What medicines are you currently taking to treat Chiari?

[WarriorMomma]

What medicines are you currently taking to treat Chiari?

This was posted in 2009; however, I am curious what the newbies are taking. Please let me know if I should add or delete some of the choices. Thanks.

[selmaS]

  Hi thanks for sharing more of ur story and ur Drs info, can I ask that u add it to our Drs thread that way all names are in one place : )

It seems many with chiari do have auto immune issues...I know several of us, including me have Hashimoto's....my Grandmother also had it...and I feel my dad  has chiari but not dx'd.

Many also have connective tissue disorders, that would be ehlers-danlos that seems to run hand and hand with chiari,

[roktta06]

I did not explain myself correctly when I posted "that I do not even need meds"... I mean pain meds.... I have been taking Effexor XR 150mg daliy, Clonopin .05mg mornings  and nights (to sleep well)  and Tryroid meds for my Hashimoto's disease which I do not necessarily blame it on Chiari...heredity is strong...my mother and two sisters and me have this disease.... I< only have Chiari.... this week has been specially hard on me because I have seasonal allergies. Imagine severe symptoms of allergies with Chiari, uff.... My ears are ringing like an alarm went off.... nonstop... I had an injection of  Diprospan:  contains betamethasone dipropionate equivalent to betamethasone 5 mg betamethasone disodium phosphate and equivalent to 2 mg betamethasone in buffered and kept sterile vehicle.
Therapeutic Action: Corticosteroid.
.....kind of helped my allergies but not quite well...I know as soon as my allergies subsided I will feel much much better!

I do not want to seem like I am an expert here on anything but  own experiences with my Chiari and syringomyelia .... I live in Mexico right now and have had wonderful treatment with loving caring adorable doctors. This is another huge post I could do to.... DOCTORS OMG! some I hate some I am in love with! :))) BUT my main Neurological Physician in in Arizona... I really adore him and admire his knowledge...Dr. Robert Paul Goldfarb at the Western Neurological Institute... he is a retired Surgeon now so I felt I need to find a good surgeon ( just in case) and I did.... Dr. Nicholas Theodore (www.bnaneuro.net) ...

Address & Contact Information:
Barrow Neurosurgical Associates, LTD 2910 North 3rd Avenue
Phoenix, AZ 85013
I think part of me feeling better is knowing that I have a doctor that CARES, and treats me with kindness and listens to me. I have his cellphone and can call  him any time and day..and  there he is for me!  

[roktta06]

Yes I do have Chiari!!! I had one surgery on April 7th 1987 to decompress my syrinxs ... it has remained the same size since then ... I consider myself very lucky because I have not had even half the symptoms that people post ! I did join a forum support for Chiari a long time ago...but decided not to read anymore because I as obsessing over sooo many information, symptoms, etc....My symptoms come by episodes...I can live almost a normal pain free life for so many days or even months and suddenly an episode of pain and symptoms come on manageably bad! I DO NOT like to take pain meds unless I am really suffering ...I guess I have a high tolerance to pain ....  But now that I feel that my age is a factor on having these episodes more often than  not! As I mentioned before the Biomagnetic Therapy I am on, is terrific on managing  most of my sysmptoms!!!!  I will gladly answer ANY question ... take care and God Bless you all!

[selmaS]

  Hi and welcome to the Chiari forum.

Thanks for sharing ur story with the med lyrica and ur pain, I wondered tho, do u have chiari and if so did u have surgery?

   "selma"

[roktta06]

I also tried Lyrica but with all the side effects that this medication gave me I ended up preferring the pain!!! The constipation was horrible and produced more headaches because of the strain... when I took the first dose I was laughing so hard I couldn't stop.. it felt like I was floating on air...I called my doctor and he said to stay home, lie down and try to give Lyrica  time to settle in. I did just that and all the symptons went away after 3 days except for my constipation which got sooo bad that I ended up getting of the Medication...  I have tried Dolo Neurobion Forte which I buy in Mexico and it does help a lot!!!!!! google it if you want to know more about this med. I am recently taking Effexor XR, Clonopin and thyroid medication. (developed hasimoto's disease , too) .... I am so afraid of damaging my liver or pancreas or something because of so much medication I am taking and have tried too. Now here comes the freaky part.... I went to this doctor (Not medical doctor, he is has a Doctors Degree in Bioenergy Medicine, "Medicina Quantica") in Guadalajara Mexico that treats patients with terminal diseases. My husband took me there. I guess he was desperate to try anything to help me...and he gave my a Magnetic Kit consisting of a vest full of magnets (lightweight) with a head band (with magnets) and a collar also with magnets....It is a long story but this took away all my muscle pain that I have been having for years!!!! completely....9 months pain free....hows that! Until now I have had just One episode of mild headaches that do not even need meds.... I hope this lasts...I will be you posted !!!!

my attitude toward this terrible condition has help me manage my symptoms and make my life a happy life.... I talk to my body parts..seems ridiculous but I do...I tell them how grateful I am to have legs that take me places...I am  grateful that I  have hands to work with , arms to lift, etc. and I take care of what I have ...I simply pamper what I have left!!!!

[ploink]

Combination of ibuprofen and paracetamol for occasional migraine or just for feeling less tired.
Picamilon used to help a little against headrushes, but not so much anymore since it got worse.
I got a two-week trial prescription for Fludrocortisone (Florinef). That seemed to help a bit against Orthostatic Intolerance symptoms (headrushes and lightheadedness). It got temporarily worse when I stopped.
For sleeping I sometimes take a preparation with Valerian root (300mg) and California poppy (200mg).
For tinnitus I tried a combination of Zinc and B12 supplements, but I am not sure that works because my tinnitus varies anyway.