A day in the life 

  • An average day in the life of me; an IIH and Chronic Migraine sufferer: 

I suffer from the IIH, chronic migraine, hypothyroidism, asthma and anxiety. I’m in constant pain and have severe mobility issues, meaning I am likely to fall or pass out. I’m mainly bed bound, but have walkers to get around the house and a wheelchair on the rare days I do get out of the house. IIH symptoms are very similar to migraine symptoms, it can be difficult to determine which is which on a daily basis.

I wake up at about 7:45 most days, usually when my boys or husband bring me breakfast. I do wake up in pain but the severity has changed slightly since my operation in June 2017. I am more likely to wake in pain, if I have slipped down from my 5 pillow cocoon that props me up as I sleep. I sleep like this to reduce the amount of csf fluid that pools in the brain. I take my morning meds with breakfast as some taste disgusting. Often I fall straight back to sleep when everyone leaves the house.

If I don’t immediately fall back to sleep, I catch up on social media, for both my  Twitter Mission Migraine role and the multiple pages I have for my Jewellery business. I spend this time networking, scheduling posts for the day or week or even add listings to my stores. I can get carried away with learning new things but I try and switch off by 10am to go back to sleep. I brush my teeth and do my physio exercises if I’m well enough and the spend 30 minutes meditating before I fall asleep.

I have a few PAs (personal assistant or carer) and a cleaner that come every weekday. Nats who cleans twice a week, arrives at 11am and then my PA arrives around 12pm. At around this time they (or Joel at the weekend) bring me up a nice cup of herbal tea and check I’m awake and ok. If I’m well enough, my PA gets my clothes out and we catch up whilst she sorts the washing out. They check I get to the bathroom ok for a shower or wash and then they either make the bed(s), make me a smoothie or sort something for dinner. I sometimes need help dressing and Joel has to help me wash my hair in the shower at the weekends and sometimes in the week if I’m well enough. Tina is here on a Monday and she has the job of sorting my pill boxes and repeat prescriptions.  They make sure I am wearing my lifeline support alarm button and give me my lunch (a smoothie and a yoghurt) and fresh water.

I may see a friend for a brief visit after lunch. I can only manage to short bursts of conversation; maybe 30-45 minutes before the pain increases. My close friends can see when it’s time to go, by the colour of my skin! If I’m having an ok day, I make cards or jewellery for my Paprika Jewellery & Accessories  business. I might catch up on TV shows or films or I’ll carry out my role as chief Pinner for the official Conscious Crafties Pinterest boards; I love organising and helping. If it’s a better day, I may manage to get downstairs in my stairlift and maybe even get to my craft room to make bigger and messier items, I love the rare occasions where I am still downstairs when my boys get home or when I spend time with them at the weekend.

If I’m upstairs when they get home, the boys come upstairs and tell me about their day. I love this time with them and feel so lucky that we have such a strong bond that they do this by choice. Joel normally gets home by about 5:30-6 and cooks tea, adding to or using anything that my PA has prepared. In the early evening, I usually have the first signs that my symptoms are worsening. I take antiemetic (anti-sickness medication, so I can try to still eat. At bedtime, I love it when Joel joins me to watch TV, unless he’s out. Just before I go to sleep, I write my daily positives in my journal.  

Medication
People often ask about my treatment plan, so here it is if you are interested:

Preventatives: Pregabilin 2x a day and amitriptyline at night

Daily painkillers: Naproxen 3 x a day, diazepam 3x a day, morphine sulphate 2x a day, oramorph as needed up to 5x a day

Other medication: lansaprazole 1x a day to protect stomach, levothyroxine 1x a day for over active thyroid, Vitamin D and multivitamin. 

Taken as needed: Metachlopramide for nausea, stemetil 5mg for dizziness,and stronger diazepam for really bad nights. 

 

Complimentary remedies: I use a migracap (a hat with gel pads sewn in so you can freeze it and get the ice everywhere you need it-it’s amazing). I use disposable ice packs for hospitals and holidays;  I use essential oils most days; I use in an oil diffuser which is so effective. My favourite oils are lavender, clary sage and jasmine for headaches. I also use frankincense and rosemary frequently for peace and calm.

 I use ‘gig’ earplugs when I go out of the house to help with my sound sensitivities. As they don’t block the sound completely, I don’t get dizzy. I use sea bands in the car (as well as the antiemetic meds) to help with the nausea. I wear my sunglasses everywhere, even if it’s raining or inside due to photophobia. My bedroom is always in dim light. I find that meditation can reduce my pain, as well as calming me.

I listen to calm music, if my pulsatille tinnitus is loud or someone is mowing the lawn somewhere in our street! I eat a healthy diet, with nutrient enriched smoothies every day. I’ve spent many years trying to find food triggers. MSG and caffiene seem to be the only ones. I’ve cut out wheat and dairy for a long time but it didn’t help. I do still have a low intake of both. I hope that this helps some of you. No two people have the same triggers for either IIH or Migraine. It’s a case of trial and error and I’ve tried most. I’m happy to answer questions regarding anything written here, although I am only basing this on my experiences, so please follow your doctor’s advice.

 

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10 thoughts on “A day in the life 

  1. Wow, you are struggling with so much and with the migraines I can relate. I have chronic migraines, and only take preventative topiramate, verapamil, and candesartan. I’ve tried so many pain meds, imitrex, can’t remember the others, but now I find Relpax very effective – if caught in time. The meds are so expensive, and luckily my insurance covers most of it, but only allows 12 tabs per month. I have to spread them out, and that’s difficult when I reach the end of the month.

    I believe mine are due to the weather as I live in Canada.

    Take care and I’m so happy I found your blog, yet sad that you are living in pain. Thanks for following my blog.

    Like

    1. Thank you for your lovely message, I am glad you found my blog too!
      The system here is very different with regards to the meds and luckily I can pre-pay £10.50 a month and get all my prescription meds for that. So I have tried so many of them and not had to pay out extra, although, initially I was paying for each prescription. None of the migraine abortives work for me unfortunately but I am on the preventatives like you.
      The weather definitely affects me with both the IH and the migraines although I think the migraines are mainly hormonal and triggered by certain foods and food additives.
      Please keep in touch and keep strong.

      Liked by 1 person

  2. Hey chickadee! I stumbled on to your blog through some happenstance of google search. I too have IH and migraines, but I’m lucky my doctor and I were able to find a medicine combination that put my IH in “remission”. I can’t say I know what you are going through because mine never progressed enough to need assistance walking. I do hope you know you aren’t alone in so many things I can barely read still, I need my nightly ice packs on my face, constantly feeling like someone is moving the ground under you… I do have to ask, what kind of earplugs do you use… because I need some! Anyway, I hope you are having more good days than not and that you find ways to lessen the symptoms. My thoughts are with you, Kat.

    Liked by 1 person

    1. Hi Kat,
      What a lovely message, I’m so glad you found my page. I’m afraid I do actually have more worse days now. I’m actually on constant morphine now but I have my first Op booked in 3 weeks as this is how they are going to treat my IH rather than with meds as mine is caused by restricted venous outflow so they are going to try and open the veins to increase the blood flow out of my brain. My earplugs are the type that they use at gigs. So if you search for gig earplugs then you will get great earplugs. They are so good because you can hear everyone normally but it takes out all the background and bass noise! Good luck with your search x

      Like

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