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 ..."

This sounds very much like the Heart Rate Variability testing I had done by the nutritionist guy I saw. It was the first real "proof" that something was not right with my ANS. It measures your heart rate for about 500 beats split between lying down and then standing up. My test showed that my parasympathetic system was not regulating properly, especially when I stood up. My doctor said he had never heard of this and gave me that look like is this for real? I know for a fact that they use this same type of testing at one of the Mayo clinics cause it was on the story someone posted of a teenage girl who kept passing out all the time and all the stuff the went through to get a DX of NMH. Some of you might remember that post some time back! Anyway, I would love to hear others who have had the HRV test done and know if they too had a detection of a ANS in dysfunction.

Have a good weekend everyone!

KC

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.

Mornings are the worst time for me until I have had a few drinks to get hydrated.

The main issue seems to be low blood pressure which is usually less than 90/60. On rising the pulse shoots up by 40 or so, and the already low BP numbers get closer together, until there is very low pulse pressure between them-so 80/65 is not uncommon for me,when I first stand up.

Does anyone else have this low blood pressure after a night in bed, and what if anything helps to avoid it falling too much? When I go to bed it is often not too bad-110/60 is quite common, but a night lying flat seems to cause it to drop like a stone.

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).

I do understand his concern about your nursing, but from a different perspective: he can't possibly give you anything that might help for fear of it passing into your breastmilk and giving it to the baby. I had to nurse my second son for an extended period because he is anaphylactic to dairy. I could not eat any dairy while I nursed him either, since the protein passed through.

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.

Yeah, they used to say that Giant Squid didn't exist until they caught one! Your doc sounds tired of looking. Every disease has a cause, whether we can do anything about it once we've got it is another story. I'll go leprechaun hunting with you anytime!

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 )."

Be sure that you've explored WHY you are the way you are, before you settle.

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.

My mom was diagnosed with Systemic Lupus when I was very young. She is literally allergic to sunshine (can you imagine?) and has multiple symptoms, mainly arthritic conditions and most recently has developed Diabetes. She had periods of extreme illness when I was young, and wasn't well enough to participate in many things in my life. I guess I tell you this to ultimately tell you that, in the perspective of the 'daughter', none of it mattered to me. I mean, I always worried some about her, but what I remember the most and still cherish today is that she always loved me. With a passionate love. And, at the end of the day, Love conquered all.

I pray that these days will soon become a memory in your life and you can spend your days doing all that you desire with your beautiful family. You are an incredible mom and wife and I see that anyone who has met your acquaintance is better for it.

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.

One of the great things about swimming where we do is the heated pool (and nice, warm room the pools are in) ... it's like stepping into a bath tub (a not too hot bath tub). Otherwise, I'd be freezing and shaking too, tearose!

This is happening to me on a nightly basis now (12 weeks pregnant). I've had it for years, back when I was 12 I remember getting it. It's AWFUL. It's gotten so bad that my muscles actually seize up and twitch now. I was up last night just laying in bed crying until 4am. Every night I go to bed dreading it ... I would get up and walk around, but my heart gets so bad at night that I can't do that. I am getting it in my arms and hands as well as my entire legs.

I take magnesium and potassium as well as iron supplements, get moderate exercise (as I am able) during the day, don't do any kind of caffeine at all, try to practice good sleep hygiene (this is a big one for me ... because the longer I lay in bed before actually trying to sleep the worse it gets), try yoga and meditation with relaxing music, I wear ear plugs and a sleep mask and have to have the right temperature which is a tough one. I am either freezing, so I'll turn on my space heater next to the bed (no electric blanket with a little one in bed with me and being pregnant) ... then I'll wake up in a puddle of sweat. I can never get my body at a comfortable level.

Before getting pregnant I was taking .25mg Klonopin at bedtime, and this seemed to alleviate the RLS for the most part. Oh, I miss that relief!!! I can't imagine another 6 months of this ... well, make that several more years because I won't want to take with a nursing baby either.

I have to have my feet touching the foot of the bed so that I can flex my legs over and over when the creepy crawlies get too strong and I am just too tired to do any other kind of movement to relieve it. It *****!! I totally empathize with you!

I think the problem with swimming is that because it feels so easy we overdo. Give swimming a try, but stop after a couple of laps and then wait and see how you feel the next day.

Swimming is great for helping constrict my blood vessels and get the pooling under control, but really tough on my heart. I think it's all the breath holding that does me in sometimes. I can go for a long time on the recumbent bike or inclined treadmill at a good speed, but swimming for only 10 minutes sends my heart into flip flopping overdrive.

We've also got a little support group just starting on Facebook if you are interested.

http://www.facebook.com/home.php?filter=nf...1639&ref=nf

I'd be interested in a Facebook group still. I just can't get into the Yahoo groups. If anyone is interested in Facebook, I started a group ... link at:

http://www.facebook.com/group.php?v=app_23...id=213495911639

There isn't anything there yet but a blank page, but if people are interested I'll help get it started!

I've been super thin my whole life and now have a huge muffin top and have gained about 20 pounds since starting the darn meds last summer. Even now that I'm off everything but the beta blocker, it's sticking to me. Of course, I'm not trying to lose now since I'm preggers, but I really am trying to get fit and help build muscle in my legs especially.

I have the same thing happen too. I get so starved for oxygen that talking is out of the question ... I'll get really lightheaded and out of breath. The worst is when I'm trying to read to my little girl and have to gasp for air through the whole book. It's an awful feeling, being wiped out from simply trying to talk!

YES! That is me! I drive my husband crazy all the time. And I've been like that for as long as I can remember.

I would love to join in too! I'm 10 weeks pregnant with my second baby and am really struggling to keep exercising with the POTS symptoms flaring and pregnancy crud on top of it. But I have found that it really does make a huge difference in how well I can function when I keep with it.

If everyone is cool with this, I've set up a group on Facebook that is private ...

http://www.facebook.com/group.php?v=app_23...id=213495911639