Hemiplegic Migraine update-

Update - Feeling very low, more so then usual. Been to my gp today with pain at the back of my head and i have been put on Diazepam 3 times a day. Not allowed to work as i cant drive on this medicine and i just feel very useless and hopeless. I dont know what to do with myself as my work are supportive but i cant help but feel like everyone is talking about me. One part of me is saying to rest my body and the other half is saying man up and get back to work and get on with it :( hate that people view me differently now i have this illness.

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  • Awe sticks95. What you're feeling is normal. Migraines just come in and take over your life. You have no control over them.

    Wee all feel like that now and then. I was the same and recently left my job. Kept thinking "i can do this, I'll just live on painkillers" but in all honesty there is no way wee can do that, would end up with rebound headache after rebound headache.

    You have a support group right here!!


  • That's so so kind, it really is so difficult and its nice to know people who understand ๐Ÿ’ž

  • We're here 24/7 you vent as much as you need.

    Hang in there ๐Ÿ˜˜ hopefully your new meds will help .

  • Thank you, same for you! Bit nervous as ive not been on Diazepam before x

  • I've never taken them but my sister has, they made her a bit spaced out but she got good sleeps.

    Have you thought about herbal meds?

    Their qualified just as much as docs and can make you something to help.๐Ÿ’–

  • No i havnt really looked into anything like that but id be willing to try anything lol x

  • I recently went to a place called Napiers, she made me a cream to rub on areas that hurt, i put it on my temples, neck, shoulders, forehead and right at the nape of my neck ( used the size of a marrowfat pea to cover all they places ) didnt have to take any other tablets, defo works.

    ๐Ÿ’– xx

  • Gosh, Cally! I'd love to know what that pain relieving cream is and how to get it. Never heard of 'Napiers'.

  • Are you in the uk Frodo?

  • Yes, I am.

  • Google Napier Herbalists and see if you have any in your area. My doc recommended i go see them.

  • They are in Scotland, so not my area. They do online shopping though.

    Including a 'Tension Support package' for migraine and sore heads which includes a Capsicum and Ginger cream - is that the one you're using? They also do a 'head blend' tincture which I assume is to be taken orally.

    Thanks Cally. There's a lot of useful info on the site as well: just reading about thyroid issues.

  • Awe Frodo didn't realise they were only Scotland ๐Ÿ˜ข never heard of them till now.

    I honestly don't know whats in the cream, they made it up while i was there, 1 drop of this, 2 drops of that etc. Took 1hr to make me a cream and a tincture for hormone imbalance.

    I reakon it would have a lot of the same in it though. If it's not too expensive i would give it a go.

    It's a useful site got lots of info which I'll be exploring too.

  • I was on diazipam 5 mg 3 times a day when my brother passed away I have been able to come off them. Take care and take it easy rest plenty and just be lazy. Try to do something like reading to get your mind off the pain good luck

  • I don't have a support group but seeing your thoughts on rebound headaches gives me hope

  • Ill have to have a look into more natural things. Thank you ๐Ÿ’— Get fed up of pumping my body with chemicals and it doesn't help with my depression either xx

  • Definitely! ! They treat all conditions. Be well ๐Ÿ˜†

  • I've tried dozens of medications and botox, acupuncture, oxygen and daith piercings to no avail, but I just had a lumbar puncture and my opening pressure was 26 normal is 10-15 .and I'm overjoyed to think if they put a shunt in to lower my spinal/brain fluid pressure it just might take away my migraines which I have daily. I see a surgeon in December.

  • Thank you for your reply LarryDahlka, I have seen a chiropractor, acupuncture, nerve block and tons on medication but nothing is fixing the problem completely. My next avenue is botox so ill have to wait and see! How was the lumbar puncture? Ive heard they are very painful but i would do anything for my migraines to stop! X

  • no pain at all unless you get up and walk too early.

  • Ill bare that in mind! Good luck in december keep me updated because i think its somthing that ill have to have

  • That's brilliant news LarryDahlka. Good luck ๐Ÿ˜†

  • Hi

    So sorry to hear that you are feeling hopeless - I empathise as I experienced (common) migraines for a long time. I have tried most avenues including taking some meds, acupuncture, low carb diet, exercise, osteopathy, faith healing - you name it. Recently I enrolled on the Lightning Process (3 day course) where there were two long-term migraine sufferers (as well as others with ME and CFS). It is a training course enabling you to change stuck thinking (neural pathways) and to flourish. it is very early days for me but I work up with a headache in the night - put the training into practice - and within 10 minutes the headache had gone with no need for medications. I have used the process on other things and it is amazing. Not cheap but if you are at your wits end it may be worth exploring and will empower you to make changes.

  • Hello! I have just found this forum and see you have heamiplegic migraine too! I took ill in 2007 with a suspected stroke and or MIA's. For 9 months I was having daily episodes where I would have excruciating pain in my head and paralysis down my left side. The episodes would last between 2 and 7 hours each so for nearly a year I was unable to leave the house, look after myself or speak. I was finally diagnosed with cronic cluster heamiplegic migraines and given every kind of medication possible. It took a further 6 months before they eased. Now 10 years later I have at least 3 major clusters a year lasting 3 to 24 days and many smaller one of attacks dotted in. It takes at least 72 hours for my speech to return so what usually happens is one migraine will trigger another so its weeks sometimes before I can speak. Recently the clusters have increased in frequency and I am struggling. I have been waiting for months to see the consultant and now have been told that I won't get an appointment until the new year! I find it really sad that people who are suffering have to suffer for months and months before even being able to get help. I also now have temporal artritis possibly caused by the length of the last cluster! I am just wondering if its just being in south devon that means I have to wait so very long or whether this is a problem everywhere? It is nice though to be able to finally find someone else who has the same as me!!! Dont worry about your colleagues, hopefully they will look into it and see that this type of migraine is not anything like the standard migraine. My colleagues were amazing and I was very lucky.

  • I have had migraines for more than 40 years, I do believe I am having rebound headaches which can happen when I have been on zolmitriptan 2.5 for a long time, I have had a scan and there is nothing wrong that could be seen. As Christmas is over I am on my second day with pain in the back of my head without zolmitriptan, I am taking soluible aspring and place a very cold facecloth to the pain area ,I'm giving this a trial for a week to see how I do,the pain in the back of my head is not like an normal migraine. I'll keep you updated, believe me pain in your head is not easy to deal with. All the best

  • Yesterday was my 6th day managing the pain. I woke this morning at 1.30 am and felt my head was going to explode, I had to take zolmitriptan 2.5 and a cup of tea and it cleared up but I was exhausted all day but have no headache since, I am going to ask my gp for referral to neoulist. I think why do they make these tabs for migraines and then when you get prescribed them when they feel you have had enough gp won't give you them. I have had to buy them, they are expensive but I worked all my life in a hospital trust and at 72 years old I don't think I should have to through this pain, life is hard enough and I'm sure there are people have had a worse life than me but believe me I wouldn't want anyone to have the life I've had. Good luck to you all I'll keep you updated

  • Hi Valelady, you could be describing my story . Christmas is a time I dread, and that's such a shame. Like, you, I'm in the process of reducing the number of Zolmitriptan I have been taking., and it's not pleasant. Agree about the GP giving the tablets, then somehow making you feel like you're not helping yourself when you need so many. I try to take no more than 2 a week ( when it's not Xmas etc) and this seems to keep the rebound symptoms down. The only thing that really helps me is to only eat certain foods and in very small amounts, with no snacking, particularly in the evenings. It's more about what I CAN eat rather than what I can't. No alcohol, obviously. I really hope you find what works for you, Valelady. I do feel like you at times. It's hard to live a full life, plus we seem to be surrounded by people who don't understand and make us feel we're to blame. I think we have to be strong, do what we can and try to ignore the people who make us feel bad.

  • Hello,

    Hemiplegic migraine is so debilitating and I experienced the first One 40 yrs ago 6 weeks after the birth of my first son. It was first thought I had suffered a stroke but then was diagnosed as Hemiplegic migraines. Not much helped and I don't react well to strong painkillers (awfully wierd dreams that awaken me) so for me the introduction of Topirimate did help somewhat a few years ago. I had been suffering cluster migraines (up to 4 times a day) and felt so unwell. The Topiramate helped by stopping some of the crippling headaches but not the aura, speech loss, numbness or weakness. The dose did need increasing after a period though and possibly does again now. I'll take anything that helps in any way at all though and this medication has helped so thought I would share. Oddly I suffered a bad time just recently when my Potassium was found to be really low and the supplements I was prescribed co-included with a barrage of migraines. This seems to have settled with the end of the supplements. I also suffer for Hypothyroidism and it is thought there may be a link between the 2 illnesses.

    Wishing Sticks95 and anyone else suffering with this nasty illness as much help as possible in finding something that will help ease your pain. xx

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