Notgivinup

I have never in almost 3 years had a remission in my POTS symptoms last this long. I'm thrilled and terrified at the same time. It's been I think 6 days in a row now that I've felt good. I've actually never (since this started) had a day with 0 POTS symptoms.

Like I said in a previous post, the only change has been 10mg. zyrtec twice a day. Morn. and before bed. I've stopped all my POTS meds. Mestinon, florinef or licorice depending on how I felt. Not wearing compression stockings. I also stopped needing zofran for nausea. I still take a tiny dose of klonapin. I've even allowed myself to drink pop the last two days. Soooo sick of gatorade.

I also forgot to mention I received my order for Womens One vitamins, and have been taking them with no problems whatsoever.

I can't believe what is happening here. I'm scheduled to see Beverly this coming Tues. I don't even know what to tell her, as I feel normal! It's like the day before you're going to get your hair done and it looks great!

I've been sick for so long it almost feels weird, with nothing to complain about.

Is this spontaneous POTS recovery? Is that possible? Or can it be I do have a mast cell problem? Like I said I'm too scared to stop the zyrtec to see.

I won't even take my B/P or HR, cause I don't want to know. I just feel normal. Of course a crash could be coming.

I just wanted to give everyone some hope. Hope that I was losing, the longer this went on.

I'll post more after seeing Beverly. Goodnight for now.

Oh, bummer! I was afraid that my be the case Thanks for letting us know! I really suspect I have other issues other than POTS and I was hoping to get the appropriate tests to make sure what kind of POTS I have so I can get started on the right medicine. I'm hesitant to try any medicine without having a complete diagnosis. So far I've only had a tilt table test and SED and ANA blood test. I really want to rule out some other things, but it sounds like that might not be the case for this. ARGH!!!!

If you don't mind me asking, what are your main symptoms?

Wow, thanks guys, you sure know your stuff. I did google pics. of UP, they look the same to me. I guess a derm. should be my next doc.visit.

Thanks for all the info, you guys are invaluable. Is there a MCAD forum I could join? Tried looking, but no luck.

Stace915, thanks for the thoughts on Bev. That is what I was afraid of. But when I was feeling real bad a month or so

ago, I was just glad to get near Dr. Grubb. KWIM?

But I'm glad you told me this. This way I won't get my hopes up TOO much.

I wonder how long after I see her, I'll get to see him. Hmmm.

Interesting. Was your doctor %100 sure you had a UTI? Did he find out for sure you had bacteria by culturing your urine? Did you have symptoms? My PCP thought I had a UTI because he saw white blood cells and red blood cells in my urine and suspected it. I knew better (because of my interstitial cystitis), and waited for my urine culture results before starting antibiotics. I was right. I did not have a UTI.

I'm asking because I suspect in me, my "reaction" to certain foods and allergens inflames my bladder. It is called Interstitial Cystitis. It feels like a UTI, but there are no bacteria involved. Maybe it has to do with my bodies' reaction?

In any event, I am on raniditine (a histamine blocker) daily before bed, and hydroxyzine HCL (an antihistamine that also helps interstitial cystitis). The combo keeps me feeling good.

It's possible you do have some allergy reaction going on which exacerbates POTS symptoms?

BTW, antibiotics can make the bladder feel better even if you don't have a UTI because they supposedly have anti-inflammatory properties. I learned this from my IC (interstitial cystitis) forum.

I hope you are closer to good health because of your awareness. Keep us posted.

The gyn just said something about a PH balance? Can't remember exactly what he said, but I think he said that shows the beginning of an infection. The symptoms I had were frequent urination, and one time a little burning.

You're right I should of waited to take the antibiotics. He did say he was sending it out for a culture, but in the meantime gave me bactrim (sp?).

I wonder how hard it will be for me to get a dx of MCAD?

I really do feel better on the antihistamines. I quit all other POTS meds.

Or maybe I'm just going thru a semi-remission. I guess only time will tell, but right now I'm enjoying feeling "normal" So scared it will come back.

Thanks for your thoughts. Is there any easy way to find out if it's MCAD? Of course I could quit the zyrtec, for a while, but no way! I don't want to feel bad again. It's like these days are so precious, I can't even spare one. LOL

I have an almost 5 year old boy. I felt/ feel terrible guilt. I've been sick almost 3 years of his little life.

My DH said to me you've GOT to stop feeling guilty,it's not your fault, you didn't ask for this. When he said that, I somehow felt a little better.

You have to just do the best you can, and let go of the guilt. I know you're sad. I was too, still am some days. But positive energy is needed to fight this.

Hi, and welcome. I don't think for me at least getting a cold/virus has made me any worse.

Mine waxes and wanes, but no real recovery yet.

Not on bc.

I don't know anything about Ehlers-Danlos .

Coconut water is suppose to be very hydrating.

And one more thing I know for sure.....STRESS makes everything worse.

Hope this helps.

But my POTS symptoms are better. Actually better than they've been for a long time. I'm on an antibiotic, but before I even started it, I felt better POTS wise. I am afraid to jinx myself by saying this.

The only other different thing I've done is start zyrtec. I have no allergies at all. But I remembered something the other night.

About 3 years ago I woke up with hives in the middle of the night. For a week or so I kept getting them every night. I just took benadryl & never thought twice about it. They went away.

Now that got me thinking. Hmmm, well I don't ever flush, but I do have some strange spots on my back that have been there for 3 years also. Flat brownish spots. Could be anything, but now I'm thinking MCAD. IDK. It's so confusing.

Hi there When is your appointment. I have an appointment with Bev next thursday. I'm feeling the same way as you(excited and afraid). I will let you know how my appointment goes.

Hi, my appt. is Tues. the 20th. It's a three hour drive so we will leave Mon. night, and spend the night somewhere.

Crap, I don't know what to do. I have an almost (Jan) 5 year old who is in preschool 3 days a week. My husband and I, well actually all three of us got the reg. flu in 2007, and it.was.awful. Thought we were going to die. Body pains were the worst. I am scared of H1N1 too.

5'5" 110 on a good day. Female Always been thin, but not this thin. Before POTS I was usually 117 to 120.

I had two TTTs. And some blood work. That's all.

I am 45yrs. old and got dx with POTS a little over 2 years ago now. I have 5 year old little boy who I love dearly. I feel so sad that his mommy is in bed a lot. I do the best I can, but I am not the mom I wanted to be.

Anyway, I have an appt. (finally) with Beverly from Dr. Grubbs office. I was wondering if she was as good as the doctor, and if she could/would prescribe meds.

From thousands of hours of my own research, I think I have the hyperandgenic (sp?) form of POTS. My standing norephinephrine was 987. I know it is suppose to be 1000, but I think I'm close enough. What do you guys think? I also have tight muscles, & lots of knots in the coat hanger area.

I'm so afraid to be excited to see Bev. KWIM?