Constant Migraine with Aura, what else can I try?

[TM28BSH]

Hi,

I started having migraines April 2016 and they became constant August 2016. For the first few months I was in agony and didn’t leave my pitch black room, I also have to move back in with my parents.

I have come a long way since then(am now able to live on my own!) but I still struggle with noise/lights so going for a meals or something is pretty tough. I can now go on short walks but there is no way I can go back to work yet. For me the Aura is constant and fluctuating, at its worst I can barely see, feel disorientated and dizzy and can’t think straight. I have other symptoms such as nausea, light and sound sensitivity, headaches and speech and memory problems.

Does anyone have any advice over what else I can try??

So far I have tried Gabapentin, Topiramate, Naproxen, Amytriptaline and Nortryptaline all to no avail. I am currently taking pretty high doses of Propranolol and Lamotrigine which seem to be working some. I also had a nerve block and am currently waiting for Botox.

I have tried a Chiropractor, Acupuncture and the Daith piercing which didn’t work. I am on a very restrictive diet (no gluten, wheat, dairy, cheese, soy, sugar, caffeine amoung other things) which I don’t think much although I am certainly a lot healthier which can only be good. I also go to counselling which I think is one of the best things I have done as my counsellor is also an experienced migraneur.

Thanks

[juliep77]

I’ve been havein Botox for 2 years now the first 2 didn’t help much but now it does I have Botox every 3 months 48 injections in my head neck shoulders I’ve gone from 15 Migraines s month to 3-4 s month I tryed every tablet goin but wasn’t workin if u got the opportunity to have Botox I would Highly recommend it x

[jackiesutton62]

Hi I was like you I’d tried nearly everything. I’ve had chronic migraine for a long time and migraine generally for 37 years. Nothing helped. I’ve had 5 lots of Botox and got relief from the first set. For about a week my neck is stiff and sore but ice gel muscle rub really helps. After that I have weeks free of pain and if I do get a headache usually paracetamol will help or worst case sumatriptan takes it away.

I’ve gone from 20-24 a month to 6-8. The latest round has been less successful but this can happen and I’m hopeful when I get my next Botox in 2 weeks I’ll be back to 6-8 a month.

Really give it a try. It’s worth it. Good luck Jackie x

[Golf-Ski]

I, too tried many different cocktails of medication until my doctor and I found one that worked. I started having daily migraines due to perimenopause and my raging fluctuation of hormones when I turned 50. I am 54 now and still waiting for hormones to calm down! In the meantime , I take 20 mg of Propranolol in morning and 10 mg of Amytriptyline in evening. It still works after 4 years on it🤞Before we found that I spent basically 3 months more or less in bed with ice around my head and had lost 3 pounds because I was nauseated and couldn’t eat! Praying for menopause and end of raging hormones; as the neurologist at migraine clinic thinks migraines should go away when I hit menopause, as I had never had migraines before 50, so 🙏🙏 Good luck, I get how painful it is! Before I found this god sent treatment, I was taking 2 Excedrin migraine in morning and it worked better than anything else I had tried but hard on stomach, so my doctor had prescribed something to protect my stomach. You are not supposed to take Excedrin migraine everyday for that reason, very hard on stomach. They are not meant for everyday use, but it helped ne survive for 6 weeks. I live in Canada and they are not available here so a friend sent them to me from the states. They are a mixture of: caffeine, Tylenol and aspirin.

[Pinkcat21 in reply to Golf-Ski]

I really feel for you, I never had migraines before 50 either, I am getting just the auras (sometimes a little brow pain) although I was going into menopause I had my ovaries out due to family history, I was hoping everything would have calmed down two years on but this is when I got the silent migraines.

[Gaysie]

Have you see a neurologist to see if he/she can help you or had some test done. I use Maxalt which melt on your tongue they are fantastic. Not sure you have them where u live.

[babs1234]

Ask to be referred to a headache specialist and request to go on the Gammacore trial. Definitely worth a try

[Hidden]

Hi so it has been a while since I posted anything.

It has been 14 months sinxe I started my botox treatments and it has been a roller coaster ride.

So my 1st neurologist diagnosedme incorrectlyand after months of no improvement my 2nd neurologist has diagnosed my migraines coming from problems in my neck. I am now seeing a pain doctor and had some facet joint surgery and pain blocks as well. Has not worked at all.

Had botox last Wednesday and my dr put most of the injections in base of my skull and neck and shoulders.

Have had much more relief than in 14 months.

So will see pain doctor and sdvise him of progress and hope he will do more surgery.

I cant tell you how over all of this I am and have a started on anti depressants.

I am no longer the person I was before and has been so gard on our marriage.

I have found that some friends really have no idea of what I go thru mentally or physically.

I have always been so positive but am slowly losing the fight. Hoping that this is the turn around I need.

I too have tried all natural therapies and other top drugs to no avail and even tried medicinal cannabis illegally which has helped with the pain but not in stopping the migraines.I would give anything to be free of this, but each day I get up and push thru hoping for some relief.

[KatherineM_PBC in reply to Hidden]

Hi whitey, reading your post, I was feeling pretty much the same a month ago, going through a patch of constant head pain. I booked an appt at the Surrey Headache Clinic which happens to be near me, but there are other Migraine Centres in the UK and I would advise you book yourself an appt. I started on Amitryptaline with their support and have worked my way up very slowly to 30mg - I'm not completely headache free but I'm having good days and I can socialise a bit and not worry about work. You say you have started on anti-depressants, if they can give you Ami, they work for anxiety and depression as well as relieving the pain of muscular skeletal problems.

I have 1 close friend who has been very understanding but others don't get how you can have a headache every day for nearly 10 months! I don't think my partner gets it either; try talking to your husband and ask for his support whilst you go through this bad patch, perhaps if you lift the burden of worrying about how this is affecting him and your marriage that will help?

I've been reading about the Stanton Protocol online - there is a Facebook Group you can join. It's a very precise process to follow, many people swear it's revolutionised their lives. Maybe have a look, start by upping water intake and cutting back carbs and sugar - the worst thing to have for breakfast is porridge with fruit/berries which I was having every day. I've learnt it's not just OK to go gluten free but grain free too but not sure how I'm going to get on with that!

Really hope you find a solution soon. xx

[KatherineM_PBC]

Hi TM28BSH

You must feel overwhelmed, having the constant headaches and dizziness, this sounds more than migraine? Of all the things you mentioned you haven't said if you have been referred to any specialist and had head scans? If you cannot get anything on the NHS (assuming you're in UK) I again recommend a Headache Clinic/Migraine Centre. I was troubled by constant aura in-between my migraines but this has gone now - I take 75mg daily soluble Aspirin which I believe did the trick (but don't self medicate before you get advice)

You mention constant dizziness, I had this when I upped my dose of Amitrytaline too fast, it's because of low blood pressure. What dose of Amitryptaline and Notryptaline did you take, did you start on a v low dose and build up gradually, I was even breaking pills in half so I could increase by 5mg every 10 days - I know we all want fast results but increasing these medications too fast will cause dizziness etc. You need to start on 10mg daily, there are many people on here that say they didn't get on with Ami as they were started on 25mg etc!

What painkillers are you taking, you might be causing a 'rebound' situation? You definitely need more support and advice. Even diet; whilst we are desperate to do the right thing, there is no point denying yourself foods if they are not triggers. I'm reading (Stanton Protocol) that for some, giving up gluten is not enough, for example gluten substitutes in food often have more carbs and sugar than their non GF alternatives (look at porridge oats for example).

I so wish you well and hope you find some answers soon - keep on messaging here and insist on more medical help from your GP. What happened in April 2016 that might have triggered the first attack, an accident or stressful time, see if you can find the cause as medicines just treat the symptoms, and sometimes not that well either. x