potsgirl

Hi UtahApoc~ Since diagnosis in July of 2006: 0: maybe 1 or 2 since diagnosis 1: a couple of days a month 2: a couple of days a month 3: several days a month 4: most days of the month 5: a couple of times a month What medication are you taking? I'm trying Midodrine again (7.5 mg 3 times daily), and eat lots of salt, water, elevate the head of my bed, and exercise - especially my lower body and abs. take care, jana

Broken_Shell: Thank you for the pharmaceutical information. It put my mind at ease. It must be all the salt I've been trying to eat lately. BellaMia: That's exactly how I feel on Midodrine. I get very bad headaches, vision problems, anxiety, and brain fog. I only made it to a 5 mg dose twice a day because I go to bed so early, and absolutely cannot stand the 7.5 mg dose. I don't tolerate Florinef well, either. Do either of you take Florinef? Thanks again, Jana

Dani, Here's my trick...I take Dramamine since I tend to get a little motion sickness anyway, and if you get the real stuff, the regular (not the non-drowsy formula), it'll put you at rest, too. Either that or Benadryl can help make you drowsy and less likely to have anxiety. I would try that first, before taking the Klonopin. And bring anything soothing to you. Your pillow, mellow music, a meditation tape. I'm sure you'll do great! hugs, potsgirl

Nauthiz~ I really feel your pain - literally! I have the same problem. It seems as if every time I start to feel a little better and ramp up my activities a little, I get hit with something else. I am SO TIRED of this illness. I was feeling a little better about 3 weeks ago, and then came down with a host of female problems that don't want to go away. I've been treating them this entire time. I'm also so fatigued that by 6 pm I can hardly stay awake. I get up early, but am asleep by 8 pm. Not much of a social life, eh? Sorry, I'm venting too, but lately it's really been difficult since I've missed out on various activities I was looking forward to...And isn't it frustrating that we try to plan something and never know until that day if we'll feel up to it or not? I hate canceling plans all the time... That said, comfort definitely does come from knowing that there are many others going through the same things, and that there are many who are having more difficulties than I am. I try hard to look at the benefits and blessings I do have everyday, and usually that helps a lot. In fact, I'm pushing myself to go to Easter services today, and to lunch because it's my fiance's birthday. It'll be very difficult, but I'll feel good when I get home and know that I did that for him (and me). Please take comfort knowing you're never alone, and I'm sending lots of positive energy and hugs your way. peace, jana

Hola Everyone~ I started Midodrine about 3 weeks ago, at a low dose of 2.5 mg, 3 times a day. I have been on 5 mg, 2 times a day for the last two weeks. I seem to be gradually putting on weight, although I'm eating the same number of calories and exercising the same amount. Is this basically water weight? Do others have this problem? How much was gained? I've put on about 5 pounds in the last 2 weeks, which is fine, but I don't want to gain too much! Thanks, jana

Firewatcher~ You're absolutely right about the blood pressure cuff for the wrist - I also can't use one. I bought a decent one that goes around my upper arm, just like at the doctor's office, but with a digital display of BP and heart rate. Thanks for remembering that great advice! potsgirl

Hi Dani~ Flying can be difficult, but certainly not impossible for many of us. I just had to fly to Rochester, MN, to the Mayo Clinic last month. I had planned for plenty of time to rest between flying into Des Moines, IA (my mom lives there), and renting a car to drive to Rochester. Appointments got mixed up at the clinic, however, so I ended up on a layover flight, landing in Des Moines, having to get a rental car, and driving to Rochester (3 hours) all on the same day. Yikes! Thank goodness I had my boyfriend there or I would not have made it. My first appointment was the next morning at 6:45 am, and it took us 10 hours of traveling to get to Rochester from Tucson. Drink lots of water, and take a wheelchair or one of those shuttles to get your luggage. Others have replied with these ideas, too, plus other good ones. Try to get a good night's rest before you go, and accept as much help from others as you can. Also, I always ask for a 'quiet' room and bring some white noise along. I also have generalized anxiety disorder - are you taking any meds for that? I'm on Paxil and will take a Xanax or two to get me through really tough times...Perhaps you can ask your doctor about that? I know you'll do great - you'll have such a feeling of accomplishment when you get there! I wish you tons o' positive energy. Peace, potsgirl

Hey BelieverEM, Everything that BellaMia said is great advice. If you're sure your mom's BP cuff is accurate, trying taking all of those measurements when you've been lying down resting for about 5 minutes, and then when you stand at 1 and 3 minute intervals. As BellaMia said, we're all different, and for me, I would be very happy to have your numbers when I stand up! Tilt table testing is the ultimate determiner (usually) for a POTS diagnosis...Hope this helps! peace, potsgirl

Suzy, I like either 'vida' or 'bolts', or even 'POTSPOWER, aawaaaaayy!' Here's a big hug, potsgirl

AJW, I'm wondering if you're being tested for the same thing I am - amyloidosis? Please let me know, as I'm also waiting for my genetic tests to come back... peace, potsgirl

futurehope~ Just a thought, but perhaps it's also the high protein combined with the sugar? I eat Balance bars once a day, and they usually give me a little 'lift'. They usually have 14-15 grams of protein. Since I'm a vegetarian, it's one of my good-tasting ways to raise my protein level. My doc at Mayo Rochester has told me to drink 1 cup of coffee in the morning - previously I had been drinking green tea. That also helps my 'morning blues'. I'm interested in what you find out. Please keep us posted, or PM me. Ciao! potsgirl

bizbiz, I have constant and severe balance problems. I zigzag through stores and bump into things all the time. I fall over and try to grab whatever is handy so I don't fall to the ground and hurt myself. I wish I could give you some wisdom on how to prevent this, but the only thing I know of is to try taking Meclizine, which helps a little, especially in preventing the nausea that often goes with it. You get more used to it with time, and I think it's pretty common with dysautonomia. Good luck! potsgirl

Hi Arizona Girl, I think Suzy is already sending you an email, but there is a group of about 6 of us in central Arizona that are trying to form a support group. Shoot me a personal message (click on my 'potsgirl' name in upper left-hand corner) and we can talk more...Great to have another Arizonan! I'm from Tucson... potsgirl

Hi Dani~ Almost every single day that I need or want to leave my house I have to push through it. Sometimes I'm successful, sometimes not. But I go through the motions, getting dressed, brushing my hair, putting my shoes on, and trying to get out the door. Some days my vision is off and I know it's not safe to drive. It's so irritating - I want to be like my old self and think nothing of running a couple of errands or heading to the gym. My early mornings are horrible, so I know better than to schedule any early appointments. After a cup of coffee and some food, I usually feel a little better. Now, this doesn't mean it has to be the same for you, and I count myself lucky that I usually average getting out for an hour or so most days of the week. It's easier on the weekends, because my boyfriend drives me places. If I have a medical appointment that I can't miss, he takes time off to get me there. I'm very lucky that I have an extremely supportive boyfriend! (But sometimes wonder if I'm too much of a drag on him....Plus, I can't do evenings out at all). Good luck with figuring out your high energy periods, and living your life to the fullest. I wish you all the best, my friend. Peace, potsgirl

Suzy~ Yay for you! I am so happy that you found a wheelchair for such a great price and that it's already expanding the things you can do. All my best that you continue to have a great time with it. Have you named it yet? Ya gotta have a name... cheers, potsgirl

Nauthiz~ I don't have this problem, in fact, I'm usually thirsty a lot, especially in the morning. However, it sounds to me like you need to contact your doctor pretty quickly to see what they can do to help with your throat issues. As I'm sure you know, being dehydrated is one of the worst things for us, so you must figure out a way to get more fluids down you. Another trick is to try and eat foods with a high water content - watermelon, other fruits and veggies. Also, does a milkshake feel good going down? I hope you and your doctor can figure out a way to get you more fluids! Peace, potsgirl

Hi Suzy~ I don't have the same problems that you do, but I do have problems feeling like I have to urinate a lot, especially at night. Sometimes I'll go to the bathroom about 3-4 times in the first hour of trying to get to sleep, and then hardly have to go. Annoying, no? Take care, potsgirl

Firewatcher, I have been on Klonopin for about 8 years now, and have tried to go off of it a couple of times. You didn't say how long you'd been using it, but I can tell you that when I've tried to go off my 'very low dose' of .25 mg, I couldn't do it. It made me sick and very anxious. I couldn't sleep and had tremors. I haven't increased my dose, but I also take Trazodone and 15 mg of Paxil. I know I am addicted to both the Klonopin and the Paxil. But, everyone is different... I have a problem with being on a steroid, so I won't take Florinef. I've tried it, but got too sick and had too many headaches. By the way, has your doctor tried to give you a preventative migraine med like Topamax? That may help with your headaches if they're basically daily, like mine are. Hope this helps a little. Peace, potsgirl

Earthmother~ You are indeed a great storyteller. You also made my day a little brighter because on my good days I can actually do a couple of loads of laundry. Granted, my boyfriend carries the basket for me and puts it on top of the dryer, but as long as I'm not washing sheets or towels (which when wet can totally wear me out trying to untangle and get them out of the washer to the dryer), I can manage some light loads. Of course I sit down while folding. The stairs are extremely difficult. I find it odd that I can walk on a treadmill for 20 minutes at a slow pace, but by the time I get upstairs (a whopping 15 steps) I'm totally out of breath and it takes me several minutes to catch it again. What a disease, huh? Thanks for sharing your story! Peace, potsgirl

Hi Melissa, Thanks for the very informative email! I just want to add one thing about my experience with getting my gallbladder taken out. I ended up in the ER in really bad pain, and they did all of the usual GB testing, even the hyda scan, and nothing showed up on any of my tests. My docs told me that it happens sometimes, especially with women, but due to my symptoms, they knew it was my gallbladder, and it was. My gallbladder was hardly functioning and looked completely dead. So...just a head's up for those who are having a lot of pain but nothing showing on their tests. I don't want to cause alarm, just know that it's a possibility. Peace, potsgirl

Julie~ My sympathies for your lost. I don't know what I'll do when my cat passes on. She snuggles with me whenever I'm bed-bound or semi-reclining in my chair....I'm thinking of you. Peace, potsgirl

Hi Erika~ I used to be constipated all the time, too. I was diagnosed about 2 years ago, and in the last couple of months I've noticed a big change in the bathroom habits. I get bouts of diarrhea now almost daily, in the morning, after I have a cup of coffee and something to eat. Usually I'll go from 1 to 4 times in an hour or so. I share your pain! Peace, potsgirl

Firewoman, Interesting about your gallbladder. I started having pain in my upper abs, especially on the right side, and it went around to my back. It ended up being my gallbladder, and they took it out pretty quickly. I'm still having some food issues with it - some foods make my stomach really touchy - and that was almost 4 months ago. However, they expected me to have a longer recovery period since us POTSies don't usually recover quickly. I'm glad I had it out, mine was totally white and not functioning, but I wouldn't do it unless you had to. I also having kidney function issues, it goes up and down, since the blood is not getting around to the organs as it should. Hope you're not feeling sick with the gall bladder. Hang in there, and best of luck! Peace, potsgirl

Cat Lady, One of the hardest things I have had to do was to leave my job - I loved my work! I was an archaeologist for the county here in Tucson, AZ, which meant a lot of going to sites and doing fieldwork and meetings off-site. I couldn't make it through a week anymore, and I knew it wasn't fair to my employer, who did everything they possible could to help. Luckily, I worked for the state, so I was eligible to apply for long-term disability, and this has saved me. Do you have long-term disability in your employee benefit package? Also look into short-term. If you have long-term disability (LTD), apply for it, and see if you can take a leave of absence or cut back on your work while you make the decision. LTD has allowed me to continue living a decent lifestyle, and offers me insurance at a much cheaper rate than COBRA. It's definitely worth checking into, but it can take up to 6 months. Good luck, and feel free to PM me if you have more questions. Ciao~ Potsgirl