I’ve been a bit quiet on here again recently, writers block would be the wrong word. It’s more like I’m actually really struggling and I haven’t been sure how to express it to anyone, even on here.

My pain levels are still worse since my stimulator was turned on a few weeks ago, my 2nd extra headache is still raging and I’ve resigned myself to the fact that I really don’t think my brain likes what is happening to it. I feel completely and utterly devastated and I really do not know what to do anymore. I was hesitant to call my neurologists team because I didn’t want them to think that I haven’t tried hard enough, that I’m just giving up. When really I’m in agony, I obviously wanted this to help more than anyone and I’m heartbroken that it has been a complete disaster and I’m worried I am now going to be stuck worse. I did however call my team and spoke to one of my nurses, telling her it was worse again and how I wished they would take the stimulator out. She asked if I had told my neuro that and I said not yet but I would be telling him when I see him in 2 weeks time. She said she would talk to him this week and said she would call me with what he says, so hopefully I will hear something tomorrow.

I’m really struggling with the failure of this treatment which was a last resort and the complete and utter heartbreak it is causing me. The overwhelming fear of spending the rest of my life in agony, the sadness I feel that I will never be able to move forward with my life, that all I will ever be is sick and in pain. And I honestly don’t know how to let myself feel the grief that I know is there.

I’m really at a loss of what to do and how I could even hope to move forward from here because I really don’t think it’s possible.


10 thoughts on “Heartbroken.

  1. I am so sorry for what you are dealing with and I can’t begin to imagine what you are feeling physically and mentally.

    My 14 year old daughter was diagnosed with NDPH and POTs a year and a half ago. We have seen only a bit of improvement with the drug Topamax as it makes the headache move around her head as opposed to staying in one place. It sometimes makes the pain level less when she firsts wakes up but the pain increases as soon as she moves. We are working on improving the POTs symptoms hoping the headache pain will be more manageable as well. Problem is, she feels so weak, uncomfortable, confused( side effect of Topramax) tired, anxious, depressed that it’s hard to get up and fight through the symptoms. I know the only way for her to have any type of normalcy in life, I have to keep her moving so that she can train her brain to fight back. Everyday is a struggle and I have to be so understanding which I forget to do at times. And I feel awful about that.

    You have been fighting your pain for 7 years I believe. What strong person you must be.

    I’ve been following your blog for awhile now and wanted you to know that I’m so sorry things haven’t worked the way you had hoped. Don’t hesitate to push your doctors until they understand how desperate you are for relief. If they can’t help, then keep yourself going by searching for someone who will. Please hang in and keep doing the small things that give you comfort while you keep researching for doctors and answers.

    My dad told me a story today, which I’ll probably tell wrong :). A Donkey fell into a well and the farmers tried and tried to get him out but couldn’t. Finally they decided to give up and fill the well with dirt. As they threw dirt on top of the the donkey he shook it off his back. As the dirt began to fill the well he continued to shake it off and climb on top of the dirt. Until eventually he was able to reach the top and free himself.

    Hang in there as best as you can and have faith that something will come along to make you feel hopeful again.


    • Hi Amy, thanks for commenting.
      I’m sorry your daughter is suffering from this too, I was 15 when mine started so not much older than her. I also have POTS too but am mainly stable. If you’d like to talk more about my experience with POTS and what helped me I’d be happy to chat more, so shoot me an email if you want iamtheneverendingheadache@gmail.com I know how hard it is dealing with it all. I’m sure you are trying your best to be there for your daughter and I’m sure she understands that too, it’s hard to watch someone you love suffer so much.
      Thank you for reading my blog and I hope it helps in some way. And thanks for the story it made me smile 🙂

  2. I’m so sad to read this 😦 Please don’t give up hope though. The stimulator obviously isn’t work in with your particular issue but if they take it out at lease the second headache will go away. New technology comes out every day. There’s got to be something out there to help you, even in the future.

    Don’t let them convince you that you haven’t given it enough of a chance. You know your body so well. You knew almost immediately it wasn’t helping….you just didn’t tell the medical team that.

    I’m so sorry. If I could take some of your pain and carry it along with my own, I would. Even if just to give you a break. Xx

  3. Hi, If you stimulator was only turned on two weeks ago you need to give it more time. Your body needs a few months to heal from surgery. It took me 4-5 months to get the programming right on my stimulator and it’s been over 3 1/2 years for me and I still get 80% relief. Be patient. Good luck!

    • It’s been on the majority of the 6 months I’ve had it. It made my pain way worse on tonic stimulation I couldn’t cope and they eventually said my brain couldn’t tolerate that type of stimulation. Then they turned it off for a month for me to recover slightly and it was turned back on 3 weeks ago to burst stimulation and it’s done the same thing. This isn’t an issue of programming this is my brain not tolerating stimulation at all. It’s not meant to make you worse than you were before you had the surgery. It has even created a second headache in the back of my head where pain has never been before.

      • So sorry to hear this but it doesn’t work for everyone. After I wrote my comment I realized I you had it done 6 more moths ago. I love the fact that the one I have you can do a trial before the actual implant. Really a bummer and I hope you find something else that helps. I know this sounds weird but google coffee enemas for migraines. It’s been helping me and I’ve had a daily migraine for 21 years. There are some Facebook groups you can learn from. Coffee Enema group and Bottoms up. Lol! Kinda funny but they are really good for advice and tips. Good luck! I feel for you. So sorry the ONS didn’t help.

  4. Oh my dear, this breaks my heart. I was so hoping the stimulator would be the answer.
    As the doctor I saw at John Hopkins told me, “there’s always hope”
    It may not look like it now, but hopefully you will feel like that again. We never know what will happen in the future.
    My heart goes out to you.

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