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Chiari Malformation Community
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Avatar universal

Medication

Hi! Another newbie here.  I went from never having headaches, working out 5 times a week, raising my 3 children and working almost full time to dealing with headaches all the time in the span of a few months. I can't play with my children, I work but with modifications, and I can barley work out.
After having a MRI they say I chiari. I went to a neurologist and he was very hopeful of my situation and seems to think that it is treatable with medication and watching it, rather than surgery. He prescribed topamax. Any thoughts? If there is a medication that would be helpful or vitamins or anything I can do.  I just want to be the active person I have always been. I am so lost and emotional. Thanks for responding
17 Responses
620923 tn?1452919248
COMMUNITY LEADER

  Hi and welcome to the Chiari forum.

One thing most Chiari specialists will tell you to stop your workouts if they cause you to strain. The area of the xpinal cord and brain stem where blood and CSF fluid need to flow is constricted and this is what causes the pain and other symptoms...when we strain we are trying to force even more fluids to rush thru there at a faster rate making us feel worse with that activity.

Topamax is a med most Drs will try with this BUT it can take 2 weeks to adjust to the meds once you have the right dosage ...but in those weeks you may find yourself in the worse fog and so fatigued ...but the meds will not get rid of the headaches it may change them some......

May I ask, did you have an injury or a stressful event prior to your symptoms flaring?

Make sure ALL related conditions are ruled out and have your CSF flow checked....Not all Drs are well informed or experienced with Chiari and related conditions.....so push for more testing to rule everything out b4 you resign yourself to just monitoring it.
JMHO

Avatar universal
As far as "an event" not really. I tried out cross fit and I started to get headaches. I believe it was the strain that may have triggered it. That was back in March. The general practitioner wanted to say the headaches were cauSed by allergies. Coughing makes them horrendous. Fast forward to the summer and I would get several headaches a day in which I would have to just sleep or lie with ice packs. They get so bad that my 4 year old knows to bring me an ice pack. My husband has stated to me that we have a hard rim being able to do anything Bc I always have headaches. Than I got my MRI. Now it seems to all make sense.  
It's just all so confusing Bc every time I try to research chiari everyone seems to get surgery. I have no clue where to go from here. Is it possible to live semi pain free? I haven't found anything that says what may or may not help. Like I said I just want to be able to play with my kids. Run around and play.
620923 tn?1452919248
COMMUNITY LEADER

  Yess, coughing, sneezing and laughing will make them worse as will straining to eliminate waste.

To minimize symptoms there are activities to avoid....I use to save up energy for special days....for example if I knew I had a big day coming I would rest up b4 so as to make sure I did not over do it so I felt ok for the bigger day....we all have to test out what issues affect us to know what to avoid .but the list is helpful in guiding us as to type of activities.

Chiari symptoms cycle so it is possible what you are dealing with now may lessen and you could go a few months or years with little to no symptoms OR it may go the other way and just increase....

I had on and off symptoms as log as I can remember and had no idea the reason....it was not until a drop attack that caused other injuries that required surgery that I was sent for more testing to figure it all out....almost a year later I got my DX at age 48.....and another year b4 I went for surgery.....

Before you decide to wait for surgery or if you need it more testing needs to be done....in the meantime try to relax...stress will only make the symptoms flare. Below I will include the list of activities to avoid~~


Activities to avoid with Chiari...

The subject no one wants to hear about, but chiari and syringomyelia are life-altering conditions and you WILL have to face that and change some major things in your life. You will find people with these conditions who  continue to do some of these things, but they do so with the knowledge that it can severely alter their current condition for the worse. The following are just some of those No-No’s:

NO neck stressing activities, such as roller-coasters, 4-wheelers, skateboards, horseback riding, motorcycles, wave pools, backpacking, falling asleep in chairs, extended reading with head bent ect.. Anything that “jars” your head and/or spine is a definite no-no.

NO neck stressing sports, such as water skiing, snow skiing, snow boarding, sky diving, bungee jumping, diving, playing tennis, basketball, soccer, football ect (Just trying to cover all the basics – you get the idea.)

NO contact sports.

NO Chiropractor!- Especially at the neck for chiarians and for those with a syrinx, no deep tissue in the area of ur syrinx.(The chiro should be well versed on Both CM/SM)

NO straining which includes straining to reach something, or even straining during a bowel movement. Take a fiber supplement every day if you tend to get blocked up.

NO moving furniture or heavy objects around by pushing, pulling, lifting, or any other way. Pick up nothing heavier than a gallon of milk. I know – that sounds impossible, but keep that gallon of milk in the back of your mind.

NO moving around in the dark!

NO putting yourself into stressful situations or relationships. Try to relax, avoid noise and keep your neck muscles relaxed.

NO twisting your spine – try to keep a good posture with your spine lined up and straight.

NO bending over. lower yourself to the floor by bending your knees – not your back.

NO sudden spinal/neck movements.

NO using the hair wash sink at the hair salon.Instead ask for the special try that most hair salons have that are designed to accommodate people who are unable to bend their head/necks backward.

NO Lifting more than 15 lbs when strength training or backpacking.Heavy lifting is generally not recommended especially if you have a syrinx.

AVOID sleeping in a head down position.

Avoid cervical traction.

Avoid lumbar punctures, spinal taps or epidurals, unless it is a well informed chiari dr....if a LP is drawn too quick it can cause the tonsils to herniate even further.Done incorrectly, this can be very dangerous for a chiarian.

AVOID doing any kind of activity that causes you to bend your head backwards, such as: bending back to gargle, washing hair in the shower ect.

AVOID food with too much salt.Especially for woman during their premenstrual period.

DON'T participate in any physical activity that puts you in jeopardy of falling and or creating trauma of any kind.

DON’T try to keep commitments when you’re feeling badly. Listen to your body.


AVOID sleeping in a head down position.

Avoid cervical traction.

Avoid lumbar punctures, spinal taps or epidurals, unless it is a well informed chiari dr....if a LP is drawn too quick it can cause the tonsils to herniate even further.Done incorrectly, this can be very dangerous for a chiarian.

AVOID doing any kind of activity that causes you to bend your head backwards, such as: bending back to gargle, washing hair in the shower ect.

AVOID food with too much salt.Especially for woman during their premenstrual period.

DON'T participate in any physical activity that puts you in jeopardy of falling and or creating trauma of any kind.

DON’T try to keep commitments when you’re feeling badly. Listen to your body.
Avatar universal
I can relate to the "normal" life you once had. I too have 3 children and when they were young I kept up as best as possible with all their school and after school activities. I pushed myself to do things because they're only young once. They're all grown up now but when my symptoms began I struggled and started going downhill. It was hard on them to see mommy be in so much pain.

I haven't been in the work force for some time due to the fear of being fired for being sick or dropping things... But for the last 10 years I have been an animal rescue volunteer. I won't say it's not work but it's deff rewarding. I still even after diagnosis went religiously and pushed myself too far.in my recovery post op I find that I miss seeing the animals tremendously, but I'm certain I will be back at it someday.

Just listen to your body and take breaks as much as possible. It's a long road
7489440 tn?1442011976
Be wise in the choices you make. In January 2013 I was first diagnosed with Chiari. I was told no horseback riding. But I didn't take the doctor seriously. When all I knew was horseback comps. I use to rodeo, barrel racing, show horsing, dancing. Anything I could enter I did. I wasn't going to sit out and lose my first place ribbons. So that spring I started training like I usually do. The day before my first competition, I decided to do one last run through. My brother checked the course for snakes didn't find any and told me to go on. So I did. On my last jump there was three black snakes by its post. Spooked my horse and my horse throw me off.

Before this happened I knew I possibly needed surgery to decompress my brainstem since they believe my kinked brainstem is caused by the compression of the brain. My doctor was working with me because of my huge fear of surgeries. But now its an urgency to have it and I feel like I am being pushed towards it. Because two of my main nerves are being pressed up against my skull after being thrown from my horse.

Its been two years since I last rode my horse. And me not listening to my doctors has caused this. I could of prevented it all if I just listened in the first place and took it easy. Now I am faced with a surgery and possibly never ever riding on my horse again. I suffer headaches for three weeks straight of each month, I have trouble finding what I need to say, problems with eye sight, burning sensations in my neck and shoulders, I struggle with cross stitching and crocheting now, and I get painful sensations in my hands and feet as well as swallowing issues.

It is not fair but we move on once we find out we have this condition. We find strength in each other to keep on moving on. We try to find away to not let the depression get to us. If we do it will just make things a lot worse. Topamax is the first step of treatment. I used it for two months it didn't help none. Best of luck and listen to your body when it is telling you something.
Avatar universal
Thanks for your encouragement and stories. It's a tough road to travel. It's almost like a death. I'm still just crying over spilled milk. I fortunately am still able to work and still able to function. I am just trying to understand this disease more. Is there a resource that I can go to? Is there a database? Or just us,  la group of the effected? Thanks again for everything. Oh and when I would explain this to someone. What is the easiest most concise way to explain it? It so new to me!
620923 tn?1452919248
COMMUNITY LEADER

  For more info you could try some of the different Chiari specialists...they have web sites with info....and it is very to the point and easy to understand.

There is also us here....we do our best to give , share and support.

It depends on who that someone is....remember most Drs do not feel this condition ( not disease) should cause us any issues since we "had it since birth"  The 20 minutes they spend on Chiari in med school does not help us....so if Drs are not up on it or believe it is an issue, it is hard to find family and friends that understand it as well.

Have the person you are trying to explain it to join us here....sometimes it is just reading the posts that will help them understand..or have them read the sites of the Drs....

There is a lot of info on the web.....not all is factual....and you need to know which info is  something to listen to or dismiss....it takes time to weed thru it....and we do try to help guide you to the info that will be the most help.
Avatar universal
I see that you are actually from the same area as me! Can you recommend a dr? I was thinking that I would have to look into going into the city but I think I'm blessed by finding such a great resource so close by!
Avatar universal
To me the waiting and seeing makes sense. You probably had the low lying tonsills all your life but it is only just recently that they started to give you problems. I guess nobody knows why? I don't know what the chances are for this turning better again but from a naive point of view I would guess that it can be worth it to wait and see. Obviously your body could handle it before, so if you are lucky it goes back to the same state. Sometimes when the snowball starts rolling it just grows and grows though. I guess that is when the underlying cause really needs to get fixed. I don't know. But I wish you the best!
620923 tn?1452919248
COMMUNITY LEADER

  Wow really you are from Allentown?...Unfortunately there are no Drs  in the general area I would go to...I tried Philly and LVH and no luck...I went to NYC,,,and so glad I did.

  How close are you to me?
Avatar universal
We live in pottstown so Philly is a
Pretty good option. I was thinking Jeff. There isn't even a neurologist in the area. Oh man! I was hoping with you being so close you would have some one closer.
620923 tn?1452919248
COMMUNITY LEADER

  As I said I went to Philly and it is not the best place for Chiari...JMHO

I tried to get a local NL (neurologist) locally too and zip...so my PCP has helped me and he is great! I would not try to find one now.

The thing is you may find a Dr willing to do surgery...BUT if they are not experienced with ALL related conditions this is how you could end up worse post op....these related conditions need to be taken into account when surgery is performed to help prevent issues post op....but if the Dr is not aware of how these other conditions can also affect us they may not take those precautions....
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620923 tn?1452919248
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