Tommyhoney

Nina-

Long distance good vibes, and will keep you in my best intentions......Hang in there, Girl. These are major issues, I know...but you help so many others, all the time, I feel certain that good turnaround will come to you.

My Best,

Tommy

Hi Everyone,

Hope ya'll are feeling OK(or better) today.

So, at the very last minute my disability atty says that she just needs to look up some medical info on dysautonomia. (Really? 3 months after I've hired you?) Anyway, I was sure that I'd seen a very concise, informative post, for just such an ocassion in the past, and I'm having no luck finding it......probably doesn't help that I've freaking out because she hasn't filed the appeal yet.

If anyone knows the post I'm speaking of, or has others they know of, I sure would appreciate letting me know.

Grrr.

Thank-You

Tommy

Hi Everyone,

Sorry it takes me so long, but I just wanted to thank you all for you input.

I have a Neti Pot for sinus rinses, but I just have to get in the habit of using it. I hope it helps me as well as it does ya'll. I hate adding even an aspirin to the mix.

Kayjay- do you use saline for yours?

Thanks again for being here.

Tommy

Hi Everyone,

I have never had big allergy problems before, we've moved to a state where I'm told by the locals that everyone has terrible sinus/allergy problems, Spring especially. I'm feeling really woozy, headache, eyes itchy, etc....allergy symptoms, and am wondering what everyone here takes for allergy symptoms. I am so ultra sensitive to all meds- just curious what your experiences are with these....Thanks for any input you can offer.

Have a peaceful day.

Tommy

Gentle healing and peace to you, Flop. Sorry for all your ills.

Tommy

[size="1"]Gentle Healing thoughts for Nina. Sorry this happened.

Tommy

Hi Lina,

Sorry you're having a hard time with this one right now...

I pool everywhere, not as bad as I used to....there was a time when I would literally look 4 mos pregnant, because my bloating was so bad. Now it comes and goes without apparent reason, and doesn't get as bad as that....I wish I had more info for you... do you wear a compression garment? do you legs pool badly as well?

It seems to me that we're in the minority here with terrible pooling issues. Or I could be missing alot of posts....highly likely with my fog brain...

Thanks Flop- yes I had sweats, belching, etc....all the usual suspects. I the docs decided the ER was the place for me afterall.....everything was fine (of course,) and now I just have to go for a stress test. (hahaha)

The reason I was trying to avoid ER- after Cardio on duty assured me he was well versed in the dysauutonomias- I told him how tachy I usually am, and as I'm lying there supine, he says "well, look your heartrate is only 67."

(Thank-You sir, where do I send the check)

Thank-You Erika.

Hi Everyone,

Hope someone out there is having a peaceful, "feel good" day. I know they are few and far between for most, but love to know that someone's having one.....

So I've been diag'd with Dys. (pots) for two years now. Luckily GI symptoms were managable......but I have noticed for the past year I guess, that I belch more than ever in my life. Even when I wake up, not having eaten for hrs....this is not daily, seems to come and go at will (like everything else)

Over a month ago, I started getting a fluttering at my braline on the left side....thought it too low to be my heart, so must've been muscle, stomach....didn't happen that often so like all of my symptoms I wrote it off.

Now I am having the fluttering more often, sometimes accompanied by a little pain, twinge....and have waken up twice in the past week with hiccups.

My husband is urging me to see a doc, because I so easily write things off too Dysautonomia, but which one? or do I now add a GI to the list? I would be more concerned about it beaing a heart issue.....but am so tired of doctors, and feel so rough right now, not sure what to do.

If it wasn't so difficult to deal with them, I would just go to ER, because the pain is pretty persistent today......Primary Doc, out until Monday, waiting on a call from his nurse for direction.....Sorry for rambling....

Thanks for being here

Tommy

Thanks again for all the knowledge & advice....So I took 1/2 the does of propranolol (.5mg) about 5 hours ago. Did notice less fatigue after shower etc...but increased postprandial hypotension, and now I'm FREEZING (not sure if it's the freezing I get periodically anyway, or from BP tanking) and dizzy. Hmph.

I'm re-thinking the effexor, and considering going back to the Celexa for the antidepressant part. Whichever would be in very low dose, since it's not to treat depression. I will wait and call phys. on Monday for that one. I was on Cymbalta low dose for a few weeks last year- what a nightmare that was for me....so the effexor, the more I read doesn't sound like it will be a good fit. At least I know what to expect from Celexa.

Thanks again for all replies. This med stuff drives me crazy.

Tommy

Good for you, to feel well during your special occasion....I know sometimes that helps me immensely, if I can participate like a "normal" human being, in life things.

umm. 10 mg twice a day, also I take Clonazepam 1-2 mg at bedtime, that's the only med I've been faithful to (helps my sleep) since diag'd in Jan 2008.

Oh, Thanks for the input, ya'll-

@ Firewatcher- glad it's wonderful for you- does it make you drowsy? I guess that's my deal, I don't even take anything for pain because I'm so loopy all the time anyway, from the dys. that I hate to think I'd be even more "useless"

Hi all,

I don't post very often, but watch and learn daily (thanks for that)

I saw my doc last week, and he wants me to try a couple new meds. Propranolol & Effexor. I am very freaky about medications (not a good way to be w/POTS I know) and haven't taken a beta blocker before.

I am going to start with the Propranolol and give it awhile before starting the other- to isolate any side effects I may have- I just can't get myself to take the first one. If anyone has experience with this med or the combination, if you could please let me know about it I would very much appreciate it.

Feeling terrible from the trip to doctor, so maybe less capable of working up the courage to deal with it. erghhh.

Thanks to everyone for being here.

Tommy

I've had this problem off and on....and have been told it's due to the splanchnic pooling.(blood pooling in abdomen) It's one of my least favorite symptoms. Come to think of it I have no favorite symptoms. sorry.

Well, after thinking I had experienced some kind of miracle cure, here I am again.

I keep trying to be thankful for feeling so much better for two months, but all the crazy symptoms seem to break down my ability to do that. I am full of as much despair & disappointment as I can muster the energy for.

Today my bp is tanking on me, I'm freeeezing. I know this is nothing that ya'll don't experience daily, as well, but since my "remission" I guess I have to go through all of the emotions again, just like when I was diagnosed. How foolish of me to be that optimistic....could have saved myself the grief now, huh?! I am trying really hard to keep my chin up, for holidays, for the kids. I've always had problems around the holidays, even before becoming ill, so now it's that much more to be bummed out about.

Thanks for listening, I realllly don't like to talk to anyone about this, but at least typing it out (thinking it out?) to those I know understand, may help prevent a meltdown in the near future. fingers crossed.

Hope ya'll are having a peaceful day.

Tommy

I don't contribute here very often, but just wanted to let all of you know that I am thankful for your support, and input. Hope you have a peaceful holiday.

Tommy

Thanks for your input everyone, I guess that blows that theory.

Tachy P.- Thanks for the links.

I wasn't referring to this forum, a small discussion group I found, had such a high incidence of this , I was curious if this was typical of great number of those suffering autonomic conditions of any kind. With this diagnosis I'm always on the look out for a reason. Not that it would change my situation at all, but then I could at least make some sense of it.

Again, I thank you for your input.

Tommy

Hi Everyone,

I was reading a thread on another site that I found very interesting, and haven't seen it mentioned here.

How many of you were born prematurely? It seemed from the size of the forum and the amount of people who were, that there may be a connection. I may have missed something and this is common knowledge....but now I'm very curious.

Thanks for any input

Peace to all.

Tommy

I feel so bad for you & your kids, try to stay hopeful & strong.

Peace

Tommy

Hi all,

First I'll apologize, I know this topic has been addressed plenty of time, but quite honestly I don't have the energy for a search right now..... I've been on Long term disability for a year now, I paid into my employer (previous) for this coverage. I've been turned down by SSDI, and am waiting (2 yrs I'm told) for a hearing.

LTD company is now doing a review, and one of the things they want me to sign, is to either take a cut in payment now, or agree to pay them the difference when/if SSDI does kick in. I don't understand, when I paid for this private insurance, why this has to do with SSDI at all. Is it time to get an attorney?

Thanks in advance for any thoughts on this.

Tommy

Thanks Maxine, right back at ya with the prayers, sounds like you've been throught the ringer.

They diag'd me w/RA last year.....but now my new Rheumy says "undifferentiated connective tissue disease" that has a nice ring to it I think......I'm afraid to go to Orthopedic about my neck, don't want surgery, and I'm afraid that's all they'll have to offer.

Maxine,

If you don't mind my asking, what specialist did you go to concerning spine issues, at the onset. With all my Pots and Rheum. things to deal with I've been putting that off, but now it's time to address that one too, way too much clunking, and sliding going on.

Thank-You

Tommy

Before we moved north, not quite a year ago, I needed IV's a couple times a month, no matter how much salt I loaded, took florinef, drank gallons of gatorade and water, my body just wouldn't hold the fluids. So I guess I didn't make myself clear on original post. I think I was just looking for a reminder of exactly why I need this? I hadn't had one since November....but my husband can just look at me and tell when I need one.

Lately my Bp has been trending downward, pulse elevating.....so I went ahead and got one yesterday. I guess I get used to things, or ignore them...because I can tell a big difference afterward, bp & pulse head back in the proper directions (pulse still always on the high side) and my skin is softer(my feet actually start looking like prunes when I'm dehydrated) So- Potsgirl, if you can maybe grab an article or post from this sight explaining the reasoning to take to you Dr., it may help you. I have a girlfriend who gains nothing from it, in fact it does more harm then good. Again, so many differences and symptoms with this diagnosis.

Sandyshell, I'm glad your mother was there to intervene. These doctors drive me crazy with their ignorance of this