Hemiplegic migraines making me afraid to have sex, make me anxious about life what should I do?

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Hello, I don't usually post of these forms but I'm going crazy and I don't know who to talk to or what to do.

I've gotten hemiplegic migraines for the past 7 years. I've never been "properly" diagnosed but I'm 100% positive that's what it is.

Anyway, when they happen I get the Aura starting on my left side, I can't see, then once that stops my left hand goes totally numb. The numbness crawls up my arm, into my face, and down my throat before subsiding. This can also be followed by confusion and slurring my speech, being unable to communicate. I also get very bad panic attacks. I specifically get them really bad when I get migraines or when I'm thinking about them and really it's making my life a living hell. Anyway, in the summer they happen more, and this summer I've gotten like 5 in less than 2 months, more than ever. At least 3 of them happened after sexual activity, including masturbating. And in fact besides those times I am now terrified that I'll get one every time I have sex or masturbate. It's making me super stressed out and depressed. This is ruining my life right now and I don't know what to do. I'm afraid to have sex with my boyfriend so much I wanna cry because I don't know what to do.should I just keep trying and keep getting them? Please help

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6 Replies

  • Posted

    Hi Diana,

    Ok, I will give you my best advice as I also get HM.

    I have had many of these attacks and following the first one I got an MRI scan to rule out any obvious cause.  So this is my first bit of advice.

    Now as this type of migraine is rare, it also mimics a stroke and until you have been checked out, you or anybody else doesnt know that its not a stroke.  I am not trying to scare you Diana, I am just trying to be practical.

    What I can say with all certainty though is try to lead as normal as life as you can when you dont have any attack.  But the reason you are so stressed is you have not had the MRI yet to rule out anything serious.

    This is my best piece of advice for you, but do keep in touch and let us know how you get on, whatever is the cause, we are here to support each other.  We have all been through hell and back again with some form of headache/migraine, so trust me we know how it is.

    Good luck Diana, try to stay calm and enjoy normal life, when your physical symptoms allow as this will help you if it is HM.  Best wishes and take care.  Keep in touch

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  • Posted

    Hi Diana,

    As a former neuro nurse, I agree with personal20. I'm slightly worried that you say you've never been "properly" diagnosed. Does that mean you haven't had a full neurological exam complete with an MRI, or that you've never seen a doctor? It might be that a neurologist would decide that you don't need an MRI but only they can make that call.

    That being said, I can't help thinking that if you've been having these events for seven years there's unlikely to be very much wrong. Certainly not a brain tumour, for example, as they kill within a very short time, so you wouldn't have survived seven years!

    I think the most likely diagnosis is indeed hemiplegic migraine, but you really must get a full investigation to rule out any other possible causes. In addition, there are medications you can take for this, but they're prescription-only and you'd need to have a "proper" diagnosis first.

    I'd advise you to go back to your doctor and start the process of full investigation of your symptoms.

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    • Posted

      Lily,

      I do have a question for you since you worked in that field ....I suffer from bad anxiety when it comes to health stuff.

      Been having headaches for a few weeks, along with some slight pressure, teeth hurting. My dr thinks it was most likely sinuses. Of course I automatically assume the worse and think brain tumor.

      I did just go and get an MRI on Thursday (it's now Sunday). I assume they wouldn't have let me leave or called me immediately that night or next day if it was a brain tumor. I know I just need to relax but my mind takes over.

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    • Posted

      Yes, you're perfectly right - if they'd spotted something serious like a tumour or an aneurysm they wouldn't have let you leave.

      I'm guessing you're not in the UK if you managed to get an MRI for symptoms that are clearly those of sinusitis!wink The generalised upper-jaw toothache and sensation of pressure are a dead give-away. I had repeated attacks of sinusitis over a 10-year period - due to an undiagnosed serious dental problem for which I should probably have sued my dentist - so I know plenty about the symptoms at first hand. Another one, which I suspect might spook you if you got it, is a peculiar sensation of a large, heavy rock moving inside your head if you bend your head forward. Because of the lack of sensory nerves inside your head, this sensation presents as being in the back of your head, and feels as if your entire brain is moving, whereas the movement is actually taking place just behind your face and only involves a small amount of infected matter.

      Are you getting some treatment for your health anxiety? CBT is the best, if you can find the right therapist. If health anxiety goes untreated not only can it wreck your life but it can impact on your immune system, leaving you open to very real diseases.

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    • Posted

      Thank you for the reassurance- I figured they wouldn't have let me leave if something was wrong but I tend to let my mind take over. I def think it's sinuses but i always worry. And yes, I'm in U.S. so pretty easy to get MRI

      I know I need to stop

      Worrying and def plan on talking to someone. The stress and worry is not worth it for me or my family.

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  • Posted

    I know exactly how you feel.HM are frightening by it self since it does mimics a stroke . So word of caution always get it checked out.

    I think proper diagnosis is critical with HM. As far as sex goes the tension and releases of endorphins can bring about stress over your body resulting in pain . I have found that relaxation exercises after sex or masturbation can be helpful. I'd sure wouldn't like to mess up a pleasurable experience .

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