Hi, new to this forum. Complex/HM Migraine, Hormonal Link

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Hi, new to this forum. Complex/HM Migraine, Hormonal Link

Post by Fifi Trix on Thu Jun 09, 2011 7:55 am

Hi everyone,

I have taken a little time to read all the other posts, and it makes you feel so much better. I am not mad!

I am a 40 year old mum of 2. Have had migraine since 18 years of age.

Initally my migraines were quite infrequent, they would come with what I would describe as a common aura of visual disturbance, nausea and then vomiting. Then the killer headache, which only sleep could resolve it. At that time I didn't even know what a migraine was.

During my twenties I would average about once a month. Then in my thirties, a change, they began to creep up on me without any visual warning. Instead I would get sinus and jaw pain, and the nights sleep wouldn't resolve it. They began to run into two or three days, two to three times a months.

This prompted a visit to a GP, and propanonol as a preventer.

Things have really gotten worse in the last three years. In 2008 , whilst having a migraine, the right side of my face drooped and felt numb and I was slurring my words. I saw an out of hours Dr and was put on pitzotofen, increasing in dose until I stopped it in September 2010, as it was just making me fat and grumpy, with a migraine a week. I now have a strange aura where I feel that I have burnt the top of my head. My mouth droops before during and even a few days after the headache. And, the begining of the year...big change... mouth drooped...lost for words, right leg went heavy buzzing in right arm and when I went to walk I really had to concentrate. I was admitted and diagnosed with Hemiplegic Migraine. I had an MRI scan to ensure that this was the case.

I now have this type of migraine, plus other types. I am on topiarimate, which I believe is helping. I beleive there is a connection to a problem with a neck injury and more importantly hormonal fluncuations. I keep a diary, and can now see to peaks in my migraines, mid month and two days before a period.

Since taking the topiarimate I don't feel as weak, but I seem to have a lot of right sided pain, particularly the leg, calf are I am down to 2 to three migraines a month, but these migraines, with the face, can now last 5 days ( and improvement on 10 days). I also take Maxalt Melt Triptan which is a god send if I take early enough, but only deals with the headache.

I am off work just now with this but hope to get back soon. I have seen two neurologists to get to the bottom of this. The first one sent me relaxation exercises through the post, told me yes I had migraine, but I had functional weakness aka its all in your head , and I was depressed. Love that these experts can tell that about a person they have just met! Mad

Triggers! Well what isn't.

Fifi Trix

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Re: Hi, new to this forum. Complex/HM Migraine, Hormonal Link

Post by whitzendJane on Thu Jun 09, 2011 8:15 am

Hello and welcome...I am glad you found us.

I am sorry but the neuro said WHAT!? That makes me feel quite angry.

I take it they weren't a headache specialist because I cannot imagine (or hope I never hear of one) saying the weakness was 'in your head'.

Glad the meds are helping, it is a really good sign if they are because it means you are responsive to treatment.

I would suggest you look up the list of specialist headache centres on the forum, (if you haven't already done so) and you could ask your GP to refer you to one of those?

It can take sometime and fine tuning to get the med levels correct and for them to get properly into your system..I was always told give each new drug approx 4 months once you get to the required dosage etc.

I am glad you know you are not mad and definitely not alone..am sure the others will be along soon to welcome you.

Any questions please ask away and we will all do our best to help.

Jane
x
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Re: Hi, new to this forum. Complex/HM Migraine, Hormonal Link

Post by Fifi Trix on Thu Jun 09, 2011 8:25 am

Yes, he didn't say in so many words but even though I was having a migraine at the time and my mouth was drooping he told me that my symptoms were functional and advised me to look at a website called neurosymptoms.org, which if you look at you will see what I mean, especially the bit about the other names for functional weakness, and what to tell my employer. This was the follow up appointment that you get after you've had the two day hospital stay. I thought he was going to sit me down and talk to me about HM.

My GP was furious, he hadn't even heard of functional weakness, couldn't believe that I was told to look at a website and with his support we both looked at the neurologists in my area and I went private with one that he advised specialised in headache.
He was great. I suffer from a variety of migraines and we are working with topiarimate just now but will review it, as you said in a few months if it really isn't working for me.

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Re: Hi, new to this forum. Complex/HM Migraine, Hormonal Link

Post by Tee on Thu Jun 09, 2011 8:53 am

Hello and welcome Very Happy

I am so sorry you have such a rough ride and unfortunately your story resembles a lot of others - so you are certainly not alone.

Jane is quite right (as normal Smile ) a headache nero is the best - your experience makes me go GRRRRRRRRRRRRRR Bad day I too had one say to me it was all in my head and that I needed Physiatric Assessment - thankfully my husband was with me and snapped at the doctor I was the most sain person he knew!! Mexican wave for hubby's: I just sat there crying lol. And yes we sacked him and found another one Smile But it does make me so cross that they do not listen and understand or even think its migraine. There are some very good ones out there and if you do not get on with the one you have please do shout - I am sure someone can recommend one close to you Smile

I am pleased the meds are helping a little - meds are a tricky one to crack and each persons experience is different. There is no one pill fits all, and again as Jane has said - give them a good go. There is a lot of posts on them, but please do ask again if you need to.

Tee x

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Re: Hi, new to this forum. Complex/HM Migraine, Hormonal Link

Post by whitzendJane on Thu Jun 09, 2011 9:07 am

Arrrghhh..thank goodness for your GP!

Topiarimate can be really useful as long as you can tolerate it. It's a weird one either your fine on it or your not. The fact that you are doing OK bodes well for you.

I just had a quick look at neurosymptoms.org some of it was really interesting, they do state that it is 'not in your mind' but you can help to manage the symptoms using cognitive techniques (much as you can with any illness).

I liked the description of 'derealisation' and 'disassociation'. Unless I have mis-read it due to 'brain fog' they are saying that the more anxious you feel about illness (and this is any illness not just neuro ones) the worse your symptoms feel. So the illness is real but the better the patient can understand their symptoms then the better the person can manage their problems/symptoms.

Hope that makes sense? However you need someone who will explain things not point you to a website. Although we share many symptoms and triggers most of us here have the odd random ones too that are unique to us
What a Face
Your illness is 'real' and not your fault but it sounds like you are making promising progress already. Anyway as you have already probably read..they have proved there is a genetic link with HM now.

I hope I am making sense..my head really aches tonight again lol.

Keep plugging away you are doing really well.

Kindest regards
Jane
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Re: Hi, new to this forum. Complex/HM Migraine, Hormonal Link

Post by Fifi Trix on Thu Jun 09, 2011 9:18 am

Thanks Tee, I was also in tears, iIhave sons, but if I had daughters I would would be encouraging them to join the medical profession and specialise in neurology, it's such a male dominated speciality and thats a problem.

My new neuro gave me his email address and has sent me lots of articles to look at to help me understand my illness. You know couple of hundred years ago doctors used to think that the cure for females with migraine was marriage. What is it they say, oh yes LOL.

Initally yes when I looked at neurosymptoms I was taken in, then read it again, then researched the fact that I shouln't have been diagnosed with this if there was anything else going on i.e. migraine, and also, the fact that if you have to fill in any form for disability and when I saw my occ health Dr , its not functional weakness its conversion disorder, when I said that to my GP........

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Re: Hi, new to this forum. Complex/HM Migraine, Hormonal Link

Post by Tee on Thu Jun 09, 2011 9:34 am

aww that just reminded me of my son......... aged just 6 he said to me one day "I am going to be a doctor" - I said "wow thats good" ....... he replied - "yep and then I am going to cure you" and yes I cried Sad

You sound like you have a good neuro - email contact is very good Smile

MARRIAGE toooo funnny - I know a fair few ladies who say the hubby is the the trigger LMAO - Must say I have a wonderful one Smile

I will have a look at the website tomorrow - head hurts a little tonight - but it sounds interesting - I have never heard of it ....

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Re: Hi, new to this forum. Complex/HM Migraine, Hormonal Link

Post by Sheena Hulston on Thu Jun 09, 2011 8:58 pm

Hi Fifi Trix
I have 11 O levels and went to an all girls Grammer school, but sit me down in front of a load of words now and I have to read them 3 times now!! Brain wont take them in any more!! So don't give ME a web page to read unless its on a good day!!!
I too was told "Im sure your in pain but there is nothing medically wrong with you" Im sure most of us have been told its in our head.....its a migraine after all..... bounce
HM is shocking when it hits you I had never even had headaches before mine hit me although I had car sickness as a child and stomach migraines.
I take topiramate (make my fingers and feet tingle) and also my wonder drug ,at the moment, Flounarozine, although it makes me soooo tired but better that than pain Shocked
Its taken 2 1/2 years to sort me out so no quick fix but you get there..........my auras not got better( droopy face arm and leg) but my Dr has told me when I settle on these new pills there is a pill to help for the AURA!!!!!! Cant wait for that one xxxxxx if that works I can get driving and people will stop staring at the odd freak who walks fine some days and like the hunchback other days LMAO x
With my dark glasses on in the rain x x x

Good to hear from you babes

Sheena on a good day x
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Re: Hi, new to this forum. Complex/HM Migraine, Hormonal Link

Post by Tee on Thu Jun 09, 2011 10:56 pm

SHEENA - Do you known the name of the drug which is to help with aura?

PS I love fluarazine too
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Re: Hi, new to this forum. Complex/HM Migraine, Hormonal Link

Post by Sheena Hulston on Thu Jun 09, 2011 11:27 pm

No Wish I did Dr S promised it too me in march and said I would get it as soon as I settled on Flounarazine so asked him when I emailed him, he said not to upset pills at mo so guess I have to wait till I see him in October Crying or Very sad
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Re: Hi, new to this forum. Complex/HM Migraine, Hormonal Link

Post by Sheena Hulston on Thu Jun 09, 2011 11:28 pm

Meant to say so you can ask him when you talk to him x
Sheena x
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Re: Hi, new to this forum. Complex/HM Migraine, Hormonal Link

Post by Tee on Thu Jun 09, 2011 11:48 pm

OK - Thanks - I see him in August - I will add it to my list of questions. I was told by the MA that there was no one drug for aura but to take the vitamins etc to strengthen nerves, so I am really interested in this, as my aura needs to get sorted, it is worse than the head pain now Sad
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Re: Hi, new to this forum. Complex/HM Migraine, Hormonal Link

Post by onandoffagain on Fri Jun 10, 2011 6:31 am

Hi and welcome,
I was just reading about functional weakness and I think it makes sense, if we have fhm with a prolonged aura, there wouldn't be any actual disease or scarring of the brain (in most cases i think) but the nervous system is still not working properly, so that would fit i think. To me it doesn't read like its made up, but that it is not caused by a disease or damage to the brain. But I do have a habit of reading what i want to read! xx Wink

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Re: Hi, new to this forum. Complex/HM Migraine, Hormonal Link

Post by Fifi Trix on Fri Jun 10, 2011 7:19 am

Once I saw my second neuro he explained that I did have functional weakness i.e. my leg didn't work right but there isn't anything wrong with it , it's a software problem in the brain caused by migraine.Funnily enough he said that sometimes the functional symptoms that can come along with a migraine can be quite tricky for some (perhaps less experienced) neurologists.

This website was created for people with these symptoms when they didn't have a reason for having them and, as we all know migraine is a big reason.

Dr Stone the author of this site has a few critics. Some people are of the opinion that sometimes things are on occasion medically unexplained. However he does say that to diagnose this on it's own, you have to rule out everything else. This first neuro wanted to send me to a neuro shrink, I didn't even know such a person existed!

This other medication that you are on with topiarimate, is it a preventer as well?

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Re: Hi, new to this forum. Complex/HM Migraine, Hormonal Link

Post by Sheena Hulston on Fri Jun 10, 2011 8:29 am

No Read about it on Medication and treatments its just not licensed in uk i get it free on NHS but only through my consultant in London.
Its only a calcium blocker that they found that worked for migraine.
Sheena x
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