Migraines the sneaky kind!

You may be wondering what on earth I mean when I say “Migraines the sneaky kind” up until last Wednesday, if I had read that I would have been scratching my head as well, because surely you know if you are having a migraine right? Well no not always, read on!

What I am referring to are migraines that disguise themselves as something completely different, so that they sneak up on you. Its not until its gets to the point where you are vomiting, avoiding the light (like some kind of vampire) and your usual pain medications arent working that you suddenly realise that what you are suffering from is a migraine and you’ve got so far into the attack that there is nothing left for you to do but ride it out.

On Tuesday 18th March 2014, I had one of these sneaky type migraines. I suffer with two kinds of migraines, classic migraines with an aura and Hemiplegic Migraines where I get no warning. With my hemiplegic migraines I wake up in the middle of the night with them.

http://www.webmd.com/migraines-headaches/what-is-a-migraine-with-aura this link explains the type of symptoms you get with a classic migraine with an aura.

http://www.migrainetrust.org/factsheet-hemiplegic-migraine-10913 this link gives a brief overview of the symptoms of a hemiplegic migraine.

I call them my sneaky migraines as when they start I don’t know what they are. I am awoken from my sleep with sinus pain, severe sinus pain that goes into my front teeth. Over the course of a few hours the pain increases to the point where I feel like my head is going to explode. I self medicate with sudafed (a type of sinus decongestant), nasal sprays and rinsing my sinuses out with warm saline. Nothing stops the pain and it just keeps increasing, I start to feel sick and then the light aversion starts. This is then followed by a feeling of numbness in my face and right arm, sometimes spreading into my right leg. Then suddenly I have a lightbulb moment and realise I’m having a migraine!

 In 2009 or 2010 (sorry I can’t remember the exact year) I ended up being taken into hospital for 24 hours because I was so ill with a migraine. When I was admitted I was wearing dark glasses and had my cardigan wrapped around my head to block all light out (and yes I looked ridiculous but I just didn’t care!). The medics treating me were concerned I had meningitis or a bleed on the brain. All the tests came back clear, I was suffering from a migraine.

This migraine started in exactly the same way as the one on Tuesday night did. It disguised itself as a dry sinus infection. I was so convinced it was my sinuses acting up. So on Tuesday my sneaky migraine had fooled me for a second time.

I felt hideously embarrassed all those years ago that I had been hospitalised by a headache but then a migraine isn’t just a bad headache, as so many people that have never had one seem to believe. A migraine is the kind of headache where you would do anything to stop the pain, even if it involved cutting off your own head.

So why didn’t I recognise that it wasn’t my sinuses but a migraine that was masquerading as such? Well I’m not alone in getting the two confused the link below states in one study of 100 people that believed they had sinus trouble over 90 of them had nothing wrong with their sinuses at all, they were suffering from tension headaches or migraines

This link breaks the study down further

I only discovered all this after my migraine cleared up around 13 hours after the attack had started. I was angry with myself for not recognising the fact it was a migraine and I searched the internet to find out if other people had the same sinus symptoms during their migraine attacks. I found a wealth of information about sinus pain and migraines but this only fueled my curiosity. I needed to know why the sinuses were involved, what was the mechanism behind this. I came across this site which briefly explains why the sinuses are involved

As soon as I found out this information I shared it on facebook as I had previously discussed dry sinus pain with a few friends. It made so such sense. Sometimes my migraines that involve my sinuses aren’t so dramatic. The pain is severe, but I’m not light sensitive. The attacks will still send me to bed and I will  vomit with them.

I could never work out how it was possible to be in so much pain with your sinuses only for it to magically disappear 12-24 hours later. During these attacks I would take decongestants and rinse my sinuses with warm water to no avail. I feel such an idiot! All this time I’ve had migraines with sinus involvement. If I had taken other pain medication I may have been able to reduce the attacks, rather than solider on thinking my sinuses were playing up again.

Im not new to migraines I’ve had them since the age of 8. Since that age they have been a mixture of classic migraines with auras and hemiplegic migraines with or without auras. By the time I was 13 years old my migraines were frequent and severe. I always vomited and I would always become paralyzed on one side of my body.

 I have a memory of my mum taking me to see my gp as she ( the gp) needed to see me during one of my migraines to confirm the diagnosis. At this age I was several inches taller than my mother and probably around a stone heavier. I remember her dragging me along the road, how the hell she did it I will never know but she did. In the doctors surgery I was diagnosed with migraine and given a prescription for pizotifen / sanomigran a drug used to prevent migraines. The doctor also gave me a soluble pain killer and made me drink it there and then. Bad idea as I decorated the treatment room with an exorcist type vomit. It was then that the doctor informed me that I was also suffering with transient gastroparesis due to the migraine. She advised me that as soon as I got my aura warning me of an impending migraine attack I must take my pain medications, if I waited the pain killers wouldn’t work as for all intensive purposes my stomach would be on strike during the attack.

I am always amazed at how many Doctors and migraineurs that aren’t aware that your stomach becomes paralysed during an attack. It doesn’t seem to be very well known by either community, which is a dreadful shame as many sufferers could reduce the severity of their migraine if they took their pain medications as soon as the aura started. Obviously that only works if you get an aura, some people don’t.

Over the years my migraine pattern has changed. As a teenager they were frequent and severe. Even though at that point I had identified a number of triggers ; emotional stress, cola, oranges / orange juice, halls menthol sweets, lockets ( a type of lozenge for colds), scampi fries to name a few. As I grew older the frequency of the migraine attacks lessened. I could now go years without them. However when I did get an attack the migraines would be in clusters so I would have 2-4 in the space of a week, knocking me sideways.

I also outgrew my triggers, I still don’t cope well with menthol so avoid it, the only other trigger I have identified is emotional stress. From 2010 until 2012 I was migraine free. Unfortunately in 2012 I started on the medication fludrcortisone     (florinef) and the migraines came back in clusters. This was also a time of emotional stress which compounded the situation. When I stopped taking the fludrcortisone the migraines subsided but they were still more frequent than they had been in years.

I now manage to go several months between attacks. The last migraine I had was in November on my 40th birthday. It was a classic migraine with an aura. I’ve found with these type of migraines as long as I get my pain medications in quickly and can apply a hot water bottle to the back of my neck within an hour of having the aura I can limit the severity and length of the attack to just a couple of hours. On my birthday I ignored it, dosed myself up and tried to continue as if it wasn’t happening. I had a couple of hours where I felt pretty ropey but I made it out to my birthday lunch and had a few glasses of champagne for medicinal purposes!

With my hemiplegic migraines there is no escaping them. They will not be ignored, I just have to ride out the storm. Its the nausea and vomiting I find hard to deal with during these attacks plus the pain is just off the chart. They leave me depleted of energy for days afterwards with several severe headaches following afterwards. Thankfully I spoke to my gp on Wednesday as the migraine was starting to subside and was prescribed three types of suppositories. Two kinds of pain killers and one anti emetic as I can not hold anything down during one of these attacks. So if you are like me during a migraine it maybe worth talking to your doctor about being prescribed suppositories rather than oral medications that will not be digested if you do manage to keep them down.

With all things medical that I discuss on my blog – I am not a doctor, what works for me may not work for you. Also if your migraines change or increase in intensity then you need to seek urgent medical advice. What you think is a migraine could be a whole host of other lot less pleasant conditions such as a brain bleed, a stroke or meningitis none of which should be ignored.

And yes Nurse Frankie was glued to my side during the episode in case any of you were wondering!

I should have said glued to my feet as he kept lying on them to ensure I didn’t go anywhere!

Internet Forums / Facebook groups- where to get help when you’re new to the world of chronic illness

Everyone needs support and questions answered by those in the position to give the information especially when starting out on your journey. Joining a supportive group is key to navigating around this strange new world.

I have been part of the Internet forum / facebook group (secret / closed and open) community for quite some time now. When I first became ill and was searching for answers they became my lifeline and a mine of useful information, not a day went by without me logging onto one of these sites.

I have seen the best and worst in these kinds of groups, so for the last year or so I have stepped away from many of them. Too many “secret” groups on facebook have ended up as peoples personal power trips banning members who dare to question their authority or  they have just turned into hate campaigns against individuals.

 Stepping away from the Forums outside the world of facebook groups was for a variety of reasons mainly because I just couldn’t handle what was going on with my health and by ignoring the forums, I thought I could ignore what was going on with me. The same reason why I ignored my blog for so long. You have to admire my logic.

Its always very difficult when you are dealing with a situation when the reader is free to interpret your comment / question via the written word only. So much of what we interpret when speaking to another human face to face relies on body language and the tone of someone’s voice. In the cyber world one missing word or misplaced capital letter can lead to a whole heap of trouble! Its trouble of the kind that I would rather avoid when I am dealing with my own problems and just looking for some support / advice.

I will be honest I’ve been kicked out of three secret facebook groups. I would love to tell you some lurid tale of why I was kicked out but I actually don’t know the reason why other than the fact I was facebook friends with some individuals that the administrators on these groups did not like.  I found it quite hilarious at the time considering that facebook is supposed to be for users over the age of 13, however the admins of these groups seemed to treat it like the school playground, which is very sad when you consider the aim when creating these groups is to share information and support each other.

I would like to say that I am still a member of several private / closed groups. These are well run and not dominated by one individual. They have been created with the sole aim of helping and supporting the members of the group.

There is a world of difference between a well run Internet forum and a secret facebook group. Internet forums aren’t secret for a start, there’s no special status conferred on its members. Internet forums are not “invitation only”. Internet forums also usually have active administrators who step in at the first sign of trouble eg Medical advice being given by someone who is not a Dr, bullying, religion or politics. Believe me nothing gets people stirred up on an American Forum than mentioning the Affordable Care Act or telling them that you have no religious beliefs! Ive never done that but I have enjoyed watching the drama unfold. When you don’t get out much you don’t get that kind of drama that is normally confined to social situations or the workplace!

 Facebook secret groups don’t seem to apply the same standards as the Internet forums ( well not the ones I’ve had the pleasure of being kicked out from). I’ve watched far too many facebook administrators actually get involved in the mud slinging and then kick the victim out! Entertaining as it can sometimes be it does leave me feeling a little sad, we have so many things against us already and then we start turning on each other. It just doesn’t make any sense.

Internet forums don’t suffer from the same issues that the  facebook groups (all groups not just secret ones) tend to succumb to. With Internet Forums there are a larger number of members, so no one person can dominate the group and turn it into their own personal whinge fest. Many of the facebook groups I have stepped away from were dominated by two or three people, who seemed to decide if your question was worthy enough to be answered. I found when posting comments that if I didn’t have their approval then my question would be ignored. If it happened just the once or possibly twice I could accept that no one in the group had the answer, when it happens on every question you post you tend to see a pattern. Such was the strength of these individuals if you didn’t have a place in the inner clique you definitely felt the cold!

My experience with Internet forums has been completely different, people bend over backwards to help you. Even if someone doesn’t have the answer to your question they will reply to your post, sympathise and suggest someone who might know the answer, who you can directly message.

On Internet forums I’ve had a mostly positive experience, yes I’ve seen infighting amongst members, there always seems to be someone who considers themselves the Alpha of the pack but I’ve also seen how quickly the dedicated teams of administrators step in to squash that kind of behaviour.

Also I like the way that you can report bad behaviour to the administrators of the Internet forum totally anonymously and feel confident that unlike facebook, the Admins won’t tell the person who complained and then hold a long conversation about you in secret because they are personal friends. This is due to the sheer size of the forum membership, whereas on Facebook you are normally invited into these groups by your facebook friends. A successful administrator needs to be able to step back and see both sides without being caught up in friendships  / loyalties.

Due to the sheer volume of members the Internet forum doesn’t seem to become engaged in  the “who is the sickest ?” game, I’ve seen this played out on facebook so many times.  When did being ill become a competition? Its not a competition I want to participate in. Everyone who suffers from any disabling condition be it visible or invisible doesn’t then need to engage in this strange competition that seems to happen on these pages. It seems to be for some individuals a badge of honour to be the sickest, the one having the hardest time, one can never post without being reminded of how much worse it was for them due to a, b, or c. Believe me I know some people have a terrible time of it but since when have we been judged on how ill we are? What is it about facebook that seems to bring this out in people?

Some of you may recognise what I am talking about in the last paragraph,  some of you may think I’m a wicked, unsympathetic person. Hang around these groups for long enough and you will see exactly what I mean.

Due to the competition aspect that has evolved in some of these facebook groups other groups have sprung up, most of them containing the word Positive in their names. Having lurked on several of them ( I like lurking) it now seems there is a competition about who can be the most positive about their condition. Strictly no whining allowed on these pages. So what do you do when you are having a really shitty day and need to reach out to people? Sometimes positive messages just don’t cut the mustard.

Does anyone think like me that things are getting just a little bit crazy? Aren’t these pages set up for fellow sufferers who want help, support and advice? Why do facebook groups ( the groups that I have been involved in) seem to forget that?

Now don’t get me wrong not all  facebook groups are like this, some are very well run, particularly those that are officially linked to charities. These tend to have clear messages pinned to their page to remind members what is and what isn’t acceptable behaviour. Their administrators also seem to be much more responsible and proactive, they step in when things are getting heated. They will shut down conversations if things are getting out of hand and will warn members privately that their conduct is falling below the required standards of the community. They act in the same responsible manner that the Internet forum does.

For someone new to an illness a good facebook page / Internet forum can be a life line. It reassures you that you aren’t alone, points you in the direction of good medical information and does not hold some members in higher esteem than others. Everyone is equal on these sites and everyone is there to learn together. No question is too stupid / silly and the members of the community are there to help you.

Two Internet forums that I hold in particularly high esteem are;

this covers a whole host of illnesses / conditions, too many to mention individually and has a very good Myasthenia Gravis Forum. Without this forum  ( it was the very first one I joined) I would have been completely lost. This is the only Internet forum I use for Myasthenia Gravis. It was my mum who found this forum.

Not only is this a wonderful forum but it has a wealth of information available for people who suffer with Dysautonomia ( Pots, OI and EDS) . It prides itself on keeping its members up to date with the latest medical research papers. This is the only Internet forum I use for dysautonomia.

Unfortunately I can’t provide you with any links to Facebook groups as many of them are closed groups and you need to be added by a member of the group.
However I can provide you with the home page of Pots Pals UK which also has a facebook page.

This site provides good information for people with POTS in the UK and by joining (free) you can then access the facebook group should you wish to.

A great organisation to join that has some brilliant fact sheets you can hand to medical professionals. It also has a message board / forum you can use.

These are the sites / groups that I would recommend. Ehlers-Danlos UK also has a presence on Facebook and Twitter.

Not all groups are badly run little empires its just Ive been around the block a few times since 2007!