headaches

[Guest guest]

HI Sherry,

I HAD TO WRITE TO YOU, BECAUSE SOMETHING YOU SAID REALLY GOT MY ATTENTION. I

CAN'T LAY ON ONE OF MY EARS NEITHER BECAUSE IT HURTS. IT'S A STRANGE PAIN BUT,

I ONLY FEEL IT IF I PUT PRESSURE ON IT. I NEVER THOUGHT OF IT AS SOMETHING

RELATED TO " CMT " BUT, NOW READING ABOUT YOUR CASE, I THINK IS TOO MUCH OF A

COINCIDENCE. I ALSO, SUFFER FROM MIGRAINES.

Betania

[Guest guest]

Hi sherry,

i get the same bad headaches, tinging of my scalp, numbness on one side of my

face, i have even felt numb on a side of my body, head to toes, had several

doctors try and figure this out but they were clueless and blamed it on the CMT,

because the problem is not constant the docs said it was probably the nerves

going haywire and CMT is the cause, i was told this. I can go 5-6 months without

the numbness feeling but have headaches daily and i take acetominphine daily to

get through my days, i know what your feeling, its strange and so far i havent

heard a good explanation except its the CMT, gee thanx doc!

jim

[Guest guest]

Hi Sherry,

The way you describe your pain makes me think it could be shingles. It typically

only affects a single dermatome, which is the sensory distribution of a single

nerve. It is a reactivation of the virus that causes chicken pox. I had a case

last year that sounds very similar. It started with a painful scalp, mostly when

lying on it or washing my hair - ouch! and progressively got to be more and more

intense until one day I screamed when my son touched my hair - felt like an ax

in the side of my head. It involved the left scalp, ear, neck and upper

shoulder. After several days of this a crop of vesicles appeared. At that time I

went to the ER and got anti-virals (which make you feel awful) and percocet

(which doesn't really stop the pain, just the caring about it). Now it reappears

when I'm really stressed out, not the vesicles (which are contagious to those

who've never had chicken pox, so you must quarantine yourself when they are

open), but the pain flares now and then, thankfully never as bad as it was.

While we're on weird symptoms: I wonder if anyone has had what I'm experiencing

right now for the 3rd time in about 5 years. I wake up with the left tip of my

tongue densely numb. Gradually over about a week it becomes more lightly numb

but begins to involve the entire left side of the tongue. Today at about 1 1/2

weeks out I feel like when they put the topical lidocaine in your mouth before

giving an injection, the way everything on that side of your mouth including the

lip get lightly numb. The first time it happened I was whisked into a CT scanner

before I could blink. No strokes found. The next time, they were puzzled and

asked me what I'd like them to do. I didn't go in this time, what's the point? I

imagine it will come back eventually. It has been so strange, it feels like that

" corner " of my tongue is missing and I find myself checking it in the mirror

again and again. Interestingly, when I touch it with my finger I can taste the

salt on my skin.

Holli

[Guest guest]

My headaches are the result of bad disks in my neck. I assume they are bad from

looking down all the time while walking. A few adjustments at the chiropractor

and I am good for a month.

[Guest guest]

Jim & Sherry,

Have you tried to connect the symptoms with food or additives you are

eating? I have a friend who does not have CMT but has the symptoms you

describe whenever he eats anything with MSG in it. Might be worth checking out.

Sue

[Guest guest]

Well...I'm still waiting to hear results on the MRI...and the headaches

continue... And I can totally understand what you mean about looking down all

the time while you are walking....I probably do the same thing. My insurance

won't pay for a chiropractor....at least I don't think so...guess we'll just

wait for the MRI results. Thanks for your response . Hope your headaches

stay away!

Hugs,

Sherry

[Guest guest]

I never thought of that Sue...we'll see what happens after I get the MRI

results. Thanks for your response.

Hugs,

Sherry

-- Re: Headaches

Jim & Sherry,

Have you tried to connect the symptoms with food or additives you are

eating? I have a friend who does not have CMT but has the symptoms you

describe whenever he eats anything with MSG in it. Might be worth checking

out.

Sue

[Guest guest]

Betania,

Thanks for your reply. Yes, it is a strange pain....I hope yours isn't

bothering you too much right now. I am still waiting for the MRI results.

so we'll see. Take care.

Hugs,

Sherry

[Guest guest]

Thanks for your response Andy. I really don't think this is a migraine... if it

is, it's like none I've ever had before. I wish I had the results of the

MRI....then I would know what the heck is going on and where to go next.

Hugs,

Sherry

[Guest guest]

Hi Sherry,

My MRI didn't show anything but the x ray of my neck did. Basically I have

compressed disks L 2 and L 3 if I remember correctly. Once I went to the

chiropractor with such an awful headache,I had to wear

sunglasses on the way there. I was adjusted and with in a minute my eyes felt

better. By the time I got out to the car my headache was gone. My head felt sore

from the headache but not hurt. I was a believer from then on. Most

chiropractors give a discount for cash patients. It might be worth it for you to

get an x ray.

[Guest guest]

I have headaches but are not like migraines. They come on after taking the

methotrexate, for me. I took my methotrexate yesterday and this morning as

usual had a light headache. I have told my Rheumatologist this before and

he said to take it with food. It still does not help though.

Irish

[Guest guest]

Hi. My name is Pam and I am pretty new to the group. You are all such warm and

caring people. I wanted to respond about the headaches. I had been on

Methotrexate for around six months and started getting terrible headaches. I

couldn't come up with a clear thought if my life depended on it. My rheumy asked

me to reduce the dosae but the headaches continued. I am now off methotrexate

completely and waiting to see what fun drug they want to try next. Take care.

Pam

[Guest guest]

Make sure he's hydrated, he has enough magnesium, and you are doing chelation at

3-4 hour intervals. Also a low enough dose. Dehydration can cause major

headaches.

Barb

[ ] headaches

my son seems to be getting 1-2 headaches a week now with chelation.He can't

tell me this I am presuming it b/c he is crying.I have to give tylenol due to

aspirin allergy.I also massage his head and he stops crying after 15 minutes.

He is 60lbs and gets 12.5 DMSA and 5mg ALA.too much???jake's mom

[Guest guest]

Headaches or pain resolving with head massage could indicate sinus

problems (the massage drains them). This in turn points to yeast, which

is very much aggravated with DMSA. How is your yeast protocol?

nikkibarbieri wrote:

>

> my son seems to be getting 1-2 headaches a week now with chelation.He

> can't tell me this I am presuming it b/c he is crying.I have to give

> tylenol due to aspirin allergy.I also massage his head and he stops

> crying after 15 minutes.

>

> He is 60lbs and gets 12.5 DMSA and 5mg ALA.too much???jake's mom

>

>

[Guest guest]

Also make sure you are giving plenty of anti-oxidants like vitamin C and E.

TJ

________________________________

From: nikkibarbieri <nikkibarbieri@...>

Sent: Wed, February 3, 2010 2:47:41 PM

Subject: [ ] headaches

 

my son seems to be getting 1-2 headaches a week now with chelation.He can't tell

me this I am presuming it b/c he is crying.I have to give tylenol due to aspirin

allergy.I also massage his head and he stops crying after 15 minutes.

He is 60lbs and gets 12.5 DMSA and 5mg ALA.too much???jake' s mom

[Guest guest]

Our dr recommend Mortrin unflavored over tylenol

Natalia

Sent from my BlackBerry® smartphone with Nextel Direct Connect

[ ] headaches

 

my son seems to be getting 1-2 headaches a week now with chelation.He can't tell

me this I am presuming it b/c he is crying.I have to give tylenol due to aspirin

allergy.I also massage his head and he stops crying after 15 minutes.

He is 60lbs and gets 12.5 DMSA and 5mg ALA.too much???jake' s mom

[Guest guest]

B2- ribloflavin is used to treat migraines.  You might try this instead.  B2

helps enzyme function in the body.

From: nvibbott@... <nvibbott@...>

Subject: Re: [ ] headaches

Date: Thursday, February 4, 2010, 1:20 AM

 

Our dr recommend Mortrin unflavored over tylenol

Natalia

Sent from my BlackBerry® smartphone with Nextel Direct Connect

[ ] headaches

 

my son seems to be getting 1-2 headaches a week now with chelation.He can't tell

me this I am presuming it b/c he is crying.I have to give tylenol due to aspirin

allergy.I also massage his head and he stops crying after 15 minutes.

He is 60lbs and gets 12.5 DMSA and 5mg ALA.too much???jake' s mom

[Guest guest]

> my son seems to be getting 1-2 headaches a week now with chelation.

This would have meant yeast overgrowth here.

Dana

[Guest guest]

Children's Motrin is better for autistic children.

TJ

________________________________

From: nikkibarbieri <nikkibarbieri@...>

Sent: Wed, February 3, 2010 2:47:41 PM

Subject: [ ] headaches

 

my son seems to be getting 1-2 headaches a week now with chelation.He can't tell

me this I am presuming it b/c he is crying.I have to give tylenol due to aspirin

allergy.I also massage his head and he stops crying after 15 minutes.

He is 60lbs and gets 12.5 DMSA and 5mg ALA.too much???jake' s mom

[Guest guest]

Hello Tameria

My son Aedan is 7. He gets headaches when he gets car sick. He does not complain about stomach aches when we drive but get bad headaches sometimes. I guess that it may have something to do with his vision, though I am not sure

In a message dated 2/28/2010 9:25:51 P.M. Eastern Standard Time, nativejoyo510@... writes:

Hello all, I was wondering if anyone, children or adults, who have BPES have been experiencing headaches or migraines. I usually have them for several days in a row every now and again, so I was wondering if there was any ties. If so, how long do they last, how severe are they, etc. Thx, Tameria CO, USA

[Guest guest]

Hello all, I was wondering if anyone, children or adults, who have BPES have

been experiencing headaches or migraines. I usually have them for several days

in a row every now and again, so I was wondering if there was any ties. If so,

how long do they last, how severe are they, etc. Thx, Tameria CO, USA

[Guest guest]

I get them as a result of being photophobic. I am very sensitive to bright light.

-Chris

From: nativejoyo510 <nativejoyo510@...>Subject: blepharophimosis headachesblepharophimosis Date: Sunday, February 28, 2010, 9:18 PM

Hello all, I was wondering if anyone, children or adults, who have BPES have been experiencing headaches or migraines. I usually have them for several days in a row every now and again, so I was wondering if there was any ties. If so, how long do they last, how severe are they, etc. Thx, Tameria CO, USA

[Guest guest]

Hiya Tameria,

Oh yeah, Migraines have been a less than welcome part of my 27

years of life. Between glare headaches, changing prescriptions for glasses as a

kid, and some food triggered intolerences, I've had more than I dare to count.

The food intollerence is for foods with high levels of Amines and Salicylates.

(basically flavour, and smell)

By avoiding these foods I rairly get a migraine anymore.

My trigger foods are Potatoes, Avocado, Banana, Cheese, Wine. Also most any

inflamitories and apirin based pain killers.

I'm looking into if Oranges, Orange Juice and Strawberries are the next things

to be added to the list. ~if chocolate goes on the list I'll just have to live

with the pain~

Walking through the perfume deaprtment can trigger one as well because most

perfumes have a high levels of Salicylates.

There's nothing quite like having that woman wearing the knock-'em-out perfume

in the mall, and knowing which stores she's been in because you can feel the

beginings of the migraine nausia getting worse as you follow her lead.

Ahhh the joys of life.

*Big Hugs*

Be good

Belinda in Brisbane Australia

--- In blepharophimosis , " nativejoyo510 " <nativejoyo510@...>

wrote:

>

> Hello all, I was wondering if anyone, children or adults, who have BPES have

been experiencing headaches or migraines.>

[Guest guest]

Me and my daughter emy get migraine, we both have BPES my mum and grandmother did too, they didnt have BPES.

I went to a doctor who specialised when emy was little, as she had migraine in her tummy, and the school were concerned so we got it checked out. He diagnosed migraine, she is 14 and now gets them in her head too.

Clare - herts uk

Hello all, I was wondering if anyone, children or adults, who have BPES have been experiencing headaches or migraines. I usually have them for several days in a row every now and again, so I was wondering if there was any ties. If so, how long do they last, how severe are they, etc. Thx, Tameria CO, USA

& Tonikka

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