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.

It was the same for me. It wasn't called POTS way back then, but middle school and the first year or two of high school were really the worst I ever felt with the POTS. After about 17, it slowly got better with proper management and beta blockers. When I hit me early 20s I stabilized for 15 years or so and had a very very normal life. Your son's normal may not be quite the same as the average teen, but When the docs decided I was stable enough, at 15, I went on a school trip to Paris, I started exercising a bit, and I did the goofy teenage things! Not constantly, and I had down periods, but it did get better and better. I do think that being allowed to test my personal limits and let me try things out is something my mom did correctly. We knew there were risks, and that some dreams I wasn't going to probably get to live out, but my mom let me try! If she hadn't, I would never have had the best 10-year period of my life. I wanted to see if I could have a career in one area, and much to everyone's surprise, I could, for ten years and I did. I met the best friends I could ever have, I had the most wonderful experiences and I grew enormously as a person. Did I get to do it forever? No. I had to change careers when it became too much for my body to handle, but I would never ever trade that time. It is amazing how strong and resilient kids really are, and being diagnosed with a chronic illness isn't the end of his world. It is a change, a re-framing in some ways, but every single hill he conquers will make him stronger, and teach him lessons many people never have the chance to learn. Do your grieving, it is natural, but don't ever count him out. He will take your lead on this. If you are strong and believe he can do it, so will he. And with encouragement and faith, who knows, he could grow up to be the Bill Gates of his generation. Or he could be the one to follow in Dr. Grubb's footsteps and figure this all out. Or he could be a really kick butt firefighter or paramedic. It really is possible. ;0)

I take zyrtec every day and benadryl at night too when the itching gets crazy! If I tried to stop the zyrtec I don't think it would be possible. I would scratch my skin off.

Good Luck!!!! I'll be anxious to hear how it all goes.

"I also have PCOS-polycystic ovaries" Me too! Actually Dr. Grubb told me that they don't really know why, but they have found strong anecdotal evidence of increased cross diagnosis with PCOS and POTS. He said they suspect there is a hormonal connection but that is all they know right now. They just don't know enough about POTS and are just scratching the surface with PCOS. When I was referred to Dr. Grubb, my local EP was funny. He said he felt that having one metabolic disorder made it much more likely that there was another one lurking about! I see a reproductive endocrinologist for the PCOS. There is a lot of information on PCOS out there that might be quite helpful to you!

Erik that is interesting info. Does it indicate that if you don't metabolize this, that the medications on the list are less effective or nonabsorbed? Or is it the opposite? I'm struggling. It makes me curious because I've been told in the past that I am a non-absorber of inderal so the levels I had in my body would have killed a normal person. This was over a decade ago and I did get benefit from the med, but the cardios were not all that thrilled. Is this a genetic thing? It makes me more curious to see amiodarone on the list of inducers - exaggerated or reduced response? My father was on what was considered a small dose when he died, but if he was metabolizing it differently, the dosages would be virtually a shot in the dark. They think I have the same arrhythmia so it makes me very curious! I have asthma too, and only use xopenex because my heart rate and bp go nuts with albuterol. The xopenex makes a big difference. Also have you tried accolate instead of singulair? I actually have been on both and while they say they are virtually identical, I have had no issues at all with accolate. While on singulair, I sometimes wondered if it made my heart race. It is a thought. Since this is a sensitivity thread - Does anybody have issues with tylenol? I cannot take anything with any amount of acetominophen in it. They have tried to slip it to me in the past (not believing) and I invariably get very sick to my stomach, dizzy, and have passed out, but I've never heard of a single other person that has had issues with it. Neither have my docs. Now, the just say tell them you are allergic because we have no idea why, but your body cannot take it.

Ram, good thought, yet I've never had a big problem with pooling - but then I've also started retaining fluid for the first time, so things could be changing. It only comes in spells and usually only when I'm on higher than 40 mg. per day of prednisone. I'll have to keep an eye out and see if I get pooling at the same time. hmm

Primary POTS here too... mine is said to be traceable to a gene defect, and my symptoms are largely cardiac related. I consider myself a lucky one in that they are trying to treat the worst of the symptoms and some of it is working!

Just to prove nothing is fool proof, I do have heart disease, but do not have ear folds. ;0) But, everyone in my family that had heart disease that I can think of, DID have the ear things.

I actually came here to post a question about itching! I have had several med changes recently, mostly cardiac and have been put back on high dose steroids. Yesterday, the itching started! Ugggg My hands, my feet, my skin - everything itches. I've had it before, but I don't quite remember it being so bad. I took a benadryl s I could sleep, but it is drving me nuts. I don't have hives, or any frank bumps, etc. Just ITCHING!!! Anybody else deal with this when on steroids? Next thing, my hands will start peeling and feel raw. I hate it, but I have to breathe.

The ER docs I worked with believed it was true, as did all the cardios. Even had a name for it which escapes me at the moment. ;0) Positive "something" fold. It is almost a vertical fold/crease. It stands out most on men because well, they don't generally wear earrings so there is no piercing or indent from that to cover it up or confuse things. I've looked at ears for years now to see if it correlates to what I knew about a person and it hasn't been wrong in my anecdotal experience.