Bit down-Question­čś×

Hi everyone,

Have been feeling a bit down recently, mostly because I am taking most of my frustration out on my husband and don't mean to as he is a great support.

Since the TBI (March 2014), I have worked really hard at getting all the care I can, but I am lost with respect to how to control the daily headaches and weekly migraines attacks, which also seem to have an impact on my neck hurting and make my balance/dizziness issues worse. I have tried a number of treatments eg: drugs from Neuroligst, support from a Neuropsychiatrist and therapy for PTSD (trying to minimise any emotional influence on the headaches). I am going to see an ENT specialist next week just to check out if there are any issues with my Sinus areas. BUT, the pain is almost unbearable and is not responding to even regular preventative drugs (of which I have tried many!).

Has anyone suffered with this sort of thing and tried anything else that has worked. I am trying to continue to do things, but it is really impacting on the quality of my life, but more importantly those whom I love the most­čś×!

23 Replies

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  • Sorry Annie, I wish I had some answers but sadly not. I just wanted to say I know how crippling these headaches can be and I sincerely hope you have some success in finding a helpful treatment.

    I find that prochlorperazine helps to minimize the dizziness, but for the headaches I find nothing works. So I take the edge off with codeine although I don't use them routinely as I know that over-use can exacerbate the problem.

    All best wishes , Cat x

  • Many thanks for your reply. Just having a bit of a bad week- sorry for going on and on- it seems so self indulgent.

    Just needed to get it off my chest and not feel so alone with my thoughts.

  • Do they know the cause? Did you damage nerves at all?

    I used to get regular headaches that felt like I had been shot thru the back of the head with a metal pole and it was sat behind my eye. It was so intense I used to just drop with them. Sometimes it lasted seconds other times it was less intense and lasted days. It was a grim time.

    I had lots of physio for my neck but it was a combination of accupuncture and regular meds, eyes got sorted by neuro ophthalmologist and changing my diet and most of all plain old time.

    It still gets me sometimes, I need to relax and do deep breathing, go to bed and do nothing, and I mean nothing for a day at least.

    Just because it worked for me doesn't mean it will work for you but it's worth a try.

  • Thank you so much for your response- greatly appreciated. I will look into my diet big time and rest is something I know I need to do more of- just get SO frustrated with it all!! Need to get to grips with the mindfulness- just not very good at it yet!!

  • I found Mindfulness surprisingly helpful in reducing stress and anxiety. We were a group of moderate brain injury people and the teacher is a BI OT so she could tailor the course to us. Now the course has finished I'm letting things slip when I know I need to keep it up, we have been given some CDs.

    With Mindfulness I thought I would never 'get it', but it suddenly snapped in and I could manage to let things go and not get agitated which meant I didn't get so many headaches or have to apologise to family for getting snappy.

    I've been doing it for 6 months.

  • I know this might be obvious but have you spoken to your doctor to find a treatment to your problems

    All the Best

  • Am under a Neurologist who is monitoring me, but he has given me a list of pretty strong preventative drugs which are taken every day. I am working my way through them, but you have to take a hit one for at least 3 months to see the impact. The problem is each one I take seems to make my balance issues a lot worse- catch 22!!

  • I apologise in advance for asking the obvious but are you remembering to report the problems to the neurologist - I ask because if I am not strong I ALWAYS forget what I am wanting to say at the appointments

  • Yes, I usually make some notes and bring them in with me when I see him. Your right, I would forget to tell him everything if. I did not do that!

  • Hi. Yes since my last brain operation in 2005 I have had Chronic Pain from my Righthand side.

    This starts from my neck all the way down to my foot.

    To date I have tryed numerous meds which are either to strong or to weak.

    Over the past few years I have been put forward for some "Deep Brain Stimulation" Treatment.

    This is my only hope off Pain reduction. But the "NHS" won't Fund it.

    I find that there are two triggers for my Pain Increasing.

    No: 1. Neck movement.

    No: 2. Emotional.

    I have been given a Neck Brace via one off my Neurologists. This works very well.

    On an emotional level l currently try to stear clear off any conflicts as much as I can which also helps me greatly.

    Please contact me if I can help you more??

    Steve.

  • Thanks Steve- your comments are very helpful. Hope you are feeling a bit better too.

  • Hi. No Probs at all - as they say a "Problem Shared is a Problem Halved"

    Please let me know if I can help you further??

    Steve.

  • sorry to read youre problems,my hubby doesnot have headaches etc,but does suffer low mood sometimes,try to stay posative and find out what works for you,hugs

  • I found that the cluster/mirganes/genral headakes don't respond, just a matter of waiting it out.

    for myself it's normally because i'm over tired and/or stressed.

    in a chicken/egg if I can feel recovered enough and do some decent exercise, for me this lifts my mood tremendously. i have been dipping in and out of depression for best part of a year now.

  • Many thanks - your right about exercise and I Know I need to keep focused on being well - thinking of starting up yoga as my physiotherapist teaches it, as. I think I need to take control of my head a little better!

  • I have migraine in clusters and find that most drugs barely take the edge off. Giving in to it seems to be the only real therapy. There isn't a lot you can do to make the pain go away, but I use a combination of relaxation/self-hypnosis techniques to take my mind off it, ensure blood sugar and hydration levels are kept to a maximum, spend as much time horizontal as possible (although I usually have no option during the acute stages I know that the longer I lie down, the less likely the attack is to resurface in an acute way). I use heat and cold too -a combination and alternation of wheat bags and ice packs placed on forehead, eyes and back of the neck.

    I haven't found any definite triggers. I thought there might be a hormonal pattern but even that isn't obvious from diary monitoring.

    And thus far the only prophylactic I have been offered is low dose betablockers....which don't work, for me.

    Don't know if any of that will be of any use, but hope you do get some relief soon.

  • Thanks so much - very helpful indeed.

  • Hi Annie

    It sounds like you have a lot going on and I have a couple of questions for you if you don't mind.

    Have you considered counselling to help you come to terms with the emotional impact of the TBI and the new you? Some GPs do referrals but quite a few charities offer affordable sessions.

    Are you learning to pace and rest? This is THE most effective way for me to manage to avoid the headaches.

    Is your physiotherapist a neuro physiotherapist? I still do the exercises every day just to keep what I have managed to recover.

    Are you keeping a diary of what you do each day and when the headaches strike? It can be really good helping you to work out what the triggers are.

    Hope some of this is useful for you.

    Lovenhugs

    Xoxo

  • I am so touched by everyone's responses - thank you ­čśä

    I did have 18 weeks of specialist therapy input and it was painful but very productive. Unfortunately, I was referred into another service who deal with PTSD therapy, but it's taken months to finally get the second assessment and now I have to wait for another 3-4 months to get the treatment I need, which I know will impact positively on the headaches/migraines- good old National Health- great service but not very proactive!

    I will look into other private options and use some savings if I can, as I know I really need this therapy to move on. I think you picked up on something that I really need to pay more attention towards eg: rest/ not good at this one-'boom and bust' is me despite going to fatigue management sessions! I will definitely start a diary to see if there are any patterns in when they come, particularly in relation to my sleep patterns. Thanks once again for just being there!!

  • just a general question here really for Annie et al, do any of you have Thyroid problems also and take Thyroxine. I have and do, (since 2000) - a blood test earlier this year also confirmed its now autoimmune Thyroiditis (Hashimoto's) and quite a few on that Community have problems similiar to many of those described here, I have the neck and bone problems but seem to have been lucky in escaping the debilitating headaches, except decades ago, when I had migraine headaches, which vanished after several months almost as quickly as they'd started.

    Ive had several weird bouts of different things over the years before and since, which I'd never really given much thought to, just dealt with them as they occurred.

    it's only a few months ago, that I thought Ok, an unexpected sudden aneurysm & brain Haemorrage, no physical cause obvious cause, then a specific blood test at my demand earlier this year, showed up the autoimmunity, last year I was also diagnosed with unspecified liver cirrhosis' after they'd tested for Hepatitis and probably HIV, just As my son was when he unexpectedly, collapsed at University one year. they couldn't say what it was but after several days of trying different antibiotics his blood tests did improve, but they couldn't tell him what caused the collapse! My father had TB just after ww2 finished and after or before I was born. Old tb was one of the causes put on his death certificate in 1998, he'd also had a reccurence of it in the early 90's.

    So I decided it was time to try and put all these things down in writing, my underlying infection could have started when I was a baby (TB infected gland in neck operation). The thyroid, para thyroids and pituatory are pretty much the most important glands for sorting us out with many of our organs. Especially as it's the liver supposed to store toxins, and carries the blood from there to the brain. I was out at a theatre Friday night, and since Sinday have had a streaming cold and bad throat, clearing up a little today, but no antibiotics, I am keeping totally clear of meds as far as I can, to help the liver.

    More women than men have thyroid problems. Just a thought, that promoted the question! So please don't panic, most,if not all of you probably don't have a Thyroid condition or Collection of weird health events like me plus over the time, similiar after effects, But so many people are searching for answers to things these days, I just thought I'd mention it!.

  • Many thanks. I think I will have a few blood tests just to check my overall health out once more. Take care ­čśä

  • hi Annie, hope you get your blood tests done OK, let us know how you get on? have a good weekend :-) Shirley x

  • Hi Shirley, I Have booked the appointment to talk to him about having some blood tests-will let you know how I get on! Take care

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