dawn

Denied twice. Have a lawyer. They requested a hearing date before the judge last October. STILL WAITING Dawn

I have had tachycardia all my life. When I was working in a clinic about 10 years ago my heartrate was 170-180 all day long, I was soooooooooooooo tired. I would have all the doctors check it, they would hook me up and it was always sinus rhythm. I was finally so exhausted I went to the hospital where they suggested I walk more. In tears I begged for a beta blocker. I take Inderal 10mg 3-4 times a day, if I get an episode like you, I just take an extra one with a Xanax until it passes. I know it is uncomfortable but as long as it is a sinus rhythm you should be OK. We tend to become afraid and then it gets faster. I guess I am just used to it now. I have this startle reflex and if someone comes in the door unexpected or the dogs bark when I'm half asleep my heart goes crazy fast. Best of luck Dawn.

Morgan, What next????????????? I get on the protein powder routine sometimes. I use orange juice and ice cubes mixed with the protein powder in the blender. When I was working I would come home at lunch and whip one up while I let the dogs out. I can't do milk products. Think of you often. God Bless Dawn

NAUSEA Dawn

Have you ever worn a holter monitor or had an event monitor? I have these episodes, my heart goes into a rhythm called SVT. It stands for supraventicular tachycardia. The rate stays at about 180, I feel short of breath and tingly. They told me not to worry about it. It is common to become short of breath when our hearts are beating hard. I would ask for a 30 day event monitor and try to catch the rhythm and have it checked by a cardiologist. Just plain old sinus tachycardia can make me feel the same way. I know it is scary but unlikely your heart will stop. Did you try coughing or bearing down, that will sometimes make it stop. What works best for me is chugging ice water. Good Luck Dawn

Thank you for the encouraging post. This morning I just said to my husband I need to dig out my exercise machine for my legs. I have really been lax about exercise and it is time to change that. Your post came at the perfect time. I'm glad you are doing so much better. Dawn

Tammy, Do you take any meds at all? I have Xanax which helps and started Celexa 6 weeks ago that is helping. I know how you feel as I have had them for years. My counselor says just "ride the wave." I have learned to go my "safe place." You just pick a place or situation that makes you feel relaxed in your mind and go there. Don't fight the feeling of the rush, just acknowledge it, it is real, then focus on something else. I usually dress in layers. Today it is 85 degrees and I am wearing polar fleece off and on all day. I also pray, I tell the symptoms I am having to go under the feet of Jesus Christ. Hugs Dawn

Mine is all over the place too. Mayo doctor wrote a diagnosis of labile blood pressure. My first tilt table I was hypotensive. My second tilt table a doctor walked in and said "Oh, you are hypertensive." I just stopped checking it. Dawn

I have the same problem. My doctor said no laxatives because they will dehydrate me even more. If I havent' went for a couple days 2 tablespoons of maalox does the trick. Helps with the nausea too. Good Luck, Dawn

YUP. My neurologist said it takes awhile for our bodies to adjust to being up (gravity). When they ask if I have any allergies I always say "gravity." He recommends sleeping with your bed on an incline, 6" blocks under the head of the bed. I have tried, but end up waking up curled up at the foot of the bed. I have accepted that in the morning I do nothing but walk around a little. Drink a cup or 2 of coffee. Lay on the floor with my feet up on the couch. I make all my appointments for afternoon I start to feel good about 10:00 PM when it's time for bed. Dawn

Sorry, but my experience was also negative. I took 20mg (the lowest dose). I got such stomach pain and nausea. I tried it for 3 days but the stomach pain was too much. I have friends (without POTS) who love it, take 60mg a day with NO side effects at all. I have been taking Celexa for 5 weeks, I am only taking 5mg and notice a difference. I have tried 10mg but got anxiety so will wait another week and try to increase. Dawn

Jan, I will continue to pray for you and Jeff. It sounds like you two are soulmates. Enjoy every moment you are together. Hugs Dawn

Sara, I saw a physician at the Marshfield Clinic last year who specialized in dysautonomia. He was leaving and going to Milwaukee. I can't remember his name, I want to say Dr. Heimer???????????????? If you call Marshfield Clinic I'm sure they would give you his new location. He was knowledgable. Did a tilt table and I was happy with his evaluation. Good Luck Dawn Sara, PS- He is a neurologist. As is Dr Low who I see at Mayo. The cardiologists are so eager to do an ablation. I avoid them and stick with an internist and a neurologist. Dawn

Inderal, which is a beta blocker helps. It's a beta blocker that crosses the blood brain barrier so it helps with the surges. Sometimes it takes getting used to as it makes you tired. I am on 10 mg 4 times a day. Good Luck Dawn

I hear you!!!!!!!!!!!!!!!!! So many times my husband will say, "you are looking good today." An hour later he'll say "you're going downhill aren't you?" It's so frustrating I think I am going shopping, well by the time I'm ready to go I collapse and take a nap. A shower wears me out. The symptoms come and go, my husband refers to them as "the spinner card." I sympathize with you going to work, I just can no longer do it. I went for years sicker than a dog. I try not to complain or focus on my symptoms but usually get frustrated and angry after holding it in then everyone hears about how awful I feel. Hang in there, you are not alone. Dawn

I think most of us deal with depression. I was diagnosed with situational depression & anxiety when I could no longer work. I can relate to what you say, I have offered my life to God on many occasions. Working as a school nurse and caring for a 5 year old who had an inoperable brain tumor, I would talk to God and say that I have had 50 years, my children are raised with the exception of my 16 year old. Let her have a miracle healing and take me. But......... It is not up to us. Being of different religions (though my husband is Buddist) I am Christian. Without turning this illness over to God I couldn't do it. We all need to find what comforts us and makes us keep putting one foot in front of the other. Remember somedays are just so much worse than others. It will get better, when you feel so low it can only get better. If you are like my husband you may believe in Karma, he accepts whatever happens as something that he is paying for in this life from something he did in a past life and that no matter how bad it seems he is actually moving forward. He had melanoma several years ago. I won't get into a post on religion, but last summer I did see someone who helped me and I accepted God as my Lord and Savior in my heart and not just my head. Don't get me wrong I still struggle, I get frustrated, I get depressed. But I feel like God is there to listen. I wish you all the best- Dawn

Wishing you a day that is filled with energy, love and good cake. Happy Birthday and many more to come. Big Hugs- Dawn

It sounds like a nightmare for you. I hope the trip goes well. I guess we are spoiled living in Wisconsin, the winters are awful and the summers are humid but the health care is good. I can't believe they didn't admit him. If you walk in and say you have chest pain here, you are automatically admited for at least 24 hours. I think the zigzag recording you are talking about is artifact, it happens anytime you move because the electrodes move with your skin and are not recording. I am concerned about the spot on his lung, the weight loss and the low BP. I think he needs a good internist that looks at the whole picture. For me it is so hard to imagine that kind of healthcare. I don't know what I would do. Is there a University Hospital near you? They are usually pretty good. Wish all the best to you and your family. Dawn

Sorry to be cynical, but nothing positive has come from this disease, nor has there been a "best thing I've gotten." I am usually not a negative person, but this has destroyed me, my job, my family, my friendships, my financial state, my freedom, my independence, my sleep, my appetite, my ability to drive, my desire for anything. NOTHING good has come from this illness period! Dawn

I HEAR YOU !!!!!!!!!!!!! I was just saying those same kind of things last week. I"m not a person with a jealous or envious nature but was finding myself feeling that way as people talked with me about all that is going on in their lives. I'm really jealous of the fact that they sleep and wake up feeling good. I am to the point where I dread going to bed because I don't want to do the morning thing again. My sister is the worst she has no clue about POTS, is 17 years older than me and has never had a problem in her entire life!!!!!!!!!!!!!!!!!!! Feels great, runs around like a 20 year old, perfect kids, perfect grandkids, beautiful house, same husband forever, no money worries. Don't feel alone. I do talk to a counselor, it helps a little. Sometimes I tap into my anger and just go do whatever it is I want to do, I force myself, sometimes I do OK, sometimes not and the down side is I pay for a couple days after. I wish I had an answer for you or some great words of wisdom. I have made the mistake of isolating myself and becoming bitter at times not a good choice. I guess what keeps me going is my faith and telling myself that someday I will understand why I was CHOSEN to have this condition. It is way beyond what I can understand now. Hugs- Dawn

It took me about 2 weeks to feel well enough to be up and around. I couldn't return to work for 4 weeks because I was so tired and my abdomen was so bruised and sore. It was also swollen for a loooong time. I had problems with diarrhea too at first and now have "dumping syndrome" on occasion where you have diarrhea many times a day and alot of the time it's just bright yellow bile. It's been 5 years and I still occasionally get pain where my gallbladder was and it radiates to my back. We are all so different, the nurse I worked with had her surgery on Friday and was back to work feeling fine on Monday. I think it's normal to feel tired as the day goes on, it takes alot out of us to have surgery. Good luck! Dawn

When my BP is low I always get a horrible frontal headache. Most of the time my heart works very hard and fast to try to bring my pressure up. I am really sensitive to tachycardia, when I stand it goes up 40-50 beats. I often feel faint and just quick lay down on the floor and put my feet up on the couch and deep breathe for 30 to 40 minutes, it usually works. I also have more of these episodes when I haven't drank enough. I'll chug 24 ounces of gatorade and sometimes that will straighten everything out. Wishing you the best Dawn

Hi, I was lying in bed last night looking at my husband asleep and realize how far we have drifted apart. When I was functional and "had a life" things were so different. He is faithful and caring but I know he is as sick of this illness as I am. I feel guilty that I have no desire to be intimate with him. He is my caretaker and I find it really depressing. He has become my safety net and the only one who truly understands how sick I feel. I was always the one who cared for everyone and with the shoe on the other foot I am having such a struggle accepting it. How do you all maintain a relationship when you are so dependent on your partner? My friends are understaanding and supportive but I always feel uncomfortable being sick around them. I guess I feel embarrassed being sick. Does that make sense? Dawn

Since I have started a low dose of celexa I have been able to decrease my Inderal from 4 times a day to 3 times a day. I have noticed before when on an SSRI my heartrate slows down. I've never been able to get off of beta blockers, I would have so much tachycardia and SVT if I tried. Good Luck Dawn

Not while yawning or stretching, but when I laugh or sing I do. We are just weird. Dawn