potsgirl

I have a tattoo on my inner ankle, but it was done before I got sick with dysautonomia. Sorry I can't be of more help. I'm sure it will depend on the size, location, if you're going to use black or colored ink, how long the procedure will last (again, size), and other factors. Go to a reputable place, of course. How do you usually do with pain?

Cheers,

Jana

Janey,

Monophasic BC pills have equal amounts of estrogen and progestin in all of the active pills. They are known to cause the fewest side effects, since the hormone levels stay balanced.

Jana

My BP is usually on the low side, so I also have readings like yours. 'Normal' BP is 120/80, but many docs now think that a little lower is better. There usually is a 40-point difference between your systolic and diastolic (bottom) numbers, so your 88/48 makes sense, but of course makes you feel awful. If you get a narrowing of points between your upper/lower BP numbers, it can make you feel even worse, ie: 88/75. I have those numbers frequently.

The 88 is your pressure in pumping blood out from your heart, and the 48 is the pressure of letting blood back into your heart, filling it so it can pump the blood out again to the rest of your body. Being in the 40s is very low, and the 50s can also make you feel pretty poorly. Do you see a cardio regularly? Have you ever had an echocardiogram? This might be a good test for you to have.

Hope this helps.

Cheers,

Jana

Hi Kathy,

I'm so glad you brought this topic up. I also have very thick, long hair, and shampooing my hair is totally exhausting. I'm lucky that my hair doesn't get greasy looking, so I wash it every third day or so. Also, I have wavy hair, so I just let it dry on its own (4 hours of dry time - yikes!). Because I don't have the energy to hold a blow dryer and style, I just dry my bangs. A shower seat can also help for showers, as can a stool or some sort of chair by your bathroom mirror while you're detangling, etc. Some people do their hair in the tub.

I do my 'heavy laundry' on the days my boyfriend is home so that he can transfer the towels, jeans, or sheets from the washer to the dryer. If I don't have an extra body around, I do small loads. I also stop at the grocery more frequently so I don't buy as much stuff at once to lug home.

Just a few suggestions - again, great topic!

Cheers,

Jana

I've found that Reclipsen (a variant of Apri, which you can't get anymore) seems to work well for me. It's monophasic, and I had been on the Apri for years, switching over to Reclipsen for the last several months. I'm not sure how much it helps my symptoms, but it certainly doesn't cause any. Hope this helps!

Cheers,

Jana

Hi Maxine,

It's great that you seem to have found a good doctor at the CC that is taking your issues seriously and doing further testing. I hope you get the answers you need, and that you don't have to go through more testing than necessary. Take care, and good luck!

Cheers,

Jana

Nina,

As I'm staring into the face of this procedure coming up waaay too quickly, this was perfect. I was laughing out loud, and I don't do that very easily. Where did you find this? I love Dave Barry. Thanks so much for posting it!

Cheers,

Jana

Alicia,

Usually it takes allergy meds like Allegra a week or two to really kick in. It's not like an OTC med that kicks in almost immediately. I used to take Allegra, and I'll bet you get more relief as the next week or two go by. Good luck and feel better!

Cheers,

Jana

Hi Carinara,

I certainly have the same problem, and I would suspect it's due to forces of gravity. I'm assuming your blood pressure goes up more dramatically from lying or sitting on the floor to standing than from sitting up higher in a chair then standing. I know my BP falls more when I go from lying/floor sitting to standing than chair sitting to standing - I have OI. It's harder on your body. Do you have a BP monitor? You should check your readings between the different positions and see what you find.

Cheers,

Jana

I'll get leakage like that from my outer right eye sometimes. I usually think it has to do with allergies, but I'm not sure. Mine only lasts for a couple of hours, though. Sorry you have to suffer with this condition so long. That must get awfully frustrating. Have you seen an eye specialist?

Take care,

Jana

Hi Tearose,

Did you mean to write to me or to Peppermint Patty, who posted this blog? To answer your question, I don't take my BP until I've had a couple glasses of water so I'm not dehydrated, and then after eating and one cup of coffee, my BP might come up by 5 to 10 points, but that's about it. And yes, I am getting used to the 'pre-fainting' signals, and grab onto something, or bend over and grasp my knees.

Take care!

Cheers,

Jana

My BP is the highest when I'm lying down (95/70), goes lower when I'm sitting (about 85-90/65) and is lowest when I stand (70-75/60). My HR goes from 60-125 or so. We're all so different, and can vary a lot from day to day or even from hour to hour. Take care!

Cheers,

Jana

Hi Alicia~

Your symptoms do sound a lot like allergic reactions to me. I'm allergic to many meds (too many!) and know how frustrating that can be. You probably should check in with your doc about it....Also, I know pharmacists are supposed to know their drugs, but the last time I called mine, he gave me very wrong info, so I would definitely keep that little 'prescription sheet' that comes with your meds and tells about side effects, etc. My best tip is to check WebMd.com, under 'drugs'. Type in the name of your med, and it'll give you all the info from your 'drug sheet' plus patient reviews. It's great, and accurate. I use it for every new drug I get, or when I'm having unexpected side effects.

Hope this helps! My best & cheers,

Jana

One more thing regarding Mayo Clinic in Rochester....I saw Dr. Brent Goodman, a neurologist specializing in ANS disorders, and since he had just transferred from the Scottsdale location (near me, darn it) it was a quicker process to get in to see him. He was great, and I think I had a two to three week wait. It really is a terrific system, and you can stay at hotels that are connected to the central buildings by underground walkway. I saw that Kari was kind enough to let you in on all the details. I hope you end up making the trip.

Good luck, and both of you take care!

Cheers,

Jana

I hate to break the trend, but I've cried less since becoming ill. In fact, I might cry 2-3 times a year. I'm sure I could use more as an outlet, I just don't do it. Weird, huh? Also, I know you're on some anti-depressants, so are you seeing a counselor? I know it really helped me deal with the onset of this disease, just in helping me cope and accepting some of my life style changes. It can be a very hard transition, and sometimes we all need a little help.

Anyway, welcome to our forum. You'll find a lot of support and caring people here. Young and old, with kids and without, we run the gamut.

Cheers,

Jana

Sandy,

So sorry you had such a miserable experience. I hope you're feeling better today, and the nosebleed has stopped. The advice you've gotten so far on your BP shooting up higher than normal seems solid to me, but of course I'd ask my doctor when I next saw him, just to be sure.

Cheers,

Jana

I just wanted to add that depression, especially when it gets to a clinical level, is dangerous for your all-around health, not just your heart. It can be a factor in many diseases, and can lower your immune system so that you pick up colds/flu's more easily. This is especially true if one does not engage in social interactions and isolates.

Hope you get on the right meds, if that's what you decide!

Cheers,

Jana

Yes! I do the same. I drink several cups of decaf green tea throughout the day. Love it.

I feel absolutely horrible in the morning, and the first thing I do when I successfully make it down the stairs is to celebrate with a cup of coffee. I just have one cup (ok, a rather large one) every morning first thing, and I believe it helps me start to function. I never drink pop or have other caffeine, but my morning coffee stays.

Cathy,

I am one of those 'always cold' people. My body temp normally runs about 96 to 97 degrees. One of the autonomic functions of our bodies is to regulate temperature, so it's probably not too unusual for your temp to be that low, especially if you tend to be more symptomatic when you're standing, like most of us. Even in a 78 degree room my feet, hands and nose are cold!

Good luck and keep warm,

Jana

I had a lot of nasty side effects from Zoloft and had to go off it.

Nina~

Hope you had a good night's sleep and are feeling better this morning. I have some of the same issues you do, and recently tried Activia and Magnesium so I could stop taking the Senna I've come to rely upon. Of course, I'd forgotten my touchiness to all products dairy since I was a child. Four days later and with a beach ball belly, it dawned on me. No more dairy from now on. Take care!

Cheers,

Jana

Sorry, I meant to write HR. Normally one of the defining criteria for POTS is that when one stands, the HR goes up by at least 30 bpm. Thanks for catching that.

jana

I have not had a picc line, but just wanted to wish you luck with your new line. I've known a few people with the port, and I think you're much better off with the picc! Take care

I'm sorry you're going through this right now, just far enough into the semester to make a change in your work hours difficult. It must be very scary to know your brain stem is being pinched and affecting your tongue. Sometimes I wonder if knowing so much about our bodies and their malfunctions is such a good thing! It sounds like you have a doctor on top of things, so that's great. Kudos to you for going ahead with your teaching. I hope you have a support system around you to talk about these things if you're not comfortable talking to your colleagues about these issues.

I hope you're feeling better soon. Take good care.

Cheers,

Jana