SpringTMS

[Pattipan]

I don't think I've seen anything about this magnetic therapy for migraine on this site. Has anyone used it? If not, it's basically a magnetic charge delivered to the back of the head using a (very heavy) but portable machine. (If you're interested, there is info on it on the Internet).

I'd had Botox three times in 2014 which enabled me to reduce my intake of Zomig from around 20 a month to four or fewer, which has been very beneficial. I'm still prone to headaches but always try other things first now - food, water, paracetamol and quite often they just go off on their own (either early on or after about 10 - 12 hours of fairly bearable pain) - thus proving I guess, that I had been assuming my "normal" headaches were migraines and treating them unnecessarily.

However, I've recently been diagnosed with a recurrence of cancer that I'd been in remission from since 2008 and in discussion with my Neurologist concluded I didn't really want to zap my body with any more poisons on top of weekly chemo.

He prescribed SpringTMS and I duly received the kit on a 3 month free trial. I'm about 2/3 through the first month. The nurse from the supplier/manufacturer advising me (by phone) suggested I use it prophylactically for a month, which basically means 4 magnetic pulses in the morning and 4 in the evening. I've tried to keep to this but sometimes haven't managed it. It's actually quite a loud bang just behind your ears, which isn't great if it does coincide with a migraine (or even a headache). It doesn't seem to be making any difference to the headaches, except that when I have had a bad head lately, the pain has really been focussed at the base of my skull, right where I'm zapping! It certainly hasn't made the pain diminish or disappear.

So this is a cross between a post, describing my own experience and a question, wondering if anyone else has any longer term experience of using this equipment. If it works, it can be supplied via the NHS, otherwise I believe it's £450 for 3 months, which I can't afford.

[Frodo]

Sorry to hear of your illness. I don't have anything very helpful to say, but was interested in your experience of the device because several years ago I read they were trialling this at a local headache clinic (which I didn't know about and the GP had not told me about) and was very excited, as medication makes me ill, tried to get referred but they wouldn't take me, tried to get it via GP but eventually got the information that until I had tried at least four prophylactics for a period of at least three months each I wasn't eligible for it. So eventually I had to give up.

It doesn't sound very easy to use, but maybe it will take the full three months to begin to work? I tend to think migraine has different causes and/or ways of manifesting in different people and that's why no one thing works for everyone, but I suppose it's worth giving it a good go. There's also the Cephaly device which I haven't tried that sounds a bit similar, but you put it on your head like headphones so perhaps more user friendly.

[lcb10]

Hi. I didn't know that portable TMS machines were now being made available and sent to peoples' homes, and even through the NHS. I'd been thinking of TMS, because I suffer not only from chronic migraine, but also CFS and other serious neurological conditions, mostly cognitive and movement based. (For example, low to very low consciousness and concentration ability, most of the time). I believe TMS may be used for these also.

I was thinking of asking a doctor in the NHS about this. It was the last specialist I saw, a neuro-psychologist, who raised the treatment in discussion - I think he said a discussion to aid awareness of possibilities of treatment. Which I think means it does not necessarily follow I'd be likely to receive the treatment.

However, I still didn't know it was portable from my own research and had thought this would involve going to some clinic in Switzerland or somewhere. But now I think back, with my terrible neuro-memory problems, I do now remember he said the word portable. I thought he may be talking about something else at the time, though, because I'd read the descriptions of the big machines and how that there wasn't even one centre in the UK which had one.

This is a major development. I'd be very interested.

Do you know anything about side-effects or possible harm from this? I joined an online migraine group recently which is focussed on the findings that nearly all drugs prescribed for migraine will harm and make most sufferers worse in the long run. The advice has been to get off preventative drugs if you are on them. So, I haven't been on a preventative for some time, but had been naturally thinking of going back on one, before that group. Now I'm very wary. I've had no long term success with about 4 or 5 different preventatives, so I think in my position, the GP's and neurologist's opinion is probably not to try that again, at least for a couple of years or if I really beg for it.

(The last drug I begged for was an SSRI and I do regret it, while it was nice at the time, during a short-ish course. My fault, again. Another preventative - or 2 at the same time - had been doing well but my previous neurologist warned me that was likely to stop soon and the main drug was problematic - Pizotifen. However I couldn't believe him because I thought I was getting much better. I thought he wouldn't be saying that if he were in my position. He did say "you probably think you're getting much better". So I was warned, and I did get better still, but after not long got much, much worse. And continued to, even after I came of the drug.)

I'm really wary of any preventative now, if I take time to think about it. With low consciousness, I might, though, not really be thinking about it much. And after a few weeks of semi-comatic kind of migraine, fog and fatigue start to ask about a preventative again.

I hope not. I'd much rather try this portable TMS if it's possible.

If I can't try this under the NHS - do you mean £450 to rent for a while (how long - a few months)? Or, surely not, £450 to purchase? That would be significantly inexpensive for a major, new medical device. The little Cefaly pulse device is around half that price, I think.

I'm still thinking of the TMS machines as huge things which the UK didn't even have in a clinic at least recently. So, if one could come by a home portable version for £450, that would be great. (Still, I'm imagining that must be a rental cost). Better to test it first through the health service, if they offer it.

I'm really intrigued as to how you get on, Pattipan.

Especially for

- side effects

- slow improvement, if any.

Perhaps the pain in the base of the head might be the start of an improvement in migraine? is it too sore to continue with?

[skullsandponies]

Hi Pattipan - I'm so sorry to hear your cancer has come back - and that you have to battle that and migraine. That really does seem incredibly unfair

A friend of mine uses the TMS as triptans don't work for her in aborting migraine. She uses it if she feels one coming on and she's been using it for several years now and said it did make a difference for her but I think it took a while to build up the prophylactic effect.

I've tried out the TMS myself as I wanted to see what it was like - and you are right, it's not very pleasant especially if you have a migraine! So I'm not surprised you don't want to have to do it if you are having a pain day!

How long have you been using it for now? Did your neuro suggest how long to persevere for?

I really hope it helps and best of luck with the chemo.

[Qwan]

Sorry to hear about the cancer returning and best of luck with your treatment.

TMS doesn't sound like the most pleasant thing but hopefully over time it'll make a more lasting effect so you'd have less migraines the initial banging feeling impacts on?

Is it possible to ring back the manufacture nurse for more information on duration for optimum effect?

Would you say your head pain is now focused in the one spot where the magnet thing effects it, rather than widespread, or is that just an additional pain on top right now? :/

Interesting what you mention about 'normal headaches' vs migraines. When you have them chronically it's hard to know what is what strangely.

Again best of luck and keep us posted *sends positive vibes and spoons*

[lcb10]

I'm really interested to learn any updates in your situation , Pattipan. I hope you're not too bad or that there might be some prospect of help in any way for you.

Also, as Pattigan is, I'm really interested to hear if anyone else has had experiences with TMS.

[Pattipan]

I thought it was high time I updated this post. Basically, my experience with the machine was not a positive one and in fact I just had to stop using it after less than a month of daily prophylactic zaps as they were causing me so much pain, localised on where I had been administering them at the base of my skull. They did absolutely nothing to reduce the intensity or frequency of headaches and sometimes my head was just too sore to be able to bear to use the thing!

To be honest, I have often experienced pain in the base of my skull (during a migraine or "just" a headache) ever since I had (unsuccessful) GON injections back in January 2013 and I also started my chemo treatment halfway through the prophylactic month (May 2015), so maybe my experiences aren't typical.

The excruciating headaches continue to wake me up some mornings between 4am and 6am, but I've found a series of coping strategies which are much less invasive than my usual resort to Zomig. These start off with a couple of paracetamol and a biscuit and water. I may also take take 1 @ 10mg Motilium (Domperidone) if queasy (prescribed for chemo queasiness, which it might be). I also sit up in bed as there seems to be a postural element and I wrap a microwaved wheat bag in a long thin scarf and apply that to my neck. Finally, after maybe dozing for a while, the final resort is a shower, where hot water on back of neck and forehead, alternately, has finally cleared this pesky pain the last three times it happened. To be honest, having no hair is actually a bonus for this part of the treatment!

So, after a lengthy telephone discussion with (interrogation by) my SpringTMS nurse, I sent it back in early June. I now need to ensure my Neurologist knows it didn't work for me as I believe he is trialling their use.

Incidentally, many thanks to those who have expressed sympathy for my cancer recurrence. The good news is it seems to be responding well to treatment and I can usually pace myself and know when to just chill out, and when I can dash round like a mad thing trying to "carpe diem". My frequent low white blood cell count is the chief worry at the hospital, but chief inconveniences for me are ones I've always had - headaches, nosebleeds and Tachycardia! I'm nearly half way through the anticipated 6 cycles and I'm aware the effects may get worse, but so far, so good.

Hope some of the above may be useful! Best wishes to all, Patti