New and looking for diagnosis/treatment

[RecipeForDisaster]

I am new here, but think I have had these issues for quite a few years. They sort of just seemed like "me" and I have been realizing more and more that "me" is not normal or healthy. 

I love to hike, horseback ride, and kayak but I have zero stamina or exercise tolerance.  If I'm even stirring pancake batter and I don't take lots of rests, I start to "dim out" and will get a little nauseous and faint feeling. I'm not very orthostatic for the most part, sometimes 8-10mmHg difference from sitting to standing, sometimes no difference. The dimming also happens I feel I get up to answer the phone or something.

I can't tolerate heat or cold and am always swinging from one to the other. It feels sort of like fever and chills but my baseline temp is really low, usually 96 degrees. I nearly never sweat except when I'm going to pass out. I don't when its hot out and I never get thirsty. My hands, feet, and nose are always cold and my knees and ankles often have purplish gray discoloration. I have very puffy eyes in the morning lately. I'm also beginning to experience migraines for the first time. 

I just had an endocrinology workup including ACTH stim and the only thing up was high renin ( a sign of low blood pressure). I've had tons of bloodwork. My blood pressure was always high (on 3 meds for hypertension 20 years ago, 148/88) and is now 90-100/60 most of the time. Nothing in my life changed since I was hypertensive. I haven't been able to check it at any of the worst times but the lowest I've recorded is 82/56 (still quite bad compared to my previous normal!) . That does go up into the 120s after driving in traffic and stuff, so my body -can- bring it up. I've had several instances of near fainting and blacking out, cold and gray, sweating and nauseous on the floor including on sidewalks and at work. I need for that to stop! It's sort of random and doesn't have a connection to anything that I can think of. When I feel rotten, food and water don't help. I tried drinking 4L of water a day for a few weeks. No difference. I already love salt and eat lots of it, but I did a trial of very high salt and that didn't seem to help. No way is my normal diet low in salt!

My heart always throbs in my neck, chest, ears, etc. I can see it through my shirt and it makes my laptop screen wobble in time to my heart rate. My rate isn't terrible but often 80-110 at rest (previously in the 60s-I'm still fairly fit) . It's the palpitations that bother me. I have one cup of half caffeinated coffee a day and I have tried cutting it out with no benefit. Often, my symptoms are worse after eating. I think they are less severe if I stop eating well before I am full. 

Previously, I had very very low B12 (120!) and wonder if that caused nerve damage. I also had low vitamin d (11) and ferritin (6, I think). Those levels have all been restored. 

I have a CPAP for sleep apnea and have trouble falling asleep with the palpitations. They wake me up and it takes hours to fall asleep again. I sleep lightly anyway even with blackout shades and a white noise machine. I am wide awake early in the morning and bothered enough by the throbbing heart that I have to get up. However, I'm relaxed and calm and ready to sleep when I go to bed. Breathing very slowly and deeply doesn't improve the throbbing. I do take magnesium and sometimes melatonin or tryptophan to help my sleep, but I don't have great results. The throbbing wasn't constant until a few weeks ago... when it's not present, I have little trouble falling asleep. Lately, I've had several nights where I slept either zero or two hours because of it. 

I have an appointment with a cardiologist in a couple of weeks and am considering calling Dr. Christopher Gibbons to get on a waiting list. 

I have a great life and little stress... I have an abundance of faith, a good job, a wonderful husband who is a nurse, and a comfortable home. I am not even anxious about all of this. I doubt it's something serious, I just want to enjoy being active again, and sleep well. It's come on so gradually that it almost seems like normal life, but then I ask myself why I don't want to hike, for instance... it's because I feel lousy soon after starting and just want to lie down. That's not me at all. I've been pushing through all of this for a long time, trying to maintain my life the way it was. I feel faint almost all of the time and would love to get rid of that, too. 

Today, I tried a crude test for POTS and came up negative. I laid down for 10 minutes and then stood up. I was already having particularly bad palpitations lynig there and my heart rate only went up 15 bpm after standing for a bit. I don't feel a whole lot better lying down except for that faintness feeling-that does improvement but the pounding heart does not. I do often feel like I -want- to lie down, though.  

[MomtoGiuliana]

Welcome to the forum. 

DINET maintains a list of specialists which may be helpful to you:

http://www.dinet.org/index.php/physician-list

Even those of us diagnosed with POTS do not always meet the criteria for POTS (30 bpm increase on standing) at all times of the day.  You may want to record your orthostatic data at different times of day as that data may be helpful to a specialist.  There is also the tilt table test which would investigate orthostatic changes.

It's also possible you have another type of autonomic dysfunction.

Some of the symptoms you describe many of us on the forum have also experienced and are typical of autonomic dysfunction.

Best wishes in getting a diagnosis and finding treatment that helps.  Hope you will be feeling better soon.

[RecipeForDisaster]

Thank you! There are no specialists in my state and not many in the adjoining states. 

 

Do I sound like someone with some sort of autonomic dysfunction? I sure think so. It's good to know that not meeting the pulse increase at all times does no good rule me out. Sometimes I have a drop in blood pressure when standing and sometimes not.

[yogini]

It is very hard to know, because there are many other conditions that have similar symptoms to dysautonomia.  If you had a consistent increase in HR over 30 ppm or drop in BP standing that would point strongly to dysautonomia.

Since you're having palpitations, it will be interesting to see what comes up in the appointment with your cardiologist.  There other conditions like mitral valve prolapse which the doctor may also investigate.

If you are having palpitations you might want to ask your doctor whether it makes sense to take magnesium, as I think it can affect heart rhythm.

Edited November 29, 2016 by yogini

[statesof]

Hi Recipe, glad to have you here, as was mentioned POTS symptoms can manifest regardless of heart rate or blood pressure. Seeing a specialist and giving them your full history may give them the best idea of things to rule out, as well as if you qualify for POTS or dysautonomia.

[RecipeForDisaster]

Thanks. I do take magnesium as well as vitamin D, B12, folate...

 

Previously, I had very minor leaking of three heart valves, but it wasn't supposed to affect anything. 

 

My baseline blood pressure is now about 60-70 percent of my previous baseline. That's what I don't understand. But keeping in mind my fast heart rate and temperature regulation issues, I think this makes sense. I just can't seem to get care from a specialist and I don't think any of my doctors are well versed. To them, the idiopathic label and no treatment seems good enough.