Kitsakatsa

My mind is just spinning and I am getting so worked up that now I cannot sleep. I've been awake for 45 hours because of a wicked insomnia/stimulant cycle and I just cannot get over the fact that I am constantly battling the secretaries from my two doctor's offices. I am so frustrated that I just want to crumple up and cry. I have been calling and waiting for 3 weeks to get a message to my neurologist. Every time I call she says that she cannot remember what my message was about. Then, the internal med's secretary cannot seem to find the dictated letter- dictated over a week ago that I need to have the insurance cover my Scottsdale visit. And- the Scottsdale visit is over a year old because the secretary there processed it wrong!! This is just this week- every week something different!!! Isn't is sad that in America we have the most accessible healthcare and we are stopped at the front desk. All of the training, education, life-long committments and research towards the medical care that we have today and the whole thing is halted because a secretary at the front desk will not answer her phone, loses messages or just plain has an attitude. I have been a secretary in an extremely busy medical clinic before. There is no excuse for this inadequacy!! It has even gotten to the point with my internal med that the sec is going out of her way to make my life worse. She snickers and rolls her eyes whenever I set an appointment, and purposely (I think) miscommunicates messages to the doctor (I called about a hormone level, she told him that I wanted a pap smear- what?!!) I can't even talk to her on the phone- she stands over the receptionist and tells her "say this to her.. well, tell her this"? AAARGGG! I just want to either strangle the secretaries or just roll up in a ball and give up. What am I trying to get everything in order for to go to Mayo anyway- there will just be more secretaries there!!! Thank you for letting me vent. This has apparently been spinning around in me for a long time and now I feel very emotional about it. I don't know what to do. I've complained, faced them head on and the more I try to work with them, the more they seem to enjoy messing up my files, messages and thus life!

Jobst in "high-fashion" (no kidding, right from the box) light beige 30-40. I get the maternity ones so that my ribs aren't mashed in from sitting all day at work. It's actually enough compression for me that they are effective without being uncomfortable. Too bad they don't make "Spanx" ones with sandle toes. The reinforced heels are really attractive too!

My intial 35 pd loss was due to deconditioning and the inability to eat anything but rice pudding.

I think it is the fight to be taken seriously. It is what we all have been through...ER and Doc visits without much help. When people tell me I look good (and I feel so horrible) I say "thanks! I'm upright and upright is good!"

The recent post about arrhythmias is just a little spooky because there was so much talk about PVCs. My questions: 1.Did you have a history of PVCs directly before POTS symptoms onset/diagnosis/etc? (people commonly have them, but I am talking about the kind that are actually bothersome and noticeable) 2. Did you notice that when you were sick, your PVCs were more prevelent/pronounced? 3. Have your PVCs continued with the same pattern throughout your POTS illness? 4. Did the onset of PVCs correllate with anything in your life? I will start with my own: 1. I had PVCs for 3 years directly before onset of POTS 2. An illness would put me in a documented (by halter monitor) pattern for at least 5 days straight. 3. My PVCs have decreased 4. Myself and 5 other nurses experienced onset the same week while working in a burn unit and caring for a pseudomonus patient. Do you see my concern? I am not trying to play Nancy Drew, it is just that so many of us (from the other post) seem to have them and so many of us work in the healthcare field. I don't know. Maybe I just need to cool it and go find some chocolate!!

I would like to lose some weight. I have tried exercise, but I am so sick afterwards and my BP the next day bottoms out. So, I joined Weight Watchers online to try and get control of my eating. But, because of nausea I can only handle BRAT diet foods (bread, rice, applesauce, toast) etc. I can't really get veggies or meats past my lips!! Has anyone found a way to handle this, eat what will make you feel okay and still lose weight? I lost 35 pounds initially with POTS, but have since regained my appetite. How does everyone else balance their nutrition when only a few foods even look appetizing?

I get the worst digs from our golden retriever. She begs at everyone at Sunday dinner, and then walks around me to get to the next person... she thinks I'm a vegetarian!!! I haven't been able to eat meat for a long time and she just totally gives me the cold shoulder. She has no time to waste waiting for the broccolli from the POTS plate!!! The best part is that my brother and I are always competing for everything. Once he beat me up a hill and I said "oh yeah- big man! Beats a pots patient up a hill in the sun- big man!! My mom just layed in on him for an hour about how I am "purple" (legs) and not to taunt me into a race again- it was hillarious! He had to buy me lunch...it was great- I got the lobster!!!

Nausea is my major symptom. I think it is always a good idea to have a nausea thread going in case someone finds something new. I usually only eat at night, but that makes the nausea worse for the next day. I know I'm in a cycle, but I cannot seem to break it. Nausea meds just don't work! It is so frustrating!!! When I was undiagnosed, super sick and hadn't kept anything down for a long time, and with only Zofran an ER doctor told me to seek mental help and eat lower fat foods. When I explained that I had lost 40 pounds in the last 6 weeks, he said "when maybe try eating jello- but get the fat free kind"!!!! What the?! Anyway, I don't know why I thought of that. Its just that there is little help out there. At first, I was so heartbroken to see how many people on this board were nauseated and sick just like me, but now I find that it is truly a support system and that no one needs to face this alone. I think that helps when I'm nauseated so badly, and I hope that it will help you too!

Love, Love, Love it! It is the military "keep awake" pill for jet fighters- did you know that? It is my main med now since Midodrine makes me nauseated and the betas give me insta-bronchitis. I think that it has made a huge difference in my treatment and I can layer it with Methylphenidate and Coffee without any effects. I think that it also has Ativan-like properties in it. I feel like it pulls me from the cognitive loss that I've experienced with POTS. My doc said "why don't you try this, everyone is taking it.. all the cool kids" HA! It just gives me a huge laugh everytime I think of it!

I am so glad that someone is posting this topic because I am so EEERRRAR! ticked at those comments. People tell me all the time that I look too good to be sick. What am I supposed to look like? Baggy sweats and hay in my hair?! My doc said it to me once because he went to check my ankles for swelling and I had on red fish net stockings (this was before the medical hose revolution of Feb 05). Just because I feel miserable doesn't mean my socks have to be miserable too! I know that people are trying to be nice. I stole the line off one of the newsletters and I say that if I acted how I felt, it would be a miserable life for me and everyone else and that I just look okay because I am trying to have a positive attitude. That pretty much works. Then when people ask what I have, I say that it is a failure of the autonomic system to do its job. Regulate pulse, blood pressure and when I stand- blood does not travel well to my head. They are usually at that point still trying to figure out the word "autonomic" and look like blood is not travelling well to their head either. Then I say- it feels like you have food poisoning and heat stroke all of the time. Then I get the "ahhhs" and they understand. Also, then I explain that that is why I'm always in a ponytail- because I can't lift my arms to do my hair. Then, they conclude that, in actuality, I really do look a little under the weather. Its a struggle. People don't realize that at any moment I want to throwup/die/faint and running around complaining about it and looking like **** is just so out of the point by now!

Sally, You asked about my nausea medications. I take Injectible Zofran 8mg-10mg 3 times a day (picc line), Compazine, Tigan and Marinol. My nausea breaks through all of these, but the 3% IV solution helps the nausea medications to work. When its bad I take two 500 ml bags a day. I've found that you have to take the Zofran continuously for it to work and the only thing that I can hold on my stomach is carbs. So- I've been carb queen for a year and a half. I haven't gained weight because I eat very little, but I haven't lost because I'm at work or down in bed. I really get the sense though, that the nausea meds are not working with the part of the brain that is communicating the nausea. Do you guys think that is so?

I work full time as a Business Manager of a clinical area in a hospital, but it is very hard. This is the formula that has worked for me: 4:00 am Wake up and take all nausea/stimulant meds and 3% hypertonic solution via picc line. 7:00 am Coffee to add to stimulants and saltines 9:00 am Go to Work/take more stimulant meds 12:00 pm Take more nausea meds and try to eat 5:00 pm Home from work and directly to bed for nap 6:00 pm start 3% hypertonic solution/last dose of nausea meds/dinner 7:00 pm Room Temp shower 8:00 pm Bed I found that I feel horrid during the day and much better late afternoon-night, so I get up early now to trick my body into thinking that I have a 3-11 job. It works!! I think the ability to work has been from my Angel Doctor and the dedication to stick to the schedule no matter what. For me- being able to work is ALL about regimen. Hope this helps. Working and having POTS is fierce and nearly impossible. I just have to get through it day-by-day and thank the heavens that I don't have a highly physical job!

We are pricing them now for my visit. On Travelocity, you can get round trip flights combined with a Mayo-esque hotel in a package deal. It looks like the standard is 5 nights with additional nights available- $600-$700 for the flights and the week. Not too bad! There are three hotels to choose from and the Radisson is among them. Good Luck!

My costs from Scottsdale were about $5000. Unfortunately, they stuck me with Cardiology and that was not a huge help. I've been accepted as a patient of Dr. Low's, but I am waiting for a date. When I called my insurance company, they offered some great advice to increase coverage. They said to have the scheduling secretary call on everything that Mayo performs and get a pre-authorization. That way, Mayo will have a harder time balance billing you (difference between accepted and billed charges). Now, the hard part- how can you get secretaries to actually do it?! Also, Dr. Low and the Mayo clinic belong to a network called "Beech Street" that many insurance companies cover in their swing out policies. Hope this helps. I hope that my day comes soon and that I will be able to post a success story as well.

Love it! I want to change my middle name to Florinef!!

The best thing that helped me in my MBA degree and getting through it with POTS was to have a laptop. Its been tons easier for me to think (and get blood to my brain) when writing a paper if I'm in a recliner instead of a desk with my feet down. Also, if she had to go to a computer lab with all the bad stuff- lines, floro lighting, people, smells etc. that may cause her to sink in a hurry. Hope this helps-

I've been cared for by a Cardiologist, Neurologist and Internal Med doctor. The Cardiologist is no longer in the loop (because he's an idiot) The Neurologist has the most systematic knowledge and The Internal Med doctor is a Type A who is the go-getter of the most recent knowledge known to man. Just goes to show, you may not need the 'right" one if you've got a good one! They still constantly drive me crazy though- they get a hold of a new med and I'm their guinny (can't spell) pig/hobby/scout project/etc.

Yes and Yes. For me the chapped lips have been due to constantly eating salty things, the florinef has caused my breakouts. I agree that Kiehl's makes a great lipbalm. No smell+taste=nausea. Plus, you can buy it online= no store lines! Same with the other brands- pretty sure.

Patti and Steph, you replied to my nausea question and said that you had seen strange things happening with hunger. My Internal Med doc (who is working constantly to understand POTS) came across an article somewhere in a Journal that put forth the theory that POTS is cause by severe damage to the hypothalamus. And, it all makes sense..chills, hunger, nausea, no sweating, abnormal sweat tests, regulation of body systems etc. The more I read about the hypothalamus, the more these symptoms seem to make sense!

Isn' t this so strange, because I have always tried to describe the onset of bad symptoms as a "sinking" feeling. It is so hard to describe the pots feeling to people. This is so great that finally there are people that understand!!! I refer to the feeling as "static" with my docs and they pretty well accept that. I also talk to my self and talk myself through even little things like getting in from the parking lot to work (do you guys do that?) When people ask me what Pots is and how it makes me feel, the best description that I have found and that makes people understand is this: You feel like you have heat stroke and food poisoning at the same time. That pretty much does it!!!

I had same sensation. Left leg (most dysautonomic leg according to sweat test), lightening strikes and then hard burning in smaller 4 toes. I asked my neuro doc. He is going to give Dr. Low a call. I'll post when I get an answer!

I remember it so well. I went to a cousin's wedding, ate horrible macaroni salad to make my aunt feel better. Went home exausted, woke up and went to an Eddie Bauer warehouse sale with friends, had lunch and went home to take a nap. Bam! Nausea non-stop. 6 months later the rest of the symptoms set in just as suddenly. We joked that I got it from Walmart, or the Eddie Bauer Sale (nerve damage from large amounts of ugly sweaters) and from the mac. Its taken so much of my life away, we have to joke a little. But anyway, the apartment that I lived in at the time had an extensive toxic mold problem. I had to live with my parents for a few months just to be cared for, then I moved closer to the hospital. I wish I would have had the mold tested though. We still wonder if there was a connection... Second part of the question: I do feel that I am getting better. I can watch TV, which is a big improvement, without emesis and I have been able to increase work to full-time. I've even joined a gym, although even the slightest exercise makes me so freakin' sick. The nausea, though has not decreased while other symptoms certainly have. I hope that everyone will improve and soon!

The doc at Mayo said this to me: "You need to know, this will go away". I find that amazing because I work in the medical field and docs never issue promises. I believe it, but I also believe that I have to work my hardest at taking my meds and sticking to a routine in order for my body to heal. No more Saturday shopping, no more Summer outside activities, Chrismas shopping (internet- all the way!) and we have lots of medical hose action going on here!

I had my first onset of symptoms in Aug of 2003 and had an abnormal GET in Nov of 2003. Do you have nausea? I had a normal GET in March 04, but we think that test was nil because the whole time one of the leads was stuck to the floor-- what the? I think it is Pots, but I've posted the same question just now. When I've felt better with Pots symptoms (I've named them "static"), the gastroparesis seems to be less severe. So it would seem that they are correllated...

I went to Mayo Scottsdale because it was faster and closer. The intake doc will do a general physical, set you up for testing and set you up for the appointments with the specialist. In Scottsdale's case- the specialty was Cardiology. They will confirm the diagnosis and make recommendations with instructions to come back if you are not feeling better. I fought with my insurance to have it covered - they agreed that I could not get care for such a rare disorder inside of the network. It took 2 days, cost $2000 in car, plane and hotel and came to about $5000 in medical. My recommendation is to get a room in the hotels on the mayo clinic campuses (all have them), get a note from your doc so that you can cruise through the airport in a wheelchair (no standing in the lines) and take ambien on the plane ride. I'm considering going to Rochester now. Has anyone had experience with that clinic?