Sometimes I tell myself this is all a dream, that this much pain can’t possibly exist, it just can’t. That maybe I am just having a horrible nightmare and one day I will wake up from. Or that I’ve had a terrible accident and am in a coma and this is my coma dream. I know of course this isn’t the case and really my life is really just one big living nightmare that I wish I would wake up from.

At the minute the pain is so bad I just want to cry, the past few days have been particularly god awful and I just don’t know what to do anymore, because when it comes down to it there is nothing anyone can do to help me. Medicine has failed me, therapy only does so much and when it comes down to it I truly am helpless because no one can take away my pain and nothing eases it. Which makes me feel so angry and miserable.

I’m struggling to be around people, so I’m isolating myself. College is difficult, it’s so hard to sit in a 3 hour lesson and concentrate with the pain that is dominating my mind, not to mention that concentrating makes it worse. I find it difficult to do work at home as well due to the pain being bad, there is so much I need to get done but with the pain being bad the majority of the time at the minute it is proving to be difficult, to say the least. Don’t get me wrong I don’t dislike college, I love to learn, always have done, but it is very hard for me.

I’m going back to see my psychologist on Thursday, maybe that will help me feel a bit better. And then next Wednesday the 26th I’m in London seeing my neurologist for my yearly appointment. Not looking forward to it one bit, don’t know how well I’m going to take the ‘sorry Sian there is nothing I can do’ line for the second time; probably not well at all.

Just can’t cope with everything at the minute, the pain being so bad all the time and the way it makes me feel.


16 thoughts on “Sometimes.

  1. Hello Sian, there has to be hope, you need to believe that. My daughter Ashley, ( you have been talking to her) was going through the same thing and then read that someone else with NDPH started taking magnesium and helped her a lot. Ashley has done same and has showed significant signs of improvement. It hasn’t gone away but the pain is not as severe. It may not work on everyone, but who know, it may help. Anything is worth a try!

    • Hi Mea,
      After 5 years it gets quite hard to hope to be honest. Yeah Ashley said it has really been helping her, I’m so glad she has found something that helps a bit. Unfortunately magnesium didn’t help me when I tried it. But yes anything and everything is worth a try, but for me I have tried pretty much everything out there and unfortunately nothing has helped in the slightest and I am out of options. xx

  2. You are in a very difficult situation in your young life. It is not fair. I would never down play what you are going through. I wish I could take away your pain. I can’t. The only words of support I can offer are to remember to be nice to yourself. Don’t beat yourself up for what you cannot do as this only makes the stress worse which makes the pain worse…make everything worse. Don’t give up!

  3. Sorry to hear that you’re feeling so unhappy at the moment, Sian. Remember to focus on the essentials: sleep, food, exercise, time to relax, and anything else you can’t do without. I’ve had a bad couple of days, and I’m trying to just pare back completely to the essentials so that I don’t feel so overwhelmed. I know that this doesn’t help with the pain at all, and I’m sad that it’s so bad and affecting you so much. Joanna xxxxxxxx

  4. Hi Sian,
    I cannot remember if I have commented on here before. I do not have the NDPH. I do have an intractable migraine from migraines that started to never go away. It made me blind, drooling and unable to move in the beginning for six months…until daily medication made it able for me to at least be able to walk around and have my pain level go from what I call a 5 to a 10 through out my days.
    This has been for over four years now. I cannot take rescue medication because I have multiple types of migraines. Plus now an intractable one. I take preventative daily medications that have only recently in the past year even somewhat helped, because I live in US…and neurologists here were telling me they “treated” migraines, only to find out they really knew not much about them. So, I have fired three over the last three years..went to a nationally known Clinic who were awful to me…and finally found a Headache Specialist. He has done the best so far. The best means being in pain daily, but not laying on the couch every day. I could not go to school. I do not know how you do it. How I function is to well, really, do almost nothing. Activity level very low. my medication sensitivies are extremely high.
    My husband is a nurse and has spoken with another doctor and I may have some hope in one medication if my body can tolerate that I am already on…if I can increase it. I have tried before, but so hard to tolerate it. This doctor told him a different way to do it.
    I am sure, you have heard all of this before. I know I have from everyone. I hate the most the people who ask me….Have you tried Excedrin Migraine? LOL…I want to slap them actually. Why no, thank you why had I not thought of that???? I want to say.
    What I really wanted to say is that I admire you greatly for attempting to live a normal life and go to school. I could not do it.
    Also, that I have come to realize that living with this pain daily has taken away my life. It has distorted my thoughts on it. You forget what normal was. You lose hope. Depression easily overtakes you. You begin to settle in for this is going to be my life. That is very overwhelming and hard to deal with everyday on top of the pain. I could not actually tell you I remember what it is like to know what it feels like without pain in my head and neck. That has changed me.
    For me, I realized just recently that I needed to try again, to find something. It is such an uphill battle almost to ask too much of anyone. You are so young, my heart breaks for you to deal with it.
    I hope and wish that you can find something. I am sending you good thoughts, ❤

    • I’m sorry to hear about your suffering also, it sounds just as horrible to be honest, I hope you are able to tolerate the new medication and that it helps.
      Totally get what you mean I once had a neurologist tell me to take some paracetamol, to say I wanted to punch him in the face would be an understatement.

      I too have gotten rid of many neurologists, my current one (been the same for a few years now) is nice and I like him and he is a top neurologist and headache specialist in England but there isn’t anything more even he can do for me, which is really hard to deal with.

      I couldn’t go to school for a long time, I had to drop out of high school in 2012 because I just couldn’t cope with it, but this September I effectively went back to school, well an adult education course. I only manage 2 half days a week and even that’s a push and I’m really struggling with it. It’s not that I don’t want to do it or that I don’t enjoy the course, I do and I love to learn but the pain is really bad most of the time, concentrating is really hard and makes the pain worse, so it’s really difficult, I spend a lot of time in bed or on the sofa not being able to do anything still.

      I feel the same way. I will have had NDPH for 5 years in January, I can’t remember what it feels like to not be in pain either. The pain has changed me too.
      Thank you for your kind words it means a lot, I hope you are having a low pain day at least. ❤

      • Well, I am I just got over being at a 10 for over a month. That is how I live my month now. Describing it to people in numbers. What helps me is being online. It distracts my mind from the pain unless my symptoms are so bad, that I cannot handle being on.
        I sit on the couch. When my symptoms get really bad, spike, I have to lay down and suffer it through of course.
        I know what you mean about wanting to do it but the pain is too much. So many things I want to do…but then my neck will hurt so badly. I get horrible knots in it…from my migraines. Which then makes head pain worse..then migraine spike…so I just do nothing…it is like a cycle.
        Thank you for your kind words as well. Sometimes it helps to know we are not alone.
        Not many understand.
        OH, I have a funny story of a neurologist. I kept telling her…my head hurt. Actually hurt to touch it. She was so mean. First one I fired. (It does too often like someone hit me with a baseball bat) So finally one visit she put me up on exam table and touched my scalp. I jumped like a foot in the air. She said…”Oh does that hurt???”…!!!!! I said yes that hurt!!! That is what I have been telling you! She just rolled her eyes..and said huh..well I don’t know, I guess your head hurts to touch it….your MRI is fine…I totally wanted to punch her…hahahaha..I almost cannot believe I did not…
        Well, I have taken up your time…
        Have a good day, good luck with school…hoping you have low pain as much as possible as well..
        Maybe we will talk again ❤

      • Yeah that helps me too, I usually just stay in bed when it’s bad, so a lot of the time, I just have to suffer through it because no medications help. It does help to know you’re not alone, I’m a member of quite a few facebook groups, one for NDPH and a few chronic migraine ones, they help too because people there understand because they are going through the same/similar things, whereas most people do not get it at all.
        That neurologist sounds awful, good that you fired her, sometimes I really fail to understand how some of these doctors passed medical school to be honest with how appalling some of them are.
        If you ever want to talk, feel free to email me 🙂
        Thank you, I have a half day at college tomorrow, it probably won’t go too well though considering how bad today has been.

  5. Reading this made my heart ache for you. My hope is you feel better soon and know that it is perfectly okay to mourn things you may not be able to do anymore. To know that it is okay to cry at nights and mornings, whenever pain strikes you, don’t hold it in. As another young person, although I do not suffer from what you do, my disease is different, I can tell you that releasing my feelings has helped the emotional pain, yes, but the physical is still there. But knowing we have others who can join in our pain helps some. I do wish you all the best, Sian. ❤

Leave a Reply

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s