Lizzegrl

Just read your blog post and I have to say - OMGoodness! That sounds so familiar it isn't funny. I hope you keep having forward motion! I went with two out of three in opinions and am waiting as long as I can.

I see Dr. Grubb and Dr. Karabin and was diagnosed HyperA Pots. I have the flushing quite frequently and have talked to them about it and several other symptoms. Ironically, before I was diagnosed with POTS I was already on a med regimen for allergies/asthma that included pretty much everything that is recommended for mast cell disorders.

I get one every year, along with the pneumonia shot. I can't even imagine how sick I might get if I didn't get it.

I have been on and off steriods in a wide range of doses (lately quite high) most of my life. Unfortunately, horrible headaches, hair loss, hot flashes and several other side effects are really quite common. You are not unusual in that respect.;o) I suspect that most people just don't ever connect the side effects with the medication. The severity of the symptoms depends on the dose and the length of time I take them but pretty much, unless it is an extremely low dose and a short time, they will happen.

If you ask for an apt. with Beverly Karabin, you will be seen much faster, and if she feels it is necessary she will bump up your actual apt. with Dr. Grubb. It is sort of their version of triage, because there are so many people that want to see him. That was my experience. Good luck!

Hi everyone, I could use some help. I got a St. Jude confirm device yesterday, and they were having trouble with the printers etc. to give me printed information. It was a horrible day for all involved. They also forgot to write the 800 number to transmit to on the back of the device. I've called the co. and they keep sending pages to the wrong people and won't give me a number. have recorded once, and now it won't record more, so I assume I have to transmit - but I can't get the number. Does anyone have the 800 number to call to send in my recordings? I'm having some stuff that I haven't felt in a while so I'd like to be able to send if need be. I also don't have a patient reg. card yet, since they couldn't print a temp. I got a model of the device and the device. period.

I love this thread. Thank you persephone. POTS F*ing *****. I lose my job officially next week and am waiting/praying for disability. It has robbed me of my confidence, job, looks, support of my only family, and my nephew. It may rob me of my house and independence if disability doesn't come through. I hate POTS. Deeply deeply hate it. My sis won't let me watch my nephew because I am not healthy enough. She won't talk to me much because she said she is done dealing with everyone's health issues. Mom had cancer, and sis says it ruined 10 years of her life and I'm not going to ruin more of it. She is my only family, really. My sister ***** too.

LOL, my first thought was Cry - A lot. Then I pray. ;0)

Surgical bills are generally higher than a typical hospitalization. I just paid my bill (co-pay) for a 3-day inpatient stay with ER visit, in a non-monitored bed - $9600. This included pretty much everything. A cardiac admit has been typically 1/3 higher in the past. If a surgical suite is used, tack on 3-5 grand, then aenesthsia is close to another 1000 - doctor fees alone, not drugs! Why is cardiac excluded in this plan? Just curious - is it for everyone or just as a pre-existing condition?

Steroids are not to be messed with. I have been on and off varying doses for years. Generally side effects can be slower bowel motility, anxiety, sleeplessness, bursts of energy with mood swings, and when I hit a certain level - poof - moonface, major swelling, water retention, weight gain and increased appetite. Some of them can hit out of the blue even after you have been on them a while. Never ever stop taking them cold turkey, because your body has to be allowed to ramp up its own production again. Higher doses can really impact the body in a variety of ways long term, so docs have to really weight the cost/benefits. I was recently told that my high dose levels have probably cut years off my lifespan, but since the alternative for me is likely resp. arrest, it isn't a question of lifespan, it is staying alive now! As an aside, 4 mg is a low dose in my scope of things. If you haven't seen an impact, talk to the doc about it and your side effects. Don't just stop!

I have taken it before with no problems. My mother was endstage Breast Ca and they gave it to her as well a few times and she had no issues either. I sincerely hop you don't get it!! God Luck!

I have every intention of getting both. My doctor reminds me every year to get the flu shot. I have severe uncontrolled asthma so I will be in the high risk group for the swine flu. I have never had a reaction to one and have only ever had a sore achy arm. I got the swine flu vaccine back in 76 too. I've almost died from regular flu so I don't want to deal with one that impacts me even more. btw, from what I have read, around 40 million were innoculated, and under a 1,000 were negatively impacted. Those are pretty decent odds in my book.

Dizzy, it really isn't easy, but there is a lovely sense of independence and empowerment, knowing that I manage everything in my life. It doesn't mean that I DO everything, but I do manage it. This may feel like a steep scary mountain right now, but it is something you can do! I've lived on my own for many years, and it can be done. There are so many ways to manage your life and your illness - simple things like living someplace without stairs to climb, and making friends with neighbors so they can pick up milk when they run to the store, to keeping things like dried pasta and canned goods around, so that you never are totally without food when you have a bad week. I still of course have times that are overwhelming, and very difficult, but they eventually get better and I get back on track. If you take things one step at a time, you can break things down into processes that are much easier to manage and to think about. One of my things is using a pharmacy that is in the grocery store. I make one stop, and grab a few essentials if I am really really tired. They also have a drive thru pharmacy and delivery so if things get too bad I have options. When I found my apartment, I thought about how far the walk to the door from parking is, and chose a first floor place to avoid stairs, which are very difficult for me. There are really simple things that you can do that will make it easier living on your own. It may be scary, but it will also feel great being independent again, I am willing to bet! Please, feel free to PM me. I could go on forever about how I cope with it all, but I don't want to throw too much at you at once. Liz

I also use the patch and when I first started, I had a bit more tiredness, but it got better after the first month or so. It is supposed to provide a much more steady dose so that there aren't as many ups and downs as there are with the oral. It hasn't been a miracle drug, but it has helped a bit and I'm much like bjt, in that I will take any improvement! I do find that if I don't replace it soon in time (if I forget to get a refill and am a day late) I do get a severe headache and get very tired.

Dr. Grubb is located in Toledo, Ohio. It might be worth a short drive to see him.