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Anne,

I forgot to tell you. Some other causes I've found since surgery are

1. not enough water

2. not enough sleep.

3. going too long without eating (blood sugar)

Hope this helps.

Ellen

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  • 4 months later...
Guest guest

Is she on growth hormone? If she has such bad headaches that even medication

and a quiet rest won't lessen, you should have her seen by a doctor. But if

it's occasional complaints, could it be stress (school getting difficult at

the end of the year? any changes at home that she is having a time dealing

with?) Or have you had her eyes tested? Kids that age often have issues

seeing far away (eg. the chalkboard....that only comes out at this age

because of school). I've been on this list almost 3 years now, and I have

yet to hear of headaches being a part of RSS, but it *can* be an indicator

of a reaction to GHT if and only if the headaches are so severe that they

can't be controlled by normal methods.

I hope that helps some.

Debby

Re: Height of RSS Kids

> Ja' Aryn is 6 yrs old she is 39 inches tall and 32 pounds. She has started

> complaining about headaches. Are there any parents out there with kids 6

and up

> complaining about headaches. She is RSS also contact me

>

>

>

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Mes,

Yes, there are many RSS children who have learning issues. They are

mostly language based, so I would not hold onto that 71 IQ. Up until

the middle of June, I worked in a private school for kids with LD and

we saw that so often! Even with Max. He would test out at 73

overall, but we knew he was much higher functioning. The problem is

that most evaluators use the WISC III and it is very language based

and our kids can have difficulty with that. Does she receive

language therapy? I would have to know more about her to advize you

on whether or not to consider a change in schools. I am currently

setting up a private practice as an educational therapist, something

I did years ago, and my degree is in Special Ed and Elementary Ed. I

have tested more kids and set up IEPs and remediation for them - more

than I can count!

Email me at magicrss @hotmail.com. I'll be happy to help.

One thing to consider is how your daughter feels at school. Max felt

humiliated by the other kids in public school and was very much

separated from the rest of the class. If only I had known then what

he tells me now.... I just point out that he survived the hardest

part and has still turned out to be a wonderful young man. (He will

be 15 on Wednesday.) He's been through the worst and it's all

relatively downhill from here, at least socially. We have decided to

put him back in the public school for next year. He will start high

school and they have a great reputation for special ed kids there.

They have worked with us and put together a great plan for him. We

are excited. He won't like all the work he has to do, but they will

have to help him deal with it. I think they are really tuned into

Max, so we are not worried one bit.

Anway, I have gotten off the subject of your daughter. The one thing

to note and always remember is that the IQ score is only a number.

You have to remember to look at who she is and what she is capable of

doing. If we stuck to the numbers that they gave us for Max, he

would be in a totally different environment, training to sweep floors

or something. Look at the whole child. Always.

Jodi

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Mes,

I did not realize that you are in Singapore! What a different

environment you are in. Your poor daughter - she has to learn

Chinese,too! How confusing it must be for her.

Please keep a good eye on the social relationships. I know, as I

think I said in my last post, things started to go " wrong " when Max

entered the public school in first grade (he was in special ed until

then) and I never knew how bad they were until he was in third

grade. The kids would not sit with him. He ate lunch alone. They

teased him because he just did not work fast enough or understand the

concepts. And in third grade, the teacher just could not help him.

She was trying to deal with a class of 25 and Max was at the bottom.

She did not know how to teach him. It was not pleasant.

Also please know that you can email me at anytime. I am happy to try

to help or just to listen and support. I'm glad to know that you are

aware and working on things. But the culture over there is

different, so I may not know too much about the schools. My sister

lived in Singapore last year for about 6 months, but she has no

children, so she would have nothing to offer.

Jodi

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  • 2 years later...
Guest guest

Debbie,

How is your blood pressure? How is your blood sugars? Are you keeping hydrated?

I ask because these are the things that have been triggering my headaches. What meds do they have you on?

Hugs,

Tracie

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Debbie,

How is your blood pressure? How is your blood sugars? Are you keeping hydrated?

I ask because these are the things that have been triggering my headaches. What meds do they have you on?

Hugs,

Tracie

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Hi Tracie. My blood pressure is always on the low side and have never had any problem with blood sugars. I try and drink water all the time. As for medication I am on :Uniphyl, Serevent, Ventolin, Singulair, Zyrtec, Topomax, Cymbalta, Xanax, Duragesic Fentanyl Patch, Oxybutynin, Nexium, Primidone and Ritalin. I am not on any immunosuppressants right now. My white blood cell count was too low so they took me off of them. So thats it! Debbietiodaat@... wrote: Debbie, How is your blood pressure? How is your blood sugars? Are you keeping hydrated? I ask because these are the things that have been triggering my headaches. What

meds do they have you on? Hugs, Tracie

Yahoo! Mail goes everywhere you do. Get it on your phone.

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Hi Tracie. My blood pressure is always on the low side and have never had any problem with blood sugars. I try and drink water all the time. As for medication I am on :Uniphyl, Serevent, Ventolin, Singulair, Zyrtec, Topomax, Cymbalta, Xanax, Duragesic Fentanyl Patch, Oxybutynin, Nexium, Primidone and Ritalin. I am not on any immunosuppressants right now. My white blood cell count was too low so they took me off of them. So thats it! Debbietiodaat@... wrote: Debbie, How is your blood pressure? How is your blood sugars? Are you keeping hydrated? I ask because these are the things that have been triggering my headaches. What

meds do they have you on? Hugs, Tracie

Yahoo! Mail goes everywhere you do. Get it on your phone.

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Hi Tracie. My blood pressure is always on the low side and have never had any problem with blood sugars. I try and drink water all the time. As for medication I am on :Uniphyl, Serevent, Ventolin, Singulair, Zyrtec, Topomax, Cymbalta, Xanax, Duragesic Fentanyl Patch, Oxybutynin, Nexium, Primidone and Ritalin. I am not on any immunosuppressants right now. My white blood cell count was too low so they took me off of them. So thats it! Debbietiodaat@... wrote: Debbie, How is your blood pressure? How is your blood sugars? Are you keeping hydrated? I ask because these are the things that have been triggering my headaches. What

meds do they have you on? Hugs, Tracie

Yahoo! Mail goes everywhere you do. Get it on your phone.

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Hi Thanks for your advice. I haven't increased the med on my own because I think it causes drowsiness and with the other meds I am on I want to make sure its okay with the dr before we do. I actually am going to see my PCP today. He isn't the dr that prescribes the med (my neurologist does) but maybe he can help me out. Hope you are feeling well today, Hugs, Debbie Solberg wrote: Hi Deb, I am not on that medication but I do understand headaches. I hope you talk to your doc again and ask him about increasing the med. Please don't increase it on your own without talking to him. Just tell him what you've told us. They may have to do more

diagnostic tests to rule out other things. This time of year even sinus headaches from allergies may be increasing your pain. Mine turn into migraines and get so bad I have GI problems. My skin breaks out from it. I'm not saying that it what is happening to you but that your increased pain should be investigated first before increasing meds without doctor's supervision. I am not saying that is what you had in mind but often people do that without checking things out first with doc. ...saying a prayer for you today, too. hugs S.Debbie wrote: Hi all, I am sorry to say I am starting to get the bad headaches again. The ones that make it hard to hold your head up and make you

nauseous (sp?). I am already on Topomax 75 mg in the morning and 75 mg at night. Does anyone else take this? I was just wondering if this is a large dosage and if I should push for more from the neurologist. I think I asked him before (of course I can't remember correctly) and he said he didn't want to give me more. I suppose I can look it up on the web and try and find out what the highest dosage is. I was just wondering if anyone else here was on it to give me some advice. Thanks for listening. Debbie Blab-away for as little as 1�/min. Make PC-to-Phone Calls using Yahoo! Messenger with Voice. Celebrate Earth Day everyday! Discover 10 things you can do to help slow climate change. Yahoo! Earth Day

Talk is cheap. Use Yahoo! Messenger to make PC-to-Phone calls. Great rates starting at 1¢/min.

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Hi Thanks for your advice. I haven't increased the med on my own because I think it causes drowsiness and with the other meds I am on I want to make sure its okay with the dr before we do. I actually am going to see my PCP today. He isn't the dr that prescribes the med (my neurologist does) but maybe he can help me out. Hope you are feeling well today, Hugs, Debbie Solberg wrote: Hi Deb, I am not on that medication but I do understand headaches. I hope you talk to your doc again and ask him about increasing the med. Please don't increase it on your own without talking to him. Just tell him what you've told us. They may have to do more

diagnostic tests to rule out other things. This time of year even sinus headaches from allergies may be increasing your pain. Mine turn into migraines and get so bad I have GI problems. My skin breaks out from it. I'm not saying that it what is happening to you but that your increased pain should be investigated first before increasing meds without doctor's supervision. I am not saying that is what you had in mind but often people do that without checking things out first with doc. ...saying a prayer for you today, too. hugs S.Debbie wrote: Hi all, I am sorry to say I am starting to get the bad headaches again. The ones that make it hard to hold your head up and make you

nauseous (sp?). I am already on Topomax 75 mg in the morning and 75 mg at night. Does anyone else take this? I was just wondering if this is a large dosage and if I should push for more from the neurologist. I think I asked him before (of course I can't remember correctly) and he said he didn't want to give me more. I suppose I can look it up on the web and try and find out what the highest dosage is. I was just wondering if anyone else here was on it to give me some advice. Thanks for listening. Debbie Blab-away for as little as 1�/min. Make PC-to-Phone Calls using Yahoo! Messenger with Voice. Celebrate Earth Day everyday! Discover 10 things you can do to help slow climate change. Yahoo! Earth Day

Talk is cheap. Use Yahoo! Messenger to make PC-to-Phone calls. Great rates starting at 1¢/min.

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Debbie,

I take Nortriptyline for my headaches, 40mgs at nigh. Since feeling

better I've tried to go off them, but can't just yet, even taking 30mgs

and I still get a bad headache.

Right now I'm fighting the Resp. Crud, and the coughing with it is

causing terrible headaches too.

Good luck,

Marla

Hi all,

I am sorry to say I am starting to get the bad headaches again. The ones that make it hard to hold your head up and make you nauseous (sp?). I am already on Topomax 75 mg in the morning and 75 mg at night. Does anyone else take this? I was just wondering if this is a large dosage and if I should push for more from the neurologist. I think I asked him before (of course I can't remember correctly) and he said he didn't want to give me more. I suppose I can look it up on the web and try and find out what the highest dosage is. I was just wondering if anyone else here was on it to give me some advice. Thanks for listening. Debbie

---------------------------------

Blab-away for as little as 1¢/min. Make PC-to-Phone Calls using Yahoo! Messenger with Voice.

-- The Lord bless you and keep you:

The Lord make his face to shine upon you, and be gracious to you:

The Lord lift up his countenance upon you and give you peace.

Numbers 6:24-26

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Debbie,

I take Nortriptyline for my headaches, 40mgs at nigh. Since feeling

better I've tried to go off them, but can't just yet, even taking 30mgs

and I still get a bad headache.

Right now I'm fighting the Resp. Crud, and the coughing with it is

causing terrible headaches too.

Good luck,

Marla

Hi all,

I am sorry to say I am starting to get the bad headaches again. The ones that make it hard to hold your head up and make you nauseous (sp?). I am already on Topomax 75 mg in the morning and 75 mg at night. Does anyone else take this? I was just wondering if this is a large dosage and if I should push for more from the neurologist. I think I asked him before (of course I can't remember correctly) and he said he didn't want to give me more. I suppose I can look it up on the web and try and find out what the highest dosage is. I was just wondering if anyone else here was on it to give me some advice. Thanks for listening. Debbie

---------------------------------

Blab-away for as little as 1¢/min. Make PC-to-Phone Calls using Yahoo! Messenger with Voice.

-- The Lord bless you and keep you:

The Lord make his face to shine upon you, and be gracious to you:

The Lord lift up his countenance upon you and give you peace.

Numbers 6:24-26

Attachment: vcard [not shown]

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Guest guest

Debbie,

I take Nortriptyline for my headaches, 40mgs at nigh. Since feeling

better I've tried to go off them, but can't just yet, even taking 30mgs

and I still get a bad headache.

Right now I'm fighting the Resp. Crud, and the coughing with it is

causing terrible headaches too.

Good luck,

Marla

Hi all,

I am sorry to say I am starting to get the bad headaches again. The ones that make it hard to hold your head up and make you nauseous (sp?). I am already on Topomax 75 mg in the morning and 75 mg at night. Does anyone else take this? I was just wondering if this is a large dosage and if I should push for more from the neurologist. I think I asked him before (of course I can't remember correctly) and he said he didn't want to give me more. I suppose I can look it up on the web and try and find out what the highest dosage is. I was just wondering if anyone else here was on it to give me some advice. Thanks for listening. Debbie

---------------------------------

Blab-away for as little as 1¢/min. Make PC-to-Phone Calls using Yahoo! Messenger with Voice.

-- The Lord bless you and keep you:

The Lord make his face to shine upon you, and be gracious to you:

The Lord lift up his countenance upon you and give you peace.

Numbers 6:24-26

Attachment: vcard [not shown]

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Guest guest

Debbie, I can't help you with the Topamax. I've never taken it & it isn't something we gave out pregnant mamas. I'm sure sorry that you are having severe headaches again.

Ramblin' Rose

Moderator

Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: RE: HeadachesDate: Wed, 26 Apr 2006 04:42:00 -0700 (PDT)Hi all, I am sorry to say I am starting to get the bad headaches again. The ones that make it hard to hold your head up and make you nauseous (sp?). I am already on Topomax 75 mg in the morning and 75 mg at night. Does anyone else take this? I was just wondering if this is a large dosage and if I should push for more from the neurologist. I think I asked him before (of course I can't remember correctly) and he said he didn't want to give me more. I suppose I can look it up on the web and try and find out what the highest dosage is. I was just wondering if anyone else here was on it to give me some advice. Thanks for listening. Debbie

Blab-away for as little as 1¢/min. Make PC-to-Phone Calls using Yahoo! Messenger with Voice. ~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityNS CHAT:- Has been cancelled for now.Message Archives:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers Database:-Listings of locations, phone numbers, and instant messengers.http://groups.yahoo.com/group/Neurosarcoidosis/database

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Guest guest

Debbie, I can't help you with the Topamax. I've never taken it & it isn't something we gave out pregnant mamas. I'm sure sorry that you are having severe headaches again.

Ramblin' Rose

Moderator

Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: RE: HeadachesDate: Wed, 26 Apr 2006 04:42:00 -0700 (PDT)Hi all, I am sorry to say I am starting to get the bad headaches again. The ones that make it hard to hold your head up and make you nauseous (sp?). I am already on Topomax 75 mg in the morning and 75 mg at night. Does anyone else take this? I was just wondering if this is a large dosage and if I should push for more from the neurologist. I think I asked him before (of course I can't remember correctly) and he said he didn't want to give me more. I suppose I can look it up on the web and try and find out what the highest dosage is. I was just wondering if anyone else here was on it to give me some advice. Thanks for listening. Debbie

Blab-away for as little as 1¢/min. Make PC-to-Phone Calls using Yahoo! Messenger with Voice. ~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityNS CHAT:- Has been cancelled for now.Message Archives:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers Database:-Listings of locations, phone numbers, and instant messengers.http://groups.yahoo.com/group/Neurosarcoidosis/database

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Guest guest

Debbie, I can't help you with the Topamax. I've never taken it & it isn't something we gave out pregnant mamas. I'm sure sorry that you are having severe headaches again.

Ramblin' Rose

Moderator

Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: RE: HeadachesDate: Wed, 26 Apr 2006 04:42:00 -0700 (PDT)Hi all, I am sorry to say I am starting to get the bad headaches again. The ones that make it hard to hold your head up and make you nauseous (sp?). I am already on Topomax 75 mg in the morning and 75 mg at night. Does anyone else take this? I was just wondering if this is a large dosage and if I should push for more from the neurologist. I think I asked him before (of course I can't remember correctly) and he said he didn't want to give me more. I suppose I can look it up on the web and try and find out what the highest dosage is. I was just wondering if anyone else here was on it to give me some advice. Thanks for listening. Debbie

Blab-away for as little as 1¢/min. Make PC-to-Phone Calls using Yahoo! Messenger with Voice. ~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityNS CHAT:- Has been cancelled for now.Message Archives:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers Database:-Listings of locations, phone numbers, and instant messengers.http://groups.yahoo.com/group/Neurosarcoidosis/database

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Guest guest

Thank you Terri,

I am already feeling better, even the cough is getting better. Thanks.

Marla

Marla,

I take nortriptylene too. It really helps my sleep and the number of

headaches/facial pain and ear pain have decreased since I started. I

hope you are better soon.

Terri

Debbie,

I take Nortriptyline for my headaches, 40mgs at nigh. Since feeling

better I've tried to go off them, but can't just yet, even taking

30mgs

and I still get a bad headache.

Right now I'm fighting the Resp. Crud, and the coughing with it is

causing terrible headaches too.

Good luck,

Marla

Hi all,

I am sorry to say I am starting to get the bad headaches again. The

ones that make it hard to hold your head up and make you nauseous (sp?).

I am already on Topomax 75 mg in the morning and 75 mg at night. Does

anyone else take this? I was just wondering if this is a large dosage

and if I should push for more from the neurologist. I think I asked him

before (of course I can't remember correctly) and he said he didn't want

to give me more. I suppose I can look it up on the web and try and find

out what the highest dosage is. I was just wondering if anyone else here

was on it to give me some advice. Thanks for listening. Debbie

---------------------------------

Blab-away for as little as 1¢/min. Make PC-to-Phone Calls using

Yahoo! Messenger with Voice.

--

The Lord bless you and keep you:

The Lord make his face to shine upon you, and be gracious to you:

The Lord lift up his countenance upon you and give you peace.

Numbers 6:24-26

~~~~ *** ~~~ *** ~~~ *** ~~~~

The Neurosarcoidosis Community

NS CHAT:- Has been cancelled for now.

Message Archives:-

http://groups.yahoo.com/group/Neurosarcoidosis/messages

Members Database:-

Listings of locations, phone numbers, and instant messengers.

http://groups.yahoo.com/group/Neurosarcoidosis/database

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Share on other sites

Guest guest

Thank you Terri,

I am already feeling better, even the cough is getting better. Thanks.

Marla

Marla,

I take nortriptylene too. It really helps my sleep and the number of

headaches/facial pain and ear pain have decreased since I started. I

hope you are better soon.

Terri

Debbie,

I take Nortriptyline for my headaches, 40mgs at nigh. Since feeling

better I've tried to go off them, but can't just yet, even taking

30mgs

and I still get a bad headache.

Right now I'm fighting the Resp. Crud, and the coughing with it is

causing terrible headaches too.

Good luck,

Marla

Hi all,

I am sorry to say I am starting to get the bad headaches again. The

ones that make it hard to hold your head up and make you nauseous (sp?).

I am already on Topomax 75 mg in the morning and 75 mg at night. Does

anyone else take this? I was just wondering if this is a large dosage

and if I should push for more from the neurologist. I think I asked him

before (of course I can't remember correctly) and he said he didn't want

to give me more. I suppose I can look it up on the web and try and find

out what the highest dosage is. I was just wondering if anyone else here

was on it to give me some advice. Thanks for listening. Debbie

---------------------------------

Blab-away for as little as 1¢/min. Make PC-to-Phone Calls using

Yahoo! Messenger with Voice.

--

The Lord bless you and keep you:

The Lord make his face to shine upon you, and be gracious to you:

The Lord lift up his countenance upon you and give you peace.

Numbers 6:24-26

~~~~ *** ~~~ *** ~~~ *** ~~~~

The Neurosarcoidosis Community

NS CHAT:- Has been cancelled for now.

Message Archives:-

http://groups.yahoo.com/group/Neurosarcoidosis/messages

Members Database:-

Listings of locations, phone numbers, and instant messengers.

http://groups.yahoo.com/group/Neurosarcoidosis/database

Link to comment
Share on other sites

Guest guest

Thank you Terri,

I am already feeling better, even the cough is getting better. Thanks.

Marla

Marla,

I take nortriptylene too. It really helps my sleep and the number of

headaches/facial pain and ear pain have decreased since I started. I

hope you are better soon.

Terri

Debbie,

I take Nortriptyline for my headaches, 40mgs at nigh. Since feeling

better I've tried to go off them, but can't just yet, even taking

30mgs

and I still get a bad headache.

Right now I'm fighting the Resp. Crud, and the coughing with it is

causing terrible headaches too.

Good luck,

Marla

Hi all,

I am sorry to say I am starting to get the bad headaches again. The

ones that make it hard to hold your head up and make you nauseous (sp?).

I am already on Topomax 75 mg in the morning and 75 mg at night. Does

anyone else take this? I was just wondering if this is a large dosage

and if I should push for more from the neurologist. I think I asked him

before (of course I can't remember correctly) and he said he didn't want

to give me more. I suppose I can look it up on the web and try and find

out what the highest dosage is. I was just wondering if anyone else here

was on it to give me some advice. Thanks for listening. Debbie

---------------------------------

Blab-away for as little as 1¢/min. Make PC-to-Phone Calls using

Yahoo! Messenger with Voice.

--

The Lord bless you and keep you:

The Lord make his face to shine upon you, and be gracious to you:

The Lord lift up his countenance upon you and give you peace.

Numbers 6:24-26

~~~~ *** ~~~ *** ~~~ *** ~~~~

The Neurosarcoidosis Community

NS CHAT:- Has been cancelled for now.

Message Archives:-

http://groups.yahoo.com/group/Neurosarcoidosis/messages

Members Database:-

Listings of locations, phone numbers, and instant messengers.

http://groups.yahoo.com/group/Neurosarcoidosis/database

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Share on other sites

  • 1 year later...
Guest guest

In frequent-dose-chelation mathurhoden wrote:

I started getting headaches after I used another chelation product.

-----------Do you mind telling us what product, or what it had in it, and how

long you took it and on what schedule? It evidentally caused redistribution,

probably to the brain, if it's causing headaches. And sometimes it takes awhile

for these side effects to show up.-------------Jackie

I started back up on Andy's protocol about a month and a half ago. The

headaches went away. But after last week, their back. Any suggestions?

----------Can you tell us what you were taking, how much and how often? Did

you change anything during this time, like raise the dose or add ALA? You can

search past posts, because I think there was some recent discussion about

headaches, that might give you some ideas. Otherwise, it's hard to tell what

the other chelation product did to you, and it just might take more chelation to

get rid of them. And sometimes symptoms seem to come and go for people, so

maybe that's what's happening here. Do the headaches happen on round or off

round? Maybe you need to lower the dose.---------Jackie

I never used to get headaches, it's really getting frustrating.

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In frequent-dose-chelation mathurhoden wrote:

I started getting headaches after I used another chelation product.

-----------Do you mind telling us what product, or what it had in it, and how

long you took it and on what schedule? It evidentally caused redistribution,

probably to the brain, if it's causing headaches. And sometimes it takes awhile

for these side effects to show up.-------------Jackie

I started back up on Andy's protocol about a month and a half ago. The

headaches went away. But after last week, their back. Any suggestions?

----------Can you tell us what you were taking, how much and how often? Did

you change anything during this time, like raise the dose or add ALA? You can

search past posts, because I think there was some recent discussion about

headaches, that might give you some ideas. Otherwise, it's hard to tell what

the other chelation product did to you, and it just might take more chelation to

get rid of them. And sometimes symptoms seem to come and go for people, so

maybe that's what's happening here. Do the headaches happen on round or off

round? Maybe you need to lower the dose.---------Jackie

I never used to get headaches, it's really getting frustrating.

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