Thursday, July 28, 2011

Forgetting HC Doses

Ever since this last round of DMPS, I have been completely forgetting HC doses. I woke up today and I have no idea if I took it or not. I don't think I did, but then I don't feel like I did not. Hmmm Is this is a good sign or am I just getting more forgetful? haha

I think I could probably go down to 12.5mg without any consequences. Something has changed for sure. One day I only took 5mg and did not realize it until 11pm. I am cautiously optimistic. I'm not sure what this means for me right now and I'm just playing it by hear.

Also I should start up on DMPS again here real soon. I never got any hives! I had some skin dermatographia, but I can handle that without any issues.

I should also note that I have been trying a few other things lately. Right now I am taking Body Biotics probiotics. It has definitely slowed my bowels. Maybe a little too much. I am also taking something called Beta-1,3D Glucan. This is supposed to help the immune system. It's all things my husband researched and told me to take. haha!! I am so thankful my spouse cares this much.

Thursday, July 14, 2011

Singing Is Not POTS Friendly, But I Don't Care Anymore

Those with POTS know that controlling your breath for what is needed to sing properly, can be really bad for the heart. Well I do not care anymore and I am once again getting more serious into my singing and vocals. If you haven't been following me for long, then back in 2008 while I was chelating for the first time I started taking some local vocal lessons. They were really pretty awful. In some ways I think I was better than the teacher and all she talked about was breathing. /sigh That's really the only thing these teachers talk about and I can get that type of advice on Youtube. There are hundreds of vocal coaches on Youtube making videos...

Wednesday, July 13, 2011


I have been waiting and waiting and waiting to make this post because I did not want to jinx myself. Well I think I can now officially say I did not get hives with this latest round. This is really good news to me! I will continue at 10mg DMPS from here on out until I am brave enough to raise it again. :)

Thursday, July 7, 2011

Round 6: DMPS Ends

I went a full 5 days and decided it as time to call it quits for now. No reason in pushing this too far. So far, I have no hives but that means nothing. They can literally pop up out of no where, so I am just getting ready. I have been taking my hives regimen throughout this entire chelation round to see if that makes a difference.

My vision is definitely changing. The glasses I wear are pretty old. I've had my contacts prescription changed several times since I got the glasses. Glasses just get so expensive to replace, so I've kept these as my lounging eye wear. Well now I am not seeing the same out of them. I think in my right eye I am seeing better. My left eye still seems quite blurry. When I put my contacts in, I am also not seeing the same out of both eyes. This one is significantly harder to figure out, so I'm going to be heading to the eye docs soon enough. I am due for more contacts and my eye exam is over a year old so I have to get a new exam to get new contacts. I am curious to see what has happened with my eyes. They have been getting worse every year. In the past 3-5 years, my eyes have gotten quite bad. My right eye is -5.75, left eye is -5.25. If anything, I think my right eye is about the same and my left eye is catching up to the right. haha The left eye has the "we think it's a torn vitreous but we aren't sure" and something called "white without pressure". However most places say both are benign. Still makes me wonder about it all at times with my other health issues.

The heat has just been terrible. This is a bad summer for all POTS sufferers out there. I definitely had heat exhaustion the other day and my temps have been well over 99. Earlier today I was pushing 99.2 and that was after getting a cold bath.

I just keep chugging along here. Lately I've been putting almost all of my energy into singing. I want to get really good and possibly make some music. That's been my life's dream for many years now. Now that I am feeling a little better, I am motivated. I think my voice sounds a lot like Sharon Den Adel from the band Within Temptation. She's more comfortable with her head tone, but I'm working on it. My singing has come a long ways over the years, which is mostly self-trained. Those few lessons I took years back were nothing.

Sunday, July 3, 2011

Heat Intolerance Is My Top POTS Symptom

There was an interesting post on the other day. A poster asked us to list our top 5 POTS symptoms that cause problems for us on a daily basis. I was certain everyone would have tachycardia on their list, but that was not the case. How can you have POTS (postural orthostatic tachycardia syndrome) and NOT have tachycardia or heart symptoms on your top 5 list... Am I missing something here?

If you were to list your top 5 symptoms, what would they be? Fatigue? Pain? Gastrointestinal issues? Let me know what all of you are going through. I am very curious to see how different yet how similar we are too.

My top 5 symptoms are as followed:
  • Heat intolerance
  • tachycardia with shortness of breath (when standing of course)
  • anxiety, "crazy" wired feelings
  • shakiness/tremors
  • exercise intolerance
I do not know why the heat is such a problem for me, but cooler weather or air conditioning makes all the difference. In the winter I feel pretty normal and most of the other symptoms listed go away. I still have tachycardia but the heart rates are not nearly as high and the anxiety is never as bad either. Unfortunately exercising is bad because that makes your body temperature increase, so it goes back to the heat intolerance.

Now many people would insist that I have adrenal fatigue and need to go on "adrenal support". No you are wrong. I will continue to repeat this as many times as I need to until I am blue in the face.

POTS is not adrenal fatigue. POTS is not adrenal fatigue. POTS is not adrenal fatigue. POTS is not adrenal fatigue. POTS is not adrenal fatigue.

/Rant on

Do some POTS patients have symptoms that mimic those with adrenal issues? Absolutely, but it does not mean we all have adrenal problems and need hydrocortisone, florinef or "adrenal support". It is simply a THEORY that has been repeated so many times, that people have started to believe it as truth. Those who perpetuate the THEORY usually have never ever had POTS, yet they speak about it as if they are an authoritative source of information. Ugh! :( Believe me when I say it does not go away with some salt, florinef, and hydrocortisone. If it did I would not be here anymore writing on my blog.

/Rant off

Heat Intolerance is a major problem for me in the summer.
Now that it is summer, I really have to be careful outside or even in the house. I get heat exhaustion so very easily compared to most normal people. Today I believe I woke up with the beginning stages of heat exhaustion simply because we did not have the A/C turned on in our bedroom last night. I woke up with a mild fever, headache and nausea. This is one of the reasons why I do not pay any attention to basal temperatures or even daytime temperatures. For me it varies according to the room temperature. Have any of you ever noticed an increase in temps during the summer? If so you likely have body temperature regulation issues too.

When I wake up in this crisis state, it is very difficult to pull myself out of it without intervening with ways to cool my body down as quickly as possible. Cold baths, ice cold water and air conditioning is the only thing that helps. Once my body finally cools down I am good. I feel completely normal and can go about my day. I know that sounds really weird and perhaps I am an usual case, but I always tell people I really do just have POTS. I do not have chronic fatigue syndrome or hypothyroid. If I fixed my POTS, I'd be nearly 100% better.

This summer has been better than previous years, so I am thankful for that. However I still have a long way to go until I will consider myself recovered or cured.

Update 8AM July 4: Things did not go as well as I had originally thought when I made this post. I continued down the heat exhaustion path for most of the night. At one point I was shaking, had goosebumps, throbbing headache and felt terrible. My temperature was running 99.6. I got an ice cold bath, drank lots of ice water and I still was having trouble getting my temperature down. Finally now after many hours after becoming increasingly worried, I got my temperature down to the low 99's, then high 98's and now it is about 98.4. I still have an awful throbbing headache and that likely will not go away until I sleep for the day. I hope I staved off an ER trip. That would be 2 holidays where I made an appearance. Let's hope all of this corrects itself today. Yes we are running the AC tonight too!

Here's a few other posts I've made on this subject.
2012- Heat Intolerance: It's Too Darn Hot!
2011- Getting Through the Heat Intolerance

Saturday, July 2, 2011

Round 6: DMPS Begins

I started ~9mg of DMPS yesterday afternoon. So far no hives at all and I am doing great. I have no idea how long I'm going on this round and will just play it by ear. I have enough pills made up for 7 days, but I don't believe I will do that. There were some warning signs of hives beginning to form at the end of day 6 last time, so I think maybe 5-6 days is where I'm aiming.

One thing I've noticed while taking any type of chelator is that it tends to make my bladder hurt. It feels like a UTI or bladder infection, but there is nothing there. At least nothing that my strips can catch. I used to have this many many moons ago. I think before I even started my blog and to this day I don't even know what stopped it from happening. It may have been Vitalzym? The one time I did have an infection, so I will have to keep an eye on that and go get tested if it gets bad.

I am trying to drink enough water to make myself pee at least every 2-3 hours to flush everything out. In the summer there are times where I don't pee much, but I'm going to make myself keep drinking until I do.

Oh I am also taking 1 pill of EDTA (calcium form) in the AM this round to see if that helps or makes anything worse. Our bathtub is testing for lead AGAIN, so that's fun.