issie

I'm talking about myself, mostly. Mayo told me to quite using transdermal hormones. They said I have a liver tumor that is significant for hormones. Since I've only used transdermal ones, I doubt they are the cause. Because anything used on the skin goes into the blood stream and the liver doesn't have to process it. If it's taken orally, your liver does process it. I'm a naturalist, I don't like to take any kinds of meds. I'm real into vitamins, herbs etc. I didn't understand why Mayo, didn't like me taking the Milk Thistle. I feel like this has probably protected my liver from being more damaged. I also have fatty liver and eat organic and very healthy. I am over weight though, but I doubt it's a contibutor to the fatty liver and tumor. I think due to the dysfunction of our bodies, our livers and other organs are not functioning properly. If our autonomic nerveous system is out of balance, this can cause our organs to malfunction also. I liked the idea of the glucose issues. Since allot of people are insulin resistant, even skinny people. that could be a part of the problem. I've been checked for hemochromotosis (too much iron in the blood) This can damage the liver and the treatment for it is no red meat, beer or alchol and milk thistle. My friend, that I spoke of earlier, has this conditiion. It does run in my family, but I don't have it. Thank Goodness!!!!

Anything we take into our bodies, unless it's transdermal (through the skin) has to processed through the liver. There is the potential for damage there. I know hormones can affect the liver and I know pain meds (especially Tylenol) can affect the liver. So, it would stand to reason that SSRI and SNRI could potentially affect the liver. I wonder if they've ever done testing to see how much meds can cause a fatty liver or damage. That's why I use the Milk Thistle, it helps your liver regenerate and helps it to detox better. A friend of mine who has an illness that causes liver damage, this is his main plan for repair and protection of his liver. He's doing well with it.

I have to agree with the Trader Joes Green Tea. I like the regular one also. We make it by the gallon and only add about 1/8 cup of organic sugar for the whole gallon. It's not at all bitter and it doesn't give you the jitters.

My husband and a few friends, can look at me and tell what's going on. My husband is so tuned in that he can tell before me when I'm going to have a hot flash. I think we all talk to ourselves. We have to be our own cheerleader. For some, all they/we have are ourselves. I think it's a healthy thing. Besides "we get the answers we want". RAH!RAH!RAH! WE CAN DO IT!!!!!!!! Sounds like you had a bit of a panic attack in the store. I do that allot too. Part of it are the lights in the store. Try your sunglasses. They are a fashion statement, you know. It might help you get through the experience. Try getting your knees up to your chest, by squatting or sit in a chair and bend over and tie your shoe. Sometimes that will help the panic feel to get better. Then sit there and take a few deep breathes, look around you and realize you're okay and you can do it!!! It's part of the things we have to learn to deal with.

I tried them, but lasted maybe an hour on them. Since I have blood pooling in my legs and feet, it wasn't good for me. Now I do use a wedge and add additional pillows on top. I've found the wedge to be very helpful. I'm sleeping through the night and not waking myself up to get my heart rate up. I do have apena and have to use a CPAP, and find that I'm tolerating that better too.

As far as the electrolyte problem. My husband got really sick and over hot. He had been drinking water continuously. We went to the doctor and he was told he had diluted his electrolytes (minerals) by too much water. He was told to get a big Gatorade, but not to guzzle it. He was to sip it throughout the day and continue to drink water. It keeps the minerals in your body and helps you to uptake the water into your cells. He has done this and is doing fine now.

Thank you for your support. Life has been a struggle. But, at least now, I know what I'm dealing with. I was so happy to FIANALLY get the POTS and EDS diagnosis. It made everything --make sense. I know there are some finer details that I need clarified, but just knowing what everything has been about all my life, is such a relief. I do believe the Mast Cell may play a part. I think my mom has this issue too. I feel like allot of the componenets of these illnesses are gentic in nature. I want to get the Zyrtec and whatever else you do to treat for the mast cell and just see if it makes a difference. How do you start out?

Yes, I have fatty liver also. I also have a tumor on my liver that I was told was caused by hormones. I was using the transdermal, natural hormones, but only occasionally. I don't feel like I was using them enough to cause the tumor of which they said was caused by hormones. Since I had a complete hysterectomy at age 36 and I'm now 50. That just doesn't make sense to me. I also have a tumor on a kidney, my thyroid and brain. I think, from what I'm reading, tumors can go along with POTS. I am overweight, but don't believe the liver issue is related. I don't drink either and I do support my liver with Milk Thistle. For some reason, though, Mayo wasn't too happy with my use of Milk Thistle. I feel like it's possibly kept my liver from getting worse. I was told when I was 23 that my liver wasn't detoxing properly. This has to go along with the POTS. I'm not sure how--but there must be a connection. How do we find out if an autoimmune issue is involved?

I got to thinking, if there is something wrong with the kidneys. They don't want you to use allot of salt, because the kidneys can't excrete it properly. Did they do blood work on you to make sure the function was okay?

Yes. Dark urine and heavy urine indicates dehydration. Maybe your electrolytes are out of balance from too much water. You can deplete them from diluting your minerals. Try an electrolyte drink, see it you feel better. Keep us posted. Will be interested to find out what you learn.

Sounds like an episode!! Pretty scarry, isn't it. I agree, since it is new for you--call your doctor. The numbness should probably be looked at. Were you gripping the wheel tightly, and did you have your arms up higher than normal? You possibly could have brought it on by the position of your arms. I can't do anything with my arms too high, it will bring on symptoms for me. Just trying to think of what could have brought it on.

Futurehope, Hey there's a good Wild Animal Park, here in Phoenix too. It's out west of town. They raise animals for the zoo's. It's not very big, but we like it. Haven't been to the one in Tuscon. What's it like? It's supposed to almost make the triple digits by the weekend. So be prepared. Have fun. You can definitly use your bathing suit.

I've learned that even some times the people who act like they care, don't. You truelly find out who your friends are. Since I've had my broken foot, it has surprised me who is there for you and who isn't. There has been so many times that I've said, "I just wish I had purple polka dots". People would then know something was wrong. A friend and I were discussing this. We both learned ---be careful what you wish for. I got vitiligo. White spots all over me, I'm losing my skin pigment color and she got psoriosis. Neither one of us really wanted "spots". When your body starts to give up, sometimes it just does. We all are facing the fact that not only do our friends and family, not understand. But, there are some pretty unkind and unknowing doctors out there too. Maybe some day, this will be more understood and taken seriously--like other illnesses that have been in the same catagory in the past. We just have to be patient and try to remember most people are just ignorant of our illness. Try to overlook it and keep pressing forward.

Me too!!!!! I have to wear sunglasses inside sometimes if there is florescent light. It makes me real dizzy and naseaueous. My husband says it's because there is a faint flicker to these types of lights. Most people aren't aware of the flicker, but super sensitive people (like us) are. We had to change out our lights at home because they made me sick. As far as the sparkles, I was told that this is a silent miagraine. A miagraine without the pain. The silvery stars are this. I do have the black floaters at times too. I read what that was, but can't remember. I think everyone has them at times. Unless there are a whole lot of them at once (which could be indicative of a detached retina) I don't remember that it is dangereous.

I too have allot of allergies. I've recently been reading about Mast Cell Activation Disorders. It causes a histamine reaction, like an allergy. Many people use different types of allergy medicines for this. I had been using large amounts of Quercetin to suppress this histamine release and ran out. Now, I'm having allergies to everything I'm trying to eat. As for the antibiotics that caused the colitis. I was on antibiotics for several months for a chronic urinary tract infection that wouldn't go away. (Fresh Parsley tea is the best thing for this.) Then I started having appendix symptoms. Because I didn't have insurance, they wouldn't operate on me. My appendix ruptured and they then gave me massive antibiotics IV. At the same time I got pneumonia. Then because of the IV antibiotics (which in one way probably saved my life) I got the colitis. Long story, short-----I didn't get surgery for the ruptured appendix until 2 years later. At that time the damage was so severe that my chances of getting pregnant were slim to none. Also, at that time they found endometrosis. I was only 23 when all this happened. I wanted Kids. Finally after so many clean ups for scar tissue and endometrosis ---my 8th and final surgery (I hope) was a complete hysterectomy. No Kids!!! As far as the colitis, that was the most painful and horrible thing of this whole episode. I had to come up with $1,000 to have a colonoscopy. My husband was employed only off and on and I didn't have insurance. Somehow, my husband got a night job and they prepaid him $1,000 and I had my test money. When I had the test done, I was 5 days into a nightmare. The doctor said that I should be dead. Most people die within 2 days of having it as bad as I had it. In his career it was the worst he'd seen. So, I did oral chemo. The pills were $100 each. The first RX didn't stop it. He said we could try one more RX of the same kind and if that didn't work, the pills would be $500. We had no money. The job my husband got, was a blessing for us. He gave them a bid for what those expenses would be and they agreed to his price. The second RX stopped the colitis. I had to be with someone the whole time I was on this medicine. Because (against my knowledge---my husband didn't tell me til later), the medicine could have killed me. Given me a heart attack. I survived through it all. I think the trauma that I went through and some childhood illness that was unexplained, is what caused my POTS. I've had these symptoms for a long time and been searching for answers. As for anitibiotics, I avoid them. I have to be really sick to use them. I do use the olive leaf or collidiol silver and I believe in apple cider vinegar. These and probiotics are my first line of defense. You see why I don't trust doctors and feel I have to educate myself and look after myself. I've had near death experiences, more than once. I feel like its up to me to be my own advocate. I had no help when I was younger and didn't know what to do. I've suffered all my life for ignorance. I'm trying to never let that happen again.

I'm not Reen, but I do like the new design with the wording underneath. I think it is real self explanatory and leaves little to wonder. This one is good.

Tearose, So, what do you do to manage your POTS, if RX's aren't in the picture? I too, am not a fan of prescription drugs. Of course, you are aware of some of my past histories with antibiotics (from another post). Right now, I'm just upping my salt, using Emergen C and compression garments. I do have to use a pain pill and muscle relxr, due to the broken foot and leg and the severe Fibromylgia and osteoarthritis. Hoping to be able to cut them down soon. Foot is doing better, now. But, other than that and an occasional naseau pill. I do vitamins and herbs and some hemopathy Not really functioning too well, but still living. Would love to find other answers. Didn't do well on 3 different beta blockers or Florinef. Tried Topamax too ---not good. Tried dopamine and Lexapro --used things for Parkinson's. These made me allot worse. The first diagnosis I got was Parkinson's--that's not what it was. Those medicines made me allot worse. Too bad your friend didn't figure that out sooner. I'm so glad I got off those meds. Then the doctor thought I had Multiple System Atrophy, that's when I went to Mayo and got the POTS diagnosis. I feel like I finally have the right diagnosis, but not fully the complete pictrue. Still need more test to narrow down the type, reason etc. I also have Ehlers Danlos. So......back to my question, what do you do?

I think what happens when we do this is our BP drops. Our heart starts beating fast to bring it up and we jolt ourselves awake to get the BP up. Just a guess, but I think that's what happens to me.

I'm no expert on this subject but I have to comment on this because of my past history. Antibiotics, to my knowledge, are not for inflammation. NSAIDS are for that. Because of being given too many antibiotics, I developed ulcerative colitis. This is severe ulcers, bleeding and inflamation of the colon. I had to go to the bathroom every 5 minutes and it became the dry heaves (only in the opposite end.) The doctor said that most people die within 2 days of having it as bad as I did. It causes a severe imbalance of the intestional flora (good bacterria). When this happened due to the antibiotics, I had to do chemo therapy twice, to kill all the bad bacteria that the antibiotics caused. I nearly DIED. LITERALLY!!!!!!! It took me years to get the good bacteria balanced and to heal up my colon. I had terrible cramping and spasms and that lasted for years. It scares me that someone would stay on antibiotics thinking they are helping themselves. In my case ---everything got worse. One way to get the good bacteria back is the probiotics. Also Kefeir is easy to drink and taste good. Normally, for antibiotics to work, you wouldn't take them at the same time as the probiotics. You could try Collidol Silver, it's supposed to kill bad bacteria. This is controversal though. I know someone who swears they are still alive when issued a death sentence to cancer. But, then there is that guy who turned BLUE from it too. I hope you really consider what happened to me. Antibiotics aren't always the answer. When you really need them for a life threatening situation, you may have made yourself resistant and then they won't work. One other thing I've read and heard about is -- Olive Leaf. It is supposed to be a natural antibiotic and has cured malaria when antibiotics haven't. Maybe this might be a better choice.

I Second the......MSG!

As for hot dogs ----ummmmmmm!!!!! I have found one that doesn't have nitrates, it's Hebrew National. I think they taste great. If you're from Colorado. They are what the Colorado Rocky Dogs are made of (at the baseball park). Mustard, Ketchup, Dill Relish and Kraut. Now I'm hungry. Think I'll go get some. By the way, nitrates do bother me. They are really bad in wines. I've not found but a few wines that don't bother me. Grapes are real high naturally in nitrates. Dr. OZ had that grapes will cause a histimine reaction. So, maybe it is the nitrates that creates this histimine reaction and so therefore, allergies are the problem. Sounds reasonable. Right?

Ginger capsules helps me with the naseau. Also, if it's bad Phenegan, 1/2 tab.

Garrett, I don't know what your symptoms mean. But, don't mess around with your vision. You should go in to an opthamologist as soon as possible. I have blurred vision at times with the POTS, but haven't noticed dilation. Sometimes I even see double and can't read the TV (guide). I also feel like I have pressure behind my eyes. I recently found out that I have Ehlers Danlos and that can affect your eye pressure and vision. It also goes along with the POTS. BE SAFE with your vision, that's one of your most important senses.

Thanks for all the information!!! Sounds like something to try, the Florineff gave me headaches and raised my BP too much.

Hi Tara, I think you will like this site. I've learned so much myself in a short time. I too, agree with Simmy --it sounds like my story. I think you've figured out what is wrong with you. Getting the pieces of the puzzle put together is so uplifting and encouraging. Then you can know what to treat. I can't give you advice about your med's, you have to make that decision. I don't think you have time to tamper down to get off them though. You don't want to go cold turkey. That will throw you for a loop. Maybe you should call your doctor and bring up your concerns with him. Tell him what you are thinking and that you want a good baseline to start with. Maybe he will delay the test. (Just thinking out loud.) Hope you get your answers!!!!