Jan

I expected to be denied the first try but it was still a blow when I got the denial. After filing the appeal, they sent me papers to have filled out by people who knew me so they could describe how I functioned. Talk about a boundary issue. This was hard because there are few people I am really honest with about just how hard this is. Before I even gave the paper work to friends, I got the second denial. I swear the denial came a week after they sent me the paper work. No one could have filled those out and sent them in before the denial. They had NO intention of even looking at the stuff they wanted me to have filled out. I know it is easy to say and hard to do, but don't take it personal. Even though I couldn't even sit up at the time, the first denial said I should work in a office. Go figure. You are just a piece of paper work to them. I am not even sure they read what we put or they wouldn't be able to deny us. I like to joke that the whole process is a test. If you can fill out that many forms and figure out their process, they will say you are capable of holding a job. It is a catch 22.

Hi, I am a 50 year old female and was prescribed Lipitor a couple of months ago for high cholesterol. I read about it and there is no evidence that lowering cholesterol in women who don't have heart disease has any positive effects. In fact, in one study, the women on Lipitor had 10% more heart attacks than the control group. There are numerous law suits against the company for promoting it for healthy women. (Lipitor is the only drug I looked into on the internet but it is a Statin, just like Simvastatin) There are studies that show lowering cholesterol in men who have heart disease helps. That's about it. I might have found one study on women who had heart disease that said lowering cholesterol helped, but you know how few and far between heart studies using women are. I decided not to take it. If I live to be 80 that is 30 years on an expensive drug with side effects and no known positive effects. I don't know your medical history or about the drug you are on, or if you have heart problems but if you don't have heart issues, other than tachycardia from POTS, I would discuss with your doctor if you even need the med. They minimize the side effects, but those drugs have tons of them.

Would walking in the water be OK on your feet? A lot of people at the pool I go to just walk back and forth. When I started swimming at a therapeutic pool, before I could do independent swim I had to meet with a physical therapist in the water, who asked what I wanted to work on and had a whole list of exercises a person can do in the water. I wonder if the Y has someone like that. If not, could you get a referral to a PT who knows knows about water exercises or maybe they could just print up a list of water exercises. The pool I go to has spongy type weights where you "lift" weights by putting them under water, and they have weights for your legs and floating noodles etc. There a fibro exercise groups at my pool too. I bet a PT would have water exercises designed just for that. I sure hope this works for you, I went to the pool today and feel GREAT as a result. I never overdo it, sometimes it seems like just floating resets my autonomic system.

I swim in a "theraputic pool" with warm water at a center designed for handicapped people. I swim a few laps but most of the time I paddle around on a "noodle" and then I can exercise my arms and legs without increasing my heart rate. I feel really good all day after wards, and the next day. The other advantage of being in the center vs. a gym, is the other people all have a handicap of some kind and I usually feel grateful that I have both legs and arms when I leave.

I can't swallow big pills either. I don't see any reason why you can't take 4 2.5 mg pills. When I get antibiotic capsules, I have them give me the smaller ones and take twice as many.

great way to end!!!!!

Alcohol is a vasodialater, so it can bring your blood pressure down. I know for me it drops my BP and makes me very symptomatic. So I hope everyone enjoys their holiday but is very careful.

On my third doctor visit the neurologist said to me, 3 lesions on the brain, 2 thyroid lumps, and there is nothing wrong with thee. Anyone else care to join the song?

Advil and Motrin are both Ibuprofen. My obgyn told me to start taking 3-4 pills every 4-6 hours as soon as any pain started and don't stop until the period is over. I don't do that much because eventually it hurts my stomach. Do you have to be off the pill the full 7 days. I used to only go off for 3 days, and now I am down only skipping two days. I find the less time off, the quicker I recover. I find that my headache starts 3 days after being off the pill, and will continue through day 4 and 5 and then I feel better. So hang in there, know that there is an end in sight.

I asked to be tested for food allergies when I was having swallowing problems. I was wondering if the problems were caused by something I was eating. The test came back "in normal limits" what ever that means.

I haven't worked since I got sick 8 years ago.

When I went to the Mayo, they said, yup, you have POTS, stay on the Florinef and go home. No follow up with my doctor, even when he tried to contact them. A year later I begged to be seen in the autonomic clinic where Dr. Low worked, saw a different neuro who said, yup, you have POTS. Nothing more we can do. This is such a frustrating thing to deal with.

I was under extreme stress when I "came down with" POTS. I believe stress was the trigger and often wonder if I had left my marriage years before I got sick if I would have even gotten sick.

I do the non stop pill. I go off it when I start to bleed rather than spot. I have found that if I get a "real period" now and then, I can go about 85 days with no spotting. What I do is when I start to bleed pretty hard, I go off the pill for two days, I start to get a migrane, but then it will get better when I go back on the pill. If I go off three days, I get a horrible migrane. The two days is enough to shed the lining if I am bleeding to begin with. (the period will last about a week and will occur mostly after I am back on the pill) If I go off the pill when I am just spotting, or not bleeding at all, then the two days off isn't enough to shed the lining and I end up spotting forever, until I go off and get a real period. My doctor is the one who told me to only go off for two days, that should be enough. I find spotting just a real pain, especially since I try to swim twice a week. It isn't enough to use a tampon so dealing with a panty shield in the locker room is a pain.

I was put on a tricyclic antidepressant in a low dose for dizziness before I had my POTS diagnosis. I started to black out EVERY time I stood up and stayed black for longer and longer periods of time. Finally one of the many different doctors I was seeing at the time said that they caused hypotension and took me off of them.

I think people with Addison's disease take Florinef all their lives. It isn't like Prednisone even though it is in the same class. I have been told by many different doctors it doesn't have any long term side effects like bone loss etc. I have been on .2 mg for the last 8years and it has really helped. I have to take it with food or a glass of milk or I get stomach pain.

I love the stuff with no Epi. Before I had POTS I would be puffy all day, now I am back to normal almost as soon as I get home. Yes, they do usually have to inject me a second time, and I have to tell them I can feel the pain so they can do it. I have not noticed any extra bleeding but I am not sure I would notice. I also get the nose gas...love that stuff.

Maybe you have a shy bladder. It's afraid of that container. Or you have performance anxiety. Once I had a problem with chronic diarrhea and had to give a specimen and wouldn't you know, that request was enough to cure the problem. Seriously though, are you drinking your normal amount or limiting it maybe without knowing it because you don't want to go in a cup?

Pots makes our hearts race, our blood pressure drop, we get dizzy, sweaty, feel like fainting. An anxiety attack makes our hearts race, our blood pressure drop, we get dizzy sweaty, feel like fainting. Physically the same things happen. It is no wonder you can't tell them apart. A pots attack can get worse if we get scared, because then we are having anxiety on top of it. Worrying about anxiety can bring it on. So what's a person to do? I adopted a mantra, "I am not going to faint", "I'm not going to die". I wish it was as easy as saying "don't worry". Then I got a prescription for Ativan to take as needed. When I had an "attack" I would take it and even though the symptoms were there, I could deal with them. I actually believed my mantra. If you get an anti anxiety med and it helps, you will know there is anxiety/panic involved. If it doesn't help, it is just POTS. I found having a med alert bracelet with all my info inside helped me be brave enough to go places. Good luck, the fear of anxiety can make you so anxious you can become homebound. I once read a saying, "It is only from taking risks that we become brave." Little did I know leavng the house would consitute a "risk"

Do you feel like you have tacycardia when you wake up? I used to wake up with my heart racing and sweating and now take an Ativan before bed and sleep pretty well. It seems to calm my heart rate.

I hate taking meds too but I feel like Florinef is to me, like insulin is to a diabetic. Sometimes you gotta do what you gotta do. I am just glad I have a doctor who doesn't push me to take things I don't want to. Sounds like you are lucky in that way too. I tried different amounts of Florinef from 1/2 pills to 3 a day before I found 2 a day worked best for me. I hope the 1/2 works for you but don't forget that (with your doctors knowledge) you can try different amounts until you find the one that works. I know some people who find even 1/4 pill more or less can make a difference. Good luck

The non epi meds don't last as long so be sure to let them know if you feel any pain. I have had the nose gas with no problems. Once in awhile sitting back for too long makes me light headed when I get up, just like getting up in the AM so if you may want a ride home instead of driving yourself.

I take my first dose at 7AM when I get up with my kids for school. Then I go back to bed and feel much better when I get up for the day. (sometime between 10 and noon) I take my second dose with lunch. I find that on days I have to stay up in the AM, I don't feel well until a few hours after taking the med. I also find that if I miss the second dose, around 4 or 5 PM I start to feel really "potsy". I find if I don't get enough sleep, it doesn't matter what I do, I can barely function. I have never had that happen from "too much" sleep. I honestly don't think I could get too much sleep. I just think I would wake up when I got "enough".

My dizziness sometimes gets really bad and I can't figure out why or when it will happen. Some things do increase it like not sleeping well, busy day, getting a cold, allergies, and hormonal changes. Or nothing I can put my finger on. It eventually gets better. Hope yours gets better and soon.

Midodrine gave me the worst migrane I have ever had. I ended up in ER and got a shot of demeral, which helped until it wore off. My doctor took me off the med due to the headache.