Heaches, any suggestions???

[StormyNights]

Headaches are getting pretty severe today, Drs keep wanting me to take migraine meds which only seem to make it worse, any suggestions until I can get one of these "medical professionals" to listen to me?

[selmaS]

I know what u mean about the cold....u should check to make sure u don't have raynauds or EDS...both give u an intolerance to the cold.


Mara- u might also have Dysautonomia issues.....I know heat can affect those that have this condition and it is not uncommon for chiarians to also have them.

There is a forum here on MedHelp.

"selma"

[MaraFowler]

I have to go easy on the heat, I get all woozey from a shower if it's even slightly too hot.. and by that I mean more than just a tiny bit over luke warm... I start feeling almost like I'm over heating and then the dizziness comes on..

the cold for me helps because it numbs everything and cools me down. my neck gets stiff when I get too warm... =\ guess everyone reacts to temps differently..

[StormyNights]

Not sure whether it is the cold that makes it worse or the tightening of the muscles from the cold, but it is definitely worse when I ice.

Stormy

[selmaS]

Yeah that too, but I wondered it being that cold made u hurt....I feel like it is burning.

"selma"

[StormyNights]

It makes the back of my neck stiff, not to mention the fact that it is COLD! lol

Stormy

[selmaS]

Question...ice drives u nuts....does it hurt??

I also can not use ice...it hurts me...so I wondered.....

"selma"

[StormyNights]

Heat seems to help, ice just drives me nuts, lol. My Mom is taking the little ones off my hands overnight, going to take it easy and maybe watch a movie or something. Maybe the reduction in stress will help.

[MaraFowler]

Have you tried taking riboflavin regularly? My neuro said you can take that along with tylenol and stuff like that.. personally I haven't tried it yet because little difficult to locate 100mg or more of riboflaven... the most I've found is 80mg in a multivitamin.. going to look in some specialty stores (will post and update when I find a bottle for a good price and the test results)
Also, an ice pack at the base of my skull usually helps me especially at night
Good luck sweety!

[selmaS]

Hi...I am sure even tho u r new to ur dx, but that the symptoms are something u have delt with a long time.

Do ask alot of questions and make sure ur NS is a chiari specialist, one that makes it a focus of his practice.Most NS and NL only have the 5 min gloss info which is the big problem for those of us with this condition.

I hope ur chiropractor knows enuff to not manipulate ur neck or spine in that area as it can affect ur chiari.

There r many NS and NL that dot not feel chiari is a symptomatic condition.

To try and keep symptoms at bay  restrict ur lifting, and excess activities that will affect ur HA's.....do things to minimize like stay out od the direct sun....bright lights...loud noises.....try to relax.....meditation, warm baths ect......

Please keep us posted
"selma"

[StormyNights]

Just found out about this about 2 weeks ago. Not scheduled for surgery yet, doctors out here seem to be a little out of date on their Chiari info. I am at 6mm and have seen 1 NS, 3 Orthos,  1 Physical Therapist, 1 Neurologist and a Chiropractor, you name it I have been there. I've even tried getting new glasses hoping that would help. Chiropractor is the only one that seems to know anything about Chiari aside from what was learned during a 5 minute gloss over in med school. The rest of them want to give me migraine meds, even when I try to tell them that it just makes the headache worse, or they send me off to yet another Dr. Next person in line is a Dr at the University Med Center out here who is supposed to know a lot about Chiari, hoping he is all that I have heard. That's on the 20th of August, so still almost a month away.

[plumsaki]

I'm sorry you're having a rough headache day!  I've been having more and more recently.  I've been on Topamax for almost 2 years now and while it keeps my migraines at bay, it does nothing for my headaches.  There is definitely a difference.  Nothing takes away the Chiari headaches except time for me.  I get irritated when my friends tell me to "just take an Advil".  I only wish ibprofen or Tylenol helped!  I also use a heating pad and have a lavendar infused rice bag that I use around my neck.  What kind of Dr are you seeing?  Are they a Chiari specialist?  

I hope you feel better soon!!!

[phoenix63]

welcome, this a great place to vent, to get advice, make friends etc.Headaches are one of our biggest challenge, I like to use heat, either my heating pad, or a rice bag that wraps around my neck, or a long towel I roll up and wrap around my neck and tie at the ends. with this you can either put ice in it or heat.I wish you the best of luck  with this and your future health.have you had surgery yet, or are you going to soon? what mm is your chiari?
suzanne