Alyssa

I guess the next step is to drink a big ol cup of coffee and look at my BPand HR. hopefully that will bring some answers my way. Could you guys tolerate coffee before dysautonomia?

Does this happen to anyone else? And does anyone know why? I have a love/hate relationship with coffee. I used to drink it all of the time as a pick me up, and then for awhile I quit drinking it. I started drinking it again a few weeks ago, but this time around I am having the opposite reaction. Whenever I drink coffee now, I get immediately sleepy. I had a cup this morning and afterwards my hands and legs got shakey and my eyes got heavy. Now all I want to do is curl up and sleep. It makes no sense at all. Does anyone have an explanation? I hate to give it up entirely, but this is so not the desired result!

Thanks for some insight. My doctor suggested it, but I told her the idea was a bit unsettling and I wanted to think it over. I can't help but wonder of this is a wise decision at only 22. Could it cause problems with fertility later on?

After close to a year of waiting, I finally had my appointment with Vanderbilt yesterday. Didn't learn anything new, just once again confirmed my diagnosis of POTS and NCS. At this point I have exhausted most medications primarily due to allergic reactions to them. The doctor I saw mentioned starting medication used to suppress your menstruation since I get so sick during it. Has anyone gone through this? After being on here for close to a year, I dont remember any posts about it.

I work training service dogs, so I hope I can be of some help. Most organizations will require that you spend time training with them, and even of you feel like crap, it's a great way to get ideas on coping with the dog and seeing just how you can use him. If you tell them that you fear you may not be well enough, they will question whether or not you will be able to give the dog daily exercise. You have to be able to provide basic care with an SD as ou do any other dog or they will begin to pick up bad habits. Be prepared to give them a list of things you would like for the dog to be able to do - remember these do not count as tasks unless they are something that you absolutely can not do for yourself. Be weary of many organizations, I have heard bad things about some of the places listed, however I will not name which ones. As most on here know, I myself have a service dog whose primary function is medical alert and response (he alerts to fainting and responds by tunneling under my legs to raise them, getting emergency medication, getting help, etc.). He is self trained. If he doesn't get atleast an hour walk twice a day (not including public outings) he begins some very poor behavior that could affect his job. Just something to keep in mind.

Showers , warm or cold, don't seem to help any. The itching will return as soon as I dry off. Will look into neuropathy since I know very very little about it.

I wear a modified hockey helmet. I put in memory foam padding on top of the existing pads for extra support and changed out the chin strap for one that basically covers my whole bottom jaw. I only wear the strap when I'm going to be up for a long period of time since it makes it hard to eat and I feel weird talking in it lol.

I'm on the "high" side for a runny nose. One side is always stopped up, and the other side is always running. I thought I was just weird =)

I'm not too familiar with neuropathy, but I would tend to think that's not what it is. Alex, it's definitely itching for me. Feels like I have poison ivy all over. The docs are baffled, but of course it's never there when want to show them. I did a google search and I'm not alone on it, but no one has an answer =/

I have myoclonic jerks which I am pretty sure is caused by the autonomic issues. The muscle twitching though, is definitely not. I have it a lot in my face and sometimes my mouth with get stuck open and you can see all the little muscles on that side of my face moving. This began after a head injury that led to a seizure. I know what you mean about looking all banged up. That's one area that my helmet has definitely helped, I don't get nearly as many black eyes and bloody noses. I use a hockey helmet at the suggestion of my doctor. He wasn't on board initially, but then he realized that the amount of faints I have per day is causing more and more problems. I even shattered a glass coffee table with my head once - how I didn't get anything besides a knot on my head is beyond me. I am looking into ordering a "special needs" helmet that I saw on ebay as I like it better and it's not as bulky. But a hockey helmet definitely offers the best protection.

I've had this going on for about a year now. It happens every few days, with no real pattern other than it seems to happen predominantly at night. I get insanely itchy on my calves and the backs of my thighs. The more I itch, the worse it gets. No creams, lotions, or pills help. Those places end up turning blotchy and red with little raised bumps that can't be seen, but can be felt. I thought it was an allergic reaction to something, but no antihistamine seems to help. I've tried changing laundry soaps, dryer sheets, lotions, shaving creams, etc but to no avail. Anyone else get this? Or have any ideas about it?

All the time for me. If I stand up too quickly, I'll be able to take about 2 steps before falling over. From a lying down position, it takes me approx 1 - 2 full minutes to be able to stand without fainting, though I still can't get very far before I eventually go down.

IMO, any concussion is 1 too many. I've had 10 or so in the past few months that led to very minor permanent brain damage. I get a lot of visual disturbances, cognitive function is down, constant headaches, and I started twitching a lot more since my last one. I started wearing a helmet about 2 months ago and it's probably the best decision I've made. I wear it any time I am going to be up and moving a lot since I get almost no warning with the faints. It's hard to get used to at first, but I'm quite thankful for it. I was just looking at it the other day and noticed how beat up it's starting to look - better it than my actual head! It's quite the confidence booster and gave me a little more independence. Also, mine has a chin guard sine I tend to fall on my face a lot and have now chipped 2 teeth.

I have tons of syncope, but usually very little presyncope. 9 times out of 10, I can't feel it coming on. One minute I'm walking, the next I'm waking up. For the times that I do experience presyncope, it usually consists of severe nausea, hot flashes, sweating, vision gets really bright, can't form words appropriately, loud ringing in my ears that drowns out any other sounds, and I get really jittery.

I only go if I hit my head too hard during a syncope episode or if I am having spasms in my throat that are leading to asthma attacks. Other than that, I avoid them as much as possible as they're pretty much useless.