Hello, I am hoping to find out if others have some of the symptoms I have:
Palpitations
Nausea
Seeing stars when strained
Dizziness from minor activities and posture changes or looking up
Weird skin sensations, heat; tingling; numbness
Muscle weakness and fatigue
Twitches in muscles and full spasms
Having one side affected more than the other
Strange sensations in back
Muscles tightening that affects walking
Difficulty with fine motor, especially in right hand
These come and go and vary in intensity, but there’s something going on daily.
Of course there’s the terrible headaches and vertigo.
Hope your week is well & that if you are having symptoms, that they are the ones that are easier to bare.
I think you have a pretty comprehensive list there. These are the sort of lists I took to the neurosurgeon - I included dates they started & how many times a month I had them.
I think what makes Chiari hard to recognize by both patient & primary care doctor is that these symptoms can be confused with so many other conditions & that they are also different between patients. Even so, these are really similar to my (pre-surgery) symptoms. I also had vomiting - I was a prize vomiter. I would vomit for 72 hours straight every two weeks ( think it was increased inter-cranial pressure caused by CSF blockages pushing on the 'vomit' nerve).
I still have some mild symptoms on occassions. I have to manage my life for increased rest & reduced stress & find I get fewer symptoms. I also gave up riding motorcycles :(
Wishing you the very best. I do hope you find a proactive primary care doctor & good family support :)
I also have many of the same symptoms. I really hate the dizziness and recently the hot flashes that seem to go from my head up. My prays go out to you for a reduction of your symptoms.
I also have a good bit of your symptoms. After a while, you will be able to cope with the symptoms better. I hate the pain, but what I hate the most is the muscle weakness. Before I was diagnosed with Chiari, I was going to physical therapy. The therapist didn’t know why my muscles kept getting weaker despite me exercising. After he found out that I had Chiari, he said it explained the muscle ateophy.
I have to use a power chair sometimes. The doctor said my trouble walking is caused by my syrinx. But most people with chiari do not have to use a power chair.
Good luck. Remember that you are not in this by yourself. We are here.
I have dizziness, especially when looking up and with posture changes (bending over and then getting up). I also have double vision when looking to the left which I think may contribute to the dizziness.
Yup! Had it all before surgery!! Right side worse than left. I still have some headaches and muscle tenderness, but straining headaches are much less severe!
I was just diagnosed and the drs thought I was kidding when I said I get these headaches that feel like the back of my skull is being ripped apart… It’s with position changes… The migraine are the worst… Excuse my typos since my vision has gotten blurry… Best of luck finding relief…
Hi I have many of the same symptoms. Before I was diagnosed in 2011 I realised I had one sided pain from head to feet which no one understood. Even at school I found it hard to write quickly for my exams because my whole right arm and hand was in so much pain. A the moment Im having difficulty walking to places by myself, because my leg muscles tightening and being stiff and I also get the weird skin sensations every time I exert myself. Now I'm visiting a physiotherapist to help with my legs. I hope things get a bit better soon :)
Hi Katie! Thank you for replying. So, you feel the surgery was worth it? I see my NS in June to discuss surgery.
Katie said:
Yup! Had it all before surgery!! Right side worse than left. I still have some headaches and muscle tenderness, but straining headaches are much less severe!
Can I ask what your physiotherapist does? Is it similar to physical therapy?
Thank you!
RedSquirrel90 said:
Hi I have many of the same symptoms. Before I was diagnosed in 2011 I realised I had one sided pain from head to feet which no one understood. Even at school I found it hard to write quickly for my exams because my whole right arm and hand was in so much pain. A the moment Im having difficulty walking to places by myself, because my leg muscles tightening and being stiff and I also get the weird skin sensations every time I exert myself. Now I'm visiting a physiotherapist to help with my legs. I hope things get a bit better soon :)
Thank you for replying. I am wondering if you have seen a optometrist to look at the strain on your optic nerve.
bellas77 said:
I was just diagnosed and the drs thought I was kidding when I said I get these headaches that feel like the back of my skull is being ripped apart.. It's with position changes.. The migraine are the worst.. Excuse my typos since my vision has gotten blurry.. Best of luck finding relief..
quick question. I started having a strange sensation in my face. it is almost like I would have an allergic reaction to something. numbness mostly and it feels like my tongue and right eye are swollen but they are not. is this something new from the chiari or is it something else? I have not changed anything in my diet. I thought that maybe I'm over tired or lack of food but this wont go away..
Yes, I know exactly what you are talking about! My right side is worse. It affects my face, tongue, ear and even goes down my body. However, my face is worse than anything else, but last night I lost all feeling in my right foot. I believe it is the chiari, or more specifically overcrowding and intracraneal hypertension. My symptoms get worse when I am tired, sick or eating poorly.
I have the same symptoms except nausea. Two different NS tried to tell me that these symptoms were not chiari related. I am going to go see a 3rd NS to see what he tells me.