Worsening POTS, headaches and sodium confusion

[Sarasw]

I have hyper POTS symptoms and CFS and just found out I have mild hyperaldosteronism which I am getting further tests for. My symptoms usually include nausea but have I become more thirsty (not diabetic), not nauseous anymore, drinking more water and getting vice-like headaches and weakness. I was told by doc not to increase salt but I think he doesn't understand POTS. I wonder if I have low sodium but my blood test said it was 141 so not low at time of test. I drank 15 cups of water one day and got headaches the next. Today more headaches but drank less water (lost count). And hot flashes and adrenaline surges. I don't know why I am getting headaches but keep thinking of low sodium. I started adding salt to water but it hasn't helped much yet. 

[Shepard1]

@Sarasw  If you have primary aldosteronism then your thirst symptoms may reflect that you are hypokalemic ( low potassium levels) - from what I understand - which means you would need to seek medical assistance and review urgently.  Hypokalemia can cause cardiac arrhythmia and serious threat to life.

Other Symptoms ....

• Weakness
• Cardiac arrhythmia's
• Muscle cramps
• Excess thirst or urination

Hope you are okay.

 

[Sarasw]

Thank you @Shepard1. My blood test for potassium was normal but I will ask the doctor about it. I have no palpitations or muscle cramps and recent ECG fine and I do eat lots of vegetables. My head is mostly better. Thank you for your concern, I will check tomorrow with the doctor. They don't seem to have a clue about how much to drink, etc.

I asked for the aldosterone and renin tests, no doctor thought to send me for that test. Good thing I asked I guess! I don't have high blood pressure though which is good.

[yogini]

Most doctors wouldn't know how much fluid and sodium to intake.  Even the doctors that do recommend give a range and we have to experiment.  A lot of it is just trial and error - if you do it gradually you can see what helps.  Remember to count all fluids (not just water) in measuring your fluid intake. 15 cups - if you increased suddenly, might have an impact on sodium and potassium.  

[Sarasw]

Thank you @yogini . Do you think we adapt if we increase water consumption slowly over several days? I am limitimg it to 12 cups a day for now. I'm not sure if sodium consumption depletes potassium but I will try having only a little extra sodium and plenty of fruit and vegetables. I don't know if the headaches are from POTS, adrenaline or sodium or potassium depletion.

[Pistol]

I used to drink a lot of fluids and crave salty foods ( pickles, crackers, marinated things etc ) I still needed infusions of Saline often. I noticed increased urination in those years. Now I get weekly infusions of Lactated Ringer solution ( electrolyte rich ) - which is specially formulated to keep the fluid within the blood vessels - and no longer have the frequent urination. My symptoms have greatly improved. I am not saying this to recommend you get IV fluids but to share that just salt and water may not be enough. Gatorade or other electrolyte-rich drinks may be of more value? Prior to the infusions I did benefit from sports drinks during flares. 

[Sarasw]

Thank you @Pistol. I will ask the cardiologist when I eventually get an appointment. My sodium was high normal yesterday but I feel that I need a little extra salt and extra potassium from food. I do wonder how many electrolytes that I am losing drinking 12 cups of water a day.

Glad your symptoms have improved. ☺️

[bombsh3ll]

On 6/3/2019 at 5:21 AM, Sarasw said:

I have hyper POTS symptoms and CFS and just found out I have mild hyperaldosteronism which I am getting further tests for.

Is that definitely hyPER and not hyPO aldosteronism?

POTS patients typically have low aldosterone which leads to low blood volume and hence the frequent prescription of fludrocortisone. 

It would be very unusual for someone with high aldosterone to have orthostatic intolerance as this is the opposite scenario. 

BP also tends to be high if aldosterone is excessive.

Have you seen an endocrinologist?

B xxx

[Sarasw]

@bombsh3ll thank you for your reply. Yes, I think you are right. My aldosterone is about 395, my renin is 2.6 or 2.7 I think and my aldosterone/renin ratio is 146 so my aldosterone is not high but my renin is low. The lab test said primary aldosteronism is likely. I don't have high blood pressure and my kidney tests were all fine thank goodness. I had an ultrasound today. Fingers crossed no tumour. I wonder if POTS or high adrenaline can cause low renin?

I haven't seen an endocrinologist yet. The electrolytes are still confusing but I am having more potassium foods. I feel like knowing about the aldosteronism thing has caused a nocebo effect with worse POTS symptoms!

[Pistol]

@Sarasw https://ww2.mc.vanderbilt.edu/adc/38912

This is an article from Vanderbilt regarding your issues. Wishing you the best!!!!

[yogini]

On 6/3/2019 at 2:17 PM, Sarasw said:

Thank you @yogini . Do you think we adapt if we increase water consumption slowly over several days? I am limitimg it to 12 cups a day for now. I'm not sure if sodium consumption depletes potassium but I will try having only a little extra sodium and plenty of fruit and vegetables. I don't know if the headaches are from POTS, adrenaline or sodium or potassium depletion.

I think you'd be better able to figure out the right fluid level for yourself if you go slowly.

[Sarasw]

On 6/8/2019 at 7:33 AM, yogini said:

I think you'd be better able to figure out the right fluid level for yourself if you go slowly.

Thank you Yogini. Doctors aren't much help anyway, they said stick to eight cups a day! It's the hot weather that is throwing me off.

[Sarasw]

On 6/8/2019 at 3:29 AM, Pistol said:

@Sarasw https://ww2.mc.vanderbilt.edu/adc/38912

This is an article from Vanderbilt regarding your issues. Wishing you the best!!!!

Thank you @Pistol! I will show this to the internist. I think part of this may be from CFS too.

[“It’s not POTS!” Mom]

On 6/4/2019 at 5:01 AM, Pistol said:

I used to drink a lot of fluids and crave salty foods ( pickles, crackers, marinated things etc ) I still needed infusions of Saline often. I noticed increased urination in those years. Now I get weekly infusions of Lactated Ringer solution ( electrolyte rich ) - which is specially formulated to keep the fluid within the blood vessels - and no longer have the frequent urination. My symptoms have greatly improved. I am not saying this to recommend you get IV fluids but to share that just salt and water may not be enough. Gatorade or other electrolyte-rich drinks may be of more value? Prior to the infusions I did benefit from sports drinks during flares. 

Hi!

Your infusions if LR caught my attn and I want to share the quick version of my story.....

I am a mom of four who since I was a teenager had symptoms of PCS but thought it was normal. 3 years after my fourth c-section and not pregnant I began having more of the textbook PCS symptoms. They did an ultrasound and did not tell me that they saw varicose veins around my uterus. Fast forward two years and I’m a complete medical mystery that the only label they can give is POTS. I am medical and so is my husband. I saw every specialty that was available. My BP went up when I needed fluids. If my Potassium was even 3.4, I would have severe bradycardia until they corrected the level. I would be tachy when standing, but never stayed that way. My body had reached a point of blood pooling in my pelvis that I could not function. Lying down, I felt amazing. My heart was so stressed that I would present with episodes of bradycardia 20’s to 40’s. Almost constantly had chest pain unless I had just received fluids. The low potassium was from cystitis due to the amount of pelvic varicose veins that caused everything I  drank to immediately be peed out. I was told to eat lots of salt, and drink lots of water. It did nothing. I was incapacitated with four young kids. 4-11 y/o for 9 mo. They recommended cardiac rehab for POTS. I didn’t meet the typical POTS criteria but began anyways. I could never stay strong long enough due to the lack of blood flow to my heart and brain. I would have to think about the ages of my children, couldn’t remember how old I was, would have to pull over at times on the highway when I was lightheaded while driving, would squat when out in public to keep from passing out.  It was a true nightmare to not know why. I discovered at one of my hospitalizations that 2 liters of LR made me feel normal again. First, my lower abdomen would become bloated, then I would feel it hit my brain, it would actually tingle, and I could think clearly, speak quickly, feel witty, and normal again. Teasing my family and laughing again. Somehow, IV Lactated Ringers stayed intravascularly for about 2 days. It would be a slippery slope downhill after that. So, I became a regular at the local ER for fluids, at times not knowing my heart rate was in the 30’s. I was told I was crazy, asked why I had so many needle sticks (as if I was a drug abuser), told to get a massage and acupuncture and so much more. I applied to be seen at Stanford and The Mayo Clinic and was turned down. Finally, I read an article of a male who had the same symptoms as I did and he had pelvic varicose veins as well as May-Thurner Syndrome. I immediately called my ob and asked him to look at the ultrasound done 2 years prior and he told me there were visible varicose veins. These should not be visible unless you are having an internal ultrasound with the Valsalva maneuver. They collapse when you are supine. This led to the correct diagnosis. I did have May-Thurner but my iliac vein was not completely occluded yet. At the time of my first venogram, the camera (IVUS), showed that it was 1mm. A 14 mm stent was placed. They also coiled and embolized both backflowing Ovarian veins. The last part was sclerosing nests of pelvic varicose veins. I had relief for 2 months. Then the symptoms returned due to altered blood flow pathways forming a loop directing blood flow back to the pelvic varicose veins and pooling instead of up to my heart and brain. We found the guru of this problem and she did another venogram and shut down that pathway as well as many more pelvic floor varicose veins. They can only use so much sclerosant in one go. I am three weeks out from that and doing well. Not needing IVFs. I still need at least one, likely two more venograms to sclerose the many pelvic varices still remaining. There are so many that blood still pools. I don’t require IV fluids, but can function at about 75% now. I get tired....  This was an extremely disconcerting experience until we found answers. I never had the chronic pelvic pain that most women have. I had pain, but chalked it up to a couple of hernias I need to have repaired. I am a small person who carried 4 babies and that is how the doctor said this happens. I am also very veiny and have many valves. My baseline prior to this was akin to the energizer bunny. Always working on something, conquering the next thing, chasing kids, etc. I look forward to being at baseline again. I need to tell my story because so many women suffer from this and are told they are depressed. I am the opposite of depressed! By the end of the first 9 months I was situationally depressed, but give me some LR and I was back to baseline! No one could figure it out. I was asked if I was bipolar? No. I have ADHD, but love having the ability to hyperfocus. It also helps me understand my kids who have it too. I hope this helps someone. Don’t settle for POTS as a diagnosis. It is a cluster of symptoms for which there is a cause. Few doctors understand the causes. MALS, PCS, EDS, Nutcracker syndrome, etc. There are many reasons and finding the reason is a big undertaking. In my opinion, PCS is overlooked. I remember near the beginning asking my regular cardiologist if pelvic congestion syndrome could cause my weird symptoms and she laughed and said that we all have those issues as we get older. I’m 41, 105 lbs, and was active and healthy prior to this. Not your typical patient with three different cardiologists because they couldn’t figure it out. 

Don’t stop asking questions, be cautious with the exercise if you are hypovolemic. I ended up losing hair and developing stress vitiligo from that. One needs adequate blood volume to exercise. I hope they have all the answers and the next venogram or two will finish off these life sucking pelvic varices. I’m ready to be able to hike some mountains with my four kids! 

As a side note, I do not have leg varicose veins, am homozygous for MTHFR, and have a history of superficial blood clots so was unable to ever try birth control or hormones as a treatment. 

Let me know how your journey goes........it has definitely been quite the road for me and my family. It’s a good thing I am doggedly stubborn and determined. I hope for answers and the best for all who are suffering. 

Sincerely,

Misdiagnosed, mischaracterized, and once again mischievous “It’s not POTS!” Mom. 

 

 

[Pistol]

Hello @"It's not POTS!" Mom - thank you for sharing your story ! I am sorry you had to go through all of that, but I am glad that you have found relief. I do not have the same issues as you ( I have hyperadrenergic POTS and need IV fluids for different reasons ) but I am sure that your story will help some people who may share similar symptoms.  I do however share your experience with ignorant doctors. I had to do my own research and got diagnosed within 2 years of onset of symptoms because I read, brought articles to my PCP ( who by the way was my life-saver b/c he always listened and referred me to whoever I needed to see ) and eventually , after firing 5 cardiologists, was diagnosed by an autonomic specialist who confirmed my diagnosis with labs. Since then it has been an uphill-battle but I finally found the right treatment for me ( I am medication refractory ). 

Unfortunately our stories of having to fight the medical community to be taken seriously is common amongst dysautonomia patients and for me was one of the most worrysome facts of having a chronic condition. Many of us have to advocate for ourselves and often doctors do not want to hear that we are more aware of our issues than they. As @Sarasw, the OP, mentioned in her original post:

On ‎6‎/‎3‎/‎2019 at 12:21 AM, Sarasw said:

I was told by doc not to increase salt but I think he doesn't understand POTS.

Doctors often do not understand dysautonomia and - worse yet - I have encountered numerous physicians who did not WANT to know about it, even deny that it even is a real diagnosis or condition. Therefore what we are doing in the way of sharing our stories, finding answers and doing our own research is an important way to find answers. Be well - and stay on top of your health!!!!!!

[bombsh3ll]

On 6/14/2019 at 5:37 AM, “It’s not POTS!” Mom said:

These should not be visible unless you are having an internal ultrasound with the Valsalva maneuver.

Thank you for posting this, it has given me another angle to look into.

My whole illness started with a forceful valsalva. I have often wondered if it caused excessive venous back pressure damaging valves. 

I also have no varicose veins, am small build & have had 3 term pregnancies and also gross ascites which was essentially like a fourth term pregnancy in terms of abdominal girth & pressure. 

My dad has a lot of varicose veins in his legs though. Maybe I have them in my pelvis!

Standard POTS treatments have done nothing for me either. Licorice root (a volume expander) really helped me for a temporary period until it wore off. 

I did previously think about investigating pelvic veins after reading about another case who dramatically improved after these were treated, but it is expensive & the specialist at UCLH was dismissive when I brought it up, saying patients of hers have had this treatment & not improved. 

Your story has convinced me that it is worth a look. 

B xxx