Kitsakatsa

I think there's alot of interplay between symptoms of Addison's and POTS. Half the time we think I have that in addition to POTS. Do you have any areas of darkness on you skin (besides outside elbows)? I understand that Addisonians have severe leg cramping. These are tale tell signs (along with weight loss as previously said) that separate the cluster of symptoms from POTS. There is such a cross over (adrenals, I believe) that Florinef is used for both. I wonder if anyone has ever had both.... interesting. Kits

Have they checked your thyroid? Have they checked your spinal cord for a tumor? The autonomic signals are transmitted through the spinal column. Kits

I think this comes down to three factors: 1. tend to eat starches and carbs, 2. gastroparesis causes some nausea and patients tend to begin eating foods that will not ferment (BRAT food diet). 3. Body absorbs more from food in patients who have periodic starvation, and absorbs sooner (esophogus) in patients who tend to vomit their food. I learned this from a nutrition class I had to take. I wish I could find a nutritionist who specializes in chronic nausea. I tried to consult a regular nutritionist to see if I could improve my intake and they had no idea of how to deal with long term nausea. Kits

Oh, has anyone else noticed your stomach not growling? I can be the hungriest ever. No growling. Isn't that wierd?

I'm with Kay. Eating through nausea is extremely fattening. I am pretty much on an exclusive carb and salt diet thanks to pots. That means Ramen Noodles is the closest I come to meat. I am hooked on fiber one bars and anything that is made of bread. The best things I have found for nausea are bananas, rice pudding and mandarin oranges The worst things I have found are meats, water, greasy foods and anything with garlic. I have tried baby rice cereal and it seemed to work well. It wierds you out a little, but I was impressed at how well it sits. Kits.

You don't need to face this alone. You can be the "non brave one" on this forum. I'm with Firewatcher. This might be fixable. Don't be too hard on yourself. Everyone has burdens. I was once 32 with POTS and my friends were doing all the really great things in life. Getting married, having babies, going out to clubs. I was stuck sitting on the bathroom floor with a towel, gingerale, and a realization that I had just missed another christmas party and had canceled on my friends yet once again. My spare money was going to doctors and meds instead of Victoria's Secret. It was not fair. but, you know what? A few of those friends had horrible marriages and were divorced. Some had to move away from all their friends and family when their husbands were transferred. Some of my friends had babies that have turned into total screaming brats that never sleep and are chronically either wetting their pants or are stinky and sticky. Not everything was perfect for everyone, or as perfect as I thought their lives were. The one friend with terminal cancer has said "if Carrie can do it, I can do it. If she can deal with all that, I can deal with this". Even though my friends were off living their fab lives, apparently they were watching me and when things started to turn ugly for them, they turned to me because they knew POTS had made me a stronger person. Its hard to see where our path will lead us, but it just may be that the best things in life for you are just on the other side of this ordeal. You are sooo young! Find the little joys where you can find them right now. If it means jumping on the bed, do it. Eating those tiger tail twinkies for dinner- do it. Just remember that our lives are made of chapters, and this is just one of your chapters. Your book has not been written yet. One big giant hug, Kits

I forgot about the Marinol. I did take that and it did work pretty well. It gives you the munchies, but I was put on it when I had malnutrition secondary to nausea and it did help me tolerate "heavy" foods and liquids like applesauce and sports drinks. It got me out of getting a feeding tube, which can happen when you have heavy nausea for a long time. It comes in capsule balls that you have to refrigerate. It layers well with higher Zofran doses and compazine. I'm sure your son's doctor will know the best dosing for him for anything that can be tried. Hope this helps, Kits

Not to beat a dead horse, but.... Has he tried 12 mg of Zofran? Doctors like to prescribe 2mg and that does nothing. When I get into 12mg and beyond, then something starts to take effect. Chemo patients are allowed 24mg. I've back to backed the Zofran so that it overlaps to 24mg and that is when it is a little more effective. Also, the IM injections tend to work much, much better than the pills. Its also cheaper because home health can get it for you and it counts as you out of pocket for the year, usually. Compazine is my frontline med. Nausea is my main symptom and Compazine makes life bearable. Also, think about Clonidine. Something magical happened when I started taking it at night. The nausea the next morning was cut in half. I don't know why. My doctor tried it on a whim for nausea and it worked! Its traditionally given to lower blood pressure, which is wierd. Somehow the body does a counter move that helps POTS. It has been a big, big help!!! Could do without the funny hallucinations at night, but then I'll go through about anything to decrease the nausea. Hope this helps, Kits Ps. Be careful with Anzemet. Reactions include heart block and dangerous plummeting blood pressure. I went into shock on it when the ER gave it to me. I don't know if all POTS patients might react the same way. Also, watch out for Inapsine. Apparently most people who are administered it have a bad reaction to the point where I had to beg the pharmacy to even release it to an outpatient and I wish I wouldn't have. If he tries either of those meds, keep an eye on him.

Make no mistake, I am a God fearin' woman, and this is a true story. I laid myself down for a long winter's rest and awoke to a visitation of what I was sure was the ghost of Christmas past. It appeared from the base of the Christmas tree as a black blob and seemed to get bigger and darker. Something in my mind told me that light attracts light and dark attracts dark and this thing would only approach me if I had sins to repent. It darted sideways in to the tree and out again, and much to my dismay started to come in my direction. This shapeless orb floated on the floor closer and closer to me and spoke a sudden: Meow? Yes, lights on- that shapeless black ghost was my favorite little cold nose: Mr. Banks. You are right if you guessed it- the Christmas tree was the Clonidine Hallucination. High Five to all Clonidine dreamers! Merry Christmas Happy Holidays and Heres to a year with lots of coupons, places to sit/fall/lay down and Merriment and a laugh where we can find it. Kits

Don't believe in aliens, but nice try. About the mirror and stuff- wow! I would be so out of there! I have those lovely clonodine hallucinations in the night though and one time I saw a coral angel. It was awesome. Got to love the side effects of some of these POTS meds! Most of us have been beaten up emotionally just getting diagnosed and then finding and keeping a good doctor. Then add the experimental meds in and by the time you get to the crazy side effects you wonder if you are actually the same person you started out as! I guess ghosties are the least of our worries huh! Kits

I would be very afraid of what a dog would pick out for me to wear!!! Oh my gosh! I would be all "nope, nope, interesting...nope, nope, start over... nope"! Load and unload the washer and dryer though, who couldn't use that?!! Kits

I've tried both and the thing is for POTS patients, that those and provigil just bring you up to more normal brain activity. Ritalin helped but made me secretly mad at EVERYONE. I would get really quite on people and I everyone was irritating as ****. It was the opposite reaction of Percocet- the drug that makes me want to hug everyone and follow them around. I had to be careful with Rit to not blow up at work. It was like eggshells. Adderall has been phenomenal for me. It is actually a schedule I- extremely addictive. Sometimes I forget to take in on weekends though and I don't notice anything. I'm on 60mg/day. After I started taking it, I noticed that I could work longer hours without getting so sick. My house is scary organized. I won the window office at work and took on extra projects. Now I'm being recruited for a job that will pay almost double what I'm now making by one of the highest Directors in the Corporation. It has really paid off for me- and now its generic so its cheap! It not only takes away the brain fog, but it pulls you out of your POTS misery a bit and gives you mad concentration. It is a college abuse drug though so I worry that it will be banned in the future due to the street value and abuse potential of it. If you can't take Adderall, I would take Provigil. It helps to break the grogginess of compazine. Kits

I know, right? I'm curious too. On a lighter note, my cats could use a service dog. They are constantly falling over. If I throw a toy for them, they run three steps, fall over and then use their claw to propel themselves sideways across the room towards it. They would love to have assistance. I think they would even settle for a service hampster! Well anyway, would the dog help you be more independent? I have been considering getting a dog dog, normal dog and the thought of hauling the chow (paying for the chow), taking it out for walks at 2 am and etc is enough to make me sadly settle for a non-dog life. Do you think the responsibility of the dog like those things and getting home in time to let it out wouldn't be totally hard to do for a POTS patient? Can you lift 75 pounds? What if it got hurt? Just wondering. Kits

Yes! Mountains of Utah. I will have to look into that. Thank You. We have deer ticks and they can cause so many wierd problems. In fact every year we hear "just rip it out because if you burn them, they'll cack up the toxic stuff into your skin" and then we hear the opposite next. It a wonder more people don't have tick related problems! I'm happy to report that I've not been visited by any spirits in the last two nights, that I know of. I was missing chocolate eggnog taffy out of my advent calendar, but then I sleep eat and if ghosts eat that stuff then I'm going to make a million dollars on a movie script! Thank you everyone for your replies!

Some of this stuff is such a mystery! Then there is always the battle- should I mention it to the doc, should I not, does it make me sound hypo... I do think I have a guardian angel (or two, three) that might get in the way of any scratchy ghosts. I hope anyway. They just look so strange, I was almost wondering if it was a Niacin rash because I've been doubling up on that for the last few days. I consulted Dr. Google enough to know it is not scabies or shingles. Beyond that, I don't know. I splurged on a space heater and it is helping with some of the pain, shivvering was not helping and Utah has been hit with some very cold temps. I did have a funny dream once about my grandmother who has passed on. We think my grandfather (who died young of results of a mine explosion) had POTS. So I always think that he and my grandmother are helping me. But anyway. She was sitting in her kitchen and I asked her what would make me get better from POTS. She said that the answer was in that cupboard behind the glasses and pointed to a cupboard. I, of course, woke up opening the cupboard. I asked my mom what was in that particular cupboard behind the glasses and she said "I know!".........The brandy!!! LOL! Perhaps! Kits

I was dxd with Raynauds secondary to POTS a few years ago, but I have been having wierd problems in the last week. I have one finger that is worse than the rest and one hand that is worse than the other. Of that arm, my finger tips, joints, and elbow hurts. Of the lesser arm, my shoulder hurts. Is this normal for Raynauds? It is not debilitating pain, but is achy and a total annoyance. My shoulder feels that I just had surgery. Its enough to make me kind of an oscar the grouch. Also, I wonder if anyone has developed a rash from our POTS meds? I have a rash on my back that comes and goes and looks like little cat scratches. It does not itch or burn. There are no red spots, just scratches and the skin feels dry. I was watching something scary a little while ago and they mentioned ghosts can scratch you, so I'm really scared about that! I don't think they can scratch you, but I do sleep on my stomach. I would really feel alot better if someone had this rash. I don't want ghosts in my house! Okay, that's enough info to get me into a psych ward. If anyone has any ideas, I'd love to hear them (not scary ones) Thanks, Kits

You people with the ellipticals!! I would fall off on purpose just to not be on it. Those things tick me off. They look fun, but then you get on them and OMG! My best exercise has been walking in big places. I walk in the hospital I work in: no hills, perfect temperature, chairs everywhere, elevators, coffee bar on the first floor, make fun of people's clothes, its all good. Maybe find a mall to walk in? It would be easy to rest and there are usually a bunch of seniors, so its not like you would be the slowest one. I don't know, this is a big struggle for me too. Kits

I would set the soonest appt with your doctor, then I would get to the benefits office and get the paperwork for intermittent FMLA asap. You will need to fill out these papers with your doctor. This protects your job. I would do this before meeting with the boss, my opinion. The FMLA paperwork asks your doctor to generalize how much work you must miss. Be clear with your doctor about how much you are missing. After the FMLA is filed and approved, meet with your boss and you may want someone from HR with you. You don't want the boss to record somewhere that you are admitting that you cannot do your job. I would take a witness from HR and just say that you are new to FMLA and want to make sure that you are doing everything correctly. Now, FMLA protects you from losing your job as long as you are out no more than what your doctor prescribes, but it also allows your employer to reassign you to whatever position they feel will make minimum impact on the department. They cannot dock your pay or lower your pay. I would make sure your doctor writes on there the maximum amount of hours you can work. Esp in a company with widespread layoffs- you need to transform your standing from slacking off here and there with the days and hours to disabled. As a Manager, I would not touch disabled with a 10 foot pole. You need that kind of backing behind you. I didn't read your location, I assume you're here in the states and not in Britain or something..right? Kits

I would set the soonest appt with your doctor, then I would get to the benefits office and get the paperwork for intermittent FMLA asap. You will need to fill out these papers with your doctor. This protects your job. I would do this before meeting with the boss, my opinion. The FMLA paperwork asks your doctor to generalize how much work you must miss. Be clear with your doctor about how much you are missing. After the FMLA is filed and approved, meet with your boss and you may want someone from HR with you. You don't want the boss to record somewhere that you are admitting that you cannot do your job. I would take a witness from HR and just say that you are new to FMLA and want to make sure that you are doing everything correctly. Now, FMLA protects you from losing your job as long as you are out no more than what your doctor prescribes, but it also allows your employer to reassign you to whatever position they feel will make minimum impact on the department. They cannot dock your pay or lower your pay. I would make sure your doctor writes on there the maximum amount of hours you can work. Esp in a company with widespread layoffs- you need to transform your standing from slacking off here and there with the days and hours to disabled. As a Manager, I would not touch disabled with a 10 foot pole. You need that kind of backing behind you. I didn't read your location, I assume you're here in the states and not in Britain or something..right? Kits

Stacy RN, have you thought about being an auditor for an insurance company, or research? Maybe your hospital has a research department. You could do IRB work. Also, Risk Management or Compliance are departments that always seem to be screaming for RN's at our site. Does your hospital have an extensive Materials Management department. Ours hires RNs for contract work. There are also non-medical companies that always have to have an employee health nurse on site. I would not be able to do 12 hours. If anything, I would start your paperwork for intermittent FMLA right now. Then, you cannot be fired for going home early if you are sick, or calling in. Have you thought about quality management work? Maybe your unit needs a patient or nurse educator...? You may even be able to get into Finance, although I don't think that would match your salary. Kits

I just thought of something, is your doctor watching you for cerebral vasculitis? The blood vessels swell in the brain. It causes intermittent stuttering. I was checked for it the first time I had bad stutters. I ended up having a really high white count. You may want to get a checkup of your blood work. Kits

When I am extra tired, I stutter. I have a hard time getting words out. I inevitably end up calling it Pos...t..s...that's when I know things are not going well. I feel there is definately a brain connection that does not connect. Sometimes it feels dangerous to do things and drive. Those times always accompany stuttering. Kits

From what I hear, you'll either love them or hate them and it will be very clear whether they will work for you. Some lower blood pressure. Some make asthma much worse. I was on them for less than 24 hours, got bronchitis and crashed into every wall because suddenly the world was slanted, or I was slanted. Not sure which. I have heard of people with great success though. Even though my experience wasn't the best, it was worth it because then I knew that I wasn't just sitting on a pill that could make me better. Kits

Oh, second part of the question. I have intermittent FMLA to protect me, but if I take any time off- my job becomes more demanding, so time off is not so possible despite the protections. I don't have children though like Firewatcher. I cannot imagine. You are right, that would be much harder on POTS than a job. I applaud the parent's out there. That cannot be easy. Kits