Noreen

http://www.medhelp.org/user_trackers/gallery/dysautonomia Hi- This is a daily on-line tracker for meds, symptoms, environment, blood pressure, etc. designed to be printed in graph form so you can take it to your doc. Url is above as I am having a horrid time with fine motor issues. I was amazed at the pre-loaded symptoms. E. g. for Urination you can check normal, frequent, or infrequent on any given day. I could not copy the symptom table text but it is extensive. It has pre-loaded meds - haven't seen one on here that isn't there. The site has a Q and A answered by Cleveland Clinic docs so I believe it to be legit but don't have experience as of yet. I share in case anyone is just starting a med journal like me and could find it useful. Noreen

mkoven advice is excellent. A short version of the Alexander Technique might help also - when walking (even if all you can do right now if walk to the bathroom) visual a string running up your spine pulling up at the top of your head - if you keep this balance and control up while walking it helps strengthen everything. What helped me after an extended period of deconditioning is a recumbent bike - I started with just 2 minutes, worked up to 3 minuted tid and now do 5 minutes tid.

I am truly petrified of the coming summer in NY with heat and humidity. My symptoms can get much worse just walking out to the car and, oh no, the heat of a hot car while waiting for the a/c to kick on - I won't have a brain cell left to drive never mind talk to whatever medical professional I was off to see.

Oh okay - I didn't understand that. Assuming all else is well, an occaisonal spike in bp is not the worst thing. I'm older than you and have stroke risks they are concerned about but they don't get overly concerned when my bp hits high like 150/90 due to drugs and pain. If midodrine is the drug you want most in your system, go for that first. Remember, though, you may have to hydrate more than you did as your body adjusts to everything. Can't answer you on the other as I am not familiar with it. Good luck with everything.

Dani- It hasn't been overly long since you gave birth; your body is still adjusting as the body has more blood and fat during pregnancy and after to sustain the fetus and nourish the infant. t'd be great if the improvement in symptoms stays and you treat from that level. Either way I don't think you should re-start the meds without calling your doc. Perhaps in light of decreased symptoms he/she would would only want you on one or the other or adjust dosages. We can't know. Give her/him a call. Hope you had a wonderful Easter with the baby. Take care, Noreen

Thanks Yogini. I was about to start a journal as soon as my bp device gets here so I will add a 'P" section along with a temp section the rheumy wants. I don't know if it'll yield any info - my problem with urinary freq is wearing a 'just in case' pad when going out. So often these pads aggravate my vulvodynia. If I could detect any sort of pattern, it would help.

Extremly interesting that you mention that Julie as I have wondered about him sometimes. He flushes and gets hives frequently - on zyrtec 10 mg but I don't see any correlation with med and occurrence.

Thanks, I think it is a valuable resource. I need info on Blood Volume production but like you need to do it on a day when I am up for studying.

Yeah but Rama - it is hard to do research when you "feel like you are being chased by a bear." A quick question among friends shouldn't hurt. Your concise explanation of adrenaline release is great and much appreciated. I absolutely love your gravity graphic. I started singing the song in my head which you so appropriately include in your signature line and became symptomatic. Boy that will come in handy at the doctor's. Are you treating the AS with meds at this point or just with exercise? I'm curious about any inflammatory disease process and linkage with dysautonomia. Tks, Noreen

The tricky part, though, is we always have dyautonomia - i drink 90 oz. a day as part of my control - yet it is still mysterious why sometimes I'll have to go 4 times an hour and get up 3 times a night and others 3 times a day and sleep thru (pain allowing) the night. There is no way a MD is going to get this and I don't think I even want another drug aboard to have to sort out side effects. Perhaps I am being obtuse and need the long explanation. Thanks in advance, Noreen

[iI don't know why the little white quote box did not appear - sorry] In the end I was approved after almost 3 years. I was fortunate that I had a medical expert that was actually impartial, and he was great! He researched the EDS, and the favorable decision was based on that. The information on the POTS was too vague to base my disability on that. The psyc evaluation tried to say I had somatization disorder despite evidence in my medical of psysiological cause to my symptoms. My attorney said it this diagnosis would be helpful to my case also, but both of us didn't feel right, as this was a flase diagnosis. http://en.wikipedia.org/wiki/Somatization Maxine- Did you get a copy of the info from the medical expert who researched EDS? I am in the process and that would be of so helpful to me. When you contacted your government officials, was it helpful - did they do something on your behalf? Thank you for any information you can give me, Noreen

Thanks Summer- Actually I have no chocolate (I think that goes against my religion esp. today) as I am trying to be very good about the low carb diet the doc prescribed as a stroke preventative. But I could make a great argument for one square a day in my med case - studies have shown dark chocolate has anti-inflammatory and pain relieving properties. Just think, I'd feel less deprived if I had a square to look forward to thereby reducing anxiety and depression symptoms. The trick is, as Erik says, eating just one.

That is wonderful, firewatcher. She better live up to your high standards. Take care, Noreen

Thanks I downloaded the PDF to try to get through if this migraine ever lets up. I've had worse -at least I can use the computer for quiet things. Sustained reading is beyond me. However, this headline in the same issue of that journal caught my eye. Easter eggs and other chocolate may be good for you ? at least in small quantities and preferably if it?s dark chocolate ? according to research that shows just one small square of chocolate a day can lower your blood pressure and reduce your risk of heart disease. The study is published online on Wednesday 31 March in the European Heart Journal [1].

Welcome Blhorn- This is one terrific group and I am happy you found it. I am looking forward to your posts and hope you can educate me on how to deal with heat and sun intolerance. Or, perhaps, we will all learn together. Hope you have a joy filled weekend, Noreen

Rene- I hope you begin to feel better soon. It won't be fun going and getting poked to get your INR tested but hopefully when your dose is stabilized you will feel better. A cheap trick for cold is to fill tube socks with rice and microwave for 2 or 3 minutes. I've been known to be surrounded by half a dozen socks - they mold to your body's contours. Still praying for you, Noreen

OMG! A true kindred soul. And you liked each other before either of you became ill so the illness is not the only basis for a true friendship. I don't know - I might feel like I won the lottery.

LIsa- I am so glad you got the name of a doctor. I can't help you with knowing whether you can get a copy, though. Did you go through a lawyer? I may have used the term suicidal ideation incorrectly - I think that some may say have a "plan". What I meant is thinking about fleetingly is like what you said in thinking about your heart just stopping and that would be that. The doctor can help you. The guilt thing is a mommy and woman thing. I have come to the realization that I can only be up for 20 minutes every hour. My exercise has to come in there on 2 of the hours in order to increase my stamina. Therapy will help you to understand that you need to come first in order to take care of your family. On airplanes it's Oxygen first to the mother. Just relax and remember to breathe. Enjoy the day and try to stay on an even keel.

Boy do I understand that. If I have to be so sick, could I please have something that fits on a 3 x 5 card so I could just hand it out? Really it would make my life so much easier. We need a brief description to hand out. Then we could wear a card around our neck with one side green for asymptomatic and the other red for symptomatic. They'd just have to believe us not to talk to us when the red card was showing. I think the thing that has saved my sanity is this forum as I wait and wait to find the right doctors - since that last 7 month wait to get into the teaching hospital didn't work out. The experiences of the members of the forum helped me tie together my dxs and realize that most issues are related to the underlying hereditary connective tissue disease dx- it just all makes more sense. I know what you mean when you say they want to blame things on deep seated issues. It drives me nuts when therapists want to dwell on 'my major depressive episode' 20 yrs ago when my son was killed. It was painful, I dealt with it, I still miss him, move on people. I hhave chronic pain and an Aspy teenager and husband who was never dx until 4 yrs ago - I have more than enough to deal with in the present. My present therapist who I haven't seen in a while due to financial constraints uses humor a lot her dx - "Boy you must have been really bad in a previous life." LOL

{{{Bella}}} that is so much hard work to throw back at you. A couple of suggestions to maybe throw at your kids to help you check out? Boy Scouts looking for Eagle Scout status would do it if you could find one. Make a call to the local chapter of the Boy Scouts of America and see if you can get an official to send an e-mail seeking one or a troop to adopt the project. The issue, of course, is it will take time to plan these things out. Another possibility is contacting schools that require community service. I think this would be an even longer lead time and be into the next school year. Could you call MIT and beg someone for the proper math calculations? Could we then try a trade school or apprentice program to build based on those calculations? It would be great PR for MIT and the program. Just brainstorming here but I sure hope a solution comes your way soon. You waited so long for that beautiful chair and now a ramp prevents you from using it.

You knew I was kidding, right? I thought it may have may a case of nerves and that is why I went for my brand of comic relief - sorry if it didn't translate as such. Know what you mean about the hairdresser - it's pretty hard for her to put dye on a head that is moving about due to the torticullis. I've been dismiised from her service - my roots are 4 inches long. Is there a therapist for that? sorry, there goes my humor again. You have many valid reasons to seek out a therapists. There are people with all the support systems in the world who need a therapist just to deal with an ADD kid. Essentially you are entering a new relationship. Everybody gets nervous going into new relationships. Noreen

That is a great website. Thanks for posting

Bella - Any new info on your wheelchair ramp? Noreen

Rene Been praying for you Rene. Wonderful news that you've been released from the hospital I hope your recovery is uneventful - no one step forward, two steps back type thing, okay? Post when you are able and update us. ((hugs)) Noreen

Lieze- I can't remember which forum member said this but I have adopted it as my mantra - 'I am a bland potato.' There are so many steps in going out to the car - where is my purse, are my keys in the purse, do I need X, do I have list, yada yada. A lot of this internal talk happens while we are standing (stressing the autonomic nervous system) while the kids are making noise (noise is another stressor). It's possible you were better when you went out with your husband because he was driving and that took away numerous little things other people don't think about. If I were you, I would look at what happens first like Tammy says. If it's the dysautonomia, adopt the mantra as it helps put everything outside you and you're able to check which stressors are getting to you. It could be the light coming in the window is causing you to squint because the sun has changed position - that is just an example that everything is so variable. Relax, remember to breathe, and take care of you whether the problem is anxiety/panic or dysautonomia induced panic. Enjoy the weekend with the little ones. I used to dip two fingers in corn starch and make bunny tracks to the baskets and then say 'Look the Easter Bunny forgot to wipe his feet!' nOREEN