Hemiplegic Migraine – The Basics

This is such a nice article to explain the basics of HM....


To understand Hemiplegic Migraine, we have to understand that Migraine attacks are episodic manifestations of a genetic neurological disease. Migraine can present in a variety of ways. Hemiplegic Migraine is a rare form of Migraine, made more confusing by there being two variations: Familial Hemiplegic Migraine (FHM) and Sporadic Hemiplegic Migraine (SHM).

Both FHM and SHM often begin in childhood and cease during adult years. Diagnosing FHM and SHM can be difficult as the symptoms are also indicative of vascular disease and can be thought to be stroke, epilepsy, or other conditions. A full neurological work up and careful review of medical history and symptoms are necessary to rule out other causes and confirm a diagnosis of FHM or SHM. Family medical history is especially helpful in diagnosing FHM.

FHM and SHM share the same symptoms, which will vary among different Migraineurs. The difference between the two is that FHM can be traced back in the family history and has been linked to mutations of specific genes on chromosomes 1 and 19. SHM is FHM without the familial connection and that particular genetic mutation.

Symptoms of FHM and SHM:
Episodes of prolonged aura (up to several days or weeks)
Hemiplegia (paralysis on one side of the body)
Fever
Meningismus (symptoms of meningitis without the actual illness and accompanying inflammation)
Impaired consciousness ranging from confusion to profound coma
Headache, which may begin before the hemiplegia or be absent
Ataxia (defective muscle coordination)
The onset of the hemiplegia may be sudden and simulate a stroke.�
Nausea and/or vomiting
Phonophobia (increased sensitivity to sound) and/or photophobia (increased sensitivity to light)
Treatment of FHM and

http://www.achenet.org/resources/hemiplegic_migraine__the_basics/

Although I have not had a diagnosis that identifies which type(s) of migraine I have, I think Hemiplegic Migraine is the best fit.

• Auras lasting up to half a day or more
  
• Weakness on right side
  
• Impaired conciousness - Confused states, including fugue states
  
• Headaches
  
• Ataxia - appear quite drunk
  
• Phonophobia, photophobia & osmophobia

Strange that when I consulted a highly regarded neurologist he was adamant that auras never last longer than an hour and seldom more than 15 minutes. In fact when I told him they often last more than 2 hours, he told me I was lying. Likewise he told me that apart from Transient global amnesia (TGA) memory loss is unknown. So little does he know

And to think I had to pay almost NZ$1500 to find that out

OMG.......... ask him to contact Professor Goadsby (now in the USA) there is something called persitant aura - and you can have it 24/7 for years......... I have had auara symptoms for 6 years now.........

You do wonder about these doctors sometimes..........

I'm kind of reluctant to do that as he charges $450/hr with a minimum of half an hour charge. I am required to see him as a private patent as the peculiarities of our health system means I don't get any subsidies to see him for migraines. Even a 5 minute conversation my GP had with him cost me $125.

As I can't work, and my wife only works part time and I get no assistance at all, I really can't afford his charges. I'm seeing my GP this afternoon and one of the items on the agenda is to discuss what specialists are available to me under our health system. I'm not sure what the outcome will be as he has in the past told me that there's nothing much more that can be done for me.

Saw the doctor today. Well actually it wasn't my usual GP as he was unavailable. I saw my old doctor (now retired, but helps out as needed). I took along a printout of the page that Tee had linked to in the 1st posting of this thread. He was quite intrigued as the symptom match many of my migraine attacks.

Partially as a result of the article, the doctor has taken me off the caffergot. He'a also taken me off the propranalol (due to Raynaud's disease), so I'm back to no meds at all.

I had a chat to him about what else we could do to get my migraine under control, and he concurs with my regular doctor: that unless I have very deep pockets (I don't) there's nothing else available. Our health system just doesn't cater for "oddball" (his words, not mine) forms of migraines such as I have.

OMG in one breath I am pleased that he took you serious and on the next I am deflated.......... just to leave you hanging like that is cruel........

I do not know how the system works out there...... but just to leave you as your an 'odd ball'

Are there no neurological doctors available at all?

Where are you in NZ - I have access to a top Epileptic doc who came from NZ... its a long shot but I can ask if he knows of anyone???

Tee x

Piwakawaka: I have done a little research for you and found a lady called Annette Hallam - I have emailed her for you - but here are the details - not sure if you have hand contact with these people before?

21 Roberts Avenue
Bayswater, Auckland
New Zealand
Tel: +64 9 446 6229
Fax: +64 9 446 6229
Email: annette at migraine dot co dot nz
Web: www.migraine.co.nz
Contact: Annette Hallam

Thanks Tee. I'm off to hospital in half an hour for an operation to remove a large kidney stone. Back home tomorrow. Will follow up then.

Piwakawake - I have spoken to Annette - the system out there is not good but she said you can call her either in the evenings or one weekend - she has a fab background and has been involved with Migraine support for over 17 years - she was on the Council of the WHA World Headache Alliance, meet and worked in conjunction with Dr Anne MacGregor City of London Migraine Clinic and also with Migraine Action UK - her details are: Annette Hallam, Migraine Support NZ 2008 - Tel: 64 9 4466229 - she is in Aukland.

I do hope she is able to help.

Tee

PS Hope the operation went well x

Thank you Tee. I'll try contacting her this weekend.

Re the operation: It was postponed as the hospital staff noticed I was staggering. I told them it was just a migraine, but no go. I was kept in observation overnight and finally released mid afternoon with a prescription for Nortripyline and advice that I will be getting another EEG soon (which probably means some time between now and Christmas if I'm lucky).

I have a feeling that I've been on Nortriptyline many years ago, but can't remember why it was stopped. I'm starting at 10mg per day increasing to 50mg over 5 weeks.

oh no... poor you..nothing worse than getting worked up about an op and for them to cancel

There is a thread on here about Nortriptyline - not one I have tried - |I was another one in the group Amitritaplin and it made me very sleepy... hope this one works for you x

Tee: I suggest you edit the posting above where you provide Annette's email address. It's too easily gathered by email address harvesters in its present form. Either remove the address completely or munge it so the real address can only be deduced by a human. Something like annette at migraine dot co dot nz. I would hate to feel responsible for her getting an increase in Spam.

Done - I forget the outside world can see this sometimes ..... did you call her?

I emailed her, but haven't heard back as yet. I'm not particularly good at expressing myself on the phone, forgetting most of what I want to say, and making a mess of the rest. With email I can spend more time considering what I want to say.

I also checked out the migraine.co.nz website. Pity it's not as active as this one.

Tee: I have emailed Annette twice but have had no reply. It turns out her email address is plastered all over the Internet, so my suggestion to munge her address was a bit pointless. She probably gets dozens of spam messages a day.

I also had a look at migraine.co.nz, but it doesn't seem to have been updated for a very long time. I tried using the contact form on that site, but all that happened was that I got an email warning of a possible phishing attempt. The email header gave me a gmail address for Annette, so I sent a message to that address advising of the problem with the contact form. I tried again on several occasions over the next few weeks but with the same result. A week ago I stopped getting the phishing emails, but as yet I have had no reply. Seems to me that the site is dead.

I guess I'm going to have to take the bull by the horns and phone on a day when I'm thinking clearly and I'm not tongue-tied.

Phoned this morning, but had to leave a message on an answerphone. Still waiting for a reply