Symptoms coming and going!

[Frostcurrent]

Hello all. This is my first post here, so bare with me. This is the shortest version of my story I could possibly write but hopefully someone could relate or see a pattern or something... I'm really bad at writing short so here goes...

TL;DR

Got diagnosed with ACM1 in 2005, symptoms disappeared between 2006-2012. Symptoms came back in 2012, had decompression surgery in 4/2013, had a good year but symptoms came back in the end of 2013. Then symptoms went away, but came back again in 3/2014 after just three months. Then I got relief for a few months until they came back yet again but then disappeared for the last 6 months this year (I guess because we flew to Japan and went diving etc). Sadly after 5-6 months free from symptoms, the *SUPRISE, SUPRISE* came back AGAIN just a few weeks ago... Frustrating as hell.

Why are my symptoms coming and going for random periods of time?! (Yeah, nobody knows, right?) I am all alone, the doctors and NS have told me that there is nothing more to be done and that I just have to deal with it. I WILL NOT have this. It's like dying from the inside living with these symptoms. My whole life is lagging and yeah...

The long story:

I'm a 25-year-old guy from Finland. I was diagnosed with ACM1 in late 2005 and since then I had a rough year. Then all my symptoms disappeared for 5 years and I got to all sorts of cool things for example continue my hobbies such as mixed martial arts etc. No dizziness,vertigo,nausea,headaches,memory-issues etc, it's a long list :D

While not having any symptoms, I got really strong and fit but then in 2012 February all the symptoms rushed back suddenly. It's too long a story to tell but basically my life turned upside down and then in 4/2013 I went through the decompression surgery and c1 laminectomy etc.

It took a few months for me to get well from the surgery (I got out from the hospital in less than a week). I started walking and jogging properly for longer distances and then I added weights to my workout routine and tested my limits and all seemed fine. This was in late 2013. I got my hopes up but then the symptoms came back. I dealt with the news since I had been sceptical about the whole "surgery will at least stop / slow the progress of the acm".

So anyway. I knew that this could happen and I gave my body time to rest and then things got a little better. I started my studies in business (I had to do something else than just lag at home on my comp while on sick leave). Everything seemed to be ok. Studying, medium workout, music etc. Good basic life.

I almost felt like a healed person again (I tend to totally forget what it's like to have all the symptoms raging) but then in 4/2014 I got this huge vertigo and dizzy spell and I panicked and just had to lie down for the spinning to settle. I had no other choice but to sleep it over. Next day I was feeling wobbly but better. Then in the end of the week I couldn't get a doctors appointment for that day and next I got a faint and dizzy spell at school so severe that I was taken to hospital. The nausea was so bad because of the dizziness that they gave me ondansetron which helped a little. I was assisted to home and I was scared. They also told me that I have tension in my neck and told me to see a physiotherapist.

The symptoms eased out and then some sort of miracle happened. In June this year (after seeing my PT a couple of times) we wen't to Japan. I don't know if it was the flight or the fact that we were diving but all the symptoms disappeared. They didn't return and I continued on my studies and workout routine. Everything was cool until just a few weeks ago. The symptoms returned but even worse than in March this year.

I got off a train and was struck with severe dizziness and nausea. I almost panicked but pulled myself together. Got home but was feeling sick. Had to pass school. Before Christmas I got a little better but now I have been just lying down in my chair because moving at all makes me feel so sick.

I got angry today and went for a jog in -8 degrees and it felt good. It was hard to run straight but I managed to survive back home. Lifted light weights and came back home. Felt better but now again I feel pretty nauseous and dizzy... *****.

I hope we all have a better New Year free from as many symptoms as possible. Thanks for reading...

[Frostcurrent]

Wow that's like reading text written by myself!!! I too can say that about myself that I'm a darn ok chef too :D. Haven't gained TOO much weight yet, but it's still hard to cope with. I've experienced exactly that kind of things (luckily my headaches are pretty much gone), but the nausea, dizziness, vertigo etc. ruin my life pretty much every time they appear.

[Frostcurrent]

Sorry it took so long for me to get back to you! Thanks for your time and answer. You're right and in a weird kind of way it feels good to know that other ppl have the same feels than me. I'm sorry for you ofc. I just came home from downtown meeting my friend and bam! *dizzy-flare*. Thefriend catched me mid air (it's slippery here right now -15c)

Now I feel just horrible and really wobbly. Would almost like to vomit but that wouldn't help at all. I had these weird sensations of bad balance and vision etc. for at least a month now and recently I started to feel like I would have a flare. I was pretty sure it's gonna happen so I took a risk and tried working out a little (after a pretty long break). I guess that triggered it... I just gotta make sure which thinks are a no no for me.

[Elisaandbucky]

Hello. I read your question and all the responses you received. S_Chaney's point that having good CSF is not the only consideration. My flow has improved since my surgery 5 months ago. However, recently, I have experienced a considerable return of the pain of pressure  in my head. I haven't had te nausea that I had before surgery, which is such a relief, but the pain in my neck has returned and has worsened. If I move my head either up and down or the opposite, I feel some odd sort of grinding/scraping of what feels like bones against other bones. So, I have to think about what else that I may be experiencing - related to pressure, or even to spinal issues concerning the discs. S_ Chaney's comments about additional symptoms being related to pressure seem like that is a key concern for you. I have to agree with caution over weight lifting. I wonder if you lessened your weights if you could avoid the impact that lifting heavy weights would cause. Ask a doctor about the safety of weight lifting. Exercise is the thing that keeps me healthy physically and especially mentally. I was running before I found out about the chiari. Now I have switched the exercise to fast walking, which is much less taxing on my body. I certainly feel compassion for your ongoing persistence with your exercise, but maybe altering your activities would help you to avoid some of your current symptoms.

I hope you find something that can make you feel the positive effects of working out without the stress of high intensity activity.

[S_Chaney]

One thing most people (doctors and patients alike) tend to forget is that chiari is position dependent. There are numerous individuals with chiari who never feel a single symptom, then there is a small group who are subjected to a living hell.

Everyone knows that CSF flow is an important aspect, but what many forget is that the direct pressure causes even more problems. Direct pressure on the tonsils usually translates to direct pressure on the brain stem and this can cause endless problems. One week you feel fine, then for some reason the resting position of the tonsils shifts (weight lifting, exerting, sleeping in wrong position) and the pressure gets applied again so the symptoms spiral out of control for no apparent reason.

Personally, I still have good CSF flow but extensive pressure on the tonsils and brain stem. So I can confirm from first hand experience that non-csf flow related symptoms can be a nightmare (pressure only).

[baccalynnwv]

Hi. I agree. Check out other things like Elhers Danlos - craniocervical instability, and Dysautonomia. EDS can mimic Chiari and just decompression surgery to correct Chiari might fail if you also have craniocervical instability.

My symptoms come and go as well. I just came out of a 3 month horror. I've had about 2.5 weeks of mild symptoms - slight head ache, balance issues and slight nausea.

My symptoms got REALLY bad after a couple years of hard exercise. I started doing Power 90, P90x twice, Insanity, plus jogging 4-6 miles per day. Then my body just started giving out on me. The more I would push, the less I could do. And it wasn't that I was out of breath or pulling muscles or anything. My body just wouldn't do what I wanted. It was moving in slow motion - I couldn't jog in a straight line, I had horrible headaches after exercise, I couldn't stay awake long enough to even get dressed to exercise. I couldn't do my workout programs anymore because I couldn't balance myself. Ughh..... so now I've gained a ton of weight because unfortunately I am a good cook who likes to eat. LOL

I hope you can find a true specialist and get some answers! Don't give up yet!

[selmaS]

  Hi and welcome to the Chiari forum.

Chiari symptoms do cycle and surgery is done to help restore CSF flow and slow progression......that said there are a few different types of decompression that can be done....one is a less invasive procedure where they do not open the dura and unfortunately the benefits are short lived.

What you do can also affect the outcome....plus, you did not mention if ALL related conditions were ruled out....you might have one that is flaring and since the symptoms are similar to Chiari you may be wrong in thinking it is Chiari,,,,

  Find a true Chiari specialist to help you....get a new MRI to see if you have scar tissue that built up or if the decompression needs to be redone.....or if it is a related condition affecting you.

[Munchies2012]

Mine come and go also.. and at the moment im at the they have came stage lol! They just cycle it seems. Its like it dissapears long enough for u to forget u are sick and enjoy life again but as soon as u " forget " completely it all comes rushing back.

It could be something specific triggers your symptom flare ups or it could just be pure random ..
Just by reading your post though i would say lifting weights isnt doing you any good when it comes to symptoms