My Migraine Journey - My Online Diary

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My Migraine Journey - My Online Diary

Post by purple19m on Wed Feb 12, 2014 7:07 am

Hi All,

I have decided to keep an online diary/journal so I can keep track of what I am doing as well as help others and get new ideas as we know the treatment possibilities are endless we just got to go through A LOT to beat the beast of migraine but we will!!

Here is a quick overview of my history:

I had mild migraines through childhood and then migraine with aura in my late teens.

I then had extremely horrible monthlies in my early twenties and eventually was diagnosed with endometriosis which I had lasered away and after a few miscarriages finally carried my first child to the world ( thanks to baby aspirin).

My real problems with complicated migraine started after the birth of my first child, I was ill for months and after several A and E visits still had to wait a long time for a diagnosis which the neurologist eventually gave me as Hemiplegic Migraine. These seemed to go into remission and I then had my second child. I think what triggered them back was either the hormonal change after birth again or the copper coil I had fitted in April 2010, maybe both, although I don't remember getting hormonal migraine until after the coil, shame it took me 3.5 yrs to figure it out, but then it is hormone free - I never knew it could still affect your hormones, hindsight!

After trying Amitryptyline ( felt totally detached from the world on this) and Propananol (did not really give enough time) I then got prescibed Pizotifen, the difference was amazing very quickly I felt normal again, and it especially helped the dizziness I had constantly for months. It was an overnight miracle and I am now on 3mg a night. I could leave the house and go for a walk and went back to work part time.

I then had issues with chronic sinusititus and the nasal sprays prescribed oh my they mad me have daily headaches! In February 2013 I had surgery for this and although I still had the pain I was a lot less congested. After a severe migraine attack in October 2013 my DR suggested cut out gluten and I rarely get sinus pain now. YIPPEE!

However I am currently getting hemiplegic attacks when I ovulate and when I have my period which I guess ties in with the start of my Hemiplegic attacks ( I assume due to hormonal changes after pregnancy)

I have been prescribed topirimate and verapamil in the last month due to an attack during my period which ended up in me being admitted to hospital. After some discussion with my Dr. I am going to stick with the Verapamil alongside my pizotifen for now.

I hate taking any medicines as I am very careful about what I put into my body!

As my doctors are at a loss of how to stop them without hormones I am left with trying different prescription meds until something prevents them. I have tried two mini pills but not much joy but who knows I might try again will see how I go.

I hoping this diary will help me keep track of everything and also it would be nice if others decided to make their own journals on here too as I think it would help many others to follow peoples journeys. I've read so many threads of peoples symptoms online and what I need is possibilities now  Very Happy 

Feel free to read or comment if you wish but I will happily chat away to myself so no worries there lol

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Re: My Migraine Journey - My Online Diary

Post by purple19m on Wed Feb 12, 2014 7:18 am

So currently I am taking:

Pizotifen 3mg
Amitryptyline 10mg - this is just pointless but the withdrawal was awful and I needed to work, but this needs to go as I read about sinus problems and maybe this is where mine started....hmm guess I will never know!
Verapamil 40mg, need to up this to 120mg a day but wanted to check side effects first so far just tiredness is the only one I've had but I have gone through a really rough time the last few weeks so who knows could just be the migraines making me tired.

B2 350mg - Just started this on 31st Jan
Centrum Multivitamin- Taken for about 2 years
Seven Seas Omega 3 - if I stop this my migraines start appearing randomly after a few weeks so it must be doing something.
Magnesium Citrate - I took this for a few days and as my migraine has been bad this week I got paranoid it may have other ingredients causing problems so haven't took today. I do make myself laugh.
FeverFew - Just started this.

I am a bit worried I am starting too many things at once and will not know what is helping so I am thinking I may just stick with the multivitamin, omega 3 and b2 for 8 weeks and keep a diary and then add the magnesium and feverfew in one at a time.

I've actually perked up today after a nasty attack so I can think clearly now and be sensible about what I am doing.

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Re: My Migraine Journey - My Online Diary

Post by purple19m on Wed Feb 12, 2014 7:34 am

And I am now going to list my cycle dates from June 2013 as this will help me with the proper diary I am now going to keep (wish I done this a few years ago! Oh well better late then never!)

20th June -M
30th June -3rd July - O - migraine on the 3rd
20th July P - migraine
1st-7th August -M
11th-14th Aug -O -migraine on the 14th
16th Aug - Coil Removed - amazing difference in mood overnight.
13th Sep - P - Mild Migraine
23rd-26th Sep -O -No migraine
8th October - M
18th-21st October - O - lMild migraine on 21st
7th Nov -M - Severe migraine unable to do anything but sleep - this week I spent a week eating oats and then my DR suggested Celiac, test came back negative but I have definately felt better daily since not having gluten.Although I've had a few slip ups....oops.
17th-20th Nov - O
18th Dec M - Migraine
28th-31st Dec O - Migraine on 31st and 1st Jan 2014!
20th Jan -M - Severe Hemiplegic attack for which I was hospitalised for. Then realised I cannot carry on like this and I have to put extra effort into preventing these.
30th Jan-2nd Feb - O - Maybe why this episode has been so bad as I only had one good day in the last few weeks and that was the 29th, suprise suprise!! I always perk up and get loads of energy before my attacks start....Least the house is always tidy so I can rest when they get me!.

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Re: My Migraine Journey - My Online Diary

Post by purple19m on Wed Feb 12, 2014 8:02 am

So quick run through of the shameful diary I have kept lately Embarassed Embarassed 

This is going to change of course!

13th Jan attack started to build up to the point where I could not speak or walk well and my Dr. decided it was best if I got checked in the hospital on 21st Jan, stayed the night and neurologist prescribed me topmax to start.

23rd Took Topmax at 10am - I felt depressed, exhausted and kept crying.

24th Woke up feeling awful and did not take Topmax

25th Took Topmax at 6pm after dinner, mood ok but got little shocks all over, my throat was sore, sinus congested and sinus pain.

26th Felt depressed, crying, exhausted, sore throat, terrible sinus pain. Migraine worse, struggling to walk round and took a baby aspirin which took the edge off.No Topmax taken

27th - Good mood, more stable on my feet.Sinus pain went away late afternoon and no headache pain. Legs achey and mild aura.
Took a baby aspirin that helped again. Tried half a Topmax and got tremors!

28th Mood ok, quite unstable on my feet and a lot of sinus pain! Did not take Topmax. Took aspirin again.

29th Felt great, mild sinus pain. A lot of energy and really great mood.

30th Woke up feeling very tired. Sinus pain gone - guessing Topmax side effect?? Just mild cold symptoms.

Aura started at 10am after a tipr to Tesco_lights!!. Baby Aspirin, Naproxen 250mg and Paracetamol taken.No headache pain but I have aura and hemiplegia and am totally exhausted.

31st - Left sided weakness and very tired.

4th Feb - prescribed Verapamil after being told off for not giving Topmax a good go, well i'd rather try something that does not have a huge list of side effects thanks and who knows maybe I will try again if needed when I feel a bit better and can really see whats going on.

5th Feb -Started 40mg Verapamil felt totally exhausted all day, left sided weakness and aura.

6th Feb - Took 40mg Verapamil in morning again felt exhausted,some aura and left sided weakness.

7th Feb -Can't even read some of my writing for this day! Migraine Joys! Weakness on my left side.And just realised my dates and days are all muddled too, says it all really.

Boiled eggs with tomatoes and cucumber for breakfast
Bowl of chopped pineapple for lunch
Nuts and Dried fruit for snacks
Tikka Masala for dinner.

9th Feb - Felt tired all day but mood great and had a nice evening.
Roast dinner,yummy!

10th Feb - Awoke with left sided weakness,felt depressed,stressed, jaw pain, pain behind my ear, found lights to really bother me today. Took Verapamil.

Finally I made some of my jumble make sense...I think.


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Re: My Migraine Journey - My Online Diary

Post by purple19m on Wed Feb 12, 2014 8:12 am

So today I have now realised is Tuesday 11th Feb - my I must be getting better, don't know where the last month has gone, didn't realised how bad I have been feeling since I perked up suddenly this afternoon, yay.

I woke up at 7am and my left side felt weak and my neck was very stiff, jaw hurting, feel pressure too, pain behind left ear, shoulder and arm.

Took Verapamil at 8.30am

Started feeling very confused, extremely depressed and had racing thoughts, then randomly started singing I do like to be beside the seaside! just here and there, felt like I was going crazy and then my left side became weaker and my eyesight distorted on the left side.Had some nausea, miled headache.

Had boiled eggs, cucumber and tomotes for breakfast.
Home made vegetable soup for lunch and took 250mg Naproxen about 1 hr later suddenly started to feel better after my neck done a few random cracks inside.
Had a pear for a snack.
Had few cups of tea today.
Plenty of filtered plain water - keep the sweetners out of my body.
I have been naughty and had a pancake (very bad for me) and a few white choc buttons, I blame the kids lol

Now I can write, think clearly, my mood is good and my energy levels are better so fingers crossed i'm out of migraine world tomorrow and I open my eyes and feel like me again.

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Re: My Migraine Journey - My Online Diary

Post by Sarah on Wed Feb 12, 2014 9:16 am

Hope keeping the diary helps you. Smile

I'm interested to hear that you've suffered from endometriosis, as I have too. I have definite signs of oestrogen dominance: a history of endometriosis, fibroids, and melasma on my face, despite never having had children.
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Re: My Migraine Journey - My Online Diary

Post by purple19m on Tue Feb 25, 2014 7:03 am

I've not updated this for a bit as been poorly...BOOO!!

Had my monthly on the 18th and didn't wake up feeling too bad. Then I had a bowl of rice krispies and all of a sudden i felt so exhausted all I could do was sleep.

I woke up at lunchtime feeling rubbish but better then before and then had omlette with toms,onions, and spinach and again I felt like I could not keep my eyes open. Went to bed for a few hours but couldn't sleep.

A few days I felt jaw pain and my body was aching so much I could not get comfortable, I felt irritated laying, moving, standing nothing would help.

The jaw pain was getting worse, then pain started in my neck,shoulder and down my back, an especially sore point on the left hand side at the bottom. All pain has been on my left side, none on my right. I started to take naproxen to help with the pain.

I then researched a bit more on the Verapamil and saw some reviews saying about neck pain and pain at the back of the head so I stopped taking it to see, but only had a slight improvement in pain through the back but not so much in the jaw.

I avoided eggs and milk after responding so badly too them and went to see the Dr as noticed symptoms of sinus infection and thought that could be making everything worse, he prescribed some anti-biotics.

So I have almost finished the antibiotics and am back on the Verapamil which has increased and I will monitor the pain and see how it goes. My jaw is still casuing me a lot of misery especially when I talk too much even though I am regularly taking naproxen.

I have booked a dentist appt for wednesday to see if there is a problem with my teeth, I have a silver crown on the left hand side and keep wandering if this is a problem. But it is just another possibility.

So I will get my teeth checked, try and eat healthy and carry on with the verapamil and see how things go.

Interesting about the hormones as I am told that I can only have the progestrogen only but when I look back I was given Norhisterone pill to help with my endotremetriosis and this is what triggered my first hopsital visit with migraine, if only I never took them, I wander!

The same as my the first time I ever had jaw pain was after my crown was fitted.

I am starting to feel like I need to go down other avenues then just my local doctor, like nutritionists etc. My doctor thinks that the pain in my jaw right now is due to migraine but I feel like I am going round in circles right now trying to work out what symptoms are from what, feel so frustrated. Sad 

Just wish I had a doctor that I could have a set plan with and who would stick with me and work through it with me and look at other options then pills. But then my body is my responsibility so I will have to figure this out for myself it seems.

Oh well keep plodding along and eventually I will make it.

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Re: My Migraine Journey - My Online Diary

Post by purple19m on Tue Feb 25, 2014 7:07 am

Just checked the calendar and my next Ovulation migraine is due on 26th so be interesting week...lets see what happens!

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Re: My Migraine Journey - My Online Diary

Post by Sarah on Tue Feb 25, 2014 8:53 am

Sorry to hear you've been feeling rough.

I am shuddering at the memories of norethisterone. When I had it I went absolutely doolally and unhinged. I actually felt suicidal.  Shocked This was years ago, but I have refused to take any sort of hormonal drug ever since.

You might have TMJ disorder, which I also have, rather than it being your teeth themselves that are the problem. Hope not, as a tooth would obviously be much easier to deal with!

I'm trying a few things at the moment, so I'll update if I get any relief.
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Re: My Migraine Journey - My Online Diary

Post by purple19m on Fri Feb 28, 2014 2:58 am

Yesterday I saw the dentist and she said my teeth do look fine but if problems continue we can look at removing my crown as this has a  root canal and I had so many problems with it over the years, so thats another option.

TMJ is looking likely and am doing my best to do the jaw excercises and rest it as mush as possible. It is getting better but very slow process.

I have been looking into mercury as a cause as I have a few silver fillings but need to do a lot more research and a saliva test before I even think about paying to replace them.

I ate some eggs yesterday and a few hours later I had sinus pain so they may be the cause of my recent sinus problems, I will try them in a few days time and see if I get the same response, still staying off the milk for the time being.

Today I can feel migraine lurking but this has been expected due to ovulation I have been taking paracetamol and naproxen, feel very tired but only slight weakness in left side and speech ok so that is am improvement, just hope it stays that way.

I have enquired about bio-feedback and have found a place 30mins away that use the Asyra Pro machine to do it and am waiting for them to call back. Worth a try.

I will keep updating as this is helping me stay focussed with what I am doing.

I hope you find something that works too, its a long journey but I am convinced there is something simple causing all my issues, and I plan to hunt it down. Fed up just treating symptoms so I am on a mission to find the cause. Never give up.

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Re: My Migraine Journey - My Online Diary

Post by purple19m on Fri Feb 28, 2014 3:02 am

Today I have eaten:

Rice for breakfast - i know this is strange but trying to stay off eggs,milk and gluten to see how my body is reacting to all so only a temporary thing and I am gradually trying different things to check reaction.

Beans with potato waffles - no issues

Banana and Pineapple - no issues

Tried some burger but I had bad headache morning after - no red meat is a sure trigger.

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Re: My Migraine Journey - My Online Diary

Post by Sarah on Fri Feb 28, 2014 9:16 am

I totally agree with you on trying to find out the cause, rather than just trying to manage the symptoms. I've always felt that way.

I have heard that removing mercury fillings can cause more harm sometimes, due to the rapid release of it during the removal process. Luckily I no longer have any mercury fillings, as they've all been replaced gradually. Mind you, I often wonder whether they are more or less harmful than the plasticy white ones!

Best of luck with it x
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Re: My Migraine Journey - My Online Diary

Post by purple19m on Thu Mar 06, 2014 7:49 am

Saturday 1st March - I had an ok day and managed to go out with friends and family.

Sunday 2nd March - I felt exhausted all day but put it down to a late night saturday and I had pain through my jaw and back but this may be due to being on my feet all saturday night.

I had beans and waffles about 11am and then a roast at 5pm and no issues.

Monday morning I went into work although I was tired and had jaw, neck and back pain which was a mistake as I was in a lot of pain by the time I left.

Monday evening another migraine began but no warning sign, my speech started to go and that is the first I realised it was coming and pain just hit like a band round my head and I hardly slept all night because of this.



Tuesday morning I woke up with migraine, back pain and vision distortion on my left side, saw the Dr and she is writing to the neurologist to get advice on medication but in the meantime I will continue with Verapamil at 120mg. Signed off for two weeks. She thinks all my back pain etc is related to my migraine but I disagree as although I have had jaw pain before this pain is different and goes right down my back making it painful and stiff when walking. Unless this is what the Verapamil is changing my migraine.
No issues with work as my manager is very understanding of my condition and I am very lucky to have her support.

Wednesday I found it difficult to get out of bed, jaw pain has gone down somewhat but still getting some flushing in my cheeks and my teeth feel irritated, specially when biting down on my crown (root canal). Vision issues on the left side - still trying to find a way to decribe it but its like a constant shadow on my left side and when I am put walking everything on the left looks different, very strange. I took a short walk home from the school but felt awful when I got back, had some rest and perked up a bit but vision still strange on the left, it really bothers me. Weakness on the left side again today too, I know this as I feel nervous picking up hot saucepans!!


I have booked the Biofeedback appt for the 18th March.

Saliva Test ordered to check mercury in the mouth.

I used the multimeter and the two teeth concerned showed -74 and -83 millivolts and I found an article which stated that anything out of the range of -5 and + 5 is a good indicator to get the teeth removed, trying to find more evidence about this at the moment.

Hopefully by time I done the tests and spoke to the nurse I will have more specific options to go down.

Otherwise next thing is a hair analysis test but hoping this won't be necessary after the biofeedback appt but we will see.

Fingers crossed I sleep tonight, always get insomia with my migraines which is such a pain and i'm always advised to sleep them off by people, if only it worked! Hopefully I can sleep tonight and wake up feeling good tomorrow as I'm taking so much meds I should be cured!

Staying positive that I will find an end to this or just away that I can live life with them Smile

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Re: My Migraine Journey - My Online Diary

Post by purple19m on Wed Mar 12, 2014 1:19 am

Still feeling tenderness around my root canal which is crowned and have again tested with a multimeter.

Crown - minus 150 millivolts
Filling - minus 55 millivolts

I have performed a saliva test which showed mercury and copper. This is worrying as I had such problems with the copper coil messing up my cycles and making my headaches worse.

I have a dentist appt booked for thur.

I have been feeling generally unwell since I last updated and weakness down my left side and my jaw feels uncomfortable, I feel so exhausted I have fallen asleep a few times in the day.

I also still have the vision problem on the left side only.

I will update with more detail when I perk up, I wander if the verapamil is making me so exhausted. Just want to feel normal again.


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Re: My Migraine Journey - My Online Diary

Post by purple19m on Tue Mar 25, 2014 8:00 am

Time flies as usual, I have trouble updating when I feel so unwell!

Well since my last update I have had a tooth with a root canal removed as I was convinced it was contributing to my jaw pain, although my dentist totally disagreed but being a good dentist agreed to follow my request, it was a rough removal and took 45mins to removed and became infected and I had to have a course of antibiotics and take painkillers for a week. It is almost there now, but still annoying me now and again.

My jaw pain has much reduced since removal and my neck and shoulder and ear pain have vanished. The strangest thing is my daily left side weakness has reduced to almost none - maybe coincidence. So hoping my risk has paid off somewhat. Was hard decision to make losing a tooth but I will do anything to improve my health.

Still not decided about the mercury yet though but it is still an option.

Next I attended the Bio-feedback appt which I found very helpful and I was so skeptical but seems I may have been proved wrong.

The outcome was:

Lack of digestive enzymes and good bacteria in the belly.
Not absorbing any minerals and magnesium is a chronic issue, my vitamins are being absorbed though.
It found hormone and neuro imbalances also.
Not many food issues came up, although beef came up which I always get migraines after eating the next day - there may be some truth in the Asyra machine.

I have magnesium supplements but no point taking them if they are not being absorbed so I have started taking Bioglan probiotic to help with the bacteria issue and also drinking lemon juice in warm water daily to help the enzymes break down my food - I'm hoping in time I will not get so many food reactions and my minerals will be absorbed which will lead to better balance in the hormone department.

I started my cycle on Saturday and although I felt exhausted had minor symptoms of migraine in the background but was able to do my normal activities, today I have had very minor migraine which started off as depression yesterday, not any aura either just minor speech issue and the headache with exhaustion had a nap this morning and have managed on nurofen and paracetamol today so not as bad as usual.

So I feel like I am making progress and taking action to get myself better, bit annoying I feel so tired all the time I don't know if that is the Verapamil or just how unwell I have felt the last few months. Time will tell I guess.

Just going to keep on putting in the effort as one day it will pay off i'm sure.

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Re: My Migraine Journey - My Online Diary

Post by Sarah on Thu Mar 27, 2014 1:09 am

Ouch at the tooth. Sounds like it was worth doing though.

I'll be interested to hear how you get on. I need to take probiotics again, but always get a lot of detox reaction, so need to build them up gradually. I've got some ready in the cupboard to take when I feel like I can take them.

You ought to be able to to tell if you are absorbing magnesium or not because, not to put too fine a point on it, it goes right through you if you don't absorb it. I have a problem with magnesium absorption too. There is a thread here somewhere that I'll find for you. It's a long thread, but my updates at the end are the main stuff I was thinking of: http://migrainetalk.forumotion.co.uk/t77p60-magnesium-treatment#5089
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