Rachel

I've been diagnosed with hypermobility/EDS III. It was actually found and diagnosed a few years before I first noticed POTS. My cardiologist suspects that I have hypovolemia also, but I have never been tested for it. I've never been told that the combination of the two was life threatening. Rachel

It is my understanding that medications should be good for 6 months after the expiration date. That is the rule of thumb that many pharmacists and doctors have given. Most likely the only thing that would happen over a longer period of time is that the med would lose potency, although a few do become more potent. You can check with your pharmacist to make sure that the midodrine is still okay. I hear you on not wanting to throw out expensive medication! Rachel

Patty, I do know of at least one person whose blood pressure was raised too much (though not dangerously high), and she couldn't tolerate a 2.5mg dosage of midodrine. Did your doctor say to start out at a 10mg dose? Usually midodrine is supposed to be titrated up until you find a good dose. I wouldn't recommend starting out at 10mg. Usually someone starts at 2.5mg, and then goes to 5mg a week or two later if 2.5 was tolerated well. If 5mg still doesn't help, then the dose is upped to either 7.5mg or 10mg. I hope your doctors can find out the reason for your bp spikes. Rachel

White fading into scarlet at the bottom sounds perfect for us! It describes us well, and it would be unique as far as ribbon colors go.

Hi Janey, So sorry that your tummy and guts are giving you such trouble. I have found that Miralax is the most helpful for me. I have to change my dose sometimes as my symptoms fluctuate, but I can usually keep myself regular with that. I haven't found anything that completely prevents GI flares. I eat a low fat, low fiber diet, and that helps. But I still have periods when my gastroparesis will flare up, and then I have to go on a primarily liquid diet for a few days. After a while I can return to my normal low fat/low fiber diet. Peppermint tea and ginger root capsules help me with nausea. Things I avoid are Senokot and other stimulant laxatives (the body becomes used to them over time, and then you need more for the same effect). I avoid most fiber because of gastroparesis, but I have also found that fiber hurts my guts too. If I have too much fiber in my diet, then my guts just can't move. I know it sounds counterintuitive. A common remedy for constipation is fiber, but it creates too much work for my guts and they can't do it. I hope you can find some relief for your GI symptoms and migraines. Rachel

I take 10mg every four hours during the day. A smaller dose doesn't give me any noticeable benefit. Midodrine is a vasoconstrictor. That means that it helps your blood vessels to constrict, thus pushing blood back up to the top half of your body. Midodrine raises blood pressure, so some people can't take it if they will be lying down. It doesn't raise my supine bp, though, so I am allowed to lie down as much as I need to while taking midodrine. Rachel

In a single word - Exhausted.

Congratulations!!!!

Thanks, Sophia. How could I be coming here for all these years and then still forget about chocolate milk?! I'm glad you have reminded me. I'm getting tired of Gatorade.

I hope that everything goes smoothly tomorrow for Erika. I'll be thinking of her.

Here are things that help me to manage my nausea: - Small, frequent meals. Just crackers and tea when nausea is more severe. - Peppermint tea - Ginger root capsules - Lying down very still on my side Rachel

I used to avoid milk because it made my heart pound too hard. I would feel uncomfortable in my chest for a couple of hours. It doesn't do that to me anymore, and I'm really glad it doesn't. I have milk and/or ice cream daily now. It is the easiest way for me to get a little bit of protein in since I can't digest meat as much anymore. If you feel better when you give up dairy then it could be worth giving it up. If you find that it is beneficial for, though, then there probably isn't a reason for you to quit dairy. Rachel

I go to bed at 8pm each night. It takes me a long time to wind down each day. I have to have a few hours where I am lying still in a fairly quiet room before I can go to sleep at night. Then around 11pm or 12am I take my melatonin, and I can usually fall asleep about half an hour after that. I can't sleep at all without the melatonin. And if I don't get my 3 or 4 hours of quiet time, then I can't usually fall asleep until 2 or 3am. Quiet, rest, and melatonin are all three necessary for me. I hope you can find a night time routine that helps you. Rachel

I don't have any advice for you. I just wanted to say that I hope the procedure goes well today, and I hope that the nerve block is very helpful for you. Rachel

A couple of my specialists believe that I have a mitochondrial disease. Mito can cause dysautonomia. If I do have mito, then my dysautonomia is a symptom of that. The specific things that made my doctors suspect mito are: early onset of symptoms, cyclic vomitting as a child, severity of symptoms, progression, and lack of response to treatment. Rachel

My weight doesn't vary much over a short period of time. I am 2 or 3 pounds lighter in the morning than in the evening. It is that way every day, no matter if it is a good day or a bad day. Over longer periods of time (5 months or more) my weight varies by 20 pounds. I am always within a healthy BMI, but I feel a little bit better when I'm on the upper end of my weight fluctuation. Rachel

Thanks for starting this thread. It is important to note that for most of us POTS is certainly not due to deconditioning. I have only ever known of two people who had POTS or NCS because of deconditioning. If POTS were due to deconditioning I never would have gotten sick in the first place. I used to swim 3 miles a day, 5 days a week. Looking back I can see that I had symptoms even as a young child. The exercise intolerance just didn't start until later. There were times in middle school and high school that it was hard to keep up in swim practice. The exercise that I had been doing certainly did not protect me from a relapse. Later on in college when my dysautonomia had gotten worse I sometimes had a hard time sitting through an entire class. It wore me out. I'd be weak, tired, and faint. I could, however, go hiking or do other activities. As long as I was moving I was okay. Today I have exercise intolerance. I can exercise very little, and I always pay for it for 1-5 days. I do think that our symptoms can get worse if we are deconditioned. When I had to be on bed rest for a week during my pregnancy I was amazed at how deconditioned I became in just that one week. It took me two weeks to get back to baseline. Rachel

My nails used to always be soft, and they would split, peel, and chip. A few years ago I started taking calcium regularly, and this seems to have helped my nails. I wouldn't classify my nails as hard, but they aren't quite as soft anymore either. They do still have ridges, and they do still split sometimes. I have very little peeling and chipping now. Rachel

Hi Sara, Welcome to DINET. I hope that you find a lot of help, information, and support here. I too have problems with sleeplessness. At one point I went to a sleep specialist regularly, had sleep studies, and tried lots of different sleep meds. I can rarely sleep more than an hour without sleep meds, but most medications also left me too groggy in the morning. In the end, I found that melatonin works the best for me. I take it nightly now. It helps me to sleep, but doesn't make it as hard to wake up in the morning. Things that help me with nausea are: peppermint tea (this is the biggest help for me), ginger root capsules, small meals, and not remaining upright for too long. I hope you can find some helpful treatments. Rachel

Although PACs can feel uncomfortable, they are benign. 2,200 sounds like a lot, but consider the total nunber of heart beats you have in a 24 hour period. It is probably well over 100,000. The 2,200 PACs probably make up less than 2% of your total heart beats. Rachel

I always have my water bottle with me. I also carry Propel packets and add those to my water if necessary. I try to keep low fiber granola bars in my purse so that I am never without food if I need something. Pudding cups and juice boxes are also good snacks for me to keep around. Before my gastroparesis got too bad I would keep almonds and/or peanuts handy. There have been times I've been caught without food (like when I had eaten the snacks during a previous outing and forgot to replenish my stash). In those cases, a run through the drive through for a milkshake at McDonald's or a Vivano at Starbucks becomes necessary. Don't be shy about taking what you need wherever you go, even if it is to a movie theater, a concert, or a nice store. I have found that people are very understanding if you have it with you for medical reasons. Rachel

So sorry. Brain fog can be my most discouraging and disabling symptoms. I recently had a bad bout of brain fog because I had tried to do too much thinking, reading, and studying (all while lying down). It took several days of extra rest and no reading to pull out of it. I laid in bed a lot and watched brainless tv shows. Have you ever tried Cerefolin? It has been a help to me with the brain fog. It doesn't completely take it away, but it certainly helps. Wishing you less foggy days, Rachel

I started taking Provigil about 3 years ago. Sometimes I would plan ahead to use it if I knew there was a big day (for example, if I needed to go to a wedding). Other times I would use it if I woke up and was having a really bad day energy wise and I needed an extra boost to make it through the day. My sleep specialist warned me that Provigil usually stops working for people after 4 or 5 years even if they don't take it daily. It stopped working for me after 3 years, and I couldn't even take it for a year of that time because I was pregnant and nursing! I had been looking forward to being able to take Provigil again, but I have recently tried it a couple of times and it doesn't help me anymore. So here is a heads up to anyone who is on Provigil. It might stop working for you after a while. Rachel

You're in my thoughts and prayers, Nina. I'm sorry that life has been so tough lately. I pray that you will find a lifeline soon. Rachel

I'm glad y'all have posted about this. Thanks! I never would have known otherwise. I have tried watching House a few times, but found it too stressful. A show about a doctor with a bad bedside manner was not relaxing for me! I've heard that House has mellowed down some now, though, so maybe I should try watching it again. Thanks for sharing the link, TypewriterGirl. I'll be watching the episode soon, I hope. Rachel