Headaches

[Guest guest]

Has anyone else with a tethered cord experienced extreme pain/cramping in the

back of your head/neck when yawning? This has been going on for over a year.

Also having a lot of occipital headaches and some vision disturbance (fluidlike

movement in left peripheral area)on occasion. My MRI of brain and cervical spine

were normal when done 6 months ago so I have to think it is related to my

tethered cord.

[Guest guest]

i started getting a pain in the back of my head/neck in August along with a

headache on one side of my head.  This was a constant daily pain, I woke up

with it every day.   I went to ENT who thought maybe TMJ and prescribed a

round of steroids and told me to make sure I used my night guard since I do

grind my teeth at night.  That didn't help so he referred me to a

neurologist.  Neuro thinks its migraines, started me on topomax.  I've been

taking it for just about 2 months now and I'm feeling much better.  I've only

had one severe headache that lasted about 4 days.  I still get the back of

head/neck pain but it's not nearly as bad and it's not constant. I have a follow

up with my neurosurgeon the first week of January so I will be sure to mention

it to him also as that was one of my concerns.  The neurologist had me go for a

brain MRI and said everything looked ok.  I did tell him I had TC surgery in

April and I was concerned there may be a

relationship.

 

To: tetheredspinalcord

Sent: Saturday, December 3, 2011 4:40 PM

Subject: Re: Headaches

 

The symptoms you describe are more commonly associated with Chiari, but I

have heard others on this list complain of headaches believed to be caused

by their TC. I was going to suggest a MRI to check for chiari, but you had

one. Is the neurosurg that reviewed your films experienced in diagnosing

chiari? If not, I would have a MD that is skilled in its Dx review them

(chiari is another one of those conditions like TC that can be tricky to Dx

in some cases unless the MD is very experienced with it).

Another suggestion since you said you are having some visual disturbances

is to have your eyes checked. I have chronic headaches due to a vascular

malformation in my brain that has hemorrhaged about 4 times. But my eyes

are VERY sensitive to any changes in my glasses Rx. Even .25 diopter can

cause me to have severe headaches. I remember one year when I was having

very frequent headaches (during the years when my cavernous hemangioma had

its multiple hemorrhages close together) and the headaches were so severe I

thought I was having another bleed. My neurosurgeon scheduled me for MRI

and there was no change. Turns out, my eyeglass Rx had changed drastically

(over a full diopter) in less than 6 mos. So, some people's eyes are very

sensitive to changes and can cause headaches. Just something to check out.

Regardless of the cause, you may want to try chiropractics or acupuncture.

When I say chiropractic, I don't mean what I refer to as " crunch and munch "

chiropractics (very dangerous, IMO, even for those without major spine

issues. Yes, there has been a 911 call when I was working to a chiropractic

clinic for a cervical adjustment that obviously went very wrong). There is

craniosacral adjustments and other forms that are very gentle. Some people

have had success with that. I know many, many people that swear by

acupuncture (my physiatrist is certified in acupuncture and treating neuro

problems with it. He wants me to try it and i want to, but he is too far

away for 3x week treatments. Just waiting to find someone local, but am

excited to try). Its always worth a try. With a reputable and experienced

practitioner, they certainly can't hurt.

Best wishes,

Jenn

On Sat, Dec 3, 2011 at 11:13 AM, lauraalbensi wrote:

> **

>

>

> Has anyone else with a tethered cord experienced extreme pain/cramping in

> the back of your head/neck when yawning? This has been going on for over a

> year. Also having a lot of occipital headaches and some vision disturbance

> (fluidlike movement in left peripheral area)on occasion. My MRI of brain

> and cervical spine were normal when done 6 months ago so I have to think it

> is related to my tethered cord.

>

>

>

>

[Guest guest]

Sounds like the neuro was right - and probably migraines and unrelated to

TC. Although it doesn't hurt to bring them up to your neurosurg at your

follow up - just to be thorough.

Topamax was a lifesaver. I took it for about 10 years. The other nice thing

about it is that since it is an anti-epileptic, it also works for

neuropathy! The only reason I quit taking it is that I had a compression

fracture and my neuropathy went through the roof and even maxing out of

topamax

couldn't control it and changed me to Keppra. I went back to the Topamax

after a few months on the Keppra (not that the side effects of Keppra were

that bad, I just wanted to deal with the side effects I had been dealing

with for 10 years and was used to). Only problem was that after I went back

to Topamax, I realized how badly it interfered with the language center of

my brain and I was so frustrated. I actually remember when I noticed it

kicking back in. I was laying on the mat in PT and was trying to tell a

story to my PT and could hardly get a word out. They just weren't there. I

was in tears I was so frustrated. I guess I forgot how to deal with the

side effects I had for 10 years in a matter of 4-6 mos.

Even though it annoyed me too much to go back to, the side effects were

quite manageable for me (after all, I did last over 10 years on it!). When

I first started it, I lost a ton of weight. I went from a size 14 to a size

4-6. I loved it! As with most anti-epileptics, they are not weight neutral

and often a MD will have to remove a patient from the Rx if they continue

to gain or continue to lose. My MD said that if I kept losing, he was going

to take me off of it. But my weight stabilized at 120 (a healthy weight for

my 5'4 " frame) and I got to stay on it. I loved knowing how the skinny half

lived - LOL (I have always been a size 12/14 since high school). I long for

those days now. After surgery #3 paralyzed me, the weight went back on and

no amount of topamax has let me lose it again (I admit it. I'm vain. If i

knew I could be a size 4 again even though I would sound like a dumba$$, I

would totally do it again LOL)

Aside from the weight loss and heavy affect on the language center of my

brain (major problems with word-finding. ie: if I wanted to say " cat " the

word would escape me completely leaving me with " the furry animal that says

meow " ), the only other side effect I had was some slight tingling in my

hands and face. I would notice that with a dose increase for a few weeks

(nothing painful) or when it was really cold. What I would notice on my

face was that I thought I had a stray hair tickling my face and after 100

attempts to snag that annoying hair, I would realize it was the topamax

tingling. Same kind of sensation in my hands (more my fingers). But, after

a few weeks at the new dose, I would only notice it if my hands or face got

really cold (fortunately I live in the south).

Glad to hear they found something that seems to be working. There is

nothing worse than a headache (IMO). You can't change positions to make it

better. Its just there. Feeling like your head is either going to explode

or your skull is being shoved down on top of your spine (for me).

Unfortunately I still get pretty frequent headaches because of the

cavernous hemangioma in my brain that hemorrhaged about 4 times. But thus

far since I stopped all the meds for neuropathy (that also work for

headaches), I've been able to manage them and haven't had to go to the ER

for one in years.

Jenn

> **

>

>

> i started getting a pain in the back of my head/neck in August along with

> a headache on one side of my head. This was a constant daily pain, I woke

> up with it every day. I went to ENT who thought maybe TMJ and prescribed

> a round of steroids and told me to make sure I used my night guard since I

> do grind my teeth at night. That didn't help so he referred me to a

> neurologist. Neuro thinks its migraines, started me on topomax. I've been

> taking it for just about 2 months now and I'm feeling much better. I've

> only had one severe headache that lasted about 4 days. I still get the

> back of head/neck pain but it's not nearly as bad and it's not constant. I

> have a follow up with my neurosurgeon the first week of January so I will

> be sure to mention it to him also as that was one of my concerns. The

> neurologist had me go for a brain MRI and said everything looked ok. I did

> tell him I had TC surgery in April and I was concerned there may be a

> relationship.

>