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Remission periods

Posted , 5 users are following.

alana17881
alana17881

Hi all, I have a question for anyone who can help me - another one or two lol.

does anyone go through periods of remission? It is crazy but yesterday I did not have my dizziness. I still have nerve tingling at the base of my skull and in my right shoulder blade. It is always there. I am worried that I have a repetitive strain problem in my neck. Otherwise why do I feel so good today but other days I feel terrible. I am so scared of having surgery and it not being the cause. I am having a cine MRI tonight so maybe that will confirm things for me if my csf is blocked or restricted. Helen, I am still stressing! Has anyone's symptoms worsened re dizziness and pressure in public places? Thanks guys for your support and input

0 likes, 13 replies

13 Replies

  • b2wc97455
    b2wc97455 alana17881

    Posted

    Hi, yes, sometime  you hve a good day, you also have a bad days,  i put on daily diary with me on what i do..what I eat, it seems when I eat much antioxydant food , lots ofwatery contents (fruits, soup, no carb, no meat I stopped eating gluten anyay) I am pain less, when i walk 15 minutes slow walk I mean then 20 minutes I feel better as well, Of I don't take a nap I sleep better in a night time...mind you I take no medication anymore since I take supplements and magnesium oil..If I really feel so much (like a drilling in my head i take tramadol or paracetemol0 eventhough that does help..but i feel that omega 3 and grape extract really do the justice for me I drink beet root juice each day as well..., I jus seen my gp again yesterday as my neck and back getting worse..I am still waiting for my op..my gp just wrote another letter to my NS to expedite my op to make it earlier..as I can't put up with this numbness and tinggling, so just be pagtient..keep liaising with your gp..let them know how you feel, be assertive keep telling them..make sure they understand how suffering you are..just remember they see so many patients, you mst make them remember what your condition is..who yo are, why you have to be gtreated differently..dont be scare at them..as they really dont know what chiari is..they have not got time to look at the web..so you need to educate them...they are not specialist..so they will be grateful to you..if you write down everything on how you feel..have you got the date for your op yet?
    • alana17881
      alana17881 b2wc97455

      Posted

      Hi, thanks for your response. No date for OP yet. It will depend on car flow as to whether surgery is required so will wait and see I guess. It is so frustrating and random
  • Linleel
    Linleel alana17881

    Posted

    I do. Somedays I feel great, until I stand up. Other days I am in a fog and when I walk, I'm weaving back and forth and my head is spinning. Somedays I have a bad headache, neckache and can't get comfortable. Can't sleep at night. I have restless leg syndrome in addition to the Chiari and when I try to nap, my legs start jumping. Really annoying. 
  • hayleybell
    hayleybell alana17881

    Posted

    Yes, before my op I could go weeks of feeling fine and then I would think "I shouldn't have this surgery" 

    Then my symptoms would come back with a vengeance! Eventually my symptoms would last longer & I would have shorter periods of being free of symptoms. But, in saying that, everyone is different.

    it is tough making the decision to have the surgery, be sure you are well informed.

    good luck to you

     

    • alana17881
      alana17881 hayleybell

      Posted

      Thanks hayleybell, I am just so concerned of it being something else but then the bad days I know prob not. I don't understand the constant trigger pain in my shoulder blade next to my spine. I guess it is nerves attached into my top cervical vertebrae. I don't really get major headaches but more nerve tingling and pressure at the back of my head. Anyway, will wait for my scan to see the csf flow as I think that will answer my questions. Was yours blocked?
  • hayleybell
    hayleybell alana17881

    Posted

    Yes, mine was blocked, not anymore tho!

    I am much better since my op & so glad I had it done, despite all the worry.

    Do you have a syrinx?

    • alana17881
      alana17881 hayleybell

      Posted

      No, the neuro said there may be slight signs of it but not yet thank goodness. You?
    • hayleybell
      hayleybell alana17881

      Posted

      No syrinx, thank goodness, but make sure you have full spine MRI to be sure.

      neck & shoulder pain is very common for Chiari patients. My pain was all in my head, eyes & I balance difficulties, (until a tanker Lorry drove into the back of my car when I was on my way to my pre-op appointment!!) 

      That messed my neck & shoulder up! 

       

    • alana17881
      alana17881 hayleybell

      Posted

      Did you constantly have headache? I feel horrible in the back of my head but not sure if it is headache? My main concern and problem is dizziness/lightheaded and neck stiffness
  • hayleybell
    hayleybell alana17881

    Posted

    8 years ago I started to have strange dizzy episodes & falling to one side. I also would get pain behind my eyes & headaches. I was then diagnosed with Chiari.

    As the years went by my symptoms would come & go. I was put on different meds which caused there own bunch of problems.

    I was told I had migraine & tension headaches.

    Then my 'pressure' headaches started.....

    They would come in a kind of wave type pain, much like a contraction. Reaching a maximum intensity. I would hold my head as the pain was terrible. I would get dizzy too and have to hold onto something for fear of falling over.  The more of these I had the worse they got.

    Bending down, standing up and laughing were the worst for me. But also coughing, sneezing etc, in the end even yawning would cause them.

    I would also also have a constant standard type headache too at times. Then, I would have calm symptom-free time, bliss, then, they would return! Horrid.

    All gone now though, feeling very fortunate!

    Does that sound similar for you? Everyone seems different to a certain extent.

    • alana17881
      alana17881 hayleybell

      Posted

      Hi Hayley, yes very similar. I continue to get tingling pressure around my scalp and back of my head. When I am at my worst I have to lay down and not move. I continually rub my shoulders and back neck and head when bad. Don't have any issue with sneezing or coughing - well I don't think I do. My symptoms seem to be worse when I really start to move. If I don't go anywhere and stay home with minimal activity I am fine. Crazy bloody condition that is for sure. I will know soon I guess re my csf. Definitely weird feeling like contraction too. Pressure then release sometimes with a warm feeling like a rush. Thanks so much for talking with me - it really does help and I am so pleased you are better. I will let you know hoe I go x
    • hayleybell
      hayleybell alana17881

      Posted

      Bless you, sounds similar, the thing with Chiari is the symptoms are so vast & we are all quite different.....Which hospital are you with?......how long have you been since diagnosed?....always here if u want to pm me, X
  • loopytindraws
    loopytindraws alana17881

    Posted

    Hi Alana ,

    I was diagnosed last year after a serious fall when I broke both arms, I took 2 MR scans but I was diagnosed with an Arnold Chiari Maformation type 2.

    I had nystagmus, balance probems, tinitus and msel spasms, not too many head aches thank god. I had forum magnum decompression surgery last june which helped a lot. Many of my syptoms were reduced and I made a good recovery I was abe to go back to work after 5 months.

    Since Christmas my symptoms have started to come back and I am now also having neck and head pain bugger. I am not sure about remission but I definatley have good and bad days. On a bad day I am very dizzy and ubalanced but on a good day I feel good and my symptoms are very slight.

    Hope this helps.

    I am waiting to heaar from my surgeon to see if this is normal or whether I need firther treatment. My guess is that I will just have to learn how to live with it and hope it does not get much worse.

    Liz

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