potsgirl

Thanks, Bellamia, and all the rest of you, for such kind words and acceptance. You've done more for me than you know... Hugs back! Jana

Hi Maggie, I had to stop work about a month before my diagnosis in July of 2007. Not even close to going back yet...Maybe a poll would be good for this topic? Cheers, Jana

Morgan & Suzy~ Thank you for your kind words and acceptance. I think I will get a second opinion, because my doctor was like yours, Suzy...I haven't had the results of my culture back yet (it's been 10 days!) but she thought it was herpes for sure, and told me to start on the medication. Cheers, Jana

Greetings, All~ I'm wondering if anybody knows of solid proof that our immune systems are truly compromised? It seems to take me a very long time to get over colds, etc., and it sounds as if many others have this same problem.... Thanks! potsgirl

Hello All~ I struggled for a while before I could finally scrape up the courage to put this out to Forum members. I was diagnosed last week with herpes (genital), which was a total surprise to me. I have always been monogamous, never 'slept around', and have been in a relationship that has had no infidelity for the past five years. I know you can have this disease and not know it, so passing it to someone can be very easy - most people never know they even have it. My problem is that I've had the virus for at least 6 weeks, and can't seem to get rid of it. I have severe symptoms, and have just started on a course of anti-viral medication. Does anyone else have this problem? I feel like I'm never going to get rid of this, and it drags me down considerably. It feels like the flu, with stomach pain and cramping, nausea, etc. Please, if anyone know anything about having these two diseases, let me know what I could expect and how to manage it better. Thanks! potsgirl

Hi Ruekat, I also had the cardiac cath done (and I also go into anaphalactic shock with contrast IV), but mine did show a problem - cardiomyopathy with an ejection fraction of 35%. Not horrible, but enough to put me in congestive heart failure. I had to lay flat for 6 hours, and there was no way I could "pee in bed" with the bed pan! How wonderful that was It took me probably five to seven days to feel 'normal' after the cath was done. I also ended up getting a huge knotted bruise from the site in my inner thigh where they threaded the cath tube. I sincerely hope you don't have these problems. I was in congestive heart failure at the time, so I'm sure you'll heal much more quickly. Hang in there. It'll get better soon. If you'd like to PM me, feel free. Cheers, jana

Hi Chrissy, It does sound like it might be a heart issue. My pulse was going into the 30s and 40s, and I had an echocardiogram done and found out I had cardiomyopathy. I also had bradycardia (the really slow pulse rate), so they ended up putting in a pacemaker. This was a year before they diagnosed me with POTS. My cardiologist, who deals with both heart problems and POTS, don't think that the heart problems are related to my POTS, so they're now looking at a condition I could have that includes both the heart and POTS. So much fun! My point, however, is that you really should have your heart checked out just to be sure that's not the issue, or contributing to it. Please let us know how things turn out... Cheers, jana

Hi Mae~ It's one of the most frustrating aspects of having this disease - knowing that I can't tolerate Midodrine (anything over 2.5 mg makes me very sick, and 2.5 mg does nothing for my symptoms), or Florinef. Florinef gives me nasty migraines, and Midodrine makes me feel fluish and headachy. I tried the Midodrine for 3 1/2 weeks at 5 mg, really tried to give it a chance, but no go. I eat a lot of salt - my doc recommends 5-6 GRAMS a day - drink a lot of water, try compression hose (which don't do a whole lot, either), and elevate the head of my bed 4 inches. It's all I can do...at least I love pretzels and salt. Info flash: Rold Gold pretzels, for those who can eat them, have 20% of your salt in just one 17-pretzel serving, and they're low fat. Love 'em. Hope this helps. Feel free to PM me if you'd like. Cheers, jana

Nauthiz, If this is your first case of serious bladder/urinary pain, I would go to my PCP just to be safe that it's not a urinary tract infection. I also have similar pain that's caused by my POTS, but I also have had UTI's before, too. If it does turn out to be a UTI, it needs to be treated with antibiotics. Better to be safe than sorry... Take care, jana

Willows, What a gorgeous cat! And you did a beautiful job photographing them. What a luck cat. Cheers, jana

brianala, I usually never wake up with anxiety, but I certainly struggle with it. I was diagnosed with general anxiety disorder (gad) and have had a lot of success taking a small dose of Paxil. I've seen a number of people on the forum who take anti-depressants/anxiety meds, and perhaps this would work for you, too. I rarely feel anxiety anymore, which is great. I also have Xanax, which can help alleviate 'panic attacks' or if you feel an anxiety attack coming on. Just something to think about...you may want to ask your doctor about it. I'm very sensitive to meds, but I've been able to tolerate these two in small doses. Please take care and hope you're feeling better soon! Cheers, Jana

Midodrine sounds like it would be a good drug for you to try. It helps keep your BP from falling too much when you stand, and should also help with your elevated pulse. Another drug frequently diagnosed for this problem is Florinef, which also helps you hold on to fluids/salt. If you're like me, when I stand up my blood pressure drops about 30 points (down to around 70/55), and my pulse goes from 60 to around 115-140. Unfortunately, I couldn't tolerate either of these drugs at a higher level to help me, but they may work for you! Ask your doctor about them, and good luck! Cheers, Jana

Hi Suzy~ Absolutely! It's like I'm standing one minute, and then the next I go into 'jello form' and just drift right down to the floor - more like a splat! Not very ladylike, I'm sure. Cheers, Jana

I just did my tilt table at the medical center I go to, I didn't require hospitalization or outpatient treatment. My insurance paid the majority of it - I think I paid $120.00. That was in Tucson, AZ. You can always call the billing office and they'll check with your insurance and let you know how much you would owe if you would get it done...I always do that to know what to expect. Cheers, Jana

I must agree with the others that your doctor seems misguided. Syncope usually occurs in NCS and orthostatic hypotension. I have two doctors that don't agree on my diagnosis. One says POTS, and the other severe orthostatic hypotension. I can faint daily during my bad spells, and I also have lots of 'grey outs' where I'll just suddenly fall. I hope your doc figures it out correctly! Cheers, Jana

Hi Gary, I moved to Arizona from the Midwest and within 4 months got very ill. They think I had valley fever, a virus. I have never been well since. Diagnosed with cardiomyopathy in 2006, and then POTS one year later. I still wonder if I might be better moving back... Take care, Jana

I can't say that I've tried this yet, but my doctor told me to eat a handful of pretzels or another high salt food before getting out of bed in the morning. Also, if you take Midodrine, to take that before getting up, too. Hope these suggestions might help! I can relate to the horrible morning syndrome. I would never leave the bed if I felt like I was going to feel that way all day. Take Care, potsgirl

My doctor (Mayo, MN) told me to tilt my bed 4". While I voted 'yes' on the survey that I had my bed tilted and it is still tilted, I really haven't noticed a difference either way. A height of 6-10 inches will be hard to do with a bed frame...but Good Luck! Cheers, jana

Greetings! We will be having a get-together in Phoenix (Scottsdale) AZ on Thursday, May 7th. This is an informal meeting just to talk and get to know each other. We still hope to plan something on a weekend in a centralized location to try to meet people's needs for travel and finances (with discounted hotel rates) sometime this summer. Any ideas are appreciated. If you would like to come to our May 7th lunch/afternoon hang-out, please PM me for details. Cheers, Potsgirl Jana

Bluesman, Please don't give up on a relationship. You will meet someone who is compassionate and caring, and will be willing to help support you through the tough times. I think the hardest part if getting out there and meeting someone. Of course, I know people who have had great success with sites like EHarmony. I agree with Dizzy Dame in that the most important thing is to bring up your illness early in a relationship. Perhaps not the very first date, but soon after (unless it's obvious you are ill, ie: in a wheelchair, etc.) You may certainly PM me also if you need some more female advice. Hang in there! Cheers, Jana

Hola UtahApoc~ Thanks for thinking of us and posting this warning. I've been following this story very closely, too. I'm glad the health officials are seeing this as a very real and dangerous situation and closing down schools to prevent further contamination. I try to be very careful with picking up germs - washing my hands a lot, not touching bathroom door handles and such, and then of course I get into an elevator or go to a movie and sit next to the only person coughing and sneezing. Whattaya going to do? Cheers, Jana

Nauthiz~ I can go for 6 or 8 weeks in a 'down' cycle, especially with my headaches. I'm in a pattern right now where I've had this same, nasty headache/migraine for about 3 weeks now - daily. Eventually I come to a 'good' phase where things are at least doable. Otherwise, I have to force myself to get out of the house for small errands. Sorry you're going through a rough patch right now. Hope you feel better soon! Cheers, potsgirl

Suzy, I'm so sorry that you're hurting so much. It's so hard to start ourselves from overdoing things when we're having an 'up' day. Of course we want to take advantage of it! One of the true frustrations of our disease. I do think with time that you learn more about what your personal limits are and how to save up energy. A friend of mine who also suffers from this disease has described our energy levels as 'spoons'. You start out each day with a certain number of spoons (energy; ie ATP) and you need to determine how many 'spoons' certain activities will take and how to know when you're close to being out of 'spoons'. I like the analogy. Here's a huge hug and lots of positive energy! Jana

firewoman, I feel my heart beating irregularly quite often, especially in the morning when I'm taking my BP, where I can also hear the extra or missed beats. Also at night, when I first lay down. I've asked my pacer people about this, and they said it was normal. Ciao~ jana

twinmom, Thankfully I love salt, so I salt all of my food as much as possible. Rold-Gold pretzels have a ton of salt (my doc told me to eat a handful before getting out of bed), as do broths (chicken,beef) and many soups. We're supposed to be eating something like ten times the normal amount of sodium in our diet. The daily amount of sodium for the general population is 2,400 mg or less. I was told to try for 5-7 GRAMS a day. Also, I try to take the buffered salt tablets. Yikes! Cheers, potsgirl