potsgirl

Maxine,

Thanks for sharing such great news! Do you have a history of heart problems? I've dealt with cardiomyopathy and recently added diastolic dysfunction to my list. I hope that's not the case for you, and that your heart got an 'A' rating. We have enough to worry about!

Cheers,

Jana

BellaMia,

Yay! I'm so glad that you got approved for the home health help. Didn't you post earlier that your son might be able to help you build the wheelchair ramp? If you do need to contract it out, it should be a relatively simple job for someone to do. Way to go. You are so deserving of the extra help, I'm smiling as I write this!

Cheers,

Jana

I have a request to make...Can people please write WHICH Mayo Clinic they're talking about? There are several locations, and some are better and have more specialists for POTS than others.

Mayo Rochester (MN) has a sub-group of specialists who work with POTS/dysautonomia, and I think they're fantastic. Definitely worth the trip, and you can ask to be put on a cancellation list. Also, if you try to get an appointment with Dr. Brent Goodman, the neuro POTS specialist at MN, you may be able to get in a little more quickly. He was my doc, and he's great...spends lots of time with you, etc.

Good luck!

Jana

I'm afraid I don't have any answers for you, just commiseration. I have compression hose that have an opening for the toes, and then go up to my waist. 20-30 weight. I cannot even get these on by myself, and when I do succeed in coercing someone else to help, they don't seem to do anything for my BP, and I'm just very hot and itchy. I hate them with a passion. I'm also in Tucson, AZ, so they're just too darn hot to wear most of the year, even indoors.

If anyone has a secret to getting these torturous devices on, please let us know. I did get mine from a medical supply store, through my insurance, and if you're interested I can get you the brand - I've actually already posted it on another post regarding c hose.

Keep trying, and good luck! I know they help a lot of people.

Cheers,

Jana

Carinara,

Antihistamines are also part of a wide variety of drugs that can take some getting used to. I know that I couldn't jump from 5 - 10 mg in one day, so perhaps that's the problem. Why don't you try slowly increasing your dose over time, and see if that goes better for you....I wouldn't give up on Zyrtec yet until you give it a fair chance. Perhaps starting at 1.25 in the am for a week with 5 mg at night may do the trick. Then the second or third week, you increase to 2.5 mg in the morning. Or, you might want to just take 7.5 mg at night and see how you do.

This is what I would need to do, because I'm so sensitive to meds. I usually start on a 1/4 dose and slowly increase. If that doesn't work, you'd want to change your antihistamine...or if it really bothers you now, you may want to try a different brand. I just believe that you have to give a med a chance, more than one or two days to really see how it'll affect you.

I'm sure you'll find what's right for you.

Cheers,

Jana

I'm sorry, I didn't realize that you fainted while you were sitting down. You definitely don't want to drive, then. What do they think causes your fainting when seated? I only faint when I'm standing up too suddenly or on my feet too long. My BP will fall to around 65/45-50 and down I go. I'm usually only out for a minute or so. Do you have sudden falls? Sometimes my legs will give out and I just fall on my rear - it's just a constant source of amusement.

I really hope that you find a good doctor sometime soon so you can get on the right meds/regimen for you, and start feeling better. It doesn't sound like the meds you're taking are doing enough to prevent these dangerous fainting spells. Has your doctor mentioned Florinef or Midodrine to raise your BP? What are your regular BP and HR measurements?

Cheers,

Jana

Compression Hose: My insurance paid for mine, so I got two pairs from a medical supply store. You just need to have your doctor write you a prescription for them with the size. Mine have an opening for my toes, and go up to my waist, so they give me the most support possible and help prevent pooling in the lower feet/legs. The brand is:

Mediven Plus (with MediSilk)

You need to be measured for the size/length

Compression weight 20-30

Beige

I hope this helps!

Cheers,

Jana

Elfie,

I'm so sorry to hear about your grandfather's death and your grandmother's fall. I have no idea how you managed a 22 hour drive over one weekend. You should be proud of yourself for that! Could you have possibly picked up some food poisoning while you were there, or do you think it's definitely POTS-related?

Feel better soon,

Jana

I rarely get sick, but when I do pick up a bug, I tend to get really sick and it lasts a long time. If your main complaint is your stomach, than you probably have a stomach virus and not the 'flu', since the flu doesn't affect your stomach - just your head and respiratory symptoms. Not that that makes you feel any better, huh? What did you mean about temperature changes? Let yourself be waited on and rest while you're recovering!

Hope you feel better soon,

Jana

GOOD LUCK!!

Let me know how it goes...

J

I took the 'Activia Challenge' and made it for 6 days before I couldn't take any more bloating or nausea. I usually don't do well with dairy, though. I hate yogurt as a general rule, but found I liked the strawberry Activia. It just didn't like me. I have chronic constipation so was trying a different remedy, (along with magnesium so I could get off the Senna). No go (no pun intended!) I guess there are quite a few people who have had problems with this product.

Good luck!

Jana

I realize all of our stories are on this board, if not entirely, in bits and pieces. I was wondering if people would be willing to post just briefly their specifics. I forget who said what and who has what and who has tried which med, etc. without looking back through numerous posts.

Basicallly,

1. Jana

2. 47

3. POTS/OI, cardiomyopathy, diastolic dysfunction (possible amyloidosis), migraines, vulvudynia (chronic pain in vaginal area)

4. 44

5. Tucson, AZ

6. Extreme fatigue, dizziness, syncope, very low BP, migraines, tremor, severe shortness of breath, loss of coordination, brain fog, GI track issues - wheelchair

7. Fatigue, headache, shortness of breath, GI track issues - can get out and walk and perhaps do a short errand, brain fog - no wheelchair

8. Cannot tolerate Midodrine or Florinef. Cannot take BB, any heart med that lowers BP

9. Paxil, Xanax, Klonopin, small doses of Percocet when really necessary. Water, salt, yada, yada...Nuun hydration tabs

Cheers,

J

Hi Elana,

I'm also a fainter with POTS/OI. I don't go to the hospital unless I faint and hit my head on something or feel that I might have caused myself damage. You really should be safe and go if you hit your head on anything when you go down. If you pass out and come to within a minute or two, and don't hit anything that might cause your brain damage, you're probably safe. But only you know your body the best, and if something feels different or out of the ordinary, it's obviously better to err on the side of caution.

I have a bracelet I wear with a black velcro strap that I love...It has a silver plate engraved with my name, contact name and phone number, doctor's name and phone, and my list of problems in case I faint while I'm out on my own. If you're interested, I can get you the info on how to get one. They're inexpensive but a comfort.

Cheers,

Jana

Some antihistamines will make me kind of jittery, and that's when I take a small dose. If I take just one Benadryl, it does the trick but makes me sleepy. Perhaps you need to take 2.5 mg in the morning and 2.5 mg at night for a while, so your body can adjust over a period of time. Sorry you had that experience, and better luck with the next try!

Cheers,

Jana

Eric,

Abdominal compression means wearing compression hose that goes up to your waist instead of ending at your knees or upper thighs. They're supposedly the best ones for POTSies, but they're awfully hot when you're in a warm climate! I have 2 pair - want one?

Cheers,

Jana

Carinara,

I think it all comes down to what works for YOU. My antihistamine puts me to sleep, so I take it at night. Sometimes if my allergies are bad, I'll take a 1/2 dose during the day. When they're really bad, I'll take a whole one after lunch, lay down, and get a good nap, too. Why don't you try what the doctor suggested and see how it works for you. I can only take small doses of meds, so I might even take 1/2 a pill during the day, and the rest (7.5) at night. Experiment, and you'll figure out the best course for your own body.

Cheers,

Jana

I second that emotion! Have a great one!

Cheers,

Jana

Erik,

Kudos to you for making an attempt and being so smart about it. We'll all want to hear how you do. Best of luck!

Cheers,

Jana

That's so true, Brye. I think we all have a tendency to blame almost everything on POTS, when in reality, some of these medical issues could be stand-alone issues.

Great news, but still so frustrating! It's like you have a minute of "Yay - I don't have ....." and then you crash a little and wonder what exactly it is you DO have. Here's hoping for answers, and more good news.

Cheers,

Jana

I like to eat Rold Gold pretzels (I swear they have the most salt of them all), and then salt all of my veggies and salads, but mainly I love salt and bread. I get these great cheese breadsticks from Trader Joe's, warm them up in the microwave for 10 seconds, and then dip each bite in salt. Salted bananas? Boy, I don't think I'm that brave!

Sorry, forgot - Klonopin was much, much harder for me to get off of than Xanax. But it's different for everybody.

I absolutely love my Xanax. It takes the edge off and lets me fall asleep at night. I take it every night, about 1/2 hour before I want to get to sleep. I take .5 mg, and that's after I've been taking it for the past 10 years. I would start off small, of course, perhaps 1/4 to 1/2 a .25 mg pill when you and your doctor decide is the best time(s) to take it. Some people take one before bed, some take small doses throughout the day, depending on your anxiety level. It makes me feel calm and more secure.

I'd give it a try and see how it works for you. Small doses under a doctor's care should be safe for you.

Cheers,

Jana

I'm really sorry you had to endure such a nasty experience with a doctor who 'knew POTS'. I think that it's not just going to a major research hospital that can get you a good diagnosis and treatment plan, but WHO you see while you're there.

I went to Mayo MN and saw Dr. Brent Goodman, who is a neurologist but also part of their ANS speciality sub-group. He connected me with a cardio that also was experienced with POTS. He took over an hour with me at each visit, answered all of my questions, and even now, since I've been back home in Tucson, returns all of my calls promptly. He was wonderful. He has now lined me up with some cardio testing I need with a cardio at the Mayo AZ clinic and they'll work together on my case. It's been a great experience.

My point is that there are still good and bad doctors at the best of hospitals, and if you can get a referral to one that someone else can vouch for, it's certainly worth it. I know and have worked with a great neuro/cardio at Mayo MN, and a wonderful cardio at Mayo AZ. If anyone wants more info, please PM me. There are good doctors out there - we just have to find them!

Cheers,

Jana

It seems as if several women here had their menses start at a pretty early age.

1st period: Age 11. Very heavy with a lot of clotting. 6-7 days. Went through 2 tampons/one pad every 3-4 hours on days 2-3. Lots o' cramping. Ugh.

Pregnancy: Age 20. Gestational diabetes. Son weighed 11.5 pounds at birth.

Age 21-now (47): BCP. Not only for pregnancy prevention, but also for heavy, long periods. Recently diagnosed with -3.1 osteoporosis of spine, will be going off pills soon and starting Fosamax.

In perimenopause since age 44/45. Gotta love those hot flashes!

Cheers,

Jana