Lethargic Smiles

Insomnia is the worst. It's cruel to be fatigued all of the time and not be able to sleep. Natural Options I've Used I took Melatonin 3mg for awhile, but it can effect blood pressure and it was messing with my already low pressure. It was worth the try because it was natural.I continue to try and not look at any bright screens 2-3 hours before bedtime. It messes with the brains sleep-wake cycle.I avoid caffeine after noon.I take a warm bath before bed.Prescriptions I've Used For awhile, I needed Xanax to get to sleep because my insomnia was due to anxiety. Now my insomnia is, like yours, the result of medications (Adderall).Prior to Xanax, the doctor tried Klonopin. It didn't agree with me. I cried all of the time for the littlest things (like not being able to find my other shoe )Ativan seemed to energize me rather than sedate me.The winner: I take Ambien. I am prescribed 10mg, but usually just take 3mg-5mg. It doesn't knock me out, and doesn't always work, but if I am sleepy, it makes it easier to drift off and stay asleep.

Feeling like a burden is a difficult part of chronic illness. Sometimes the emotional parts are even more difficult than the physical. It took me at least a year from the point I became disabled to accept my family does not view me as a burden. To give you some reference, I am 24 years old and live with my fiance and parttime with my stepdaughter. Both of our families help quite a bit due to my illness. Is anything occuring or being said to make you feel as though you are a burden? If it is mostly you assuming your husband views you as a burden, tell him how you are feeling. You may be surprised by he views it. My fiance just wants me to feel the best I can. He doesn't care if our house is spotless or how elaborate our meals are. He cares if I can do stuff as a family and if I can go to our family functions. He wants me to ask him for help and not make myself sick doing too much. My family (parents and sister especially) want me to ask them to come over and help with laundry, mopping, or the kitchen. I'm still amazed by how much my family doesn't view me as a burden. Love is absolutely astounding. I have a blog and have written on relationships, children, and chronic illness. I'll include a few links rather than repeat my experiences with still being a good stepmommy and her understanding of my illness. It can be pretty difficult for them to understand someone can get sick and not get better and not die. The best explanation I have found is "I get tired too quickly so I need to rest more than you or Daddy." I do things such as bedtime because I can do that laying down and I treasure our girl talk we have while she drifts off. Here are some fairly POTS friendly activities to do with your child: https://lethargicsmiles.wordpress.com/2012/11/06/a-3-year-olds-understanding-of-chronic-illness/ The day POTS finally "clicked" for stepdaughter was amazing, it'll happen for you too: https://lethargicsmiles.wordpress.com/2013/05/05/ageless-understanding/ My top blood pressure number tends to be in the 90s and lower 100s. My resting pulse prior to a beta blocker was around 80 and would go up to 130 while doing things around the house. With Midodrine (raises blood pressure) and Propanolol (beta blocker) my resting, supine post is around 60. Sitting up its around 70-90 depending on if it is a good or bad day. Standing it still gets up to 110. It's kind of difficult in my experience balancing the beta blocker and Midodrine. You don't want the Midodrine to bring up your pulse too much, and you don't want the beta blocker to bring down your blood pressure too much. It really is a balancing act. Midodrine helped quite a bit with my lightheadedness.

Prior to my diagnosis, I had a basic psychiatric evaluation I used to take to every doctor appointment after 5 or so doctors told me I was depressed and/or anxious. When the doctor would come up empty handed and ask if I'd ever looked into depression, I'd tell them yes I have and point them toward the psychiatric evaluaution in my file. I'd ask if they had any other ideas. It was really nice because, not be rude, but it shut them up. It used to be I'd explain I wasn't depressed and the doctor would explain to me what depression is and explain denial is common. Grr.. Anyways, I can only imagine how much weight an in depth evaluation such as this would hold if my simple psych evaluation was enough for most doctors!

Mine reacts quite a bit to things too. Talking, being around noise, crossing my legs, etc... all can make my heart rate jump. Pretty much any movement I make, even if it is something that will eventually bring my heart rate down (propping up feet), causes my heart rate to jump about 10 beats. I wore mine in the bathtub the other day. As the water level increased, my heart rate increased more and more for a total of 20 beats. This may be way so many POTSies report not tolerating warm baths! I'll keep an eye on my heart rate monitor next time I'm drinking and report back. Did you notice if your heart rate changes when you just move your arm around like you do when drinking, or if it is stable until you actually swallow?

Thanks for your detailed answer! I have some specific things I want to be looked at (especially EDS) just so I can make sure my treatment approach makes sense. I'm going to start with a geneticist in Chicago (I live near) and go from there!

Liz, do you live outside of the states and that is how you get Ivabradine or do you use some other method? I've read about this particular drug and always been interested in it. Did he seem interested in looking for the root cause of your POTS? That's what I'm looking for right now. I don't want a doctor who will confirm I have POTS. I want a doctor who is interested in helping me figure out why.

This is wonderful! How was working with an attorney? Did you do that from the beginning or did you try going it alone at first?

Oh yes, avoiding alcohol is a must for me! I rarely indulge and almost always regret when I do.

I think most about what my food is made of and getting enough protein/carbs/fat to sustain myself. I go for whole foods (rather than food-like-products) and try and consume as few refined and processed foods as possible. My feelings are that my body is stressed out enough, so I don't want to be adding more stress by forcing it to clean toxins I am knowingly ingesting. I am working on eliminating chemicals in my life. I have succesfully done so with my food and I don't use any hygiene products with chemicals except deodorant. Our bodies are bombarded with toxins from the products we put on them (shampoos, lotions, soaps, perfumes, hair products), what we breathe in (pollution, candles, air fresheners, cleaning products) and what we consume. The body is amazing in that it does a pretty good job of detoxifying itself from all of this. Whatever it canot detoxify and eliminate through urine, the body tends to store until it is able to get rid of it. I try and help it out where I can. The antioxidants in fruits, vegetables, and whole grains help the body out with getting rid of these toxins. There is a documentary on Netflix called "Hungry for Change" that helped me truly understand why refined and proccessed foods are dangerous. I always knew they were bad, I just didn't completely understand the complete answer as to why. I do want to mention I have some food intolerances, but I don't know that they are related to POTS. I don't eat egg, dairy, soy, or gluten. Well before I came down with POTS symptoms, I would frequently look pregnant after eating. I have a picture of my stomach before and after eating some Chinese, and it's qutie amazing! I do feel better when I avoid these foods. However, who wouldn't feel better not being bloated, gassy, and backed up all of the time?

I know many POTSies who do not have hyperadrenergic POTS but are helped by using beta blockers to help control tachycardia. Using a beta blocker to help control the tachycardia POTS has blessed us with can help lessen or eliminate some symptoms. Here is my understanding... Beta blockers lower your heart rate whether you have excess norepinephrine active in your body or not. When the heart is tachycardic, it is pumping less efficiently and using up more oxygen and energy than it would be if it were pumping at a healthy rate. Since the heart is pumping inefficiently, blood flow around the body is less than optimal. The high oxygen/energy demand of the heart when we are tachycardic also contributes to some symptoms. (If you're interested, look into how your body uses ATP in energy production and how this process if slowed down by age and illness) I would think one of the symptoms it could help a little with is fatigue since the heart requires more energy when it is tachycardic. I know I'm less tired with a beta blocker, but I hear of people being experiencing drowsiness. Since the main symptom we all share is tachycardia, it makes sense taking a beta blocker helps so many. I am one of those helped by one (Propanolol), but if I were to take it without Midodrine, my blood pressure would be dangerously low. Although my resting/standing heart rates are lower with a beta blocker than without, there is still often a 25-50 beat discrepancy from going from laying to standing

I had a gastric emptying study done at Mayo. That particular day, of course my stomach was fine. Since I already was on Reglan, the doctors gave the typical recommendation of eating small meals and not drinking with meals. Despite this test, I know sometimes I suffer from gastroparesis (slow stomach emptying) because sometimes when I throw up, food that should be long gone is still in my stomach as evidenced by what I see in the toilet. (sorry if TMI). Interestingly, a gastro I later went to said gastroparesis can come and go depending on if I am in a flare up or not. Just because one test didn't find it doesn't mean I never have it. Preventative measure I take with my gastroparesis is taking a good digestive enzyme with heavier or more difficult to digest meals. I take a probiotic daily which helps me, but I know some feel terrible with probiotics. I also take a ginger supplement I got at Walmart at the first sign of stomach upset. If all else fails, Reglan helps me quite a bit as it helps your stomach empty more quickly.