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Black Hole

My partner’s name is Madeleine, she has been confined to bed for four years with ME/CFS. Her life was on hold and to make matters worse she developed a severe migraine two weeks ago, so severe that she can’t stand the sight of any light, so now she is in perpetual darkness. She is taking prescribed medication which has finally helped with the pain but she needs some guidance of how to get out of this eternal blackness.

If anyone has gone through this she would really appreciate their suggestions and support. She is at the end of her tether.

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  • Londonmum
    3 months ago

    After many years of suffering from migraines my son took gluten and dairy out of his diet and within three months his migraines disappeared. You need to consider what your gut is telling you. Something in your diet is causing your illness. Do an elimination diet (for at least 6 weeks) and find out what is causing your gut issues. Also B complex deficiency will cause photophobia. Vitamin and mineral deficiencies are common with gluten sensitivity and coeliac disease, as are migraines.

  • savedbygrace
    3 months ago

    Hey there! This is my first comment I’ve ever posted. I need to say I’m sorry your partner is suffering
    like she is.
    My story mirrors in many ways your partners. Including the gut issues.
    I’ll just put a few things out there that have helped a little for me, but of course everyone’s different.
    All lights are soft white, 40 watt or below w something draped over the lamps, sunglasses, sunglasses, sunglasses. Good ones. The cheap ones have wavy lines in the lenses that hurt your eyes. Ice pack across the eyes.
    Every single thing fragrance free…
    Chromium picolinate supplement. If deficient, there’s more light sensitivity. Of course w IBS or other autoimmune gut disorders, vitamins are deficient…. mine were for years and worsened my cfs and migraines.
    Probiotics w 16+strains per dose w acacia fiber morning and evening. It will take some time to notice the difference, but it does help. The other helpful substance, hydrolyzed collagen. It lines and soothes the lining of the gut.
    Persist. Don’t give up. Every breath is precious even if it’s painful. Try different remedies until something clicks. I’m 32 yrs into these battles and still having to spend weeks in bed, missing holidays and special events and most of “normal” life in general.
    It’s tough on the patient and to the ones closest to them. I’m thankful for my husband as Im sure your partner is thankful for your understanding and support. At the end of the day, that means more than any advice or online support.
    I apologize if this commentary is a little scattered. I’m recovering f a migraine as I write this.
    I hope and pray you find some answers. Be blessed.

  • Sleepless123 author
    3 months ago

    Hi savedbygrace..

    Many thanks for your detailed information, and if that was your first post, well congrats, your a natural. CFS/ME was once described to me as the modern unseen illness, few people will ever understand the frustration of chronic fatigue, in most cases blood pressure, blood sugar and

    organ efficiency are usually
    normal and your absolutely right about probiotic supplements for promoting the friendly gut bacteria. My honest thoughts are unless you have walked in the shoes of fellow sufferers you will never grasp the full concept and sheer frustration of this unpredictable illness.

    One day man will walk on Mars.. One day doctors will cure CFS.
    One day..

  • glassmind
    3 months ago

    Photophobia and coping techniques are widely discussed here. If you do a search you can find much info including anctedotes from others with this symptom.

    Everyone has different things that helps.

    Personally, I am photosensitive all the time. Even between migraine attacks, I keep my home lighting levels low, in the yellow spectrum, and always with bulbs obscured. I have many sunglasses stashed in bags and cars (my spouse’s car, too) in case I misplace or forget my favorite pair which helps me the most with natural and artificial lighting.

    Others wear hats and visors.

    Do ask her doctor for recommendations and check,if phoyosensitivity is a side effect of any of her medications as it can be with some.

    I wish you both the best. Hugs

  • Allyson.Ellis moderator
    3 months ago

    Hello Sleepless123, thank you for reaching out. I hear how much your partner is enduring with several different chronic illnesses. It is awful when migraine decides to join in as well. Madeleine is not alone craving and needing total dark space when in the throws of migraine symptoms. Many in the community find light exacerbates their migraine symptoms and need a dark space to retreat. I thought this article might be of interest to you: Has she (or you on her behalf) discussed these symptoms with her doctor? We cannot offer specific medical advice over the internet (for safety reasons) but her doctor may have some suggestions to help her manage. Please keep us posted on how she is doing. I hear how draining this experience is for you as well. Know this community is here to offer support to both of you whenever you need a friendly ear. Wishing you a gentle day. ~Allyson ( team)

  • Sleepless123 author
    3 months ago

    Hi Allyson,

    Thank you very much for your kind words and support. We have already consulted our GP and he has recommended a healing process which we will follow as soon as Madeleine regains her strength. Fortunately the migraines have finally eased but she is still suffering with Photophobia and fatigue. Under normal conditions these symptoms are to be expected and
    would gradually ease after a few days but since she is suffering with ME/CFS her system is compromised and this too is an uphill struggle. For those of you that are familiar with this illness
    you may be aware of the term, “Leaky gut” (increased intestinal permeability) and the “gut” is often referred to as the second brain, so a gluten, sugar and dairy
    free diet is essential to promote the friendly bacteria help repair the gut walls which have now become leaky and allow various toxins
    and small food particles into the wrong places eventually promoting extreme fatigue.

    If anyone reading this can suggest or offer any help or suggestions, especially if they are fellow sufferers themselves we would be very happy to listen.

    Many thanks and kind regards

    Ian and Madeleine.

  • Allyson.Ellis moderator
    3 months ago

    Hi Ian and Madeleine,

    Thank you for checking back in! I’m glad Madeleine’s migraine symptoms have finally eased a bit. I wanted to suggest that in order to gain additional responses, if you haven’t as yet, you may want to post your question on our sister-site: as well! You may gain insight from others with IBS by querying that community! Wishing you a gentle night. ~Allyson ( team)

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