What is going on

I know, I know, I have been MIA. Since my last post a lot had been going on health-wise. I feel like I have not gotten over my adrenal issue since my adrenal crisis, mostly because of the lack of health care here in Russia, but there is not much I can do about that.

Than the migraines. Because my whole endocrine system is out of whack my head is responding accordingly. My daily headaches are killer at this point. I now get these lovely weekend migraines, usually starting either on Thursday or Friday, which I find hilarious since I don’t work. And they last good 3 days. They are pretty manageable during the day, but as soon as I put the baby to bed my head goes nuts. I  understand that, makes perfect sense, but it also makes it impossible to sleep….yeah, I am not one of those lucky few that can sleep a headache or a migraine away  (like my mom or my hubby, lucky suckers). It just leaves me in this crazy zombie like state where I  don’t know what is going on, trying to find a comfortable place for my head on the pillow. 

As far as my daily headaches go I considered if I am in the medication overuse territory here, but from what I know about them they start in the morning. Mine start in the late evening or when I am about to go to sleep. So I am not really sure. But I am really cutting back on all painkillers, they don’t help much at this point anyway, it’s more of a habit or a clutch or something… 

And one positive thing that will make this blog more of a success (finally) is that I got a new tablet (hubby hates Apple and couldn’t and wants to switch me over). Up until now I only had 1st generation iPad (yes, they still exist, they work marvelously, but you can’t get many apps on them, but it was fine with me and I will still use it, because I love it) so the only option to write my blog posts was to write it on the iPad, send it over in an email and publish on the laptop, which was a pain… now I don’t have to do that anymore 🙂 

Stay tuned 


Baby and a migraine

Long before I was even thinking of having children I was always wondering how on Earth will I survive having an attack and taking care of a tiny being that, let’s be honest, mostly communicates via high pitch or annoying cries. 

I remember my Mom shutting her bedroom doors for a day or two, leaving us with my father.  We knew to be quiet around those doors, not to bother Mommy, because she was not feeling well. Sometimes she would let us in to play quietly by her feet for a few moments. I never liked it. 

So before my boy was born I was just prepared with a lovely stash of all of my favorite medications: Imitrex, Fiorinal, Percocet, Tylenol 3s, Xanax, and of course Ambient for sleep. Of course I couldn’t do any of these while breastfeeding….

Then he was born. The hospital’s pain management was a major fail as they did not wanted to understand that I do have certain tolerance build up and I was just in horrible pain. They eventually agreed on Percocet so I just went on with mine. 

I think thanks to the shock of it all it took a few long weeks for my migraines to return to their normal patterns. Plus in the first 2-3 weeks I was taking that Percocet for the C-section pain. 

I ended up not being able to breastfeed as I completely lost all my milk. I have tried Domperidone plus all the supplements, nothing help. It was most likely the results of the cyst on my Pituitary gland. 

But after 2 months or so the migraines have returned to their normal pattern with on surprising change:

The migraines would wait until the baby went to bed. 

I have found this incredible. I very well know I have a migraine, even how bad it is, but I am 95% functioning, pain is almost not there, high pitched noises are not bothering me. But as soon as I put him in his crib at night my knees buckle and tears start pouring out of my eyes as that migraine goes from 0 to 1 000 000 in about a milli-second. 

Amazing what nature does!

Yeah, and if I take an Imitrex an hour before his bedtime I am usually good 🙂 (although that is, unfortunately, not always as easy as it sounds). 

So so far so good 🙂 no ear plugs needed here, no super stoned Monmy either. 

Hope it was like this for you as well or maybe you have some tips and tricks how to survive a migraine with a newborn/baby/toddler. Let’s hear them!

Pregnancy and a migraine 

So for the longest time every doctor in my team has told me that pregnancy will do wonders for my migraines. On occasion, some of them would mention that there is a veeeery small percentage of women that remain the same or even smaller group that gets worse.

I was really convinced that I would get better ☺️. Well, that did not happen. My migraines didn’t get better, I would say they got worse, maybe because it was impossible to treat them.
Eventually my very active life style (walking 15-20 km ; 9-12 miles a day; doing rowing and yoga every single day) became very lazy and sedentary because baby was pressing on the cervix to the point of opening it by the time I was in the fifth month of the pregnancy, so pretty much bed rest for me.

But there was a month or a month and a half in between month 5-6 when the migraines did subside. That was a nice break. Then they came in with a vengeance. I was allowed to take, on rare occasion, either Tylenol 1-3, or Percocet.

So looking back at it it pretty much sucked. It was migraine on top of migraine and I could not do anything about them. I suppose the next pregnancy will be exactly the same. Oh well, something like this would never discourage me from having more babies. It is such a short period of time in our lives and the reward in the end…. Just unbelievable.

But definitely some pointers for next time:

  • Yoga as usual before and for as long as I can manage
  • Modify diet, eliminate sugar and processed foods because for me these are major triggers
  • More oily fish (within guidelines)
  • Greens, greens, greens.

So how about you? How was your pregnancy or are you maybe thinking of starting a family and are scared? 

New migraine treatment in the works

I don’t know how much you follow new treatments for migraine, but it is a very difficult disease to treat. If you think about it, it is kind of clear, by the lack of new treatments in, pretty much, forever. Well, apart from Botox. Other than triptans there really are no real treatments for migraine headaches and even those are not the best and cannot be used by everyone (people with heart issues, for example).
So I was going through my Twitter feed last week and came across this exciting article:

New treatment for migraine 
So these are antibodies, which is completely new game in migraine treatment. It would most likely come with a genetic screening to see if a patient would actually respond to the treatment (hallelujah) and would come as an injection every 3 months.

I don’t know about you, but I find this really exciting. Finally something! If they actually go through with all the studies (and don’t price it in such I way that I will have to sell my first born) this will truly be a breakthrough in migraine treatment. Well, if you are one of the lucky ones who will respond to the antibodies. But even if you are not, I think this just opened a whole new gate of treatments for us. I think times are about to change and we will no longer be forced to depend on triptans or the horrible painkillers… (OK, what is happening to me? I never sound this optimistic. ) 

Cannot wait! (As mentioned in the article, should be out in 2018)

My migraine lifesaver 

While the standard advice to isolate yourself in a dark room and basically cease to exist for however long is lovely, I was never a fan. I cannot do that, I will not live my life like that, nothing can have such control over my life and take so many days out of my life. I would spend most of my life in a dark room, alone. But I have nothing against it, if it works for you, that is great. My mother has done it for years, but she had one migraine a month.
In terms of non-drug help that works wonders for me is deep breathing, the type you would do during meditation. I was introduced to it when I started doing yoga some 10-12 years ago. Then I realized how shallowly we breathe, we rarely take that deep, cleansing breath our bodies so desperately need. If we would take just 3-5 deep belly breaths every hour, I can guarantee you not only our lives would be different, I think the world would be different, as people would be calmer, more peaceful. 
Eventually, when I have realized how helpful and important deep breathing is in dealing with my migraines I started looking on the internet for a biofeedback device. I have found EmWave (http://store.heartmath.com/emwave2) (note: I am in no way associated with this company, do not receive any money from them, I just really like the product). I have used it for a year or so and it really helped to teach my how to properly breathe. I mostly used it in the evening, or during a headache (usually not during a migraine, because at that time it was too much to focus on something) .
It is, apparently, great for dealing with sleep problems as well. When people in my family used it, everyone pretty much just fell asleep. I rarely did, but did sometimes, which was shocking to me (as I have mentioned previously, I have big problems with sleep). After a year, when I felt like I don’t need it anymore I have sold it to a lovely lady, who was very happy with it as well. 
As I have mentioned, another big thing that has helped me was yoga. Deep breathing and breathing during meditation part of yoga was incredible in teaching me how to properly breathe. If you have ever tried either yoga or meditation you know. If not, give it a try. 
Meditation was very difficult for me, because my mind is not the best at cooperating with switching off as I tend to think about everything and basically regurgitate everything that has happened to me that day, week, month…. It took me years to quiet it, but eventually it worked. And the breathing went with it, marvellously to be honest.
So now, when I when I have a migraine (or any type of pain, discomfort, anxiety or any physical or emotional issue) I just start my deep breathing and go into this state of mind where I switch into focusing on just the breath. And when I do this the pain just sort of moves into the background. It does not stop, it does not go away, but the mind stops focusing on it. I would never believe it until I actually experienced it. I do not have to be lying down (but it does help, but I don’t have to be in a quiet dark room), I can do this in a crowded shopping mall in the middle of Christmas shopping and it still helps. 
How about you? Have you tried focused, deeb breathing when you have a migraine? Do you meditate? Have you tried biofeedback for your migraines? 

Ketogenic diet

Little background on ketogenic diet. Ketogenic diet is, to put in simply (although not really), a paleo diet. It is basically just protein and fat, no carbs and I mean NO carbs. It is used by people suffering from epilepsy and it is really helpful as last resort. It is considered a last resort because it is very difficult to stick to and also puts a lot of strain on the body, especially the kidneys.

Ok, so why am I talking about this? For years I have noticed a connection between sugar and my migraines. Whenever I am about to have a really bad migraine I get this insane sugar craving where I feel like eating anything sugary, which is unusual for me, because I am not that type of person normally. I have always wondered if it is the sugar craving that causes the migraine or the migraine that causes the sugar craving… Most likely it is part of the prodrome and the rise in the blood sugar just pushes the migraine over the edge. Many times I have tried to resist, it never helps. Because of this (and many other reasons) I have tried to watch mu sugar intake and when I came across the Ketogenic diet it just kind of clicked, especially with the epilepsy connection.

I was able to stick to it for few weeks and it made a huge difference. I think you know where this goes…. Why oh why can’t I do this? Why can’t I kick the stupid sugar habit when it is destroying my life and causing me so much pain? I silently ‘laugh’ at people who are overweight and always judge them for not being able to change their diet to save their lives… for choosing food over their health. And here I am, doing the same thing. Reaching for the honey to put on my Greek yogurt, even though I love the taste of the plain one.

As I have said previously, I am not crazy for sugar. I never drink anything other than water or unsweetened tea.I hate sugar in my coffee, I don’t have to  have cake or chocolate bars, yet I still buy these little temptations for my husband and eat them with him and reach for these healthy sugars, such as honey and no sugar added fruit spreads.

Anyway, my rant on my inability to stick to this is over. I will try, again and again, until it sticks. I just wanted to mention this, maybe it will help someone. I don’t think it is necessary to go Keto, Paleo is enough. But it is magical what cutting sugar does to a person suffering from migraines.

And maybe if you have some tips to help me or your own stories, please, do share….

My second Adrenal Crisis …. In Russia

The reason I have been MIA on the blog is because I have had a totally unexpected adrenal crisis. I do not believe that I have mentioned it yet, but I have adrenal insufficiency. I was diagnosed maybe 8 years ago after having a crisis and going through months of hell because no doctor has recognized what was going on, but after eventually figuring everything out everything was pretty much under control.

The thing about adrenal crisis is that it occurs after suffering major trauma or having a serious infection, to put it simply, when there is a major stress in your body and it can no longer cope. When the amount of cortisol you are supplementing with pills does not match the requirements of your body everything goes nuts. These are things you usually notice and you adjust your dose. Pretty simple. Well, apart from the trauma part, then you cannot do anything. Then the doctors that treat the trauma adjust your dose to prevent a crisis from occurring. (you wear a medic alert thingie of your choice)

But nothing like that happened to me, I was fine. OK, I have a 7 month old, but that child is pretty much an angel, sleeps through the night. He does not stress me out. As far as normal stress, there was more of it in the last couple of weeks, but again, stress is normal and does not cause an adrenal crisis. Not even a combination of all the little bad things going on could cause the crisis and that is why it scared the lights out of me.

I went to bed thursday night feeling pretty much normal, but woke up around 1 am with horrible back (flank) pain, nausea and dizziness. That pain just got worse and worse. When I went to the bathroom I knew I was going to faint so I got on the floor to lay down, then I woke up there… I knew I was in trouble… Around 5 I woke up my hubby, who, when he saw me was scared beyond words. He got me my cortisol pills, so I took 50 mg extra, which I immediately threw up. Then we knew it is time to go to the hospital….

Have I mentioned that we have a 7 month old? And we are in Russia? Oh boy… This would be difficult even in Canada….

So, as any Mom, no matter the pain, I got the baby ready, with the help of my hubby, who still had no idea what to do with the baby because we have just arrived from Canada few weeks ago. He basically spent a total of few days with his son at this point, all with me. No idea how to change a diaper, how to feed him…

When we got to the hallway, stroller, diaper bag and everything, I thought I have managed to tell him that I am going to faint. Obviously I was no longer able to speak, but he managed to catch me. When I eventually came to he looked like his world was crashing into pieces. I have tried my best to act like I was not afraid that I was going to die and I have not told him that I lost my central vision… He somehow got us to the car and off we went through the whole St Petersburg into a private hospital.

When we got there I have tried to explain what was going on, but few doctors know what adrenal crisis is, even in Canada. They acted very quickly, but unfortunately gave me Dexamethasone, not the standard 100mg of IV or IM Cortisol as I have told them (I know, no doctor likes to be told what to do….) so my blood pressure kept falling and they could not stabilize it and got scared so they have transferred me to a regular Russian hospital…. Well, that was something. From a top-notch, five-star hotel like hospital to an old school socialist Russian one. When they have asked me to give a urine sample and I walked into the washroom the only reason I did not faint was because I just could not imagine falling to that floor, I also walked right out…

But one thing about the Russian hospital that was incredible was the doctors. They knew immediately what to do. 100mg of cortisol intra muscularly, my blood pressure went to 100/60 and I knew I was fine. In a few hours of monitoring I was transferred, along with discharge instructions, back to the private hospital.

Craaaaaazy day… It made me so scared for a few days because I do not think it should have happened. I could have died. What would my poor husband do? Left alone with our son? Hopefully the paranoia will go away soon because it is not a comfortable feeling that it can happen again….

The most important thing about migraines

OK, not about all migraines or all people with migraines, but this is something that needs to be kept in the back of your mind if you or someone you love begins to suffer from migraines. Once migraines start, they open this pain pathway in your brain and if they remain untreated (by this I mean with actual migraine medication – be it triptan or a preventive) this pain pathway can eventually become stuck in an always “on” position.

For some people this process takes years, for some it takes months. In my case it was surprisingly quick. Maybe a couple of months from my first migraine to developing a nasty case of chronic daily migraines and no, mine were not caused by overusing medications. Unfortunately, I was one of those people that was cheap to take that stupid Imitrex (even though I had insurance – how stupid can you be???)  I always waited, it was always “Maybe it will stop. Maybe it is not that bad.”

One untreated migraine added to the next one, and the nerves in my brain got so used to being fired up that they stopped switching off, they just stayed on, in that migraine phase. But compare that to my mother, who has had menstrual migraines for 25+ years, rarely treated with anything, other that acetaminophen or paracetamol, and she never developed anything more serious. And even though my migraines are obviously a genetic gift from her, something has changed in me, most likely epigenetic.

No doctor has ever told me this. But more and more I have read about migraines the clearer it became that this is indeed what has happened. I was lucky enough to have access to the medical library at University of Toronto (along with enough of medical education to actually understand what I was reading) so I could really go and explore all the Neurology text books, journals, books and all other readings I could get my hands on, along with all the mainstream migraine and headache books, courtesy of the Toronto Public Library.

So please, learn your lesson from me: treat your migraines, don’t be cheap, talk to your doctor, you don’t want to make a completely treatable condition a living hell that is impossible to get out of. It has been over 15 years since my migraines became chronic and daily and I have not been able to find a treatment plan that would break that cycle yet.

Me as migraineur… The beginnings

So pretty soon after my first real big migraine when I was 15 it didn’t take long, maybe a couple of months when they would come once a month, they would morph into the famous chronic daily headaches.

So by around 16 and a bit I would have a headache every single day with a migraine sprinkled in not once a month, but by this time, about one a week, lasting three days. “Luckily” my Mom has had migraines for years so she recognized the issue and took me to the doctor soon enough. At first I was prescribed Imitrex, which did help, but hey, you can only take so many of them and it does nothing for the daily chronic stuff. So off to the neurologist I went…

I was completed checked out (at least that is what we thought at that time): EEG, ECG, Echo, MRI, CT and whatever else they have thought of. Everything was fine. Then I was started on preventives. And I joke you not I have tried them all, I don’t even need to list them here, just google migraine preventives and the lists you find on any website that is what I went through over a couple of years. Beta blockers were the only ones I have not tried because of history of asthma. We even gave chance to ergotamines, which are beyond difficult to take as the possible side effects are truly scary (growths around heart anyone?).

Nothing ever helped.

I was part of the Allergan’s Botox for migraine trial in Canada. Thanks to me and couple of other folks Canadians can enjoy Botox as migraine treatment, which I think is great. For sure beats popping a preventive every single day. I am a big fan of Botox, I think it is much simpler, easier way to prevent migraines. Much safer for you, whatever people say. I know it is made from a toxin, I studied this, I know all about it, I still say it poisons you much less than a daily preventive.I still do it whenever I get the chance (I love my doctor in Toronto and trust him only pretty much, so whenever I am there I do get it, although for me it does not stop the migraines it makes everything much more effective).

So by the time I was in university the chronic daily headaches and migraines have morphed into pretty much chronic daily migraines, it was hard to distinguish one from the other. I was photosensitive, smell-sensitive, sound-sensitive, seeing silver stars all the time. I would get two big migraines a week.

I remember some of them being so bad and so quick that I would be sitting on the subway going home from school thinking that I don’t know how to stand up and I have no idea I will get home. Should I just ride around till I figure it out? Should I ask someone? Can I even speak? There were many of them when time stood still….

Did I mentioned I was going to university?…..Migraineur at University