Constant migraine for almost a week

Posted , 7 users are following.

Long story short. 24 yr old female. I am under a neurologist. I had a lumber puncture 4 years ago to release some pressure. In February at a review I was prescribed topiramate 25mg. So far so good. Probably mid August book them came back with revenge but not my normal kind of migraine pain. It eases after a week. I have had this one for for 5 days. I have lost the hearing in one ear. One eye is Larry than the other and is all red and blood shot. The pain in on the top on my head ( crown on my head) and behind my eyes and all down the right side of my face. I get weird tingling in my right arm and I get a weird sensation in my hand. All i am doing is sleeping and I'm waking up with a worse migraine. I am not taking pain relief due to other Health conditions. My GP won't do anything. Can anyone please suggest something I can do or has anyone experienced these kind of migraines?

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  • Posted

    I am so sorry to hear about your pain. Mine is very similar, minus the blood shot eyes. .. (partial hearing loss as a young child, but probably unrelated. ) i was diagnosed with hemiplegic migraines & it effects one side, tingling sensation. ..stroke like symptoms & also resembles ms. I took topiramate for a while, it didn't prevent my more constant episodes. I was on 2000 mg of Depakote for 2 years in the beginning, but side effects were severe.

    I would suggest that you take Xtra vitamin D, B, & magnesium, & find what foods trigger your migraines. God bless you, & may you find relief soon.

    • Posted

      I've not heard of depakote before. I have been keeping a food diary for the past 6 months as I am under a gastroenterologist anyway. I have to be careful with extra vitamins as I have vitamin injections every 3 months as I am deficient and my gastro meds can sometimes react to certain meds.

  • Posted

    Yes I get this. It is associated with auto immune disorder. Anyone with these type of migraines should consider this as a cause.

    You also mention a lumbar puncture to relieve pressure....was that raised intercranial pressure? You should really be reviewed to see whether you have an auto immune related illness.

    Do you have any other health problems....gastro intestinal issues or joint pain....any flushing in the face or torso or anything like that? Any heart palpitations or chest pain?

    • Posted

      Interesting Margaret, I get chest pain but its put down to HB and stress which also bring on migraine. X
    • Posted

      Hi. I am under gastroenterologist for investigations. They thought crohns but we are still not sure. They are saying IBS-c for now. I have pains in my legs especially if I walk far distances. I am on propanolol for my heart rate/pulse as it was hitting 130. I am not too sure what the pressure was as it was so long ago but it wasn't significantly high just a tad but up. I am b12 difficent. A walking disaster as some people like to say as they don't understand

    • Posted

      Chest pain is all part of HM, I have noticed I get this ever time I have an attack.  Its not stress
    • Posted

      I have had three heart attacks but my heart is supposedly healthy. How is auto immune checked and what is the treatment?
    • Posted

      The only chest pain I get goes towards my armpit and my GP always says it's stress or part of an anxiety attack

    • Posted

      Well they are all symptoms of auto immune disease. And I think HM is quite often diagnosed incorrectly when you have underlying auto immune disorder. It took me a long time to be correctly diagnosed. I have a form of vasculitis and it caused this. Did you have your red eye checked out? Is it still red and painful?
    • Posted

      Its definitely not stress its to due with this type of migraine
    • Posted

      Babs I get chest pain all the time. I think that way too often these things are being explained as HM but they aren't. Do you have other health conditions?

    • Posted

      The dr didn't check me out just looked at me but looked inside my ears for infection as they are really sore. My eyes more itchy than anything. It it's called down a bit now. Especially with the light off. They mentioned to me a long time ago about auto immune as I have raised LFTs when I don't drink, all my bloods keep coming back high then low then high. It no cause is ever found for why my blood count keeps going crazy. No one follows it up. I have been under gastro for 16 months and still waiting for treatment and a diagnoses. I get admitted at least once a month and no one helps me.

    • Posted

      I dont know about auto immune checks, Margeret mentioned that.  All I know is I have been diagnosed with hemiplegic migraine but my neurologist in London
    • Posted

      Yes it is always explained as stress! I had this for years.

      Anyone with these symptoms need to adk for their inflammatory markers to be checked to see if they are raised. I went around the houses.....gastro neurologist this that the other. Finally someone tied all the symptoms together. I have vasculitis and that causes migraine, fatigue, sinus problems, chest pain for several reasons, breathlessness, muscle pain. With treatment I currently have zero symptoms.

    • Posted

      You need to get an understanding GP who will fight for you to get somewhere

       

    • Posted

      I've been diagnosed with Chronic Migraine with Aura. I have acquired Long Qt syndrome triggered by migraine meds hence the reason I cant have meds. Also have had three heart attacks. High blood pressure Anxiety and Depression.

    • Posted

      yes I got sore ears and eyes were sensitive to light. Do you ever get tinnitus I got that too but not everyone gets that 
    • Posted

      Yes ringing in the ears? High pitches sound? All the time with a migraine but right now I can't hear much from it. And pericarditis sounds about right it's always on the left never on the right only last about 10 seconds and goe. Could that be linked in to possible gallstones maybe? Another one to add to the list of things they think I have. I said it was 3 weeks of heart burn the nurse disagreed said it can't be heart burn if it is going into my back

    • Posted

      Not sure about gallstones but think maybe pericarditis is about right. It is horrible. Had it too. It is all part of the auto immune baggage I'm afraid. 

    • Posted

      Babs I also had the most dreadful aura. It's intense and really distressing. 

    • Posted

      Just Googled Auto Immune and Vascuitis if I was diagnosed I couldn't get meds as they prescribe steroids.

    • Posted

      Would that show up on a chest X-ray? I though it was just down to that time of the month and having breast stabbing pains or something like that or part of an anxiety attack I have ignored it for months or thinking every morning it was a pulled muscle
    • Posted

      yes I get the liver function thing. My main specialist is in Addenbrookes in Cambridge in the renal unit there by a specialist in vasculitis. Although I am London based I travel there for care because, like you, I took so long to get diagnosed and even when I did I got awful treatment at a London hospital so I changed and went there. Best thing I ever did. The problem with this is it is hard to diagnose. My bloods were unremarkable and inflammation does not show up on scans or mri's. A lot of us are diagnosed on history and evidence in bloods. There is no definite blood tests only clues in the bloods. Youre bloods are classic auto immune results. 

    • Posted

      steroids are not the only treatment available. I have never used steroids. 
    • Posted

      No Amy, interestingly most of this doesn't. The problem is that inflammation does not show up on scans. I am not 100 pc sure about pericarditis but it is also tricky to diagnose. I had a heart murmur with it....or what sounded like heart murmur. But that doesn't always happen either. 

    • Posted

      Because of the Long Qt a lot of meds are no go as have the potential of stopping my heart. Everything has to be checked by cardiologist to see if worth the risk.
    • Posted

      Nightmare isn't it. I was going to change hospitals too as my one are well...shocking but Liverpool could be worse too. Don't know about where you are but up here they are all under 'pressure' and it's all going down hill and fast compared to the treatment we use to receive. I was going to be stubborn and sit in the hospital all day today until I get answers but I probably wouldn't do I never bothered but now I wish I did I feel rubbish

    • Posted

      also can I ask about your gastro issues....do you have swollen tummy, a lot of gas and pain in your lower abdomen?
    • Posted

      hi yes I see what you mean but I take an immunosuppressant and interferon for treatment. I have never taken steroids. There are so many treatments for auto immune disease now. Steroids are only one. I wouldn't use them personally because long term use scares me. 

    • Posted

      I get lower right pain all the time they always think it's my appendix I've seen surgeons 4 times this year with suspected appendicitis and it never has been it's always been because I am constipated and I have trouble opening my bowels on my own as part of my bowel is too slow. As for gas no I'm not very gassy lately. Tummy is sore but not very swollen just tender

    • Posted

      yes it's a bit tricky to get good treatment but once diagnosed it's easier. 

    • Posted

      I will see what they say. It's gone on long enough not only is it having s large effect on me but I am pretty sure I am about to get the sack for my absence

    • Posted

      I know what you mean. I had to leave my previous job because of it. It's horrific. But there can be an answer. Have a look at the vasculitis specialist at the Royal Liverpool. They may be able to give you some answers. x

    • Posted

      yes I get the lower abdo pain. Can be excruciating at times. But you know what Amy, all of this I am talking about is in the past for me now. I currently have great treatment and been free of everything....no migraine no gastro no joint pain no chest pain....for 3 years. It took til my 40s to be diagnosed but once I was it was great. My current treatment is so good. 
    • Posted

      That's amazing. At least you finally found the treatment. Hopefully I will find some answered and the right course of treatment that will help and not be passed from pillar to post for much longer

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