Hi I posted on this board a while back and have thought about posting again for a while so here goes...

CH started at 17 in 1972 Suffered for 10 years with no diagnosis. After diagnosis tried every drug in the book with some creative combinations..this was before Imetrex was available. Nothing helped,
including having a huge oxygen tank in my house.

I continued to have clusters for the next 10 years, going to the same neuro. My neuro switched to Parkinsons treatment only so i found a new neuro. High doses of steroids would lessen the duration of the attack, but still no pain relief. Finally Imetrex came..did spray..helped some. finally started injections and it aborted them..happy days!!

In 1990 i was diagnosed with Lyme disease..became chronically ill with it along with bartonella. in my search for a cure i found an internet site were people were taking Sea Salt and Vitamin C.

I started it in 2004 and  have not had ANY clusters...I have not taken any for a day or two and the shadowing comes ...so i go right back on it.

I take 1 teaspoon of salt and a half a teaspoon of powdered C and mix in water . I sip a little bit at a time. A larger person should take more. Just start out slow.

If any one is interested in giving it a try, you can email me at mcpepper25@hotmail.com

Hope someone here decides to try it, so we know if it is just a fluke..Margie

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                     kinder gentler Potter

I must admit, I've never heard of sea salt used for clusters. Glad you've found something that gives you relief......

Bill

Hello Margie and welcome back.

You say you found the site where people were taking salt and vitamin C back in 1990 and you didn't start taking it yourself every day until 2004.  Why did it take 14 years for you to take it?  

Also, are you certain that you didn't become episodic and that your CH's are just in remission for now?

Thanks,
mel

I have to chime in- "sea salt" is a very general term, usually applied to salt that has not been processed (had all of the impurities cooked or chemically leeched out) and thus still has minerals and trace elements.

The question is, what kind of sea salt?  There's eleventy-billion types from around the world, all with varying degrees of "purity" and all containing VERY different minerals from each other; just check out a Whole Foods or other gourmet grocery store's "spice" section.

So, I honestly can't see how that's supposed to help, because there's NO WAY that everyone is going to end up taking the same salt- and anyway, plain old vitamins have WAY more minerals in them than a pinch of sea salt, and I drink Emergen-C everyday (has 2000% of the daily required Vitamin C intake plus vitamins) and it hasn't done squat for me.  Sorry....sounds about as helpful as meditation.  :-?

I'm supposed to raise my blood pressure, and Gary's never had problems with his and is taking verapamil again, so we've dramatically upped the amount of salt in our diet.  I haven't measured, but we likely use close to a teaspoon of salt a day.  Not "sea salt" per se, but unprocessed salts from around the world that would have lots of trace minerals/elements in them, and we take supplements that include heaps of vitamin C.  

I'm not sure that combining it in water and taking them at the same time would actually make a difference.

Perhaps the connection may be an amount of magnesium in the salt you're using and that happens to be what's helping?  (Unfortunately, we haven't seen the magnesium supplements help Gary's CH activity yet, but he's only been taking them religiously for about 5 months so far).  (Just an FYI, epsom salt is, in fact, magnesium sulfate.  Don't know about magnesium levels in sea salts though).

Whatever it is, glad you're finding relief.

My best,

Laurie

Margie,

The last time you were here you said you had been infected with Lyme Disease in 2000 and that you believed that the Lyme disease was at the core of what caused your cluster headaches.

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Do you still feel that Lyme Disease caused your clusterheadaches?

Scott

  Margie, I'm glad you have found something that works for you, but without scientific data to back up your dosage advice, I felt it would be best to find some scientific research to make sure everyone who reads your posts gets all the facts.

  In your post from 2006, you say:  "take one gram of Vitamin C and 1 gram of sea salt (1/4tsp) for each 15 pounds of body weight. So if you weigh 150 lbs. you take 10 grams of each  per day."

   Here is some data from FACTA UNIVERSITATIS: "The toxic oral dose of salt is 0.5-1 g/kg of body weight, whereas the fatal dose amounts to about 1-3 g/kg of body weight, depending on the age, gender, general health state, and other individual characteristics" Lidija Kostić-Banović, Institute for Forensic Medicine. [i]Medicine and Biology Vol.12, No 3, 2005, pp. 146 - 149.[/i]
    Also, "Ingestion of large amounts of salt in a short time (about 1 g per kg of body weight) can be fatal. Salt solutions have been used in ancient China as a method of suicide. Deaths have also resulted from attempted use of salt solutions as emetics, forced salt intake, and accidental confusion of salt with sugar in child food." Elisabeth Elena Türk. Fatal hypernatremia after using salt as an emetic—report of three autopsy cases. Legal Medicine 2005, 7, 47-50.

And according to the Journal of Internal Medecine,
    "It has been well documented that as little as two tablespoons of salt (30g) can rapidly elevate serum sodium concentration by as much as 30 mEq, depending on body weight. Such rapid elevation of sodium levels can result in serious neurological consequences." Y. OFRAN, Department of Medicine,Hadassah Hebrew University Medical Center, Jerusalem,[i]Journal of Internal Medicine 2004; 256: 525–528[/i]
 
   From the same article: "Seventeen cases of severe hypernatraemia secondary to oral administration of sodium are depicted in Table 1":

Table 1 Characteristics of cases of salt poisoning
Sex Age Amount ingested  Outcome
 F   20   <1000 g          Died
 F   21    300–600 g      Died
 F   48    20 g               Died
 F   35    60 g               Died
 F   54    Unknown        Died
 F   36    1000 g           Died
 F   23    Unknown        Died
 F   35    78 g              Died
 F   56    100 g            Died
 F   27   <1000 g         Died
 F   26    150 g            Died
 M   41    70 g             Died
 F   85    Unknown       Survived
 F   45    80 g              Died
 F   19    Unknown       Died

  Also, you made this completely un-backed up claim: "for all the parents whose kids have been diagnosed with CH....I would reallyresearch Lyme disease and yes there are parents giving their toddlers the salt/c..so it is very safe"  
   
    I am a mom, and it frightens me that this kind of hearsay is being disseminated on the internet for desperate parents grasping at straws.  Children's kidneys cannot process excess sodium as efficiently as adult kidneys, which puts them at much higher risk for serious medical problems, especially if they are being administered this remedy without a doctor's care.
 
    Again from FACTA UNIVERSITATIS:  "Due to excessive salt intake, hypernatremia is far more common in young babies and children. In autopsy findings of fatal sodium chloride poisoning cases, brain edema, venous and capillary congestion, cortical venous thromboses and venous brain infarcts are predominant. Demyelination, which covers a wide area of the thalamus, basal ganglia, external capsulesand cerebral vermis, has been described in literature in cases of three deceased children, whose hypernatremia was aggressively treated." (ibid.)
   These children all died within three hours-two days of being taken to the emergency room.  There's even a few cases of child death by sodium poisoning in the news right now- just google it and you'll find several.  Maybe I'm overreacting, but I think it's one thing to talk about a treatment that's working for you, and another thing entirely to give out dosages and say it's safe for children without any proof.