Email to June at TCI

Here's my recent correspondence with June at TCI:

June,

I have faxed over my DEXA scan and my blood work from January and February. I hope you have received them.

I'm still having good and bad days, but overall my symptoms are still terrible. My instability symptoms persist, with instability headaches waking me up at night. The nausea has worsened significantly this week. Some days, I can barely get anything down. Sometimes, I can only swallow food when my body is actually horizontal, or I will gag it back up. Hopefully, this symptoms will pass or reduce soon, because I'm not getting adequate nourishment right now. I will have to start supplementing with Ensure.

I have been blacking out more often, and the shortness of breath was so severe that my local cardiologist and my POTS specialist sent me to the E.R. for testing. Of course, my heart and lungs were functioning fine. They said I was just suffering from sinus tachycardia, where even my resting heart rate wouldn't go below 95 bpm, and this was causing the shortness of breath.

But each day has different challenges. Some days the nausea is the worst, sometimes the headaches, and sometimes the shortness of breath and passing out. Some days, it seems like everything is wrong, like this weekend, when I've been completely restricted to bed except for assisted bathroom trips.

My next scheduled doctor's appointment is April 26th with Dr. Camacho, my endocrinologist. I will ask her to order my next DEXA scan at that point. I plan on getting it done as soon as possible after that appointment. Then, I will send the results along to you.

Should I consider scheduling an appointment at TCI for sometime in May? If so, what kind of appointment would I request? I just don't want to have to deal with too much of a wait for an appointment. What would be the best thing to do?

Thanks so much for your ongoing help.

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Hi Carolyn,
I got your January DEXA scan. I compared it to the one done on 3/2008: there was a slight worsening. I don't remember when you started treatment. So let's see what the next DEXA scan in April will say. Hopefully if it is improve, you can go ahead with the surgery.

I guess you can come for a visit in May. You usually see Dr. Kula, correct? You may need to book now because sometimes he is booked up fast. If the DEXA scan is normal and if Dr. B says OK, you might want to book for surgery too. You can't book for surgery until the DEXA is normal and/or Dr. B says OK.

I don't know, do you want to wait until the result is back or make the appoiment with Dr. Kula for May?

Please let me know,
June

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June,

Thank you so much for responding. Dr. Camacho ordered the January DEXA scan as a preliminary scan. It was performed only 3 weeks into my treatment, so for her, it is considered the "before treatment" test. My next scan will be done at the end of April or the beginning of May, and hopefully that one will show improvement.

The reason the osteopenia got worse from 3/2008 to 1/2009 is that I was untreated during this time. I was not able to find a doctor willing to treat my osteopenia for 8 months, which gave it time to worsen.

I don't feel that I need another appointment with Dr. Kula at this time. I think the next time I come in, it will be to see Dr. B for surgery. So for now I will wait on scheduling any appointment.

Thanks again.
Carolyn

Bedbound weekend

I had a good week. I got a lot done, and visited with family, too.

This weekend, my instability symptoms became unbearable. Friday night, I developed the worst instability headache. It kept me awake in agony the whole night, with very little sleep. All day Saturday, every time I sat up, I got sickening waves of nausea. I couldn't eat anything except a bit of pudding all day. I tried eating other foods, but I can only eat while lying flat, and I have to be able to digest that food while horizontal...always a challenge. Also, I have to find food that seems palatable when I am so nauseated. So for Saturday, it was only pudding.

Overnight last night, the headache was not as invasive, but I still had several hours in the middle of the night where I was wide awake and incredibly uncomfortable.

Today, I made it over to the couch to watch a movie with Gus. I ate my cereal for breakfast, but the waves of nausea are still strong when I sit up for more than a minute.

I really don't know how long this severity of symptoms will last, but as long as it does, I won't be able to drive, work, or even eat and take care of myself very well. But I lived for so long with these symptoms, that I fear that they could last until surgery, which still has no set time.

The only dates I have to look forward to are April 26th, when I will see Dr. Camacho, who will order my next DEXA scan. If this scan can confirm that my bone density is improving, then I will make an appointment with The Chiari Institute in New York. They know about my current condition, and they understand that surgery will be needed a.s.a.p. Maybe I could try to make the appointment ahead of time, to be sure there isn't a long waiting period. I just don't know the exact dates I would want for an appointment...especially if the appointment and surgery are all in one trip.

I just so desperately need things to get better soon, somehow, someway. It's so hard to live like this.

Cardiology and drop attack

I saw the cardiologist this morning. He couldn't come up with much to say. He said I'm suffering from bouts of sinus tachycardia, that seem to last all day some days. But that there is no structural reason in the heart responsible for this. He said that either the tachycardia is causing the shortness of breath, or the shortness of breath is causing the tachycardia. To find out if my lungs are functioning well, I am to schedule pulmonary function testing. I'd rather have the stress test he mentioned, since my symptoms are worsened by exertion. But for now, just the lung function testing that we'll set up sometime. After the appointment, I sat in the waiting room while my mom checked out. And I started zoning out, and when I stood up, I had a drop attack right there in the office. This is not a strange occurrence for me, because I have drop attacks every few days. But it was ideal for it to happen with nurses there to check my stats. They found that my blood pressure had dropped by about 20-30 points from my bp during the appointment. (It ranged from 120/60 to 110/72 in the appointment, and after the drop attack, it was 90/--) My heart rate was actually lower, probably because I was lying down. But my O2 stats were still great--98/99%. It's good to have these on record for right after a fall. I recovered quickly after drinking several glasses of water. I had been complaining about my thirst, so I was probably a bit dehydrated, which always makes fainting more likely.

I was stuck in bed all day yesterday with severe nausea and fatigue. I barely moved all day. Less fatigue today, but still severe nausea and reflux. Obviously, I still have to be careful about my blood pressure, too.

I wish someone at Dr. Grubb's office could help me out with all of these POTS symptoms right now. But I kind of doubt there's much he could do. My problem is a stuctural problem in my brain...not much can be done about that...just SURGERY. Just gotta keep waiting. The rest of this is just filler. I hate being patient.

Takes my breath away

So, on Friday, I heard back from all of my cardiologists and went to physical therapy. Every single doctor told me that I needed to go to the emergency room to find out what was going on with my breathlessness.

So, we spent the evening in the e.r. They did every standard heart and lung test they could come up with. But really, as soon as we got there, they gave me oxygen, and I got to lay down in a bed, so I felt significantly better from that. My mom said that my face and lips had more color than they'd had in weeks. My lips are normally light pink and even a little blue. With oxygen, some of that paleness went away and my lips turned pink. The e.r. doctor said that this was meaningless, because the oxygen saturation level on my finger was 97% or higher. So, she said there would be no reason to consider a portable oxygen unit. However, I'll be seeing my local cardiologist, Dr. Jobski, on Friday, and we'll see what he has to say.

I'm also considering a local POTS specialist, Dr. Janice Gilden, since Dr. Grubb's office says there's nothing they can do for me two states away.

There's a new pain management doctor that's been recommended by a new friend, so I'll keep that in mind as well.

Until then, I'm still out of breath whenever I'm not lying down most days.

However, I had a nice weekend. On Saturday, I took my provigil (which is supposed to keep me awake), but still felt so fatigued that I fell asleep anyway. After a nap, I felt pretty good. I still had breathlessness when standing. Overnight Saturday to Sunday, I had a horrible headache (an 8), which included sharp pain above the eyes, pain with movement, and constant nose dripping (probably a leaking of excess spinal fluid). That headache lasted throughout Sunday and Monday, despite treatment with Darvocet and Vicodin. I also took provigil, since I'm trying to take it daily, as prescribed. So, that gave me a fair amount of "artificial energy" to enjoy Medieval Times, where we went for my brother, Rob's 21st birthday. By the end of the day, I was exhausted, and I have been ever since.

I feel that the Provigil makes me "overdo it", using up all of that fake energy. It is followed by pure exhaustion and pain all over my body.

I don't know what to do about it, but Dr. Grubb's office says to give it a full month to work...I'm trying, but it just might kill me (presumed exaggeration). But I would like to point out that the shortness of breath began several weeks before I started taking the Provigil, so the Provigil is not the cause of the breathlessness, but it could be contributing to palpitations and tachycardia.

Gravity: my nemesis, and distractions

So, yesterday, I lost consciousness twice. I was out of breath quite a bit, even while lying down at times. It was so exhausting. When I came home at the end of the day, I just couldn't get enough oxygen in and collapsed. I was still gasping for breath when I awoke. The traction was the only thing that helped. Unfortunately, traction only helps me for the time I'm in it, which is no more than an hour and half a day, usually once before work/activity, and once after, no more than 45 minutes at a time. The rest of the day, I am not helped at all. So it is not exactly a treatment, and it doesn't make my active life any easier. It just gives me a chance to feel better lying flat on my back for a short time each day. I am thankful for that relief, but it is not an answer.

Also, while I'm in traction, sometimes the weight is right on my titanium rods, which can be really painful, but it is worth it for the relief of other symptoms.

Now that that is all cleared up...I do have physical therapy today. And it will be a challenge, because I am very short of breath today. We'll see how she handles it. I'll be wearing my heart rate monitor, so she can see just how wacky my heart really is. We might get to go in the water, too! That would be great for me, because I know how much easier it is to function without the strong pull of gravity. I wish we all lived in a waterworld. Except for the fact that I can't swim too much anymore, since I'm not supposed to turn my neck. That ruins almost every stroke...I never was a good back-stroker.

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My distraction for the day:
I have a few notes on American Idol to share with anyone interested:

Group 1: I love Danny Gokey. Michael and Alexis are fine. I would have been happier with Jackie Tohn and Anoop Desai.

Group 2: Adam has "mad talent". Allison and Kris are alright. I think Matt Giraud and Mishavonna should have been in there.

Those are my thoughts so far. Anoop and Matt G. are my favorites for the Wild Card show. I really hope they come back. Jackie and Mishavonna would be nice, too.

Thanks for listening to my unrelated and unimportant thoughts.

Provigil, Pronex, PT, and POTS

I started the Provigil on Saturday. It is supposed to fight fatigue and help you stay awake. For me, it seems to cause me to be really really hyper and restless and talkative. It's the same reaction that most people would get with WAY too much caffeine. It's actually very similar to a manic state. It's hard for me to be on...it's very tiring. And it's pretty tiring for the people around me, too. (Sorry to Gus and Chris and Rachel.) I kinda wish it were possible to take an even smaller dose. My system is just so sensitive to stimulants (Picture me after one can of coke....I'm bouncing off the walls.) So, after it wore off, I completely crashed and every cell in my body hurt. I couldn't move for a solid 14 hours. So, I still wonder if they prescribe any smaller dose that I could try. Otherwise, I don't know how this would work on a regular basis. A lot of people have said that I just need to get used to the medication. But I am not anxious to jump into that manic state again.

I just got my very own Pronex traction unit, which I love! In the past, I haven't been able to afford it, because my insurance company considers it an "experimental" treatment. So, I was lucky enough to buy one from a friend who no longer needs hers. I love it so much, that I could see getting addicted to it. It provides temporary symptom relief, since it simulates fusion position by extracting the head further from my spine.

I'm not so sure about how much I should be wearing my aspen collar right now, because it seems to keep my neck in an unnatural position, and I think it actually causes muscle spasms! So I have to figure out what to do about that. I think I should stop wearing it for a while.

I am in physical therapy now. My PT is Anna. I had to explain chiari, EDS, and POTS to her, but she is willing to try to help me out. She's just said that she doesn't know how much she'll be able to help me. Maybe the water really will be the best place for me. We'll see.

I'm still having trouble catching my breath. It is a sign of my POTS becoming very severe. My mom called the POTS office, but they called back with worthless information about continuing my Provigil for a full month before I complain. But Provigil does NOT help treat symptoms of tachycardia or shortness of breath...only fatigue. I wish I could just talk to someone directly instead of leaving messages back and forth. I'm really disappointed in them right now. Hope for some more help to come from them, soon.

Out of Breath...

This is so exhausting. For about 3 weeks now, my heart has been pounding extra hard and fast throughout the day. In addition, I've been really out of breath. I just can't catch my breath. It gets worse whenever I have to sit up, stand, move around, or strain. It makes sense that the original names of POTS were "Irritable Heart Syndrome" and "The Effort Syndrome". Because my heart is over-reacting to everything I do, and I get out of breath with even a little bit of effort.

These are common POTS symptoms. I just haven't had them this severe before. We called Dr. Grubb's office today about this worsening of symptoms. Who knows when we'll hear back, or what they'll have to say. I know there are more intensive treatments, but I don't know if I'm really a candidate for them.