dawn

I tried the buffered ones, but my tummy wouldn't take it. I eat olives and I have aquired a taste for a cold glass of coke with a teaspoon of salt in it. My stomach is so sensitive to everything. One Christmas, my co-workers bought me a salt block (lick) like cows or deer have as a gift. LOL. Miss those days. Dawn

I can only use Benadryl. Everything else makes me tachy. Most times I even skip the benadryl and just rub vicks on my chest and throat and put on a warm shirt I actually love the smell and my chest gets soooooooooo warm. Good Luck Dawn

I get very clammy with anxiety which is a normal response. I lay down and do breathing exercises. The best books about panic and anxiety were written by Claire Weeks. If you can find them and read them they helped me the most. After 20 years I am pretty much used to the panic, I used to call 911 or my husband, thinking for sure I was going to die. I am not saying it easy to ignore those awful feelings but I do not give the symptoms the power that I used to. I do take Xanax 0.5mg when my adrenaline level is so high. A low dose SSRI often helps the surges of adrenaline ALOT. I take 5mg of Celexa and it has made a big difference. Sometimes I even forget to take the Xanax. We are all so different about which meds work. Talking with a counselor who specializes in anxiety is something that helps alot too. They can walk you through a panic attack and give you the tools that you need to learn to get you through. Dawn

Kaye, You are not wimpy. I too was very active before this illness. Even after all these years (almost 20), I still think I can do things I used to do. When we overdo, we pay the price. This has finally sunk in. Before even thinking about mowing I would drink about half gallon of gatorade and a couple teaspoons of salt. If it was hot, that really seems to trigger symptoms. You really need to pace yourself. I know how hard that is. I lay in bed at night and think about painting walls, laying a wood floor, painting the deck. In my head I can do it, physically I cannot. It's hard to not get frustrated, but the sooner you accept that some things need to be done by someone else, the better. Take it easy and take care of yourself. Dawn

I had a terrible reaction to CT contrast which is iodine based. Absolutely no reaction to MRI contrast. The MRI contrast is totally different and they rarely see and allergic to it. I had them pull me out of the MRI and sit while they gave me the contrast. They only do it for the last picture usually. Hope this puts you at ease. Dawn

Doctorquest, Thank you for joining the forum. It is so kind of you to take an interest in us-this condition is so frustrating. It is very hard to find a physician who takes us seriously. Mayo Clinic is good at giving a diagnosis, but then they do not follow up with us. I am fortunate to have an internist who has followed me since I became ill 13 years ago. Once again, thank you for your interest and time. Dawn

Tessa, Can you do leg strengthening exercises? That is the best. If you are unable: I would try laying with my legs elevated for 45 minutes, while I do this I squeeze the muscles in my legs and butt and move my feet back and forth. Dr Low at Mayo, recommended that I do this twice a day. Dawn

When I was young I always fainted during menses. The only thing that helped me was birth control pills. I barely got a period and the fainting stopped. Dawn

Cardiactec, I guess I am used to passing out as I have been doing so since my early teens. It helps to lay down quickly and put your feet up when you feel it coming on. I have fainted many times without warning though too. My heartrate gets very slow also. I empathize because it is a horrible sensation. I always think "this is it" when I feel it coming, even after all these years. I wish I had an answer for you. Being labeled depressed and anxious, which I am, is not all that bad when you try to obtain disability. You are more likely to awarded social security if you do have a psych diagnosis. We all know we are not crazy but the medical system doesn't know what to do with us. I am even labeled somatozation(?sp) disorder which really makes me look like a kook, but I do not care. I know how bad I feel. I do take a low dose of celexa and feel better. I have been off and on SSRI's over the years. My only advice is don't let the fainting incident become to big a focus in your life, people faint. If we think about it too much we become housebound (I speak from experience). I let fear rule my life for a long time. I wish you all the best. Dawn

HI, I saw a cardiologist last year, they could be twins. Never listened to my heart or lungs. Said I don't know anything about POTS, "I declare ignorance." What a waste of $400.00. All he was concerned about was my elevated cholestrol. I was furious when I left. I have learned to just be as condesending to them as they are to me. I have alot more luck with an internist. Dawn

Hi, I received this on my email this morning: Medscape Drug Alert Medscape from WebMD Marketing of Zelnorm Suspended; Drug Linked to Slight Increase in CV Events Marketing of Zelnorm Suspended; Drug Linked to Slight Increase in CV Events Novartis, in compliance with an FDA request, has suspended marketing and sales of its irritable bowel syndrome/constipation drug Zelnorm, after an analysis of its clinical database pointed to a higher incidence of MI, stroke, and unstable angina among patients taking the drug. Dawn

Melissa, Asking God to send healing angels your way. You are in my prayers. Dawn

Living with this illness, I have found who my true friends really are. They are the one's who listen, try to understand how it feels to be me. They are compassionate and always offer to help in anyway they can. She sounds like she is only thinking about herself and not you. I know it is hard, I have lost many friends who think "just get over it." Once again, I think we find out who our true friends really are. I refuse to feel guilty that I have this illness, I will not take on guilt period! Dawn

To be honest, I don't have the energy to be bored. I am so fatigued most of the time that I just lay on the couch and think of all the things I would like to get up and do but do not have the energy to do so. When I did have more energy I did alot of scrapbooking. I really liked that and the time flew by. Dawn

I have had alot of problems with nausea. I had an endoscopy twice, with no findings. I was on protonix, zantac, prilosec etc. and still nauseated. Zofran works well but is really expensive. Since I started Celexa 10mg my nausea is gone. I went on it for anxiety. The first week it bothered my stomach and then poof the nausea was gone. It has been a year!!!!!!!!!!! Knock on wood. I have no idea why as I have been on SSRI's before, prozac, effexor and lexopro and they did nothing for the nausea. Dawn

I also have high cholesterol. It is genetic. When I hit age 48 (3 years ago) my doctor insisted I take a statin. I had tried Niacin, garlic, no fat in my diet, omega 3 supplements etc. I tried zocor and lipitor which both gave me GI problems. I have found that lovastatin works well for me. No side effects. My liver function tests have been fine. I'm on 20 mg daily. My total cholesterol went from 301 to 185 in 6 months. My LDL and HDL are normal as well as my triglycerides now. So far, so good. We are all so different. It's hard to know what to do. Dawn

Hi, I used the Climara patch for several years. I also went into menopause around your age, they had left 1 ovary which worked for awhile. My doctor was concerned about blood clots as I don't do much. I stopped it about 4 years ago and have ALOT of hot flashes and hormonal fluctuations. I'm sure alot of symptoms are due to this. You have to weigh the options and just go with it. Good Luck Dawn

Hi, 15 years ago, one of my first symptoms was that my left pupil would be larger than my right pupil. My left eye would feel dry. Finally when I was in the hospital for a week my doctor came in one morning and said "your pupil is alot larger on the left eye." He said the autonomic system controls the size of our pupils. I still have it all the time. I don't correlate with symptoms as I usually always feel crummy. That pupil is also more sluggish when they expose it to light. I just chalk it up to another POTS symptom. Dawn

I get them every night as I am drifting off to sleep. The goosebumps wake me. Dawn

Yes, All of our bedrooms are upstairs. I avoid going up til bedtime. My 15 year old dog and I go up together at the same pace. I figure if she can do it, I can. We look pathetic. When I get up there it is so hard to get my teeth brushed as I feel like I have run a marathon, sometimes I just sit on the bed and brush. Dawn

There are alot of medications that can cause vivid dreams. I'm not sure what medications, if any you take. Betablockers are known for this. I often dream I am running or fearful and awaken with a rapid heartrate. I take 10mg of Inderal and within half an hour I am ready to sleep again. I also have sleep apnea but couldn't tolerate a CPAP. I know my BP gets very low during the night and I think that causes my heart to beat faster to get my BP up, then the dreams start. I'm seeing my physician next Tuesday about the low BP at night because often times I feel like I am fainting as I sleep. Dawn

Thank you Jan. I searched the internet about a month ago and found that Northwestern in Chicago did the treatment you speak of. I scheduled him appointments and he had the spheres put into the tumor in the right lobe 2 weeks ago. He also has a tumor in the left lobe. I went to Chicago for a week and got home Friday. He had every test needed and will go on the transplant list tomorrow. Heart is excellent, bone scan clear, lung CT clear with the exception of one enlarged lymph node by his esophagus. They said it is not in a spot to biopsy but everyone is feeling it is not malignant. (I pray they are right). He qualifies for a cadavar liver, if he needs a liver sooner my husband will do a live donor transplant. He is still feeling well, blood work is off a bit, platelets are falling, billirubin is up as well as his AFP. He did really well with the transpheres, no side effects what so ever. It was a long week in Chicago and I'm trying to catch up. I'm going to need alot of strength when he has the transplant. I would highly recommend Northwestern in Chicago to anyone. It is wonderful hospital and clinic. Everyone is competent. Thanks again, Dawn

I had a hysterectomy 14 years ago when I was 37. They did leave 1 ovary so that I didn't need hormone replacement for about 8 years. It is the best thing I have ever had done!!!!!!!!!!!!!!!!!!!!!!!!!! It did not make my POTS symptoms worse at all. Surgery is always tricky, but I went in early and got a couple liters of saline before surgery. I always get sick from anethesia so, the first day was rough. But it was soooo worth it. Dawn

I saw my neurologist yesterday. We talked about fatigue. He said he read an article about Provigil helping POTS. He said I may get tachycardia and palpations. May have increased anxiety. It's supposed to give you more energy. I searched the old posts and didn't see many posts. Thanks for your input. Dawn

I'm so sorry. We have 2 dogs and Sammi is 16 and we will be looking at having to do the same thing. She is on prednisone everyday and is getting weaker. I can imagine what you are going through as I am trying to prepare myself for the day. I cannot imagine life without her. We love them like children (sometimes more than our children). Try to remember what a good life you gave her. Sending an angel of comfort your way. Dawn