Newbie Asking Questions :)

[Bears Mommy]

Hi everyone. I really hate being a newbie on a board. I’ll try to make it easy and do a short version and then give anyone that has patience enough the long sob story.

Short version: I’m a 5'1", 95 pound, 34 year old woman. I’ve had symptoms since I was 13. My symptoms sometimes are unrelenting, sometimes barely noticeable. Symptoms include fainting, dizziness, digestive issues, low blood sugar (tested as low as 56), low blood pressure (mainly low diastolic - it ranges anywhere from 49-80 depending on many factors - but it hovers around 60), fatigue, vomiting (mostly morning - I can only drink coffee), almost constant nausea, constant dehydration, sleep issues, tachycardia, shortness of breath, weakness, menstrual irregularities (often I have menorrhagia), low body temperature, swollen glands, pooling of blood in my feet when I stand, intolerance to cold (I sit in front of a portable heater all the time), intolerance to extreme heat, occasional tremors, sensory overload issues, and more that I can’t remember at the moment.

I’ve had some testing done (holter, stress test, echo, thyroid, cortisone, blood metanephrines, A1C, blood glucose). I was told I have mitral valve prolapse, and hypovolemia. It was suggested that I start a high salt, high water diet and given fludrocortisone. My cardiologist told me to come back in a couple months and we would go from there. I wasn’t given a diagnosis and I’m really not sure what to do from this point on as far as medical stuff goes. So my question is what do I do now…?

If you want the long version keep reading – lol.

When I was thirteen I fainted and had a seizure. It was pretty bad. Since that time I have suffered from severe vertigo and fainting all my life. If I hurt my fingers, got too hot, didn't eat well, got too emotionally stressed for too long of a period (say months) I could pass out. Heck, sometimes I can’t even take a shower without sitting down. My symptoms are always much worse around my period.

The problem is that the symptoms come and go. When I was working 3 jobs, (one of them overnight, one emotionally stressful), TTC, etc - I would pass out at least once a day. But it wasn't true passing out most of the time. I would loose consciousness for 1/2 second or so (enough so that I couldn't retain my upward position) and would end up on the floor - but I would be okay because I regained consciousness before I hit the floor so I was almost always able to catch myself. There were times I would land on the floor though without waking up first.

I’ve been pregnant four times. When I got pregnant the syncope got better... I did however have hyperemesis gravidarum (throwing up 30x a day) and preterm labor. I now have two children. The symptoms returned after my second child stopped breastfeeding exclusively. I had a late 1st trimester miscarriage in February 2010 and hemorrhaged pretty badly. I was anemic for months. My symptoms have gotten really bad since my miscarriage. I passed out (momentarily) last summer while I was in the car (my kids were in the back). I pulled over just in time and was able to black out right after I parked the car. I don't have to tell you that it was really scary.

I started (once again) slowly searching for answers. I got super concerned last November when we joined the gym. I got on an elliptical machine and my heart rate registered well over 200 bpm after only 10 minutes of light-ish exercise. I was sent to the cardiologist and had a full work up done. I had a stress test done and yes my heart rate went very high with exercise. I had a holter monitor for over a week and everything looked relatively normal except for an elevated heart rate. I had an echo and found out I have mitral valve prolapse (something I wasn't told until a couple weeks ago by my primary physician).

The cardiologist gave me a Fludicort and told me to up my salt without telling me why, and only seemed to me to be concerned about the syncope and not the tachycardia which really frustrated me. He told me to go get my cortisol tested first before taking the fludicort and then come back in a month or two. He didn't tell me much else. He mumbled something about doing a ttt, but that they aren’t always conclusive. I was so frustrated that I didn't get my cortisol tested and I didn't take the meds. I just was so frustrated that he didn't tell me why he gave me drugs and didn't give me a diagnosis - my stubbornness got the best of me and I just ignored everything… dumb, I know. But I've been dealing with this pretty much my whole life with doctors just brushing me off so that's what I thought he was doing.

I got worse over the winter. I didn't realize how bad I was getting. I am now having increasingly bad vertigo again. It's so bad that when I’m sitting or lay in bed I feel the room spin and feel lightheaded. I started exercising again at home this last Jaunary and was feeling a little better for about a month (even though it would wipe me out for the rest of the day) - but then one week I overdid it, the next day I went to the Mall of America and walked around for a long time. I got sick, got my period, a few weeks later got my wisdom teeth out, got my period again, then got a UTI, had a horrible reaction to the meds. After that succession of events my symptoms were as bad as they ever were. I passed out in Target, passed out a home a couple times. I can't clean the house or do a couple loads of laundry without feeling so bad the next day I just can't function. My mind gets fuzzy and my body is so weak it's hard to pick up a basket of clothes. The fatigue is honestly the worst it has ever been.

I hate doctors. They never take me seriously. I’ve been given Dramamine, anxiety meds, and completely brushed off. I ended up talking to a few doctors about various things during this last month. Once was during my horrible reaction to some meds - I went to the ER. The ER physician told me about Addison’s and thought I should be tested for it. That scared me enough to go back to a doctor. A brand new family physician FINALLY took me seriously and mentioned POTS to me(I love him BTW - made him my primary that day). He told me the cardiologist must have suspected POTS and that is why he gave me the Fludicort. He then referred me to an endocrinologist to get my cortisol tested as well as some other tests. All the endo tests came back negative.

So now that I know I don’t have Addison’s or any other weird thing I started on the Fludicortisone (four months later after I was given the prescription) and doing what the cardiologist asked me to do. I’ve been on it for four days and started the high salt/high water diet. I’ve been pushing myself to do stuff – but not too much. I’ll start exercising soon (even though it might kill me), but I’m starting on housework first – my house is a disaster.

I’ve been doing tons of research and I’m not sure I have POTS though. I have a heart rate monitor. My resting HR is 64 when lying down. When I stand up my HR initially skyrockets then slowly goes back down to the 70’s or 80’s. That doesn’t seem to match with POTS. But when I sit it’s in the 80’s. When I start walking around the house it goes up in the 100’s. When I take a drink of water it goes in the 110’s. When I lift my daughter up it instantly goes into the 130’s. When I start doing aerobic activity it almost instantly is in the 160’s to 170’s and finally when I get on the elliptical machine I goes above 200. Obviously something isn’t right.

I just don’t know what to do from here. I don’t know what to ask of my doctor or what doctor I should go back to. Any help at all would be appreciated. Thank you!

~heather

[HopeSprings]

Hi. If I were you I would want some official autonomic testing done. Definitely the Tilt Test. Where are you located? Maybe you can check the Dinet list of Doctors and see one of those ...or someone here can recommend someone good in your area.

[Bears Mommy]

I'm in Minneapolis. I live near some pretty big hospitals with some pretty big heart centers. I went to a major heart center at Mercy hospital to do most of my recent testing. I know that I live near the Mayo (in fact my BIL interned here as a nurse practitioner). But I know the waiting list is long to get in. It is also 150 miles away and so I wouldn't be able to make anyone there my primary.

I know that you can do the TTT, but what other tests are done?

[kclynn]

I just talked to someone yesterday who just called Mayo and is getting in in a month. She has a history of NCS and had sent the most recent tests to them. I believe she is going through Cardiology. Call them and get started. A month or two is not too long and since you live so close you could easily pick up a cancellation.

[Godsgal]

Hello....I think the TTT is THE diagnostic tool for POTS. The autonomic testing would include this as well but you usually have to wait to get in for the autonomic testing.

For people with POTS, the best exercise is done sitting. If you want to exercise maybe a recumbent bike or rowing machine. Due to the blood pooling, prescription grade compressions would likely greatly help you. I wear them and I feel great with them on. I'm 5'1" too. Wow you are tiny! I'm 103 and people give me a hard time over being too skinny! Do you have trouble tolerating many foods? I know you mentioned the vomiting. Do you have any flushing? And no beta blocker for the heart rate? I would definitely try to find an EP (electrophysiologist) that is very familiar with POTS so you can get help.

You asked specifically what to do. Get the tilt table test. Drink tons of water/gatorade/broth and increase your salt. Avoid exercise standing. Get the compressions. Don't take hot showers. Check the home page of this forum and review the list that shows what to avoid. Get your PCP or cardiologist to order the tilt table test but it does need to be with someone that knows what POTS is. Check the doctor list on here as well. Hang in there! Keep searching for answers and don't work yourself too hard around the house or exercising!

Take care of yourself and welcome to the forum! Feel free to ask any questions anytime

[Sallysblooms]

Tilt testing is what most docs like. I was way too ill for it so I took other tests. Tilt testing can vary daily so I didn't want to go through that.

Welcome to the forum!

[houswoea]

Hello! I live outside of St. Paul! We're like neighbors!

St. Paul heart clinic was where I got my TTT. It's in United Hospital now, I guess? Since they merged or whatever. Anyways. They have the equipment, if you're still looking.

They weren't my most favorite doctors. INCREDIBLY sweet and patient and caring, don't get me wrong. They diagnosed me. They just weren't sure what to do with me after that But they tried, so props to them for that.

[Bears Mommy]

So you all think that I really should go see a specialist for this and not stick with my cardiologist that I saw before? (not that I liked him that much). The University of Minnesota seems to have a few doctors that on another website are recommended. I've had pretty good luck at the U of M before with my husband and my son. Maybe I'll try to give them a call - or should I talk to my family doctor first since he knows about POTS?

I guess I was also wondering if I even had any legitimate concerns about having some form of dysautonomia. I think I'm being treated for it, but I'm not sure.

Godsgal - I am pretty thin, but I am super small boned so if I go over 100 pounds I start to put on some weight around the middle and it looks yucky on me. I do have some food intolerance. I don't handle processed foods well at all. We think I have a sulfite sensitivity - so a lot of prepared foods are out (and a lot of high salt foods too). The funny thing is that I'm a huge foodie - so I make most of our food from scratch. My mother's side all has horrible heart disease so I have been preparing all our food thinking about having a low sodium/heart healthy diet. I've been sabotaging myself without realizing it, I don't even like salty food anymore! This high salt diet is really hard for me. I don't do well with dyes or HFCS (so Gatorade is out). I've been drinking the Crystal Light pure sport drink that has "all natural" ingredients. I also do horrible with too much pork or anything with too much fat in it. But I can do most foods in moderation, in fact I believe in moderation with almost religious devotion. I've learned not to eat too much at one sitting - that almost always results in me vomiting or having horrible stomach pains later.

Oh and I do get flushing from time to time... not often, but sometimes.

[Sarah4444]

Can I ask where you get that sports drink? I am so sick of gatorade. I guess it still has artificial sweeteners though?

[Bears Mommy]

I get the Crystal Light Pure from Super Target - but I think you can get it anywhere. It's pretty new though so I don't know.

I like it because it has Sugar, Truvia, and it's colored with purple carrot and hibiscus flower extract. It has 35mg of sodium, 3g of sugar, and 15mg of potassium. The grape flavor is pretty yummy.

Here is a link to the product page.

eta - it looks like some of them have different amounts of sodium in them - so you have to look at the labels.