Severe Basilar Migraine.. What do I try next?!

[Meguinn]

Hi there.. Ive been following and considering posting on here for a while now.. So here it is!

I've been suffering for chronic, severe basilar migraine for a couple years now. Most days I'm completely debilitated, with the worst symptoms being vertigo and moving/blurry vision.

Almost everything including food seems to trigger an attack. I've been following a strict migraine diet for about a month now. I finally just eliminated all nuts and seeds (other than amaranth and quinoa and some sesame seeds) and condiments (other than coconut oil and olive oil and small amounts of lemon/lime juice), and I saw improvement (less vertigo attacks). Caffiene, heavy alcohol consumption, humid weather, overactivity, anxiety, hormones, and prolonged reading are definitely triggers.

I'm on Propranalol (20mg three times a day), Migranon (butterbur - 75 mg twice a day), Rehmannia, Vitamin D (1000IU twice a day), iron, Zoloft (50mg per day), fish oils, probiotics, multivitamin, and melatonin (3mg some nights). As well as ibuprofen and acetaminophen pretty much daily.

The neurologist I just saw recommended amitriptylines if the increase in propanalol doesn't help. Is this the next option? Is there something I'm missing here? I would love to hear your food triggers, etc if there's something I haven't mentioned. I'm also very willing to try more herbs or supplements if there's something that works for you.

Thank you!! I'm so looking forward to your advice!

Meg

[Cally01]

Hi Meg 😆 welcome... I get aura which last 20-25mins and if i take sumatriptan as soon as it happens it lessons the impact. I can get wiped out for 3 to 4 days then feel exausted, like I've gone 10 rounds with tyson!!

I am affected by weather, sunlight, all cheese, chocolate and all citrus fruits/drinks. I avoid aspertame which is in ap lot of diluting juice/ sugar substitutes. Hormones.

I avoid caffeine and don't eat any sauces from jars ( make my own , that way i know whats in it). I do breathing excersises and take magnesium, B2, B12 ,Vit C and D.

I get 2 types of migraine and suffered multiple daily for 19mths. I'm dealing with the other ones as they are coming from my jaw ( think I'm getting there, not daily for past 10 days😆).

It's a mine field but your in the right place 😆.

[Meguinn in reply to Cally01]

Hi Cally,

Thank you for the support.. It's good to hear I'm on the right track at least.

When you say you get two types of migraine, which kinds do you get?

I also have TMJ issues so what are you going to do about your jaw?

You sound exactly like me lol.

Meg

[babsmcd]

Hi Meg

I was diagnosed with Basilar migraine 3 years ago it is one of the worse forms of migraine , I spent 3 weeks in hospital initially . I have had various medication which I've suffered with the side affects . My trigger is exercise ! Or if I get tired I lose my balance , and get the vertigo etc , I also have cut out caffeine . I have found that an Indian head massage from a good therapist really helps and I try to have one every month. I am on Lycra at the moment but am cutting down the medication as I am not sure they are helping . I take A good B vitamin complex which seems to help . I am going back to see the neurologist on the 3rd August as he said I should be back to normal by the end of the year , that was 2 years ago , ! I had some sort of seizure recently were I lost my memory for a good hour so need to see him and hope to get some meds that work . Will let you know how I get on

Barbara

[Meguinn in reply to babsmcd]

Hi Barbara,

Basilar migraines are scary eh I have a type of attack where I lose my memory too.. Tests have confirmed that they aren't seizures though. Basilar migraine can cause varying degrees of loss of conscious, so hopefully for you it was just that, and not a seizure! You should get a CAT scan and/or an EEG.

An Indian head massage! I'm interested in that!

Take care,

Meg

[babsmcd in reply to Meguinn]

Hi Meg

Yes I had a scan and an MRI before being diagnosed with Basilar migraine.. A lot of people don't understand that it's not just a headache but gives you stroke like symptoms . I never had headaches before this find a good therapist to try an Indian head massage it has certainly helped me

Good luck

Barbara

[Meguinn in reply to babsmcd]

Exactly.. Calling it a "headache" doesn't exactly do it justice!

Do you get your massage during a bad vertigo day, or do you just have them pre-scheduled?

Meg

[babsmcd in reply to Meguinn]

I just have them when I have a really bad week . I do get relief from it , I also lose my balance a lot with vertigo when I get too tired so try not to do too much although it's hard as I'm an active person . Really hope it helps you as anything is worth a try

Good luck

Barbara

[Honkyjayne]

Hi I haven't found any foods trigger mine I cut out all kinds of food I'm on naproxen for the pain but the symptoms never go away maybe that's what you have to put up with its the amount of times I thought I was on my own that most days can't do anything horrible isn't it people don't understand when you tell um about it if they never had migrains hope you find relief jay

[Meguinn in reply to Honkyjayne]

Thank you so much I know.. People definitely don't understand the half of it!

[Joyceito]

Hi there. My migraine sounds a bit similar similar to yours. I have disturbed vision a lot, with nausea and vertigo. I hardly ever have headache so it took years to be diagnosed with migraine, but that's what it is, and awful. None of the usual migraine medication was any use

The good news for me is I have been put on flunarizine by my neurologist. It's not licensed in the UK. It's worked really well for me, the nausea and vertigo are almost completely away and I am working full time with no sick leave in the last six months. Before I was too nauseous and exhausted to get out of bed. Good luck.

[Meguinn in reply to Joyceito]

That's amazing that you've been working for 6 months!! I'm definitely going to ask my doctor about the flunarizone. I'm in Canada so I'm not sure if it's licensed here?

Meg

[Robsny]

I have suffered from migraines for yes too. I have tried everything and the only thing that helps is medication from the Triptan family. I use Rizitriptan presently because my insurance covers it. I use to take Zomig, which works great. You might want to eliminate chocolate and most sugar from your diet. I hope this helps.🙏🏻

[Meguinn in reply to Robsny]

Hi there,

The Triptan medications really seem to be the key for a lot of people..

I have eliminated chocolate a while ago so no worries there, and I really don't eat much sugar, but I'm curious as to why? Is sugar actually a migraine trigger? And would this include natural sugars like honey or maple syrup?

Meg

[babs1234]

The only meds that have helped me is sumatriptan but the migraine does come back when it's worn off and I was advised to take no more than 8 a month. Not much good when I get almost daily clusters. Started doing neck and shoulder excercises every morning which seems to have helped. I have a chi machine which helps relax tension too.

Good luck

[Meguinn in reply to babs1234]

What sort of neck and shoulder exercises do you do?

I need to look into the massage, I have heard a lot of people swear by it.

[babs1234 in reply to Meguinn]

Neck, turn left to right x12 look up and down x12 chin to chest and out X 12 bend head to each shoulder x12 circle head right round clockwise, anti-clockwise x12 .....shoulders, up and down x12 forward with elbows X 12 backwards with elbows x12 squeeze shoulder blades together bring arms forward X 12. I have found a big difference since doing these excercises and didn't realise just how stiff my neck and shoulders were as I built up slowly to the 12 repeats. My migrain always starts in my neck