Jillybeanbme

Wareagle, You live by Pensacola don't you? You DO NOT have to have a referral to the GI Docs at the Medical Center Clinic, unless your insurance requires you to have a referral. Dr. Ronald Powell there has experience with dysautonomia patients. Jill

Nina, My doctor switched me from Celexa to Cymbalta and I Love It!!! I have noticed a wonderful difference in how I feel with my POTS and my Fibromyalgia. I only take 30mg it has made enough of a difference that I have been able to cut back on my Lodine I take for my Fibro to once a day except of course when it's raining or about to rain I haven't really noticed it affecting my IBS, but then again I have been making a conscious effort to eliminate bread and anything greasy or fried. Good Luck!!! Jill

Jacquie, I get shortness of breath on a daily basis. It gets very embarrassing when it happens while I'm working and people can see that my breathing is very short, rapid shallow breathes. Then there are times my Fibromyalgia kicks in on the game with the muscles around my rib cage and it feels like someone is squeezing the breath out of me and I can't get a deep enough breath to keep breathing!!! The only thing that works for me is closing my eyes and concentrating on my breathing, making sure it's as deep as I can breathes, in through my nose & out through my mouth until I feel like I have it back under control. Good Luck!!! Jill

I got Mono for the first time when I was 5 yrs old. I just recently got it again and it kicked my butt!!! I was out of work for over 7 weeks. I slept so much that one day just blurred into the next. About the only thing it was good for was the 10lbs I lost from not having an appetite. I tried to look up info about mono, the most I could find said that once you have mono the virus never leaves your body and anytime your immune system is down or compromised it can come back. That is so NOT comforting to know!!! Jill

Hi Amy, I'm sorry you're not feeling well. I can completely relate. On Oct 17th my 5yr old & I both went to the doctor for what I thought was just Strep Throat. Well, that was the case for my son, but I had Mono also and I still have not been able to go back to work. I feel like I'm starting to get some energy back but if I do something then I'm sleeping all day the next day because it wipes me out! As for your cruise, do just what you said RELAX!!! Don't do shore excursions. They can be stressfull. Stay on the boat and enjoy everything the boat has to offer. And like Steph said Don't Drink The Water!!!! Drink Bottle Water Only!!!! You know your body best...listen to it! Good luck & have fun, Jill

Linda, I have Fibro and can totally relate to your leg pain & many other pains; which can sometimes feel like my body has been ran over by a very large truck!! My dysautonomia doctor sent me to Rheumatology for what he felt like was Fibro. The Rheum doc said yes and if I was not currently on some of the meds for my dysautonomia, I would have had all 18 trigger points. My started me out on just a low dose of NSAID's. Can you tell he's a little on the conservative side? By 3pm my AM dose had work its way out of my system and my body hurt in more places than before!!! He increased the dose and it helps some. Then, thanks to everyday stress of job, home & hurricanes (the change in barometric pressure severely affects me!) I had a bad Fibro flare, just lifting my leg to step up the curb on to the sidewalk brought me to tears. My whole body hurt tremendously. I got in to see my Rheum, he put me on bed rest for the weekend with taking muscle relaxers (Flexeril) 3x's a day, then 1 nightly after that. I can not believe the difference it has made. I still have bad days every now & then, but at least they are not as intense. Now if they could come up with some thing to help the skin sensitivity. If someone breathes on my neck I just want to deck them!! And buying clothes is always fun. I walk around stores feeling the material of everything to see if I will be able to tolerate the sensation. You just have to laugh and keep going. I hope you find relief soon!! Jill

Lisa, Topamax can, in some people, cause Acute Angle Closure Glaucoma. I hope you had an eye exam after your incident with the blurry vision. Here is a link to an article about it on the American Academy of Ophthalmology web site. It's the last article on the page. http://www.aao.org/education/sit_glaucoma/20050401.cfm Take care, Jill

Chad, You are in an excellent postition, with the contacts in your life, to bring the attention to our disorder that we have not been able to obtain. I wish you much success with your band and look forward to your posting. I have an appt. Thursday w/ my dysautonomia doctor, who also suffers from it as well, I will ask him if he has heard anything. Take Care, Jill

Melly, They didn't send you to a psychologist because of the 'crazy' thing we all go through. In some states it's part of the procedure. My Mom was recently approved for disability in the state of Alabama and she had to see a psycologist. She has multiple health problems but not dysautonomia. She had even been told to bring a friend and a family member for the psychologist to speak to as well but he did not want to talk to them. The visit to the psychologist I think is really to weed out those who are 'malingering'(faking it). She recieved her first check 2 weeks before she recieved her letter stating she was approved because they come from two different places. Good luck to you!!! Jill

HEY OPUS!!! I'm so glad to hear all is well for you...I was worried. I was over your way for work last month; the beach there looks about as bad as our beach does. What Ivan didn't destroy, Dennis and Katrina did. Congratulations on your new job...that's great!! Stay well, Jill

Sallyann, I get pain that starts at the base of my scull (sometimes as highup as the back of my ears) and radiates down my neck and trhough my shoulders. My dysautonomia doctor and my fibromyalgia doctor both call it the 'clothes hanger effect'. Bascially, the pain comes from the lack of blood flow to those muscles and tendons. When done properly, a deep tissue massage does help to increase the blood flow and temporarly relieve the pain. Good luck, Jill

Opus, I know the area you live in was hit again, I just wanted to make sure you are okay. We did fine, we went to stay with family in North Alabama. But still the same, the stress of it all does a number on your body. I feel like I have been ran over by a buldozer!! Jill

Poorbear, I'm very sorry to hear about your friends. I live in Pensacola and the reports we are seeing on local channels are not good. The devestation over there is far worse than what we went through last year with Ivan. My prayers are with you and everyone else with family and friends in that area. God Bless, Jill

Michelle, Have you thought about approaching any of the pharmaceutical companies? Not only for donations in producing the brochures but also for the possibility of their drug rep's distributing them to physician's they call on. Everyone knows those of us with dysautonomia support all of the pharmaceutical companies with the multiple medications we take!! Just a thought? Jill

My name is Jill and my best friend of 23 years gave me the nickname Jillybean when we were in middle school. I added the 'bme' as to say 'That's Me!'

Hey Kathy, I got my 'Spit Kit' yesterday!! I was having lunch with my best friend and she began telling how moody, hormonal, fatigued and plain awful she was feeling. I started telling her what I knew about HRT and that I was thinking about doing it, would she like to do with me. We went to visit this incredibly knowledgeable compounding pharmacist who thoroughly explained everything. Since she and I both are still cycling, we will be spitting about every 3 days for a month to get an overall picture of the fluctuation of our various hormone levels throughout our cycle. I'm excited! I'm actually looking forward to starting my period this month so I can start spitting! I know it won?t be a ?cure all? but I look at it as one more way to treat the symptoms and feel better. After all, isn?t that what all of us really want anyway...to just feel better. Jill

Kathy, I know of 2 pharmacies, 1 Family Practice physician, 2 OB/Gyn's and 1 Nurse Mid-Wife in my area that are doing the Bio-Hormone Replacement Therapy. And those are just the ones I have personally talked to through my job. I am very interested in trying it myself. From want I understand Suzanne Summers even has a book out about it. I recently had to change my birth control method due to my dysautonomia meds and I have noticed that I am a much nicer and happier person since coming off birth control pills. My migraines are triggered more by the fluctuation in my hormones through out my cycle more than anything else and from the literature they have given me it makes a lot of sense. I am always open to a more natural approach to feeling better. Who knows maybe it will help my Fibromyalgia as well. I hope it works for you. Jill

Hi everyone! I've been gone a while...busy with life, job and feeling like crap. I have now had Fibromyalgia added to my list of problems...sorry off the subject. Splenda....I think it *****!! I know that's rude and blount..please let me explain why I feel this way. I don't like artifical sweetners..never have never will. One, I can stand the funky aftertaste they leave. Second, I don't like putting possiable cancer causing chemicals in my body for the sake of saving calories. Splenda is sneaky. My doctor told me had to increase my water intake to 3 liters a day, roughly 100 oz's. I thought there is know way I'm going to be able to drink that much plain water! Enter Dasani's new 'Naturaly Flavored Waters'. Wow they taste great, there 'naturaly flavored', I can do this!! I was buying these things like hot cakes!! I was doing great I was up to 60 to 80 oz's of this 'Naturaly Flavored Water' a day. Then one day I was cleaning out my car and as I started to throw away the Dasani bottle I had just finished I noticed it all of a sudden had a Splenda logo on the side of the bottle. The bottle still said 'Natural Flavored'. The only difference between the bottle I just bought and the one I was about to throw away (besides the Splenda logo) was the one without the Splenda logo had more sodium. I called the Coco-Cola's 800 # and asked why were they marketing this as a Naturaly Flavored product when it is made with an artifical sweetner? I was told because Splenda is made with sugar. I told the representative when clorine is used to make something it is no longer NATURAL!! and I will no longer be using there product. I have now learned Splenda's generic name is Sucralose. I will be reading labels more closely from now on so I don't take in any more UnNatural Natural Flavorings.

Steph- I talked to the pharmacist today. I was wrong about the Theophyllne. It doesn't effect birth control, birth control increases the effects of it. The Phenobarbital he said will Definitely DECREASE the effects of birth control. I solved the problem rather quickly today. Luckily for me it's that time of the month and I was able to get in to Ob/Gyn for a modern no copper IUD that my meds won't have any effects on!! Amy- The 3rd med he put me on was Klonopin. I'm to take that and the Phenobarbital at bedtime. And I already had a rx for Xanax .25 for daytime. He explained to me why the combination and I would love to explain it to you if I could remember it all. Something about it helps to control the pooling in my spleenic area and helps relax my over active parasympathetic system. I took all three meds last night and it may just be all in my head, but I felt great today!!! The best I have in a long time. I got down a full liter of water today. But I guess my 20oz Dr. Pepper cancels out some of that water. I will try harder this weekend. I've somehow have to make it become a habit.

Steph The two meds he gave me are Phenobarbital and Theophyllne. There are a lot of antibiotics that effect birth control as well, always read the info sheet from the pharmacy or ask the pharmacist. I love my children dearly...but I do not want anymore. Therefore I pay close attention to drug interactions with birth control. I bought a 1 liter bottle of water at lunch today and by 5pm I had only drank 1/2. It's going to be a long hard challenge. Thanks for the encouragement!

Hi Tearose, I'm glad heart is well. I saw the heart break article too. That was kind of them to acknowledge something that those who have had 'Broken Hearts' have known for years. You hear cookies calling your name....and I hear chocolate calling my name. Jill

Merrill, It is the simple things in life that makes us so happy Thanks for sharing! Enjoy your nice clean oven!! Jill

Hi everyone, Sorry I haven't been chatting much lately, between work & children I haven't had much time or energy to get on the computer. I went to the doctor today to get the results from my tilt table. I'm still abnormal. Like I didn't already know this! I had a lot of oscillation in my BP & HR, enough to where I probably should have been passing out. He put on 3 meds, 2 of which the info sheets from the pharmacy says will decrease the effects of birth control Not Good!!! I'm defiantly gonna have to call back and get some more info on that!!! All the things he wants me to do, I'm pretty much already doing except drinking a lot of water. He wants me to drink 3 liters a day. That is going to be hard for me, I'm not a drinker. I drink something when I'm thirsty and that's it, I'm not one to drink just to drink. I hope everyone feels there best and thanks again for just being here. Jill

1) Jill 2) The Color Purple and Are you there God, it's me Margaret...Who couldn't relate to it when they were 11yrs old!?! 3) Thelma & Louise and Chocolat 4) Happiness for me is...my sons, music, a sunset on the beach and helping others 5) Something no one here knows...I'm a Christian

Ernie, I'm sorry your medical system is like that. People here in the US complain about high insurance premiums, but I would rather pay them and have the access to the healthcare that I need. Physician's here are paid well, therfore there are more of them. Granted they all are not in it for the right reasons, but at least we have more choices. My heart goes out to you and everyone else who has to deal with socialized medicine. I so wish there was something I could do to help. Best wishes, Jill