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….

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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

 

 

 

 

 

 

 

Migraineur at university


So in my family it was a given that you go and study at a university. Both of my sisters took the easy way out and went with arts and I went with science (sorry if you majored in arts but that is like comparing cooking soup in a cup and five course meal and the reason I know is, that at the end, I majored in both arts and science).

At first I started with full course load, because hey! I am superman (or superwoman, you pick). Well, I lasted a year at this superhuman pace, long enough to get a super high GPA to get transferred to  my number 1 pick university (I didn’t get into University of Toronto straight out of high school). Then at U of T everything caught up to me pretty quickly. Luckily a guidance counselor recommended setting up a disability  accommodations, which was truly a lifesaver. No one ever asked me why I was struggling so much and how they could help up until that point. Then everything turned around and I could manage everything so much better.

Lesson: go talk to people, ask what your options are, you are not admitting weakness, you are only taking advantage of what is available to you, you are doing it for your health and your sanity. (Believe me, all the “normal” kids are doing crazy things at school and cheating in unimaginative ways, even with this you are not at even playing field…..)

So with this plan, migraines still wildly out of hand, I somewhat managed to graduate and even add another major. I graduated (with honors) with a major in Genes, genetics and biotechnology along with Czech and Slovak studies. I decided to push myself in the end because I figured majoring in both arts and science will make me more rounded and it did. My professor in Czech and Slovak studies really put me through hell in terms of reading and writing and looking at the world in a different way for which I am truly grateful.

It took me much longer, cost much more, but in the end I did it. There was tons of people telling me to quit (strangers, guidance counselors, doctors and such) and I am very happy I did not… It was hell, but I made it through. Because let’s face it. Life is no walk in the park…..

My first migraine

The earliest migraine type headaches I can remember were when I was around 10. They always happened when I was swimming. Mind me, I was not swimming for fun, well, I was, but not like splashing around,but doing about a kilometer three times a week, underwater swimming, diving and stuff like that. Almost like training. Why? I don’t know. I was one obsessive kid (again, more on that in another post, lol)

So, anyway, I remember my head spinning, feeling weird, getting hold on to the side of the pool and then it would hit like a thunder. And to this day I remember how confused it made me feel and how painful those headaches were and how I would see tiny silver stars. I also remember how I considered them normal and never told anyone. I think this is the issue with kids, they do take most things as normal and very rarely mention certain things to their parents. Sure, they might say my head hurts or something like ‘I don’t feel well’. But if it happens regularly in the middle of something very engaging, the child might forget or take it as normal, part of the activity. I don’t think I have ever mentioned those headaches to anyone. Not that it matters or makes any difference, but still.

Then the next big one came when I was around 15. Freaked the day lights out of me. It was in the evening and all of a sudden I just remember feeling horribly sick and then the crippling headache came. I literally couldn’t move, every movement would just multiply the pain. I thought my head would explode. My mother was working and my poor father could never deal with these types of things, so he just patted me on the back and left the room. (I don’t blame the guy, he is not big on comforting, that was never his job, looking back at it it is the funniest story ever). That migraine lasted 3 days, just like almost every other one after that…I just stayed there lying on the bed, paralyzed with fear and with pain, staring at the wall, breathing shallowly, thinking what should I do. I knew what migraines were, because I have witnessed my mother suffer from them since I was little, but at that point I did not connect the dots…I remember someone gave me Advil or Tylenol and eventually I fell asleep and the fun continued in the morning…

And I bet I have had migraines before I just don’t remember them. When was your first migraine? Do you remember it as a migraine or were they weird headaches that someone eventually diagnosed as migraines ?

Me the insomniac

So just around this time 7 years ago suddenly one night I could not sleep. Nothing magical happened. No weird sickness, no new medication, no accident, no trauma, no shock, no emotional trauma, no nothing.

For 26 years I was an excellent sleeper, never had any issue. I would fall asleep anywhere, did not care

about noise, light, was not picky about mattresses, pillows… I would nap throughout the day and it would never interfere with my sleep at night. I could drink coffee anytime and again, no influence.

And then… Boom… My brain forgot how to switch to “sleep” and since that night it never does… Yeah, yeah, yeah, I know, of course I sleep, I know we die without sleep. I mostly sleep thanks to Ambient, so I get that lovely drugged up whatever it is, but I don’t call it sleep. I am not rested when I “wake up”. It takes me sometimes well over an hour to “fall asleep” with it, many times it doesn’t even work. (More on that in another post, some kind of metabolic issue, most likely)

The horrible taste it leaves in my mouth, sometimes throughout the day, I have gotten used to. The weird behavior has gotten down, although, man, was that at times crazy. Yes, I would go and eat stuff, buy stuff online and many other things I would not even mention here, heh. Those don’t happen much anymore, but I also don’t take more than half of the 7.5 mg. (Took me few months to get down to 1/2 of the pill, there were nights when I would take two and no, I tried to stop altogether, but I can’t sleep without them…)

I think the insomnia is something I really have hard time dealing with because it is like some sort of torture. I feel like I did not have a proper rest in 7 years. Man, am I tired like hell, exhausted to the bone.

On top of that it messes up everything else. If I don’t sleep I get a migraine, if I get a migraine I don’t

sleep, then it screws with my adrenals which in turn makes everything worse. So it creates these lovely vicious circles that once they get rolling good luck stopping them. Sometimes I feel like it is a full time

job just to make sure that nothing gets out of hand and everything is just somewhat in check. But at the same time I cannot be obsessive about it because stress is not good either, lol.

If I was not currently in Russia I would happily go to a sleep specialist and a sleep clinic, undergo a sleep study and all those lovely things, unfortunately here, that is out of the questions. Buddha (I don’t use the G word…) knows what is going on and why it would start all of a sudden like that. All the normal culprits causing insomnia have been ruled out.

Oh sleep, how I miss you and how much I hate it when people fall asleep next to me …

😉

Why am I blogging?

I have been thinking about starting a blog for years. Yeah, not kidding, years. First of all, I think that there are a lot of people in the same boat as me, suffering as hell and kind of lost either in the system or just in general (I call it “in limbo” – neither here nor there). Then there are a lot of people who have this or that chronic condition, are sometimes better and sometimes worse and are looking for support or a funny story to read. Then there are family members and friends of us poor suckers that are looking for some answers (like WTH? Why so bitchy? And so on…)

Second, it is some form of therapy, because we all know I need it. Everything I have been through created some form of PTSD and to be honest it is poisoning me from the inside. No matter how many times I say I am fine and pretend that I am tough enough to deal with it, it will not change the fact that I am obviously not dealing with it.
And lastly, I think it is also important for the general public to realize that there are many people you encounter on a daily basis that are basically going through hell and are just powering through and you don’t even realize.

So let’s be a bit more aware about the people around you. It is not just the people with the visible disabilities that have to adjust something in their everyday lives just to function. You would be surprised how hard it is sometimes just to get out of the doors, or hell, just to get out of the bed.
Ok, and more thing… Who knows, maybe one of you will know something I don’t and will pass on some great info that might help me get some answers in terms of what on Earth is wrong with me or how to better manage this medical mystery of mine. I know there is a better way of managing the adrenal issue, the migraine, my lovely insomnia and the pituitary stuff, but hey, I have not discovered it yet. Whatever I am doing is pure survival stuff as I don’t know any better or in some instances have hard time changing my lifestyle or better yet my diet so that it makes a bit more sense with what my body responds to (more on that later).
So yeah, here we have it, hopefully this blog will not only help you, it will also help me. I would love that. It’s about time more things would be positive on this Earth 🙂