Hi does anyone else experience nausea and fatigue with chiari 1? My consultant dismisses connection

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Hi

I have chiari 1 and suffer extreme fatigue nausea and broken poor sleep

My consultant says these symptoms are not connected to chiari 1

Anyone had there dr agree a connection ?

Do you suffer from these side affects too ?

Thsnks

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10 Replies

  • Posted

    Hi Mandy yes I have no sleep pattern at all I can be up all night with banging head sickly feeling bad cramps and anxiety.

    But seem to e living a busy mum life on 3hrs pn. The medication I'm on doesn't help but my NS at Preston says the symptoms of CM vary from each patient and as this is a rare condition even them them selfs are learning new things all the time. As I say to many doctors, u are taught this condition threw a text book?? So how do I no that the person researching it ha all the correct information?? I mean like I say no 2 ppl with this are the same? So how can doctors be sure what they are taught is all 100% accurate! I often say when they tell me no it's can't be this? And how do I no?? Do u have this condo or?? NO! So believe me when I say what I feel! Sorry for the rant but there is absolutely no help out there for this and it's so annoying as we need answers and support not just looking at like we talking poooop!

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    • Posted

      Thanku for replying . You described how I feel all the time perfectly! At least I don't feel like I m imagining it

      Feels like I m going mad when dr s dismiss the connection between chiari and our symptoms .

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  • Posted

    Hi,

    I totally share your frustration about doctors. I told one about head pressure and they nicely walked me out of the office. There answer was I neede to stop drinking sodas. She also provided a pamphlet to justify my problem.

    My son took me to psychiatrist. I told them what I was experiencing. They said I had some kind of neurosis. Thus I was placed on two prescriptions.

    I could give example after example. The bottom line is believe in yourself. No one knows what you are experiencing.

    M

    Let us hear how you are doing. Btw there is a list that lists your symptoms as Chiari.

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  • Posted

    Here is a list of symptoms I found on the internet. I hope it answers some of your questions.

    Subject: Chiari Brain malformation

    I know all of you hear me complain a lot. The list below verifies my concerns. I wish I could just fix them. Thanks for taking a moment to understand my challenges everyday.

    Below are some of the many

    symptoms suffered by people with Chiari. Keep in mind that every patient is different and these symptoms are not listed in order of frequency or severity:

    1. Headaches (made worse by coughing, sneezing or straining)

    2. Neck Pain

    3. Difficulty Sleeping

    4. Muscle Weakness

    5. Numbness

    6. Unsteady walking

    7. Poor hand coordination

    8. Slurred speech

    9. Blurred vision

    10. Dizziness

    11. Fatigue

    12. Sleep Apnea

    13. Difficulty thinking and concentrating

    14. Shoulder pain

    15. Weakness in hands

    16. Nausea

    17. Shortness of breath

    18. Difficulty Swallowing

    19. Leg weakness

    20. Tinnitus (ringing in the ears)

    21. Memory problems

    22. Abdominal pain

    23. Chest pain

    24. Depression

    25. Anxiety

    26. Arm pain

    27. Hoarse voice

    28. Sensitivity to light

    29. Poor or loss of hearing

    30. Episodes of rapid heart rate

    31. Black out spells

    32. Double vision

    33. Frequent urination

    34. Abnormal gag reflex

    35. Hypertension

    36. Hypotension

    37. Nystagmus (fast, uncontrollable movements of the eyes)

    38. Palpitations (abnormal heart beats)

    39. Vomiting

    40. Visual loss

    41. Earaches

    42. Nosebleeds

    43. Snoring

    44. Thoracic pain

    45. Wake up choking

    46. Curvature of the spine

    47. Abnormal breathing

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    • Posted

      Hi the list you posted describes me on a daily basis !!

      If only my consultant would recognise this😔

      Helps knowing others share the frustration

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  • Posted

    Hello, I have constant headaches (all day long daily) for 6 months already and fatigue..and nausea as well.. and I have one new symthom now, menstrual disorder..now it is late by 10 days..can it be caused by Chiari also? I feel like whole my body is destroying piece by piece..
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    • Posted

      Hi,

      I don't know about the problem with the period. I can tell you that I have stomach pain without any reason according to my doctor. He has done test after test. I don't know your age but menopause can cause all kind of weird changes. To some it up, I just feel bad all over.

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  • Posted

    Yes I have dizziness and nausea along with a long list of other symptoms. I also have Syringohydromylia so some will be related to that. 
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