tinkerbella

Thanks for the info Batik. I'll ask my cardio if that quercetin will mix with my cardio meds. I do take masto meds and breakthrough allergy meds. But, I never tied the two conditions together. Maybe I need to go back on my gastrocrom by mouth again. The mast cell doc pulled it all I started to swell very quickly. Once again with me I should start all meds very slowly. I'm very sensitive. : ) How much of the quercetin do you take? Do you mind telling me what other allergy meds you take? Amounts and how often? I would love to get this under control and let all my team docs know what is going on. Thanks so much for all your help. Bellamia

That was wonderful. Thank you for sharing. That is a wonderful story to pass along to others... : )

Batik is right. Don't mess with your meds. Talk with your docs before you do anything no matter how long you have been on them.

Sweet Elana ~ You have been on my mind....I have never been able to have an antidepressant work for me...All SSRI's give me terrible, vivid, nightmares. All the others just made me fat and my doctor decided to stop putting me on them ever again due to my sensitive system.... I read online that the best thing for depression is looking at pictures of people you love. I try to have a slide show of the ones I love and things I love going as much as possible. I find that stimulates me to smile and laugh. I also try to video chat as much as possible those I love also. Maybe we can set up a time to do a video chat soon. I know this isn't for everyone, and I hope you find what works for you. I'm trying to do as many non meds things as I can, because of the possible mito and cpt1 of the co2 chain. Sending you and your family lots of love, Bellamia ~

Now, that I understand my body better after all these years of trial and error. For me, it would have been better to have started any med in tiny pieces due to being so sensitive. It seems to me that many others here seem to be the same way. I'm sorry you feel so terrible. I also live with migraines...Some days I tie an ice pack to my head and put on sun glasses trying to numb the never ending pain. I've used Migranal, but you can only use it twice a month, as it will cause rebound headaches. I read the smell of fresh green apples is suppose to help take away the pain. It sure can't hurt. Feel Better Soon! http://www.migranal.com/ Well I just l@@ked up Migranal and I haven't taken it in a few years and I won't be taking it again after reading this. It gave me much needed relief, but I wouldn't have taken if I had know this info.... You can decide for yourself.

Carrie, Wishing you the very best. It is never easy making a decision to insert a medical device into our body I remember the day my doctor suggested to me a pacemaker... I was stunned! I talked my doctor right out of that pacemaker @ appointment # 8 I think it was. He agreed with me after, knowing I would still have POTS and still have years of pacing and ablation after ablation... Meds to take, and with me things don't tend to go easy. We are all different, and all need to make that big overwhelming decision for ourselves, when and if the time comes. Thanks for sharing your great blog ~ ((((((I'm buying a round of hugs for everyone)))))) Bellamia

I get 2 liters of iv fluids Sodium Chloride with Potassium a day and 500 ml of the same thing at night . So, basically I'm attached to fluids all the time. Funny, but my sodium levels used to be higher when I was getting fluids less or just drinking salt and adding it to my food.

Good luck, It made me worse and the neuro decided to take me right off the stuff after a few week. I was having more difficulty walking and talking. Didn't help my pain at all.

OMGoodness, my bladder or IC is flaring so bad tonight ~ I Googled this and where do I land...Right back here with all my old friends. I used to get this ALL the time and I've been starting to have problems again. I guess it's time to go back to my mast cell doc, if I can make it through the night. My pots has been out of control lately and my cardio did say, "do you have allergies?" I feel so sick tonight.....any home remedies for quick relief? I'm ready to try anything.....I used to drink cranberry juice, but my Allegra says do not to take with juice. So can I have juice after I take it? I'm so confused. Well, nice to be back home here.... hugs to all ~ Bellamia ~

I'm gonna have do something about that right now : ) I play a normal heartbeat in the background, as they say it will help get your heart into a normal rhythm.

That was wonderful news to read : ) Congrats all around we need more good news about educating Others about POTS and raising money. Best news I read all day. BellaMia

Hi Kayjay ~ Sorry your son is still having a hard time. My prayers are with you and him. I also have OI. I can go from one extreme to the other. My doctor has used the 24 hr holter monitor many times, as he feels it is like a portable tilt table and gives him lots of information. Less expensive. Maybe that might be a way to start. I wish him the very best and think of you often. : ) Love, Bellamia ~

I feel for all of us...hang in there everyone...Life is very hard, but we all have each other to turn to for advice and help. I know many of us have had to run to doctor to doctor who look at us and just don't get it. I've had my share of doctors who were judgmental, had big egos and half listened to me. Then I was blessed with wonderful caretakers. Learned to speak up for myself. Here's some info on chronic fatigue syndrome: I'm not saying you have it, but it was my story...I hope you find an understanding doctor to help you. Keep a notebook of your daily temps and times of them. I also would keep notes of any other symptoms. We have to be our best advocates. My notebook always goes with me to every visit to the doctor and I cross off each question to make sure I ask everything. http://o5.com/4-frequently-asked-questions-about-chronic-fatigue-syndrome/ Have a good night all ~

When I went through that phase or what I call pots layer and I was sent to an infectious disease doctor. He did an intense investigation and gave me the dx of chronic fatigue syndrome. I was to keep a notebook and if those fevers ever started going over 100 for any length of time. I was to come right back and we needed to look back into the issue. Only with the flu and I'm in the hospital I've been 103 and they took immediate action. Now my temp is never normal unless I'm getting sick.

Hi Ray, Welcome to this wonderful forum. I'm sorry that you have dysfunction of the autonomic nervous system...Did you try any of the major hospitals in your area? This is a great place for online support. If you can't find one maybe you could start one. I wish you the best of luck. Bellamia ~

You gave me a good giggle too. I needed that. lol ~ Same here about feeling like I might just drop dead too.Thought I was going to last week on the bus ride home after surgery all alone scared to death. Wondering if I should have the bus driver drop me off at the hospital, but he probably couldn't because I didn't ask for that when I ordered the ride. lol..My neuro told me now with the added mito... that with the Chest Pain they might not take it seriously that I could be having a heart attack. I hate going to or rather being sent to the ER over and over again for Chest Pain. I swear my chest must glow in the dark now.

I just want to add that I've had the skin test and they have neuropathy before they found POTS. My neuro uses me like a voodoo doll sticking pins everywhere asking if it hurts? Do you notice when you hurt your hands or feet or do you find out when you take off your socks and see a cut or a huge bruise? I have to be very careful to watch my hands and feet and know when to get to the ER before it's too late. Never walk around if your feet should fall asleep, sit till they wake back up. I've had a broken foot and many sprains due to lack of feeling/numbness.

Sorry you have this horrid symptom ophelalite. For me it's the left side of the body... Many other potsies have also told me this also. My stroke like events they were chalking them up to a variant of a migraine years ago. I do agree it is worse when I'm extremely tired and my muscles are trying to hold me and they just can't. This past year I was also dx with Mitochondrial disease. One of the co2 chains. I would make sure you bring your own coffee in for meetings. I can't trust when a coffee shop makes it for me. I have to laugh "old neuros blame everything on STRESS," hope you have a new younger open minded one. I hope you can get this all under control. Also, on here I put a list of all the products that caffeine is hidden in. Foods and meds that you wouldn't think of. So check that out also. Feel better. Bellamia~

Can you take a thermatabs and a large glass of water before you get of bed? I like coconut water. I have a technical assistance that I send all my vital signs in to the health care system for my doctor before I get out of bed. That way I know what I'm dealing with.I usually leave a cooler in my bedroom with supplies of G2 water, food, energy bars, waters, till I'm safe to walk around which can be hours and hours. Everything I need is right by my bed. I carry a bucket down the stairs and fill it when I go back up with what I'll need for the day. Hope some of this may help you ~

Yeah!!!! Glad you are back ~ ; ) Whoo Hoo!!! Bellamia ~

I went through a period of intense rosacea. I had always had beautiful skin. We questioned Lupus butterfly rash, but no one did a biospy. I used metrogel and it only got worse. I was so embarrassed and then my doctor told me to use Finacea. She said you use it for only three months and stop it. After that you never need it again. She was right.I also have MCAS. I do have a high ana. To this day my skin is back to being nice again, other than being sensitive, I can't complain. : ) Bellamia ~

Kayla...I hope you or mom can let us know how you are doing... Sending lots of positive energy and prayers to you. >>>>-Get well--Kayla-we-miss-you-: )-->>>> Bellamia ~

Yeah,I was just thinking did anyone get any? Saw this today and though we could make a bigger statement from our stamps, to bags, t shirts.. http://www.zazzle.com/create All it takes is one person at a time. To get our message out there. Maybe if the message is unique,but the word is the same, POTS people will start to take notice. I think this is what I'm going to when I can afford to. Thanks Kim for asking about me. I was back in yesterday, had to have two teeth pulled and I thought would die with all the chest pain after on the ride home in the bus. It was a rough night. Glad to be home now.

Sending lots of love and prayers ~

I got a script for mega dose Vit. D this week. I haven't started do to all the scary side effects listed ( I know that sounds silly, but you should see my mega allergy list ) Every side effect listed I already have before taking. This is from a new doctor, so I don't want to sound like a crazy lady calling next week. Also, I guess I can't take any other vits while taking this???? Dazed and confused right now. BellaMia ~