Spinal cord stimulation

[195fifi]

I live in Ireland and saw a pain specialist as I have run out of options to treat my chronic refractory migraines. He is going to implant a spinal cord stimulation as he said it should me a lot and give me a better quality of life. He is the best pain doctor in Ireland and I had to wait 6 months to see him. I am very nervous about the surgery. Has anyone in UK or Ireland had this operation and did it help migraine pain. Is operation painful and is recovery time very long. I would be very thankful for any replies. 195fifi

[Onthemove1971]

I am sure that you have been asked this a lot and it some what applies to this post.

It sounds like you have spine pain and that might be why you get migraines?

Have you tried a TENS machine? You apply small sticker to your skin and att h wires. You then can turn on a small machine that sends electrical signs to an area. They are sold in the US over the counter. They are cheap, maybe try this first?

Also what preventative have to tried for the migraines?

[195fifi in reply to Onthemove1971]

Yes I have tried a tens machine and my neurologist has run out of options. I reacted very badly to all the medications i tried and also aimovig and ajovy with side effects that I will have for life. All inpatients hospital treatments failed as well.My 95 year old Mother died very suddenly in 2018. I had being her carer for 8 years and my brother retired early to help me.My migraines just went through the roof then. I have pain from my head to my toes and my doctor said i feel pain where there is no pain as the migraines are so bad. I take triptans 8 days per month, but I only get relief for 2 hours. I will be 69 next month and have migraines since I was 12 years old ,but nobody would believe till I went to Martin 12 years ago and he said I have chronic migraine.It is on both sides of my family.I will not see Martin for another month, so I do not know what he would about the surgery. It would block the pain signals to my brain so I would be pain free. In Ireland we are way behind with treatments available in US. Dr David Dodick at the Mayo Clinic seems a wonderful doctor. He said he has never cured a patient, but he has given them all a better quality of life. He never gives up on a patient. Dr Stewart Tepper is very good too. I listen to the migraine summit every year . Paula and Carl are doing great work for people with migraine.I used to go to London to see Prof Peter Goadsby at Kings College, but when covid arrived that stopped. Many thanks for your reply. 195fifi

[Onthemove1971 in reply to 195fifi]

Have you tried magnesium? High doses?

Also have you listened to the

Headsup-Heads up.. podcast?

[195fifi]

yes I listen to the podcasts and I took magnesium for 3 months.195fifi

[Onthemove1971 in reply to 195fifi]

Just curious how often and what brand?If it is not a certain brand and at high doses it will not help.

[Onthemove1971]

please update us on how it goes. Thanks wishing you well!

[Headache123]

Hi

I’m so sorry to hear of your constant nightmare Pain

I am in a very similar situation and have been through all the treatments also and have been messed up by Aimovig.

My pain consultant wants to give me injections in the spine and neck and I am very nervous also

Have you had any responses regarding these steroid injections as I would love to hear from people who have had it and if it has helped

Many thanks

[Blearyeyed]

Have you had your SCS yet?Has it helped pain at all , either Migraine or elsewhere?

I assume you had a test period first when it wasn't permanently inserted but in an outer box to see if it was worth continuing.

Did you get a rechargeable version or one that will need replacing in time.

I hope things went well for you , if you have time or feel up to it perhaps you could share your experience in a post , whether it was good or bad , or in the middle , I'm sure it would be really appreciated by others like myself whom are considering going through the battle to try it on the NHS

Take care , Bee

[195fifi in reply to Blearyeyed]

my neurologist was not happy for me to have SCS. I did not go ahead with it. I am waiting since January to get Vyepti infusion.The HSE have only approved it now and then Lundbeck had to get private health Insurance to agree to pay for it. Because I will be 70 in October I have to get it through my insurance. HSE will only cover people up to 65.It will take 8 weeks to get everything set up. I will have to stay half a day in the hospital in case I have a bad reaction. I have to pay my doctor 180 Euro per visit.He gave me a script for 8 rimegepant (Nurtec)a few months ago. They made me feel very sick and a terrible pain in my stomach, so I had to stop them. Vyepti is my only hope now, but I did not respond to any of the CGRPS.I have had a couple of falls ,so I know have to see a surgeon in case I damaged my knee with the TKR.I am in a lot of pain from my head to my feet. I asked on facebook did anyone have SCS for migraine here in Ireland ,also UK and USA. I got no replies.Most people had it for back and leg pain .Sorry I did not reply sooner. Hope your pain has eased a little . 195fifi.