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Getting Migraines Under Control with a Cefaly device

Discussion in 'General ME/CFS Discussion' started by bertiedog, Jan 31, 2014.

  1. bertiedog

    bertiedog Senior Member

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    I really cannot quite believe it and it is early days yet but wanted to post that my almost daily migraines have been brought under control since the Cefaly device arrived this last Monday. Normally I have a migraine type head develop virtually every morning and this involved me needing a lot of medication over a week or month.

    I have tried changing my diet, time of waking up etc but nothing made any difference so in desperation I did 2 weeks of Lyica to try and break the habit of the migraines. All this did was make me feel very ill and the migraines switched to a horrible pain in the back of my head. It was a miserable time and I stopped the Lyrica after 2 weeks resolving never to take it again.

    Then early last week I noticed on the review of the papers on TV that the Daily Express were writing about a wonderful device that stopped migraines from starting and could also treat an attack and it was very successful in over 50% of migraine patients. The NHS was even going to use in in selected patients.

    Naturally I did some Google searches and this led me to the Cefaly.com and I looked up teh research and also the customer's reviews. On the whole they were excellent so I went ahead and ordered the device.

    In the meantime I had had a miserable time having got a very bad attack of the Norovirus which left me feeling like death with a horrible migraine which cleared last Friday. Because I was having to rest all the time I didn't get anymore migraines which is very unusual for me so maybe it was a good time for me to start this last Monday using the device twice daily.

    Definitely on Tuesday, Wednesday and probably Thursday morning I would have developed one of my nasty migraines because I started to feel pain developing having slept very badly through the night and over sleeping in the morning, something guaranteed to give me migraines.

    I used the device on programme 2 for about 8 am for 20 minutes and at the end of the time there was no sign of any pain. This has happened every morning so far.

    So although I realise it is very early days I am beginning to feel a lot more confident that I can control my migraines and might after a while not even have them start. So far a week has gone by since I have taken a painkiller whereas on a more normal week before I would have had to take around 18 or more painkillers plus strong meds like Sumatriptan.

    If things go on like this I can truly say this device would have changed how I feel about my life. Needless to say I don't have any connection to the Belgium company that manufacture the machine.

    Pam
    Hanna and Sea like this.
  2. minkeygirl

    minkeygirl Is Jim Jones alive and well on PR?

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    Congratulations for finding something that helped you. I suffered with migraines/headaches almost daily for several years. I went to every doctor I could find and no one had a clue.

    Then, in the 3rd of month of my titration off Klonopin I started dosing 2 times a day. OMG my headaches were gone! It was interdose withdrawal. I had always taken it once a day.

    I hope you have continued success with this device.

    Minks
  3. leela

    leela Slow But Hopeful

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    @bertiedog, would you mind explaining what your migraines feel like?
    I had looked into that device a while ago, but decided the nerve it acts on is not the main one
    that is involved for mine. Curious to know what your pain pattern is like.
    vli likes this.
  4. bertiedog

    bertiedog Senior Member

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    Hi Leela

    Usually they start inside my head, always one sided usually on the left. They would start early morning once I had woken. If I didn't take any painkillers the pain would keep building and within 2 hours it would be so bad it would make me feel ill and all I could do would be to keep thinking about the pain and would be prodding my head all the time.

    It would also spread down into my neck and shoulders. I had permanent golf ball like lumps around my shoulders and my neck would be rigid. Now it is lovely and soft and so are my shoulders so it was all related to the frequent migraines. I would use frozen peas on the side of the pain for maybe an 3/4 hour at a time which would give a little relief. Overall the migraines were so painful they made me feel terrible and would affect my energy. I have never been sick or rarely felt sick with a migraine, it was the pain that was so awful.

    On good days 1 paracetemol with caffeine plus a liquid Neurofen might get rid of it but often not and I would have to follow up with 50mg Sumatriptan. About once a week or so I would get a migraine that would last over a day and a half. This would wake me at night and the pain was there all the time. They used to make me feel suicidal and on days like that I would end up taking loads of medication which didn't really work to get rid of it.

    The only thing that would bring the attacks to an end was Acupuncture with a Chinese doctor where he would also give me a really strong massage to get everything moving. It used to feel like nothing was moving properly in my body and the pain was locked-in.

    That has all gone without having a migraine for a week.

    I hardly ever had the pain centred in the back of my head it was always within my head but around the temples.

    Hope that helps.

    Pam
    leela likes this.
  5. Aileen

    Aileen Senior Member

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    @bertiedog I too have very frequent migraines and usually a lesser headache most of the time in between. The trigeminal nerve is very much involved with mine. I'm on intimate terms with all 3 miserable branches of it! :cry: It varies each time, but I can get nasal, ear, facial, tooth and eye pain along with the headache. Plus the neck and shoulder stuff you mentioned.

    Since I also have severe sensitivity to odours, I was wondering if you notice any smell coming off the device when using it? Is it made of grey-coloured plastic or metal? I can't tell by the picture.

    Also, I see it requires using a gel. Which gel do you use, I see there are 2 kinds, and does it have an odour?
    Thanks. Glad you found some relief.

    @minkeygirl So sorry to hear about the dosing problem with the med! All that pain because of that is really rough. Glad you figured it out.
  6. Allyson

    Allyson *****

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    I also had migraines and still have persistet headaches - I find gentle massage helps - glad you found some relief Bertiedog and others

    I found mine were one of the many symptoms of EDS - a disease with many overlaps with ME
    Anyone with migraines ma y want to rule it out

    Check the symptoms of EDS at this link:
    http://forum.notcrazy.net/index.php?topic=9571.0


    Good luck,

    Ally
  7. bertiedog

    bertiedog Senior Member

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    Hi Ally

    Firstly there is no smell to the device at all when using it or not. It is made of plastic, actually the one side piece of mine was very loose when it arrived, should really have sent it back but it is the holder for one of the batteries so I figured if necessary I could put a piece of sticky tape round it. It doesn't affect the way it works.

    I haven't used any extra gel with it but I guess you could try this to prolong the life of the pad. I just have been really careful at putting it away every time I have used it.

    I also have to say I have had a breakthrough migraine type head this morning. It started as soon as I woke around 7.20 am and so I had a bit of something to eat and a cup of tea and then made the mistake of using the wrong programme. Wasn't thinking straight but I used programme 2 which isn't meant for an actual attack but to desensitise. n You are supposed to use this programme twice daily at first to help build up some resistence.

    It didn't really work so after breakfast I used the number 1 programme which is the one to stop an attack. Before using it I took a paracetemol with caffeine and one liquid neurofen and ran through programme 1 twice which took 40 minutes. (I found I was quite bad tempered during the second round).

    The pain is now very mild and quite distant so will see how things go and report back. I could feel pain starting to build in my neck and left shoulder so knew I should take the symptoms seriously or I would end up with a day-long migraine.

    I really didn't want to take any painkillers because its been a week since I have taken anything but then realised I was being stupid so glad I did take the painkillers.

    Pam
  8. Aileen

    Aileen Senior Member

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    Thanks Pam. Please update us on your progress after you have been using it for a while. I hope you can permanently banish them!! :ninja:
  9. bertiedog

    bertiedog Senior Member

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    Hi Aileen

    Well it did get the attack on Saturday under control. Didn't need anymore painkillers but I could still feel a touch of pain in my left temple till late afternoon. I went for a walk with my dog and that got rid of it.

    Yesterday was fine though I had poor energy because I had done quite a bit of walking on the Saturday. Slept really badly last night and probably had low cortisol through the night so woke with a REAL typical migraine starting. Pain already there in my right shoulder and temple.

    Knew I needed all my painkillers for this one so had one paracetemol with caffeine, one liquid Neurofen and 50mg Sumatriptan. Used the Cefaly this time on the correct programme and after 20 minutes a big improvement. Still a residue there so have just used the program again to control an attack. Can still feel a bit of pain in my right temple but neck and shoulder pain appear to have gone and I feel ok in myself.

    Will take things easy this morning but want to try and do some typing plus a bit of hoovering but especially important to pace myself, I don't want to push my luck.

    Will probably use it again after lunch and again this evening if necessary.

    Today is a real test I feel.

    Pam
  10. carolo

    carolo

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    Hi everyone-

    I received my Cepfaly device last night and used it for the first time this morning. I was really apprehensive because I developed bad tinnitus from the migraine meds about 10 weeks ago and was afraid it might make it worse. I have the device that only has one setting, for prevention I believe. I used to have daily migraines but due to a change in diet and some natural supplements they are now once a week almost like clock work. I have not been able to figure out why they occur every 6-7 days. I take ergotamine and used to take Immitrex shots but since the tinnitus started I have been avoiding it as the Cafergot works well.

    It says that it should start out with you feeling nothing and then the sensation intensifies. Well after one second I felt the sensation and it was pretty uncomfortable so I immediately pressed the button to hold the intensity to that level. At that level I felt almost nothing after a few minutes and keptit on for 20 minutes. I will try it daily and report back

    Its hard to tell but I think the tinnitus might be a little worse, not sure.

    Has anyone else developed tinnitus from the medication? It's maddening.

    Best,

    Carol
  11. Ema

    Ema Senior Member

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    Does the sensation hurt? Or just feel odd? I tend to panic which would sort of defeat the purpose I think...but I'd love to have a nice soft neck and get rid of the golf ball lumps in my shoulders.
  12. carolo

    carolo

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    I have used a tens device before and I know that the sensation feels like. It feels like little needles. This is what the sensation feels like. I was just a little surprised because it says in the brochure that at first you would feel nothing and then the intensity builds but I felt it immediately and did not want to let it get more itense so you simply press the button on the device and that stops the intensity from getting stronger.
  13. bertiedog

    bertiedog Senior Member

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    Hi Carole

    Sometimes I can feel it straight away and at others it takes a short time to feel anything. Most times I use it at the most intense without any problems but it is true to say that on occasions it has been too painful to bear but I think this is when the pads are wearing out.

    My situation has been complicated by the fact that I think I have developed medication overuse syndrome causing almost daily migraines for which I was taking medication so two weeks ago I went to my GP and talked to her about this and she has given me Naproxen to take when necessary and said for me not to use Imigrane on more than 2 days maximum each week.

    Since then I haven't had a full blown migraine the Naproxen has helped and on one occasion I have taken 50 mg Imigran. What allowed me to get to this stage was 2 Acupuncture treatments with this great Chinese doctor I see that stopped the migraines so I didn't miss the fact I wasn't to take any paracetemol, caffeine or codeine or excess Imigran.

    I still find the Cefaly helpful especially if I feel any pain developing but over time it didn't stop the bad migraines from starting but it will stop mild headaches from developing.

    Since I have had the Cefaly for 3 months I now only use it if I think I need it.

    I should say that I don't react to too many things. I used to but since my adrenals and thyroid have been treated for over 12 years I am lucky in that I lost extreme sensitivities to things.

    Pam
  14. Allyson

    Allyson *****

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    I notice they are using botox injected into nerve pathways in face and neck to help with Migraines now

    Ally
  15. bertiedog

    bertiedog Senior Member

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    @Allyson Yes I have read that too but with a very poor immune system that cannot deal with ordinary viruses and infections I think the last thing I would want is Botox going into my body! LOL (Wouldn't mind the lack of wrinkles though).

    Pam
  16. Ema

    Ema Senior Member

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    I think Botox would be pretty safe since there is no live bacteria.

    But there isn't a lot of data, so it's definitely a personal choice.
  17. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    I've heard of one ME patient who tried botox for migraines and had a really bad reaction. Sorry, don't remember the details, but she regretted it.

    Sushi
  18. Ema

    Ema Senior Member

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    I think that can happen to anyone, really. I know a few healthy people who have had adverse reactions to Botox and regretted doing it.

    I'm not sure the risk is any greater in our population though it's hard to know since I'm sure it hasn't been studied. It doesn't list immunocompromised as a contraindication in the patient literature though.

    And for as bad as my chronic migraines are, I am seriously considering taking the risk!
  19. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    I used to have chronic, frequent migraines. They stopped completely when I did gut treatments.

    Sushi
  20. bertiedog

    bertiedog Senior Member

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    I can understand that @Ema mine have been horrendous over the last few years, way more frequent than they used to be, hence buying the Cefaly. But it was only just over 2 weeks ago when I started to think I could have medication overuse problem and talked to my GP about this.

    Its still too early to say but it does look like it could be playing a part because today was the first nasty migraine for over 2 weeks. I have had a throat infection since last Friday and have been feel really unwell so yesterday I realised I was getting worse and needed antibiotics and started Azithromycin. I always react badly to abx and slept horribly last night so wasn't a bit surprised that as soon as I got up I could feel a migraine building.

    Had to take more migraine medication this morning and used the Cefaly twice and did manage to get pain free by lunchtime but still feeling not right in my head, lots of pressure but not actual pain. Probably won't feel a lot better until I finish the Azithro at the end of the week.

    I am steroid dependent and it so often feels to me that the antibiotics interfere with the steroids and they become less effective so I run into all sorts of trouble. I notice my blood sugar gets a lot worse, my legs have little energy in them and I sleep worse, all things that usually aren't too much of a problem when not on abx as long as I don't overdo it.

    Pam

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