I am reaching out for help as 13 years of migraines and feeling like I have a hangover every day of my life is just destroying my quality of life. I was diagnosed with chronic migraines in 2007. I’ve had them since 2002. I’ve seen 3 neurologists and had a sleep study that showed that I have sleep apnea.
I’ve been on preventive medications, mainly Topamax, tried Botox injections, Migranal, Treximet, Effexor, etc. Nothing works. Topamax – nothing. Botox – nothing. The others may help with the pain, but not the terrible feelings and the pain will usually persists until I go to sleep. I’m trying C-Pap with no good results. I’ve tried 12 liters of oxygen for 20 minutes with no positive results.
My current medications are Celebrex 100 mg twice a day and Effexor 75 mg daily. I’m also prescribed Xanax, Metoprolol, Lipitor, and a water pill.
There is a strange pattern. These migraines are usually every other day like clockwork. If I have one on Monday, Tuesday I’m OK, just a little tired and so on. I’ve also noticed a fluid buildup with these symptoms.
Can someone give me advice or help answer the following questions: Are these migraines? Why every other day? Why a fluid buildup? Is there a rebound effect? Can these be cluster or tension type headaches? Stress? Other?
Anything will help as the doctors can’t seem to pin it down. These migraines symptoms are destroying my life.
Thank you for reading this and I look forward to your answers!
First let me apologize for not getting to you sooner – I’m so very sorry. Now let’s see what I can do to help you out.
It sounds like you have a lot going on, and it’s always good to try and get to the bottom of things. Unfortunately this can often take longer than we’d like, many of us aren’t accurately diagnosed for years. Now for some good news. Let’s talk about your C PAP. How long have you been using it? Do you use it every night as suggested by your doctor? I’m sorry about all the questions, but having all the information will point me in the right direction to help you. If your CPAP is not worn every night, you won’t get all the intended benefits from it. If fit is a problem, many advances have been make to these devices. They even make ones for side sleepers! Have you noticed any correlation between sleeping habits and these migraines? That would be the first thing I would investigate.
The thing about medications is it can take up to 90 days at the right dose before we see a reduction in our migraine frequency and severity when we start new medication. During this time potential side effects may lessen as our body adjusts to the new medication. If we don’t give each medication a fair trial, we’ll never know if it would have been the one medication that would have worked. Does that make sense?
I wish I could tell you exactly what type of migraine you are having but only a qualified doctor can do this. An accurate diagnosis can be achieved after you have a complete neurological exam, discuss your symptoms and you and your family’s medical history with the doctor. You mentioned you’ve been to a number of neurologists, but have these doctors been board certified in headache medicine? It may be time to seek out the expertise of one of these doctors. It’s not that neurologists aren’t good doctors, but it’s hard for them to be experts in one area because they treat so many different conditions like multiple sclerosis, stroke, epilepsy, Parkinson’s and others. Migraine/headache experts are just that, experts in one area – migraine and headache disorders. Here is information on what makes these doctors so special and how to find one; https://migraine.com/blog/how-are-migraine-specialists-different/ and https://migraine.com/blog/looking-for-a-migraine-specialist/. It IS a hassle seeing yet another doctor, but will be worth it to get your life back.
You mentioned rebound? If you take something every day or nearly every day to help relieve your pain it could be part of the problem. Taking migraine medications like Imitrex, Maxalt and others and/or pain relievers, whether they are over-the-counter or prescription, more than two to three days a week may create medication overuse headache, moh which was formerly called rebound. If we are in an moh cycle our migraines will be more difficult to treat and we can end up in a daily cycle of pain that is hard to break. When you get a chance take a look at this information; https://migraine.com/blog/help-how-can-i-not-overuse-migraine-medications/.
How does that sound? Let me know what you think.
Hi all I am sorry Rich but have you considered seeing a neurologist or chiropractor? Often times migraines can stem from neck or back pain. Also this week on the show The Doctors a migraine expert will talk about his special migraine procedure-http://www.reedmigraine.com/thedoctors.html
Maybe this would be right for you Rich, but definitely check out a neurologist if you haven’t yet.
I hope this helps Rich!
Have you looked into maybe food preservatives? I only ask because I suffer from chronic migraines and recently discovered that the additive of caramel color is a trigger for me. It’s in a lot of different foods, seasonings, and drinks. I myself was getting migraines constantly until I discovered this by keeping a very detailed food journal. I wrote everything I consumed down, when I ate it, when I got migraine symptoms. One day I went back and looked at all the ingredients and found only caramel color was the common ingredient before a migraine. I hope you find out what’s causing yours.
I’m really late to address your question, & hope you’re feeling better at this point in time. All of the above are great inputs. I just wanted to add for you to keep searching for the right doctor. I’m on Dr. number 20 something and have found the right one finally. And that number includes several migraine specialized neurologists. Never give up until you have gotten the right doctor and your needs are met.
I feel your pain, only slightly shorter period, 2.5 year however I have not tried nowhere near as many things as yourself.
Keyword here is ‘every other day’ – like clockwork, yes same with me. On bad days other symptoms for me are increased hunger (constantly eating), aching body/feet/neck, frontal/temple headache.
I’m 44, otherwise fit and healthy, good diet (low refined sugar/carbs, higher good fats), I never get sick yet this alternate day headache is driving me mad. No matter I do can turn a bad day into a good one or vice verse – If I get up good in the morning, I stay good.
All important bloodwork is fine and one thing I’m about to try is something I haven’t seen anyone try or suggest with the same issue is: WATER FASTING!!! I’m going to try it from 15 August for 7 day water only fast and get back to you with hopefully positive results!
Thank you for sharing and I look forward to hearing about your results!!
If you haven’t seen a “true” migraine and headache expert, I would encourage you to. If you’ve heard this before, my apologies. Neurologists may be fine doctors but have a hard time being experts in one area because they treat so many different conditions such as epilepsy, stroke, multiple sclerosis, Parkinson’s and others. Migraine/headache experts are board certified in headache medicine, which is different than being certified in neurology and usually treat one group of conditions all day, every day. When you get a chance take a look at this information; http://migraine.com/blog/how-are-migraine-specialists-different/ and https://migraine.com/blog/really-find-headache-specialist/.
thank you Nancy – Migrine is only one of the symptoms for me. I get achy feet soles, tense neck so it is more than just a headache however I’m hoping it will be some ‘crazy’ bug/virus/pathogen in my gut that is provoking my immune system.
My headache is look like you. Every other day – like clockwork.
I’m 28 and I have headache for 5 years. Before that, I never had a headache.
I tried all of the doctors and drugs that you think, but nothing changed.
I’m tired and no one can find what is my problem.
Every Doctor surprise when I say I have one another day headache. They say it’s impossible.
I am a computer engineer but my pain don’t allow me to be what I must be. It’s very very hard for me to work in this mood.
What can I do?
Mate, I feel your pain. I’ve tried 7 day water only fast, 7 day potato and water only, 7 day Urine therapy – yes, I drank my urine for 7 days. Best results came from 7 day water only fast however it’s reverted back to every other day.
I have also passed a round worm, my stool got better however still no avail to headaches/fatigue.
I still believe it is some sort of pathogen/parasite that has the 48 hour cycle. My latest suspect is the gut biome. I was on low carb and almost no starch diet and I’m starting to believe that I need to increase potatoes, pasta and rice.
What is your diet like? Let’s try and find the commonality here between us every other day sufferers, it will have to be the same thing given the rarity of this.
Yesterday I had headache. When I slept afternoon for 2 hours, my headache decreased and had a very better feeling – but not completely good and I had a confused feeling.
And now Today I have a very very unbearable headache.
It means every “deep” sleep change my state.
I prefer to not sleep during the day; because it exacerbate my next headache.
Every other day is the key here. Ok, I was fine till about 2 years ago and the only thing that changed is that my diet got cleaner, less alcohol, less processed carbs yet my situation got worse.
Blood tests same (little low in haemoglobin however this had been the case always, just the way I am). Rest of blood is fine, I donate blood occasionally!
I’m now focusing on improving gut biome so I’m feeding it a lot of pre and pri biotics like fermented veges, potato starch (unmodified).
Yes, I’m a ‘perfectionist’ as well, I’m also 173cm but 68kg, fit and ‘healthy’. I know we’ll nail this.
You seem too thin, I wonder krones disease or leaky gut especially for you given your weight. I eat a lot yet I’m normal weight, I wonder given the amount of food I consume if I should be bigger!?
Ok, you checked gut / stool for parasites?
My hands but not feet get cold in winter only, my thyroid checked fine every time.
I try not to nap during the day as it may impair my ability to sleep at night.
Your supportive replies are wonderful – exactly what this community thrives on!
As tough as it is to wrap our head around, migraine is a genetic neurological disease, currently without a cure. If I’ve mentioned this before, forgive me; one of the best things we can do for ourselves is to keep a detailed migraine diary/journal. This will help us identify our triggers and any patterns our migraine attacks may have. When you get a moment, take a look at this; https://migraine.com/migraine-treatment/.
Whatever it is that is causing this may give us (slightly) different symptoms however once again, this every-other-day is almost an unheard of. The fact that Google search only reveals 2 forum threads (this one and inspire . com) and that I ran it past multiple GP/MDs, naturopats, physio therapists – everyone is starching their heads.
My current status/action plan is
1. for 6 days now I’ve gone high carb (from low carb) diet with plenty of good starches from potatoes, rice and NO animal products of any kind! I really think that we consume too much animal protein and 99% of it is poisoned
2. soon after all the holidays sometimes in Jan/Feb 2018 I’m going to do another 7 day water only fast (again!). I did one in Aug 2017 and felt great.
I’ve been keeping a diary for years now so I’ll keep you posted once I nail this.
These are the two things I changed and i no longer have this issue. 1. December 2017 gone vegan, then 2. I stopped using my mobile to watch endless YouTube videos by 7pm. Strictly no mobile after 7.30 except absolutely necessity. Until I implemented 2nd point nothing really happened so I think this alone was the solution.
I am still continuing with both by the way.
Not really, unfortunately. I’ve started looking at my mobile past 7pm and I don’t know if that’s the issue. I’m still vegan, great for overall health, my cholesterol dropped dramatically and other things got better. I am only now going to see a psychiatrist in an attempt to resolve this and hoping to even try get my hands on lithium carbonate or any other pharmaceutical. I’m against pharma but it may be required to get me across this. Why Lithium carbonate? I saw one article that describes exactly my/our issue and lady got better after taking low doses of it. Look up article ‘Cyclic 48-hour unipolar depression’.