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.

Water, helmet, bag of meds (midodrine, asprin, albuterol, motrin, pepto, eye drops) HR monitor, BP monitor, mini fan, hand warmers. I think that's the basics

Twice tonight I fainted and then according to my friends I began convulsing: head slamming repeatedly onto the ground, legs and arms very stiff and jerking, bit my tongue, and making a weird choking noise(?). Eyes were closed. I vomited when I woke up. My HR has been recently dropping, and before the episode my BP was 72/61 and HR was 160 while sitting. Both of these fainting episodes occurred while I was still sitting (shortly after sitting due to being dizzy) - which very rarely happens. I awoke very confused, thinking I had just fainted and then woke back up. In reality I was out for roughly 5 minutes. One was before taking my midodrine, the other was about 3 hours after taking it. My theory is that both my HR and BP dropped at the same time... would this cause it? Why wouldn't blood have returned to my head when I was laid down? I'm really at loss of what I should do. Definitely contacting my doctor tomorrow. Just glad that I was wearing my helmet... which is now scuffed to shreds due to one of the episodes being on concrete.

Hmmm keep your HR under 120? Wow. I don't think I could do that; never seen it below 120 when standing

That makes so much more sense, thank you! And I have tried florinef, but I got a really bad reaction within an hour of taking it and now can't take it. Also tried BBs, but they messed with my breathing too much. So for now, it's midodrine or nothing.... sometimes I think nothing might be better lol

I was just talking about this! I get it pretty often as well

1. Syncope and near syncope - if I'm standing longer than 5-10 minutes, I'm going down. 2. Myoclonus - jerks in jaw, eyes, and arms mostly 3. as of recently, HR fluctuations - skyrocketing, then plummeting...kinda like ping pong 4. tied between headache and nausea. They seem to always accompany each other and never really go away 5. fatigue coupled with brain fog, they seem to go hand in hand. Next week it will probably be different

Emma, yes my BP skyrockets when my HR plummets almost every time.

You guys make me feel so much better! It's definitely better than walking around with a black eye, or a busted forehead and have people stare at me for that. I painted a dysautonomia awareness ribbon on both the front and back of it. Any ideas about what else I can put on it? I was trying to come up with something clever to go on the back, maybe a good ice breaker or something to divert attention.

Good to know I'm not the only one! My heart rate has continued to drop periodically today, followed by periods of really high blood pressure. I plan to call my doctor tomorrow. We just upped the dose of Midodrine, so I'm thinking that may have something to do with it. Though, he assured me it would have no adverse affect on my heart....

We have a pretty similar story! I also have syncopal episodes upwards 30x in a day (though it averages about 10x per day). After a few of my falls, one of them being my head through a glass table, I noticed that I would have short term memory issues lasting for a couple of hours, I was having visual disturbances, etc. I never went to the doctor after a fall - bloody noses, busted head, broken teeth, etc; I just couldn't bring myself to go to the doctor. This was all over a period of several months. (disclaimer, it is very important that every see a doctor after a serious head injury - do as I say, not as I do lol) At my last visit with my doctor, I talked about how I haven't gone several months without a headache everyday. My eyes were having trouble focusing, and I was seeing spots all day, everyday. My cognitive function had decreased slightly, but I could tell a difference. I became very light sensitive to the point that I keep all lights off in my apartment at all times (hey, it saves on electricity too!) His guess was that I had had minor concussions that went unnoticed by anyone because I was too stubborn to admit that I was having that much trouble. The frequency of these likely concussions has left me with all of these problems that may or may not heal up on their own. In the meantime, he has asked me to wear a helmet to prevent any further damage until my appointment at Vanderbilt. So I guess to answer your question, I'm sure I've had my fair share of concussions, although I can't say for sure how many. And yes, I can tell a noticeable difference in cognition.