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headaches and bad balance problems for 18 months

Posted , 5 users are following.

jude62
jude62

Hello

I'm very new to this site (today in fact!) I was wondering if anyone has been diagnosed with cervicogenic headache? I've tried lots of things to try to help but it continues to be a daily battle to try and stay positive. After lots of different treatments, I have been referred to have botox head injections, I am desperately trying to stay positive and hoping this might help. I was wondering if anyone has had the treatment and how successful it might have been for you.

Does anyone know of any support groups in the south west?  

0 likes, 12 replies

12 Replies

  • rachD123
    rachD123 jude62

    Posted

    Hi, I didn't try injections but I wanted to give you a positive story as I had these headaches everyday for about 18 months and it was sole destroying. Mine gradually faded away and although I still get flare ups they typically only last a week or so. I find that I need to rest my arms (no heavy lifting, hoovering, mopping etc) to calm it down

    • jude62
      jude62 rachD123

      Posted

      hi rach, thank you so much for posting back to me, it's great to hear your headaches are beginning to fade away and being a total novice at this I was so excited to see someone had kindly replied. Were you prescribed any medication? I'm on beta blockers and blood pressure tablets, I always worry a bit that often the side effects of a lot of the tablets often seem to be the same as the problem! Anyway I think

      finding out about this site will help soooo much, I live on my own and sometimes it's good to be able to have a wee moan to others instead of just chatting to my lovely  (very patient!) assistance dog!

    • rachD123
      rachD123 jude62

      Posted

      Hiya, my only medication is 10 mg of amitriptaline. I also started to go to the gym building up my muscle strength but very slowly. I hope you find something to help you
  • emma93780
    emma93780 jude62

    Posted

    I have been diagnosed with vestibular migraines but I'm seriously doubting what they say, I have a headache everyday, I wake up with a headache and go to bed with a headache! I have really bad dizzy spells and my balance is off nearly all the time, I also have a horrid heavy head feeling all the time! I've never had my neck checked out although I feel it needs to be, I do suffer with tmj and am waiting Botox in my muscles in my face to stop me clenching my jaw etc I have had this condition going on 13 months now and it's seriously getting me down now! Welcome to the site you will find a lot of useful information on this site and some very sympathetic people with similar symptoms who will be able to help you and give you advise your not alone xx

    • jude62
      jude62 emma93780

      Posted

      hi emma, I'm so sorry you are so poorly too, I can totally relate but you're right, it has been really good to find somewhere to be able to share and talk to people with similar problems, thank you.

      I was wondering if anyone had suggested maybe a night mouth guard might possibly help? may not help at all but it might be worth another avenue to explore? Yes, I find the only time the headache subsides a bit is when I'm sleeping and when I wake up, for a minute or so, if I lie really still, I can remember what I used to be like 18 months ago, then I move and . . . . . . here we go again! I have had four or five different diagnosis and I too am not 100% sure we have reached the right diagnosis either. I guess it has to be a process of elimination but while there are still a couple of options left, I'm trying to embrace every new treatment and stay positive. Did anything trigger off the start of your headaches? I collapsed a year and a half ago and it started then for me, I feel this is very relevant but no one else does! thank for not making me feel so alone, I shall start tomorrow trying to be much more positive. 

  • davidCa
    davidCa jude62

    Posted

    Hi,

    I have cervical issues, bulging disc etc, and mine cause horrable headaches, i found out that was the cause by being put on gab, but i do think your Dr may have started you on to high a dose, i was told you need to work up slow, i was taking a 300mg at bedtime for 3 mos, then added another, and after a yr i didnt think i was getting help from the gab. well after i stoped taking it i found out it was really helping my headaches, cause they were back every day. i called my dr, and once i was back on gab, my headaches were improving, i then went up to 3 x 300mg a day, and and the only thing i can say is about every yr i need to go up a pill per day. but it helps me, i do know it really depends on your body, some people really have bad side effects. you may need to try something else, i know my neck is getting worse with age, so i may have to push my surgeon to operate, i have been to 2 other Surgeons and they wont operate, due to i had cancer and having radiation in my neck, they say it will cause problems with recovering from a surgery in that area. i hope you find something. 

    • jude62
      jude62 davidCa

      Posted

      Good morning

      Nice to log on and be able to see I'm not sitting here just chatting to my dog! Sounds like you've been suffering with your headaches much longer than I have, it must be soo difficult for you, how long have you had them? is it since your surgery? I'm so new at this sort of thing that I'm afraid I don't even know what gab stands for (gabapentin?) I have to be very careful about which drugs I have as my balance was bad even before these wretched headaches, so I have to be very careful not to make it worse as I live on my own and even the dog wouldn't be able to fetch help for me! my friend also has cancer and has radiation treatment in his neck, he suffers every day too, such a shame in this wonderful technology age there isn't a pill that works for headaches without all the dreadful side effects so many have. It's a long road isn't it? I guess that just staying positive is half the remedy.

      I'm hoping to find a local support group in the southwest as just in a day I find it's very uplifting meeting other people in similar situations. 

      I'm hoping the botox migraine injections will help, I had the greater occipital nerve injection 3 weeks ago but sadly it didn't make any difference which was a bit dissapointing. anyway happy sunday, I wish you well too. 

       

    • davidCa
      davidCa jude62

      Posted

      Hi jude62

       well i have had headaches a lot of yrs, but it wasn't till my neck has gotten worse maybe 5yrs ago that they turned into a almost daily thing, i would come home from work, used what ever durg, heating pad, i could find, i know the Gabapenton, has some bad possible side effects, i had several of them the first pill i took, and the next day i was good, it helps me for now, i have had i think 7 surgrys, but not my cervical, yet, its because of the cancer i had in 2008, and had to have chemo, radiation, that they haven't been willing to help me in my cervical disc so far. but now with the effort of phisical theropy for my hand surgery, that has been really making havic on my neck, i am going to push for neck to be one of my next things if i can find a surgeon that will operate, ( i plan to ask my hand surgeon this week) i do have another procedure at the end of the month, unrelated, rectal prolapse, they did a banding a week ago, and going to do 2-4 more to fix that issue. I can really feel for your friend,, just tell him pray hard, i think oral cancer is one of the tough ones to get through, Yeah i survived the cancer, but it seams that a lot of problems have come out of the cancer solutions, but hey i am still here 8 yrs later, biggrin, a few Drs said the cervical issues may be a direct result of the radiation, but i really don't know. radiation made my jaw bone die, so i had to get a couple teeth decapatated. they said if they pulled them it can cause bad infection (deadly) or break my jawbone, both major things. 

        on the meds, Gab included just try to be patient, go slow, Gab can work, but don't be affraid to tell your Dr that it is not working and give you something else, you are the boss, not the Dr.

      my wife is a loot of support, but i found this site a while back, and i like it i can get info, and try to share my thoughts and trials. 

       

    • jude62
      jude62 davidCa

      Posted

      Hi david

      what a dreadful time you have been through, it must be such a blessing to have your wife by your side. I'm I'm still working round this site and not being very computer literate I'm sill a bit muddled with it all, I had encephalitis and to say I'm a bit slow at working new things out is an understatement!

      My computer is playing me up at the moment so I'm trying to use my iPad, my son in law will be here on the weekend and he's kindly said he'll show me how to use the site and explain things like 'thread' etc and fix my computer too.

      i hope you've had a good day and not too bad headaches, is your headache a bit easier if you sit and don't try move about too much? 

    • davidCa
      davidCa jude62

      Posted

      i have good and bad days, and it takes a toll on my wife, so i do try not to stress her if i can help it, we have both been through some bad medical stuff. i had a visit with both my surgeon and gp yesterday, and was given approval for another 8 weeks disability, but found out my high use of ibupropin is making my blood pressure gradually go up,  6 mos ago it was in the 130, and now going to 176,  i had to stop taking it last night, that was bad, woke up this morning, and my hand ( 5 mos ago thumb joint, and carpal) was so bad i could not stand it, i got up took my morning dose of gab and back to bed, it was quite a bit better 2 hrs later, but still need to get something, i will be going to a pain clinic i hope this week. i take gab for my neck, but found out this morning it is a help to my hand also. 

      i hope your day was better also.

  • kris11713
    kris11713 jude62

    Posted

    what is a cervicogenis headache?  I have swelling on left side of neck, pain under ear and chin which goes down throat; lots of headaches, some fever and no energy.  Any ideas or others like me?
    • jude62
      jude62 kris11713

      Posted

      hello fellow headache sufferer

      sounds like you're having a rubbish time too, have you had your headaches for long? 

      i think it is to do with the occipital nerve which goes up the side of your neck and up to your head. My headache is a little different it is similar to you with a swelling and all on one side but doesn't go under my chin and down my throat. Have you seen the doctor? 

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