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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.