Daughter diagnosed with POTs: Questions regarding meds

[soulfeast]

Sorry, yep that was a typo. 3000mg or 3 grams of salt.

I'm sorry that I can't answer your question (don't know anything about ACE deletion) but I thought I'd ask whether this is a typo. Did you mean 3000 mg a day (3000 mg = 3 grams) instead of 3000 grams a day?

I have heard of people taking even more salt than that, sometimes 5-6 grams (which is quite a lot), but never 3000 grams. At about 2400 mg sodium per teaspoon of salt then that would be about 1,250 teaspoons of table salt each day (please check my math, I could have messed up somewhere).

 

[soulfeast]

Thanks X,

I m happy with the integrated MD we have right now.The one I had before looked right past a CT scan that showed obvious complete sinus deterioration and didnt know to refer me to a specialist. He was also not mold literate but I am grateful for what he did bring to the table at the time. I wanted the dysautonomia diagnosis for my daughter because it helps sometimes to have a label to put on symptoms then on the flip side, the label and all that goes with it can be detrimental. So I do understand where you are coming from. The label saved my sister, I really do believe that, becasue she used it in a way to calm her system down. She would talk her body down and tell it, its the dysautonomia, its ok...

Now, though, that her daughters are manifesting the same kind of illness, I think the label is holding her back because she cant use her "brain retaining" on or for her daughter and its keeping her from looking outside the box. I am trying to get her to see my integrated MD!

We do need to figure out the diet angle here. I am adding in more healthy fats, out with the polys and that process is difficult as was the no gluten and dairy then at least low sugar. My sister's daughter is still eating gluten, lots of sugar, caffeine.. its not pretty and her gut has completely immobilized. She has been on 15 medications for her gut and dysautonomia, so I do get what you are saying...

We are holding with the beta blocker, working on diet, metals, candida, etc and I am looking into ways to raise seratonin like with SAD lights and so on. I still need to understand the role of the ssri .. or the seratonin. The ANS MD only said SSRI helps raise BP. The ANS has been upregulating sympathetic responses enough to set her on edge emotionally. I see the vaso dilation and lowish BP.. want to figure this out.

I do know you care! Im glad the diet worked for you. That is good to know. It feels like an uphill battle with the candida that will not go away and difficult to cotnrol the diet of a teenager who is constantly bombarded with friends eating so badly.

I still have not run this past our integrated MD to get her take on this.

Hi again. After re-reading what I wrote, i can see that I probably sounded harsh. My apologies if I came
accross that way. I'm glad you understood that I said it because I care. Apparently too much sometimes ..

Fwiw, I'm using a tablet most of the time now and my cfs brain is focusing too much on one finger typing .. Lol

I have a dd who grew up with health problems including a high ana and anaphylaxis so I understand. Fwiw, she's an adult now and on a vegan gf diet and feeling the best she has her whole life. She's also juicing. Of course she still carries an epi pen just in case so I get that her health's not 100%.


That's part of the reason I feel so strongly about kid's health. We wasted her whole childhood because we trusted her traditional doctors when they told us drugs were the answer. And I was a hyper / zombie mom for 15 /2 years after getting me/cfs because I trusted my specialist. No one told us how important diet was. And now we both wish we could get those years back.

But, while I do have strong beliefs about using diet, supplements, etc to help our bodies heal, I realize that this doesn't always happen. No matter how much we want it too.

I'm glad you saw an integrative doctor but sorry to hear you're not happy with the results. I guess I'm lucky to have an integrative doctor that I feel I can trust. It helps that my traditional doctors
have all referred me back to her and really seem to think she's sharp. I do too. Fwiw, I would have to say they trust each other because she refers me to them for what they know too.

Not that she's cured me but I feel like I have a much better understanding of why. But most of my me/cfs symotoms are under control via diet. Kow. I'm a celiac who also has neuro problems from gluten who
isn't smart enough to avoid gluten so I keep making myself sick. I just ate out at whole foods on wed and I knew not to trust the food on their buffet to be gf but I caved and ate it anyways. According to my stool tests, I overproduce gluten antibodies. In my defense, I'm hungry all the time.

As far as picking a diet goes, Imho, i was fortunate enough to be directed to the paleo and low oxalate diets back in 2007-8. I don't know which one helped but my candida is gone finally. I've read that the low oxalate diet would help this tho if you want to try it. There's a yahoo group for this.

I hope you get this worked out whatever you do. Tc .. X

Ps. Hugs from one mom to another.

 

[soulfeast]

Thank you, nanonug and sushi!

 

[Carrigon]

soulfeast, doesn't matter how much salt you have if you're having the wrong salt. You need real salt that has all the minerals in it, not the white stripped junk they call salt in the regular grocery stores. That garbage is what is causing POTS/NMH to begin with. Real salt is a balancer, it regulates blood pressure. You need some Celtic Grey salt from the healthfood store. Just a quarter teaspoon per day and you will see a difference.

 

[kurt]

Here are some thoughts. I have CFS, and an adult daughter with CFS. Also have a teenage daughter who sounds a lot like Soulfeast's daughter, and we have been able to stop the condition from worsening, but not reverse the situation. And we also get no real help from MDs. I realize no two cases are alike so only present this as one example, maybe some ideas here.

We have learned that the major issue with teen daughter's chronic fatigue and low BP is most likely in the adrenal cortex. Don't know exactly what is wrong, her labs and blood counts are mostly normal except Vit D is usually off, but supplementing D does not help, regardless of form. Two things that have kept her able to attend regular schools (she is about to graduate HS) the past year are adrenal support every morning ('Adrenal Stress End') and our own homemade rehydration formula. We have not found any commercial rehydration formula that works for the typical CFS case with ACE deletion, but our formula works, it includes natural vasodilators (cinnamon and bioflavonoids) as well as sea salt and brown rice broth boiled together. This is important, if you cook the rehydration drink like this there will be double the sodium able to pass into the blood. This is due to the ability of glucose molecules (fructose in this case) to bind two sodium ions from the salt when cooked long enough. I have written a paper with this recipe and will gladly email it to anyone interested, as long as it is not posted online, along with a link to the B12 protocol we are using. Just message me if interested. This works, we sleep better and have far less PEM, and it helps all three of us and others we have shared with. But cooking the rehydration drink is a little work, some CFS patients would need help with that.

Also very helpful is goji berry juice, or just the berries. They appear to support the mitochondria in a study and that seems correct, also great antioxidants. And we are all three on a multi-B12 protocol adapted from Rich's & Fred's protocols. All of these steps together have made a difference for my teen daughter, keep her going and so far she is not falling into complete CFS like our older daughter did at the same age. For the record, I have four other children and none of them has CFS, two are grown. This is a crazy illness when it hits a large family like this. We see the patterns but the doctors won't believe what we say so just have to try to make things work...

 

[adreno]

That seems like a lot but if it's working for you then that's great!

Just curious, but do you take 5000 mg of the potassium citrate powder? Or did you calculate the amount of powder that would equal 5000 mg of potassium? Since the powder is a combination of potassium and other elements (C6H5K3O7) then the amount of potassium in 5000 mg of powder is less than 5000 mg.

For example, according to one web site about 275 mg of this powder is about 99 mg of potassium (the rest is the other ingredients). Doing the calculation (again, hope my math is correct!) then it takes 13,750 mg of the powder to equal about 5000 mg of potassium.

I guess the point is that all these different units can be confusing, at least to me.

Yes, I take about 14 grams of potassium citrate, providing 5 grams of elemental potassium. I hope it's finally clear to you.

 

[taniaaust1]

Sounds like your daughter is very lucky to have you as a mother

I cant give any recommendations as far as the drugs go but I'd like to say that my specialist who is treating my POTS always tries out all the non pharma POTS treatments before trialing meds for it. He says meds often have a low success rate for POTS and it can be hard to find one which helps.

eg Im wondering if your daughter has been fitted for medical support stockings for the POTS (thou I wonder if one can get them in childrens sizes). Im finding these helpful thou certainly not a cure for it. The pressure of them needs to be at least 30.

I also find I need to drink quite a lot before I get some good effects from being very well hydrated (in my case I need to drink about 8 glasses of fluids before going out anywhere if I have any hope of avoiding a collapse and then continue drinking at the rate of about one cup per half an hour... as you are aware thou, too much plain water is dangerous.

Unfortunately after so much drinking sports drinks for 6mths, the enamel was being worn from my teeth and as Im now prediabetic I cant drink those no more.

In my case I havent found salt loading helpful.

best luck with your daughter and in finding the best treatments for her.

 

[soulfeast]

Thanks, Carrigon. We use the brand Real Salt.

@soulfeast, doesn't matter how much salt you have if you're having the wrong salt. You need real salt that has all the minerals in it, not the white stripped junk they call salt in the regular grocery stores. That garbage is what is causing POTS/NMH to begin with. Real salt is a balancer, it regulates blood pressure. You need some Celtic Grey salt from the healthfood store. Just a quarter teaspoon per day and you will see a difference.

 

[soulfeast]

Thank you for saying that, taniaaust1. When my sister was very disabled with dysautonomia, none of us knew what to do or what to make of it or her. It was a helpless feeling and we did judge.. we tried not to but we were so perplexed. So when you realize it esp when it happens to you personally, you know better. It didn't effect me too much (low manifestation for me) until I became infected with lyme and lived in a mold contaminated house. Then my dysautonomia went nuts, esp when I try to detox.

My daughter started manifesting symptoms much younger than me. I am realilzing there is no onse size fits all solution and thats frustrating.

The support hose help me. I can feel when my legs are "off". Fluid feels trapped in my legs and the support hose feel great when that is going on. I might try to find a pair for her but I dont know if she will wear them. She gets dizzy and grays out and has tachy but she doesnt seem effected by it like me. If my pulse rate was in 90s-120, I would be climbing the walls.

Sounds like your daughter is very lucky to have you as a mother

I cant give any recommendations as far as the drugs go but I'd like to say that my specialist who is treating my POTS always tries out all the non pharma POTS treatments before trialing meds for it. He says meds often have a low success rate for POTS and it can be hard to find one which helps.

eg Im wondering if your daughter has been fitted for medical support stockings for the POTS (thou I wonder if one can get them in childrens sizes). Im finding these helpful thou certainly not a cure for it. The pressure of them needs to be at least 30.

I also find I need to drink quite a lot before I get some good effects from being very well hydrated (in my case I need to drink about 8 glasses of fluids before going out anywhere if I have any hope of avoiding a collapse and then continue drinking at the rate of about one cup per half an hour... as you are aware thou, too much plain water is dangerous.

Unfortunately after so much drinking sports drinks for 6mths, the enamel was being worn from my teeth and as Im now prediabetic I cant drink those no more.

In my case I havent found salt loading helpful.

best luck with your daughter and in finding the best treatments for her.

 

[Sparrow]

I am MAO++ and have some COMT issues as well. I tried many different kinds of antidepressants, and they were all AWFUL for me. I think you're right to approach them with caution. And if you do decide to give it a try, I would suggest going VERY low and slow until you know how she responds.

Depending on the drug, they either had really extreme side effects, or made me dramatically depressed (tanked my serotonin rather than raising it). And getting off them was a whole other battle. I may be an unusual case, but I thought I would share in case it helped. Good luck!

 

[Carrigon]

Thanks, Carrigon. We use the brand Real Salt.

Doesn't work like the celtic grey does. I've used both and the only real help I got was from the celtic grey.

 

[ramakentesh]

I found no benefit from increases salt in my diet until I started on licorice and then Florinef.

 

[taniaaust1]

On thing I didnt mention in my other post but which I think it is important as far as dealing with POTS goes, is to become aware of all the triggers which make it worst be in certain foods/drinks, big meals, certain time of ones menstration cycle or combination of various things.

I myself find that things which usually wont affect me.. will affect me if in certain combinations. eg if i have eat before going shopping.. I last far less longer and are more likely to collapse.

or I can manage a big meal out but if the restaurant is also warm at a temp thou still which I usually would be okay in.. the two things together will cause me a collapse.

Another trigger for me is raising my hands above my head or even both arms to my shoulder height eg if i lean on a counter at a shop that high, will more likely make me collapse or make my POTS worst.

I found no benefit from increases salt in my diet until I started on licorice and then Florinef.

Ive just started taking Florinef at a quarter of a pill (Im to slowly work up to 1 pill over 2 weeks) but already are finding it quite helpful. That and the stockings have enabled me to increase my time per day on feet from 1-1.5 hrs to 2.5 hrs.. still broken up time thou (but its basically DOUBLED what i could previous do on feet without bad effects.

Florinef is the first choice drug for POTS of my specialist who is one of only two drs diagnosing and treating POTS in my state.

 

[ramakentesh]

It works for me like that as well. I find that it tends to make me feel anxious at first and when i up the dose. I made the mistake of taking it ebfore work and i felt really stressed out.