Kitsakatsa

I've always thought that I had the best doctor for POTS, because he was compassionate enough to listen. He has a closed practice now and I tried to get my brother in to see him because my brother has some scary symptoms. So the MA took the information, checked with him and he denied my brother as a patient. That would be fine, except that this doctor is my cousin. Now I feel like my doctor could care less about me as a patient because he doesn't care about my brother. I even asked if he could take my brother and I would step away as a patient, because I'm much more worried about my brother. They wouldn't do that though. Now, I just feel like its all personal and if he doesn't care then he'll probably fire me as a patient anyway and maybe he really stopped taking care of me years ago etc. I just don't know. I thought that I mattered as a patient, and I thought our family mattered. Should I stay or should I find another doctor?

I'm so sorry. It seems like you are saying that you've done a good and brave job of stashing everything for 12 years in a box at the top of the closet and just now it feels like the entire box will all contents have fallen on you. The baby thing is a very hard thing to think about. I think about it every day since I don't even have a husband yet etc. POTS does take away pieces of life. I hear you loud and clear. I wish I could say something that would help you. Its just very much not fair. Do you really think that you could not take care of a baby? I don't know if I could, but I don't know that I could not. I think if someone did not have to work outside of the home, and had someone to clean and shop for them, then they could sleep when the baby sleeps etc and be very careful etc. I don't know. Do you think it would be impossible even with the right help? There are some moms on this board- maybe they can give us insight...

I don't know. My doctor had a fit when he saw mine bunch at the ankle. I'm thinking that uneven compression can set you up for DVTs? We'd need a nurse to telll us.

Hello Kitty. That is the life I have after I do too much in a week. Its just me dozing like a cat with the cat. So, I'm trying a little experiment and in the 1 experience I've had it worked really well. So, I'm pretending that my 1 experience is really really scientific and that makes me happy. I'm in a biomedical core class and we are studying the nervous system. So, in our lecture I learned that how hypertonic solution (sodium) helps the brain function. The nerves function in a series of polarity (flipping) between positive and negative environments and sodium in, potassium out etc. The higher sodium content in the blood makes the system just flip faster. So, I wanted to figure out how to prevent the crashes (like someone else said). I always take in tons of sodium when I'm sick by infusion, but forget about sodium when I feel well. I wanted to go out to a resort club on Halloween night with my friends, so I took in tons of sodium the day of and the day before. I thought if I kept the sodium high in my blood while I was overextending myself, then the nerve transmission speed would keep flipping faster and the body would handle the capacity of the activity in an efficient way instead of handling it in the POTS way of flattening me for 2 days. The interesting thing was, the club was hot- which would be a drawback- and I forgot my med hose (maybe on purpose). The next day, when I would normally be sick and miserable, I felt tired but not in a POTS way necessarily. My nausea was at a minimum and the only thing was extremely sore muscles. I had actually bounced around enough to have sore muscles for a week- but not an increase in POTS symptoms. So, maybe this means something, and maybe it doesn't. But, I've never had an experience like this since having POTS and I'm definately going to salt load again when I want to do something - like clean the house etc. From what I can remember, my sodium load was around 6,000-7,000 mg those two days (lots of pickles, commercial soup and turkey jerky). This might not be safe for everyone though. It was a pretty compelling experience.

Welcome to Glamour!! (You have to say it like its the 1950's) Being fitted is the only way to go. Otherwise you can end up with tight bunching and from what I understand, that is dangerous! The pair will cost around $100, or custom for $150. My custom ones beat the others 10 to 1. Home health is the source for these and they usually have a few different types and colors (I have an old pair that I'm going to try dying dark blue this weekend. I know...WILD!!) Also, if you have problems with elastic allergy like I do and your thighs become raw, or abraised or whatever- Target has some WONDERFUL exercise shorts that can be worn either over or as underwear. I get the mens thin and tight black ones that go down to just above the knee. (you know- the ones that you see on the side of the road on the bicyclists with the extremely tight and very distracting pdonkadonks?) And- they are fabulous because if you are self secure, or live alone- they are great to sleep in during the summer. You have to get these relatively tight though so that they won't bunch up under the hose. Make it work though, because hose can be a great improvement. Like I said, Welcome to Glamour!!!

You sound Ok to me. I love those things. I'm way older than you are and I just got wrapped up in Hannah Montana (although some of the pleasure is to make fun). I just cleaned out the garage and found my Inspector Gadget toy (it took 10 happy meals to get all the parts) that squirts water and a Mr. Potato head. The first thing I thought of was how great they would look in my office. You still are a kid- you should be a kid and dogs are GREAT therapy!!! (as is terrorizing cats, I get them all mad and then let them rip up a whole roll of TP just for fun). If you were immature, you wouldn't be worried right? I think this says that you need fun things to release all of your tension. POTS is hard and terrible. An Easy Bake Oven is in your future!!!

I am so thankful for the responses posted on this topic! The last topic made me laugh because I tried to do a Rachel Ray meal, and keep up with her and nearly had to lay on the kitchen floor! We need "3 Minute Meals"! Well, I think I'm going to see where I can make some changes, but it sounds like I shouldn't get too wrapped up in an idea that I can "cure myself by Monday!" I could use the weight loss though. I don't think I need to explain to many how the nausea diets (white carbs) mixed with the nausea exercise plan (zero) works!

It sounds like the conversations that I have with my brother when he tells me to just go off all medication. Brothers are like that. They want to fix you, and they feel bad when they can't. Living on one's own and relatively independently takes time, but should be a series of small and meaningful goals. I know how frustrating it can be, and at times how scary it is. The way I see it though, I have to take baby steps each day or I will end up in the same place for way too long. My full time + schoolwork and my own house life has only been possible through a series of very, very small steps. Everyone is different, but for me- I do two deliberate things: 1. I go to my limit each day and then go 10 minutes more. This can be laundry, running up and down the stairs for no reason, or going into a new store for no other reason than to keep yourself moving. Go to Home Depot and pick out your favorite paint chips. It doesn't matter, because the point is to keep your limitation level moving. 2. I tell myself that I'm not going to be young forever and as long as I'm sick anyway, I might as well go have fun with my friends and pretend that there's nothing wrong me and pay the price the next day. I call it my hangover saturday or sunday even though I don't drink. I plan for it. No-one would have ever guessed that the girl with the fishnet tights and the metallic outfit New Year's Eve at the Voodoo Lounge in Las Vegas ever had POTS!!!! You must plan your success and roll with the punches. Only you can determine the next crazy step that you will take to get your life back. The most important thing is to make sure they are moving you in a good direction. I'm sorry to say, but writing and puzzles are good for the mind and not so good for the calf muscles. Best of luck in your planning!

I just like to make fun of the shake, because that is the reason why the old me would never ever even consider a change in the food I eat. Any vegetable in a liquid form scared me to pieces (besides V8, but that is not pretending to be a shake (which is an ice cream mound-period and not slim fast)). And, I would use that a reason to not try and eat healthier. So, I put that aside in the beginning and I would really like some honest answers on if whole foods have helped people. I'm really worried about how much it would cost. I guess if you eat less it costs less- right? I want to find a way to do it so that it makes an impact (not just a whole food here and there), but I don't want to create a financial or energy meltdown. How do you guys balance this? Nausea is a factor too-since all I feel like eating are white starches. Has anyone found a substitute for saltines?

Agreed. Yeah. Reminiscent of the Saturday Night Live Bass-o-matic! I wouldn't even want to clean out the blender after that- let alone drink it. I'd vote for throwing the blender away... or selling the house that contained the blender. There are other things like Almond Butter and stuff that I've heard of that sound pretty good. I don't know. Maybe kind of the like the Mehmet Oz stuff....

I'm the Financial Manager of a Trauma I Hospital Operating Room and when the Clinical Manager isn't around, I'm unfortunately the step up. This is a great post. I love you guys (no I'm not drunk). I finished the last half of my MBA while having this condition. It can be done- with the right support system. I agree that knowing physicians personally leads to diagnosis. I used my network to get care and I thought that I had Addison's, which made the right people perk up and listen. I should be getting paid tons more for my education, but I figure that the real benefits for working in a hospital are the ones like this and I wouldn't trade them for more money. Feet up? I should try that. Do you have an actual ottoman under your desk? I'd like the George Costanza set up with the bed and alarm clock- I'm working towards that.

So, has anyone seen the Discovery Health Series "Crazy Sexy Cancer"? Well, the patient on there said that she really loves whole foods because she feels so much better than she did before she started paying attention to her diet. That looked intriguing because I wonder sometimes if my system could heal faster if the foods I eat would work with the system and not take away strength to digest them and do it so poorly with the gastorparesis etc. I don't think you have to be vegetarian or eat organic tofu dishes to do this. She did make a kale shake or whatever that looked like something no POTS patient could ever get to their lips- but I wonder if there is something about the mix of foods and vitamins that can speed healing. Is there anyone who has tried this or currently eats this way. The downside would be the energy that it takes to shop and eat this way (no McD's) and the financial bit of course where anything healthy costs more. How far has anyone taken this? Thanks, Kits

I hope this isn't a violation of copyright- someone halt me if it is. I have the entire article from the abstract "Reduced Stroke Volume during exercise in Postural Tachycardia Syndrome". It was difficult to obtain and I had to go through a network of libraries. I thought maybe it might be useful to those who are trying to work through exercise issues just like myself. Anyway, if you email me- I can send the PDF to you. It is 33 pages. My email is cajacob1@ihc.com

Oh yeah, I forgot- Florinef. That helps you retain the salt as well.

Thats the salt theory. The way to higher blood volume is higher water intake. However, we are professional pee'ers. So, the salt helps the body to retain the fluid instead of shedding it. If you have POTS+ actual low volume, you have 2 problems. You are a quart low and your body thinks you are two quarts low. So, with a transfusion, your body would still think you are a quart low. I get 3% saline infusions, but then its only a temporary fix. Not to make light of it, but I once discussed vampires with my neurologist and we theorized that Dracula had pots because he loved to lay down- hated the sunlight, was pale and needed an increase in blood volume. I think he may be just misunderstood! (although, what's with the cape- I don't know)

I was on the BRAT diet for well over a year (Bread, Rice, Applesauce, Toast) until my health plan decided to sponsor a dietician to work with me. I would highly recommend going through the process to get this approved, appeal etc. I have a hard time finding food appealing and then when the nausea wanes, I eat like a rhino! Neither is healthy. A dietician was able to break down everything for me and even though I still run away from meat (too heavy!), my kitchen has more than just saltines now. This is a tricky thing that few people understand. Lettuce, apples- anything like that can be just hard to get down and stay down. Even multi-vits can be hard on the stomach. So- a dietician may be a phenomenal help to you also. The other thing, it sounds like you are saying, is that you have BP problem associated with eating? This is post-prandial hypotension. There's been quite a bit of research in this field and this is a cardinal POTS symptom. From what I can remember, the only recommendation is to eat small meals and lie down after eating if you have the opportunity (hard to do at work, but at home- hey you get out of doing the dishes!!) Maybe others can remember more about this- but basically the blood draines out of your head and goes to your stomach. Even though it sounds opposite- I try and walk after eating. It seems to help the urge to just fall over! Hope this helps!

I consider this area a sort of battlefield because I and it sounds like so many others come back from it at the end of the day with frustration and sometimes a little injured! Here's how I try and handle it: #1 people: Brace yourself for this category. They are the most likely to distance themselves if they don't understand. With this group, I talk about the illness if they ask and then try not to be hurt if they never ask. I use this group to get away from the illness- that is what I tell myself. Anyway, I am pretty honest and this is the group that gets the plans cancelled sometimes, so they need to know that you are trying and you value them. #2 people: Is this the co-worker category? I generally tell them the title- then they laugh because it is so long. Then I tell them that it makes you feel like you have heat stroke and stomach flu every day (or pick your own symptoms/words), but everybody pretty much knows what that feels like. Then I tell them of something that I'm thankful for (like I have a good doctor, great parents etc) and so they know you are trying to be brave. I never tell them more than 2 symptoms. They generally have a bunch of questions and I answer those honestly- but these people for me are my daily saviors (co-workers) and so I treat them carefully. #3 people: Same as the #2 people- these are like neighbors right? Anyway, I try and build a support network by letting people know without overwhelming them. Its a tricky balance.

Hey! Maybe good news!!! I spoke with the pharmacist today @ Target and he said that according to his computer, it is up for generic in November OF THIS YEAR!!!! I am so excited. Generics are substantially cheaper for me and this will be an absolute turn over for my finances. I might be able to take it as prescribed now! There is a new hybrid of the drug "Nuvagil" that will be released from the company when the patent for Provigil expires. This hybrid is a combination of Modafinil and another drug. Perhaps the hybrid might work for those who struggle or find limited benefit from the Modafinil form. I don't know much about it, but I think it would be something to google (or try "www.blackle.com" if you have light sensitivity like I do). Mayo clinic just had a news release today that Provigil has been found beneficial in some patients with Bipolar disorder in the depressive swing. I just think this is a miracle drug and I am so glad that I have it in my arsenal. But I agree, never ever take it after noon!

My dear neurologist just retired, but he was a brilliant man and the thing my mother and I loved about him is that he would giggle like a girl. There are two particularly funny times when he just couldn't contain himself. My mother and I used to make fun of the dreary details of POTS and all three of us would be giggling fast. The first time was when I tried explaining how hideous the foods were that held the dye for gastric emptying test. There was the time with the eggs, then the worst time with the generic canned beef stew. That time was after I was hospitalized because I hadn't eaten much of anything for 2 months. Just describing the eggs and the state of the beef stew had us rolling on the ground, plus the whole experience was void because we later found 1 of the electrodes on the floor! The second time was when he told me to lay down for 20 min halfway during the work day and I tried explaining to him that laying anywhere near the floor in a hospital invokes all sorts of caos and is likely to result in at least 1 IV, a risk of electroshocks and my blouse being ripped off, not in a good way. Also, with my vital signs, I would probably qualify for at least 2 colors of code called overhead at any given moment. He was giggling so hard he couldn't breathe. I really am going to miss him!

I love, love, love Provigil. My insurance covers all but $45 per month. I've been trying to find out when the drug goes to Generic. From the date of FDA approval, it looks like the patent should be up in 2008. However, I found some stuff that said that it was actually up in 2006 when the company started legal proceedings against a company who planned on formulating the first generic. According to the judgement, it gave the company 5 more years before a generic version would be allowed to hit the market. This pretty much popped my balloon. I can't really afford the co-pay and so I have to try and stretch the pills like cutting them in half and not taking them on weekends. I was really hoping that the generic would come along soon!

I have both, but this discussion is puzzling because I was told that the CPAP was contraindicated for use with patients who have problems with blood volume. I've never researched it for myself, but now that your replies are here- I think I had better! The machine was hard to tolerate, but I'd love to try it again. Afterall, what about our lives is easy to tolerate anyway?!

Like the two previous respondents have said, it is a big decision. You have to decide which line you will have and then have to have the finances and the clinical things worked out to support it. I started with a picc line and moved to a port a cath. I am one who has deep and small veins. After being on 3% sodium for two years, the fluid had "burned" my veins out and the IV would blow out after a few minutes of the fluid. In one day at the IV center I had 14 sticks, and blew 4 IVs. The picc line disappeared because the adhesives gave me deep flesh burns. So, that's when I adopted the port a cath. I'm one who has to have regular access to 3% because I have to work and 3% keeps me upright. After this drama, the fluid part has come rather easily. I get these delivered through home health. It is expensive, but not as expensive as an ER visit or the IV center visits. I inject Zofran in them and get high. It is simply much better to be home and in your own recliner for fluid. There are some very regimented steps that you have to take so that you don't infect or hurt yourself, but they are easy and your home health RX comes with patient education and usually someone that you can call. For me, at least, it has been beneficial. It is a decision that you have to go into realizing that its not the cure, but a pathway that has benefits and risks. Kits

Tired and Wired. I had a sensation that I could only describe as "static". It is like when you leave the TV on after the networks go off. If my body were a TV, that is what I feel like. Now, I think I can describe it as adrenalin sickness. If that is not an actual illness, then I just made it one. It is the feeling that I have when I cannot stay lying or seated for more than 10 seconds and I am too weak to stand. It often results in me lying, popping up to sit, falling back to lay, repeat 10,000 times. I really wish that I could find a better way to describe it.

Hello All. Do we have any members with POTS and Addison's Disease or complications with Adrenal Gland hormone/steroid balance? I had a recent illness that I'm still feeling quite under from. My physician suggested Medrol which helps to replace the lost Glucocortisol balance. My symptoms were pretty close to Adrenal insufficiency. While on the Medrol, I felt great then as it tapered- I felt worse until it resulted in a weekend of sleeping 16 hours a day and the onset of bronchits (something I get when worn down to the ground). It leaves me to wonder if Adrenal problems are common among us, or if we can uncommonly find ourselves in this unfamiliar territory when we get worn out. Does anyone have experiences like this? K

In the US, it is the "Industrial Commission". They set up mediation sessions between you and your employee. These work fine some of the time, but I would advise if you do this to make sure (by role or otherwise) that your employer does not bring an attorney with. You don't want to walk into a situation where they are represented and you are not. My advice is to look at your FMLA leave and the secret shopper as two different situations. If your employer has made remarks about your FMLA leave, you can simply remind them that those remarks are not fair and that you are participating in part of the benefits (although unpaid) that your employer offers its employers. You can shame your boss by acting more professional than they. On the evaluation situation: I would sit with your boss and dissect the evaluation. What are the average scores given by this particular shopper in reference to the others? Where you the first to be evaluated? Is there a criteria sheet and can you have access to that information? How are shoppers hired/background/etc- how do they balance out their scores to tabulate a fair score etc (throw out highest and lowest?). How did your evaluation fall in the statistics of the company? If your employer cannot answer these questions, then I would launch into a calm discussion about fair evaluation and mutual respect. If this is a shopper that gets their kicks off of ditching on other women, then you don't want to over-react. If this is only happening to you- it might be just a way to discourage you and you shouldn't let it affect you, but I would ask the questions and have the discussion.