dawn

Most of the time when getting up it will drop real slow and then within about 30 seconds I will become tachy. I do get dizzy and presyncope. If it's evening and I am helping make supper after about 5 minutes of standing, I become tachy. Or shopping, I'm tachy all the time I am walking. Dawn

I think I have had POTS all of my life. Was diagnosed in my mid 30"s and am now 50. It has gotten worse not better. I was able to keep working until I was 48. The last few years of work were very difficult. I wish you the best and wish that your cardiologist was right. Don't give up hope. Dawn

I can usually tell when it is fast because I am standing and it pounds so hard. I know my BP is low because of vision changes. Occasionally it will go really fast after eating or while I'm just laying on the couch. I can feel it start and I usually get really flushed and hot. Dawn

Hi, I tried buspar a couple of summers ago, it wasn't a good medication for me. I had alot of side effects and it made me tired but I was still anxious. I take Xanax and now a low dose of Celexa. I have come to accept that no matter what the medication (I have tried most of them). I am still going to have anxiety. I avoid going out unless I have to which I know is not good. I have anxiety off and on all day long. I know your struggle. I am sooooooooooooo tired of it. Last night we were all sitting watching TV, I was on the couch with an anxiety level of 8, watching my breathing and feeling like I was going to come out of my skin. For me I think it is the worst part of POTS. Dawn

I am 50 and should have a colonoscopy. My internist said if we decide to do it, he will admit me to the hospitals for IV's while I have the prep. He said otherwise you will end up in the ER dehydrated, unconcious, and tachy anyway. Maybe ask about having IV fluids before the prep???????????? Dawn

We adopted a boy Jesse. He was in 3rd grade at the time, he is now going to be a junior in high school. We did foster care for years and did respite care for Jesse on and off. He was a special needs child (ADHD and oppositional defiant disorder). He is a very caring young man and has always understood my illness. My husband and older son are a very big part of his life. He has done very well, is now off medication, is a cross country runner, on the B honor role. I won't say it was easy-we went to ALOT of counseling appointments. Do I ever reget it? Never. Your doctor does have to fill out a physical form and on there it asks if the doctor feels that you will live long enough to raise the child. I don't think I could have adopted a baby, but there are so many children in the foster care system looking to become part of a family. There are websites in each state with available children. You can call their social worker and have them spend a weekend with you. Dawn

I've been denied twice and have been waiting for a hearing since October. I do have a lawyer. My diagnosis is POTS Innappropriate sinus tachycardia Mild cardiovagal failure Autonomic neuropathy Depression Anxiety I'm crossing my fingers. I guess to have a depression diagnosis helps. Dawn

Being alone is one of my biggest struggles. I made my husband quit his job last year. He has been home with me for the past year and now financially he has to go back to work. We cashed in his retirement and gave 1/3 of it to the government for taxes, so believe me I understand. I would have lived in a cardboard box to have him home with me last year at this time. It was a rough year for me. I am doing better now, he started by leaving for short periods and is now usually gone about 6 hours a day. I accept the fact he will be working soon. It will probably be 12 hour rotating shifts a a nuclear power plant It is the one he leaning towards because of the good health insurance. I know when he is on the night shift I will struggle. I do have a 16 year old at home and 2 dogs. I am lucky to have a girlfriend that I can call anytime of the day or night and she only lives a mile away. But, I also know how I am. I will fret over every episode of palpations and think I should call 911. I wish I had something that really worked for me that I could share with you. I do understand and don't be embarrassed. I always think if someone healthy had to be in our bodies for a month then they could give us their advice. I get so sick of my sister telling me to get a hobby You are not alone. Dawn

I take Inderal 10 mg 3-4 times daily. I tried Toprol 25 mg once and bottomed out and ended up in ER. Dawn

I get episodes of anxiety in any positon and under any circumstance. I don't refer to it as anxiety but as an adrenaline surge. A low dose of Celexa has helped me kind of even out. When I awaken in the morning I'm always filled with the adrenaline surge. Dawn

My 24 year old things that he has always had a mild case of POTS. He used to get tummy aches and vomit when he was little, especially in the heat. He has alot of tachycardia now but says it doesn't bother him much, says I'm used to it. I know I always had a high heart rate. When I had my physical for nursing school I remember my EKG heartrate was 130 and they had me see a cardiologist. That was 32 years ago. I wouldn't worry unless she is really struggling. I fainted my whole life and no one ever panicked so I didn't either. You will know when she is sick enough to take to the doctor. I wouldn't start a battery of tests unless she really has problems. It's not like there is cure. Dawn

I no longer have a sex drive at all. I haven't had an orgasm in years. Sex is something that I dread because afterwards I feel so much worse physically. It's like I have run a mile and I really don't exert myself that much. It causes problems in our marriage. Dawn

Hi, I didn't have much luck with Lexapro. I was on prozac for a couple years but gained alot of weight with that, then took effexor and gained more weight. I stopped taking SSRI's for 3 years. May 1st, I started on Celexa 5 mg which is a really small dose. I tried 10 mg and got stomach pain. I feel better than I did. I would like to increase Dawn

Greg, I give you alot of credit for keeping up the fight. I was a nurse all my life and at age 48 hit a rock wall and just could not do it anymore. The year before I missed alot of work and I know alot of people thought I was faking. We know how sick we are and that is all that matters. I was able to go on long term disability with my doctors support. I recieved 90% of my salary the past 2 years and am in the disability process. Dr Low said I could only work 4 hours day. My internist whe sees me regularly said "no more." It's time to stop. My brain and will say "push" but I got to the point it was only making me sicker. I know as a male you feel a responsibility toward your family, but if working is making you too sick and depressed to enjoy your family it's just not worth it. I was the major breadwinner of the family and know how you feel. I would check into your long term disabity policy at work. We are financially strapped at the moment as social security takes forever but I decided that is what credit cards are for and I don't care anymore about finances. Life is too short, take away everything I own, I don't care. I will go on public assistance when I have nothing. I refuse to kill myself by trying to work when I can't. Dawn

I will buy at least 3, probably a large and the rest Xlarge Dawn

Amber, I know how you feel. I am organizing a 4 day trip this weekend with friends and family. I came up with the idea on a day I was feeling good and now I can't back out and feel like crap. They call and I avoid answering the phone until I can psyche myself up to call them and sound excited. I guess we all push on, in reality much of the world has to. I try to look at those less fortunate than myself and believe me somedays it is hard to come up with blessings that I am thankful for. As far as work, don't feel guilty. You don't have to give an explanation. I used think, well it's better that they talk about me, at least they are leaving someone else alone. Guilt is just wasted energy. People pleaser also- Dawn

Shortly after I was diagnosed with POTS, I had a hysterectomy because of fibroids and constant bleeding. My ferritin level was 0 and I was so fatigued and short of breath. I was around 35 years old (I can't remember dates). Anyway it was the best thing I have ever done. They left 1 ovary and I didn't go into menopause for 7 years. When I did, I used the Climara patch to replace my estrogen for another 5 years. When I stopped using the patch a few years ago I had ALOT of hot flashes which continue (I am now 50). But, you get used to them somewhat. They are minimal compared to the POTS symptoms. Did surgery make my POTS worse- NO WAY. I felt so much better after my hysterectomy. At this point in my life the symptoms have changed, my doctor said during menopause my blood vessels would stiffen up like normal peoples and my BP would actually get higher and it has. The fatigue, nausea, bouts of tachycardia, chest pain etc. are the same. But not having to deal with PMS symptoms has been great. I have never regretted having a hysterctomy. The day after surgery was rough but I recovered as fast as a "normal" person would. We are all so different that I don't think anyone can make a statement like with menopause you will get worse or with menopause you will improve. Our systems aren't like others so there is no pat answer. It's like SSRI's help some of us, beta blockers work for some of us, florinef is the answer for others. Who knows what will make us feel better or worse. Trust your gut. When I made the decision it was like well it's worth a shot because I couldn't imagine feeling any worse. Good Luck Dawn

They sell the preggie pops at the Red Giraffe, it's a childrens clothing store. Maybe you could check online, I would think they would have a website. Dawn PS- Before I had my gallbladder out the nausea was awful, the surgeon told me to take dramamine, that it was as effective as prescription meds. it did help alot. I don't know what other meds you are on but for me with my meds it was fine. They even make a non drowsy formula.

My doctor added it to my list a couple of years ago. I sit in his office and my legs and feet are purple. (Flouresant lights make it look worse!) He says it's part of the neuropathy. I get cold hands and feet and a cold nose. Alot of times at night it feels like a cold breeze is blowing on my face. My feet are usually so cold they are numb. No suggestions: Sorry. Dawn

Can you ask your doctor for Zofran, it dissolves under your tongue and the nausea is gone. It is very expensive medication used for chemo patients- my doctor prescribes 4 tablets a month. Another thing I found were preggie pops (suckers) at the Red Giraffe that pregnant moms suck on for nausea. They are very sweet and have ginger in them. Good Luck Dawn

Niferex is a prescription iron that I took that had no side effects at all. It was a capsule I think. I took it for 2 years when my ferritin level was 0. I think it may be expensive but it was sure worth it. Shaklee also has a good iron supplement that my neice took during her pregnancy she couldn't tolerate the OTC iron because of stomach upset. She said the doctor said the shaklee product was the best supplement that wasn't prescription. Dawn

My friend is an anesthesiologist so he puts me to sleep. He won't give me versed. ( BP gets too low). When I had an endoscopy last summer, he had me take florinef 3 days prior and the morning of. Then he gave me 2 liters of saline before the procedure. I had it done in surgery and he stayed with me and gave me short acting drugs. I did fine. Woke right up and didn't remember a thing. Dawn

Extroverted for sure, still am. Dawn

Yup, have it. I was diagnosed when I was 18 and am now 50. I have bouts where it bothers and times I am pain free for years. Most doctors say don't have the surgery. One doctor I knew had it done and regrets it. Avoid chewing gum or anything chewy. I did have a mouth guard that I wore for years til I lost it. Good Luck- Dawn

I have been called twice and showed up both times. When they start asking questions, I raise my hand and say that I faint and have to lay down at intervals with my feet up and they excuse me right away. Dawn