Medicines Used for Chiari

Hi All,

I went to my neurologist today and have some new meds he prescribed and ones he wants to prescribe at my next visit. I was wondering if anyone here uses Vimpat, which is a seizure medication and if so, why is this prescribed? Also, he next wants to start a depression medication. Does this mean he thinks I'm depressed (which is far from the truth)? I am confused, especially since he acknowledged the Chiari and was mad that the place I had it said the MRI cas considered normal when it indicated a Chiari Malformation. I am confused and don't know what to think now.

1 Like

The depression med will help with all around mood management and will probably help you rest better at night. Just check out which ones he wants to give you some have nasty side effects.

I haven't heard of Vimpat. When you pick up your prescription you can ask your pharmacist to explain it to you, or make another appointment with your doctor with a list of questions about why these were prescribed.

One thing I had my clients do (when I was still taking clients) was to have them practice B.R.A.I.N. anytime a medicine or procedure was suggested.

B - benefits

R- risks

A - alternatives

I - intuition (what does your gut say about it?)

N - nothing (can we wait? what happens if I don't take it/don't allow this procedure?)

Go over those five things with your health care provider until you get a satisfactory answer. :)

Good luck!

Katrina W.

Medications are often prescribed for off label use......I haven't taken Vimpat, but most of us have taken Neurontin (Gabapentin), Keppra, Dilantin, Valium,,Lumonal, Vitamin B6, Tegretol, Topamax, Lyrica, Lamictal,Vitamin E , Klonipin, Ativan, Diamox, Depakote, Savella

The list below are huge. Most epilepsy medications can be used for neuropathic pain & headaches. Many of the medications I listed are used for many diagnoses and symptoms. When a drug is developed and on the market for a while f it is found to help other medical issues.

I take Adderall XR for Depression because I can't take anti depressant.

Link from the FDA that gives the guideline for off label orphan drug use. "Orhpan Drugs" is the term used for medications for Rare Disorders:

Seizure Drug list Links :

Neuropathy Drug List Links: *** Really great Article that explains why different drug types are used***

Headache Medication lists: Great Article that explains why different medication types are used.

I really hope this post and links help explain why certain Medications are used for multiple symptoms and illnesses.

Tracy Z.

Vimpat is schedule V (5) controlled substance. It is a pretty powerful anti-seizure medication. Have you actually had partial seizures ?That's a pretty strong medication if you really haven't had any.

I was just signing on to add a “Medications” thread. Coincidence.

Anyways…what OTC meds do you use for the headaches? Will any even help?

Mine are in the back of my head radiating to an ear fullness feeling in my right ear. And lots of pain on sides of my head. Almost feels like I’ve been SEVERELY clinching my jaw ALL night.

I don’t have an Rx for headaches so was wondering what you guys use. I ask cause I have a sensitive stomach and am looking for something to just get me through.

All drugs are classified under 5 different groups or 'schedules'. Schedule 1 being the strongest drug on the market and schedule 5 being the weakest. Most narcotics that doctors prescribe fall into the schedule 2 category. Morphine is one of the strongest and that is true, it's usually prescribed as fentanyl. But most doctors like to stick in the schedule 2 zone and reserve the schedule 1 drugs for patients who are dying, ie...cancer.

Codeine is a schedule 3 classification and not very strong. The top three strong pain medications that Dr.'s prescribe are, Percocet, Demerol, and Diluadid. Some Dr.'s will prescribe a fentanyl patch for patients who have a chronic problem. The biggest issue with pain killers, is the amount of acetametaphine that is in them. Which will make someone with liver disease worse. I think demerol however, doesn't contain acetametaphine.
Vimpat is weaker than Codeine & Tylenol 3.
I take Adderal for an anti depressant because I cannot take other anti depressants and it is a Schedule 2.
Great Links on Drug Terminology, Medical Information & Legal safety Issues :

The link below is the DEA web site that lists all the drugs that are out there today and what there classifications are. You can see where different drugs line up against others as far as which ones are the strongest. Great Article Article on Schedule 2 vs Schedule 3 Medications....Really informative. Narcotic Schedule List Controlled Substance Act
Great Discussion and dialogue everyone !!! I have learned a lot from reading these links.
Tracy Z.

I am on anti-depressants it was originally for depression, but now I stay on them for headaches. When I am off of them I get headaches almost every day, but on them maybe once a week. They really do help.

Some antidepressants help with neuropathic pain. This could be why he prescribed that. I would ask him why he is prescribing what he is. You have a right to know.

Has anyone ever tried medical marijuana and if so any luck?

I’m on Neorotin, Baclofen and Effexor, for my headacges. I can’t be around loud noises or really bright lights…

The antidepressant medication can help with a number of things. I have muscular headaches and the antidepressant helped to relieve stress and also like someone else said it helps with neurological pain. Not sure about the other medicine. As far as the medical marijuana I haven’t had any but I know 2 ppl that are not Chiarians one had headaches the other had cancer and both swore by it helping with pain and just lifting their spirits. It helped the cancer patient maintain her appetite too.

hi ,

Good news, is that he has acknowledged the chairi( which we all sadly know is so rare, from medical people) the positive, is that he is trying something to ease the pain... anti -seizure medications i think are used in the first case, it may work with you not having to have decompression surgery straight away. They have to unfortunatly show they have tried everything possible , rather than push people into surgery not really needed in a small amount of people or for patients that really don't want surgery. hope this helps, try not to worry. It may seem that he does not care, but i'm sure he has your best intreast at heart. Ask him to explain things a little more clear.

I had been put on these meds, my symptoms got very worse in the end i had surgery, this has caused a few more problems with balance and heart problems. So untill you really can't stand the pain try the medication it worked for me for a little while ( well made the pain a little more bearable) hope this helps , take care xx

Light & Sound Sensitivities are horrible for me and many Chiarians.

My Dr. Just put me on Cymnalta, not for depression, but for pain. My insurance declined it saying there were seven other drugs that were just as effective, like Lexapro, Celexa, Zoloft…the only thing is they don’t share the same ‘properties’ and my Dr. Is in the midst of fighting this for me! I have been on Topamax, which worked well for a period is time, but then I had incredibly rare side effects that even mimic and made my Chiari symptoms worse. Finally, I am Wednesday of that, then started gralise…it was really helping, but I started having side effects from that as well. I am thankful that I found someone willing to fight for me. I am also going to week for a nerve block. I pray this new regiment will be what you need for best results!

I also have Encephalopathy. They think it is caused from trama, due to the decompression surgery or the Staph infection, in my head. It’s causing the restriction of blood flow and oxygen flow to my brain.

***Cymbalta. Sorry

Being Chiari is so rare there are not meds made for it directly. So I have found with my son they use meds for other conditions, Joji is actually on an antihistimine.

Hi All, Thanks for sharing your stories. I just did not understand why certain medications were being used. I have tried many, many meds without success and many of the depression meds used gve me worse side effects than the Chiari. However, this neurologist seems to be very thorough and caring so I think he is trying to see what works. He told me my blood tests came back and I have high liver enzymes, which we need to watch (not sure why this is the case, either, since i do not drink alcohol). Besides the meds I listed, I also have cambia and sumavel shots for the migraines/headaches that are severe. I have not yet tried the sumavel shot (because I usually sleep it off) but the cambia helps to dull the bad headaches and make them bearable. I do not have seizures but I do have pain/weakness nd numbness in my legs and arms. I think I read that vimpat can be used for neuropathy too. I guess what I am wondering is why so many meds at once? Cant they do more damage than what has already been done?

I just wanted to put my two cents in here. I take Topomax daily for pain control and use Hydrocodone for breakthrough pain whwen the headaches are real bad. Last summer my doctor put me on Cymbalta after I lost my daughter to cancer because I was falling into a depression. He told me it helps with pain as well. It certainly did, well, until recently. 5 had been taking hydro's regularly a few times a week, but rarely took them once i was on the cymbalta. Currently I am dealing with an onslaught of bad symtoms that started last week. Not sure why yet. Going to my Neurosurgeon on Tuesday.