dsdmom

Can't believe I forgot to mention magnesium - this seems to help me immensely. Studies show 400-600mg / day should help. If I run out I DEFINITELY get worse. Worth a try.

I've had one for the last 2 years. I find soft tissue work around my neck and shoulders and jaw and head from a chiropractor can help. I found out I have TMJ but that's not the only thing causing these headaches. Maybe some of my drugs too? I've been through the ringer trying to get a hold on them and I feel like I finally am getting there...but I sympathize with what you are feeling. Every day all day is not fun!

glad you made it through!

Julie - WOW! I am SO impressed you did the boot camp. I am afraid I could not do it because of cfs/fm and unfortunatey pushing myself ends up being very counterproductive. But I wanted to tell you that I am so proud of you!!!!

BellaMia - Just wanted to add to please keep us updated about a support group in the Boston area - would love to hear more about it!

Welcome! It sounds like you would benefit from seeing a dysautonomia specialist. Do a search on her for "Atlanta" - I feel like I saw somEthing recently about docs in that area. Please remember that even if what you have is *just* syncope, you deserve to be feeling better with treatment. You don't need to jus suffer and hope this ither doctor's suggestions work. Therapy is very individualized for these types of things and you need to find what works for you best!

Could you continue to get it compounded?

I recently went gluten and dairy free for stomach issues. I have found now if I do it gluten my dys symptoms are worse. And let me tell you that I was carb queen! Never ever thought I could do it and in fact I'm not just gluten free but all grain free. So no rice, millet, quinoa etc. So gluten free options at the store are not options for me. At first I was terrified about what I was going to eat but its easy now. And I have not lost weight, which for me is a good thing. I eat a ton of nuts and have upped my fat intake to make me feel full. My husband did the diet with me though and he lost weight.

I guess I'm confused - are you saying florinef is actually estrogen? Because I'm pretty sure that's not the case. Its possible that it can mess with your cycle since I'm on prednisone and it being a steroid can change a woman's cycle. Just one of the many side effects. I just don't want to confuse people about florinef. Do you have any links to information about why you believe it to be estrogen?

I recently read projections that said 90000 may die in the US from the swine flu. As opposed to 30000 from the regular flu. So it is thought to be serious. Personally I am up in the air as to what to do. I have gotten the regular flu shot and do have reactions to it - last year I felt very symptomatic for a few days but figure it was worth it not to have the flu. But I am very nervous about the new vaccine because of the issues in the 70s and don't know if I want to have my preschooler vaccinated as well. I am so nervous about her getting sick because preschools are germ manufacturers so then I think I'm nuts not to give it to her. Then I think what if what happened to me and my dys is because of some genetic oredisposition and what if I pased that on to her and the vaccine triggers it for her? I am going to talk to my doctor and her pediatrician but honestly don't know if they will be much help. I'm expecting both of them to say its no big deal and not to worry. And maybe they'll be right but I just don't know what to do!

Check the label of your prescription - it should say somewhere what the manufacturer is and give a description of the pill (color, what is imprinted on it, etc). Or at least that's what it says on mine!

I haven't had them switch my drugs to include different brands in the same month's supply, but my pharmacy's supplier apparently switched generics of one drug I took and I didn't realize it until I picked it up and got home. I am super sensitive to drug changes so my doc now writes the generic brand name on my prescription and the pharmacy special orders it for me. Better to be safe than sorry - if your doc writes it on the prescription they may be more inclined to stock the one you need.

Ivig is not standard care but has been used empiracally. There are studies of usuing it for acute pandysautonomia. The problem is that insurance would have to approve it since it is not the norm. If your doc thinks it would help you might as well see if your insurance would cover it. I think I may try this option soon with my neuro. We'll see what happens.

Anxiety is not postural - meaning it does not cause your hr to change on position. Does her heart rate return to normal on sitting? If so, that's not anxiety. I understand she has anxiety and should talk to someone about trying to deal with it but her symptoms sound very physical. I just would hate her symptoms to be brushed off because of her anxiety.

Yes please let us know - saw my neuro today and he wants me to enroll in the study as well. Need to go back to get the 'official' testing to see if I qualify. I hope I do because he says he's seen great results.

My neuro is taking part in this trial as well - last I spoke w/ him things were going really well and people were feeling better on it. I see him again this week and look forward to finding out how far along things are.

I think the additional thing was GIVE A PINT OF BLOOD since many of us are hypovolemic.

I see Novak as well - interesting about his theory on tylenol... Let me know how it goes. I see him next week for a follow up.

Out of curiosity - who is your neuro? My neuro once suggested tylenol as a way to possibly help with heat intolerance issues. Tylenol works on the hypothalamus - which is certainly involved in the ans - so maybe there is some merit to this.

I just want to give you some support - it sounds very scary what you have been going though. I've only had one near death experience and that was more than enough for me. Can't the two doctors who want you to go to vandy start the process or at least steer you in the right direction as far as who to see? It seems to me that they should be the ones setting this up for you. Hang in there.

I'm sorry - that sounds terrible. Could you ask your doc to prescribe some zofran for the prep? I had to take zofran for my prep to keep everything down.

Yes, it was the hangover!!! The first 5-10 minutes were HORRIBLE for me - mainly the previews and the first part of the movie. The noise set off my ans big time. I just felt awful - my heart wasn't racing b/c I checked but it felt like it was. And I just didn't feel good.... I made it through the movie but I've been feeling crappy ever since (doubt it's from the movie) but I doubt I'll be going to another anytime soon.

I'm planning on going to the movies for the first time in probably 6 years tomorrow...I'll let you kknow how it goes. Definitely bringing ear plugs. I'm nervous but really want to see this movie!

I believe you that it was the Ritalin. I had a MAJOR relapse/flare after 1 dose of celexa. I can't explain why it happened to you but hang in there - hopefully you'll get some answers soon.

I literally can't take a sip of alcohol without feeling terrible. Was definitely NOT like this before.