lloppyllama

Hi there,

I've been in a relationship for 2 1/2 years, living together for 1 1/2 years. When I first started dating my boyfriend my symptoms had been temporarily pretty well controlled on my meds. But about a year ago they got real bad again. He doesn't find interest in medicine and is grossed out easily by things. Its been really hard on him seeing me get sick, and he doesn't know how to deal with it all. He is definitely there for me, and loves me, but he doesn't like to talk about it all and i can see he is dissapointed when i cant do stuff. I can tell he is struggling with it all. Any advice on coping with this kind of thing? For both patient and significant other? Thank s! - Mary

So this is a rather late reply but I thought I would share if you still haven't found an answer. I tried topomax and it made me lose all cognitive function. They call it "dopomax" as a joke because it makes you dopey.

I have not tried amitriptyline but I am on Nortriptyline which helps a lot with my migraines. I used to be on 50 mg at night, now I moved up to 75 mg at night because my migraines were getting worse again (after about four years at 50mg). Its got sedative effects, so I just use it to help me fall asleep then too.

Hope you find something helpful, I know how tough migraines can be!

I do two sprays in each nostril everyday. The pediatric dose is one spray, then adult is two sprays...generally. And I have not found any side effects from this med, so I would guess no you wouldn't have side effects from upping your dosage, but everyone is different.

Mine will pool if I am standing, sitting, or laying in the sun. And it stays until I put my legs in the air or put on my compression stockings.

Are you going to a private or public university? Depending on which they have different laws that they must abide to. If you go to a public place, they are required to help you to be best suited with your disability, but if it is a public university they don't necessarily have to, but in most cases will since you are paying them to go there.

Anyways, in my personal experience (I am going to a private university) they accommodate me by giving me the "handicap dorm", where it is wheelchair accessible and has a shower where I can use my shower chair. I also can't have bunk beds since I pass out all the time, so they lowered the amount of roommates so that I can have a bed on the ground.

I have a lot of GI issues, so they are giving me a special meal plan to accommodate that.

They are also giving me special circumstances for labs, classes, and tests.

All of these things were done through my school's disability services. I had to give them a letter from my Doctor saying my illness and how its affects me, so it might be a good idea to have one of those ready. I would set up a meeting with the school's disability services before you start there, if you have time.

Best of luck to you! Feel free to message me with any questions!

-Mary

I have severe blood pooling in my legs, and when I try to lay in the sun it pools even more. Mine can look like red and white splotches on my skin, but I don't know if that is what yours was or not. Sounds like Reen has some ideas on a rash it could be. Unless it seems to itch and really bother you, I would just ignore it!

I hear you about the Catholicism orthostatic training!!! Haha, I too go to a Catholic church...I have come to terms with the fact that I will just have to sit down and not stand. It's bad especially since I am in the choir, but it all works out OK. Some people are rude and make snide remarks about it, but I just don't let that bother me, I am doing what I need to.

I hope you are able to get more answers at your appointment so that you can start more effective treatment!

Hopefully 2010 brings you answers and good health!!!

-Mary

I personally am not a fan of the thigh high stockings...they are just quite bothersome! However I wear knee high stockings everyday!!! And they make a HUGE difference for me. But I have really extreme blood pooling, so depending on whether or not you actually have a lot of blood pooling it might not be worth it for you.

From what you say so far, I would say that it doesn't benefit you to wear the stockings. If however you feel like you have a lot of blood pooling that needs to be under control, maybe you should try using just the knee high stockings.

Good luck!

-Mary

Yes, this is a type of Vertigo. I too get it, and the only thing to make it better I would say is trying to get your HR and BP more normal with meds, salt, and liquids! Good luck, I know how annoying it can be!!!

I dont have any advice, but I just wanted to say congrats!!!!! I hope that you get rid of the annoying breathing problems soon so you can enjoy your new baby! So exciting

I am glad to hear that things worked out for you so smoothly! I hope that with this chair you will be able to live more "normally", it has been a great help for me!

-Mary

I get hives on my bruises, and bruises on my hives, more commonly the first thing though. It is quite odd, but my doctors dont know why...they are testing me for hormone secreting tumors that could be causing it. I will let you know if they find anything, as that could maybe be causing it for you too...?

Good luck!

My visit went well. My doctor is having me do another TTT to see if things have changed at all. Then they are running tests to check my thyroid and checking for tumors on my adrenal gland, or in other areas that could cause my symptoms. I''ll let you know what the results are. I am also meeting with my neurologist and a cardiologist to see if they have anything to find in my heart or brain.

Thanks again everyone!

-Mary

I do not know of one specifically for Dysautonomia...however on Butyoudontlooksick.com they have some time of chat room that you could check out. There will be some people who have dysaut. and others who just have other chronic illnesses.

Well I put as much salt as I can on my food, but its not 10 grams, that is like 10 tablespoons a day! I put so much on there that my mouth constantly has sores in it from so much salt...I wish that there was an easy fix for this!

Thanks for you suggestions!

-Mary

oh good thanks! I figured i didnt have it since i was so young and its usually 50 year olds...thanks for writing back about it

-Mary

Oh man, I hope it isnt SDS...

I am going to the doctor tomorrow in the morning, so hopefully we can find something. Has anyone ever been checked for adrenal gland issues? I am also wondering if it could be that.

Thanks for all the help!

-Mary

Its weird becuase when I flex my leg muscles it instantly makes me faint...its so strange since thats what is supposed to help...but I do it when I am sitting down.

I take 10 mg midodrine 3 times a day. I will have to try the bed thing, I tried that once and I really didnt like it because it felt so strange! How do you get that much salt....I tried salt pills once, but my stomach couldnt handle them...I think I might try them again though...I'll wait till the weekend so I dont get stomach upset at school.

Thanks for the help!

-Mary

Hello everyone,

I hope that you are all doing better than I am. My health has been deteriorating these past two years quite a lot. I now am no longer able to stand up for more than a few seconds with out fainting. All of my symptoms have become very severe, and I can no longer function normally. I am on all the meds, and I do high salts and fluids, along with exercise...my doctors just dont know what to do anymore! I go to mayo, so its not like I dont have a great team working for me. I would apprechiate any ideas that people have of why I am getting sicker, and what I could do to make it get better. I am also wondering if since I have never started to improve from when I started treatment, if maybe I will be one of the teenagers who doesnt grow out of it. I really hope that I will, but I just am starting to lose hope that I will get better...maybe I am in the 20 percent who dont get better...

Thanks for any help, or really just any encouragement as well, my spirits are starting to fade, Thanks!

-Mary

7am when I am supposed to wake up, but if I dont actually get out of bed, I still take it at 7. Then four hours later, and four hours later again.

Do some of you take it more than three times a day if you are up for more than 12 hours?

A TTT which means Tilt Table Test, also sweat tests, and nerve conduction studies along with a electromyography. Those are what I had.

I believe your symptoms are pots related. I have injuries that are worse because of pots...casing great pain. I think that since you hurt your neck, now since you have pots, it doesn't heal right and it flares up worse than it would if you were "normal". I get that filled with pressure feeling too when I lay down with a migraine...its annoying and hurts!!!

I also definitely have the temperature issues. This morning I was really hot, then really cold, then really hot again, all withing 15 minutes, and I was in the same room doing the same activity the entire time. Since our ANS is off kilter, our bodies cant control our temperature regulation, so it goes all over the place randomly...such fun

Good luck! Sorry to tell you there's not much we can to to get rid of these symptoms other than try to get our blood volume high with salt and fluids and then try doing aerobic exercises...and meds to regulate your blood flow.

-Mary

I am like tearose, I dont get anxious about my physical symptoms, but when I cant think due to brain fog I get very anxious and feel like I am being wasteful and that I am a failure. I have a good doctor who reassures me that it is ok to have anxiety, I have a lot to deal with, and set high standards for myself, so it is normal that I would feel anxious about things. Right now I am looking into finding a good counselor/psychiatrist to work with.

I do not think that you need to apologize for your anxiety, it is natural to feel that with all you are dealing with, and you shouldn't feel like you are wrong for getting anxious about things.

I hope your appointment goes well! And try not to worry about what your doctor thinks of you, you shouldn't let other people's judgment worry you, as it isn't their place to judge you anyhow.

-Mary

I have terrible brain fog as well. It has been really bad this last month and has made school nearly impossible. This whole not being able to think issue stresses me out so much more than just feeling ill. Today I am home sick because I keep passing out But I also have major brain fog issues, right now I am looking into taking Cerefolin NAC, which is supposed to help with memory issues. My vision has been really poor lately too, the optometrist I saw said that it was because there just wasnt enough blood flow to my eyes. I dont really know what to do about that though, my doctor doesnt really have any ideas either other than just taking in more salt and fluids.

I hope we are able to get your minds back soon!

Love,

-Mary