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...

[mimosa7]

Another question re: free MRI checks... Has this changed? I called both of these recently and checkup is hundreds of dollars for Canadians... No "mail in CD first" option... :(

[mimosa7]

Hello Kristel,

I am not sure if you are still active on this forum, but I saw you mentioned a lumbar pillow, as did someone else.

What led to my diagnosis actually is night jolts now and then (awakening in a semi parasomnic state) & my inability to sleep on the left side of my head (I can't even tell if a habit of not doing so or real numbness anymore). I use the lighest pillow available at IKEA and let me tell you, there is NO support but it works for my scalp.

Now you guys have me wondering if I truly have occipital neuralgia and an asymptomatic chiari...

Anyone else with PILLOW advice? Or rather sensitive scalp on one side?

Thanks guys :)

M.

[ssbaldwin80]

I have some experience with a lot of these medications. When I first had my surgery (it was 10 years ago) I was put on neurotin. I didnt really see effect. So my neurologist put me on Topomax. I have been on it ever since, probably 6-7 years. I have taken clonazepam, but my PCP didnt want me taking it too long because she said I could become addicted (I was 19 at the time).

Hope this helps.

Sabrie

[selmaS]

  Hi and welcome to the Chiari forum.

Thank u so much for sharing ur experience with clonazepam ....not everyone's chiari will progress the same to where u may need surgery....and u should make sure u do not have a CSF blockage  as it can be a detriment to ur health is left untreated...and meds can obscure what is going on.

We are always looking for new ways  to treat chiari that have been successful for others: )

   "selma"

[anb1113]

I was diagnosed with Chiari I in 1998 when I was 30.  My main symtoms were and are severe dizziness and brain fog.

For all these years, the symptoms were successfully treated with clonazepam 0.5 mg daily or as needed.  Benzodiazepenes are vestibular suppressants.  

I can highly recommend Chicago Dizziness and Hearing Clinic if you wish to be treated without surgery.

I am planning to get pregnant via IVF and cannot take clonazepam while pregnant.  Since there is no way I can exist for 9 months without medication, I have scheduled a neurosurgery consultation next week.

Good luck!

[selmaS]

HI and welcome to the Chiari forum.

I just started the Topamax as well...and I was taking it for 2 weeks and I got a diff HA, and got very fatigued and brain fogged...some of the symptoms I had gotten rid of with surgery...and did not think this med was right for me...plus, it affect my IBS issues....


Well the dr said the change in HA's and the addition of them and other issues were an indication that the meds were working to change the etiology of the HA.

I forgot to take the meds after that dr visit and the next day I felt horrible...began the meds again and the brain fog was gone,as was the added fatigue....

Now that I am on the meds a month, my IBS issues r clearing up....just the last few days....

I deff see a diff, but this med u do need to allow a time of adjustment.

May I ask, do u have a chiari specialist to help u ?

"selma"