My Brain Screams

manipulated detail photo of saguaro catus by wendy holcombe

For over a year now I’ve been hit with one thing after another. Last Fall my bipolar medication stopped working and I basically had a psychotic break with the mania/rage going way out of control and battling a lot of medication side effects before we finally got that under control. Then I had a severe UTI that caused hydronephrosis in both kidneys, I had a cyst removed from my scalp that got horribly infected and I had a reaction to the antibiotics. In April the severe intractable migraine started and has continually gotten worse; over the last couple of months I’ve been having an escalation of cluster headaches, at least one a week. and now my antidepressants have stopped working. All this while we have been looking for a house, in the worse housing market I have ever seen, and we have to move from our rental by the end of November.

It is any wonder my brain has decided to check out?

In 2016 I started having seizures during an extremely stressful time of my life. It was determined they were psychogenic non-epileptic seizures. You can read more about that in this post: Psychogenic Non-Epileptic Seizures What Are They? Since that time I haven’t had many, only a few and only in times of great pain (like when I was in the ER for my migraine) or extreme stress (like after a vertigo attack that happened during the mania). Lately they have been coming regularly. It is increasing my pain levels dramatically. When I have a seizure it looks like a grand mal seizure. It starts with my right hand twitching, then the arm goes, and the whole right side twitches and curves back, my head draws back, my muscles are all tight and spasming. It is very painful, and my neck and shoulder on the right side still hurt so much. I feel tingly on that side, and I just feel so off. During the seizure I am mostly aware, but I can’t do anything. Sometimes I’m not as aware, sometimes I’m very confused when it’s over. I always cry when it’s over. I feel so exposed, vulnerable, scared, and unsafe.

Just a year ago I was doing so much better I bought a car. I was driving, cooking, shopping, painting, swimming…. I don’t understand what happened. I’m not asking “Why me?” or anything like that, I’m simply confused. I know we made a major move, but I was doing pretty good for the first few months we were here, so I really don’t think it was the stress of moving. But I guess one stress could possibly have snow balled into a bigger stress… into a bigger stress… into more illness…but who really knows. All this could have happened no matter what. It could have happened independently, but it just happened to happen one right after another I suppose.

Where does it leave me now?

Migraines – I’m still starting Aimovig on the 28th for my migraines, but I won’t know if it’s working for 3 months. I just finished a round of steroids hoping to get a break from the pain, it did lower the pain level, but they made me so sick I couldn’t enjoy it. (Oh boy was I sick, Meniere’s and steroids do not mesh well together, at least not with me). I may go to the pain clinic to get injections in my neck, I haven’t decided about that yet. Just a little scared about that one. Oh, the Migranal nasal spray is working as a rescue medication, thankfully. It doesn’t completely take it away, but it comes close, so I am having a little bit of relief twice a week. More than I was getting, but as I said, it doesn’t take it all away, it takes it from a 10 to a 7 or maybe, if I’m lucky a 6. Ah….a 6…but that is a rarity.

Mental Health – I started a new antidepressant, Trintellix, on Tuesday. I’m to try it for 2 weeks and if it doesn’t work we’re going to try Ketamine. I’ve tried everything else. This should be interesting. I’m working with both my psychiatrist and my psychologist about my seizures. I need to get my pain and stress under control. One step at a time. Just one moment at a time.

Home life – We’ll be moving into one of Stuart’s dad’s houses the beginning of November. The house Stuart grew up in. We aren’t sure if we’ll continue to look for a house to buy, or if we’ll stay there and renovate his house. The house is a bit further out than we planned to live, so we’re going to live there for a while to see how we like it. Kinda cool that we can do that. I’ve just been freaking out a little about not having a home, and needing to settle down. I’ve been feeling so lost and temporary ever since we moved from our house, six years ago, but it’s been so much worse since we moved here. When we moved here we basically got rid of everything. We have 2 chairs in our living room, and one is very uncomfortable. We have no dining room furniture. Our home is very sparse. We did not plan on renting for this long. It’s just so hard on me. This has just been so hard. I need stability. I NEED IT.

Right now I feel very alone, vulnerable, and scared. The only place I feel safe is in my husband’s arms. He literally saves my life every day. I told him that if it wasn’t for him I wouldn’t be here any more. So much pain, both physically and mentally…it’s just so much. And my amazing husband told me that he loves me so much, he never wants to lose me, but it also makes him feel guilty because he knows how much I’m suffering. I don’t know how I ended up with such an amazing man. He’ll never know how much it helps me to know he hears me.

I have so much, a wonderful husband, a roof over my head, nice clothes, good food, access to quality health care, support…. and yet I’m so unhappy. I’m so very sad. It hurts so much. My thoughts are consumed with pain. I find no enjoyment in anything. A friend posted a question on her blog asking if you found out you were going to die what would you regret not doing more of….and I could not answer that question. First I thought, not helping others more, getting more involved…. But then I tried to think of something I enjoyed that I would wish I had done more of, and I had nothing. There are things I used to love to do, but now…..not so much. My art…nope. Cooking…too much work. Taking pictures…can’t see it. I can think of nothing. All I do is sit and color by number. And that’s not for enjoyment, it’s to take my mind off of the pain…the migraine, the chronic daily headache, the back pain, the neck pain, the hip pain, the bladder pain, the pelvic pain…so much pain every day.

life is suffering. life is pain. life is ever changing. life is impermanence.

14 thoughts on “My Brain Screams

  1. Zia Dot

    Wendy – always nice to get your emails – I’m so sorry to hear about all of your medical issues- my oldest granddaughter Madilyn (Scott’s daughter) has had 2 grand mal seizure – this started about 2 years ago. Every time she has one they increase her medication- she just got her drivers license but can not drive because of this – she is so mad over this but she also understand the safety of it.
    Any I’m glad your moving back to the family house – I love that house and would live in it in a heartbeat- so with you moving there does this mean that John will be moving there also? Anyway thank you for your update- always Zia Dot

    Liked by 1 person

    1. Hello Zia Dot 😊
      I hate to hear Madilyn has that issue, I’m glad she understands. It has to be very difficult for a young lady.
      I may be able to drive again, but I won’t unless I’m very safe with it.
      If we stay at Kit Carson and make it ours then yes, Dad will eventually move there also. He is caretaking Margaret’s house right now.
      John doesn’t know so much about my mental health stuff, could you keep that quiet for me please. I don’t hide it, but I don’t talk about it like I do here.
      Love and miss you. Always…wendy

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  2. You really have had such an incredibly rough, shitty time of things. It’s hard to look back, even just a year, and say ‘how did this happen?’ I do that too, seeing that things can go even more down hill so quickly and you don’t know how or why. We just have to hold on to the hope that it’s swings and roundabouts, and eventually we’ll be on the upturn back to somewhere a little better than where we are now. It’s such a shame about the steroids if they lower the pain level a bit; were they oral tablets or injections? Not sure whether injections may be more tolerable or not with, I know sometimes a different format can have different outcomes. Fingers crossed for the Aimovig and also the new antidepressants. Can’t say I’d come across Trintellix before.

    As for the house issue, I think it’s a good option for new to say in Stuart’s dad’s place, even if it’s not ideal. It could just be a temporary respite because trying to house hunt and move is such a heap of stress on top of what you’re already dealing with. Hopefully things can level out a little, you can take a breather while you’re staying there, then you can figure out what to do and get some stability in your life.

    I wish I could do something to help or make you feel better. I’m so sad thinking how alone and vulnerable you feel, but you’re stronger than you think because you’ve already got this far and you haven’t given up, and you won’t give up. You’ve got that fighting spirit, even if it’s quiet at times. Take comfort in your hubby, and know that you have a host of readers (like meeee!) who love you to bits and care about you. Sending lots of hugs your way, hang in there  ♥ ♥ ♥ ♥
    Caz xxxx

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    1. Hi Caz. How are you feeling? How’s the recovery going? Thinking of you.

      The steroids were oral dexamethasone, she said that was best for migraines. I really shouldn’t take steroids since I’ve had avascular necrosis in my hip, but desperation…🙄 Trintellix is fairly new, and it’s pretty much both an antidepressant and an antipsychotic. 😳 I’m praying I don’t get akathesia again. It’s supposed to have a low chance of it, but you know every antipsychotic has given it to me.

      I’m really hoping that once we get in the family home we will decide it’s the place for us. I do really like it, it’s just far out, and needs work.

      You are a dear. Don’t worry I’m not going anywhere. Even if I wish I didn’t exist. Too many people keep me tethered here. Love you my dear. 💕💕💕💕 wendy. xoxo

      Liked by 1 person

  3. You have been through so much and, even though we were along for the journey, to see it in writing is mind boggling. We look at you and see such strength but we also see the effects it has on you and Stuart. There is no quick fix for the fear and vulnerability. I guess that just comes with the territory and we have to deal with it the best we can in those moments. But, it is something that I think we all wish could be easily treated.

    I’m so happy and grateful and thankful you are still here and that you have Stuart with you. Lots of love to you both. ❤

    Liked by 2 people

  4. Oh Wendy I’m so so sorry to hear your pain – physical, emotional, mental – scream through your post.
    There is no cure, only hope.
    Maybe scribble, scrawl and scream through your art media?- don’t try to make “art” just express feelings – make the invisible visible. It’s not for sharing just for you.
    Here’s hoping the new medications help, even in some small way.
    sending love,
    judy

    Liked by 1 person

  5. Oh Wen. I don’t know what to say. I’m so glad you have Stuart to comfort you and support you. I can’t imagine feeling so overwhelmed and in pain all the time. I would sit with you and hug you if I could. I love you sweets! ❤

    Liked by 1 person

    1. Oh my friend, I wish you could too. I’d love to get hugs from you and just spend some time together. I’m very lucky I have Stuart, but it does get lonely here. Funny, when the pain is less I’m not really lonely when I’m alone.
      I love you too pet. 💕💕

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