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1303966 tn?1296740010

What kind of medications can you take for chiari?

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...
44 Responses
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620923 tn?1452915648
COMMUNITY LEADER

  Hi and welcome to the Chiari forum.

The member you are addressing your comment to, is not very active, so to let her know you have a question....send her a PM (private message) which will generate an e-mail informing her someone is trying to communicate.....

Lavender is helping to help someone rest, but I am not sure how bad your mom's symptoms are....they may help some, but may not remove all of them to a point she may not notice the benefits....

Has your mom had a CINE MRI?.Surgery?
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Avatar universal
Can you give me more information on which oils you used for chiari and how?  I am just getting into oils, and want to try out some on my mom to see if they help with her chiari.  I was thinking about trying peppermint for headaches, and lavendar on her feet to help her sleep.  Thoughts?
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Avatar universal
Thank you for letting me know :)  I've posted a question of my own :)
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620923 tn?1452915648
COMMUNITY LEADER

  Hi and welcome to the Chiari forum.

The member you are addressing your comments to, is not a regular active member......to let them know someone is trying to communicate, send a PM
(private message) which will generate an e-mail so they know to check in....

Other wise you may want to post to a newer thread where the active members are more likely to reply.
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Avatar universal
I'm also interested in what oils you would recommend, my 9yo daughter is now starting to suffer from her chiari symptoms and we would love to try ANYTHING :) to alleviate them...  thanks and I hope you get this!!  
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10612124 tn?1411428141
Can I ask what  type of oils you are using? I was decompressed in 2012. I Was doing fine for 8 mo and now have been out of work for 6 days with constant pressure headaches, I can barely hold my head up. Not to mention such weakness I have never experienced before. My sister in law sells the oils, and was going to send the peppermint, but have not rec'd it yet. I see my primary tomorrow and Friday a specialist. I do not want to take meds, but at this time I do not feel I have a choice, until I can figure something out to get me back to work. Please advise. I thank you for your time in this matter.
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620923 tn?1452915648
COMMUNITY LEADER

  I have to agree with you jiggle......we are all different and will need to see what works for us....
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1827123 tn?1383865276
In all fairness, I will say that I did not read all the above comments. I just saw the original post and question and thought I'd share my own experience.
I was placed on a good number of meds before being DX.  I had what I felt to be horrible experiences. I worked with my Dr. and after getting Dx, I began going off my meds. In almost 4 years now, I have not been on any. I only would use ibuprofen when I could no longer take the pain.  But taking it also sends my stomach into an uproar, so I tend to just tolerate the pain.  I have a childhood friend that broke her back and has suffered her own physical and mental illnesses because of her injury. She contacted me and told me that she made a change in her meds and at the time of typing this has been off her meds for 3 years now. I am open minded, but hugely skeptical and very slow to make any changes to my life.  After a pretty bad phase of pain and health issues, my husband encouraged me to call her back. "What could it hurt" was his response.  I didn't call.  My DH finally got in touch with her and I agreed to having her send me a package.  What I did not expect was to find my miracle in a box. ( I say "my" because I realize this is not for everyone!) She sent me a box of essential oils and called me to explain what each one was for and how to use them. She too was skeptical at the beginning of her own use.  I shook my head thinking, what have I just gotten myself into, but knowing I hate meds, having problems with my chiari/ eds/ thyroid/ and IBS, and a hubby giving me the "eye", I did what anyone would do.....I put them on my sick kid instead!!  3 of our 4 have lung issues and certain times of the year we deal with extreme flare ups and end up in the hospital for care.  I rubbed the oil on his chest, back, and feet like my friend instructed and placed my son comfortably on the couch.  The next morning the same kid that was miserable and in pain was up and walking around and telling me he was feeling better. I laughed at him and said "sure you do buddy" and winked at my husband and said "placebo affect".  When he returned to school and had no issues that day I said, "hmm".  My husband decided he would give it try to see if it worked. Hubby has horrible sleep and never feels rested so he rubbed lavender on his feet and went to bed. The next morning I woke up and saw he was still in bed, (he normally rises around 3am) and he was in a panic. For the first time ever, he slept through his alarm! "Hmmm" I said....and thought, ok, I'll use them and prove everyone that the "placebo" hype was just that! ......I had to hang my head in shame. They WORKED for me too! Gasp!  How could something so easy and natural actually work?  Sad but true! We are now an oil rubbing and inhaling homeopathic home!  I have had no issue that the oils didn't help me with.  They will not heal me or fix my head, or any other of my medical issues, but they DO help me with my symptoms and have helped me have a bit more of a normal life. I am a realist, and know that not everyone is open to this form of care, but for me and my house...they are loving the fact that they can first try an oil before they reach for a pill and we love that we haven't found a single side effect. Well, I guess you could call smelling like grandma a side effect- LOL as my sons friends informed him at lunch one day.  I am giving them a fair shot, and if I find out something that doesnt work or a reaction of any sort I will honestly report that as well, but darn it all - as of now, I only have positive response at this time.  In closing, if you need meds and can take them then by all means follow the doctors orders! But some people can find another option, and it can work...even when you want to prove it wrong ;)
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Avatar universal
I was diagnosed in 2008 with ACM after 8 months of illness and losing over 20 lbs.  the doctors sent me home from the hospital with MS and on klonopin, neurton and meclizine 3 times a day but after a different MRI they found the 5mm hernia and the neurosurgeon told me I had ACM.  But the meds I was taking obviously we're helping and he did not want to see me have surgery if the meds were helping.  And they are!!!!  Even down to taking my meds 1 time a day, yeah!  And yes a very thin pillow helps me a lot!
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620923 tn?1452915648
COMMUNITY LEADER

  Hi and welcome to the Chiari forum.

It is not if I had been DX'd as a child if I would have required surgery then....we are all different and some may go longer periods without surgery.

May I ask what symptoms she is having and what testing was done.....I was 48 when I got  a DX...but I did try to get a DX for as long as I could remember.....my surgery was 5 yrs ago...and I do not regret it.....but not sure I would have required surgery when I was younger....

Do not rush into surgery...find a true Chiari specialist, rule out ALL related conditions....and have more testing to see just how her Chiari is affecting her and her overall health.
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Avatar universal
Hello. My daughter is 6 and was recently diagnosed with CM.  I am reading your posts and I want to ask you whether you wish you'd been diagnosed early and gone through surgery as a child.  I am so scared to begin the process of neurosurgery on her tiny body but I would be so grateful to avoid migraines, meds, family stress and the other things you have had to go through.  This is not a condition I had ever heard of and I want to learn all that I can in order to make an informed decision on her behalf.  Please share your thoughts with me if you're up to it.  Thank you all and best of luck finding the relief you all deserve.  Blessings
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620923 tn?1452915648
COMMUNITY LEADER


  Hi and welcome to the Chiari forum.

I am so happy to hear u were able to get off the meds....most times meds do not help with the Chiari pain....and is used post op for surgical pain....

And I am also glad to hear ur Chiari is not bothering for some time....Chiari symptoms cycle and they can go for days, weeks, months and yrs and then for no apparent reason return.

I pray urs do not return, but would caution u to have a MRI to make sure the reason u have no pain is nerve impingement.....

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Avatar universal
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
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620923 tn?1452915648
COMMUNITY LEADER

  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.
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Avatar universal
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
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Avatar universal
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.



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620923 tn?1452915648
COMMUNITY LEADER

  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.
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Avatar universal
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...
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620923 tn?1452915648
COMMUNITY LEADER

  Hi,,,,this is an older thread and the member u r addressing is no longer an active member, u can try to PM (private message) her as it will generate an email informing her someone was trying to make contact.

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5640779 tn?1375813366
I just wanted to say I think your questions are excellent! I find myself asking the same ones every day.... I have reactions to meds too and agree that it's not the answer. I can tell you that PT helped a bit and I am considering a nerve block. Motrin 800 takes the edge off SOMETIMES along with laying down. Ultimately however, I know I need the surgery to correct the problem. I'm working on getting there mentally and I know you are too. Funny how we know what we need deep down. Good luck to you, I hope you feel better soon. I hope and pray we ALL feel much better soon :-) Lisa
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620923 tn?1452915648
COMMUNITY LEADER

  Hi and welcome to the Chiari forum.

This is an older thread so Jenny may not be as active as when this was posted so u may want to send her a PM (private message) this will generate a e-mail that someone is trying to make contact.

As for the meds, I was on TOPAMAX and it does help reduce pressure and help with HA's....not knowing what ur issues are or what type of pressure u have ....u may want to create a new thread and give some details and mayb one of our members can offer some insight for u,.

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Avatar universal
Great reply Jen, have you taken any of these yourself & seen improvement with chiari pressure?
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620923 tn?1452915648
COMMUNITY LEADER

Hi and welcome to the Chiari forum.

The member u r replying to may no longer be an active member on this forum, since this is an older thread u may want to try and contact them via a PM(private message) which will generate a e-mail that someone is trying to make contact or post a new thread so current members will be more likely to respond.

  There are many here waiting on surgery confirmation and those of us that have had surgery.....u r not alone and we will help u as best we can.
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Avatar universal
Hi was just Dx w/ Chiari and syringomylia, mine is also 8 mm long but I have mild symtoms.  Would love to talk w/ you about how u r doing since your last post in 2010, as I am also a mom of 3 busy kids and this is affecting our entire family.  Not sure what to do from here.
Thank you, Susan 43 old mom of 3, married 17 years
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