Chiari Online Support Group

Not so common symptoms... do you have?

Here are symptoms I’m having that aren’t typically associated with Chiari. They may not be at all… but I’m curious to know if any of you experience any of these other symptoms as well…

Other symptoms:

  • hand tremors or shakiness. (always said it was "just my nerves)
  • lower back/ SI joint pain. (can barely bend over)
  • heartburn / acid reflux
  • incontinence when sneezing or coughing
  • eye floaters
  • night sweats
  • IBS
  • frequent neck “kinks” or stiff neck
  • Severe cramping in back of legs while asleep (like charlie horses but in both legs at same time)
  • Headache on very top of head
  • Extreme fatigue
  • Insomnia (this stopped and now it’s just the extreme fatigue)
  • heart palputations

**The symptoms I’m having that I’m pretty confident are from chiari But please let me know if I’m wrong:

  • Blurred vision (seems to be worse at night and definitely comes and goes)
  • shoulder/ neck stiffness and pain
  • Foggy mind - mix up words
  • sleep apnea
  • Vertigo
  • odd noises in ears (ringing, swishing, dripping)
    Various kinds of headaches:
  • Severe throbbing headache in back of head
  • overall dull headache
  • Ice pick headaches
  • Sinus headaches
  • Pressure headache

Thanks for any feedback!

1 Like

You have given a large list. So I will try to relate what I suffer with and what has been diagnosed from my cardiologist,neurologist and genetic doctors.
Joint pain, Charlie horse in legs, hip pain, wrist pain TMJ, bleeding disorders, endrometrisios, stitches pulling out of tissue, tennis elbow, neck pain, degenerative disc disease, is Ehlers Danlos related.
Fatigue, over heating, Ibs, heart palpitations, inconsinence, fainting, blurry vision, flu like feeling, cardiologist ordered tilt table test, passed out after 8 minutes in a 4 hour test.
I hope you feel better, just know all of your list may be related to other conditions we also suffer with.

1 Like

You know, I’ve been told that these aren’t related to Chiari as well, but I didn’t start struggling with these until I started struggling with Chiari. I have problems with:

  • hand tremors or shakiness - usually when it’s time to take my meds or I am late taking them.
  • heartburn / acid reflux
  • night sweats
  • IBS
  • frequent neck “kinks” or stiff neck
  • Severe cramping in back of legs while asleep (like charlie horses but in both legs at same time) and restless legs
  • Headache on very top of head
  • Extreme fatigue
  • Insomnia (this stopped and now it’s just the extreme fatigue)
    •Foggy mind - mix up words
    •sleep apnea
    •Vertigo
    •odd noises in ears (ringing, swishing, dripping)
    Various kinds of headaches:
    •Severe throbbing headache in back of head
    •overall dull headache
    •Ice pick headaches
    •Sinus headaches
    •Pressure headache

I do know that the headache issues are from Chiari as well as sleep apnea can be a Chiari issue. Do you take Topamax? Topamax causes issues with fogginess as well. I take it and have trouble with it but aslo have had trouble before the Topamax. I also eat much less than I used to and have been losing weight. Chiari can also cause heart palps…I’ve read that many times. This is such a complex issue. It’s crazy!

1 Like

Hi there
I’m new here and am in the early stages of my Chiari diagnosis. I have nearly all the symptoms your listed. Also I was wondering if other people get frequently sick - sinus infections, bronchitis, colds. I seem to have them more weeks of the year than not.

I’m having similar problems so not to worry, there are many in same boat as you. It can be scary at times because you don’t know if you’re coming or going! Just saw a second neurosurgeon last week and he says that I need to go for surgery. He says he is surprised that I am still working and doing the things I am still doing because if the MRI results. Everything is pointing at the fact I shouldn’t be doing what I am doing. He had said that if I wait much longer I may not be able to do what I am doing because of the spinal fluid blockage has already started. Wishing you the best and no you are not crazy; you are normal and special like the rest of struggling with this.

1 Like

Wow!!! I can’t believe that we share all those symptoms!! Thank you so much for your reply. I started giving up hope that this ALL is related to chiari and that I must have something else as well. No, the only thing I’m currently talking is magnesium (prescribed by neurologist to help with headaches but take because they help my si joint pain). However, I never went back to neurologist after my initial consultation. My MRI came back with diagnosis of chiari and referred to neurologist… where she wanted a bunch more tests that I can’t afford. Another MRI ( this time down the spine) that’s $1200 up front. Ouch. I’m hoping getting on s different insurance plan this January so I can get some help but sometimes I wonder… why bother if there’s no cure? Decompression surgery once things get real bad I guess- maybe I’ll be in a better financial state then? Anyway… thanks again. I’m sorry you have to deal with all this crap too! You

2 Likes

I also take magnesium and occasionally I take zinc, B complex, helps energy, multi vitamins, fish oil, I found more relief with herbes and vitamins then I have the prescribed medications.

Tazz you mentioned spinal fluid blockage, what are the symptoms of that?

I have all but three of your symptoms. I was diagnosed with vertebral basilar insufficiency (caused by the Chiari) and its symptoms are similar to Chiari, so no way of knowing which is causing what.

From what I understand it means that the way the skull is malformed and how the tonsil of the brain is sitting in my skull, it’s not allowing the fluid to go through my spine. Many of us has a syrinx in the spine because of this, now with this said when I get the surgery done, my neurosurgeon had said that the syrinx will decrease in size and allow the fluid run more freely.

I have a lot of yr 2nd cluster of symptoms, the vertigo has been infrequent over the years but lately more prominent—the vision stuff is frustrating

Symptoms varies with each person and even sometimes even with the days. You’ll have your ups and downs, it can frustrating at times but you must have patience and find a happy zone if you can. There are times I can’t get off the couch or bed but then there are other times where I don’t know when to stop. Because if I stop I know I won’t be able to get up again. Wishing you the best!!

1 Like

I am right there with you. I have Type 1 and I have a lot of the same symptoms you are having. The second Neuro surgeon I went to said that my symptoms didn’t line up with my condition, but I beg to differ with him on that. Anyway you are not alone.

Hey I have had cranial decompression and Im awaiting results next week I think Mine has come back.But one thing that I just had to tell you in regards to your symptom list is that the night sweats happen to me all the time its annoying really its like an overwhelming hot flush Im 23 and it got so bad that I thought I was going through menopause.Its worse cause its hot! In australia and where I live its humid and the humidity make my head swell up.But yes I believe the sweats are real.

I am not a doctor or in the medical field. Being a sufferer myself I think all your symptoms are from the chiari. I have read online n done lots of research on this n some doctors feel incontinence and bowel problems are from this. I can honestly say since having the shunt placed I have spasms in my rectum, pain in my sides and stomach that feels like I am going to die but no one knows why. So I don’t think enough is known about all the things this can cause. My personal opinion. I have the pain in top of my head also.

I suffer from most of those except the IBS AND insomnia. At least I dont think its insomnia. I’m just a restless sleeper. I dont get nightsweats either. But everything else is pretty spot on. When I have to pee… I have to go right then or… whoops!!! But i have also had 4kids. It really sucks. My eyedoctor took pics of my eyes andsaid my optic nerve is also pretty large, indicating I may develop glaucoma later on but idk if that’s chiari symptom or not… my eyesight has gotten worse my prescription glasses arent a working anymore and idk if it’s worth my time getting a new set of glasses at this point. Obviously when i drive I dont go anywhere alone anymore… (so much for me time) but yes your symptoms seem to be on track with chiari.

disclaimer I’m not a doctor and I’m not giving actual medical advice LOL

:laughing: It’s OK, Plottwist: that’s clearly your own opinion, and you are not trying to sound like an authority. Relax!

Seenie from ModSupport

I have vertigo, and balance problems. Frequent neck kinks and neck stiffness. I have acid reflux but this is due to hiatal hernia. My heart palpitations was said to be due to mitral valve prolapse. I don’t often get severe cramping in my legs, but I have stiffness in my legs, more than just being inflexible. I can sit on my bed and rest for 10 minutes and when I get up again I’m really stiff. I have headaches in the back of my head. Night sweats, yes, but I think it’s because I bundle up at night. I don’t have the other symptoms.
Kristin