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I notice I get a headache if I forget to take my folic acid.

>

> I get a headache from the Methotrexate, and boy can it be a doozy.

> Lori

> http://home.comcast.net/~queenstitcher/

> http://stitchingqueen.multiply.com

>

>

>

> [ ] Headaches

>

>

> Does anyone find headaches as a part of their side effects from

any of their

> meds?

> <http://geo./serv?

s=97359714/grpId=101478/grpspId=1705061498/msgId=

> 108623/stime=1201953490/nc1=5191949/nc2=5191951/nc3=5191953>

>

>

>

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Both my mother and I had problems w/headaches. My mother had SLE, I've been

diagnosed w/RA but am starting to appear closer to her SLE as I get older.

I suffered from severe headaches around my eyes for years, and noticed after

several attacks when I was in my teens early 20's that I lost some of my night

vision. After several years of being treated for migraines/sinus infections, my

eye doctor noted that after each of these headaches, I had more optic nerve

damage and was losing more vision-these " headaches " were actually attacks of

optic neuritis. I also have glaucoma and have had no more " headaches " since

being put on medication for glaucoma and neuritis/uveitis.

maggiemac52 <maggiemac52@...> wrote:

I notice I get a headache if I forget to take my folic acid.

>

> I get a headache from the Methotrexate, and boy can it be a doozy.

> Lori

> http://home.comcast.net/~queenstitcher/

> http://stitchingqueen.multiply.com

>

>

>

> [ ] Headaches

>

>

> Does anyone find headaches as a part of their side effects from

any of their

> meds?

> <http://geo./serv?

s=97359714/grpId=101478/grpspId=1705061498/msgId=

> 108623/stime=1201953490/nc1=5191949/nc2=5191951/nc3=5191953>

>

>

>

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YES! I am Hydroxychloroquine and Salsalate among other things and I

get pounding headaches. I was about to ask the same question because

I'm not suppopsed to take anything like Advil which is what gets rid

of my headaches.

>

> Does anyone find headaches as a part of their side effects from any

of their

> meds?

>

<http://geo./serv?s=97359714/grpId=101478/grpspId=1705061498/msgId=

> 108623/stime=1201953490/nc1=5191949/nc2=5191951/nc3=5191953>

>

>

>

>

>

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I've had a headache almost everyday for years - the most consistent

pain is right between my eyes but at its worst I'm incapacitated and

my whole head hurts. I was diagnosed first with sinusitis, then

migraines, now I'm wondering if it's the degeneration of my cervical

spine. I've tried many treatments, the headache just keeps getting

worse. I'm currently taking prednisone, inderol, and neurontin for my

headache. I hoped the neurontin would eventually kick in so that I

could stop or decrease some of the other medicines but I think I might

be having some side effects from the neurontin. I have also started

physical therapy with spine specialists and I'm regaining some

flexibility. Maybe my HA's a little better, hard to know why but I

sure enjoy having more relaxed muscles. ez

> >

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Are you on MTX? When I was on it, I had Migraines out of this world! With

loss of vision and stroke like symptoms!My doctor sent me to an ENT who said

I had ear problems, as my balance was way off too, If I got up to fast or

turned my head a certain way, I would pass out. My FP also sent me for an

MRI of my head, to rule out other bad things, and I kept telling all of them

as the MTX went up higher in dosage, the symptoms were worse! They would

not believe me !!! OHH it cant be that! Well I took myself off it, and

then did a very small dose of it , just to find out for myself if I were

imagining this or not. So I stopped it for two weeks, started a very low

dose of it, and all they symptoms returned ! So I presented my case to my

rummy, and he goes I think you are right !!!! Those symptoms have never

returned !

Debbie A

Have a great day !

-------Original Message-------

I've had a headache almost everyday for years - the most consistent

pain is right between my eyes but at its worst I'm incapacitated and

my whole head hurts. I was diagnosed first with sinusitis, then

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  • 3 weeks later...

Have your hormones levels been checked?

Kate G

Hashi's

AS

At 05:16 PM 2/20/2008, you wrote:

>Does anybody get really bad headaches with their fibro. My rhuemy did

>a Vitamin D test and it was low. So I am taking some for three months.

>I also have an appt. finally at a pain clinic. I need some relief

>soon. The pain is wearing me down.

>Chris

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Hi -

My vitamin D level was fine but I have degenerative arthritis in my neck as

well as TMJ which both give me headaches. I don't know yet if Fibro adds to it.

That would be my luck!! :)

Hamilton <hammy412000@...> wrote:

Does anybody get really bad headaches with their fibro. My rhuemy did

a Vitamin D test and it was low. So I am taking some for three months.

I also have an appt. finally at a pain clinic. I need some relief

soon. The pain is wearing me down.

Chris

ltdavis_jrdavis@...

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

Be a better friend, newshound, and know-it-all with Mobile. Try it now.

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I get them all of the time with my FMS. Usually its

the neck muscles that are all tight and cause a

tension headache. I have a TENS unit now to use on

the muscles there. I still get headaches though but

not as much as I used to.

--- Hamilton <hammy412000@...> wrote:

> Does anybody get really bad headaches with their

> fibro. My rhuemy did

> a Vitamin D test and it was low. So I am taking some

> for three months.

> I also have an appt. finally at a pain clinic. I

> need some relief

> soon. The pain is wearing me down.

> Chris

>

>

________________________________________________________________________________\

____

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Find them fast with Search.

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Yes, I get headaches on average 3-4 times a month. I wake up with a

headache and it can last for up to 3 days. I haven't found a med that can

get rid of it, anything I take (Motrin 800mg) generally just dulls the pain.

I've found that there are pressure points in my neck that I can press on and

that will sometimes help (or else it just hurts more than the headache and

fibro!). I also learned some techniques at a pain clinic that have really

helped me to live with this (biofeedback, mind/body methods, and

acupressure). I've had fibro for 24 years (yikes!) and all I take now is

Flexeril at night.

/

[ ] Headaches

> Does anybody get really bad headaches with their fibro. My rhuemy did

> a Vitamin D test and it was low. So I am taking some for three months.

> I also have an appt. finally at a pain clinic. I need some relief

> soon. The pain is wearing me down.

> Chris

>

>

>

>

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Hi Chris!

I meant to mention too that my physical therapist was

able to help me with some neck stretches and exercises

that help the headaches. If you aren't in physical

therapy and its possible that you can see one, it

might help you out alot too:)

--- <lhtella@...> wrote:

> Yes, I get headaches on average 3-4 times a month.

> I wake up with a

> headache and it can last for up to 3 days. I

> haven't found a med that can

> get rid of it, anything I take (Motrin 800mg)

> generally just dulls the pain.

> I've found that there are pressure points in my neck

> that I can press on and

> that will sometimes help (or else it just hurts more

> than the headache and

> fibro!). I also learned some techniques at a pain

> clinic that have really

> helped me to live with this (biofeedback, mind/body

> methods, and

> acupressure). I've had fibro for 24 years (yikes!)

> and all I take now is

> Flexeril at night.

> /

>

> [ ] Headaches

>

>

> > Does anybody get really bad headaches with their

> fibro. My rhuemy did

> > a Vitamin D test and it was low. So I am taking

> some for three months.

> > I also have an appt. finally at a pain clinic. I

> need some relief

> > soon. The pain is wearing me down.

> > Chris

> >

> >

> >

> >

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I also get headaches alot, but have all my life. My primary dr gave me imitrex

for the bad ones, which seem to be tension/stress related. I will usually have

to go home take an Imitrex & go to sleep for at least a couple hours for it to

go away.

On a side note, I feel so bad for everyone on here that is in so much pain. My

pain has never been severe (thank goodness) & has only been in my hands & feet.

Is it because the pain has gotten worse even while on weds? Or war your RA not

treated early? My prayers are with you all in pain!

Tricia

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

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  • 2 months later...
Guest guest

Sometimes drinking alcohol and taking LDN can cause a headache. What I have noticed is that when there is a side effect from LDN either it might be too much of a dose or a drug interaction problem. Some anti-depressants, anti-anxiety, thyroid and any opiate drugs and alcohol.Nan Rekowski <nancyrekowski@...> wrote: I also suffer 'hangover' type headaches from LDN. However after 1 month of LDN use, the headaches have lessened in severity and have a shorter

duration. I [just] consider it a trade off for the relief of other more dibilatating symptoms. I have been advised by others that the headaches may be from aspirin use or the filler in the LDN capsule

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  • 8 months later...

headaches can be results of toxines being released and also the

tiredness.try to drink extra water during the day it might help your

body get rid of the toxines.

>

> A request to others... I have been experiencing headaches when I

take LDN for the last several months. It feels sort of like a

hangover where there is the headache but also grogginess, tiredness

and generally being out of it.

>

> I've ruled out the following:

>

> I don't believe it is the filler as I tried liquid LDN for a month

and still had headaches.

> I have stopped drinking alcoholic drinks.

> A doctor checked me for Candida and didn't see it.

> I have gone down to 1.5M but got headaches again.

>

> Does anyone have other suggestions on what to look at?

>

> The only thing that works is to stop taking LDN for a couple days

and start again.

>

> I do feel benefits from LDN such as reduced spasticity and less

urinary urgency, and there has been no progression as far as I can

tell, but I think going on and off of it like I am is probably not

good.

>

> Thanks,

> Greg

>

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I would guess that this is the reason too. Either that or they all croaked from LDN toxicity, and are now too busy being dead to reply.

But really, the answer is likely that the same questions are covered, and most members probably stay active a year or so, and then new people gradually come in and replace them.

I have been on LDN over a year, and so far it has been wonderful. I am still sick, but it helped me get out of bed, and changed what I would call my inflammatory profile.

In a message dated 1/7/2009 1:30:37 P.M. Eastern Standard Time, covo@... writes:

Since you're playing devil's advocate I'll be honest and say most of them got sick of writing the same stuff over and over due to so many people coming on here just wanting things handed to them on a plate and not even bothering to read the low dose naltrexone.org website or use the wonderful Search facility provides. Even in the past few days people have asked questions that have already been answered dozens of times previously.I have a commitment to helping people try to get onto LDN, as do others on here, hence I'm still around and have been since 2003. It does get frustrating at times though........ The other thing that causes experienced people to get sick of the group and leave it once they know what they're doing is the number of off-topic posts.mtlcute wrote:> TO ALL;> I am wondering where all those people went who were writing very > often on posts in 2004 and now they are not acitve memebers anymore? > Whats up with that? If there are indeed over 5000 memebers on this > group, it seems I see about 25 people in the last 2 weeks who are > usually the same people writing and responding. > I am sure I will be striking a nerve with alot of people, but I do like > to play devils advocate and do alot of research before I commit to LDN> Thank you>> New year...new news. Be the first to know what is making headlines.

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>

> Any chance that the headaches might be caused by an overworked

> pituitary gland?

> Just a thought!

>

>

TO ALL;

I am wondering where all those people went who were writing very

often on posts in 2004 and now they are not acitve memebers anymore?

Whats up with that? If there are indeed over 5000 memebers on this

group, it seems I see about 25 people in the last 2 weeks who are

usually the same people writing and responding.

I am sure I will be striking a nerve with alot of people, but I do like

to play devils advocate and do alot of research before I commit to LDN

Thank you

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Hi et al,

Thanks. I haven't explored overworked pituitary glands being the cause of the

headaches. Do you have any info on how to test for this and/or resolve this?

....or suggestions on finding out more about overworked pituitary glands?

I did a Google on this but not much comes up.

Thanks,

Greg

PS. I thought I would respond to the group as perhaps others are struggling with

this...

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i do not understand what is your problem.those that write or they

know the answer or they have experience the same.when you want to

learn about ldn you must go to the official site and to you tube and

see the video from the confrences.every one with an auto immun

sickness should try ldn.there is much to gain and nothing to loose.i

have seen people with copd ,crohn ,AS and artritis psoriatica

gaining much through ldn.

> >

> > Any chance that the headaches might be caused by an overworked

> > pituitary gland?

> > Just a thought!

> >

> >

> TO ALL;

> I am wondering where all those people went who were writing very

> often on posts in 2004 and now they are not acitve memebers

anymore?

> Whats up with that? If there are indeed over 5000 memebers on this

> group, it seems I see about 25 people in the last 2 weeks

who are

> usually the same people writing and responding.

> I am sure I will be striking a nerve with alot of people, but I do

like

> to play devils advocate and do alot of research before I commit to

LDN

> Thank you

>

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Since you're playing devil's advocate I'll be honest and say most of

them got sick of writing the same stuff over and over due to so many

people coming on here just wanting things handed to them on a plate and

not even bothering to read the low dose naltrexone.org website or use the

wonderful Search facility provides. Even in the past few days

people have asked questions that have already been answered dozens of

times previously.

I have a commitment to helping people try to get onto LDN, as do others

on here, hence I'm still around and have been since 2003. It does get

frustrating at times though........ The other thing that causes

experienced people to get sick of the group and leave it once they know

what they're doing is the number of off-topic posts.

mtlcute wrote:

> TO ALL;

> I am wondering where all those people went who were writing very

> often on posts in 2004 and now they are not acitve memebers anymore?

> Whats up with that? If there are indeed over 5000 memebers on this

> group, it seems I see about 25 people in the last 2 weeks who are

> usually the same people writing and responding.

> I am sure I will be striking a nerve with alot of people, but I do like

> to play devils advocate and do alot of research before I commit to LDN

> Thank you

>

>

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To Marla,

There are other websites where you can find information on LDN, too.

I have been a member and have been asking and responding to posts here

for more than a year. I have seen A LOT of new members during this year, and

and surprisingly the last two months of this year it seemed to register even more than usual. Those who have been here since 2004

responding on new members questions are experienced and devoted and are all doing a valuable job for

the rest of the public that just register, ask their questions and leave. Some people

feels that it's exciting and necessary to front a medicine in this way, and / or do other

voluntary jobs / events for LDN. I hope you agree that not all have to be active members, so there

is no reason to doubt about the number of members.

Have you really been researching LDN since 2004?

Ingrid

From: mtlcute <mtlcute@...>low dose naltrexone Sent: Wednesday, January 7, 2009 7:03:38 PMSubject: [low dose naltrexone] Re: Headaches>> Any chance that the headaches might be caused by an overworked> pituitary gland?> Just a thought!> >TO ALL; I am wondering where all those people went who were writing very often on posts in 2004 and now they are not acitve memebers anymore? Whats up with that? If there are indeed over 5000 memebers on this group, it

seems I see about 25 people in the last 2 weeks who are usually the same people writing and responding. I am sure I will be striking a nerve with alot of people, but I do like to play devils advocate and do alot of research before I commit to LDNThank you------------------------------------

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hang around long enough to see how some interactions go, you'll see why people disappear.

Thank those 25 who are still posting.

There's some with information to share, the rest are looking for information to gleen :)

Namaste

-- LarryGC/LarryLDN LDN Info rrms

[low dose naltrexone] Re: Headaches

>> Any chance that the headaches might be caused by an overworked> pituitary gland?> Just a thought!> >TO ALL; I am wondering where all those people went who were writing very often on posts in 2004 and now they are not acitve memebers anymore? Whats up with that? If there are indeed over 5000 memebers on this group, it seems I see about 25 people in the last 2 weeks who are usually the same people writing and responding. I am sure I will be striking a nerve with alot of people, but I do like to play devils advocate and do alot of research before I commit to LDNThank you------------------------------------

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Maybe a year or so ago I and the others here thought the same thing.

Where are all these members and what are they up to now?

I went back in the archives and emailed many of them.

The results were some email addresses were no longer valid,

some emails went unanswered,

the ones who did reply most were still using LDN and a few had

stopped for various reasons.

I asked why they no longer participated in the group and their

answers varied.

I would love to hear from this lady and find out how she is doing:

During the trial, a close friend of Dr. Bihari's daughter had three

acute episodes of multiple sclerosis over a nine-month period with

complete spontaneous recovery from each. Because of his knowledge of

MS as a neurologist and of recent evidence of an autoimmune component

in the disease, Dr. Bihari started his daughter's friend on

naltrexone at 3 mg every night at bedtime. She took it for five years

with no further attacks. At that point, when a particular month's

supply ran out, she stopped it because of some denial that she had

MS. Three and a half weeks later, she developed an episode of

weakness, numbness, stiffness and spasms in her left arm and resumed

LDN, which she has stayed on since. This episode cleared and over the

12 years since, she has had no further disease activity.

http://www.low dose naltrexone.org/ldn_and_ms.htm

Art

--

> >

> > Any chance that the headaches might be caused by an overworked

> > pituitary gland?

> > Just a thought!

> >

> >

> TO ALL;

> I am wondering where all those people went who were writing very

> often on posts in 2004 and now they are not acitve memebers

anymore?

> Whats up with that? If there are indeed over 5000 memebers on this

> group, it seems I see about 25 people in the last 2 weeks who

are

> usually the same people writing and responding.

> I am sure I will be striking a nerve with alot of people, but I do

like

> to play devils advocate and do alot of research before I commit to

LDN

> Thank you

>

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  • 1 month later...
Guest guest

Hi Sherry,

I used to get shooting pains from the right side of my face so bad at times I

would need to be hospitalized.  After MRI's CAT Scans and Spinal Taps they

realized I had chronic sinusitis which was most likely the cause of the severe

pain. The only thing that would take the pain away was prendisone, pain killers,

nasal sprays and antibiotics. 

I even had root canals done because I had shooting pain in my teeth so I though

until I realized it was still there after the root canals.  I didn't even want

to be numbed I just wanted him to do it and the pain of that was nothing

compared to the pain I had.  I finally went and had an endoscopic surgery to my

sinuses and since then I have had very little if any shooting pains. 

I originally went to neurologist after neurologist but they were more interested

in the CMT and was like pulling teeth to get them to think outside the box.  My

suggestion is look outside the box too and it may not be related to CMT. 

I think related issues that work along side CMT can impact on pretty much any

other condition because we may be more likely to have trouble sleeping and

without good REM sleep it can cause headaches or exacerbate other unrelated

conditions.  I remember the pain and its the worst pain I can remember and was

incredibly scary at times because I thought my head would explode.

Also sometimes they can do a blood patch which is taking blood from your arm and

injecting it in your spine which 80% of the time will stop the pain

immediately.  They do this also for people who had spinal taps and there was

some spinal fluid leakage.  I had that procedure done at the pain clinic and

found to be extremely helpful. 

I was told at the ER years ago too take a max dose of acetiminephine then

ibuprophen back and forth and that helps migraines.  Also being in a dark quiet

room can help.  I wish you luck and hope you find what is causing these

migraines and that they treat it because it sounds like it can be treated in

most cases.

Andy

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