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.

[MamboMom]

I took different doses of topamax and had horrible cognitive side effects. Currently taking zonisamide, voltaren, atenolol, amitryptalline, hydrochlorothiazide, and I feel like I'm forgetting one..but I'm probably due for another change because they've stopped working again..

[selmaS]

  The thread is on this first page of the forum.....here is the link-

  http://www.medhelp.org/posts/Chiari-Malformation/LIST-OF-CHIARI-SPECIALISTS/show/1503562

[roktta06]

Hi, I do you know were I an find more info on  the radiotherapy rhizotomy your posted about? where did you have it done? I can not find any susbstancial info on the web... maybe you do have a site I am not aware of? I am from Mexico.... so glad to hear your results are  "pain free" !!! My dream come true!

[roktta06]

since I am new to this web... How do I get to Dr. thread to post my drs. info??? oops...

[selmaS]

  Yup.....what's even more interesting is I was on meds b4 surgery for the Hashimoto's...post op my levels have been ok and no need for the meds. I still get tested every 6 months, blood labs and a ultra sound...all has leveled off  or something....which is good for me.

I also had a dx of restrictive lung disease yrs ago....I was on asthma meds, they did not help,so I was not on them long... but my breathing seems better post op too.

  Chiari affects all of our bodies functions...as it affects the brain stem the control center for our body.

    "selma"

[roktta06]

WOW! so Hashimoto's could me related to Chiari directly..I also have asthma..but my asthma has just recently flared up...(almost 30 yrs under control)  I also thought my dad had Chiari because he used to have tingling in his legs...restless leg syndrome, depression and anxiety issues... and at later age he had a  slightly curvature in his spine....no headaches that for sure!
I will certainly post my Doctors !!!! He had asma too. severe allergies!!! seasonal ....

[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.

[chriss130]

I currently only take Ibuprofen 400mg three times a day. I also take a muscle relaxer at night for help with my sleep. I average about 3 to 4 hours of sleep a night. I have taken Gaba, had to come off of it because of the side effects. It would make me real sleepy. Then I took Lyrica, for the first week had the feeling of being drunk all the time, after I went up in dose the side effects quit. Then the Lyrica quit working. It did help with the burning pain in the middle of my back and bottom lip. So Dr. Kula had me quit taking it. Now I am supposed to be taking Diamox have not received it in the mail yet. So I do not know how that one will work. My OBGYN put me on Ambien for sleeping, but I have not taken it yet, I am scared of the side effects. I am home all week by myself, so I am leary about taking any meds that will inter fear with my cholesterol meds.

[thieb9]

I currently do not take anything

[jennylynch]

i take percocet

[selmaS]

when this thread was started I wasn't on nething...I was on gabapentin...it did not work for me and affected my IBS....so I was not on that long, but the effects were long lasting...no fun.

I am on Topamax now for 3 months and at first thought it was no good, then I felt great after 2 to 3 weeks...now I can not tell if it is doing nething for me.....

[xmelax35]

Treximet, Hydrocodone, Toprol (because of the POTS), and Excedrin.

[kulili]

Currently -
Topamax (its been over ten years since I started taking it) and cymbalta daily, though I want to get off the cymbalta because it does nothing for me and I can't take the side effects.
Aleve or migranal on bad days and cross my fingers they work.

[jen0959]

i just finished a third steroid pack in a row.  also, taking tylenol with codeine.  head ache finally reduced from a 10 to about a 3.  do not know how long things will stay this way!

[Penguins57]

I'm on an antidepressant (Prozac) And nortiptaline (sp.?) these both help with headaches.

[c3m3k3]

I was taking a lot of painmeds. My NS is wonderful. He suggested a radiotherapy rizotomy, and then  taking 30mg miztazerpine each night.
A radiotherapy rizotomy is done under genereal aneasthesia in theatre. Two needles are put in the nerves both sides of the neck vertebrae just below the skull. Radio frequency is sent through to stun the nerves. This causes the measage of pain/headache not to be carried to the brain. Other pain like a cut in a finger will still be felt, but the neck and head pain is gone. I had my second one January 2010. I also use 30mg miztazerpine at night. The result - I use no pain meds. I do have all the other symptoms, just about each one and other as well not written on your sights, but never pain and this has changed my life. It wears off after about 20 to 22 months and then has to be done again. Living without the negative effect of painmeds however makes it worth the money and while. My medical insurance pays most of it. To find out more, talk to your neurosurgeon. I am from South Africa. .

[jen0959]

i am ending a steroid pack.  taking a low dose of neurontin.  just added tylenol with codeine.  pain has lowered some.

[n40066]

lyrica, topamax, tramadol, amitriptyline, cyclobenzaprine, vitamin d, tramadol, hydrocodone and promethazine.  i'm a walking pharmacy....oh...and plaquinil for the ra.

[skheavner]

I am on Dilaudid, Soma and gabapentin but am still in soo much pain