Rachel

I'm so glad to hear that Kayleigh is doing so much better than she was 6 months ago. Yay for getting to go back to school!

I really like the song, "Blessings." It's beautiful. Thanks for sharing.

Rachel

It sounds like you have a very messed up circadian rhythm. Mine is delayed by a few hours, but not as badly as yours. It's so hard when your body is telling you to sleep when everyone else is awake.

Have you ever had a sleep study? That may be beneficial in pinpointing specific sleep disorders.

I have tried numerous treatments for sleep - everything from different meds to natural supplements to orange glasses that make your body think it is night time. The only thing that helps me consistently is melatonin. I take 3mg every night. It helps me to fall asleep and stay asleep without making me groggy in the morning like sleep meds do.

I sure hope you can find something to help. It's no fun to continually battle a messed up sleep schedule.

Rachel

Firewatcher gave some very good advice. I hope that your appointment goes well and that you get the answers and treatment you need.

Rachel

I worked as a candystriper at a hospital for a couple of years, and I was an in-home caregiver for a year for lady with MS. My medical training was very little, though, and all of those jobs were post POTS/dysautonomia diagnosis. I really enjoyed working with patients. If I ever get better, I would love to go work in a hospital again.

Nice! I'm so glad you have a cooling vest to help you. They can make a big difference. Mine has been such a huge help to me. I will never do summer without one again!

I have a neck wrap and a vest, but I had never seen wrist wraps before. Those look great. How long do they stay cold for you?

Rachel

Dear Ann,

My heart goes out to you. It is difficult for any of us to live with dysautonomia, but I imagine that it must be so much harder for you to have to watch your little baby suffer from this. I remember you posting last year, and just two weeks ago I was thinking about you and wondering how things were going. I am sorry that there hasn't been improvement.

Dr. Rowe at Johns Hopkins is one of the best specialists for dysautonomia, and he sees only pediactric patients. I don't know how young of patients he takes, but I do know that cares for some dysautonomia patients with very complicated cases. You can find him here: http://www.hopkinschildrens.org/staffDetail.aspx?id=3226

The other place that you might find helpful is the Akron Children’s Hospital, specifically their NeuroDevelopmental Science Center. Dr. Bruce Cohen is there now, and he has a great team of doctors. Dr. Cohen used to be my doctor when he was at the Cleveland Clinic. He is brilliant. My husband tells everyone that Dr. Cohen is the smartest man he knows.

"In his role at Akron Children’s, Dr. Cohen will partner with neurosurgeon Roger Hudgins, MD, and developmental-behavioral pediatrician John Duby, MD, in the clinical leadership of the Akron Children’s Hospital NeuroDevelopmental Science Center. This center brings together a wide range of pediatric specialists, including developmental-behavioral pediatricians, neurologists, neurosurgeons, neuro psychologist, psychologists and physiatrists, to care for children with ADHD, cerebral palsy, Down syndrome, epilepsy, Fragile X, head injuries, muscular dystrophy, neonatal follow-up, and spina bifida."

From: https://www.akronchildrens.org/cms/news/501ba6b5ce1ad963/

I wish there was more I could do to help. You will be in my thoughts and prayers.

Rachel

Hi BellaMia,

It will be an adjustment, but I know you'll get through it. It's hard to give things up. Hopefully you will gain more freedom by having the picc line so that it doesn't feel like such a sacrifice.

I have never had a picc line, but on numerous occasions I have had a peripheral IV left in at home for a few days. I was responsible for keeping it clean, flusihing it, starting my IVs, and covering the line for a shower. At first it takes a lot of thought, but soon you can do it without thinking about it. It just comes naturally.

For showers I used Glad Press'n Seal. I wrapped it around the IV site on my forearm, and then I taped the edges and the seam down. I also tried to keep my arm out of the water as much as possible during the shower. To be honest, it was a pain. And that site was in my forearm. I think it would be a little trickier to keep the picc line site out of the water since it will be higher up on your arm. Using a handheld shower nozzle could make it easier to keep the water where you want it so that it doesn't run over the covered picc line site as much.

A friend once told me that she found it easier to deal with a port during showers than a picc line. So if it is really hard with the picc, at least soon you'll be getting a port, so may that will make it easier.

Dani's suggestion to wash your hair in the sink was a good one. If you are able to bend over long enough to do that then that would probably be easier than trying to wash your hair in the shower.

You won't be able to go in a pool or the ocean with the picc line, but you could go in up to your waist, or at least put your feet in. I think gardening would still be a possibility too. You might not want to garden in a tank top, but if you put on a shirt with short sleeves or 3/4 length sleeves then you should still be able to put your hands in the dirt to garden. Just wash them carefully when you get back inside.

Blessings,

Rachel

Hi Kelly,

If you are looking for doctor recommendations you might want to check out the Physicains List on DINET if you haven't done so already.

Rachel

Hi BellaMia,

I hope that the picc line insertion goes smoothly for you, and I hope that you will be able to feel a little better once you can get IV fluids every day.

You'll really like having a pump in a bag that is portable. This is how I have done my IV fluids, and it is so convenient. You can move around and go places, all while hooked up to your IV! And it's hardly even noticeable.

You mentioned getting your room ready to be an infusion clinic. You might also want to clean out a space in your refrigerator. To use a portable pump you have to have all of the air taken out of the saline bags, and then they have to be stored in the refrigerator.

You probably won't need to make too many changes to your bedroom. You'll just need some space cleared out of a drawer or cabinet so that you can store your supplies. You may want a small basket of things you might need often on your nightstand (hand sanitizer, alcohol swabs, saline flushes). If you will sometimes be using a regular IV pump, not just the portable pump, then you'll need room for an IV pole. You'll probaby want to have a trash can closeby also.

I wish you the best,

Rachel

Lots of fluids and lots of rest is what helps me the most. Gatorade, chicken noodle soup, hot V8 juice, water, and apple juice are some of my favorites. I spend a lot of time in bed while my body regains some strength. My husband also starts an IV for me, and the IV fluids really help. I don't know if IV fluids are an option for you, but if you are really feeling dehydrated you could probably go to the ER and get a liter or two of fluids.

I hope you will be feeling better very soon.

Rachel

Midodrine is the only drug that I have noticed a difference with between brands. Mwise, that is interesting that you have to be on the Mylan brand of midodrine. I'm the exact opposite. Mylan hardly helps me at all. Global works better for me than any other brand of midodrine that I've tried.

Rachel

I haven't noticed a change in heart rate while taking midodrine. All it does for me is raise my blood pressure.

Rachel

For me Senokot actually makes things much worse. My intestines can't handle that much fiber. Several years ago I was using Senokot, and because it wasn't helping enough I added in Miralax. The Miralax didn't help at all at that time because I was still taking the Senokot. Eventually I discovered that I do best with just Miralax. If it has been a few days and I still haven't gone then I use a glycerine suppository. That usually fixes the problem right away.

For a couple of years I used Amitiza. It works neurologically to tell your intestines to move. Even that wasn't all that helpful for me, though. I had to stop Amitiza when I got pregnant, and that is when I discovered that just plain Miralax worked best for me.

I hope you can find something that helps K soon.

Rachel

Hi Tennille

I tried Mestinon several years back. I felt okay for the first day or two, but after that I continued to get worse and worse. After a week or two on the Mestinon I was so weak that I couldn't walk. I stopped the medicine and quickly returned to "normal" for me. I was still disabled and mostly homebound, but at least I could walk around our tiny house again.

I hope you can figure out what is going on and what is causing this flare in symptoms.

Rachel

I was homeschooled for most of my life, and it worked out very well for me. I was homeschooled for all of high school, which turned out to be a huge blessing because my POTS had some pretty bad flare ups during that time. There is no way I could have kept up in a "brick and mortar" school because I would have missed so many months of class.

Good things about homeschooling:

- You can work at your own pace. You aren't held back by the class if you are ready to move on, or you can spend extra time on a subject if necessary.

- Time is flexible. You can start at noon if you need to, or you can take an afternoon nap if you need that.

- Location is flexible. I usually did my school work while lying on the family room floor or while lying on the sofa. That was SO MUCH EASIER than trying to sit up at a desk all day!

- You don't have to wake up early or work on homework late at night.

- You can get your school work done in less time than it takes at a "real" school.

- It is much easier to travel for family vacation, to visit relatives, or to go to the doctor. You don't have to worry about getting behind in school. It can go with you, or it can wait for later.

- If you have a bad week or a bad month, you can just postpone school for a while, or you can do a very light workload.

- On a good day you can get some extra school work done.

Bad things about homeschooling:

- You don't get to do school with all of your friends. However, if you have homeschooled siblings or friends, then you can have a lot of fun there.

- You may not be able to participate in school activities like homecoming, sports, prom.

Depending on where you live there are likely homeschool organizations nearby. I did lots of activities with homeschoolers growing up - gymnastics, ice skating, choir, science convention, field trips, etc. There are plenty of options if all you can handle is a class or activity once a week. Also, depending on what public schools are nearby, your son may be able to take just a class or two there. Public schools are not required by law to offer this, but some do have the option. If you son still wants to go to school with his friends he might be able to just take one class at his old school and do the rest through homeschool.

If you want any more information or helpful resources for homeschooling, let me know.

I hope that you are able to find an option that will be suitable and beneficial for your son.

Rachel

I'm so glad your daughter is home and that she has a good treatment plan in place.

Rachel

I take midodrine even while lying down, and it has never raised my bp too high. My blood pressure has never gone over 120/80 while lying down even if I had taken midodrine an hour before.

It might be worth testing one day to see if you can lie down while midodrine is in your system. Naps are important, but good blood pressure is important too!

Rachel

Thanks for sharing, Katherine. That's a good document.

If I tried every "miracle cure" that I have been told about then I would never have time to try proven treatments. It seems that several times every year well-meaning friends or acquaintances tell me about a doctor who can cure anything, "magic mushrooms" from South America, or special drops that cure disease, just to name a few. There is so much bogus stuff out there, and we have to be careful to discern what is wise and potentially helpful treatment.

Rachel

Those stockings look so fun! I wish they came in stronger compression though. I have to wear 30-40, and the highest I saw on RejuvaHealth was 25-32.

The coolest compression I have found is the 770 series from Sigvaris. They are very thin, but very strong. The material breathes much more easily than any of the other styles and brands I have tried. You can find the 770 series here: http://www.ameswalker.com/si770se.html I haven't tried the toeless one in the 770 series, so I don't know if it is as thin as the regular compression hose. Toeless stockings usually tend to be a little thicker.

If your blood pooling happens mainly in your abdomen then you might be able to get away with the compression capris. On the really hot days I do just wear abdominal compression sometimes. I know that I have a lot of blood pooling in my feet because they turn purple whenever I am not lying down, and when I stand up my ankles swell half an inch within 2 minutes. But most compression stockings are so uncomfortable in the heat that I go without them.

I did go out yesterday evening in the Sigvaris 770 series. It was 94 degrees and the 770 compression was still pretty comfortable. Of course, I didn't stay outside long. I went straight to our air conditioned van, and then I went straight into someone's air conditioned house.

Rachel

Very interesting. Thanks for sharing, Firewatcher!

POTS is a type of dysautonomia. Dysautonomia is an umbrella term used to describe a dysfunction of the autonomic nervous system. Many different diagnoses fall under the category of dysautonomia. Not every dysautonomia is POTS, but POTS is always a kind of dysautonomia.

You can find more information about this on the main DINET site: www.dinet.org.

Hope this helps.

Rachel

Happy Belated Birthday! I'm sorry it has been such a rough week.

Topamax can cause some really strange symptoms, so the new symptoms that you have could be a result of the new med. Some people are really sensitive to Topamax and have to start out with the sprinkles dose and slowly work up to a full dose. Even though you stopped the Topamax you could still be experiencing some side effects from it.

I tried Topamax last year, and it was really tough to get used to. The side effects are strange. I ended up having to stop the med and find a different treatment for migraines.

I hope that the MRI will give some helpful information to your doctors, and I hope you feel better soon.

Rachel

Hi Naomi,

That's strange! The link brings me to the DINET page, both when I am logged out of facebook and when I'm logged in.

You can probably find the page pretty easily by searching on facebook. Search for "Dysautonomia Information Network." Make sure you go to the one under the pages category, and not the old one under the group category. The group will be deleted soon when facebook archives all groups in the old group format, but the Dysautonomia Information Network page will stay.

Hope you can find us!

Rachel

Has your daughter been tested for gastroparesis? This could explain the feeling full quickly. If she has gastroparesis a liquid/soft foods diet would help.

There are also some who are sensitive to milk protein. Eliminating all dairy from her diet (milk, yogurt, butter, whey, casein, etc.) could help to increase her appetite. Dr. Rowe at Johns Hopkins recommends at least a one month dairy free trial for his patients who have dysautonomia and gastrointestinal symptoms.

I hope you can find something to help her.

Rachel

1. Lack of energy (not fatigue, but lack of energy to begin with)

2. Brain fog on good days, confusion on bad days

3. Muscle weakness

4. Blood pooling

5. Sleep disorders