Cala

Headaches...now that's a topic I sadly am very used to. As a matter of fact that's the first thing that started me on the road to my diagnosis of Dysautonomia and my neuropathy. I've got them "somewhat" under control now but they are still very much a part of my day to day life as I have to be wary of the triggers that can snap them out quickly and render me senseless and sometimes unconscious. I take Imitrex 100mg tablets when I get one that takes me down hard and I have 6mg injections that I use when I either can't keep the tablet down or the digestive system is in "abrupt stop" mode and it's not moving at all. (Let me warn you, these shots HURT, not the needle but the medicine in the muscle will make you cry) These work amazing for the most part for me but they do come with a list 3 miles long of warnings as do most triptan drugs and you can't use them too often because they will start to cause rebound headaches that are prolly worse than the originals :-( Secondly I take Topamax 100mg a day. 50 in the morning and 50 at night. I tried just 50 a day but that dosage made me mean LOL I like to think of it as just being outspoken but that's just putting it mildly. I honestly was a real B on the witch. This medicine will make you stupid. Forgetful, dumb as a box of rocks. SO if you take it, don't think your symptoms are getting worse and your getting brain damage LOL your not. It's just the medicine and it's not permanent. It does work for the daily constant headache I seem to have always had and didn't realize till it went away. And it made the triggers less potent, less sharp to me. (something to be said about being dumb here LOL) but it works :-)

I probably need a wheelchair sometimes but to be honest I'm truly terrified of what my friends would do to me if I did LOL I don't speak other languages and I'd be a fright if I did ha ha ha I wish I'd been a fly on the wall during that episode. Not to witness the pain part but the look on their faces when you started hurling that! You must have sounded like a demon! ROFLMAO But in all seriousness, I do very much avoid most social things and have become quite the hermit. Or aka crazy cat lady because I prefer staying home with my kitties to risking all the things that can go wrong out and about among other people. It does seem that everything can and will become a trigger, given enough time. Smells, sounds, lights even temperature shifts. Emotional up and Downs do it too, traffic, store lines etc. I think I've been out twice this year, aside from Dr visits. Both were just out to eat and neither was comfortable. I'd much prefer hearing all about the party afterwards or reading about it on Facebook any day than actually going :-)

I think the social situation is where a sense of humor saves me a lot of grief. That and having some very thoughtful quick thinking and twisted minded friends. Things have gotten better over the years since I've figured out how this stuff affects me. My friends have learned. The last funeral I attended I had to sit in the receiving line (old school funeral) and accept the condolences of the entire place of handshakes as they exited and my friend, bless her heart, leaned over to me when I thought I was truly about to pass out and whispered, "just think how many of those old men have been to the bathroom and not washed their hands", yeah...well that sure kept me from passing out... so you can see, sick humor has it's place as long as it's whispered ha ha ha Several years ago, before I was diagnosed with anything other than severe migraines, my friends decided to get me out of the house by taking me to a haunted house. (So you see this coming...) well I'm a level headed person and I knew they were trying on help and I "felt" alright so I thought "what the heck" Keep also in mind I had only been to a general doctor for my condition so he had never discussed triggers with me and I was relatively young and new to this condition and thought I could handle anything. Nor had I heard anything can't an adrenaline surge or what it could do LOL We are at the entrance, it's cold, I'm starting to feel the effects of that cold and I'm getting uncomfortable. By us is a portapotty that really smells horrible and it's getting worse by the minute. I'm trying to hang in there right? No one else seems to be bothered so I pretend to be having a jolly good time. By the time we get into the building I'm seeing auras around things and sounds are starting to distort so I should have backed out then but I kept pushing myself. Smoke machines and banging sound like cannons. Although up until this point nothing has really "scared" me yet. Then it happens LOL this thing swings out on a pole, not even sure what it was exactly. IT was furry and it screamed bloody murder and it was supposed to go past us but it didn't make it. I caught it and ripped it off it's rope or what ever moored it to the ceiling. My friends were cross between laughter and awe. The guide was seriously distressed at this. I however was more than that...I was beyond freaked out. I again continued on and went up a ladder into a room and got hit full blast in the eyes with a led strobe light. And this was the last thing I remembered for a long time. Triggers, strobes? Pots? Ladder? Oh I had it all that night...took me a week to get over that one. I woke up sitting in a rocking chair with Freddy Krueger standing beside me keeping an eye on me. (Yet another shock..will this night ever end) my well meaning friends wanted someone to watch over me while they finished the haunt...they did catch me and carried me out of there in one piece LOL But I had to share my story. It's worth a few laughs if nothing else.

I think I'm somewhat a weirdo in that department LOL Heat is my friend so I kinda doubt it. The only time it would be is if I was overheated because I don't sweat until I've got a fever and at that point I guess I'd be technically "sick" 101F+ LOL However...since your mentioning temperature extremes I will say that cold is my enemy in the worst way and can bring on these symptoms in some nightmares from....yeah. Makes me wonder though, I wonder if some of my worst experiences (like at the dmv) were brought on by the cold air conditioning in the place after coming inside from the warm summer air outside? Similar times at the grocery store and anywhere that was inside. Not limited to just the internal problems but also the passing out problems....hmmm Now THAT IS something to ponder. I love how you guys make me churn my brain around and think outside the box!

Oh! It's the poo poo chat LOL I joke around with a friend of mine all the time about this because he uses my phone to telephone his mother, who has gastrointestinal problems, and they always discuss them, without fail. I call it the poo poo train. Anyway.. /giggle Mine is always loose stools. Sometimes sneaking up on me at bad times. Real...bad...times (waiting in line at the dmv etc) If you've ever had to do the poop shuffle with a cane up a flight of steps you'll understand. Really interesting unpredictable gas (I think this is related to the Mestinon and the lactic acid in it because I'm lactose intolerant maybe) but sometimes it's just random. It can prove highly amusing. I say this because I don't embarrass easily and I will blame it on that uppity lady if the notion strikes LOL. OMG lady...really??? Gastric slowing? Sometimes it just stops? I think that's when my muscles seem to be all locked up. Often I'll find that things come out not much different than the way they went in, which means to me my body isn't even digesting it at all it's just looking at it and saying "reject and eject" LOL Sometimes having a bm will bind me with cramping so bad it bends me double and then just all of a sudden, stop like nothing happened. Weirdest thing in the world. It is almost like an internal Charley horse than a poop cramp. I probably will have to get it all looked into before long I'm sure but I've set a body alert weight for myself that I won't let myself get below. Once it gets there I will do something then. I dread adding another doctor to the ever growing list I already have.

Kinda reminds me of that joke about all the body parts arguing over which one was the most important LOL I'm glad your feeling better and they are listening to you FINALLY! Get some much needed rest and keep us updated. Still worried about you but not as bad now. /hugs

Keep an eye on your output. Hope they gave you a bottle or one of those toilet hat thingys to measure how much you pee vs how much you drink. Keep tabs on it. Don't let it get to the point it was before. If it's even hinting at getting that way, start hounding them like a kid wanting Christmas present hints LOL don't let them push you around.

Good .....grrr...I hate having to censor myself. I can't remember if I even knew what part of the world your in racer but this is just WRONG! DO NOT take that thing out yourself! I'm getting heebee Jeebeeies just thinking about that to start with. It shouldn't even be an issue here. What emergency room sends you home like that?? I thought those things had a tube lock on them for the nighttime....OK..I'm getting heebees again here...

My chest muscles do that more so than my abdominal muscles do but it's annoying and very painful to the touch. I usually don't realize how bad it is till someone will hug me or I pick up one of my cats and they push into it and wow ouch it hurts. I've never made a big deal about it to the doctors, I always chalked it up to stress and how fast my heart runs. That and how when I'm startled I could prolly chuck a Volkswagen over my head LOL so I guess all that "oomph" has to be stored somewhere. I tried a muscle relaxer once, that was not a pretty thing. IT took all that oomph away alright and I discovered that's all that I have holding me together LOL Relaxation, calming music and deep breathing are about the only things to ever really help for me. And even that doesn't totally stop it. Just part of the strange that's me :-)

"if you have a catheter in and it is working, then you are not having problems with retention". It makes you want to just reach out and start slapping...seriously...do these people take part in high school smart *** classes or what? OMG I think I need more meds... I'm going to need anger management from just reading the forum. Racer, I'm not sure if I need to offer you a shoulder to cry on or a punching bag. Either way this ***** big time

Sounds pretty much in your favor actually. So keep us posted on that.

I forgot to mention he did double the Mestinon to 2 60mg doses a day instead of 2 30s so not all was lost Sorry I am still in shock just a bit

I really need to get this off my chest. Dr visit today. On the last visit he told me he's certain my system is starting to "slip" and he wants me to monitor my blood pressure. Lying down, standing 1minute, standing 3minutes. I'm religious with this right? He never even looked at it today. Did not even glance at it.... A few days after last visit my system did indeed "slip" as he put it. Blood pressure, heart rate bottomed. Almost ended up in the hospital. Came off his beta blocker experiment on my own because after 4 days of calling and leaving messages that were never returned I finally got "permission" to come off the drug. Explained all the pain I was in, how my heart has went crazy, currently wearing a Holter monitor because of it from my general practice doctor. I mentioned some ideas, medicines I'd researched. I had 2 pages of symptoms, some old some new. Some rather alarming developments. He just nodded and grunted. Turned on his chair and said to increase my Fludrocort .1mg to 2 a day (OMG what?) see a cardiologist and to have a nice afternoon and left the room.... Now....I'm not one to get upset. I have a referral to Vanderbilt currently so I've got help coming but to have off the wall flippant care like this was just painful in and of itself. I sat there in shock. Seriously the drug he wants me to increase would make me retain so much fluid it would most likely kill me if there is anything major wrong with my heart. Sorry to rant and rave but seriously, this man knows Dysautonomia. He's an expert. He diagnosed me! How on earth.... it just blows my mind...

Dr has me on a Holter monitor currently. I was carrying things for a friend across a parking lot (maybe 10 pounds) and I set that thing off like a Walmart security alarm. My heart went crazy. I wasn't paying attention to it until the monitor went off (obviously) because it's something normal for me. But afterwards I felt that all too familiar weakness, lightheaded limp... took me 30 minutes of sitting on the truck running board to get back up again. I thought my friend was going to have a heart attack because he thought I was having one LOL I called it in but the people at cardionet were about as honest as a toddler in a cookie jar can be LOL but I'm going in next week to get this thing off so maybe I'll have some answers as to what is going on in there when that happens? Picking up things does it, heavy things are the worst. Happens when my hands are over my head too, cleaning, washing hair in shower etc, steps..oh forget steps... I have 3 steps on my front door and sometimes I have to sit down to navigate them even when I feel fine. It drives me crazy!!

I used to tan every winter. I pretty much had to or I'd "come out of my skin" so to speak. Now I know why but back then I didn't fully understand why it helped me so much. I didn't go every day, nor tan long. Usually just 10 minutes 3 days a week tops. Just enough to give me what I was missing by being indoors all the time. It always helped me. Don't go crazy with it though. The leather look is NOT sexy in my book.

When I jump from 70 to 130 or so it can take me down like a rock LOL splat...out cold. I guess what gets to me the most is that there seems to be a dozen different reasons why we are affected, and they change from day to day. Sometimes hour to hour. I'm still early enough in the game I do have some good stretches of time I can "forget" I'm sick with this. A few days here and there. Although they are not as often as they used to be. It just feels like a guessing game more often than not. And just when you think you got it figured out, it changes. So if you can count on one thing with Dysautonomia it's this. You'll never be bored with how it affects you.

Blood glucose monitor. You can get them at Walmart but they can be somewhat pricy. You have to have the monitor, test strips and the little finger sticky thing (ugh) If you mention your concern to your doctor I'm sure you can get your sugar tested there but unless it's acting up it's hard to judge, or at least mine was/is. Although with the right doctor he may well prescribe a tester with no problem whatsoever. Best to find a friend or relative who has one and let them check it for you if you can.

The only other thing that comes to mind is something that hammers me at random times and I totally forget about. My blood sugar. I stay borderline hypoglycemic with this crazy condition we have (not diagnosed but have a meter and know my numbers well) and for no reason whatsoever, my body decides it wants to prepare for a pie eating competition that never happened. My sugar can plummet like a rock. And when it does my heart rate will be fairly decent but it feels like the old Ford is about to throw a rod LOL Try testing your sugar? Or grab a snack, see if it helps any. I know low sugar is evil for my migraines so it may be worth a try at the very least.

I'm not sure about the mechanics of it but your totally right on with the symptoms. It always seemed like I have less problems with feeling awful when my heart rate stays up vs being low and then jumping up from 60 to 90 quickly. It may be deconditioning or just flat out shock because most of the time that's what it feels like to me. I always compare my body to an old Ford engine LOL ya gotta give it some warning before ya just up and go or it's a gonna give ya problems LOL When my heart rate is low like that I HAVE to take it slow getting upright or I will do exactly as you describe. And even then it's "iffy"

I see a neurologist who is an autonomic specialist, I was lucky enough to have one in my town because up until I was diagnosed I'd never heard of or imagined I'd have something as quirky as what I've got LOL I'm also blessed with a general practice doctor that very familiar with it and what he doesn't know, he's always willing to learn. He's also willing to share colorful metaphors with me when he thinks my neurologist is getting too "let's test this" with me LOL

I don't currently other than Fludrocort .1 mg and so much salt I feel like if I went into a stable the horses would chase me around trying to lick me LOL I was on propanolol (sp) 60mg er for a while and I honestly thought my neurologist was attempting to kill me? Why is it impossible to get those people to answer the phone??? Anyway... My neurologist agreed quickly when he "finally" heard my numbers, "oh yes please don't take any more of those!" My sitting casual blood pressure was normally 110/70 to start with, heart rate about 100 and to dose me with that was epic LOL. My problem is it NEVER stays there. I stand up it jumps then drops, I lay down it bottoms. I'm currently wearing a cardionet thingy that I'm supposed to hit whenever I feel symptoms but they didn't define what symptoms I'm supposed to worry about, I have so many LOL so I'm 24 hours in just eyeballing the thing. About to dig on the forum for some ideas. Anyway...back to the question...man I'm easily distracted... the jury is still out on my bp medicine until I get the results of this. SO any suggestions would be welcome. My doctors sure could use a gentle nudge that's for sure.

That is a spider, with a water droplet for a hat LOL I love spiders!

Hanice I'm 43 and "wolf whistles" to the boob shot /giggles

OK here we go. I'm not wanting everyone to spew their bad habits here LOL I was just curious to know the way these two drugs affect others. I was/am(sometimes) a smoker. I discovered that once I developed Dysautonomia that quitting smoking was not a challenge or even a second thought. Which shocked me as I'd tried several times in the past to quit unsuccessful and painfully. It's something I can do or not do. Now...before you chew on me for something bad let me explain LOL Smoking raises my blood pressure. Sometimes when everything else fails. I usually opt for a pack of the nicotine gum instead now days but early on a quick cigarette would do it fast. On a more dangerous note..it also spikes your heart rate. So don't think I'm suggesting starting puffing LOL don't! I'm just telling you what it did to me. Caffeine, I can't function without actually. The doctor knows I'm running on it and he doesn't "suggest" it because well...he's a doctor LOL but he's fully aware what's keeping my blood pressure just above pacemaker speed. At least that's my observation. What's everyone else's views on the bad boys? Ex smokers like me? Did you have problems quitting? Does nicotine bump blood pressure if you still smoke? How about that Java? :-D

Surges? Oh boy...are those fun! I think Godsgal summed the major ones up very well. But mine are more like, you've just missed that 18 Wheeler by the width of a gnats eyebrow and your so shook up you have to pull over and you swear you can SEE your heart beating in your shirt. Kerthump! Kerthump! I had my fiance wake me from a blood pressure crash one day, I still do not know how low it was but I was barely coherent and wasn't even able to sit upright without help. He gets the bright idea to try to "help" bring me out of it by clapping his hands hard and loud right in front of my nose! If any of you are like me, you already know the result. A rush of untold horror. Nightmare of epic proportion LOL To his benefit, my blood pressure shot up violently, at least momentarily. I shot up also, pushing him backwards. I flapped around like a wounded goose screaming, burst into tears and passed out in the floor. It takes me hours to get over those, sometimes a whole day I'm "not right" from it. It feels like I'm in 3rd grade again and that bully Ada the Potato is in the bathroom waiting and I have to pee so bad but I know if I go in there, she's going to beat me up and if I don't, I'm going to pee on myself and if I tell, I'll be a tattletale. It's that level of hopeless panic to me. That's the only way I can describe it.