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.

Saturday, February 26, 2011

Heat Intolerance

Credit: zenner
As February comes to its end I am beginning to worry about this upcoming Spring and Summer.  There is one symptom of POTS I have not been able to address no matter what I try and that is the severe heat intolerance.  Is this a major problem for any of you?   For me the heat is my main trigger for the tachycardia, shortness of breath and at times even lightheadedness.  Although, I don't have to be standing up for these symptoms to occur if it is hot enough.   Even in the winter if a room or store is warm enough, I become symptomatic too so it is not just an issue with the outdoor temperature.   This is one of the reasons why I like to wear layers in the winter, so I can start peeling clothes off if needed, especially in retail stores.  I've become overheated while walking around a mall and it can get very scary.  One of the worst things is the changing rooms.  Why do those always seem to be so much hotter than the rest of the store?

Friday, February 25, 2011

Stop Attributing Every Symptom to POTS!

When you finally get a POTS diagnosis, it really does not mean anything. Sure it is nice to have a label to tell your friends and family, but you still have no idea what is really wrong. POTS is only a syndrome. By definition, syndromes are only a collection of SYMPTOMS that occur together.

Wednesday, February 23, 2011

Why I'm So Bitter

Over the years I've had a few people ask me an interesting question... Why am I so bitter? The answer to that is simple, I'm not feeling better.

After more than 10 years of bouncing around from doctor to doctor, being completely ignored or accused of using heroin or some other illegal substance, you start to become disenchanted with mainstream doctors. I've been to various different types of doctors and none of them have any solutions to my issues. When one of the "trusted" drugs or supplements fail to give you the expected improvement, then they literally throw their hands up in the air and give up.

Are the doctors I see just bad doctors? I wish I knew the answer to that, but regardless POTS patients are suffering. We suffer on a daily basis and cannot resume normal activities even while on 10 medications and following their salt and water intake suggestions as well as wearing uncomfortable compression hose and raising the head of our bed. Just typing all of that out makes me even more angry. Something is wrong here. These doctors should realize what they are doing is not working. Whatever theory you have used to trial these meds in POTS patients has not panned out and it's time to get back to the drawing board. PERIOD!

POTS doctors are only treating symptoms and in my case have no desire to figure out the underlying causes. In most cases, they are incapable of even controlling symptoms, so they are failing at all aspects of their job. There are always breakthrough symptoms in every single person I have spoken to over the years with POTS. You might see a slight improvement with standing HR numbers, but you still classify with POTS and still cannot lead a normal life. What else truly matters in life?

Once you start mixing medications, it becomes damn near impossible to know what side effects are from what drug. How do you know what is a "POTS" symptom and not a side effect from the new beta blocker you started taking or the new SSRI you have been put on?

It gets to a point where enough is enough and that is why I am bitter. I am sick of POTS doctors treating POTSy like guinea pigs. I did not sign up for this! There has to be others out there that feel the same way as me. Surely not all of you are brainwashed that we need all of these medications especially when they are NOT working?

Monday, February 21, 2011

First Truth: Give Up on the Conventional Docs

Mainstream medicine has failed me. It was not once, but for many years as I bounced around from doctor to doctor trying to figure out what was wrong. Finally I figured out what was wrong by researching online. I then took my diagnosis to a doctor and insisted on being tested. Sure enough, I was right and I was diagnosed with POTS. Thanks for nothing, oh and the medical bills.

Why would I try to get support or help from the same system that had no idea what was wrong with me in the first place?

I tried their suggestions for a while and realize that I was not getting better. At least with the doctors I have seen, once the standard suggestions are exhausted, they have no idea what to do. I look normal and for most doctors that's all they really care about at the end of the day. Some of them still think you have to look sick to be sick. Even some of the top names are guilty of this as it was implied I was "exaggerating" my heart rate increases while standing. Sick.

If you cannot handle hearing the painful truth and the lack of fake hope that most others cling onto, then please stop reading now. This blog is not for you. I am not here to win awards or to make someone with a bad situation feel happy. No I'll leave that to the therapists. I'm here to get better, for real.