Rachel

Thank you, everyone. It is a pleasure to serve you all. DINET was a huge help to me back in 2004 when I first found the website, and I'm so happy to have the opportunity to help out now.

I can't take credit for the website. Michelle Sawicki is the one who researched and built the site. I am grateful for all of her hard work over the years.

ArizonaGirl, we'd love to have you join our volunteer team whenever you are able. Just let me know!

I want to add my thanks to all of you DINET moderators and volunteers. I couldn't do this without all of your hard work. You are greatly appreciated!

Cute! Merry Christmas to you too.

Thanks so much for posting this, Nina. I was wondering what was going on with midodrine.

It's a necessary medicine for so many of us, and it would be awful to have it taken away.

Do episodes like this happen often while you are sleeping? I'm wondering if a sleep study would be helpful. It could show what is going on in your brain, with oxygen levels, and with your heart rate during those episodes. If you can get a sleep study that also monitors your blood pressure, that might be helpful since you think your bp is dropping. Of course, sleeping with a bp cuff going off automatically every 10 minutes is hard to do!

It would be good to check in with your doctor and let him know of the recent changes in your health. I hope you can find the answers and help you need.

Rachel

The brand I have is ReliOn. It has a manual inflate, which made the price cheaper. I don't think it is one of the "better" brands, but it has always been accurate when we have compared it with the manual blood pressure cuff and stethoscope method.

If I am alone and not feeling well it is really hard to inflate the cuff on my own. If you are able to afford an automatic inflate, then that feature could be very helpful.

Blood pressure cuffs can be pricy, but if you keep your eye out for a sale then you will probably be able to find a good deal somewhere.

Yes, that happens to me too. I always shower with a shower stool now, and this makes it much easier for me. When necessary, I run cold water on my legs and feet to help the veins constrict so that I don't get so dizzy.

After a shower I usually have to lie down in bed for a little while to recover.

Rich,

I usually wear knee high compression. I also wear mid-thigh to waist compression from Spanx. I get the strongest compression they have, but it isn't graded like the medical compression. I would guess it to be about 30mmHg.

I used to wear thigh high compression, but am no longer able to do so. I have also tried waist high compression in the past, but it it caused stomach pain. I need 40mmHg on my legs, but only 30 or so on my stomach.

I find that with compression I am generally able to be upright for about twice as long as without compression. So instead of being able to stand semi-comfortably for one minute, I can safely push it to two minutes with compression on. Instead of only being able to sit in my recliner for an hour, I can sit for closer to 2 hours with compression.

Rich,

Compression stockings and midodrine help to lessen the blood pooling for me. I wear 30-40mmHg compression, and I take 15mg of midodrine every 3 1/2 to 4 hours.

Rachel

From what I understand a Chiari 1 malformation doesn't show up at birth. It is something that comes later on in life. The severity of symptoms can vary depending on the severity of the Chiari.

Here are some links that might be helpful:

http://www.mayoclinic.com/health/chiari-malformation/DS00839

http://www.ninds.nih.gov/disorders/chiari/detail_chiari.htm

Hi Jen,

I'm sorry you're having so many headaches. Have you ever been tested for a Chiari Malformation? When you said that the headaches are at the base of your skull, and are made worse with coughing, it made me think of Chiari. Others have described the Chiari headache in that way. Chiari has been discussed here in the past, so you might find some helpful topics in a search.

I have pain sometimes in/behind my eyes. My doctors determined that it was a migraine causing that pain.

I hope your doctors can figure out what is causing these different types of pain that you are experiencing, and I hope that you will be able to find good treatment and relief soon.

Rachel

Hi Annaliese,

I don't remember having any discoloration in my feet and legs years ago, but I certainly do have it now. My feet turn very purple if I stand up for long. You can see pictures of my feet normal colored and turning very purple here: http://www.cranberry...es-of-pots.html

I have measured my ankles, and after only two minutes of standing my ankles increase in size by 1/2 an inch due to blood pooling. At two minutes the color of my legs hasn't changed all that much, but the pooling is certainly there.

Oh, I'm so sorry. What a scary ordeal. I'm glad to hear that she is doing a little better today. I will be praying for Kayleigh, for wisdom for her doctors, and strength for you.

Rachel

My vitamin D is on the low side. It has dipped below normal in the past. I'm rarely able to spend time outside, so that makes it hard to soak up vitamin D. I take vitamin D supplements. I have recently increased my vitamin D supplement (with my doctors okay) to try to get my vitamin D up in the higher range of normal, or at least in the mid-range.

DINET doesn't have a comprehensive list of types of dysautonomia. I think it could be very helpful to add some information about autonomic neuropathy to our website. It's not something I can do anytime in the near future, but I will make a note about this. If anyone here is a good researcher and writer and would be interested in writing a page for DINET, let me know!

Thanks for stopping in again, BellaMia. It's good to hear from you. I'm sorry that things went downhill after your muscle biopsy. Do you think it was from the physical stress on your body of going through surgery? I'm glad you were able to get a diagnosis, but sorry it has to be such a hard one.

Please let me know how the mito cocktail works for you. I'm interested to know if you experience some relief of symptoms.

I'm on a small mito cocktail right now. I haven't received an official mito diagnosis, but my docs think I have it, and are treating me for it. I'm still debating going through with the muscle biopsy. I'd like to know for sure if I have mito, but I wonder if the stress of surgery is worth it. If a precise mito diagnosis would help with creating a better mito cocktail for me, though, I think I'd really like to do it. Anything that will improve a bit of my quality of life. I'd really like to be able to play with my children more and spend more time with my family.

You're in my thoughts.

Blessings,

Rachel

That's really neat! I hope you are able to get a good group together. Once you get a support group up and running, let me know if you would like to have it added to our support groups page here: http://www.dinet.org/supportgroups.htm.

Thanks for sharing! I like your jelly bean background.

My blog is: www.cranberryteatime.com

Happy Thanksgiving!

The Meet Others program is a bit confusing at the moment. We're working on making it better and more user friendly.

Here is how it works currently: When you join the Meet Others program your information is sent to those who are already on the list. If someone nearby (who was already on the list) wants to contact you, then they have to make the first move. When new people join the Meet Others program in your area, you will receive their contact information via email. The "old" members receive the information of the "new" member, and it is up to the old members to make contact.

In the past we used to send out an updated list to both new and old members every time someone in the area joined. That led to unwanted contacts, so in order to protect our members we had to change the system a little.

I really hope to be able to revamp this program next year so that it is both user friendly and protects our members.

Rachel

I'm so sorry, Jana! That's rough. Is there anything else that might help with your pain but not give you seizures?

Hello Jnew, and welcome! It wasn't clear from your post - have you taken magnesium and had it lower your blood pressure? I haven't had that symptom from magnesium. It doesn't lower everyone's bp, so you might find that it works okay for you.

My muscle twitches are continuing to lessen, and I'm so glad. It is so weird to be lying in bed, trying to go to sleep, and having my arms and feet move when I'm not telling them to!

As the involuntary muscle movements got worse my muscles also became weaker. I had to spend a lot of extra time in bed because my muscles had become so weak.

I think I might have discovered the problem with my muscles. There were actually two small med changes that I didn't think about. I had forgotten that I stopped Cerefolin NAC about a month ago. I had been doing better with brain fog on the mito cocktail, so I was hoping that I wouldn't need the Cerefolin NAC anymore. I did have more cognitive difficulties after stopping the Cerefolin NAC, but I pushed through it. I thought that the med only helped with brain fog for me, but now I'm wondering if the folate and amino acids in there also helped my muscles. Perhaps it was helping to treat mito and I didn't even know it.

The other possibility is the alpha-lipoic acid that I was taking. I have been taking it for a while now, but 3 weeks ago I started a new bottle. It is the same brand as before, but it is the timed release type. I didn't even realize this until a few days ago.

I have now stopped the alpha-lipoic acid and I have added Cerefolin NAC back into my daily meds. The muscle weakness is improving and getting back to what is normal for me. I am still having involuntary muscle movements, but they are lessening. I'm not sure if it was the timed release supplement, the lack of Cerefolin NAC, or both that caused the problem. But I'm feeling a little better, and I'm thankful for that. Once I'm back to normal I'll try the timed release alpha-lipoic acid again to see if that is what was causing the muscle twitches and weakness. I'd like to know for sure what the cause was.

S-Pot, I take magnesium to help prevent migraines. It has also decreased my muscle aches and pains. You might benefit from a magnesium supplement also.

Serbo, by the head of the bed we mean the portion where you shoulders, pillow, and head are. Having your head and shoulders elevated during the night has helped some patients because it can cause the body to increase its blood volume. Some patients have found this helpful, but I have also heard from many on the forum that it was not helpful. I don't want to discourage you from trying it. It could really help you, but don't get your hopes up too high because it doesn't always work.

The poll feature worked for me. It might just have been a temporary glitch. You are welcome to edit your topic and add a poll in or start a new topic with a poll. If you need any help, send me a PM with the poll questions and answers and I'll get one posted for you.

Rachel

Thanks, everyone, for sharing your thoughts.

Sallysblooms, yes I take a good magnesium supplement daily. I can't take baths because of severe blood pooling in my legs if they are submerged in warm water. And I can't take a bath in cool water because I wouldn't be able to stay warm.

I have gone back to my usual night time meds of amitriptyline and melatonin. The doxylamine succinate is great for a couple of nights, but after that it leaves me too groggy in the morning. A couple of nights ago I was having problems with involuntary muscle movements while I was still awake. It's annoying, but not nearly so bad as the muscle movements that wake me up from sleep.

I have an appointment with my doctor in two weeks, so I'll be asking her if there is anything she recommends.

Thanks so much for working on this, Rockies Girl! Your help is very much appreciated.

Brye, in answer to your question, please check with your doctor before passing on his contact and clinic information. Sometimes doctors have been added to our list without us realizing that they didn't want a patient to pass on their information. We do want to be considerate of doctors and their wishes. Some doctors have treated a few dysautonomia patients, but if it isn't their specialty or a particular interest of theirs, then they don't appreciate DINET referring patients to them via the Physician's List.

I have been having greater difficulty with sleep in the past couple of weeks. I have a lot of sleep starts in the beginning of the night. Usually there will be one big one at first, and then lots of little ones after that. Sometimes the little ones are so little that I'm not even sure if they are sleep starts or not. For example, I will wake up because one of my fingers is moving, and the movement against my skin wakes me up. Since it happens right after I fall asleep, I'm not sure if it is totally involuntary or not. When it is worse it is more than just one finger that moves; it is my whole hand, and sometimes even my arm. Maybe this would fall under the category of Periodic Limb Movement Disorder.

When a finger moves and wakes me up, I make a fist to try to keep my fingers still when I fall asleep again. If the movements aren't too bad, then this will work. Sometimes I have to put my fists underneath the weight of my body to keep them from moving in my sleep. When the movements are at their worst, even lying on my arms and fists doesn't work. They move anyway after I fall asleep, and it wakes me up.

I haven't had any changes in diet or medicines, so I don't know why my sleep has changed and why my body is moving so much in my sleep. This is a problem I have had for a few years, but it has never occurred nightly for 2 weeks.

A few nights ago I was really in need of a good nights sleep, so I changed up my night time meds a bit. Instead of taking 30mg of amitriptyline and 3mg of Melatonin, I took 1/2 of a doxylamine succinate (Unisom) instead. My hope was that it would relax my body enough so that I could sleep, and it did seem to help I have continued with this for 3 nights now, and I have been sleeping better. I don't prefer this for the long term, though. I would like to go back on the amitriptyline for migraine prevention, but it is best to not mix it with the doxylamine succinate.

Does anyone else have a problem with sleep starts and other involuntary muscle movements in your sleep, and is there anything that has helped you with this?