potsgirl

Meditation has worked for me. My problem is doing it consistently. It works the best for me when I do it daily for about 10-15 minutes at a time. There are some types of yoga that are also supposed to be very relaxing, and I'm going to try that soon.

Good luck!

Midodrine did nothing for my low BP, and I had some nasty headaches and stomach issues with it. I know that it works really well for some of us, though.

Rissy2D,

I think I've read that the ALCAT test is not a very reliable means to determine food allergies. I'm glad it worked for you and your husband, but before spending that much money, I think it would be wise to investigate the test thoroughly before doing it. I think I saw the information under "Quackwatch." Just a point for others to consider before spending the money.

I am one of those who can't function much past 5 pm. I go in to bed about 5:30 - 6 in the evening, read until 7:30 or so, and then it's light's out. I get up around 5-5:30 am, but am not able to leave the house until 9:30 or so (on a Good Day, when I can leave the house!). I usually take a nap between 1:30 - 2:30 or so. I guess I have a very small window of when I am at my "best" - from about 9:30 until 1 pm.

I would love to go back to work, and to have some night life as well, but that's the rhythm my body is in right now. Makes it very difficult to socialize! Lunch anyone?

I try to keep myself as occupied as possible, even though that can be difficult when I'm pretty much homebound. Doing some sort of volunteer work helps keep your mind on the outside world while helping others. That's one of the reasons I'm a moderator on this site. Seeing a counselor is also very beneficial to me. Are you taking an anti-depressant? That's also helped me...I also like the ideas that Maggie wrote about, singing and playing music, dancing if you can.

I also read a lot, and watch some television. I record my favorite shows so I can fast-forward through them and not get stuck just watching any old thing on t.v. I live in Arizona, so it's awfully hot to be outside during half the year or so, but when I can, I sit outside and enjoy the view.

And don't forget the Forum! Take care, and reach out when you need to. Don't be afraid to ask for help. Hope you're feeling better soon.

Rama,

Good luck with your new diet. Please let us know how it works for you.

Maggie, I think the diet you're on sounds pretty good, too. How much salt do you think you take in during a typical day?

Cheers~ Jana

Jangle,

Maybe you'll start a new trend!

I'm sorry that you are having troubles with daily living at home. I wish I knew more about home care, but I think that Medicare has some provisions for it...are you on Medicare? We have a cleaning service come in once a month to help with that, and are considering upping it to every other week. It's just the two of us here, so our place only really needs cleaning every other week. The small things that need to be done every week aren't too difficult, thankfully. Kudos to you for getting through your days with three kids! I don't know how you moms out there do it.

I can also relate 100% to the grieving process. It's gotten better with time, because when I finally realized that I probably would never be able to return to my old job, which defined so much of who I am, I was angry and depressed for over a year. That was the hardest thing for me, along with how dysautonomia basically cut off most of my social life and activities I used to enjoy. It's still hard, but it's gotten better. Especially when I try to focus on the positive things that are still in my life, and am hopeful that things will one day get better again. I have to be grateful, because I know things could be so much worse. Watching my fiance struggle with cancer two years ago helped me put things in a better perspective.

Thank you all for being here.

If you can't get into the Ronald McDonald House, which is an excellent idea, there are hotels that connect underground right to the main Mayo Clinic building. It's darn frigid in MN this time of year, and for us it was worth the money to stay in one of hotels that have a tunnel connecting it to the clinic. They have quite an underground system of tunnels where you can find food, pharmacy items, and shopping. You can just roll out of bed, get ready, and be there in minutes. We bought groceries and cut way down on our eating out expenses by utilizing the fridge and microwave in the room. The longer you stay, the cheaper the rate...Now if I could just remember the name of the hotel! If you're interested, PM me and I'll find it..We were there for about 10 days.

Yay that you're going soon!

Hi Peregrine,

I think it could be related to dysautonomia, or your medication. I've also had some similar things happen to me when I've been trying to carry something like coffee/tea/anything that I am not fully grasping with my whole hand. If it keeps up, you might want to ask your doctor about it...

The other day I took my BP/HR after 35 minutes on my treadmill. I was working fairly hard (for me), cooled down for a minute or two, and then took my readings. I had bascially no change! My BP was about what it is when I'm sitting (90/65) and my HR was 71. Anyone else have these kind of results after exercise?? Normally when I stand, my BP goes to about 65-75/55 or so, and my HR goes up from about 65 to 120. Of course, I'd been upright for at least 45 minutes by that time...

I'm really interested in what others get for their readings. I got a Timex HR watch for Christmas, and as soon as I get through the directions, I hope it gives me more answers. No wonder I feel so awful when I get done exercising!

Thanks and cheers,

Jana

Has the date been finalized yet??

I also call them 'jelly legs' and it feels like I'm trying to walk through water sometimes. Has anyone else ever just collapsed and fallen to the floor?

Does young in spirit count? Just joking...

Trach,

My symptoms are very similar to yours, but my headache has been going on for about 6 months now. It's gotten progressively worse, to a point that I was in the ER before Thanksgiving and again last week. They gave me Ativan and Dilaudid. At home, the Dilaudid just didn't give me nearly the relief it did when given intravenously. My neuro dysautonomia specialist at Mayo is sending me to a headache specialist to see if those occipital nerve blocks will help me. I'm going on Wednesday. If I get the block, what should I expect the rest of that day?

Thanks so much! Hope all the headache sufferers out there get more relief in 2012. ; )

Just to be safe, I would consider having your doctor check you for small fiber neuropathy. Those are the same symptoms I had when I was diagnosed with it. Good luck!

Me, either. I like to write, but can't do design at all. Perhaps I'll take an online course when I'm up to it.

Hi Brye,

Yes, I have a pacemaker. I received one due to my bradycardia and dilated cardiomyopathy about 5 years ago. I do think that's it's helped because it doesn't allow my HR to go under 60 bpm. I still faint and have seizures, however. Caroline, I'm glad you no longer faint. Brye, I would say to go for it, but get any MRI's you might need out of the way because you can't get one after you get your pacer. The surgery wasn't bad, but you obviously need to plan on recovery time. I think there's a couple more of us here that also have pacers...hope you get more opinions, and keep us up to date on what you decide!

Yes, this often happens to me, too. I usually start tossing and turning around mid to late morning hours (3 - 4am) and get up about 5 - 5:30 am. Ugh. Then I'm so tired I either have to try to take a nap after lunch, and/or go to bed around 6pm, where I read for an hour or more. I'm usually asleep by 7 - 8. I take Trazodone to help me sleep at night, and Clonazepam (Klonopin) can also help. When it's bad, I keep a Benadryl on my nightstand with some water, which can help me fall back asleep if I'm lucky.

Reading also makes me sleepy, as does a warm bath an hour or two before bed. I've been told no tv or computers within an hour or two before sleep, and no exercise 2-3 hours before bedtime. Meditation is also beneficial. Wow - I'm starting to feel drowsy already!

Another thing it might be is small fiber neuropathy. You may want to look up both Raynauds and small fiber neuro on the Internet to learn more about each syndrome. I have small fiber neuropathy, and some of your symptoms sound like mine, too. Good luck, and sorry you're having this problem.

I've been wanting to try acupuncture myself. Massage can sometimes help me, but I can't afford it very often. I do try to meditate, too.

I have one cup of coffee in the morning, and then I switch to green tea, which is decaf. I really enjoy some of the flavors of coffee from Trader Joe's, and right now they have a holiday green tea out that I find yummy! The coffee does help me function first thing in the morning.

Jana

Maggie,

You are such a sweetheart to offer to help with my travel needs. I think it would be a lot of fun to stay in the same hotel together. This sounds great!

Rachel, is there a possibility of having this around the weekend of Feb 24th? David gets off the preceding Thursday and Friday and therefore could travel with me. We could make it a mini-vacation, see some sites, and visit more with members in the area or who would also stay longer.

I like your idea of sending this to e-mail. Ready to plan!

I've been on Paxil (15mg) and Klonopin (.75) for about 10 years now, but I had to do some trial-and-error before I found the right meds for me. They keep me steady and while I'd like to not have to take them, they help me to much to quit...Xanax is good for short-term anxiety, and you take it as needed, but Klonopin is better with a longer term issue, and you take it every day whether you need it or not.

Hope you find something that works well for you. Also, I have a good psychiatrist I work with on the meds, and I've done some counseling to help with some anxiety/depression episodes.

Cheers,

Jana