Thursday, March 15, 2012

Update: Spring Is Here!

With a nice mild winter, now comes an early spring and I'm already nervous. During the winter months, my POTS is always very very tolerable. Sure my heart rates still get very high when I do dishes, laundry or try to move around a lot, but overall, I feel more calm, more relaxed and more at peace with myself. In the summer, I am pretty much incapacitated. I'm not looking forward to it...

This is the first winter I can remember ever, that I did not have to shovel our driveway or walkway. Not even once... Thank goodness too. A few winters ago, we got a ton of snow in this area. I think for the season we must have had about 3-4 feet. Shoveling all of that snow was awful for me. My heart rate was 196 and I felt like I was dying, literally. I was praying that we wouldn't get snows like that this year because I knew I couldn't do it. Well my prayer was answered.

Over the winter I got strep throat which ended up being untreated. I didn't realize I had strep throat so I never went to the doctors. It took about 2 weeks to finally start to feel like myself again. About 2 weeks after that I noticed my joints were really hurting and I had these weird sores on my ankles and shins. To make a long story short, I had complications from the strep infection. It caused my joints and bones to ache severely. I had developed erythema nodosum which ended up lasting about 6-7 weeks. It was 6-7 weeks of pure hell. The pain was a 9/10. The swelling ended up becoming just as painful as the joint pain. I was miserable.

Through all of this, my heart started to hurt a lot more and I was getting PVC's too. However with POTS as all of you know, it can be very difficult to distinguish symptoms. Where does POTS end and where does another condition start? With all of this, I now have to rule out rheumatic fever. I am getting an echocardiogram done Monday and will be wearing a lovely holter monitor. :)

Hopefully everything comes back fine and no harm is done. As we enter the warmer months, I will likely be dropping by a lot more.

Saturday, June 11, 2011

Investigating Mercury Toxicity As Possible Underlying Cause for POTS

This is an area that few POTSies have investigated and I am going to be one of the first to give it a good run for its money. Searching Dinet's forums for the word "amalgam", there are only 9 posts from its entire history. That in itself is unbelievable to me and those who do ask about it are met with great opposition. I do not really understand why.

One of the posts is a poll I made and interestingly enough 88% of those who responded said they had or have amalgams in their mouth. That seems significant to me. There are of course other sources of heavy metals, but the fact that, that many of us have amalgams in our mouth should at least warrant further investigation. Instead most just do not want to be bothered or they say things like "I'll do that when I start to feel better". What is heavy metals is THE reason why you are not feeling good?

I have been chelating now and I am now on Round 5 of DMPS. I take DMPS orally every 8 hours, but I am not hugely strict in the dosing. If I am a little late or early I take it just to keep from interrupting my sleep.

There have been very very slight improvements with my POTS so far and it is still very early on. I plan on chelating for at least a year to see what happens. My heat intolerances seems a teeny tiny bit better, but I have a LONG way to go.

We will see what happens. I am cautiously optimistic.

Sunday, May 29, 2011

Summertime With POTS: A Hell Most Cannot Understand

Those of you who have postural orthostatic tachycardia syndrome (POTS) know how miserable summertime can be for us. I see the increase in posts on already. A lot of us are really feeling the change in the seasons and it can be rather devastating emotionally. Sure physically it really stinks, but for a good number of us we feel pretty decent during the winter months. Some may think that a new treatment they started in the winter was helping, only to find out that treatment in fact has done nothing for them. This is exactly what I found out years ago when I started going down the hormone replacement path. I started on hydrocortisone and florinef for adrenal insufficiency during April and by June I knew it was doing nothing for POTS. People who repeat over and over again that POTS is simply adrenal issues, have no idea what they are talking about. I feel like smacking them upside the head because NONE of them have ever experienced full-blown, life altering POTS.

Friday, March 11, 2011

Florinef In the Summertime

During winter I do not like to take florinef even though I have adrenal insufficiency and low normal aldosterone levels.  It seems I can keep myself balanced with diet alone and the salt-wasting is not too bad.  However in the summer, I have to take florinef or my BP will go too low.  This is where my adrenal insuffiency and POTS seem to mix a lot.  The line between them is very vague here because lots of POTsies take florinef with great success.  I wish I could say it's amazing me for, but it is not.  Many people with Addison's or Adrenal insufficiency have great success with florinef too.  I really do not see the huge improvements most seem to have with it.  I wish!

Sunday, March 6, 2011

Cooking With POTS

I made this post on my other health blog back in June 2010 and thought it was appropriate to repost on my new POTS blog.  Enjoy!

This isn't about cooking with cooking pots, but with POTS (Postural orthostatic tachycardia syndrome).  I thought this would be a fun considering the lovely pun!

Cooking with POTS is about as difficult for me as what a healthy person would equate to running 5 miles. Getting the pots out of the cabinets takes so much effort. GOD forbid something is still dirty from the last meal and I have to rewash it.  I slowly stand up from the squatting position and walk over to the sink to fill it with water. Once that pot gets heavy, my arms just want to stop holding it because my heart doesn't appreciate this extra effort, so I rest it on the metal lip of the sink. Phew, that makes it a little easier.