Rachel

Naomi, I have to use a wheelchair because of muscle weakness and insufficient energy. I am able to walk around my small, one story home on most days, although I do often use a walker. I use a wheelchair when I leave my home because I am unable to walk a significant distance or stand in line. I'm hoping to be able to use my new wheelchair in the kitchen to make it easier/possible for me to get food. The doctors aren't sure what type of dysautonomia I have. I was diagnosed with POTS in the past, but tachycardia is no longer a problem for me, and my doctors have agreed that POTS isn't an accurate diagnosis. It appears that my dysautonomia is due to a mitochondrial disease, and I'm in the process of pursuing a diagnosis for this.

Corina, thanks for the information! It is helpful to know that your wheelchair is a snug fit but still comfortable. Do you find that the snug fit makes it messier for you in the winter? Do you get snow, ice, or mud on your clothes from the wheels being so close to you? Or do you have wheel guards to protect your clothes?

I am in the process of getting a new wheelchair. I currently have a lightweight folding wheelchair, and I am considering getting an ultralightweight rigid wheelchair this time. My insurance only pays for a new wheelchair every 5 years, so once I get a new chair I'm stuck with it for a while. I really want to make sure that I get just what I need. Do any of you have a rigid wheelchair? If so, I'd like to hear what you like/don't like about it.

First, I have a question for any of you who use a wheelchair.

1. How much space is there between the widest part of your hips/legs and the side of the seat? Do you get a chair that is as narrow as possible, or do you get one that allows a bit of wiggle room?

Currently I have an extra inch and a half on each side of my legs before the edge of the seat. Then there is another inch or so of space between my seat and the wheel. My OT told me that she thought I could go down an inch or two on my wheelchair size. Another person said that he would recommend the same width seat. I don't want to feel squished in my chair, but if I could go a bit smaller that would make it easier to get through tight spaces, in and out of doctor's offices, etc.

Now for more questions:

2. Do you have swingaway armrests? Are they comfortable to rest your arms on?

3. Do you have an angle adjustable back rest or a folding back rest? What are the pros/cons to this?

4. Do you have swing away foot rests? Or do you have a one piece foot board?

5. If you have a foot boad, is it tucked in under the chair a little? If so, is it comfortable? Does it make blood pooling worse?

6. If you have swingaway armrests (or no armrests), do you have clothing protectors between the seat and the wheel? Do these work well enough in the winter to keep snow, slush, and mud off of your clothes?

7. What is the brand and style of wheelchair that you have? Overall, have you been happy with it?

Sorry for asking so many questions! I like to be well informed. Thanks for any help you can offer!

Rachel

As far as I know there isn't an official color, so it gets confusing, doesn't it?! I have usually seen blue associated with dysautonomia, but you are right that DYNA has red ribbons.

The tweet-a-thon was great fun! Thanks to everyone who joined in. It was really neat to see so many people with dysautonomia get together and tweet for awareness. We may be tired, sick, and/or homebound, but we can still be seen and heard!

Naomi, I saw several tweets from you! They went through just fine. Sometimes it takes a few seconds for them to load, and with all of the #dysautonomia tweets at once it may have taken a moment for your tweets to show up on the #dysautonomia stream.

10 Minutes until the tweet-a-thon starts! See you over on twitter!

Rachel

The tweet-a-thon is coming up tomorrow!

If you're joining in, feel free to share your twitter name so that we can follow you! If you don't want to share it here, but you want DINET to follow you on twitter, you can send me a PM with your twitter name.

DINET's twitter name is @DINETorg

My personal twitter name is @cttRachel

Feel free to tweet earlier in the day if that works better for you in your time zone. I wouldn't want to wake up at 1am either!

Dysautonomia SOS has invited DINET to join them in a tweet-a-thon this Sunday, October 28th! Claire has been planning this for many months, and I'm excited about joining in on Sunday evening.

We'd like to get #dysautonomia trending on twitter, spread awareness, and thank research centers for researching dysautonomia.

Want to join us? Find information about the tweet-a-thon here: http://dysautonomias...nomiatweetathon

I have gotten the flu shot a few times, and I have tolerated it well. My arm is sore for a few days after, but that's all.

I'm so sorry you have the flu right now. That's miserable. I hope you'll be feeling better soon.

Rachel

Gabe is choosing to do fundraising along with his marathon. People are donating money for him to run, and the donations will be given to DINET.

DINET is a nonprofit organization, and although we are run by volunteers, it does cost money to keep DINET going. There are costs associated with web hosting, yearly forum costs, fees for filing nonprofit paperwork, office supplies, etc. There have been t-shirt sales in the past, and the money raised from those went toward making the POTS documentary. We've saved up money to build a new website and revamp the Meet Others program. Once those big projects are completed, it would be great to move on and do more projects! We just have to have money and volunteers.

Gabriel is going to be running in the NYC Marathon November 4th in honor of his father who passed away from MSA. He is using this as an opportunity to raise MSA awareness and to raise money for DINET.

You can see his website for the marathon here: http://www.crowdrise.com/fightmsa

Thank you, Gabe, for your hard work and fundraising efforts! I hope the marathon goes well!

Rachel

I use 3mg of melatonin every night, and this helps me a lot with falling asleep and staying asleep. I've tried prescription pills, which give me a great night's sleep, but they leave me too groggy the next day.

If I'm nauseated at night, I have found that a cup of peppermint tea and/or ginger root capsules help a lot with the nausea. Sleeping on my side makes me less nauseated, too, than sleeping on my back.

I hope you can find something that helps you. Nausea and insomnia is not fun!

Rachel

Haha! Sorry our forum quirks are driving you nuts! The "like this" feature is something that came with the latest upgrade, and by default it is disabled.

We currently have that feature disabled on the forum. There isn't a way for us to remove the "like" button, though.

I drank one cup of coffee per day during pregnancy. We make strong coffee, so it had more caffeine than a typical restaurant or household cup of coffee. I didn't rely on coffee alone for a blood pressure boost, but it did help.

I hope you can find something that helps you and that you're comfortable with.

Rachel

Congratulations! I'm so happy for you. The pictures look great, and it looks like you had a wonderful day. Rest and recover well!

I buy compression hose from AmesWalker.com. If you get on their mailing list then you will receive notices when they have sales.

If your daughter wants fun prints, these might work for her: http://www.rejuvahealth.com/eshopping/style/pantyhose.html Unfortunately none of their patterned compression hose goes above 20-30 compression, so if your daughter needs 30-40 then the fun prints won't be strong enough for her.

I hope you can find something that works well and fits within your price range.

Rachel

Profiles only display the last 5 posts and the last 5 topics. If you are looking for a post written by a specific member you can do a search and narrow it down writing the member's name in the "find author" space.

My sister has POTS. As far as we know there isn't a family history of dysautonomia prior to us.

If you try uploading a small file it will probably work for you. Pictures have to be less than 100KB.

From Sunfish's topic, Helpful Hints:

Adding a Photo:

You may also notice that many members have a picture with their profile. If you have a picture of your own that you would like to use, you may upload it to the forum through your Settings. To get to your settings, click on your screen name at the top right corner, and a menu will drop down. Click on "My Settings." You will then be in your general account settings. Click on the gray button that says, "Change your photo..." You may upload a photo that is less than 100 KB. If you have a Gravatar, you may link to this for your profile photo.

Hi Naomi,

I'm glad you liked it! CHANGES was made by DINET a few years ago. It was directed by Michelle Sawicki and Alexia Anastasia, and it was edited by David Meiklejohn.

I do plan to put it on the DINET website, but that will have to be in the future. We have some major work to do on our website. It is currently in an old format, and I can't access it from my computer. There are few ducks still to get in a row, but after that fixing the DINET website is at the top of my DINET to-do list!

Rachel

A tool that I have found helpful is the Drug Interaction Checker. You can type in all of the medications that you take, and it will let you know if there are potential risks and how great the risks are. This shouldn't be substituted for talking with your doctor, but it can be a helpful place to start. If something comes up in the interaction checker then you will have something specific to ask your doctor or pharmacist. Drugs.com gives the following disclaimer when you check your medicines and the interaction checker doesn't find any risks: "No results found - however, this does not necessarily mean no interactions exist. ALWAYS consult with your doctor or pharmacist."

You can also find a list of drugs are known to react with a particular medication. Here I did a search for Midodrine Drug Interactions. You may find that list helpful.

Everything is still here, but the new search feature makes it difficult to access older posts. If you type in something common, like "POTS", then only a few pages of the most recent topics come up. To get to an older post about POTS you have to specify the month and year you want to search through. Narrowing a search by member name also helps to more quickly locate the one you are looking for.

Hope this helps!

Rachel

Forevertired,

I was first prescribed IV saline by Beverly, Dr. Grubb's nurse practitioner. I asked her if that would be something I could try. My health had gotten a lot worse, and I was bedridden 21-23 hours a day. The weakness, fatigue, and brain fog were intense. Even while lying down I was often on the verge of fainting. My gastroparesis flared up, and I could no longer drink enough fluids. It was a scary time, and my health was in a very fragile state. We were trying anything we could to help my body recover.

My initial prescription from Beverly was for IV fluids once a week. My local cardiologist then got me set up with in-home nursing and IV fluids. At that time she upped the prescription to 3 times a week. The fluids were one of the biggest helps for me as I recovered from my "crash" as I call it. My cardiologist had a few other POTS patients who had success with IV fluids, and I think that helped. Since she knew it was beneficial, she was very willing to do IV fluids long term with me.

I have Medicare, and it covered my in-home nursing and IV fluids completely, which was a huge blessing. IV fluids and home nursing are expensive.

I hope you are able to get the help and insurance coverage you need.

Rachel

Oh my goodness! I have never heard of such a severe allergy to midodrine! How scary. I'm so glad you figured out what was going on. Thanks for checking in with us. I've been wondering how you were doing. I hope that you'll be able to keep in touch now that you have an iphone with a data plan. Yay!

I hope that things go better without the midodrine. Have you ever tried compression hose? Maybe that would be a good way to help keep your blood from pooling without the severe allergy risk.

Take care, rest well, and feel better soon!

Rachel