Rachel

I'm not comfortable opening up username changes for a fee. Not everyone can afford to donate to DINET, and we want to serve all of our members equally, regardless of ability to fund DINET.

I took amitriptyline for a year for migraines, and it was helpful for me. The downside was that it messed up my sleep a little. I only took the med at night because of the sleepiness side effect. The first night I fell asleep within 15 minutes of taking it. After about 2 weeks my body had adjusted to the side effect of sleepiness, and it didn't make me sleepy for 2 hours. The tricky thing was that once my body got used to the med, I couldn't fall asleep at all within 2 hours of taking it. So I always had to plan out my bedtime and make sure that I took amitriptyline 2 hours before I wanted to sleep. If I forgot to take it until bedtime, then I wasn't able to fall asleep for 2 hours. It was a pain in that way, but otherwise it was very helpful for me in lessening migraine symptoms.

Hi Imre,

A forum administrator is able to change a username. This isn't something we do regularly unless necessary. Because we have so many members, we don't change usernames if someone wants a new name just for fun. However, if there is a good reason for the name change, then it is something we can do.

For example, we have changed names in the past if there was a concern about too much identifying information in a username. Please be aware, though, that if we change a username, the username history can be seen in the member's profile. If privacy or security has become an issue, the best course of action may be to delete a member account and create a new one.

If you believe that you need a new username or a new account, you can send me a PM to discuss it.

Thanks,

Rachel

Heather,

I take 800mg daily of magnesium oxide. I've never had an upset stomach from it, but that can happen to some people. I tried magnesium malate once, but that didn't work well for me. I'm actually very happy with magnesium oxide. It does cause my intestines to move a little faster, so I like that benefit. My guts are way too slow. If you don't need your guts to move faster, then a high dose of magnesium oxide might not be best for you.

Rachel

Hi Bayly,

That sounds like a rough month! Migraines can be relentless.

I have migraines too, with sensory overload and fatigue being the most debilitating of my migraine symptoms. 2 years ago my neurologist put me on amitriptyline for migraine prevention. He said it was the best for migraines with sensory overload. Previously I had been on Topomax, and it wasn't helping at all.

The amitriptyline did help with my sensory overload issues. I took it for about a year. After I was no longer having as severe of migraines, I weaned off of it. It was helpful for migraines, but it caused problems with sleep for me. Once my sensory overload wasn't as severe, I chose to suffer through the sensory problems instead of the sleep problems.

I have also found that a high dose of magnesium helps with headache prevention. It hasn't helped a whole lot, but there has been some benefit.

I hope you can find something that helps you too. Hang in there!

All the best,

Rachel

Thank you, everyone, for sharing your experiences.

Miriam, it is good to hear that you went to Mayo for this testing and found it to be worthwhile. I'm hoping that they will be willing to test and treat me for mito as well.

Hanna, I am considering Mayo because I now live in the state of Minnesota. Travelling to Mayo won't be as time and energy consuming as travelling back to Cleveland. I used to live in Kentucky, and Cleveland was only a days drive away, so it wasn't too bad. Now it would take about 3 days to get there.

Terry, I hope that you're appointment at Mayo in AZ will be beneficial. I wish you all the best!

Well, I just called the Sam's Club pharmacy, and they said they can't order saline.

$30 for a case?! Wow, I could afford that! The closest Costco is 4 hours away, but my husband does make a Sam's Club trip every couple of months. Sam's Club is only 90 miles away. We're in a small town in farm country, so my options are limited!

Thanks so much for the idea. I hadn't even though of buying in bulk. I will give the Sam's Club pharmacy a call!

Thanks for the information, everyone. I haven't found a way to get IVs in-home here, but I haven't given up on it quite yet. I would be able to get them at home if I were to pay for them out of pocket, but that gets too expensive at $75 per bag of saline.

Miriam, are you saying that Medicare will pay for me to take saline bags home if I get them through a hospital pharmacy? I wouldn't have to have the IVs administered at the hospital?

We don't even need a nurse to come. My husband can start an IV on me; all we need are the supplies. I can even start an IV if I have someone to help me. So I don't even need Medicare to pay for the nurse visit every time! The supplies are so much cheaper than an ER visit.

Chicago, it sounds like you are having the opposite problem from me! Your agency refused to bill for the supplies, which is all my agency said they could bill for. Am I understanding correctly that your part D insurance paid for your saline? That's amazing! I may need to change my Part D if that is the case. I really like my part D insurance, but I was told that they don't cover saline.

Thanks so much for volunteering to be in the Meet the Member column! It was a feature we did regularly a few years ago, but we haven't had anyone volunteer to be featured in quite a while. Thanks for sharing about your life with POTS.

Rachel

Welcome back, Miriam! It's good to hear from you again.

I don't know of anyone from DINET who is in Hawaii currently. I hope you're able to find someone.

Rachel

Hi Friday,

I don't know why, but this happens to me too. If I push my body too hard then I get small involuntary muscle contractions. If I really push too hard then I get all over convulsions like you describe. I'm going to Mayo next month. I can see if they have an answer to this!

Hmmm... I don't know. I've never had that problem before. I don't have a smartphone or ipad, though. I always use a laptop.

You could try using html code to break the paragraphs. If I remember correctly, the code for a break is < b r > You'll need to remove the spaces. I put those in there so that the code won't be translated into a page break and then not be seen.

<br>

Edited to add: Nevermind. I typed in the html code above to check, and it didn't work.

I don't know of an awareness color specifically for POTS. Blue is usually the awareness color used for dysautonomia. DYNA uses red and Dysautonomia International uses light blue for dysautonomia.

I just checked the forum search settings, and the maximum number of results allowed is 1000. I can't set it any higher. So if you're looking for something that isn't discussed as often, you'll likely find a lot or all of the posts. But if you're searching for something common then it will be hard to find it all. I can't find a way to change the search dates so that they go back before 2007.

That's the other problem with the current search feature. It will only bring up a few pages of results if you search for a commonly used term, such as POTS. If you narrow down the time frame to only a few months, you should be able to find the posts. It's a pain, I know! I miss the old search feature that would bring up all of the posts all the way back to the beginning of the forum, no matter how many pages there were.

I just discovered that we now only have the option of narrowing down a search back to the year 2007. That's a forum feature that I can't change. The old posts are still there, it's just really hard to find them. I was able to find an old post of mine from 2005 because I knew that I had used an unusual word. By typing that word into the search box, and narrowing the search down by member name, my post came up. It's not always possible to do that, though.

The search feature is tricky. The old one worked much better!

If you click on the little gear image next to the search box, it will open a form that will allow you to narrow down your search options. You can search for posts within a certain time period. You can also narrow a search down by member name.

Hope this helps!

Rachel

Thanks so much for sharing this!

Rachel

I just want to add that I had an epidural for my c-section. I was concerned about my blood pressure dropping due to the epidural, and I discussed this with my doctor and anesthesiologist well in advance. They allowed me to take my usual dose of midodrine before having the epidural. I don't know exactly what my blood pressure was during the time the epidural was in, but low blood pressure wasn't a problem for me at all.

With my first delivery I wanted to go as natural as possible. After laboring all night and all day, I was exhausted and desperately in need of sleep. I opted for the epidural, and my midwife also recommended pitocin because my labor wasn't progressing quickly enough. The epidural and pitocin were the best thing for me. I was able to get some much needed sleep, and because of the epidural I didn't feel the pain from the pitocin at all. I had heard that contractions with pitocin were rough, but I didn't feel them at all.

With my second delivery we planned on inducing so that I could avoid going into labor at midnight and not getting any sleep. Instead I had to have a c-section because my little girl was 10 pounds! The need for a c-section was determined two days before we were going to induce, so it was a planned c-section, not a c-section after a long, hard labor.

There are pros and cons both ways. With natural labor you have intense pain beforehand, with a c-section you have intense pain afterward. The pain levels are about the same in my experience. Having a c-section was less exhausting than labor, but having to stay in the hospital for 3-4 days made it really hard to sleep. You have nurses, doctors, cleaning ladies, and food service workers coming in all day long, and hospitals are noisy at night. I would have preferred to have a natural birth and then be able to go home the next day and get some good rest.

The risks are greater with a c-section, so it is good to avoid that if possible. Although, there are times with the benefits outweigh the risks. That's just something you and your doctor have to decide together. The goal is a healthy baby and safe delivery for both mom and baby. For some people that means a natural childbirth, and for some that means a c-section.

I hope that everything goes well for you and your baby.

All the best,

Rachel

Naomi,

There were a few minor abnormalities in my lab work, but nothing that was diagnostic. From what I understand it is pretty rare to be able to be diagnosed based on lab work alone. Usually patients end up having a muscle biopsy. I have had a skin biopsy, but not the muscle biopsy.

This is the lab work I had:

Mitochondrial Genome screening

lactic acid/lactate

CK Creatine Kinase

Comp Metabolic Panel

CBC+ auto diff

Methylmalonic acid

Ammonia BLD

Organic Acid Quan UR

Acylcarnitine QT PL

Acylcarnitine QT UR

Lymphocye CoQ10

TSH BLD

Cortisol BLD

Ferritin BLD

Iron+ TIBC

Vitamin 25 hydroxy

Amino acid quant BLD

LMG,

The supplements and vitamins that mito patients take are often referred to as "mito cocktails." The specific supplements and dosages vary from one patient to another. Here's a page on Mito Action that explains what some of the supplements commonly found in a mito cocktail are for: http://www.mitoactio.../mito-cocktail.

The supplements in my mito cocktail are CoQ10, alpha-lipoic acid, B2, and Carnitor. I never noticed a difference when I added in the B2, but with the other three I definitely noticed a small increase in energy and strength. There haven't been any huge improvements; I'm still mostly homebound. I still have days when I can't think clearly, have my muscles give out on me, or can't move due to muscle pain. But it's better than it was before the mito cocktail!

Angelloz,

I'm so sorry that Mayo Clinic turned you down. That must be really disappointing and frustrating. Do you have a doctor who could refer you? I wonder if that would carry more weight? Or maybe a place like Vanderbilt would be beneficial for you.

That's wonderful! I'm so glad for you! I'm sorry that you need it, but what a relief to be approved.

Rachel

As a reminder to everyone, forum posts dealing with a bad experience with a doctor or at a hospital must be brief and general in nature. Defaming doctors and hospitals on the forum opens DINET up to liability. In order to protect our members and the future of DINET, we cannot allow disparaging remarks to be made when a particular doctor or hospital is named.

Thanks, everyone, for understanding, and for helping to keep the DINET forum as a resource for us for years to come!

From the forum rules:

Doctors and Hospitals

You agree to refrain from making disparaging remarks about hospitals or medical professionals on this forum and to refrain from naming doctors or hospitals when elaborating on negative experiences.

Clarifications: It is fine to make a general statement, such as "I had a negative experience with Dr. ____ ," however, per forum rules, statements naming a particular doctor or hospital cannot be defamatory in nature.

Defamatory: "1. Harmful and often (but not necessarily) untrue; tending to discredit or malign."

You may elaborate on negative doctor or hospital visits as long as the particular doctor or hospital is not named, and therefore not defamed.