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Hi again everyone!


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Hi everyone... I'm sorry I've been away soooo long! Actually I guess I'm new to dinet.org and I'm a carryover from NDRF... Some of you oldtimers will know me, anyway.. *winks to Nina* It's been an insane year or two, and finally with some answers to my POTS questions, it hasn't been much of a priority to keep posting... Sorry!!

For those of you who don't know me or haven't heard, Dr. Grubb dx'd me with EDS III in Feb. of 2003. He prescribed Catapres (Clonidine) to help control the tachy along with the usual high-salt, lots-of-liquids diet. I try not to be on Catapres all the time, but when my symptoms get intolerable again, I do go back on it for a few months until environmental factors (heat and stress) back off enough that I can be comfortable without it.

For the most part, my symptoms are tolerable, made more so by the understanding of what causes them and the knowledge that I am, in fact, NOT crazy or just an attention-seeker.

As with most of us, I have several other "weird and rare" illnesses that crop up under stress. I have hidradenitis suppuritiva, and have been having what are probably migraines on a chronic basis for 2 1/2 years. The H-S is rare and, of course, incurable. Migraines aren't rare, but these aren't classic migraines and from what I can gather are actually 2 to 3 different types of headaches that occur simultaneously.

After spending what seems like half my life in search of answers to the POTS question, I'm not all that crazy about tracking down answers to the other problems at this point.

Anyway, wanted to offer a bit of encouragement to those of you who are still looking for your answers - and a word of prayer for Dr. Grubb, who at long last granted me peace of mind and a tool to manage my POTS.

Hugs to all I have missed for so long... hope you all are doing well.


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Welcome, Janet!

Glad to hear Dr. Grubb was able to help you. He sure has helped so many here. Also happy to know that your symptoms are tolerable ... I know what you mean when you say it's easier to deal with them now that you know you're not losing it!


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Guest tearose

Hi Janet and welcome to dinet!

Thank you for saying hi and sending encouragement.

You sound like you are managing your challenges well and I wanted to wish you continued good health.

best regards, tearose

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Hi Janet!

Welcome to dinet! I'm new here myself; I was previously a member of a different organization as well. There is soooo much great info on this forum and an abundance of great people as well. :)

Looking forward to talking with you,


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Sooo good to hear from all of you again! :rolleyes:

Thanks for the welcome from all those whom I have not met before - and good luck with your continued search.

Nina - I read something that indicated you were trying to get feeling back in your hand. So what gives? Are you plying new surgeons with wine just to get back into surgery? I know how much you love the ambiance in the OR. :rolleyes: Give your inhouse medical staff a hug from me, too. :o

Dan, great to see ya! How's the throat action?

Geneva - yes, I remember you! How's your treatment going?

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Yo Janet, will do on the hugs for my inhouse medical staff :rolleyes:

Surgery. Well... That's a big "N" ... "O". No. Right now it's just neurology, pain management and physical therapy. An FYI to you, who share that EDS diagonsis: spinal surgery is probably not a good plan, in general, unless your spinal issue is life threatening or impedes your quality of life severely.

That said, my life was severely limited prior to my two spinal surgeries--I was unable to work, unable to fully care for myself at home, unable to do most daily tasks without difficulty or my legs collapsing under me (Janet, I know you are aware of that part, so I pretty much stated the past sentence as clarification to those who don't know my history).

BTW, you should be glad you live in the south right now! We're in the single digits tonight (farenheit)...or below zero by quite a bit if your in a celsius mood. :rolleyes: I had class tonight and the walk to and from my car was BITTER cold.


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Nina - sorry to hear you're still having trouble with that. Sinuses and all else going ok for now??

Yep, I'm glad I live in the South, but it's still pretty chilly for us sun bunnies down here. We've frozen for four straight days, and that's odd for us. I actually had to wear a sweater today :rolleyes:

Oh - and Nina, I bought *gasp* a POLAR FLEECE cape for this winter. You'd be so proud! :-) You guys - I didn't know what polar fleece was until our dear mouseketeer educated my simple Texan brain ;-)

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Yes, I remember the cold in Toledo, Ohio for our annual pilgrimage to see Dr. Grubb...and in Michigan at our slumber party hosted by Dorothy so we didn't have to sport the hotel costs for that trip. And you were so funny taking pictures of the snow!

I was a step up from polarfleece today--I had on a wool sweater and a down coat--and a polarfleece scarf, hat and gloves--and I was still cold!!!

My sinuses are better than previous years. I've had one or two infections in the past few months, but nothing compared to before I had them fixed. By this time of year I'd have already been hospitalized with asthma and pneumonia; that was pretty consistent for my Nov, Dec and Jan. I have had pneumonia even once since my sinus surgey in 2002...(or was that early 2003?)... time flies!

Hugs to you too. Off to bed for me. Nina

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