lalalisa

Hello, I was pretty nervous about my hearing but it really went well and it was MUCH less intimidating than I thought it would be. I also had a lawyer which helped because she did most of the talking. If you don't have a lawyer I would just try and expound on each question talking about your symptoms - describing how they affect you to the best of your ability...just be honest and specific. For me there was a judge, a transcriptionist, an occupational specialist and then myself and my lawyer. They also let my husband come in -- as long as he didn't say anything. If you have any other questions feel free to send me a message. I'm sure everything will go well. Take care, Lisa p.s. I forgot one more thing...did you have any dr's fill out forms towards the end of the process that talked about your limitations? I think they're called "Residual Functional Capacity Forms" --- they were the most important part of getting a favorable decision for myself.

This is great news Ernie, I'm so impressed!! I hope you enjoy yourself and have a wonderful summer enjoying the outdoors. =) Thanks for sharing, Take care, Lisa

Rachel, Hello! Thanks for posting about your swimming, I'm impressed! I truly hope this ends up helping you! Take care, Lisa

Morgan, I'm sorry to hear about all that you've been through lately but so glad that you were able to get wireless internet!! I'm glad you're back!! Lisa

Ernie, Thanks for sharing this news with us! I think this is a great idea and I'm excited for you! Have fun! Lisa

Hello, It sounds like we have similar situations as far as sinus issues. I had sinus surgery last year because I get so many sinus infections each year. I had some polyps that were removed. I also have bad allergies and take Flonase, Singulair, Zyrtec and Benadryll daily. I recently started Sub lingual Allergy Drops (shot alternative) and had to go completely off of my beta blocker in order to take these. It sounds like going of of the beta blocker was much more difficult for you. The only advice I can give is to consider rinsing your sinus's with salt water each day. The salt water sprays are good but an even better method is to get an bulb syringe and fill a cup with warm salt water and rinse out your sinus's daily. It takes a while to get used to this but it really does help. (It rinses out allergies and also helps rid sinus's of infections as well) If you want to know more about this method just email me. My dr. prescribed this for me and it's the only alternative method that's helped me. I'm sorry you have this sinus stuff to deal with and hope it gets better, Take care, Lisa

Hello, I, like Flop mentioned, take a "regular" birth control pill in a row for a few months. My dr's advised me to do this. I had a hard time with side effects from some of the pills and found that Yasmin works best for me. Hope you find something that works well for you without side effects! Lisa

Morgan, Thanks for sharing this with us! The circumstances don't sound pleasant but I'm just so happy for you! Take care, Lisa

Hello, I just wanted to chime in and let you know that I am hear listening. It sounds like you're having a really tough time right now and I can't imagine what it must be like to have so much pain on top of everything. I really hope things improve and that you can stay encouraged in the midst of such difficulty. Can I pray for you? Take care, Lisa

Hello, I just wanted to chime in and let you know that you are not alone. I experienced the feeling of being disconnected from my surroundings intensely at the beginning. The first year was definitely the worst for that symptom for me. Over time that foggy feeling has improved...some days are worse than others but none of it compares to how it felt in the beginning. Just wanted to let you know that you are not alone and I understand how frustrating this is! Take care Lisa

Hello, If your sister is needing a dr. and is willing to drive to Louisville (about 90 miles) I have recently found a cardiologist that Dr. Grubb knows named Rebecca McFarland. Just let me know if you'd like more information. She seems to know quite a bit about POTS. Take care, Lisa

Alicia, I've taken Phenergan and it makes me really really sleepy. I can't remember if I reacted to Zofran though. Hope you find something that helps!!! Lisa

Hello, I went under general anesthesia last year for sinus surgery. My dr. wrote up something for the anesthesiologist briefly describing POTS and then also adding the importance of extra fluids. If your dr. won't do this as others have suggested speaking with the anesthesiologist would be a good idea. I was pretty nervous about having a bad reaction to anesthesia but in the end I was fine. I felt "normal" within a couple of days. Hope all goes well! Lisa

Hello! Happy Birthday!! I hope you have a wonderful time celebrating!! Take care, Lisa

Hello, I wanted to also say hi and welcome!! We're glad you're here and really hope that are encouraged and find lots of helpful information as well. Take care, Lisa

Thanks for the tip. =) I've seen this in stores but wouldn't try it until I heard from someone else that it worked and didn't turn them a funny shade! Take care, Lisa

Jump, Are you going on it because you have a high heart rate? I'm guessing this isn't going to bring complete clarity or anything but if you find yourself with a heartrate of 45-55 on the medicine I would decrease the dose or go off of it because you don't need to be feeling "slugglish" due to a medicine. When I was on the 25 mg dose my heart rates were in the 40's / 50's and my dr told me to half the dose because this heart rate wasn't good (because you feel so poorly). Hope this helps, Lisa

Jump, Hello! I wanted to respond to your post because although I recently went off of Toprol XL I was on it for about 5 years. (The reason I went off of it is because i needed allergy testing / immunotherapy) Are you taking Toprol to lower your heartrate? That's why I took it and it definitely helped. 25 mg actually made my heart rate too low so I took a half of a pill while I was on it. I didn't notice any side effects with the small dosage I was on but you should keep an eye on your blood pressure because it could lower this at the same time it lowers your heart rate. Hope this helps!! Lisa

Deb, I really appreciate your post. Thanks for encouraging us by reminding us that some do greatly improve and even recover. Take care, Lisa

Ernie, Hello! I'm sorry I missed your post as well. My husband has been sick and in the hospital for 2 weeks now and I just haven't been around. I'm SO glad to hear that this researcher is working so hard to help you! I'm looking forward to hearing more about what you learn from this research! Take care, Lisa

Hello, I also get migraines with aura. I find this very debilitating as well. I decided to post this but I truly have no idea if there is a connection or not....I started taking 2,000 IU of Vitamin D daily about 6-8 months ago because my family dr. said that all of his patients are vitamin d deficient (and this was the recommended dosage). I've noticed a huge decrease in the number of migraines that I now get with the aura (I still get a migraine every once in while but recently haven't been getting the aura). Again, I have no idea if this is connected but thought I'd share since you asked about alternatives to medicines. I take Axert for my migraines when they do come and I seem to have the fewest side effects from this drug. Hope you find something that helps! Lisa

Thanks for all of your help, I really appreciate it! Carmen, thanks for taking the time to include the information from your attorney - very helpful!! Thanks again, Lisa

Dizzy, Hello! I just wanted to say hey and that I'm here listening and that I'm glad you posted. I'm SO sorry that you are struggling so much right now. I know it must be really discouraging to look back to your 6 year date and see that you are feeling even worse right now. This illness is so difficult for anyone at any age but I know that being young and sick can be extra tough! Please hang in here, we are here for you!!! Can I pray for you? Take care, Lisa

Hello, So is the "date of onset" the date when I became sick? (this was over 5 years ago for me - so I should now be eligible, correct?) It's encouraging to hear that they may start my benefits even before I get the information in the mail, thanks. Lisa

Hello, After 2 and 1/2 years and a court hearing I've been approved for Social Security insurance benefits. (I posted this good news about a month ago) The paperwork that I got in the mail that says that the judge gave me a "fully favorable decision" says that I should receive my benefits information within 60 days. My lawyer told me not to wait 60 days but to go to the SS office and ask for my benefit information. I followed her advice and was, from what I can figure out, told some things that were inaccurate while there. I was told that: 1. I needed to go back home and wait for the information to come in the mail. 2. That if the information didn't come I should come back and ask for my benefits. 3. That I will now need to wait 2 years until my Medicare benefits will "kick in" (what?) I questioned the information repeatedly and decided to leave. I called my lawyer and she told me I should have asked for this person's supervisor. (I will definitely do this next time this happens) As you guys know - trips to the SS office with the long waits, etc. are extremely draining physically. I guess I am just wondering what others experiences have been with receiving Medicare benefits. Did the information come in the mail? It will be 60 on April 22nd and I'm guessing I'll be heading back to the SS office again. Thanks for any input! Lisa