Medication

[KSchmo]

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

[KSchmo]

So back to the topamax and the medication aspect of this.  It's not helping at all. I'm titration back down. Selma- in your first post back you mentioned that I should get my csf checked. How does one go about that? I'm going for my other MRIs this week.

Topamax didn't and is not helping my condition. We tried it. It has actually made me worse. My health has declined. My lifestyle has declined. My quality of life has rapidly declined in a month. Are there other medications that others out there have used with success to combat the pressure headaches?

Selma- your dr will they look at my MRI and consult before I drive that far or will any of the Drs consult? I'm still having such a hard time Bc there is no one here. No one that understands this within an hour or so.

Thanks again for everything

[Emme80]

Hello! I would like to address the subject of when surgery is the "answer"(there is no answer, but that's what I'll call it since I cannot come up with another word for it at the moment)... For me, I was dx's in 2005 w/"low lying tonsils". My NL said we would just keep an eye on it & do yearly imaging(CT/MRI & CINE). At the time, migraines were my only real problem, for which I was put on all kinds of meds-from amnitriptyline(sp?) to Prozac.... All kinds of abortive meds too. Over the years, I found that a preventative med. was of no help. Sumatriptan was working as an abortive. All was well-so I thought. As I look back, there were signs that I (physical things happening) wasn't fully recognizing...things I was pushing off to the side/not wanting to admit were causing me to start to fail completely in daily life. And I top of it all, I felt like I was going crazy-for, the things I did mention to my PCP, being sent to all kinds of "ists" (special"ists")...I felt crazy. Even family(my brother, who even to this day says I'm just crazy, said what I have is Meunchausens(sp?)... He said to my mom that if I died during the surgery he didn't care b/c I asked for it...that still weighs heavy on my heart. Note to self: won't cry about that right now!!!!
Point being, I DID feel crazy. Even said yes to a psychiatrist! See a therapist to this day, not b/c I think I AM crazy, but to help w/years of feeling crazy that has left me w/paranoid & sad feelings...it helps to talk to someone, for me). But back to the point...after yrs. of just headaches, and quietly rumbling symptoms, I still didn't consider surgery. My NL did follow up w/ images...which did show descent of tonsils and overcrowding. Still, the CSF flow was ok. Then my job switched ins.'s and I lost that NL. I skipped a couple yrs. of having a NL.  Then, the migraines got worse. My PCP sent me to a new NL (I love her) I was doing Botox and sumatriptan Nasal Spray ( it's my GOLD for a migraine!!!).
So when did surgery seem like a good idea? Well, it was after many new symptoms reared their ugly heads. I had to leave my job of 10 yrs. b/c within the span of about 7months, I went from headaches & what I thought was just the arthritis in my spine to being a person who had to leave my own house & move in w/ my mom-not just b/c I left my job-this was a part of the reason I left my job!- because my neck would "freeze" in pain, where I'd be stuck lying down anywhere from 2hrs. to 8hrs. , I was fainting, face went numb in heft side, other parts of body went numb on left side, tinnitus-on left side....everything seemed to happen in my left side! I couldn't handle direct light (most just artificial light - florescent lights sucked too!), more than 2 sounds&hi felt bombarded...I was having stuttering attacks....my god, I know I'm leaving out more symptoms that were attacking my everyday life!
That is when I decided that the surgery was the "answer"
(Again, it's no "answer"...I guess the word would be option) to give me an opportunity to regain a life that had become basically non-existant.
I don't know if ANY of that was of help. I ALWAYS seem to write too much! Always...I must've skipped the "editing"
classes in college! :/
Anyways, you know your body. You'll know your wall when you hit it. What I can't stress enough is to KNOW your NS. Selma is great w/ such info!!! I personally needed to know my NS the way I know my PCP. And I ended up having that.
Best of luck to you. Again, sry. for writing so much&especially if it was of no help to you.
There's a lot of great people here to help you through your journey!!! <3

[lasel22]

One positive for you is that it seems like your main symptom is headache aggravated by activity.  From what I have heard, headache responds very well to surgery.  Whereas other neurological symptoms sometimes don't.  I also don't live too far from you and Selma.  I am in northwest NJ.  I go to long island to see my doctor who is a chiari specialist and I think I am in good hands.  Looking back I am glad that other neurosurgeons that I visited along the way didn't want to help me, I never got a comfortable feeling with them.  I'm having surgery soon.

I was also like you in that I was very active, worked out, ran, nearly each day of the week.  Since chiari hit over a year ago, I can't even walk a mile each day for exercise or my symptoms will get worse.  It was like I was fine one month, then awful the next.

I was briefly put on Diamox but I reacted very poorly to it.

[KSchmo]

So 2 weeks into the medication and I'm doing ok. I wonder though if it's not making it worse and what is something else I could take for the pain? I feel that ever since I got the DX my health went downhill fast. I am still working. I rest a lot and still am active with my kids, but I have to rest a lot more. I have to take more breaks I feel I need other opinions. Selma is there a list of doctor in the southwest pa area that are recommended at all?  Is this the point where I say surgery is preferred over medication? Or pain meds over topamax? Help

[challenger2011]

Topamax is what I was on for migraines. I will never take that pill again  its debilitating.  memory loss, cant find words to talk, hair loss(I lost a lot of my hair, paper thin)the only thing good about that pill you do lose some weight.  but its not worth the side affects.  you will see, but hopefully it will not be like that for you.  look it up and read the reviews.  couldn't find one good one.  good luck!!!

[selmaS]

  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....

[KSchmo]

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.

[selmaS]

  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?

[Ball123]

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!

[KSchmo]

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!

[selmaS]

  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.

[KSchmo]

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!

[kwalker0004]

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.

[KerriC1]

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

[selmaS]

  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.

[KSchmo]

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.

[selmaS]

  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