runningshoe

Sorry that happened. It is so hard to have our bodies not behave!! I suggest you rest and give your body time to recover from this. I only had one experience like it but it was traumatic. Sounds like you need to wear a 24 monitor for a day or two and see what is going on. Take care!

I have pots and Hypertension so the Amirtrip has not been a problem.

Hi Just curious, what made you think it was a panic attack and a pots episode? My dr lets me take an ativan before bedtime. He said taking them on a regular basis during the day is not a good idea. He says studies show that ativan blocks people from forming new coping mechanisms. Other drugs are better. I will ask him more when I see him on Friday.

Wow, you guys must work in a much tougher work environment than me. That wouldn't be hard to do since I work in such a small place. I am being open with people because I can't work right now and they needed a reason. I also am quite open with people in town. One day I was walking unsteady and an aquaintance yelled out of her car "did you have too many already?" I don't even drink! I look wierd when I am potsy and it I need people to not think I am ignoring them or on drugs or drinking after my kids get dropped off at school. Follow you instincts and if they tell you to keep things quiet than maye you should. Good luck!

Hi I only work with a few people but I sent them an email with my diagnosis and a link to pots place.

Hi I take 30 of Amitrip for bladder pain. I can tolerate it well. I take it at night.

Hi, I am still taking .1 of florinef. I thought about it after I read some posts and called my cardio and said since my hubby would be away for 11 days I was worried about getting too POTSY and not being able to take care of my kids. He agreed. My bp has come down a bit but I am certainly more potsy, tachy etc. Dr says my bp is now paradoxal orthostatic diastolic hypertension. I just started the estrogen patch because they found out I was completely in menopause (42, hyster but kept ovaries). Dr thinks my body may do some wierd things while body readjusts to estrogen. I am frustrated but not as weepy. Man did I need that estrogen!! He will monitor me weekly for awhile..... Lina

Hi, I had to reduce my florinef due to high bp and so now I am more POTSY again. UGH! Dr says that I now have paradoxal postural diastolic hypertension. Try saying that 3 times fast!! Anyone else heard of it? Got it? Thanks....

Hi I have been on .4 florinef for 2 months and my pots is better but bp is too high. Dr took me off flornif last week but after posting and getting advice here I called him and we decide to go to .1. So now it is one week later and bp is still high. What do those of you with high bp take for your pots? I might just have to give this more time but I want suggestions if you have any. THANKS

I am very weary today but my thoughts are: I too could not make sense of my illness when I tried to apply "the Secret." My first pots symptom was on a beautiful day when I took my dog running in the woods with a bunch of friends. Happy and healthy (so I thought), I jumped in my car and headed for home. That's when everything went dark and I had my first "episode." No, the secret does not explain my illness. Today I went to an energy healer. She was amazing and knowing nothing about me she said "there has been a miscommunciation between you brain and the rest of your body" YES. She said so many things that made sense ( too many to list but things such as scar tissue over my belly - Hysterectomy...) Okay, my point, and you don't have to believe in this stuff but it helped me today. She said your body wants you to know that you didn't make this happen and it is not your fault. I wept because there are so many people who want to point the finger and say "I don't live like her so I won't get sick like her. " There are shelves of books at the store about healing your own pain by just ignoring it etc. I wouldn't wish this on anyone including myself! But, I do believe we have to listen to our bodies. We have to respect their limitations. We have to allow time to heal. When I was first sick with pots I just kept on going. I worked, took care of my kids, etc. It proved to be too much for me and I fell apart. I should have given myself time to rest and regroup. Lesson learned! In yoga class the instructor reminds us to thank our bodies for what they can do. That I what I choose to think about.

There was a lengthy discussion out in the hall between the two Cardios in the practice and they decided that it would be okay for me to stop cold turkey. I asked point blank if he was sure because I had read from this website people having trouble coming off so quickly. He assured me yes based on the fact that I hadn't been on it too long and also (don't quote me on this) something about although it was a high dose of florinef it is in fact a small dose of steriods. If I start to feel off I will call them again. I will be going in weekly for bp checks. Let's hope for the best!!

Yes, I agree, I think I went up to .4 too quickly. After my bp is undercontrol we will start over if necessary. As my mom reminds me, doctors are only "practicing" medicine!

Hi all, My bp has been soaring probably due to .4 florinef I have been taking. I check my bp with a little machine at home and was getting readings like 160/110. Not good!! I went to dr and the nurse checked me lying down, sitting and then standing. She was getting readings like 140/88. Hmmmm I thought I have not seen that low a number in weeks. Luckily I brought my little bp machine and said can we check it with this maybe there is something I am doing wrong. Sure enough little machine said 150/100. She said maybe the machine is not accurate. The nurse left and the dr came in and I asked him to check it because it was so different. Well he was very thorough and checked twice and then twice with my machine. All the readings were almost identical, and of course, way too high so I need to come off the florinef. What am I to think? I certainly don't want her responsible for my bp readings. Luckily dr usually does them for me. Let's all learn from this. If your gut tells you to double and triple check something make sure you do! I think she was just going way too quickly and wasn't catching the real numbers. LIVE and LEARN!!

Ambien helps me and these days since I have IC pain I use ativan. P.S. to I hate bananas - I love that song "Jesus take the wheel." I listen to it and weep these days!

No! My ovaries have completely shut down. Gyno thinks they never kicked in after the hyster 2 years ago. My estrogen is so low she said it had to take over a year to get there. Now I am seriously wondering in my pots (first major symptoms in Nov. 2006) kicked in because my body had no estrogen. I have learned that estrogen plays a role in keeping our adrenal glands going. I am annoyed that no one thought to test my levels when I had my first presyncope. I also have interstitial cystitis which was remission until this year. I went 12 years with no symptoms and then bam pots and then IC. I am hoping that the hormones will help both illnesses.

I flew when my pots was out of control. I just took an Ativan and hoped for the best! It worked!

Hi I am on vivelle too - what dose? Where do you were your patch?

HI folks. So I am 42 and have been dealing with pots since this past november. The @##$** hit the fan when my old interstitial cystitis kicked back one month ago. I feel like an old lady taking pills and pain killers ugH. My Gyno ordered hormone test and just called t say that I am completely in menopause. Estrogen was at 10 (37 and below is the marker). So I wonder if all this started or got worse because of the major change in my body. (I had a hyster two years ago but still have my ovaries). Share you thoughts! Any one on hormones?

Thanks for all the replies. It is good to know I am not alone. Today is sunny and it feels good but I still have my fleece and slippers on! To Dave - try the heating pad or the kind you can warm up in the microwave. I take .4 of florinef everyday and I have not had a tachy episode in several weeks. My dr says it takes a while for it to work. Hang in there

Hi all, My heart rate has really come down with the florinef. Are any of you using it? Unfortunately it is making my bp go up (I already had high bp). Just checking....

You go girl!!!!!! You are an inspiration!!

Good morning all, I am feeling pretty poorly due to my interstitial cystitis and of course there is always the pots! I feel cold a lot and took my temp and it is low 97.0. Is this a pots thing??

Hi, At the end of a potsy day I can be nausea as well. Gross feeling but it passes. Some posts here have suggested reclining is better than lying down. Hang in there!

Hi, Sorry I don't know much about it but maybe your adrenal glands are working that well?? Maybe your dr would test that for you. I did a 24 hour urine catch to check for that. I am on .4 of florinef but have yet to cut back. Good luck!

Forgive yourself - you couldn't help it. Hang in there!