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CarmelRob

Introduction And Some Questions

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Hi everyone, my name is Robert and I believe that I've been suffering from POTS for four years now under the impression that it was CFS. Two years ago I was put on a Tricyclic medication called Anafranil and everything has gone downhill from then on.

My most distressing symptoms at the moment are:

-seizure-like tremors especially in the morning(possibly due to hypovolemic shock?)

-excessive clear urination(tested negative for Diabetes Insipidus)

-dehydration despite normal sodium(Above all the scariest since I can't depend on the ER to hydrate me)

-gastro-intestinal impairment due to gastroparesis and dismotility of the intestines(living on baby food and weight gainer shakes)

-and ofcourse tachycardia can sometimes double upon standing

There are many other symtoms like sensitivity to noise, nervousness, insomnia, dry eyes, high blood pressure, brittle finger nails, total brain-fog, exercise intolerance, sensitivity to extreme temperatures, headaches, loss of appetite.

At the time that I thought I had Diabetes Insipidus(Excessive urination) I was given desmopressin(synthetic ADH) which I still take or else I could dehydrate to death. Under extreme circumstances I sometimes loss up to a pound of water an hour. I almost died in the hospital when I went through the 12 hour water deprivation test.

What's the best way for POTS patients to rehydrate themselves? I've tried all sorts of recipes like the WHO oral rehydration solution of 1 teaspoon of salt to 8 teaspoons of sugar per liter of water. I've tried just salt water alone. I've tried using orange juice. I've tried Gookinaid electrolyte drink, pedialyte, gatorade.

Does anybody's blood pressure rise upon standing along with the tachycardia?

I just ordered Ceralyte 90 which I hope will help. I got this one over the 70 since I need the salt. Any experiences with this product?

Ok, I'm going pass out if I type any more. Thanks a lot! Hope to hear from you!

-Robert

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Hi,

Welcome aboard.

When I am in a stable state I can stay hydrated with pedialyte otherwise I need a few liters of IVs at the ER.

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Robert,

Welcome :)

Have you thought about getting daily IV infusions via port? I normally don't suggest/ask about that, but it sounds like you've tried and exhausted many of your hydration options. There are a few members of this forum who get daily IV's and it's really helped them.

I stay pretty hydrated by drinking about 4-5 liters of gatorade a day (sometimes more) and eating TONS of salt on everything (I even salt my potato chips :) ).

I hope you get some answers! POTS isn't a diagnosis anyone wants, but there are medications that POTS patients take that many with a CFS diagnosis may not have access to. (Mestinon, midodrine and beta-blockers are three that come to mind.)

-Lauren

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Guest dionna

welcome to the forum. i am actually really tired myself but i atleast wantwd to let you know that you have come to a great place to find answers and support. i will write later. take care.

dionna :)

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Hi Robert:

All of the problems you mentioned could be due to low blood volume? Have you seen a nephrologist? Have you done a 24-hour urine test and a blood volume determination?

Taking in the fluid is only half the battle. You have to do something to make sure that it stays in your blood vessels. DDAVP will enable you to retain water, but it doesn't keep the sodium inside you. You haven't mentioned Florinef or licorice. You can get licorice teabags or licorice extract (make sure that it has glycyrrhizin in it, that's the active ingredient) from the health food store. Glycyrrhizin deactivates an enzyme in your kidneys, thus allowing your natural cortisol to act like a mineralocorticoid (salt-conserving hormone). Florinef is a synthetic hormone with mineralocorticoid effects. Even if you take Florinef and/or licorice, you will still need to take extra salt (and probably some extra potassium and magnesium).

The other thing to think about is that you may need supplements of the water-soluble vitamins. Talk to your pharmacist about that.

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Hi Robert, Welcome to the board :)

Staying hydrated is definitely a challenge for me as well. What works for me is to drink water continuously throughout the day with a small amount of gatorade (the powder) thrown in. I have a tough time tolerating all that sugar otherwise. I also eat a can of soup a day - when I stop doing this I have a difficult time getting enough sodium in my diet. Let's see, switching to sea salt was also helpful. And when I need come extra hydration I start the morning with Emergen-C.

I find the shakiness is always worse in the mornings for me. Probably cause we need more fluids when we wake up. I also need my beta blocker first thing before I get out of bed :)

My blood pressure also rises upon standing. Just another way our bodies try to compensate and keep us from fainting.

Pam

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Welcome to the community.

I lived with a CFS diagnosis for about 10 years before I was diagnosed with POTS, and as unpleasant as this condition is, it's really nice to finally have the right diagnosis. All else aside, reading this board has been tremendously reassuring.

My blood pressure also rises on standing or on mild exertion. Walking up a flight of stairs can raise my systolic 20 points.

I hope you find some things that help soon. This site is a great resource for finding doctors, treatments, and other info.

Spike

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Hi Robert,

Just wanted to welcome you. I hope you can find something that will prevent you from getting dehydrated.

Best of luck to you,

Amber

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Thank you all for your comments!

I just had two revelations yesterday and today! I found that when I start to experience orthostatic intolerance that by immediately chugging 8oz or 16oz of water it works better than drinking it slowly and that inbetween water drinking sessions it is important to take in the following electrolytes in what I believe to be order of importance: Salt, Potassium, Magnesium, Calcium. I recommended B-6 since it helps with Magnesium absorption also. Be aware that without Magnesium you cannot get Potassium so when you start to become sensitive to sounds and have trouble falling asleep which are signs of magnesium deficiency, it's time to eat Pumpkin and Sunflower seeds for Magnesium. I don't believe it's adequate enough to rely on blood tests for an accurate protrayal of our electrolyte levels. Since our blood volume changes in a blink of an eye so does our electrolyte chemistry.

I also just realized that I've been taking too much salt which has been the cause of my dry eyes, face, and headache just recently.

This monday I have an appointment with a cardiologist/electrophysiologist who I pray will prescribe me Florinef which I have been researching for months now.

A possible explanation for some POTS patients having increases in BP when standing is a phenonemon called "hypovolemic hypertension" which I believe is related to the renin-angiotensin-aldosterone system reacting to an low-volume emergency state. My regular doctor is too scared to prescribe me Florinef because of my high BP since he thinks it will raise it higher but I've explained that raising the blood volume actually lowers my BP.

I'm extremely sensitive to laxatives, magnesium supplements, and even the diarrhea that licorice gives me. Being dehydrated is the worst possible state I can be in.

I'm going to hold off on the Ceralyte 90 and look into something that has less salt in their product line.

Right now my strategy is this until I get Florinef:

When I start to feel "Potsy", immediately chug some water.

Inbetween chugs, try to eat food that contain salt, Potassium, Magnesium, Calcium.

Anybody else have good experiences with drinking water fast?

Talk to you later

-Rob

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Hi Rob and Welcome. Your dehydration is a major issue, so hope you get some help soon with that.

When I was first diagnosed with POTS (after thinking it was CFS for 2 years), my doctor said a tricyclic was the worst med to be on. I take salt tablets (6) daily. I find it is too hard to try and eat the amount of salt that I need. I just don't like all the foods with a high sodium content.

My blood pressure drops when standing and this is a real problem for me. There seem to be a lot of variables with this crazy illness.

I wonder if it is better to have CFS, eventually people recover from it. Does anyone recover from POTS? About 30% I believe. Hmmm, not great odds either way.

Anyway, this forum is great and I am always learning on it and everyone is very helpful.

Take it easy.

Suzanne :)

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My illness began four years ago with a flu-like illness after a very stressful four month long medication withdrawal syndrome from "Effexor" which I was taking for OCD. After many tests were performed by my regular doctor and then later by a CFS specialist, the virus Coxsackie B type 4 and 5 showed up as active in my system. The doctor said that if my illness lasted for more than 6 months then it was probably CFS. By then it had already been like 4 months. I accepted the fact that I had CFS and took a year off of college until my flu-like symptoms finally went away.

Even though the infection felt like it disappeared I still fit most of the diagnosic criteria for CFS. Eventually I progressed enough to return to college but unfortunately my OCD was becoming intolerable.(If it's not one thing it's another!) I was already maxed out on "Paxil" and the decision was made to augment with "Anafranil" which is an old tricyclic drug from the 70s. I distinctly remember developing tachycardia on this drug which was odd since I had been on this drug before without any problems. Suddenly I was stricken with excessive urination, dehydration, and near absent bowel and stomach motility. After having gone to the ER and being rejuvenated by a simple saline IV, I stopped the drug as soon as possible. However, things didn't stay stable for too long. Now, not on any Anafranil at all, my entire syndrome was coming back again. I then realized that by lowering the Paxil, things got better. The cycle was like this: Lowering the meds gave a short remission followed by a relapse which I would respond by lowering the meds once again. Eventually the time came when I ran out of meds to lower and that's when the real trouble started. Going to the ER was becoming common place now and I was becoming fearful of my life which I continue to be till now.

I was finally tested for Diabetes Insipidus for the excessive urination in which I underwent a 12-hour water deprivation test with hourly testing. The test was cut short prematurely by three hours because I had lost so much weight. Every hour that went by I would loss about a pound of water weight. My weight went from about 154 to 145. I really started to deteriorate. My skin was starting to shrink and turn dark orange with a smelly odor. The nurse was having trouble taking my blood which was almost black. I was becoming too weak to move and would fall in and out of consciousness along with hallucinations that I had never experienced before.(probably where the mirage in the desert comes from) What kept me going was the hope that I would finally have a accurate diagnosis and this torment would finally end and I could get on with my life. What I got was a diagnosis of "Polydipsia"(excessive drinking) and was placed with guards in my room to restrict my water intake despite the fact I had just lost 9 pounds of water weight and was monitored closely during the test so that I would not drink anything. I pleaded with the doctor to consider the fact that some people with CFS have a Diabetes Insipidus Syndrome but she refused to listen. The fact that I had a mental illness gave them the perfect excuse for why I would want to drink excessively. It was now a psych issue and no long a medical one. This was the lowest point in my life. My abdomen was in so much pain and was triggering my syndrome to urinate more water. Whatever I drank came right out of me. The only relief I got was from the ice chips they granted me that soothed the pain alittle. Fotunately, I didn't continue to dehydrate but slowly the water began to "stick" with me and I left the hospital.

The reason I was diagnosed with Polydipsia and not DI was because my sodium levels were very low when they should have been high(sound familar?) I was now out of the hospital worse than before and still on a near liquid diet because of my intestinal dismotility. My survival instincts kicked in and I started to do a lot of research and work on a theory of abnormal vascular vasodilation which can explain the psuedo-diabetes insipidus syndrome I had been suffering from. This theory also explains POTS. The theory is this:

Abnormal vasodilation of the aorta or possibly the entire body's blood vessels immediately produces two things. 1) Low blood pressure 2) Low blood volume in relation to the increased diameter of the vessel.

The body responds to this sudden drop in blood pressure by pulling water from the surrounding interstitial tissue into the vasculture which produces three things. 1) dehydration of the body 2) Normal blood pressure 3) Normal relative blood volume which is now more than it used to be 3) dilute blood(low electrolytes)

The dilute blood, particularly the low sodium levels is detected by the osmorecepters located in the hypothalamus. Under normal circumstances when sodium levels are high, there is increased output of Anti-Diuretic Hormone which increases urine concentration and conserves water. The thirst sensation is triggered as well.

When low sodium is detected, the body responds by lowering the output of ADH and reducing thirst since low sodium typically means the body is overhydrated. Lowered release of ADH leads to increased urination until sodium levels are back to normal.

Therefore, the body will not accept dilute high volume blood and will lower the blood volume until the sodium levels return to normal.

Low blood volume is sensed by the heart's baroreceptors which then stops sending signals to the vagus nerve, hypothalamus, and brainstem. The brainstem then stimulates sympatheic release of norepiphrine in the blood stream which increases heartbeat(POTS) and vasoconstriction in the lower extremities. So low blood volume causes tachycardia.

So the bottom line is this: Abnormal vasodilation(not necessarily in the lower extremities) causes dilute blood which causes excessive urination which causes low blood volume which causes tachycardia upon standing. Actually in most cases throughout the day, abnormal vasodilation by itself is probably the culprit alone in causing the low blood volume but just be aware that the 'psuedo diabetes insipidus syndrome' can occur in cases of very low sodium. Interestingly, when you start to feel better and the vasculature starts to return to normal(vasoconstrict), this can cause excessive urination as well.

I'm aware there are different theories of POTS along with different subtypes. Patients that have blood pooling, for instance, is thought to mean loss of innervation in the lower extremetries. My 'aortic vasodilation theory' doesn't really apply to them but more to patients whose symptoms can be triggered while lying supine and are only exacerbated standing up. There aren't too many explanations as to how this is possible which is why I came up with the theory.

How many of you are rarely ever thirsty but still feel dehydrated? How many of you seem to urinate the water you try so hard to keep in your body? Can anybody see their abdominal aorta pumping through their skin like I do especially in response to heat? Has anybody ever tried using icepacks on their abdomen? How about a waist band for compression?

The solution basically is to increase blood volume enough so that the autonomic dysfunction in the brain starts to correct itself. I don't have any magic solution. I do know that jogging works better than anything else only if you're well enough to perform it. Otherwise it can be your worst nightmare. If you're going to jog, do it at night. POTS patients do better at nighttime.

Yikes, I've typed too much. Getting dizzy. Talk to you later.

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Vanderbilt's Autonomic Research team did a study on drinking 8oz of water quickly and found that it raises BP. They actually recommend chugging water as part of the OI treatment protocol. Obviously, you don't want to be chugging water all the time, but if you need a little extra boost, I was told drinking 8-16 oz of water quickly 10-20 minutes before activity can raise BP.

Florinef is a good option to raise blood volume. If that doesn't help, you may want to reserach Procrit. It's been a miracle drug for some people on this board.

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A couple of things in your message caught my eye.

1. I also had a really bad withdrawal reaction from Effexor. Muscle spasms and anxiety, ended up in the ER and then the psych ward. It wasn't until I had been there for a day that I happened on a doctor who knew that going off Effexor could do that. @#%$*!!. And I also ran into many, many doctors who were not willing to look past my psychiatric diagnosis (depression) for a physical cause for my problems.

2. I've never looked at my stomach when it happens, but sometimes when I'm particularly tired I can feel the blood pounding in my aorta. I don't know how unusual that is?

Glad you're finding some things that help at least a little.

Spike

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Hopefully, your cardiologist is informed about dysautonomia and will request the appropriate testing (Tilt, specifically). Florinef can help with some of the dehydration issues and there are many other good suggestions given in the previous posts. Many of us do benefit from iv fluids- I receive them daily via a port. However, this is an extreme solution and I hope you and your doctor can find a less severe treatment option. Good luck to you.

Carmen

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Spike, I can't empathize with you enough about the Effexor withdrawal syndrome. My family doctor at the time thought that I was turning psychotic because of my already existing mental illness and wanted to send me to the psych ward. Instead we agreed that I would take Zeprexa an anti-psychotic which did nothing. It took me four months to realize that in order to get off of the Effexor I would have to go ALL the way back on my original dose and then start over ALL over again but this time taper off EXTREMELY slow counting the darn beads out. It took me an additional 4 months to finally get off of this rotten drug. By then the damage was done. I then caught the flu-like illness that would later become CFS/POTS. There is no doubt in my mind that Effexor is to blame for deconditioning me to develop CFS/POTS.

I seem to be having very good results with water chugging in conjunction with the Desmopressin in that it lowers my HR from like 100 to 73. My BP goes too high when I drink too much water with the Desmopressin which I have to watch out for. I now realize that chugging water in itself is probably not the best idea but rather should be done with an electrolyte drink like Pedialyte instead. I had a bad experience this morning with low Potassium.

I'm curious. If everybody seems to need excessive salt and water, then how come everybody isn't on Florinef? Do certain subtypes of POTS not need to increase their blood volume, like hyperadrenegic?

Hopefully, your cardiologist is informed about dysautonomia and will request the appropriate testing (Tilt, specifically). Florinef can help with some of the dehydration issues and there are many other good suggestions given in the previous posts. Many of us do benefit from iv fluids- I receive them daily via a port. However, this is an extreme solution and I hope you and your doctor can find a less severe treatment option. Good luck to you.

Carmen

I find that IVs help more than anything else in the ER room. However, I never seem to show up as dehydrated. It's only when I get lucky and they give me the IV before taking my blood that I enjoy the benefits of the IV.

If the rate of the saline infusion is too low however, I find that it doesn't work and that I just urinate out what goes in me. This concept can be carried over to the fact that chugging water is better than sipping over time.

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Some of us go from low or normal bp and terrible tachycardia to Orthostatic HyPERtension..the latter being a new thing for me. but when I am supine, my Bp lowers and sometimes greatly so and I need coffee in the AM to boost it but only two cups or it worsens tachy. So many dichotomies with this illness. :lol:

I NEVER did well on Florinef even before the spiking BP. We all share many symptoms but since POTS is a dx of SYMPTOMS we all have hidden, underlying causes that many of us will NEVER EVER Find.

I do benefit greatly from DDAVP as needed but did not have the huge water loss. My record years ago was 5 lbs in a day. .and that would make me weak.

I didn't read all of your post because it was long and I have horrible problems reading these days and am trying to stay off the laptop...but you appear to have lots of info about your illness which is good.

Good luck getting a doc to help you.

:angry:

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