE the ambiance of libraries, but hated to be confined to a desk/chair setup. I used to go to the local law library just so I could study on one of their couches. I also would nap too! They never harrassed me, thank goodness. I hope maybe you could discover a library with a couch? Karyn

Belinda, I want to say something to make you feel better. I can feel your anguish from your posts. I think it is so hard not having a diagnosis yet. I know how hard it is to be patient with testing and arriving at the diagnosis. Try to take one day at a time. Letting others get you upset will just worsen your health. Persephone, I smiled in recognition when you wrote about the "stress" explanation. Even though I am a physician myself, I got the "It is just stress speech" too! Urghhhhhhh. In the mid 1990's, few people, including myself had even heard of POTS. Finally, I saw a cardiologist who knew what was wrong with me. It was SUCH a relief to have a diagnosis, because then I felt power to do something about it. I pray that you are so empowered. When a physician does not know the cause for ailments that are sometimes linked to stresss, he or she finds it easier to just blame those ailments on stress, anxiety, depression, etc, rather than say "I do not know". The dangerous situation occurs when a physician assumes that a psychiatrically ill patient cannot have concurrent REAL physical illness too. In fact, as we all know, physical illness makes us feel crappy emotionally. When we feel weak emotionally, this then can worsen the underlying physical illness. It is a vicious cycle. Just FYI: when a patient makes a comment about hurting themselves (jumping off a bridge), the physician is bound by LAW to refer the patient immediately to a pyschiatrist. The requirement for involuntary committment is that the patient poses a risk to herself/himself or others. Making it clear that you would not REALLY hurt yourself (I am assuming that you would not), will avoid such a bad situation. Cymbalta is a new antidepressant, similar to effexor. Effexor has been reported as helpful for some POTS patients, although not me. I wish you all the best. I hope that your tests and the right doctor lead you to the correct diagnosis soon. Karyn

Wow, Thanks for the article biarrose. I had no idea. I take melatonin on an as needed basis. I feel sluggish in the morning but not if I take a very small dose. I wonder what dose they used in the study. Also, if they used healthy volunteers and they had abnormalities, I can only imagine what it might do to us. There is a melatonin agonist that will be released soon, I hear. It will be by prescription. I bet it might cause the same effect. I don't like sleeping pills or benadryl. Benadryl really does make my POTS worse by the way. What do others think of valerian root or other natural remedies? I might have to resort to warm milk at bedtime. It works for my small children. Karyn