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?

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.

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?

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.