Kitsakatsa

I had benefit within a couple of days, I believe three days. The one thing you have to watch out for is hypnogogic hallucinations. When I went on it, it was very distressing. I posted the topic and found that some of us replied that they would see very disturbing images that were severe enough to warrant ending the medication. I am at peace now with the hallucinations- some are pretty funny (South Park Kids, LOL!) The best was a Coral color biblical type angel. You have to pay attention to what you think about or watch on TV right before you fall asleep. Another common symptom is to semi wake up and feel like your entire body is vibrating, there is a taste and smell associated with this. Another symptom is to actually see the hallucination and then feel it as well. I caution you because I think this might not only be distressing, but potentially dangerous as well. I can see someone bolt out of bed and smack their head with the fast orthostatic change. That said, the drug has worked a miracle for me. It has cut my nausea in half. Although it is supposed to lower BP for many POTS patients, it does not touch the BP because of the dysfunction that we have. It is one that you have to taper. You cannot end it suddenly. There are some very bold warnings online about this. This is probably more than you wanted to know, but I hope it helps, Kits

I've done a search on disability and I just have some questions and alot of concerns. Recently (since December) POTS for me has become much worse. I've had for about 6 yrs and have been working full time+school. I am done with school, but was working full time until last week. I am just back at the point where I can barely sit up for long, just have an intolerance of everything again. I didn't think POTS got worse after it got better. I have new symptoms-2 yrs ago with purple fingers, 1 year ago with Adies eyes (that in a research study Dr. Low notes as a symptom of cranial nerve lesion and severe dysautonomia), and a thing with my ear canal where I lose my hearing spontaniously. Also, sluggish reflexes. All new in the last year. Now, my Sed rate has been high since December. I've been to Mayo twice with little resolution. I am currently on short term disability with my company. I think the ideal would to be on long term disability. For those who have been approved for disability- I wonder if my profile seems like a good profile to get approved. I am really worried about it. I have an insurance that will pay disability at my full salary, but the approval is very similar to regular disability. The thing is- I cannot go even 1 day without an approval when the time comes. I am single and am my only source of income. I'm really, really worried. Some people say I have it in the bag, but I thought I would ask you, those who've gone through the process to see if you think this is a profile that might get approved (disclaimer- I understand this is your opinion only and an opinion). I cannot return to my job without FMLA retaliation (long story), and yet I am worried that I am running into a black hole. Any help that you can offer is fully appreciated. As you can see, its keeping me up nights. Kits

Well, girl- you've got two difficult things: school stuff and friends stuff. I thought about what I would tell you if you were my younger sister. The school stuff is totally hard. Have you registered with Disability Services? You really might want to do that. I "came down" with POTS half way through my MBA and it was way tougher than it should have been. I should have let my pride go a bit to get registered. That might reduce your stress a bunch and that might actually help you feel a little better. It will give your permission to take tests on a good day etc. Okay here is a POTS thing that I wish I would have known about, but maybe in your case it might not be for you. Adderall. I have big time mental clouds with POTS and I struggled also because I just couldn't thing. Adderall has cleared the mental clouds away and immediately I felt like I had my brain back. Provigil is also good, but not as good as Adderall. I go off of it on the weekends so that I don't get addicted to it. With Adderall, I can get my work at work done way better and I am more focussed. Also Coffee. The friends stuff is hard. OMG every thing my friends do is suddenly done standing for long periods of time, I swear. I don't remember it being that way before POTS! At Halloween I decided I was sick of POTS and we went to this club- well you know there are never any places to sit because they are always reserved. So, I ended up dancing around for three hours and I was so sick that some of the people we met thought I was drunk off my butt because I was so dizzy and not thinking. Fortunately my friend Liz who is a Respiratory Therapist knew what was going on and got me home okay. I was flat in bed for the whole next day and pretty dizzy still the next day. It is hard to pass up fun times. It is hard to go to them and then end up sick. All I can say is that you have to pick and choose. I end up doing way more than I should and even if I end up a little sick- I'm not sorry for it. It sounds like you are one to push the ticket anyway= being in school and away from home. I think sometimes you just have to go do the fun stuff anyway and to heck with POTS. I guess as long as you have a way to leave early and get safely back home is the key. If you feel you wouldn't be safe in a parking lot etc. Its better to stay with your friends and be sick the next day. Just pick and choose. I know a bunch of Surgical Residents where I work that always complain that they can never do anything fun and were working so hard in Undergrad that they never had any fun then either. Just know that you are not the only one who has to choose between fun and practical. Practical. What a horrible word. Sorry. I'm sorry you have POTS. I hope this helps. I guess at least you're not strapped with 5 kids and aging parents in diapers or something. I'm not. I don't know, just thinking of how things could be worse. When I feel bad about POTS and having to date etc, I just watch SuperNanny and it makes me realize that at least I don't have a pack of sticky bratty kids. My life looks rather fabulous then! Kits

Hi. My story is similar to yours except I am a zillion years older. I was admitted for the same thing and the same way. Nausea is my primary symptom and I can't think of anything that could be worse. Are you going to Mayo Arizona, or Mayo Rochester? I have been to both. Mayo Arizona, it is open invitation. You basically go there and are seen by an intake Dr. who sets you up with specialists. They didn't seem to know much about POTS. I didn't come away with anything that helped. Mayo Rochester is by invitation and they will have you set up for appts ahead of time (they will ask you to mail your med recs). When you get your schedule, the visits can span over a week or more. They have patient advocates at each of the specialty areas and they can help you try and get your appts moved in closer. Sometimes you have to sit by their desk and wait for cancellations. Its worth it though if you are on a budget. They will re-run nearly every test. Redo the tilt table etc. There is an additional test called the "purple test" they will likely run. They dust your naked body with gold dust (you will look like an oscar!) and then put you in a covered tube thing. They increase the temperature in the tube to over 100 degrees and a camera inside the tube takes a computer image (not detailed enough to show you naked) of the gold dust. As you sweat, the dust will turn to purple. They measure the heat with the coverage of purple on your body and that determines your nerve damage. I eventually turned purple, but was shivering like crazy immediately. My feet remained totally gold. It was Awesome! That test will wipe you out. You will need TLC and some rest afterwards. Between the tests, the appts and waiting to move up your appts, there is not much time in the hotel. Definately take something to do like books, etc. A few years ago, there was a Barnes and Noble a short walk away. That helps alot. I did not come away with much- the star medication at the time was Mestinon. It didn't work on me. What did work was to increase my Florinef to .4 and add Clonidine. I have heard that Mestinon works for lots of people though. Mayo has done new research since then and I would not doubt if they had something to help you. The GI department didn't have much to offer, but that morning everyone was off their game because one of the docs was in a fatal car accident on the way to work that morning and they were very shaken. Well, I've been rambling enough. Mayo is a wonderful place. I am greatful to have gone. Let me know if I can tell you anything else. Kits

He's talking about forming neuropathways in response to stimuli- and extending it to situational physiology. He's suggesting that you have formed a neuro connection to a symptomatic feeling. He's not only suggesting that the symptomatic feeling does not tie to an actual acute or chronic disorder, but that you have received some reward for having a symptom (ie, meat powder). His logic suggests that it is instead he himself who is similar Pavlov's dog and that faced with a problem he is not intellectual capable of handling, he reacts with a cheap answer and is rewarded with a confused, red faced, or exiting patient. I was in your shoes very recently and I did not go back to that doctor. I can't waste time and energy with those who increase drama in my life. Either go back in charging, or walk away but don't let him put you in that box. Kits

I noticed improvement in year 4 and then not since then. POTS is better for me though because I believe I am on the right combo of meds, at the right amount and at the right time of day. I think POTS getting better is a combination of things. I think I am getting better at being a POTS patient. For example, I am extremely regimented. I take meds at same time, hit the hay at same time, exercise at the exact same time a day, etc. I know when I can eat healthy stuff. I know when I need sodium foods. I know when to stop, I know when to push myself. I know when to leave the office. I know when I have to cancel an activity and when I do- I'm no longer hard on myself. I don't apologize too much and I don't volunteer too much. I'm having an easier time mentally. I'm discovering how to stand up for myself. I figure because I've stopped medically improving, I need to start improving what I do. It's encouraging to hear these success stories here. We know the real success stories are the ones we are not hearing- the people who are no longer posting because they are no longer struggling. We have all the reason in the world to have all the hope in the world. Kits

Yep, the elevation is a big deal. Before diagnosed, one of my most miserable nights was at Deer Valley in a $400 room at a corporate retreat. I left the next AM for the ER and the winding down the mountain was very special. I live at a higher elevation than Salt Lake, it is equiv to Park City. When I go on vacation to the coast I definately feel better. If my doctor moved there- I would follow like a stalker!!! It WOULD be nice to get ham fried rice at 2 am. I would enjoy that.

I only had dizziness because of taking ritalin. Then, I swapped it for Adderall and the dizziness went away. So- I don't know, sorry. Kits

Thank You!!! You are so smart. Kits

Oooooo! That is the funnest part! Getting to shop for a new outfit and then pulling out all the foofoo Victoria's Secret stuff and having smokey eyes. Picking out the nail polish and the date mints and the "hair up- or down?" opinion poll that I text to all my friends at the last minute. Love IT! Best part of being a girl!!!

I could get your dates after you screen them for me!! That would work out just fine!! I would love to live in NY. I seriously don't know how you do it though. It seems like it would be hard to live there if you didn't feel well. When I was there I had to stop at every single Starbucks for coffee! We could go to clubs and when someone asked us what sweet thing we were shooting up we could answer "Zofran" in unison. I could just see it! I live in Utah where everyone gets married by age 12. I actually have friends from high school that are Facebooking me pictures of their grandkids. I'm totally freaked out right now. All I can say is maybe I will wait to get married in the next life where there is a better selection.....I hear those Carpathians were HOT!!! Kits

I laughed so hard, I couldn't breathe! You are fantastic! From the sound of things, this poor one may have to send 1 word per sheet! That would be special...

I email my doctor. Last time I left a message with the guard dogs, they called me back and said that no, he could not perform my pap smear. EW! He is my cousin! AND my initial message was that when asked about childhood illnesses, we forgot to tell him that I was a DES baby. I felt so violated just getting that mix up back! The ONLY way to have things communicated straight is by direct communication like fax or email. I keep the emails short and to the point. I always assume that they are being read by the entire office. Also, I don't ever expect him to make any changes to meds or suggest others without sitting in front of him and talking face to face. He doesn't have a PA or FNP, but if he did I would avoid them. If 4 years of medical school did not cover POTS, then 2 years of PA or NP school doesn't. Before I discovered the email he gave me his cell phone number, but I would only use it in POTS emergency. It also worked well. Some doctors are open to it, most are not though. I think it was because I was family. Before he gave me the cell phone number, I would write exactly what I needed down and take it in person to the office. That sounds like a pain, but I could not risk that he would get the wrong message (like above). If your doctor consistently gets the message that you are a whiner, you've lost them for good. The problem is, you may not be whining at all. It could be 100% the guard dogs misunderstanding what you are saying. Doctor communications are a mine field that you have to navigate carefully. I've worked in medical departments and patients start to get a reputation. That reputation can really interfere with your care. When in doubt- set an appt. I never expect them to solve anything free. I hope this helps. This problem is probably more common among POTS patients than we realize. It's because you are so complicated (just teasing you) Kits

How does it help POTS if its a vasodilator? Wouldn't that shoot POTS all to heck? Does it work because it dilates, then the body over-reacts and vaso constricts past the base point? Don't get it. Kits

You might have it then. The mapping is my strongest. When you picture a person age 10, do you imagine age 10 in relation to all the other numbers, like are you seeing 10 in the total line up? Now imagine age 30. Are you seeing the total line up of the ages 1-30 or beyond? Where is the person age 10 in relation to the person age 30? Okay, when you imagine age 100, where do they sit? Can you see all the numbers 1-100 in your mind and here is the most important question- is this a shape? I'm pretty freaked out about not everyone seeing this in a map. My age map runs from south to north, back to south, back to north, etc by decade of age. Except, it does not turn south until 30. After 100, it turns west those numbers go to 900 (Moses). My age map is vastly different than my money numbers map. I also have a different map for the months of the year. The money numbers map is more organized, but more complex. I guess this explains why the only math that I can do is sale rack math! Despite the maps, I have an almost severe learning deficit in algebra but I can calculate like lightening. My last few brain MRIs have said that my pariental region is shrinking quicker than it should. The only "beautiful mind" experience I've had is that when I worked in genetic research, we would have the conference room tables full of pedigree charts with kindred numbers all in micro font. Thousands of people, hundreds and hundreds of kindreds. When they said they needed to find a certain kindred number, I could locate it within seconds and the person number simultaneously. I would just scan the table and my eyes would focus on their own right on the numbers. I just thought it was a cool party trick. Didn't really think it was an official thing that had a name. I was hoping that more of us had this. I am always hoping to find out what has caused my POTS. Kits

Oh also, if this person is so intent on setting you up, why doesn't he just throw a party? Then you can talk to whomever and escape if you want to. He can invite multiple "potentials", then you can see if you hit it off with anyone. You can take your friends for support and its not such a one on one intense situation. If they don't show up to even that then they are just lame anyway. Kits

Oh boy. Where do I start? I feel the same way you do. I don't have any good advice, except don't worry about your place being a wreck. Just think the place is off limits until you have known the person for a few months. That is safest anyway. Now, with that out of your way- what is the real reason? Just POTS? Anything else? One day I feel like I want to meet someone (although I cannot name a single single man I know- all are married), the next day I think that I am way to complex with POTS and I am fine being single as long as I can count of a roof over my head and my recliner to welcome me at night. Then the next day.... Well anyway, at least that ****** Valentines freekin' WEEK is over!! My last date was a blind date. I came away SO GLAD that I was not married to that dork, but even more glad that despite POTS, I did it. The guy was not for me, but the fact that I went on a date made me glow for months. You may just want to go on these dates provided that you follow all the safety rules (does not pick you up at your house, has only your phone number, make sure you tell someone where you are going, lots of people around- lunch is a good idea, be vague about your specific work place). You may not feel your best, or even look your best but how will the date make you feel? Imagine yourself just home from the date, imagine that it was a dork and you are exhausted. Would you be happy? Would you feel you had become the new you and had broken ground that had previously been swallowed up by the POTS monster? If you say yes, you must go on these dates! POTS is a lonely disease. You deserve to have some fun. You are no less than anyone else. I think you should go to Target and buy something fun or kicky for yourself for every first date you go on. It may get you through some dull conversation to think that you have a great book and some chocolate waiting at home for you! Kits

I have been taking Clonidine for about a year now. The FDA approved use is to lower blood pressure. That said, if you're blood pressure is already low or normal- I don't think it does anything. I have not noticed low blood pressure with it. My Midodrine use has actually decreased. It does something unique in POTS patients. I don't understand it- but my brilliant doctor suddenly came up with it. He is constantly reading stuff about POTS. I know. I am really blessed. What it does for me is that it has decreased my morning nausea by about 80%. Wham Bam- very next day. It was incredible. Whatever it does for POTS- I'm a big fan. Anyhow, I take 2 pills at night. The stuff will knock you out cold when you first go on it. When I first got it from the pharmacy, I knocked back 2 pills. Big mistake- felt like I was under anesthesia. The sleepy effect wears off about a few months of use. There is a patch that you can get for constant dosing, but unless you are unemployed with no plans to drive a car I am not sure if I would recommend that. I don't know if it is addictive. I'm not really worried about that. I do know that you cannot stop it immediately. It must be tapered. The drug advisory says that stopping it immediately could be life threatening. Once, I forgot to take my nighttime pills and the next day I was sick and had the worst headache. I keep a stash of clonidine in my purse just in case of terrorism or whatever. I keep enough to taper down on and then I don't worry about it and enjoy the benefits of the medication. Besides Florinef, I credit it for giving me the ability to get to work without crying my way there each morning. It has really helped me be less miserable with POTS. Kits

I was just speaking with my mother and we were talking about baby names. I told her that I like my name because it is the right colors and I was shocked when she had no idea what I was talking about. We then started talking about numbers and she had said that to her, numbers do not have a map. So I do the whole google thing to see if I was schizo, and I came across a couple articles about a thing called Synesthesia. Synesthesia is apparently an autustic-linked neurological gift where a person can see colors in taste, sounds, or words. They also make maps out of numbers. Depending on which article I viewed, it was either thought to be a higher form of intellect, or a form of brain damage (great.) My question is this: how many of us with POTS also have synesthesia? It means that there are connections between the senses that normally don't exist- senses, great- but how many of you are like me see colors exagerated when you get sick have to shut down all sensory things like sound to keep from having a full out panic attack? Kits

Would it be low blood pressure? Sometimes I see the lights flicker and dim when I've been standing too long. I know the tiny vessels in the eye are very sensitive to water and blood volume as well. Are you drinking plenty of water? Kits

I have tried nearly every BCP for painful endometriosis. I finally found one (aviane) that I could tolerate without additional nausea. My doc thinks I got POTS from Depo-provera. I always thought he was a little nuts, but at my wits end I stopped the BCP last week and have felt my POTS improve (significant improvement of morning symptoms). I am now willing to put up with nearly unbearable pain for lesser POTS symptoms. For me, the BCP made POTS worse. I would be careful. Kits

Just re-read my post. I don't mean to discourage you from trying work. I just want you to know that I empathize with you and I know that you are making the best decision for you. Hang in there, and lots of hugs Kits

Yes, people with POTS work. I went back to work after diagnosis because we were told that within 2 months, POTS would be healed, gone, done with. Right. Let me tell you from someone who works. It is far from ideal and frankly it is misery on wheels. Had I known that 6 years later I would still be struggling every day- I would have gone on disability straight away without question. Problem is- now I've documented that I can work and so disability is probably never ever within reach. Yes. POTS patients work. Some work full time, some also go to school, and raise children, fix dinner. But SHOULD POTS patients work- maybe not. It is dang hard. I liken it to having a chemo patient or a heart failure patient work. Yes, they can. They can work full time. But, the sacrifices are great and as we know-- POTS is a very individual thing. If the meds don't work on you- there is no possible way you can work. Time to find a new doctor. My doctor recently told me that some doctors know they can't cure POTS and so they don't want to be associated with it. They throw out the baby with the bath water: they dismiss POTS and in doing so, dismiss their patients entirely. Wish you were in Utah. You could share my doctor. He's fabulous. Kits

Just a warning. Mayo balance bills with full liability. This is what snagged me when I went to Rochester. That means that while most hospitals accept the insurance max amount and then issue your percentage of what you pay from the maximum allowable charge, Mayo issues your percentage from what they bill to the insurance company. For example. Hospital A bill comes to $5,000. They bill the insurance company and the ins company says that the maximum allowable charge for services is $4,000. The hospital accepts 80% of $4,000 from the ins company and then issues 20% of $4,000 as a bill to the patient. The copay is thus $800 What Mayo would do in this situation is accept 80% of $4,000 from the insurance company- then bill you for the 20% PLUS the $1,000. I asked them if they make any exceptions and they said that they never make exceptions. So- call your insurance company and know exactly what your preauthorization is for. Find out what you ins company generally pays of the submitted claims and then you will know what to plan on. Also, might be helpful but maybe not. We had a hard time getting from Minn to Rochester because of lightening closing the flights. Apparently happens alot. The affordable hotels were full and there were absolutely no rental cars. We were panicking. Luckily my brother the ace traveller was with us. If this happens to you, go out to the shuttles and have them radio in to their lobbies to get a hotel reservation. You will skip ahead of everyone on hold for rooms. If you get stuck without a rental car (have to drive into Roch instead of flying), call the U-haul locations. They have rental cars that go with the U-hauls and no one ever remembers that. They will rent those cars out. Just thought this might be helpful just in case. You don't want to miss your appt!!!

I was nearly kilt by the movie Cars. I feel bad because I either go to the fun movies and feel horrible or I go to the boring movies so that I can feel halfway normal afterwards. Plus, do you have a hard time smelling the popcorn and all and sitting that long? I just think the whole experience is difficult. My family likes to go to a stadium thing on the 4th of July. I dread it all year long!! Just think- if more people had POTS, the theatres would let you lay down and it would be projected on the ceiling! Also, there would be breaks and I'm pretty sure there would be free licorice ropes!! Kits