What kind of medications can you take for chiari?

[kricklekrin]

I'm currently not on any medications other than natural supplements.  I was on Keppra, but it changed my personality drastically.  

Has anyone decided to take medications instead of surgery?  What I'm trying to say is to control the symptoms rather than opt for such a drastic measure such as surgery.  

I'm one of those people who do not like to take medications because of the side effects and what the meds may do to my health down the road.  

What kind of medications are available to treat chiari?  Is it better to treat symptoms, or have the surgery and hope this eliminates the symptoms?  

When do you know it's time to have surgery verses controlling symptoms with medicatons?

I hope I'm making sense...

[MONAMFR]

I too have this condition. Started as numbness in fingers. Eventually I was prescribed Percocet and Oxy. I weighed a whopping 105lb and was literally being prescribed every 15 days 120 perc 10 and 180 30mg Oxy! Since my Dr. said to take it..I did...I was physically addicted to a point I didn't even know if the pain was still present. I quit cold turkey..and called my Dr and told him to send me all my records bc I no longer wanted to be his patient. I still don't know what the heck he got out of it. It was HARD to stop the meds..VERY VERY HARD. But thankfully I have not had ANY pain..(from condition) since and its been about 4 years. Food luck to all of you. Its always int he back of my head if the pain will return..but as for now...IM HAPPY! I hope you all find relief and if it is with meds..just be careful!! xoxoxo Peace and Love

[selmaS]

  Hi and welcome to the Chiari forum.

Thanks for sharing a part of ur Chiari journey....I am happy to hear the surgery was a benefit to u......

Surgery is not meant as a cure and is not expected to relieve ALL our symptoms....so it is important to know that going in as well as ALL related conditions u may have which may also cause the same symptoms to continue post op.

As for Chiari being rare, with that I take objection....it is not rare, but well informed and experienced Drs are rare. I agree we need to research the Drs we see ....and to help we do have a list of Drs the members have been to and liked....(see Health Pages)

And TOPAMAX  can be beneficial....it has some possible side effects like all meds, but it also has an adjustment period.....2 weeks to get it into ur system and adjusted, during that time u may feel extremely fatigued , foggy....but it does go away....it also depends on the dosage....we are all different in how we respond to meds and I feel I did benefit from using this med.

I hope u continue to share ur journey with us.

[mouse71]

I see these post are a few years old. But it took me 7 neuro surgeons out of those 7 i believe it was 3 saying I needed the arnold chiari surgery. At the age of 36 I finally took the advice of the most amazing neurosurgeon had the surgery yea it was a had recovery but Im doing much better. I do still have the headaches which now after many different ones my pain management doc is trying me on topamax im very nervous I also had many other surgeries with the same neurosurgeon on my spine. I have ddd all the way down my spine. I love my surgeon he is an amazing guy. I have some memory loss from the surgery but doing much better. I never knew I had this rare disease until i had an aneurysm repair at 32 in my internal iialic atertary when I couldnt walk very well they did an mri from the brain down found i had arnold chiari and ddd all the way down. Havent worked since is the only down fall. Do research alot of it on the surgeons

[mimosa7]

Hi Selma,

I think I mentioned somewhere on the forum that I had to change family doctors to get an MRI.  I saw a neurologist through ER but he only tested my foot/hand nerves and assumed I have migraines.  I was told to stick to advil for episodic migraines. Sigh.  

Then I found a headache specialist (neurologist title) in Toronto that I feel comfortable with and she advised high doses of B2 and Magnesium (400mg/ea) for 3 months before we consider triptans etc.  1-2 advils works for my migraines still.

In the meantime, I started seeing a good homeopath in Toronto as well and I see a difference in my migraines frequency already.  However, the head pressure and stabbing remain chronic and daily with maybe 5 pain free days a month.  

The original ER neurologist for a report of my MRI at my request (that the new family doctor issued) and suggested Neotryptaline (sp?) at small doses for my chiari chronic pain and migraine management/prevention.  I read that it works great but fluid retention and inability to urinate are frequent side effects so NO thanks.  It's already hard enough looking lean without lifting weights...

Now, the neurosurgeon I saw is the one who does not think medication is the answer in my case.  I do respect his advice as I asked for medication that would affect my obstructed flow (like Diamox) rather than pain masking anti-depressants (a bit against them due to side effects and long term effects, no hard feelings anyone)...

Finally, no decompression... just 12mm herniation with 1 year of symptoms limited to occipital head pain, head pressure especially few hours after waking up (neurosurgeon is convinced it is not a CFS leak although I did suspect it at times given the PM head pressure) and eye floaters and pulling sensation + frequent migraines.

I did complain of sinus pain for years but other than that was a perfectly happy young adult, sigh.  Weight lifting initiated this for me FYI... I got really fit... Wasn't worth it..

I wonder about Topamax. I will google it. I am seeing the neurologist I decided to stick with beg of August who will go over Neurosurgeon's report so I will ask her re Topamax... I read stuff re Cannabis too but I never touched that stuff before and I am so scared... I will let you know what my spinal MRI shows (hopefully nothing Lol... I don't even know if this is a lol-ing matter but hey) in September.

[selmaS]

  Hi...have u had decompression surgery?

I was put on TOPAMAX post op and it help with the oddball HA's I would get, and it was after I ran out that I saw just how much it was helping....

But u have to keep in mind we all respond to meds differently....sad ur Dr is not willing to give it a try.

[mimosa7]

Hi,

The neurologist I saw originally before consulting with a Neurosurgeon here in Toronto suggested small dose of Neotriptalyne (spelling?).  Reviews are great but so are the side effects so I stuck to homeopathy hoping to fix migraines I get biweekly.

However, my head pressure has been so chronic that I would love to tye Diamox/Topamax but the Neurosurgeon said in his experience these meds are not a good solution/do little.

Sigh...