paint-the-moon

Thank you so much for the post ... it did indeed give me a little ray of hope, and I'll take anything I can get in the way of hope with this illness!

Thank you so much for the kind words and understanding. It means a lot just to have someone to spill all this to that understands. I don't talk about my POTS with a lot of friends in real life ... even my husband doesn't know how much I struggle much of the time because I hate sounding like a broken record with my complaints and symptoms. I'm over the worst of the flu/pneumonia stuff now ... but now my POTS is flaring. It's the first time in 6 months that I've felt this awful and non-functioning. Yesterday my heart rate wouldn't go under 110 even sitting down with a beta blocker ... standing up it would soar to 160 and then I kept having PSVT's all day up to around 200. Today is slightly better, but I just feel completely wiped out. Anyway, thanks for listening and for the kindness shown. <3

Forgive me for repeating what I already said in another post ... I'm just too exhausted to type a whole new post but am so needing support. I was feeling really good for most of my pregnancy (I'm almost 8 months now) ... everything has gone just perfectly. The first couple months were really rough with the hormone changes and having to go cold turkey on about six medications at once, but then things really improved. I haven't even visited here in the last six months because I was feeling so close to "normal." Then my husband brought back an awful flu bug from a business trip. My body finally caught it after a couple weeks (my four year old had it for a week before me as well, which I spent up all night taking care of her and comforting her). I've been deathly ill for the past week now, and it just seems to get worse every day. It turned into pneumonia then add in a sinus infection and now bronchitis. Really??? It feels like a big practical joke ... especially after this morning when I was coughing so violently I tore/pulled an abdominal muscle (already stretched to the limit). Now every time I cough (which is about every other minute - I have no voice left), my stomach muscle screams. I can't even lay down and be comfortable ... everything aches, I can't breathe (POTS related), my heart is a mess (I'm back to doubling my bpm upon standing again - sitting I'm 70 and standing 155 ... WITH a beta blocker) and I keep violently coughing every couple minutes. I was already fearing what my body would do after the delivery, whether I'd crash again and be back to being bedridden and unable to care for my baby girl and little girl properly. But now with this barrage of attacks on my already fragile body, I fear I'm just not going to recover. My POTS has gone back to square one after so much progress. I was even up to being able to do a light jog for short periods!! I have worked so hard on keeping healthy and building my strength back up. Now, once again, I'm struggling so much and haven't slept more than two hours in a week ... and I have a little four year old girl to take care of on top of everything else (and hubby just left for a week long trip again this morning).

Hopeless. Was feeling really good for most of my pregnancy (I'm almost 8 months now). I haven't even visited here in the last six months because I was feeling so close to "normal." Then my husband brought back an awful flu bug from a business trip. My body finally caught it after a couple weeks ... I've been deathly ill for the past week now, and it just seems to get worse every day. It turned into an pneumonia then add in a sinus infection and now bronchitis. Really??? It feels like a big practical joke ... especially after this morning when I was coughing so violently I tore/pulled an abdominal muscle (already stretched to the limit). Now every time I cough (which is about every other minute - I have no voice left), my stomach muscle screams. I can't even lay down and be comfortable ... everything aches, I can't breathe (POTS related) and I keep violently coughing every couple minutes. I was already fearing what my body would do after the delivery ... but now with this barrage of attacks on my already fragile body, I fear I'm not going to recover. My POTS has gone back to square one after so much progress. I'm struggling so much and haven't slept more than two hours in a week ... and have a little four year old girl to take care of on top of everything else (and hubby just left for a week long trip again). Sob. Yes, hopeless is the word for me right now.

I love the spoon theory too. When I first read it to my husband though, he said, "Great, now all I'm going to hear is stuff about how you don't have any spoons left ..."

Can you give me this nutritionist's name? I'm in Oregon as well. Thank you!

I gave it a go for a week before insisting I be switched over. I think was on 400mg a day (divided in two doses). No side effects except possibly more fatigue - but that could be because it wasn't controlling the tachy, which leaves me exhausted (up to 190bpm every day).

Labetalol didn't do a thing for my tachy or my palpitations. My OB wanted me to try it out since it's so well researched for pregnancy, but we ended up switching to Toprol XL instead. It's not working as well as atenolol did for me with the tachy and palps, but MUCH MUCH better than Labetalol. I literally didn't feel any difference on it at all.

I had the same problem until my chiropractor told me that I should be raising it from the frame, not just under the mattress ... it makes an even slant then and not "bending" your body in the middle. We have concrete blocks underneath each of the feet of the top of the frame on our bed.

I experience the same thing. In the morning's my pulse will go from 65 laying down to 140 standing ... blood pressure goes from a normal 100/60 to a narrow pulse pressure at around 90/75. I have many days where the pulse pressure has been less than ten points - so 90 over 82 isn't too shocking to me either. All I can do is take my beta blocker (that's all I'm on now that I'm pregnant), down some water and load up on salt. It takes me an hour to get up out of bed every day. Oh, and compression stockings are a must for me as well (HATE those things, but am completely dependent on them now much to my dismay).

Oh, I understand his perspective as far as prescribing meds to a breastfeeding mother. I never took anything that Dr. Hale did not recommend for a nursling (I talked to him personally about each medication, and when I started all of my meds my three year old was already down to only a few short nursings a day). I have no problem at all sacrificing my own body to be without meds for my new baby ... nursing is *very* important to me (and my little girl! ). It's a lot different taking medications with a newborn nursling versus a four year old. He's actually a nephrologist first ... POTS specialist second. He's the doctor mentioned in this article ... http://www.bendbulletin.com/apps/pbcs.dll/...05310408/-1/rss. I can not for the life of me find another doctor in Oregon who knows anything about dysautonomia. We drive four hours to see him.

I think maybe he's too used to dealing with adolescents with POTS who most of the time seem to outgrow it. I don't really know how many cases he has of adult onset POTS/NCS that he is treating. He's very kind, seems very knowledgable, but is also very quick to just throw me more meds every time a new symptom comes up. He had me on eight different prescribed meds at one time (I never told him I wasn't trying all of them - it just seemed like overload, how would I know what was working and what wasn't?). Now he's completely useless to me while I'm pregnant, and he's admitted as much to me. In fact, at my last visit he said, "Well, come back and see me when you are done nursing in five years (not a big fan of the fact that I'm still nursing my four year old )."

Julie, I really like what you are saying here ... but what do you suggest when your doctor pretty much laughs at you when you bring in new ideas for the cause of your POTS? Last time I was in my POTS doctor's office I asked him about running several tests, including Lyme, and he actually told me that I was "chasing after a leprechaun at the end of a rainbow" trying to figure out WHY I am so sick.

A good friend of mine recently wrote me this letter after I expressed to her how guilty I felt for not being the kind of mommy I used to be to my little angel. It was really inspiring to me.

I'm also taking B-12 and folic acid ... doesn't really do much to help. Of course, maybe I'd be worse without all the supplements, who knows? Beta blockers are also known to contribute to or worsen RLS as well as insomnia. I can't tolerate taking mine in the evening.