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IIH / weird "spaced out" fatigue/ Fed up

Posted , 6 users are following.

Susie_T
Susie_T

I have IIH for about 3 years now.

For the past 3-4 months I have been sleeping very heavily, and am unable to get up in the mornings, and keep falling back into a very deep sleep.

I feel like I'm very spaced out all the time and it concerns me especially when I'm driving.

I've never had a lumber puncture nor been referred to a specialist of any kind, just seen under my GP as and when I make an appointment.

I am normally a very active and fit person, and the whole thing is really getting me down..... I can't run anymore, as I suffer with my head later or the following day, I cant cycle as I get so tired, and am unable to go the distances I used to.  My nose is a constant drip, which the doctor said may be an allergy.... but all day, every day, and no other symptons (no runny or itchy eyes, no sneezing - it just all of a sudden drips).

And the whole memory thing, and spaced out feeling, just really p**ses me off.  My mood swings are eractic and all over the place.   Sitting here now I could just put my head on the table and fall asleep, but I dont feel tired... more exhuasted.

I am having a CT scan tomorrow, but would appreciate any suggestions, as to what to do/say when I go back to my GP next week for the results of the scan.

0 likes, 5 replies

5 Replies

  • sparkleyeyes06
    sparkleyeyes06 Susie_T

    Posted

    Hi Susie T,

    i am am sorry that you are feeling so unwell! It really is horrible!  Can I start by asking how the GP diagnosed IIH with no lumbar puncture?  That seems bizarre to me?  My neurologist explained that is how they diagnose it, it is the only was of checking your pressures?  I would certainly be asking.  Also I had a couple of MRI scans not CT, and they tend to be looking at your arteries in the base of your head and neck, also to rule out anything sinister.  I would also ask, if you haven't already, to have your bloods checked, I myself had this exhausted feeling and was struggling with my day, it turns out I was iron and vitamin d deficient! I hope you get some answers😊

    • Susie_T
      Susie_T sparkleyeyes06

      Posted

      Thank you sparkleyes06

      I was diagnosed from a CT scan or MRI - sorry cant remember which - think it was the coffin one.  Apparently it was the excess fluid around the area of my ears.

      Funny I was originally told I was too stressed and that was the reason for my memory problems.  The stress was from work so I left that employer and saw no improvement, in fact probably deteriorated.

      Had bloods checked a couple of times a few years back but nothing sinister.

      I always have pain in the back of my neck going down into my back.  That along with the thick fuzzy heads are the main symptons.

  • michelle16616
    michelle16616 Susie_T

    Posted

    Hi Susie,

    I am so sorry to hear what you are going through. I can not image how upsetting and frustrating it must be. Recently having my 9 year old daughter diagnosed I can really feel for you. Her peadiatrican has suggested Vitam B10 and Q enzyme, as this has assisted others.

    My daughter has also just started mentioning this space out feeling over the past few days. Thank you for sharing as this has also helped me in putting things together. As she is a child it is not always so easy to see if the symptoms are due to this condition. 

    The peadiatrican has said the next step for her is the lumbar puncture. I really hope you get some answers. Stay strong and best wishes for your appointiment.

    With thanks

  • michelle16616
    michelle16616 Susie_T

    Posted

    My daughter was also diagnosed through an MRI. Her symptoms were constant reoccurring headaches, nausea, neck pain. Now she is menioning dizziness, blocked ears and spacey feeling. 

    Do you mind me asking how old your are? How old were you when this all started?

  • LP1981
    LP1981 Susie_T

    Posted

    I have had IH for 2 1/2 years. I am now 35 years old and will be 36 in October. My story starts a little oddly. I had never dealt with migraines or headaches my entire life. However, when I started having headaches, dizziness and sensitivity to light when I had headaches my doctor attributed it to allergies. Gave me a steroid shot to help curb the allergies and sent me on my way. I then started having a "whooshing sound in my ears and saw an urgent care who also told me this was likely allergies. She suggested I see a massage therapist because I was also having stiff neck and she attributed this to too much stress. So i did see a massage therapist with no results. I resigned myself to taking allergy meds every day and the headaches persisted to the point that florescent lighting would make me dizzy and nauseas. I couldn't handle it. Then, out of the blue my eye sight went all wonky. Everything was wavy looking. I thought I just needed new glasses (in hindsight this should have been an indicator something was wrong). I saw my eye doctor, who took one look in my eyes and said I dint want to alarm you but you have too much spinal fluid on your brain. Your optic nerves are incredibly swollen. There's only two reasons this occurs, IH or a brain tumor. I broke down in tears. She immediately wrote me a rx for diamox and referred me to an opthamologist. He confirmed the diagnosis and the reasons for it and referred me to a neuro, who I couldn't see for over a month. I was scared to death of a brain tumor and i refused to wait for over a month to find out if I had a brain tumor, so I went to the ER a few days later and had a CT scan done and there was no tumor. Praise the Lord.

    I've found that my original neuro cut a lot of corners once I saw my 2nd neuro (I switched due to a change in insurance). My 1st neuro never did a lumbar puncture. I had this done last August under my new neuro. It was done while i was actually taking 2 diamox a day and my pressures were still high. So i now take 3 diamox a day. My neuro now also has me on tizanidine at night and kepora at a low dose because it helps w migraines. I also started magnesium supplements a few months ago.

    I have begged for a year for a referral to an endocrinologist because I am completely convinced that some part of this if not all of it is related to hormones. Yes, i have headachesbthrough out the month but they are exponentially worse during my menstrual cycle. That apt is in Nov.

    While my papilledena is now resolved and i have no long term vision loss, the headaches are relentless. I live with one every day but am functioning normally. Some days the headache wins, but not normally.

    As far as beung as drained as you are, i am convinced that this disease waxes and wanes a bit. Meaning, you will have hills and valleys. I find it helps me significantly to have a routine for the day and stick to it no matter what and even when I don't feel like it exercise for at least 20-30 mins a day, which is usually a brisk walk for me.

    I should also mention, i was over weight when diagnosed. I have lost 50 lbs. I physically feel better but the headaches have not gotten any better since losing the weight.

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