deeplyset

I haven't tried this yet but I thought someone might think it helpful since Pedialyte can be so expensive. Homemade Pedialyte Recipe Serves 6 4 cups water 1/2 teaspoon baking soda 1/2 teaspoon salt 3 tablespoons sugar 1/2 packet unsweetened Kool-Aid (optional) Mix all until dissolved. Keep refrigerated and use within a couple of days. Like the store bought pedialyte, you can make them into popiscles too. Store bought pedialyte contain potassium. If your child can keep food down, try giving them some mashed banana. Rachel

I'm giving a speech on POTS this coming Tuesday and my goal is to bring awareness to our PLIGHT! I have heard it takes an average of 5-10 years to be diagnosed with POTS and I believe if doctors where more apt at identifying POTS and people had a greater understanding of the condition it would decreasing the suffering and helps us get treatment faster. I hope to gather stats for my speech as well as some interesting stories. I appreciate your help and if you have a suggestion on where to look for information please let me know! Rachel L. Blinn

Hey everyone! I haven't checked in a while but I wanted to let everyone know that I was in a car accident and after a head trauma I started experiencing my first POTS symptoms. It took two years for them to diagnose the POTS but through persistence, really good record keeping, and a wonderful lawyer I won my liability lawsuit for damages caused. I know there are many other people who have experienced similar stories and may or may not have pursue legal action against those who hit them but in case you are in that position and looking for HOPE, be encouraged, it worked out for me. Rachel

Can anyone give me information (or point me in the right direction) on what the difference between Vasovagal Syncope and POTS is???

One of the best things I took away for the Mayo Clinic was their Patient's Right points. It has helped me see how much I'm responsible for my care as they are and how to hold them responible. They are as follows: Patient Rights The right to have their pain managed The right to a quiet, restful, and healing environment The right to personal privacy The right to the confidentiality of their medical records The right and responsibility to express their concerns about any aspect of their care "The interest of the patient is the only interest to be considered." William O. Mayo The last one is what hit me the hardest. Not only did I have a right to do so but also a RESPONSIBILITY in expressing my care and concerns about treatments. We all know our bodies and a lot of us know information about POTS the doctors don't. We are an assest in our own treatment. The most critical force. Good luck. I'm sorry your going through all this. Rachel

I was diagnosed with MG when I was a child. I'm now symptom free and have been for about 10 years. When I was diagnosed with POTS they though my MG had returned and ran all kinds of tests. All negative. However, I use to experience the similar choaking with the POTS. It terrified me because of my experiences with MG. However, the type of coaking and difficulty swallowing was so different between the two disorders. My doctors said it was probably acid reflux upon examination. It has gone away and I haven't experienced it in a long time. I wouldn't hesitate getting checked out. It would be an EMG test usually for the MG. Any I'm sure it would alleviate a lot of stress. Droppy Eyelids and severe muscle weakness and fatigue that recovers with rest. Are classic MG symptoms. Although it's hard to tell the muscles and fatigue from the POTS symptoms that best way I can explain it is with MG it more of a slow decline, whereas the POTS is more sudden. GOOD LUCK and hang in there. Rachel

I get chronic hemiplegic migraines. That's what I was diagnosed with because of the assicoation with Paralysis. They are similar to stroke like symptoms. Also, I have loss if vision in one eye and slurred speech is a problem. Not to mention the all over weakness and confusion. And most of the above mentioned symtoms. I was hospitalized and on morphine to control them. They put me on Depokate and then Topamax to control them and this has been the BEST TYPE of control I have found pill wise. I was stillin a lot of pain with constant underlying headache about at a 7/8 level. But then I found out about Nevre blocks (simiplar to Trigger point injection but way less intense). In order to add to the treatment. So, every 4-6 weeks I get a Occipital Nerve Block injection on both the right and left lobes. It works instantly. And the injections take less than 5 minutes. It's a subcurtaneous injection of a local anestic (I get Marcain). It's none addictive and just numbs the Occipital Nerve (which runs from the back of the head, around the sides, and to the forehead). I also find my POTS symtoms way improve. It takes my pain down to a 2/3 level. I CAN'T tell you the difference it makes in my life!! When they start wearing off I feel like dying again. I don't know what I would do it I couldn't get these. They just make like so much more bearable. If I get a really bad mirgaine before my next shot I take imitrex. Here's a good site on hemiplegic migraines. http://headaches.about.com/od/migrainedise...ic_mig.htm?nl=1

I've had the same pain and nausea, sensitive to touch stronger on the right side--symptoms as discribed on other posts. And also an acidic taste in my mouth. When I was at the Mayo Clinic the did some test and found the bacteria in my stomach that causes ulcers. I was diagnoses with Chronic Gastritis (I think for the high levels of IBP that I had and have been taking). Also, because I have little ability to counter act stress (chemical imbalances) that makes it all worst. So, whenever I'm under high amounts of stress the pain worstens. All consistent with Gastritis. I take Protonix. It helps SO MUCH and out of the all the medications I take this is one of the most important because the amount of pain it saves me. I've tried several other medications to control the Gastritis and nothing is comparable for control. With all the other I was in so much pain still. Here are a couple of websites with the symptoms, etc.: http://seniorhealth.about.com/od/digestive...g/Gastritis.htm http://www.pennhealth.com/ency/article/000232.htm http://www.healthatoz.com/healthatoz/Atoz/ency/gastritis.jsp

I usually tell people that I have an autonomic nervous system disorder disorder called POTS and it affects all the things in your body that are suppose to function automatically (ie you don't think about it). Your heart rate, blood pressure, going to the bathroom, chemically. Most people's get that... And those that are insterested ask how the are not functioning right. I'll then tell them each one and how they affect the other.

I'm taking Midodrine right now and my doctor is just gave me a prescription for Labetalol (a type of beta blocker - from what I understand). He wants to try combination therapy with a beta blocker and the midodrine. I'm really nervous about it and have been sitting on the prescition as a result. I haven't been have the best time with the Midodrine so I'm nervous about adding the BB (labetalol) too... Rachel

Nina, Where did you get the fan and the coolsport vest??? Heat is such a killer for me and my garden has so suffered since it got hot. I basically don't go out and visit it at all until late and then only for short times. The fan sounds like a great idea. And the vest too. Rachel

Melissa, I hear you with that one, the waiting game . Patience is prefect perseverence. I'm excited to hear it all work out for you. Good luck. Rachel

Melissa, Wow. That's awesome. It's seems like you have your ducks in a row and that it's just matter of waiting it out... ??? Right? I'm so sorry. I hope it works out and that you can get it put though. I know it will help out a lot. I guess I've just been really blessed that I didn't have to go through all of that. It helps to talk to other people because it makes you count your blessings. Hopefully our conversation will be helpfully to others if nothing else. Go luck. And God be with you.

I don't know about you but this heat is so hard to cope with. I have a heck of a time adjusting to the temperature. Then when you do adjust to outside then go inside I feel like I'm going to go into shock because it so cold because of the air conditioning!!! It's so frustrating. Anyway. I could go on and on but I have found two amazing things that have seem to make me want to experince life outside again and even when it's warm inside so I'm not so miserable so I thought I would pass them along to everyone else... The first is a Cool Blast - Misty Mate (http://www.mistymate.com/coolblast.html). It is a mistier that you can fill with ice and cold water and pump (no batteries) and your off with a constant mist. It helps me stay cooled off especially when I can't be in the shade. You can get it online for $15 plus shipping a handling at this website or at wal-mart for $13.88 in the garden section. It has been worth every penny. It's like sense I don't really sweat it does it for me and the ocasionally brezze cools me down so well. I have my own personally sweat now! lol The other thing is an item i got at a framer's market it is a neckband filled with silcone crystals that you put in cold water or ice water (don't freeze) and it aborbs the water and then is just a cold neck band. But it's not all soggy and they come in cute styles and tie around your neck. It stays cool for up to 12 hours. This it the BEST it bascially regulates my temperature for me and stops me from really overheating! I don't leave the house without it now. And it helps my headache and nausea for getting so out of control when I would go outside. They charge $5 for them (on sale). But this could easily be made at home... If your not so crafy Misty mate makes something very simlar to these you can check out there website they call it there Cooling bandanna (http://www.mistymate.com/cooling-bandana.html) - They charge $17.99 for a 2 pack. THE one it have is worth every penny (i'd pay $30.00 for one that's how big of a difference it has made it my life). Anyway, GOOD luck and hopefully you'll all coping well with the heat. Rachel

Melissa, I would also suggest contacting your local Center for Independent Living they specialize in helping people with disablities get the help they need and all the resources avalible to them. You mention your were in Ohio - here is the website for the Dayton Ohio one - http://www.acils.com/ (they may be able to contact with the one closer to you) I was denied the first time for the SSD and they did my application for me and because the know the right things to say and don't say in the appeals processes they got my application right through the second time. They are about Advocating for people a making sure they get there needs met. Mind you it is a Non-profit organization to so they don't cost anything and they really work on your behalf. I'm all about find resources out there to help us because it's so hard to fight for ourselves when half the time your so sick you just want to give up. The center for independent living also got me a state funded $5,000 grant to remodify my duplex (with my landlord approval -afterall it was improvements) to make it easier for me to get around when I have to use my wheelchair when I'm really sick. That's how proactive these people are in helping people become self sufficient and finding the resources out. All at not cost for me. They even filled the applications out for me.

please correct me if i'm wrong, but my understanding (after a LOT of reading/research) is that this is only the case if you have already been approved for SSDI. thus, it does no good if you're in the "waiting to get approved" stage of the game. (i live in the fourth worst county in the country in terms of wait-time which means it could be almost 4 YEARS from my initial application until i get coverage.) and i did apply early in the game....about 6 months after i had to stop working. melissa Melissa, From my experience with COBRA you can normally have 18 months of coverage but if you are determined Disabled through the Federal Government it is considered a qualifying event and COBRA can be extened 29 months (if you notify your employer within I think like 30 days). Then Eligibility for Medicare is another qualifiying event where coverage can be extended to like 36 months. I know that the purpose of COBRA (CONSOLIDATED OMNIMUS BUDGET RECONCILIATION ACT OF 1985) was to get people to have medical coverage until the point of Medicare taking over (2 years) so most empolyers with end the coverage once Medicare kicks in or until they get another insurance coverage. I'm not an expert and most of my questions I have had been answered by talking to the administratiors and regulators of COBRA in San Franisco - you can get in contact with them through the department of labor - 1-866-444-3272 ext. 2 or read online at www.dol.gov/ebsa. But I suggest talking to live people it's so much easier plus they will fight for you and on your behalf. I know this (extention of COBRA) is very regulated. If you want to get extented coverage you have to play the game by their rules. Which is frustrating and hard (because it's not like it's one cheap or two they make it uncomplication or easy or even inform us on what exactly to do). I know I had to apply for SSD within certain amount of time my COBRA began. I would suggest calling that number to ask the specfics. I don't remember. But I do believe that once you put in the application no matter how long it takes them to process it that becomes your officical Application date. Then depending on when the get it done that make an Entitlement date and back pay unually 6 months. For example: I became disable on Jan. 2004 - I went on COBRA on June of 2004 I applied for SSD on July of 2004. I didn't get approved until Jan. 2005. My official approval date is July even though I didn't start reiceving benefits until Jan. 2005. So my entitlement date is Jan. 2005. I hope that make sense... So because I applied within the alloted time for SSD my COBRA was extented. I just got medicare in July of 2006 (2 years for my SSD approval date) and up to that date I have had COBRA coverage. On a side note SSD and SSI are two different things. SSD is Social Security Disability and Social Security Income. You don't have to qualify for SSI to get COBRA just SSD. SSI is a supplementary income you can get in addition (if you apply for it) to SSD which will give you extra money each month to the SSD. It also allows to automatically qualify for Medicaide to the state welfare department (which with be FULL MEDICAID - meaning no co-pays for doctor visits, or prescritions and you don't have to pay left overs for what they don't cover). Plus if you qualify for that they will cover 3 months past medical bill. It's a definite to apply for. But again no nessary for COBRA. Anyway. I hope I clarified what I mean't earlier. Let me know if you have more information or stuff I can ready (as you can probably I'm totally insterested in this stuff). Thanks, Rachel

Deeplyset- apart from the other advice and helpfulness, you must have one nice insurance company, because the CS people I always talk to are haughty, unhelpful, and sound annoyed that I should have deigned to question anything. Haha. I won't give up, though! Oh I hear you! I get a lot of the haughty, unhelpful and annoyed people. I just point out to them I'm trying to understand what is going on and they are being haughty, unhelpful and sound annoyed and if they have a problem assisting me as a costumer service respresentative then I would glad speak to their supervisor. That usually straightens them up. Rather than me getting frustrated and dealing with the crap they deal out and just point it out and move on to some one else even if it means hang up and calling right back to get someone else in the office. Or simiply asking to speak to someone else a little more patient and nicer. It works. I play the card "well obvious you can't explain this to me to send me to someone who can." Their job is to service you (no matter your need and how dunce you may sound) so push till you get it serviced. You have to be persisent to make them do there job. Nobody wants to work harder than they have too. After all they just get paid the same whether they sit there or talk to you. Make them earn there money. Good luck and again be patient with yourself and hang in there IT'S SOO SOO Hard. If you want to email me directly with more questions it's angel_2me30@hotmail.com One thing about SSD that I didn't know until it just happened is that once you are on SSD for 2 years your automatically become eligibile and they enrol you in Medicare (you then get state funded medical insurance) so as long as you can hold out and get insurance coverage until then (for two years) you will be good to go. Another reason to get SSD as soon as possible. And under COBRA they have to let you have extentions on your COBRA until you get Medicare coverage. Because there are qualifiy events (with SSD) to extend it until that time. So, the benefits of that it the if you have continuing coverage it cancels out pre-existing conditions (in most states - I would talk to my state insurance regulartory agent for help on this) HANG IN THERE EVERYBODY

Ooohhh, I so feel you with the pre-exsisting stuff!!! I have soooo been there. I just went though this with my insurance company (great west - if famous for this stuff). HANG IN THERE... I don't know if your policy has a preclaimer like this or not but mine did. It said that anything that was a preexisting condition will only not be covered for the first year you have the insurance! So if you are 7 months into it you may only have 3 months to go. I would look into it and see if they have any time frames like that on there. Also, did you have prior insurance coverage prior to getting this insurance? Sometimes they can only deny payment if you were not being consistently covered by anothing insurance prior to this coverage beginning. I would call and talk to your state insurance regulartory agency about the rule and they can give you guidance on how to fight it without having to hire the lawyer and spend all the money. The insurance regulary agency job is to give you advice and keep them inline. Another thing I learned is that the insurance companies are only going to be paying things according to what the diagnositic codes your doctors are submitting. I know that may be benifical information when dealing with the preexisting condition. Because if your doctor submitting a certain bill with a certain code the insurance company will tag it accordingly (even it it wasn't exactly what you had gone to the doctor for). From my experience I found that gathering all my EOB - or explanations of benefits and learning how to read them (by spending hours on the phone talking to the insurance company asking questions as well as my providers) has helped put some power back in my hand in getting my bills paid. I use to just take those and threw them aside (not really understanding them) but when all this pre-existing crap starting happen I starting to learn how to read those and found out how vital they are. EOB are what the insurance company sends the provider to tell them how they get paid. If you take time to make sure they line up with your policy and which bills they are and aren't paying and HOW much it will help clarify and unconfuse so much. THE EOB will do that. The other tool that will help is itemize statements from your providers. You can call your providers and request an itemize statement. It will tell you who's paid what, who hasn't and why. It's basically a print out of your account (that you are entiled too). it will help you figure out exactly what the insurance company is and isn't doing. But overall the best thing I ever did and still do dealing with this is CALL THE INSURANCE COMPANY customer service agents. They can work so much on your behalf. They can file claim, fix problem, reprocess unpaid claims, and fix alot of this pre-exisiting junk without even having to do the appeals (although never don't file them). They can explain policy by you just asking question after question and the more you know the systems the less you get pushed around and taken by them. As far as the outstanding bills, contact your providers and ask them if you can have a hardship application (for people if a finical difficult situation). I got over $150,000 in medical bill written off through hardship application while going through this with my insurance company. You'll be surprise at how willing people are to work with you if your willing to work with them. Most of all HANG IN THERE. I know it's so stressful and i know the last thing we need is stress.

When I can't walk and I'm stuck in bed and all that icky. My best friend will take me out in my wheelchair and stroll around the lake. She also will sometimes bring some bread so we can feed the ducks. After being stuck in the house and feeling so bad going out seeing to other people, life in beathy, and playing with the ducks I feel better. Plus, it I get to play and laugh with my friend.

If you have ever has an Autonomic test before the ANSAR test is very similar to that but a lot less complicated. You sit in a car with an ekg hooked up to you and a blook pressure chuff. That are then connected to a computer that run the data through different data and charts. They have you rest, stand up, and breathe in (through nose) for 5 seconds and out (through mouth) for 5 seconds (very deeply) for like 15-20 times trying to get you to hyperventilate (i think), you also have to bear down really hard severly times in a row... I'm not exactly sure what happened to indication the PPS. But they mentioned cardiovasular stress and hypertension. So, I'm assuming my heart rate and blood pressure increased. I started to black out, was very nasueate and dizzy. And they pasued the test for me to recooperate. They didn't tell what would have happened in a normal person but I would assume asking anyone we know to perform the same thing and watching should tell us. I know that deep exaggerated breathing always does this to me. The person who had the test done was an Endocrinologist - however they persformed the test and gave me the data they said with the complexity of my case that they normally only use it one Diabetes patients and people with Thyroid dieases because they tend to have Autonomic problems so they thought (since they are into research) that it would be insterested to do on me. So they are just going to refer me back to the Mayo Clinic and my regular Neurologist to handle it. For treatment... I guess they have used nortiptyline (unsure of why...) with success with Diabetes and Thyroid patients with PPS, however, because of my history and complexity they are uncomfortable with any treatment... Futurehope - "I'm surprised that there would be a different new disorder identified unless it had different mechanisms or causes and treatments." I'm surprised by this too... That's why I'm wondering if they just don't know about POTS... When I was given they diagnosis I told her about POTS and she was like okay I pass that along to Dr. Colombo. i'm hoping he'll have a clue since he came up with PPS... And I'm with you, WHAT'S Different? I personally have already been on Nortiptyline. - For headaches - ANYONE ELSE? I don't know...

I think this is a miracle but my caretaker happened to run into someone at work and was talking to her about me when she very understandly said, "She knew" well come to find out HER DAUGHTER HAS POTS!!!! She is only 8 years old and has been sick for about 5 years. I have desperately wanted to connect face to face with someone going through this and now it looks like I'm going to get too. It's already been really encouraging for me and my caretaker. I FEEL SO BLESSED. Anyway. I already have my SSD set up, but I was wondering can a Child get SSD and Medical benefits? Her parents have had a horrible time finically since she has gotten sick and I know the state offers it for children somehow because I had SSD when I was like 12 and sick with Myasthenia Gravis. But I wouldn't know where to start with the whole POTS and SSD because I'm under SSD as an undiagnosed illness (since I got it before they know what was wrong with me - do I need to get they changed ???) Anyway- Does anyone have any suggestions for me so I can help get them the information they need??? Rachel

I was just diagnosed with a Autonomic Nervous System Disorder called Paradoxical Parasympathetic Syndrome (PPS). They diagnosed it by an ANSAR test. It is just a brand new thing that just came out identified by Dr. Joe Colombo. Has anyone heard of it... The only thing I know about it is the little they told me... symptoms of anziety/panic disorder, restless leg syndrome, GERD (which from what she told me is stomach problems like gastritis...), irritable bowel syndrome, and sleep disorders. They main reaction they recorded was during deep breathing my heart rate and blood pressure freaked out. Thereby indicating they disorder... Mind you all of these symptoms just say POTS to me so to have another Disgonsis as ANS-PPS for sympotoms that are all POTS seems to me weird... Especially when I had the test on a really good POTS day (I was able to stand the whole 5 mintues with my heart only going to about 94 - amazing) Anyway... Anyone else heard of it...

I also stayed the Best Western Soldiers Field. I initally booked a suite but because they were across the street I switch to a room that was in the main building. I was really pleased with them. They have a full service restraute inside the hotel and shuttles that will take you everywhere you need in town. Including back and forth to the mayo clinic. Their shuttles are also wheelchair assesible (in case all the testing make you really sick...) I don't know if that's a problem for you. But they was one thing that I had to have. They also have a pool and game room. If you have any free them. If you do have a rental car while you are there they were located convientally to shops and the freeway so it was easy enough to find your way around. Poohbear - You have a lot of really good advice. Most of the hotels around. Beside the ones the Mayo Clinic give you, will offer a Mayo Clinic Discount (by just calling and asking about it). The Mayo Clinic schedule my first appointment on a Thursday and then asked I stay at least 7 days. I booked my flight as such with no room for flexibility. (I never even thought about it... Good idea) So, I was really busy for that Friday and off the weekend. Then the Mon and Tuesday I had a lot of appointment but then on Wednes & Thursday I didn't have anything. And my follow-up appointment with the doctor was they Firday. Well, he didn't look at the results of my testing until that day so then they schedule me more test for that day and wanted me to stay into the next week... I was really frustrated because I spent two days doing nothing but that was just how it fell. I made sure to give them my leaving date right away when I got in so they knew ahead of time. I was never able to change it. I found that there were times (I've made 3 mayo trips - two to AZ and one to MN) that when I explained I was from out of state and had a plane to catch (ie it would be a hardship to come again or stay longer) that they would give me prioity on appointments. However, if I would have been flexible to change it I don't if I would have let them know that upfront. Maybe if push can to shove and there was no other option (ie I couldn't get in to an appointment or I couldn't get everything thing done that needed to be done) then I would. I just found that when they think they have all then time in the world or that your really flexible. They take advantage and their sweet time. Not thinking about everyday you stay your paying hotel and food costs. This happened to a friend I made on one of my mayo trips. She wait 2 weeks, just sitting in the hotel, for an appointment to come up because of scheduling and stuff. A trip that was suppose to be 1 week ended up being 6 weeks. A lot of that time she was just wait for appointments. Finally she got mad and talk to some people it moved things along for her. She showed me that you have to be realitively ridged (with resonablity) to ensure you don't get lost in the mess of things. As Poohbear, said "It's a gamble" but by persistence and using wisdom on when to give and when not to give you'll get everything you need.

Dr. R.D. Fealey, 200 1st St SW # W4 Rochester, MN 55905, 507-284-2511, Neurologist (Autonomic Specialist). I was really pleased with him in the since that he was able to give me a lot of helpful advice but as far a follow up and through... I've been disappointed. I figured if I want that kind of attention I'm going to have to pursue him or go somewhere else. He is extremely smart and he even invented different stuff to test conditions of for atonomic patients (ie the sweat test). He is very much into the research side of the whole atonomic disorder side, which I like to because It made me feel hopeful that people are out there looking for answers for us . Maybe, one day... Rachel Roselover, About the injections I also wanted to mention because they are relatively straight forward and easy even my MD can do them on a regular office visit. So, you may not even have to go to a specialist. When I initally get the injections it was kinda complex. I got them by trigger point injection in the hospital by an anthesiologists. But, once they found out how amazingly they helped and alleviated my symptoms (both headaches and POTS) my regular Docs. got me on these nerve blocks. It's just so simple, and easy going... I can't praise them enough. Rachel

I tried a lot but I get nerve block injected into my occipital nerves every 2 months. I think I would have died had I had to learn to live without these. I go to a NeuroOpthmaogist (sp?) and he injects them. It takes like less than 5 minutes and I get instant relief. My headaches goes from like a 9 to a 2-3 in seconds. I get them on both the left and right sides of the back of my head. I'm good for 2 MONTHS and them have them again. IT'S A miracle! My POTS symptoms allievate also. For the rest of the pain this is what i do... I also take topamax - 100 am and 100 pm. That was a long story to get too. And IBP 800-2400 mg. But, really it's the occipital nerve block injections with Marcain (just a numbing agent) that does most of the work.