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How long do worse phases last? Pillow advice

Posted , 6 users are following.

rachD123
rachD123

I have had symptoms of cs for 14 months now. Primarily headaches but more recently arm pain. I am trying to manage without medication which isn't always easy. I have noticed that my headaches, whilst always there, go though periods of better/worse phases. A bad phase typically lasting 2 weeks before going back to base level. At the moment I am also having left arm pain and hoping that to will go / reduce. I know everyone is different but wondering if anybody else also gets phases and how long they typically last. My hope is that I will get longer and longer in between them as I learn to manage the condition. Also, I currently have a goose pillow which seems to have helped a bit with the headaches. I tried cervical memory foam pillow but felt it put too much pressure on neck. What do you use? Any other advice for pain management? I have found light exercise to be good. I guess it's just keeping moving to keep muscles from getting too tight. I have a 3 year old so don't get to sit too much ha ha x

0 likes, 17 replies

17 Replies

  • roz11934
    roz11934 rachD123

    Posted

    I am severely affected by cold weather and have to sleep with  head and neck well covered, If I get in a draught or a room that is too cold it will be bad for months sometimes... Right now I am pretty much fine, however I am really dreading the onset of Winter...

    You might like to look for some oil called Woodlock oil. I first discovered it whilst having acupuncture at a Chinese place... I buy it from a site in Hong Kong via Ebay... I buy in bulk about 4 bottles for £30 or thereabouts... I apply it lavishly anywhere that hurts. That includes headaches... The pain goes really fast and I consider it an absolute miracle potion...

    Hope this helps... I take lots of supplements too, if you want a list I will send you one... However as I have had this nasty for a very long time, maybe 25-30 years and am now 70 next month I fuly intend to stay as fit as possible...

    Good luck.

    Roz

    • rachD123
      rachD123 roz11934

      Posted

      Hi roz, what supplements do you take? I'm taking glucosamine, chondroitin and msm which I thought was helping but now not to sure. Has your condition worsened over the years or improved in terms of symptoms? I know everybody is different but read that 90% experience less symptoms after 15 years. Thanks for the tip on woodlock oil. I will google it later.

      Lamamma, I only had the head pain for the first 8 months. Only had three episodes of arm pain/weekness (one now) and hoping it doesn't last much longer. My head pain is mainly at the back and to the right. I get tension in the forehead but it doesn't really effect my face. Be keen to see how you get on with injections. I was offered but declined as at the time pain levels had been good for a few weeks. Every now and then I wish I had said yes but overall I hope to be medication free x x

    • Lamamma8
      Lamamma8 rachD123

      Posted

      I am not on any medication as nothing seems to work , so hence the injections, i was terrified of all the gossip about them , hardly felt them, nothing like I thought it was going to be ..I give it a week and let you know,I cannot turn my neck to the left and was so painful so we will see and my head pain  is on the back like its been hit ,I  have religiously always taken Cod Liver Oil and Calcium Tablets for years, may take a look at the Oil...
  • Lamamma8
    Lamamma8 rachD123

    Posted

    Hello there, 

    that is so weird that u said Goose Pillow cos someonelse recommended that to me , I have recently had pain injections in my neck.At the moment I feel like I have been hit in the head but was told it has to get worse to get better.I only had it done on Thursday so I am confident.I think yours maybe worse than mine as I have severe neck pain and back of head permanently aching, but pain doesnt go over all the head or down the arms..i get pins and needle in the face .. I wish you get some sort of comfort from all this.

  • roz11934
    roz11934 rachD123

    Posted

    My daily supplements:

    Vitamins D3 10,000 mg

    Vitamin C 2000 mg

    Vitamin E 400 mg

    Cod liver oil 1000 mg

    Coq10 200 mg

    Magnesium 2000 mg

    Nattokinese

    Serapeptase

    Wormwood

    The last 3 are not specified amounts on the bottles

    Occasionally I have a course of pharmaceutical B12 as I am vegetarian... I also use Hydrogen peroxide to oxygenate my body when I am really down. I use 35% food grade diluted 16 to one with water...

    Sounds a lot but at least I know what they all do. I will leave you to look it up for yourself... Do not be distracted by what you think you know...

    The one thing I would not be without is the Woodlock oil. It is the best pain killer I have ever come across. I am on prescribed cocodamol supposed to be 8 per day. I only take 2 at night...

    Multi vitamins are a waste of money, the amounts are far too low to ever do any good at all... The most expensive supplement on the list is the Coq10. I pay about £10 from Amazon, 90 capsules, very good quality...

    Hope this all helps...

    Roz

     

    • Lamamma8
      Lamamma8 roz11934

      Posted

      I am prescribed on 30/500 mg Zapain and like yourself I only take 2 of a night just to sleep, I feel tired all day if I take the 8 a day ..

       

  • rachD123
    rachD123

    Posted

    I have ordered some woodlock oil. Excellent reviews on amazon so looking forward to giving it a try. I will let you know how I get on. Do you apply it to the scalp for headaches or just back of neck? I will look into further supplements. I have just started cod liver oil as well (2 days in) and I have calcium, magnesium and zinc as well as tumeric in the cupboard. Not taking yet as building up to check no allergic reaction etc. I will look into the others. I don't need anything to sleep. Out like a light x x
    • Lamamma8
      Lamamma8 rachD123

      Posted

      Good luck then, I have taken. Calcium and C LiVer for years and years.let us know how u get on with the oil ..x

       

  • roz11934
    roz11934 rachD123

    Posted

    I use the woodlock on my temples, neck and forehead. It has a very strong smell...

    I have a memory foam pillow made by a company called SNUG. When you take off the foam cover, you can see slots cut into the main body of the pillow making it softer than the normal shaped ones... I have a cheap Tesco micro fibre very soft, very thin pillow on top of that which I discard once I get sleepy. I wrap my head in an old polyester sarong leaving the back unwrapped, make sure my neck is well covered... Then hope for a few hours sleep...

    Roz

    • Lamamma8
      Lamamma8 roz11934

      Posted

      I have to get my feather pillow And really punch it up and under my neck , then I wouldnt even know I had anything wrong with my neck. .

      cant believe it .

  • sasha78769
    sasha78769 rachD123

    Posted

    Hi rachD123, headaches are fairly common with CS and I think you're brave to try to manage without pain relief. It pays to be tuned in to what seems to cause symptoms like headaches and arm pain and try to avoid things that trigger them - not always easy. You're right to keep moving but don't over-do it. Learn to recognise any slight reactions, such as tingling in your fingers. prickling down your arm or aching across your shoulders. Alternating a hot wheat bag with a pack of frozen peas at the back of your neck sometimes helps, as does a hot shower or soak in the bath. If you can, go for a neck and shoulder massage, to loosen up irritable, tight muscles, or get a friend or partner to help you. I am a massage therapist who also suffers from CS and some of my clients come regularly to help their aches and pains. I use lavender essential oil as it relaxes the body and is very therapeutic. As for pillows, I won't go anywhere without my Putnams pillow. It is made of foam rubber and supports my head and neck firmly and comfortably. I find it best to sleep on my back or, if on my side, with a pillow to support my uppermost leg. Have you had your diagnosis confirmed with an MRI scan? This would confirm that there is pressure on a nerve root, causing the pain. I had my first prolapsed disc at age 47 and after three years of misery finally had the offending disc removed and the two vertebrae fused. This gave me about 14 years free from pain. Unfortunately I now have a second prolapsed disc (next to the last one) and I am reliving the same pain again. My advice to anyone have a cervical spine fusion is to treat their spine with respect and not over exert their necks. Anyway I wish to all the best - don't put up with too much pain, though, your body can get into a cycle of pain which is difficult to break.

     

    • rachD123
      rachD123 sasha78769

      Posted

      Hi Sasha,

      Thank you for your reply. Unfortunately, having tried amitriptline and gabepentin which both lost effectiveness requiring increasing dosages my gp offered no alternatives and suggested I self manage.  I have only been doing this a few months.  At the moment the headaches seem manageable although i do have a reduced quality of life as the pain is always there to one degree or another.  I can do the same things but sometimes with less enjoyment than i would like. I was referred to the pain clinic for nerve blocks but as pain levels had been low for a few weeks i decided to leave it for now.  I have days when i regret this but it isn't a permanent solution anyway. Probably would have worn off by now.

      I have had an MRI which confirmed c6-7 bulge with nerve impingement and mild spinal canal narrowing.  Multi level non compressive DDD also seen.  My gp doesn't believe i should be getting headaches from this (obviously am). In fact he said that due to the location of the nerve impingement i shouldn't be getting any pain at all.  He wasn't very unsympathetic and shrugged his shoulders at me!!!

      My decision to self-manage may seem brave but really i have been left with no alternative so trying to research as much as possible and learn how best to treat.  I am only 35 years old so concerned about the condition worsening over time but have read that by the 15 year point approx 80% of patients become asymptomatic which is a comfort but i hvae found little evidence of this on patient forums.  Then again if i had found relief from the symptoms  i would probably no longer visit the forums.

      The new arm pain / weakness is a concern.  I do have pain in the shoulder muscles though so maybe a massage from my boyfriend might do the trick.

    • sasha78769
      sasha78769 rachD123

      Posted

      Hi Rach

      Like you, I found gabepentin and amytriptiline unhelpful, as they made me feel totally spaced out. I am currently taking Dosulepin which in higher doses is an antidepressant. This has been really helpful, although I still have to be careful and not overstretch my neck. My first episode of bulging discs was at the same location as yours and it was this area that was eventually fused. However, this puts an extra strain on the discs above and below and now the disc below has gone. I know this seems a bit depressing but the best course is to keep your neck and shoulder muscles strong and flexible - by keeping moving (which you do) and maybe even yoga or pilates exercises. It might be worth looking into. Don't accept the disinterest from your GP - it's a typical response when they don't know what to do next. I have found the pain clinic far more knowledgeable and sympathetic so try to get back to them and let them know that as a young mother you need more help to cope. Best of luck.

    • Gerry_the_neck
      Gerry_the_neck sasha78769

      Posted

      Hi Sasha

      I've read some of your posts,  noted that you are a massage therapist,  and I think you have some savvy about these C/S issues and how best to self manage.  I've put some work into devising a self management guide for C/S  and was wondering if you'd care to look it over and maybe offer opinions.  Only if you are interested,  I could send it by PM.

      There's so little info out there to help C/S patients....and posting can be a bit piecemeal.

      Regards

      Gerry

  • glj1251
    glj1251 rachD123

    Posted

    Hi guys I also have this condition it first flared up about 5 years ago. I have narrowing between c5 and c6 which is causing compression on my spinal cord.after my initial pain flare up I as the doctor who thought it was a muscle spasm he prescribed me steroid tablets which cleared it in a few days. The last 2 years I have had a numbness down the left side of my arm I saw a surgeon and neurologist who told me it was just general wear and tear and as it wasn't affecting me too much better to live with it than surgery. I was regularly seeing a physio to get traction and it really helps can't recommend it enough although I've read it doesn't work for everyone. My physio is great she used to be physio for England rugby team so knows her stuff. She has recommended I go back to see neurosurgeon and has told me surgery might be the answer and assure me it's nothing to worry about. I am due to see him Monday so fingers crossed he can help. I have read in many forums people talking about pain relief and saying it doesn't work or still painful I was wondering why people don't go for surgery? And if any of you guys have considered it? I have read many things on line about it and it doesn't sound nowhere near as bad as it sounds with low risks and 80-90% success rate?
    • Lamamma8
      Lamamma8 glj1251

      Posted

      Well good luck with your. Consultation, I am now a. Fortnight into my Neck Injections and sorry to say they havnt worked too much,eased a bit but the areas that havnt are more painful if that makes sense. What next, I do Pilates and some neck excercises , I am never still but the Pain like everyone elses gets you down at times. So What Next !!! For me..the thing is my follow up appt is December, nearly 5 months to let them know it didnt work....even if it had it probably would have worn off by then...NHS!!!!
    • glj1251
      glj1251 Lamamma8

      Posted

      Have you tried traction it really helps me?
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