Chronic Migraine help : Hi, I've tried... - National Migraine...

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Chronic Migraine help

Louie_Rgg
Louie_Rgg

Hi, I've tried what feels like everything for my chronic migraines. Botox, Topimax has not worked and just had nerve blocks (front of face) but have not felt any relief. Its only been a week. I've also been doing the Watson Headache technique but have had no relief. Any suggestions? I have a headache everyday and bad migraines more than 15 days a month...feeling at the end of my tether! #migraine #botox #chronic

24 Replies
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HI, is there any history of autoimmune disease in your family? Past or present members, also heart attacks or strokes at an early age. or if female, miscarriages? If any of this sounds familiar come back to me, as I have an autoimmune disease which causes migraines, better since I have been treated. MaryF

Louie_Rgg
Louie_Rgg in reply to MaryF

Hi there. Thanks for the suggestions - I had very bad glandular fever when I was younger and feel like my immune system has never fully recovered but other than that no automimmune diseases in the family. Can I ask what treatment you have had?

MaryF
MaryF in reply to Louie_Rgg

HI, I have Hughes Syndrome/APS, otherwise known as Sticky Blood or Antiphospholipid Syndrome, I enclose the charity website which contains the symptoms. I am on Aspirin at the moment, guided by my main consultant. ghic.world/hughes-syndrome/

MaryF

I am with you so you have my sympathy. The first thing I will ask is how often do you take triptans and what preventatives are you on now...?

Louie_Rgg
Louie_Rgg in reply to Oolong

Thanks Oolong. I COULD take a triptan everyday (Maxalt as immigran, naramig and relpax didn't work) but I do try and keep it to 10 times a month. I use panadeine forte/nurofen/paracetomol to manage the pain otherwise. I am currently on gabapentin (200mg 3 times a day). That is my only preventative. I just got nerve blocks done but they haven't helped.

Calm_mama
Calm_mama in reply to Louie_Rgg

Hi Louie,

How often are you taking the non-triptan rescue meds (panadeine forte/nurofen/paracetomol)?

And are you seeing a headache specialist or neurologist?

Louie_Rgg
Louie_Rgg in reply to Calm_mama

Hi calm mama, I’m taking triptanes 15 days a month. Was seeing a neurologist but he only wanted to treat me with Botox (which didnt work) so I’m now seeing a pain specialist

Calm_mama
Calm_mama in reply to Louie_Rgg

Oh good (the pain specialist!)

See if you can limit the rescue meds you are using. They're only supposed to be used 2X /week max so as not to cause rebound headache unless your doc has told you otherwise.

Are you on Vitamin B2 and Magnesium? If not, talk to your doc. These are considered foundational for migraine sufferers and some people get rid of their migraines exclusively with these supplements.

Preventives - So you are on Gabapentin. What about other preventives tried? They are often tried in this order (classes) but not always: Beta Blocker (like Propranolol), Antidepressant (like Elavil (amitriptyline)), Other Blood pressure meds (Calcium Channel Blockers, ACE Inhibitors), Antihistamines (like Benedryl), Anti-nausea meds (like Compazine), anti-seizure meds (you are on one, Gabapentin but others are tried too sometimes). Sometimes Reglan is used (different class altogether). There are others! Sometimes a combo of 2 preventives do the trick. Nerve Blocks and DHE or thorazine infusions are often used to try to break the pain cycle. If none of the preventives work after a good trial (and it takes awhile with dose adjustments etc - several months), people then often get moved on to Botox or CGRP inhibitors. New class - Aimovig, Anjovy. Once/mo injections usually. Some folks are getting fantastic relief with these. Sometimes those are introduced sooner in the treatment plan. Another drug now being used both as preventive and rescue is Ketamine Nasal. Ketamine infusions are sometimes done these days. CBD! Some people are using CBD oil with good relief.

Then there's all the trigger prevention/supportive lifestyle: good schedule with sleep/wake times kept the same. No heavy backpacks. Blue filter glasses for computers/phones. Avoid alcohol and drugs. Avoid caffeine. Excellent posture. Massage.

Then there's all the non-medical approaches: Biofeedback, neurofeedback, osteopath, chiropractor, accupuncture, accupressure, TMS, etc

Then there's the food sensitivity component for some people: Maybe try some elimination diets to see if your headaches improve off Dairy, Gluten, etc

Mental healthcare: Treating any underlying anxiety or depression can do wonders for migraine

Lastly I have mixed feelings about it but I know some people are getting relief with Marijauna in low doses!

It's usually a combo of things that helps people bring their pain down to a manageable level or even eliminate it completely. I strongly believe in pain clinics:) you will learn a lot there about migraine and pain!

I second the suggestion to get onto a closed FB migraine support group- TONS of support and info there.

DON'T GIVE UP- lots of good things out there to give a chance! Good luck Louie!

Calm_mama
Calm_mama in reply to Calm_mama

Sorry just read through all the posts- re Aimovig and cost. If you qualify for patient assistance program you could get it that way?

amgensafetynetfoundation.co...

There's probably a patient assist program for Anjovy as well?

Louie_Rgg
Louie_Rgg in reply to Calm_mama

Calm_mama you're the best thank you SO much. Your information has made me feel better and I'm going to take it up with my pain specialist :)

Oolong
Oolong in reply to Louie_Rgg

Oh I am so sorry. I am in a similar situation. I wish I could offer a solution but all I can offer is support. Hang in there as things do change. I think mine are so bad now as I am 53 and must be approaching menopause. I am hoping that once that is over they will improve. I have had them all my life and the bad phases come and go. I hope yours goes soon. Sending hugs xx PS I presume you have found the migraine trust web site, there is also a fantastic FB group Chronic Migraine UK where people are so helpful and there is a lot of information on there xx

Louie_Rgg
Louie_Rgg in reply to Oolong

Thanks for your kindness Oolong. Have you ever found anything that works?? In terms of a preventative or other treatment? I’m open to anything at this point xx

Oolong
Oolong in reply to Louie_Rgg

Unfortunately not. I am now looking at lifestyle factors. The only preventatives I have not tried are propranolol and calcium channel blockers. Others worked for a while but never for long. What about the CGRP - if you live in Scotland it is available up there but not down here! :( xx

Have you considered Aimovig?

Yes but it’s not on PBS in Australia so would cost me $700 a month :(

I was like this. Have you had mri and blood tests?? All mine were clear. I looked at Stanton migraine protocol. It was hard but i started with increasing water; taking magnesium; balancing salt and potassium. I am much better I was taking a trip tan every day

That’s a good point I think I need an MRI. What is the headache technique? I’m taking lots of vitamins

It’s called the Stanton migraine protocol

Aimovig has been a miracle for me. I used to take 18 triptan a month. Now I take two. My chronic migraine is gone. I only now have to deal with menstrual migraine.

I’m so pleased for you! It’s not on the PBS in Australia so will cost me $700 a month :( can I ask what’s involved in aimovig? How often do you take it?

I give myself one injection per month. It's $500 per shot here, applied toward my insurance deductible. They do have a program where you can pay a $25 copay each month until they have paid out $2500. So that's about five shots. If I couldn't handle paying thru my insurance, five shots would be better than none.

No side effects at all for me. My chronic tension headaches are caused by minor scoliosis that results in constant muscle fatigue and nerve overload in my shoulders, neck and head. Aimovig has improved even the tension headaches, and they no longer turn into migraine (unless I were to ignore them too long. I take acetamenophin (sp?+ caffeine (generic aspirin-free Excedrin). The menstrual migraine still occurs, but less quickly and less severe and now they will respond to my triptan where before they wouldn't.

I hope Aimovig becomes available to you soon. Best of luck finding relief.

Hi, I may able to help you, I once got migraine too, now it's gone, I cured it myself, no medicine needed, I have experiences, you may contact me if you need some suggestions to prevent the migraine.

Hi there. Wow thats amazing - how did you do it? It would be great if you could post on here so other sufferer's can read too :)

Hi,there,first, you have to find out the triggers of your migraine, difference people may be different, in common, foods, drinks, exercise, medications, stress, too much or too little sleep, bright lights, hunger, smells, and hormones, etc. Figure out what brings yours on, then check any possible triggers at the first signs of a headache. Here is the check list, check it carefully, and avoid all those triggers may cause you migraine, you may reduce 90% of Migraine, even may be not cause a single for a year.

Migraine Trigger Checklist

_____ Aged cheeses

_____ Alcohol (red wine, beer, whiskey, champagne)

_____ Artificial sweeteners

_____ Caffeine (getting too much or withdrawal)

_____ Chocolate

_____ Citrus fruits

_____ Cured meats

_____ Dehydration

_____ Depression

_____ Dried fish

_____ Dried fruits

_____ Exercise (too much)

_____ Eyestrain or other visual triggers

_____ Fatigue (extreme)

_____ Food additives (nitrites, nitrates, MSG)

_____ Lights (bright or flickering; sunlight, particularly glare)

_____ Lunch meats (cured with nitrites or MSG)

_____ Menstrual periods

_____ Medications

_____ Noise (too much)

_____ Nuts

_____ Odors

_____ Onions

_____ Salty foods

_____ Sleep (too much, too little, other changes)

_____ Skipped meals

_____ Stress

_____ Watching TV or movies

_____ Weather (changing conditions)

_____ Others

Of cause, there are other traditional Chinese medicine methods I used could prevent or relief the pain of migraine which cured me forever, I am migraine free for several years already, we can talk about it later.

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