Migraine Sufferer in need of a little help and hope!

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Hi all,

I'm a 24 yr old female who's been having migraines since I was about 16, although wrongly diagnosed as tension headaches, they were finally correctly diagnosed 2 years ago. I have a strong family history of migraine and my sister has now progressed to chronic migraine, as I think, have I.

I started out getting migraines episodically every 6 months or so for maybe a day. Over the past year, this increased to once every 3 months for maybe 3 days or so, then to every 3 weeks for a week and I would say, I'm getting migraines for a good 15-20 days at a time with very little respite. Most are with an aura (I look and sound drunk half the time) I get incredibly cold, hypersensitive to smells and sometimes get olfactory hallucinations. I've also noticed one of my pupils increasing in size too. I get shooting pains in the left side of my head.

Despite how horrific all this is, what upsets me most is the fact I feel like I zombie most of the time. I struggle to find even th simplest of words. I feel exhausted half the time and all of this is getting me down incredibly, especially since I'm in my final year of a Medicine degree. I feel like someone with Alzheimer's for the majority of the time and just not myself and from half the posts on the internet, it seems this will be my life for the foreseeable future.

The GP has put me on Topamax 50mg twice daily, which helped a bit at first, but then the effects seemed to wear off a bit and also Zolmig for acute attacks although this didn't seem too effective at all.

Although I'm nearly a doctor myself, I feel a bit lost with the whole thing and don't know where to turn next. I know they get worse with lack of sleep but I'm finding it hard to identify anything else which makes them better or worse and I just don't know what else to do. Normally I'm such a cheery person but the whole thing is getting me down; I'm a young person with my life ahead of me and all I see is if this is what I have to suffer every day I'll be fairly miserable! I've trawled the internet and all I can see is chronic sufferers who seem depressed, fed up and leading half lives.

If anyone has any advice or any experience I'd greatly welcome it!

Thanks so much smile

Amy xx

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5 Replies

  • Posted

    Hi Amy

    I suspect most of your zombie symptoms and hallucinations are down the the topamax. I tried that for a month and nearly drove off the road on a dry sunny day. I also blame it for kidney stones and 2 years of kidney pain and enduring a minor op to check out my kidney! It also gave me severe nose bleeds and that was on half a sprinkle twice a day. I suggest you read the info leaflet and if your new symptoms match the reported side effects wean yourself off the topamax - you may find a lower dose controls the migraine with bearable side effects. There are much more benign prophylactic meds out there. Check Migrane Trust website and the US WebMD site for herbal/vitamins and go back to your gp armed with research.

    Take care

    Helen xx

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  • Posted

    Hi Amy

    My migraines started when I was in my second year at university and I am 53 years old now. Over the last 33 years I've had some rotten periods of time but also some periods of time when life was normal although at the moment I'm having migraines on a daily basis and, like you, am on Topamax 50 mg twice a day.

    I'm not sure about Zolmig but it sounds as if it might be the same as Zolmist but in tablet form rather than a nasal spray. If this is the case, my neurologist has just come back from a conference on triptans and he said that the latest research showed that Rizact was the most effective triptan for acute attacks. I have been using Rizact rather than Zolmist for the last 2 weeks and have found it much more effective at stopping a migraine in its tracks once it has begun.

    When did you start feeling like a Zombie? It is probably the Topamax which makes you forget words and have difficulty with concentration. I know two other people who have had real zombie problems on Topamax.

    Have you tried exercise? One of my ex-Topamax zombie friends has started running again and feels much better.

    Amy, you said you are in your last year at university so you are bound to be suffering from stress - and Medicine is particularly tough! I found that I was much better after I graduated for a number of years so hang on in there. If Zolmig is not working, go back to your GP and ask (nicely) if you can try Rizact.

    Best wishes.

    Trudy

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  • Posted

    Hi amy

    My migraines also started at Uni (now 47) ut I triggered mine with a sensitisation to organic solvents. Even now the faintest whiff of paint or glue triggers a "normal" migraine, but encephalitis and now menopause have made them even worse and chonic.

    Try keeping a thorough diary, you never know what new triggers you are exposed to at uni: inlcude foods, alcohol, cheese, caffeine, dried fruits as well as chemicals and other stressors. i found that exposure to solvents triggered a headache giving me insomnia and during sleepness nights I ground my teeth making the whole thing a ever ending circle.

    I think Rizact is also known as Rizatriptan or trade name Maxalt. My neuro also thinks its the best one but Zolmitriptan or Zomig works better for me. Just remember more than 4 a month can lead to more migraines from overuse!

    As pain relief I find Indometacin works best (there is a whole suite of Indometacin responsive migraines including hemi-crania continua which I suspect I have) alongside Buccastem for the nausea symptoms. Worth investigating??

    best wishes

    Helen xx

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  • Posted

    Hi again,

    I felt my concentration was poor before I started the Topamax.one of the reasons I started on the preventative route. I know it's one of the side effects but almost can't be sure if it's better or worse! I know migraines can affect concentration too and when the Topamax were working I got s month where I actually felt myself again but now I'm almost back to square one.

    To be honest I love my degree Trudy but am getting stressed at the moment that my performance is suffering add a result of all this!

    Helen - terrible that yours got worse and i hope you have some relief from them now. Thanks so much for the advice. Will def try the diary and trying rizact. Indomethacin is a good idea too as I'm not fond of taking analgesics but not much seems to work!

    Anyway thanks so much. Fingers crossed!

    Amy xx

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  • Posted

    Hi Amy

    I get chronic migraines and haven't found a preventative that suits me yet but I am still trying. One of the first things I tried was Topamax/Topirimate but it didn't really help my migraines much. I did get a severe brain fog type feeling where I found it was really hard to focus and react to things. I came off the topamax and since then I have tried Gabapentin, Nortriptyline, Propranalol and now I am trying Metoprolol. I did find the Propranalol helped the migraines severity but I was still getting them most days and the side effects for me (Nightmares, broken sleep) were not really something I could tolerate long term.

    I have had botox once and that didn't seem to make a difference. I am having my second set of botox injections soon so maybe that will help. I took Zomig as an abortive and now Sumatriptan and they always helped me. I can't take them every day though so I am still looking for a preventative that helps me with the migraines and that I can tolerate. I am trying a beta blocker called Metoprolol at the moment but it makes my pulse go really low and I feel very dizzy all the time.

    It does feel like there is no end to the trial and error of these preventative drugs but I guess all we can do is keep trying things and one day we hope to find something with tolerable side effects that stops the migraines. Keep going though you are still young and even if it takes a while to find something that works for you it will be worth it in the end. I am the same as you where I have had the migraines since being a teenager. I am 34 now but noted a sharp increase in severity and frequency when I was about 23. It is awful to have to battle your way through things every day but keep going and I hope you will find something that works for you soon.

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