dawn

Laura, I had to do the same thing. She did alot of cognitive testing like, count backwards by 7's from 100. Then would say 5 words then talk awhile and have me repeat the 5 words. I think it's pretty common as POTS has a neurological component. She was concerned as she thought I was depressed. I obviously "passed" as SS denied me. Good luck Dawn

Hi, I've been denied twice. I got a lawyer after my first denial. They have done everything for me since. I'm waiting for a hearing date, they filed an appeal and requested a hearing after my 2nd denial. 90% of people get turned down on their 2nd try so don't be discouraged. It is a looooooooong process. It will be 2 years in October since I first applied. I think it really helps to have a lawyer especially if you get denied and get to the hearing stage. They get my medical records and call me for an update every 2 months. I have The Shaw Group, they are nation wide, all they do is disability and many of their employees have worked for the social security administration so thay know how to word everything. Dawn

Hi, I get this often. I take an inderal and lay in bed and do breathing exercises. I usually fall back asleep within the hour. I have a wastebasket by the bed incase I start vomiting. I know it is miserable. Another symptom of POTS Dawn

Jacquie, I have nausea nearly every morning. I awaken about 5:00 am, take Zantac then go back to sleep. Usually a couple hours later when I wake up it is better. My friend just bought me some preggie pops at The Red Giraff, they used to give them to chemo patients for their nausea. I haven't tried one yet, it's usually easier to grab a zantac than suck on sucker. But I'm going to try one soon. They have ginger and lavendar in them. She bought them for a pregnant girl she works with, she eats one before getting up in the morning and hasn't vomited since. Usually the nausea goes away once I am up and have a cup of strong coffee (which is hard to get down some mornings). I've noticed I have alot more nausea when I have arrhythmia, I've had several rhythm strips and it's just a bunch of PAC's so they are not concerned. Call them a "nuisance." My BP is always low in the morning to which explains the headache. Wish I had an answer for you, Zofran works the best for me but is very expensive. If I could afford it I would take it every morning because it really works. Good Luck Dawn

Good Luck!!!!!!!!!!!!!!!! I had my gallbladder out about 5 years ago. The surgery went fine as did the recovery. Ask for Zofran before and after in your IV so you don't vomit. You will probably feel so much better when it's gone. It's not functioning just making you sick. Will be thinking good thoughts for you. Dawn

Hi, If the pain is high I would guess your gallbladder, if lower back I would agree with Sally kidney stone or infection. I was really nauseated when I had a gallstone. Best to get it checked. Dawn

Hi, I've noticed increased swelling in my ankles, first my left, now both. It is the same when I get up as when I go to bed. Is this common amoung us? I need to start wearing compression hose I think. It's not painful and I don't have any shortness of breath or other symptoms. Just curious if others have this. Dawn

Hi, I have been on prozac, effexor and lexapro in the past. They didn't seem to do anything but I did gain 40#. My doctor insisted last week that I go on an SSRI because of my depression. I tried cymbalta for a week but my pupils dilated and wouldn't constrict with light so I had to wear sunglasses and I also got bad stomach pains. So, yesterday I started Celexa(it's nice because you can break the tablets in half). He wants me on 20mg, I started on 5 mg yesterday. I have a stomachache and feel jittery. I know these side effects will go away because they did with prozac and effexor. I need you to tell me the side effects will go away and it will be worth it. I feel so hyper now I just want it out of my system. Any encouragment is appreciated. Dawn

My doctor gave me rhinocort nasal spray. It is a lifesaver. He said benadryl was ok for me to take also. Dawn

Michelle, I had an endoscopy last year. They said no versed and they would not do it in the clinic. I had to have general anesthesia in the OR. The nurse anesthesist who is a friend of mine, just kept me under with very short acting medications. I woke right up and walked to the bathroom 15 minutes after. He gave me Zofran for nausea before. He also had me take florinef for 3 before and the morning of the scope. And he gave me 2 liters of saline before the procedure and ran more in during. I think the IV fluids made a difference. I usually get really sick from general anesthesia. No surprises, all went fine. Good Luck!!!!!!!!! Dawn

Lauren, I know exactly how you feel. I made my husband quit his job last July. Now he has to go back to work and I panic at the thought of it. I see a neuropsychologist who is trying to train me to go to a safe, comforting place in my mind when I am panicky. I try. She said to visualize a time that I felt safe and peaceful and go there, ignore the symptoms I am having. What seems to help me the most is to talk on the phone, I call a friend, lay on the floor, put my feet up on the couch and belly breathe. I always tell who I am talking to that I am panicky. My husband is leaving me daily now for 1-3 hours and it is going pretty good. I don't know how it will be when he is gone 10 hours again. I try to stay positive and say affirmations over and over in my head. This is a big hurdle. I have been over it once before though and actually liked to be alone so I know it can be done. I haven't fainted for several months, the last time was in a grocery store. Try to stay ahead on your fluid intake. The minute I wake up I drink a glass of water before getting up, then I go right to the gatorade. Some days I am so nauseated it comes back up but I just keep trying. I feel for you girl, I know what you are going through. Don't let the fear "rule you." Dig in your heels!!! Good luck to you. Dawn

Hi, I recently got my CT and MRI results of my brain. They ruled out seizures but say that I have age-advanced cerebral atrophy, etiology unkown.(That was the MRI) The CT report says Moderate atrophy, unusual for the patient's age, etiology unknown. I"m taking them to another radiologist for a second opinion. All I can think of is Alzheimer's on top of all this. I turned 50 this year. Wondering if anyone has had an MRI showing atrophy(which means your brain is shrinking). My doctor wasn't concerned with the CT scan but was with the MRI. He said don''t panic, we'll have it read by a radiologist that I would say is the best and we'll go from there. Another thing to worry about. Thanks for any input. Dawn I had an MRI a year ago that was normal.

Hi, I think they make inderal in a long acting capsule meaning it is slowly release over a 24 hour period. I used to take 20mg three times a day. I now take 10mg 4-5 times a day. The advantage of a slow release capsule is you shouldn't get any breakthrough tachycardia. If your BP is Ok I wouldn't worry. 60mg isn't really that big a dose, people take up to 180mg a day for hypertension. Do you get tachycardia during the night? That might be why he gave you the long acting capsule. 60 mg is the lowest dose the long acting capsule comes in. If it makes you uncomfortable to try it just call your doctor and ask him for 10mg tablets to try first to see how much it slows down your heart. Good Luck, Dawn

HI, I know how discouraging it is to be denied. I have been denied twice (90%) get denied the 2nd time my lawyer said. I am now waiting for a hearing date with the judge. They said it will take about a year!!!!!!!!!!!!!!!!!!! I know about the ffinancial concerns, I have been lucky because my job pays me for 2 years 90% of my salary. I will not be getting paid after May. Luckily they continue to pay my health insurance til February. My file for SS went to the judge for appeal in October, in March when my lawyer checked no one had even looked at it yer. Hang in there. Dawn

The first time I tried prozac it worked for about 2 years I think. I recently tried Cymbalta but that didn't work out for me. I don't know your age, the estrogen (climara) patch helped me the most. I had a hysterctomy whe I was 39. He made me quit the patch at 48 and I have felt alot worse since. I know the stress of nursing, I had to give up almost 2 years ago. I am in the process of xocial security disability. Turned down twice, now waiting for a hearing. What are your worst symptoms? Mine was tachycardia so the beta blocker made a world of difference. I take Inderal 10 mg 4-5 times a day. If your dose is too high it really makes you feel tired. Good Luck Dawn

Laura, I was diagnosed 14 years ago, I think I have always had POTS. I just tolerated better when I was younger. Mayo doctor's thought I would improve with menopause. This was not the case. I am 50 and have been getting progressivly worse. I was optomistic. I now just take one day at a time. I got very depressed when had to give up my job as a school nurse 2 years ago. I have felt kind of lost ever since. I worked as long as I possibly could. My internist said you are going to be one of those little old ladies who faint all the time. I have tried every medication my doctor could think of. It's hard to accept this is how I feel because as my husband says "You just don't have the personality for this." WHATCA GONNA DO!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!1 Dawn

I never take my bracelet off. It says my name, autonomic neuropathy, beta blocker, and the name of the hospital to take me to. Dawn

]Kate, Wishing you luck tomorrow. I remember last summer, my nephew was getting married. I got everyone in the house ready(clothes ironed, found ties and dress socks etc.) Well, my turn, I took a shower, stood in front of the mirror to put on makeup and passed out. My son pluncked me in bed. Woke up 3 hours later. Never made it to the wedding I can't tell you how many times something like this has happened in the past 15 years. Some family members never get it. I sent the pamplet on dysautonomia to all my friends and family in their Christmas cards :rolleyes. Happy Easter. Dawn

Hi, I haven't driven for almost 2 years. Alot of it is due to anxiety, which leads to tachycardia, which leads to near syncope. My heartrate hit 206 the last time I drove and that was with a beta blocker in me. My goal is to start again this summer by just driving short distances and talking to someone on the cell phone as I start. I will not accept this any longer!!!!!!!!!!!!!!! Dawn

Melissa, Sending hugs and prayers to you Dawn

Hi, I know from experience it's really important to stay hydrated. Lots and lots of gatorade. I notice that I am more short of breath with the altitude change. Normal healthy people sometimes are also. I also have more arrhythmias. I'm not a fan of the mountain. We're all different though so who knows. Good Luck, Dawn

I was a smoker from age 16 til age 32 when my son in kindergarten was afraid I would die. I was never a heavy smoker so I threw the pack in the trash and that was that. My POTS symptoms increased over the years, more fainting as was the case when I was 14 years old. I couldn't have a bowel movement without a laxative or enema. My food would not move from my stomach. 8 years later my physician said "What did you do when you were young and felt faint?", I said "smoke." He said nicotine is powerful vasoconstrictor and that my vessels are always wide open, that's why my BP is always so low and all the venous pooling in my legs. I tried the gum, tried the patch. Both made me sick. I bought a pack of cigarrettes and put them on the counter. Walked by them for a week. One day I was feeling faint and opened the pack and smoked one. It made me nauseated but the tunnel vision left and I felt better. I now smoke about 3-4 cigarettes a day. I buy american spirit, which aren' t supposed to have additives. 2 everymorning and I have a bowel movement. Feeling faint it raises my BP 20 points. As a nurse I know the chances I am taking but at this point of my illness, when I dread even waking up to face another day of symptoms the risk is well worth it to me. I am not a fan of fainting and this prevents it. Midodrine made my Bp so erratic and the side effects were horrible. Dr. Low took me off florinef because I can't maintain enough sodium in my urine. I'm not encouraging anyone to smoke. It is a personal choice that can have serious consequences. It's a choice I gave alot of thought about. I have quit for a week several times and each time the same symptoms reappear. For me it works. Dawn

Klonopin 1 mg at bedtime works the best for me. The SSRI's prevent us from getting the REM sleep and that is what we need!!!!!!!! On my sleep strudy I would have like 3-5 min of REM sleep. That's when I went off the SSRI's, the pulmonary doc said that would be the only way to get the sleep I needed. Now I sleep but have increased anxiety. Trade one problem for another. It's a cycle. Good Luck Dawn

My niece is anemic and was having problems tolerating iron. I told her to get prescription nifrex, which I tolerated really well when my ferritan was low. She is having good luck with the iron supplement made by shaklee. Her doctor also commented that the shaklee iron is absorbed much better. Good Luck Dawn

Thanks for sharing the photos. Morgan, you look beautiful. The girls are dolls. Is that your mother in the picture? Hubby looks so happy. Dawn