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Idiopathic Intracranial Hypertension and feeling werid

Posted , 4 users are following.

pam82301
pam82301

Hi guys. I have been diagnosed with Idiopathic Intracranial Hypertension. On the 10th of September I had a Lumbar Puncture done, during which my pressure was checked (over 30, cant remember the units)and I was given Topamax and was told I will be review by neurologist in 6 weeks. I had to stay in hospital overnight as i had terrible pain while walking and I felt very weak. The pain eased off but is still here if I walk for too long or If i lift something heavy (5 kg is maximum). For past two - three days I been feeling really bad. My head is spinning and I feel weak. Once or twice I almost fainted, my partner had to support me walking and standing. Today I woke up feeling so weak I couldnt get out of bed for about an hour. Now I am slying down on a couch feeling like I am about to faint. I had to get up get something to eat and my head go so dizzy I almost balcked out. I dont want to go back to hospital as I am sure my neurology appoitment will be in next 2-3 weeks but at the same time I am terrified of whats happening. I am on my won at home for most of the time (partner is in college from 9 to 6 daily) and I am scared that if I faint nobody will be here to help if I hurt myself. Also the pins and needles are back in my feet and I get this shocking pain down my left leg and around my hips if i stand on my left leg or sit for too long. Also this tingling feeling in my arms and my face. I dont know what to do? what it out or go back? I was tihnking about seeing my GP tomorrow but I just dont want to make a show of myslef again... I have been in hospital so much they know me so well there! I always get same medical doctor and she hates me! She is always so rude asking questions like -could you not wait for out patiens - or -is it really that bad?- or -you sure you not hypohondriac?- She makes me cry and very uneasy. I just dont know what to do anymore. HELP

0 likes, 6 replies

6 Replies

  • Misssy2
    Misssy2 pam82301

    Posted

    Your young and need to change GP.....you can't keep going with a Dr that makes you uncomfortable....

    Sounds like something in your brain is off.  My Neurolgist (I have the same symptoms) did an MRI, brain wave, spine MRI.

    There is a Neurological reason for my symptoms and there probably is for you.

    Try to eat 3x a day and drink plenty of fluids up until your appointment.

    • pam82301
      pam82301 Misssy2

      Posted

      Its not my GP that makes me uncomfrotable its the medical doctor in the hospital. I always get the same one. My GP is brilliant. 

      I eat very well as I have Diabetes and i need to watch my diet. I refuse to have an MRI unless I am put to sleep as I am very claustrophobic and even small rooms give me a pannic attacks. I dont know how long till my next appoitment. anything from 2 to 4 weeks. I fainted 3 times today and broke two glasses... i just lost the grip on them

  • Kodiak13
    Kodiak13 pam82301

    Posted

    Hiya.... my son has IIh and has done since he was 3..... I know having IIH causes dizziness... But I would say the pins and needles are down to the medication... My sons pressures have all been above 48hgmm.... He did go into remission but has now started again with headaches and vision loss.. So is having an LP next Tuesday.... 
  • lorraine80169
    lorraine80169 pam82301

    Posted

    Hiya pam..sorry to hear your having a bad time with this.... But at the same time it doesnt help when the medical doctor is rude,if they knew what us IIH sufferers go through it would be different. Hun, I know you have proberly heard it alot but try and take it easy,but if you need to go the hospital then you go to the hospital!! They are there to help. Ive had IIH for over 2 years and believe me I spent alot of time up at the hospital,i was told never to doubt myself if I think I may need medical help with IIH.... Good luck hun and keep us posted on how you get on!!
    • pam82301
      pam82301 lorraine80169

      Posted

      I have been to hospital and it was a mistake. That doctor just put me through he'll there stopping my meds! All the headaches and pains came back.... also they put all sorts of monitors on me and said I have tachycardia so I can't take topamax anymore.... needless to say it was a disaster. Anyways I have a neurology on 27th and hopefully he will help.
    • lorraine80169
      lorraine80169 pam82301

      Posted

      Awwe hun sounds like you have been through alot,good luck for the 27th hunni xx
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