HOW DO YOU FEEL EACH DAY????

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Hi chiarian, i just reading my diary, I looked at the last 3 months of my up and down from the time I started using my two crutches I m now only walking with one crutch..and eventhough headache still in agony and mostly when doing sudden movement, bend down, coughing, sneezing, swallowing too much, laughing is just impossible without getting black - out, I am still positive and not giving up..I try as much as i could to motivate myself and keep thanking GOD that my appointment to see the 2nd appt is getting I just can't wait for my op.. now what I like to find out from you all is...does your medication help you at all?, do you feel terrible first thing in the morning..is feel like impossible to wake up..then 20 minutes after that you are ok..then struggling? and starting 6pm..go weak again..up t 9pm unberable headache come ago/..tinggling sensation..unable to open your eyes, body aching..neck arms and legs also aching...pleae share with me how do you feel..or just me?...my magnesium oil help me a lot without it.I just unable to walk or wake up at all..please let me know weather i just me??? thank you  appreciated1111

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  • Posted

    Wow I was never that bad. My heart goes out to you. I had pressure headache first thing in morning to the point of nearly passing out or being sick. And any excertion would set it off. After the operation I still have pressure headaches but not on the scale they were. Even the dizziness and sickness is mimnal now. I'm 61 and life is better but I think age slows recovery a bit too. But hey I'm making most of it, started couple hrs as a domestic in a hospital and it's very sad to see cancer, stroke, dementia, they are nearly all end of life patients on my ward. Makes me appreciate things even more. I never thought over a year ago I would be able to do anything . so feel like giving little bit back. X
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    Hi, im now at the hospital to get my chiari studied one more time, I want to get my surgery done as fast as possible now. My surgery was appointed for the 16th December and im really looking forward to be free of these headaches, kisses from Uruguay.
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  • Posted

    Hi b2wc97455 we have spoken before so I won't bother listing my own day to day experiences to you again but I just wanted to mention that struggling with the symptoms you mentioned above can often be exaggerated by the fact that you may not have found the right individual balance of medication for you, which is very difficult. Sometimes a certain medication may not seem useful but it may be that it isn't useful at that particular dose or even just the time of day you take it.

    I am pretty much out of options as far as painkillers go but I started setting my alarm to take the first set a few hours before I want to get up for the day so that when I wake up in pain, I can take the second set of painkillers. This means I don't spend the first 4-8 hours of the day just waiting to feel well enough to do anything and also it was quite demotivating to wake up and take a set of painkillers knowing that they weren't actually going to help until I can take more 4 hours later. I did not change the medication or the dose, I just simply changed the times I take them and have found them to be of far more benefit to me now.

    The balance is different for each person so it is up to the patient to explore what works best for them. Everything you take should be under the advice of a doctor, but you should be discussing ways of tailoring treatment options to your own needs. Instead of negetive thoughts like "These tablets don't do anything for me" or "The side effects out weigh the benefits of these tablets" try asking "Am I doing eveything I can to give this medication it's best chance of working?" or "Are there any ways I can minimize the side effects".

    I would honestly say that it is very difficult to find the right balance for you, especially as something that works well one day, may not work well the next day so you will have to continually observe and modify how you do things. I know from speaking to you previously that you have a strong pro-active attitude and are aware of the benefits of keeping a diary so I think you have no problem taking the lead with your own recovery.

    Aside from the medication which is there to manage the day to day symptoms of your recovery, it is important to keep some perspective of the bigger picture for you long term. Decompression surgery is primarily done to prevent further deterioration of a patient rather than to improve their health or even quality of life. Many people are lucky to experience an almost instant relief of certain symptoms following surgery whilst others like myself feel considerably worse in comparison to before. This does not mean that I should not have got the surgery, if I had not I almost certainly would have become paralyzed in all four limbs due the the syrinx.

    Doctors look at the bigger picture which can be very frustrating. Many of us know how it feels to have surgeons show you a scan and tell you how much better you are when you are telling them how much worse you feel. Patients live at the opposite end of the scale, the more you suffer the more short term your thinking becomes so when you are told "Why don't we try this pain treatment that may help you...see you in a few months" all you can think is "I don't know if I can do the rest of the day like this, let alone months!"

    Try and see your recovery from both sides. Keep in mind the purpose of the surgery, especially in terms of the years ahead but also help the doctors to understand the day to day impact of things for you so that things are managable for you.

    If you feel well enough, please update us after your surgery as to what you are struggling with most. Again everyone is different but like me you may find that you are ok with some things that are expected to cause difficulty after surgery, but bothered more by symptoms that you weren't quite as ready for.

    Between the group on this site there is plenty of experience to draw from and I know that any tips or advice that people found useful themselves after surgery really makes you wish you could pass the info on to the next person in that situation in case you can save them the battle of figuring it out for themselves. Best of luck, I hope you are in the right frame of mind to be excited about the surgery. I know this sounds weird but knowing the the recovery is long and hard can actually be used as possitive motivation. The more people warned me of the things to come, the more I thought "OK I accept that now, so let's do the surgery as soon as possible so I can get on with recovering!". As you know exhaustion can be very demotivating, which is why I make use of this site and the people like you I have spoken to so that I can fall back on the possitive attitude of others when my own feels too weak. I hope it picks you up the way talking to you and others has done for me.

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    • Posted

      Well said nihilo, after my surgery I wish I had found this sight as I was told oh you will be up and about in 4wks,! It's over a year now and some days are better than others, but a year ago I couldn't even bath my self. Now I'm working part time. Just couple hrs for few days. X
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    • Posted

      Hi Nihilo, yes thank you..., the reason I am now at the state wanting to have the operation due to 1, prevention to get worse and also 2. no medication giving me a relief instead giving me more side effect..so I hope and so positive that I would be the lucky one to have less pain and less inbalance, as i can't stand to be dependable to my family..as you can see I LIKE to be positive and proactive with my condition its quite difficult , a lot of the times I tried to hide it..but as the time goes by it is getting hard ..hence the quicker I have the surgery the better, mind you I am lucky all the health care professionals arround me are so helpful..thats why I keep saying to you..be assertive..dont give up if you feel they are ignoring you..i dont they are..its just they don't understand themself..so you have to educate them of how you feel about your condition...how are you getting on with them and your condition now..what medication are they px you?
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    • Posted

      Welldone Helen, at least you are more independent and you also working part time that is god sent..... are you still on medication? what are you taking? do you still under the treatment..are you still seeing your specialist or gp?
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    • Posted

      Good to hear you are feeling possitive and in control, it is crucial to your recovery.

      I am on tramadol for pain, I recently voiced my concerns to the pain clinic that I have been taking tramadol every day for over a year and they are less effective than they used to be. I have been given nefopan as an alternative. I don't know anything about it and I am waiting til tomorrow to try it in case in doesn't agree with me but I have been given it so I can have days on nefopan instead of tramadol and hopefully this will boost the affect of the tramadol.

      I also take anti sickness (cyclizine and buccastem) as and when I need them. I take duloxetine but can't say if or how it helps but I will continue with it as I read that some drugs work especially well when taken with another. This is why I still take paracetemol as the nurses on the ward told me it was very underated and it acts as a platform for other drugs to work off- I notice how paracetemol works well with tramadol but I do try to have as many days without it as I can.

      I have had all I can have in terms of medication and most has not worked well for me. I got considerable pain relief from pregablin but could not tolerate the side effects for long, this was after amitryptiline and gabapentin made me too sick and dizzy for me to get up to the correct dose and give them a fair chance. I know alot of people find these drugs quite beneficial though. I was given carbamezapine but got a severe rash immediately and had to stop them too.

      I have had chilli cream but couldn't feel anything at all, when I tried it on my good arm it burnt so much I had to wash it off! I have heard people with similar nerve pain say the chilli cream has been the most useful thing they have tried.

      To complement all of this I do physio exercises every day. I was discharged from physio last year and told they were sorry they could not help despite me continually telling them I find the physio very useful as I was a personal trainer so good joint allignment is important to me as it will prevent further injury but they only saw the fact that it did not take away my current pain. For me it is a good psychological tool as it is something I can turn to when having days when the painkillers aren't enough. Instead of the negetive panicy thoughts about "what else can I do?! I have had all I can have for pain relief and it's not getting better!" I can distract myself with stretches and mobility exercises. If I am still struggling I can try a different exercise or hot or cold compresses. It is important to me that I have something  can use that is not a strong drug that comes with it's own problems.

      All of this medication swapping takes time to give each new thing a trial so it can become very frustrating, which is why I spoke to you last time about keeping an eye on the long term goals and maintaining a good mind set.

      I have tried hypnosis and meditation. It is actually irrelevent as to whether or not anything works because the point is to keep a good attitude and openess to new ideas. As you know what works for me may not for you so as long as you just keep thinking "ok, tried that. What's next then" you won't fall in the trap of not caring because you doubt the next thing will help anyway. Write it all down so you can look back and see what has been working best for you.

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    • Posted

      Hi Nihilo, just like you, I keep on tract with the pharmaceutical's drugs if after 6 weeks you don't see any benefit you should go back to your gp either to titrate it up or change it either to the same class or different class, deluxitine is the cleanest SSRI with have less side effect vs the same class, I think you have a good gp, on the other hand perhaps if you already tried tramadol (which is combination of opiod/tramacet and  paracetemol) still not working you migh like to ask your gp to give you BUTRANS similar class but in a patch and stronger, as you know with the drugs..they are not curing they only help to suppress temporary, unlike diabetes, hypertension or heartdisease they are diseases that can be cured by changing the lifestyle i.e eating a proper diet food, exercises, living in a proper healthy lifestyle..but ours is mechanical error, just like a car its need changing..then it needs to be maintaining all the time.., I feel that after reading on the website..with chiarian I do believe the circulation need to be looked after (after the operation) unless there are other problems..so..magnesium, Omega 3, Accupunture, anti oxydant (such as: grapeseed extract, or olive leave extract/ORAC) are very important to be taken for mantaining the smooth recovery of our circulation on our brain...since I start taking that supplement and havng bath each day with EPsON salt /or massage with magnesium oil each day, I am now able to walk as before I was house bound..even though, my headache is excruciating..i am so positive that after surgery I will be even much better, I am taking on line course about health course/supplement now, so I do hope when I recovery I will be able to help people like us visiting them and provide them as much support as I can..as I can feel how struggle we are?
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    • Posted

      I can't take most medications as they make me sick. Consultant has just discharged me but said would be happy to see me again if I needed to. I try to use as less medication as I can and try to stay as fit as possible, whether it's even from a chair do as much as I could. I still have anti sickness tablets and just use Parecetmol . You just have to make the best of what you have but not to push yourself either. X
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    • Posted

      that is good Helen if you can avoid medication best to go ithout if you can..but magnesium oil is good to rub after a shower with no side effect or eat health diet with no fried food and no - no soda drink at all, anyway thanks for the info i will keep you update..have a lovely christmas
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    • Posted

      LOL..when you feel itchi you must buy the strong one, try to buy the one for sensitive skin or before you spray the magnesium oil rub baby/coconut oil on your body..then you won't be itchi..but the one for the sensitive skin won't be as strong as the one you have..or better still and most cost effective is to buy the magnesium flake and make it your self...have a great week end
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    • Posted

      Thank you, didn't know there was one for sentive skin. I try and just cope with it as long as I can. It doesn't bring me out in a rash so I think the benefits out way itch, haha. x
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