I'm on my 53rd day of a migraine and my next neurologist appointment isn't for 3 months. What do I do?

[greenpunk]

I also have several red flag symptoms, but when I went to urgent care they told me to stop wasting their time, so there's no point in going back there.

[Onthemove1971]

I am not sure if you have had migraines a long time, but treating and stopping them ( arriving in the doctors office or ER) within no more than 24 hours is the key. When things get really bad I need an IV of fluids and medication. In fact my Neurologist has "orders" for when I arrive in the ER. But I have not been in over 4 years because I have a very good schedule of both preventives, short acting and abortive medications.

A few questions.. have you been treated by a migraine specialist ( even if you have to travel and pay yourself)

What type of preventive medications are you taking?

Are you drinking lots of water all day long

Are you making sure you are eating and not skipping and meals and including protein in your diet?

I also use ice/heat( showers and packs) to help, in addition Inuse lavender and mint to help.

Hope some of these help, but I need strong medication ( all migraine, anti- inflammatory and anti-nausea).

Hope this helps.

[greenpunk in reply to Onthemove1971]

I am on the waiting list to see a headache specialist, but it's 13 months and I can't afford to go private. I'm taking candesartan, and have tried lamotragine and topamax but was allergic, and was on pizotifen for a year but it didn't help.

I drink around 3 liters of water a day, and try to eat as regularly as possible. When I'm too sick to eat solids, I have protein shakes and smoothies.

I hadn't thought of infusing lavender and mint, but will certainly try that.

Thank you so much for your advice and help!

[Onthemove1971 in reply to greenpunk]

One last thing.. the Podcast "Heads Up" is free and run by 2 UK migraine Specialist. They cover everything. I hope you can start to listen and get some good help from them.

I have had great luck with taking high doses of Magnesium ( there are many different types) which take 3-6 months to work but have really helped me.

I also take Feverfew ( 2x daily)

Many of us have neck and back pain.

Good luck!

[Cat00]

Have you been to your GP?

Also what are your red flag symptoms?

I've had migraine for months at a time, you can have chronic daily migraine.

[Onthemove1971 in reply to Cat00]

Chronic migraines, from what I know can be caused by taking to much medication, sometimes called "rebound" headaces.

[Cat00 in reply to Onthemove1971]

I don't have medication overuse migraine.

[greenpunk in reply to Cat00]

Waking me up from sleep, worsening/getting better with certain positions, worsening with coughing or straining in anyway, passing out, numbness/weakness, random tingling.

I've been to my GP, they don't want to do anything because I'm under the neurologist.

Hope you're doing well, thanks for the help and advice

[Cat00 in reply to greenpunk]

A lot of those things don't sound too alarming. The passing out is something that's happened to me occasionally which we suspected could be a result of the effects of pain on my blood pressure but I don't have a machine to measure it so we havent been able to check that out. I would worry if it was happening a lot though.

Waking from sleep and relief/worsening with different positions while I'm aware is one of those things people write about in regard to strokes is also very normal in my experience with migraine. Numbness and tingling are more common with hemiplagic migraines have you researched them to see if they match your experience?

I think if you are not coping, which lets face it who would with 53+ days of migraine, and 3 months to wait for the neurologist you are within your rights to expect some help in the interim. I would write to the practise manager and state your case. Although it is important to not embellish these letters with lots of accusations and emotions (however justified) bc they will be more likely to get combative.

When I had continuous migraine for over 6 weeks I found it very hard to find a GP that believed me. This did not change until years, and many different neurologists later, I was finally believed and treated. I am told things are different now and it shouldn't be so hard!

It might be worth you contacting a charity like The Migraine Trust as they can support you in gaining access to appropriate treatment.

[DRunnerchick]

Greenpunk-

I empathize! I have had a nuclear ☢️ headache for over 80 days now. I suffer from migraines w/o aura & possibly hemicrania continua. This latest might be a reaction to my COVID vaccine because it was in that window of time and previously my migraines were well controlled w/ topiramate, gabapentin, B2, COQ10, magnesium glycinate as preventive and rizatriptan only occasionally when I have the rare breakthrough migraine. I do make my own lavender tea (home grown/harvested/dried) and limit my caffeine.

My Wizard neuro has cracked the code on this h/a last week. FINALLY! It is not gone, but he came at it from a two pronged approach I listed above. He actually prescribed indomethacin for hemicrania continua (that is the only treatment for it) and put in for a pre-auth for Aimovig (a CGRP injectable) but insurance denied it so I am now trying propranolol (a beta blocker) as a migraine preventive. So far my headache is 90% better and down to just a remnant.

As far as home remedies go, you can try either a hot or cold compress on the back of the neck and see which one helps. Sometimes, migraines are instigated by tension as well, so heat to soften the neck helps. If not, if it’s more, pure migraine without inflammation, cold/coolness might work better. Sometimes doing it on the soles of the feet work too. Like soaking them in Epsom salts (which are magnesium- you absorb it through your skin 👌🏼but don’t try to ingest it this way 🤮

Just a few things…hope something helps until you can get the health care system to work for you.💐🍀✨

D🏃🏽‍♀️

[Onthemove1971 in reply to DRunnerchick]

I am curious how often do you take your magnesium and what dose?I did not see you day anything about injections ( migraine drugs) ot Feverfew? I use both of them and have stayed away from the ER for a number of year.

[DRunnerchick in reply to Onthemove1971]

I take 400mg of magnesium daily. No injections at this point. No feverfew. No ED (Avoid it at all costs, especially with COVID). Propranolol is an old beta blocker/ anti-HTN that is used off lane for migraine- has been since the 1980’s. Insurance companies just find loopholes and require any possible cheaper alternative, even if the doctor has already thought about all the possible interactions and what is best for the patient. So, I try the low dose Propranolol for several months (months of my life I won’t get back if it once again fails!!) and eventually, hope to get to Aimovig which is a monoclonal antibody CGRP which can overlap and potentially help my other condition. The would help progression which is much cheaper in the long run. Unfortunately, they look at it in isolation. I digress…

I have had to go to immediate care twice recently (they were worthless— actually, less than worthless!). Instead, I messaged my neurologist, he prescribed something and I messaged him to keep him updated until our scheduled Virtual appointment. I haven’t seen him in person since before the pandemic hit last year. I have another very rare condition that requires frequent visits (anywhere from 4 weeks to 2 months). So, in some respect, you can blame me for clogging up the works and making it hard to get appointments.

D🏃🏽‍♀️

[Onthemove1971]

I know this sounds crazy.. but I have been told that I can take up to 1600mg daily.Once I started with 3x a week 400mg (sometimes less). I find that the noom dose helps the most

I usually feel a tinge of pain I take the dose and the pain goes away.

[DRunnerchick in reply to Onthemove1971]

There are different forms of magnesium, and I have experimented with them to find what I tolerate the best and what works the best for me. I would caution that high doses of daily magnesium can produce diarrhea so if you are routinely taking it that way, be prepared. Taking 400 mg daily, consistently has worked well and also helped prevent leg cramps as well.

D🏃🏽‍♀️