Complex Migraine Attack for over a month

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Anyone know a way to get Doctors to take your migraine seriously? I was diagnosed with Complex Migraine last year. I’ve been having the same my migraine attack for over a month. Doctors just tell me to rake my Sumatriptan and come back in a few weeks if it doesn’t approve. 

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  • Posted

    Hello,

    I had to put a complain against the hospital so they could see my migraines, were not just simple pains in my head.

    Finally after explaining and telling them I still got the attacks , they told me it is Hemiplegic migraine with Aura and I need to see a neurologist.

    You need to speak out cause it's a rare disease and they don't know how to handle it at times.

    Hope u feel better and don't give up...

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    • Posted

      I mentioned that I thought it was Hemiplegic Migraine. But he said he hadn’t heard of it, so I must have got it wrong. 
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    • Posted

      Hello good evening hun,

      No they don't know it cause it's rare and the symthoms are like a stroke, but it's the massive migraine headache that cause all your brain and body to act with a Hemiplegic Migraines with aura.

      Goggle it and study your symptoms dear , that's how I got them to listen to me finally...

      Good luck 🤗

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    • Posted

      Yes I agree they are ignorant when treating this dease seriously cause it's very plain and simple if they really listen to your symptoms and do some research, but we are not alone..

      There are many cases like this 😲🤕🤢 u just need to find the right doctor that will listen to u..

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  • Posted

    No I’m sorry it’s a life of ups & downs. I suffered since I was a teen, now I’m 52. Change Doctors, document everything, remind them that there are dangerous side effects & limits to drugs like sumatriptan.  Nag nag nag. Ask to be sent to a true migraine specialist. A neuro psychiatrist or wellness dr can help at least help you deal with the idiots out there. I’ve had to many nights crying out of frustration. My neurologist is wonderful but even he is referring me to another specialist, Botox helped for a while but the side effects are becoming worse. If your Doctor is male, cry, they can’t handle it. I’ve had a migraine stroke, lost peripheral vision in one eye, my migraines are complex, the pain is almost the least of my worries. Most migraine suffers know more than the specialist. If someone asks me my triggers one more time I’m going to scream. You are not alone, I’m sorry 

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    • Posted

      I’ve been to a nurologist. Theh said there was nothing else they could do as I’ve tried all preventative mediciens with no effect. I currently visit my GP at least 3 times a month and have been now told to stop ‘time wasting.’  I’ve changed GPs, I’ve been to A&E but no one is that interested. 

      The only thing they offer me is CBT. But after 50 sessions, there is still no change. 

      I asked to be referred to a headache clinic, unfortunately they told me to wait another 6 months and if it’s still a problem then to go back. 

      I just feel like I’m going around in circles. 

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    • Posted

      Which country do you live in? I found avoiding processed food helpful. Organic food helps. The wellness NP did a lot of strange blood work and it was enlightening. I’m really on the vitamin kick, but I’m still going to yet another headache clinic, going through it again scares me.  But I feel your frustration.  It takes away so much of your life. Migraine society’s in Canada, USA, and Europe all state that seeing specialists in migraines is vital. I’ve found taking my husband to appointments has achieved greater results (or an advocate).  If you can change Drs then do so. File a complaint with college of physicians or equivalent. Get all your records, from Dr to outside tests etc.  I was fortunate to get a referral to my current neurologist after visiting an ER 2 days in a row, & being a nurse myself helped. I’m so sorry this is happening to you. I’ve lost 2 dream job because of migraines. You are getting a raw deal. Asking for records scares them. Filing complaints (although hard) scares them. I’d file against your Dr & the Hospital ERs. Keep the pressure up on a referral to a headache clinic, although they can be frustrating too. Ask for a referral to counseling or a psychiatrist (it seems strange but then they see you are desperate). And they have to do the referral so why not just refer you to the headache clinic.  Manipulating is the way to get results

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    • Posted

      Thank you Karen!

      please look into KETO diet.  They have done studies with sufferers with migraine and going on KETO diet has much reduced or stopped migraines.  No processed foods, organic as much as possible, etc.  google KETO diet and migraines. What we eat can make a big difference.

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    • Posted

      Hello

      I feel the same way it's so sad and frustrating when we know our bodies and we are in so much pain.😷🤕

      Mine was a Woman doctor but she didn't listen to me, but the Man doctor actually did test and was more concerned about getting me the right doctors, which it has to be a neurologist that can help u deal with ur pains better..

      For me some foods trigger my attacks and specially if I worried or stress it's worse..

      Hope u feel better soon hun🤕 your not alone...

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    • Posted

      I’m a vegetarian, have been for 34 years. The KETO diet is almost impossible. But I do find a dramatic change with organic, non processed fresh food. 
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  • Posted

    I have struggled for over 8 years which people who have read my threads on here will know. I have been passed from pillar to post.

    The best thing I can suggest is to ask for a second opinion. I did exactly the same. I saw a consultant in Newcastle who I was very grateful to as she helped with a few underlying problems which can contribute to my chronic migraine but after they were diagnosed and treated, and the pain really wasn't easing she didn't know what to do with me and it was as if we were going backwards so I did my own homework and after evidencing my reasoning behind it i asked my GP to refer me to another neurologist in Liverpool who specialises in headache and migrainous conditions, after a consultation with her and a clear explanation as to the difference of what happens to chronic migraine patients in their brains in comparison to a standard headache/migraine I felt like she could see through my face into my brain like some kind of human MRI she was amazing ( obviously she had all my previous history lol )

    Anyway on the 20tg of April I go for my first course of cranial Botox, the first of a 12 month course to see if that makes a difference.

    I have tried every medication under the sun. Beware gp's trying to fob you off with painkiller type medication as these can also induce headache.

    The first thing I was told when I first saw a neurologist 3 years ago was if you take painkillers atop (I didn't anyway) as overuse can basically cause headache/migraine.

    I hope this helps a bit. Ask ask ask!!

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    • Posted

      Hello,

      I was seen here in the UK I live in Flixton with my husband, do you know of a good neurologist around here??

      I done all my research too and write everything down when I get my simpthoms or attacks...

      I been out of the hospital for like a week and half and resting a lot..

      Thank u 🤕

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    • Posted

      Hello there

      Im afraid I don't sad ..... I traveled 5 hours round trip for the first Neurologist and 6 hours for the second one as im in Cumbria, but I'd go further if I needed to. I was actually sourcing London before I found details for The Walton Centre in Liverpool. Google and see what you think. My GP referred me there as I fit the criteria ( basically I'd tried every oral medication without much use). They offer many other sorts of treatment and therapies but obviously dependant on your particular condition but I would definitely recommend a bit of research on them.

      The migrainetrust.org are really good at detailing new treatments and trials too so I often keep an eye on there.

      Hope this helps.

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    • Posted

      Hello hun🤔,

      Thank u so much I will look into it , yes it's frustrating been in so much pain and not getting the right medications for us...

      I will be flying next Monday and I feel stress knowing I may get a trigger to my Hemiplegic Migraines with aura.. but I know worring and stress don't help at all..

      I will look into the neurologist here in the UK , thank u hun.

      Hope u feel 🐝 better soon...

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