Hi all,

Just a little worried about my migraines and thought someone might be able to offer some help?

I've been getting familial hemiplegic migraines since I was 7 years old (now 22)... I had an attack on average every 3 months and no more often than once a month.  My attacks start with numbness in the toes spreading the whole way up one side of my body, often one side of my body would go numb then go back to normal, then the other side would start to go.  Some attacks left me completely paralysed for hours.  about an hour after the numbness starts I begin to feel nausea, followed by the severe headache maybe 30 minutes later.  I am violently sick until even the stomach acid has been expelled from my body, the vomiting usually lasts anywhere from 6 - 24 hours.  The headache is excruciating and I began to have hallucinations with it when I was maybe 10 or 11. I think it was my body's way of taking my mind of the pain! Occassionally I get blind spots, always I become very photosensitive, always  I become extremely confused and disorientated and sometimes my speech gets scrambled.  They didn't seem to have anything to do with my menstrual cycle and I've never really identified a trigger (despite keeping diaries for this specific purpose).

When I was 16 the attacks became less and less frequent.  My mum, 2 brothers, and numerous aunties, uncles and cousins also get migraines and many of them have 'grown out' of them.  At 18 I had my last attack (four years ago) and thought I had grown out of them like my oldest brother had!  It was great not to feel that sense of panic every time I felt 'funny.'  Then 8 weeks ago I was devastated to notice that familiar feeling creeping back.  I had an attack although it wasn't as severe as they used to be.  However, in the last 8 weeks, I have had four attacks!  Two have been relatively mild, two have been quite severe.  I can't identify any changes that may have triggered the relapse.

Does anyone know if this sudden surge in attacks should be a cause for concern or does it just 'go with the territory'? 

Thanks for reading! :)

I am not alone! I am not nuts! Thank all of you for sharing! Now I will describe what has been going on for me.

I have suffered what eventually was diagnosed as migraine headaches since I was a child. My parents called them sick headaches because I would throw-up near the end of the episode. Finally, sometime between 1963 and 1965, when I was 27-28 years old, an army physician using Cafergot as a diagnostic tool, diagnosed my headaches as migraines. Cafergot has worked to relieve the problem ever since.

In 1969, the visual aspects started with a blind spot in the central area of my vision. An ophthalmologist diagnosed this as my migraine symptoms changing, The aura continued to be present, though it would change slightly with each series of headaches. In between each series there could be months without any headaches. Later, the blind spot went away and visual field disturbances, blinking or vibrating lines around the peripheral area of each eye, were present. Pain could be avoided through relaxation techniques, Cafergot, and/or sleep. Only on one occasion did I ever wake up with a migraine--that scared me to death, because sleep had always been part of the sign of the end of the migraine. Over the years, as I learned to control the migraines when the aura first started, pain seldom was an issue.

Two unusual events have occurred recently. I am a 72 years old, twice divorced, now happily married, Caucasian male, with six children by my first marriage. The first change was on June 1, 2009. I had spent the day preparing for a dinner party at our house for 26 family members. The dinner went well. Most, if not all, of the guests were still present, when sitting on a couch in our family room, I attempted to raise my left hand. I could not raise my left hand. I tried to speak. I could not speak. I thought, "Jim you are probably having a TIA or a stroke." To confirm this I raised my right hand. Since that worked, I thought, "Well that confirms it. It is a TIA or a stroke." I did not feel any fear, just addressed it in my normal problem solving manner. I used my raised right hand to get the attention of a relative sitting on another couch across from me, motioning him to come over. He then sat beside me. I kept trying to speak and after a while, I could hear myself making what can best be described as drunken noises, too slurred for anyone to understand. I noted that my hearing seemed to be fine but my speech center was not functioning properly. I thought, "Try just using one syllable words." Then, when my son come over, I said, "Nine-----one-----one." I noted that these one syllable words seemed to me to be clear and I repeated them several times. Finally my son said, "You want an ambulance," went to another room and called 911. I could feel myself coming out of whatever had been going on. The paramedics arrived and did their diagnostic stuff. Someone asked how long I had been observed in this altered state. The response from someone else, was "about 15 minutes."

I insisted on being taken to St. Joseph's Hospital Emergency Room, which includes world-renowned Barrows Neurological Center, and where on a previous occasion, I had seen a Dr. Flaster, a stroke specialist. The ambulance crew did not like this, nor the fact that I did not want an IV, but at my insistence relented and took me to St. Joe's. Enroute, the slurred speech started again and the paramedic said something like, "I don't care whether you like it or not, I am starting the IV now," and she did so. When we arrived at St. Joe's Emergency Room we find that alas, Dr. Flaster was no longer at St. Joe's nor Barrows Neurological Center. The doctor that saw me kept me overnight, ran a bunch of tests, did an MRI, and diagnosed the problem as a "painless migraine." Note, there had been no recognized aura experience, with this event.

The second unusual event occurred, the day before yesterday. I was doing carpentry work on our back patio, and then the peripheral field visual disturbances, earlier described, started, without any aura. I made an unusual decision. I decided to keep on doing what I was doing. A short time later they went away, with no other symptoms. That, event termination without intervention, had never happened before.

What does all this mean? I do not know. Could it relate to the doctor and personal trainer supervised exercise program that I started three months ago? Could it relate to the fact that I took myself off all those medications that I had been on about three months ago? Does anyone out there have any ideas?

Generally about three weeks after I stopped all those medications, I started feeling much better, so I am thinking that that was a good decision, though, I cannot be totally sure. When I saw my primary care physician this week, she was upset that I had stopped the medications without consulting her. My thoughts had been “All the doctors that I had seen for the last two or so years kept remarking that I was taking a lot of medications.” My response had always been, “You doctors prescribed them all.”

I also frequently have fatigue problems after eating and occasionally am bothered by vertigo with nausea, without aura or migraine, and have to lie down.

Jim L. 

Even though my husband is still having a tough time,  it was such a turning point once we got ahold of a neurologist who specialized in hard to treat migraines.  Based on teh info you provided about Barrow Neurological Institute, the following are a couple docs there who seem to specialize in migraines.  also since you mentioned symptoms after eating,  try to google "migraine food triggers". you will get alot of answers you don't like,  but thru eliminating all possible triggers, then re incooperating one at a time, we have been able to narrow down many of my husbands triggers. for example,  cheese is a huge trigger for many, but doesnt seem to affect my husband.  nitrates (like in most preserved meats)  are a HUGE trigger for him. just some ideas.  i'm praying for all of you struggling with this condition and welcome prayers for my husband and i too.   good luck and hang in there!!

Schultz, Dale R., D.O.

Neurology

Practice Information Practice Name: Valley Neurology Associates Address: 19841 N 27th Ave #403 Phoenix, AZ 85027 Map Phone: 1-800-BARROW1 or 1-800-227-7691 Fax: 623-780-9150 Gender: Male Accepting New Patients: Yes Tobin, Joshua A., M.D. Neurology Practice Information Practice Name: 21st Century Neurology Address: 2601 N. 3rd Street #125 Phoenix, AZ 85004 Map Phone: 1-800-BARROW1 or 1-800-227-7691 Fax: 602 265-6586 Gender: Male Accepting New Patients: Yes

Oh I feel so relieved to find someone else who understands what i'm going through and doesn't think i'm mad!

I had my daughter at 16 and when she was 2 months old I had my first attack, I had a terrible headache but then the numbness started, I couldn't speak or swallow or walk properly. i was taken to A&E and was told i'd mad a mini stroke. It went with 24hrs but I was left weaker for a few months. I had suffered from migraines from 14 and didn't think it was linked. Then when I was pregnant with my son 3 years later I had another attack. I went numb all down my left side and I had them daily/ sometimes 2-3 times a day. I also had brain fog, got confussed and couldn't find the right words. I then started having seizures. I was admitted to hospital so many times it was awful. The thought i'd had a stroke then they thought i was making it all up for attention as i was a young mum, then they asked if my husband was abusing me!!

My neurologist then told me it was because I was fat and had kids young so if i lost weight i'd be fine - not helpful.

Eventually my GP said he thought i had hemiplegic migraines and refered me to a migraines specialist in kings college hospital london. He thought I had a PFO - a small hole in the heart and it has since been found that people who have this often suffer from bad migraines. I had a scan and a hole was found so I had to have an operation, but when they did it they couldn't find it!

The specialist recomended that I start a daily medication to control the symptoms, but I didn't want to as I had no faith in doctors, i still don't and was worried it would make it worse. He told me the tablets my first neurologist had given me was completely wrong and no wonder I had suffered, but stupidly I still said no! I was given a tablet to take the pain away when they started but as they had settled down after having my son, I thought I'd manage.

Then 2 years ago I had the worst attack I've ever had and it took about 3 months to recover. It left me with vertigo and off balance all the time. I was so weak down my left side i couln't do anything. I saw a dr who said I had damage in my brain that a nerve from the balance organ had been damaged and thats why it was worse. An MRI scan was done to rule out a stroke but my neurologist said sometimes haveing HM can cause damage - anyone else heard of this??

To cut a long story short, I now am off balance all day everyday which really limits what i can do. I can't drive anymore, and use anything i can lean on to get around the house. I have a really bad attack about once evry 3 months and some smaller ones in between. Stress, hormones, th weather, flashing lights seem to trigger them off and cheese so i do my best to avoid all of them.

The problem i have is both me and my husband wanted another child. I fell pregnant earlier this year but I my migraines came back worse than ever. I had no medication, and was fitting and going numb daily. I was suffering really bad vertigo where i couldn't get out of bed. In the end the I went to A&E where the dr advised me to terminate the prgnancy as I was at huge risk of having another stroke. So I took his advice and now feel it was the worst decision of my life.

I've since looked into it a lot and found out that what i had before wasn't a mini stroke it was just the HM starting up. My mum has them, not as bad, but they said it was genetic. So was I really at risk of having a stroke??? Are they linked? Also I have found out that dehydration can make them worse and I had bad morning sickess. Teh trouble was I was no longer under my neurologist so to see him through the NHS again was a 4-6 month waiting list and we could not afford to pay private, so I couldn't get advice from a specialist in time.

Is there anyone who has had a baby with HM? Is there a way we could have another child or is it too unsafe? I'm only 25 and hubby is 27 so it would be a shame to say never again. I am registered disabled because of the way it effects me and it made it impossible for me to do day to day things. I can no longer drive so I can't take the kids to school and even walking straight down the road is a chore without something to lean on as i'm still weak on one side and always dizzy.

I just feel like this is never going to end and i don't want the rest of my life being stuck in this house doing nothing. I want to live my life and enjoy it.

I'm going to see my GP in the new year to get referred back to the migraine specialist and i will agree to a daily medication. I've read that calcium blockers are good so i might talk to him about them.

I'm really sorry for the long post but any advice would be great. Thanks x

dizzykez, you really need to find a neurologist who is also a headache specialist if at all possible. i am on preventative meds that are helping so so much. it is very hard to hear that you are going through so much!!! i am so sorry to hear this. there are a lot more people with hm at http://www.healthcentral.com/ you should look under migraine. they even have a whole area just for hm. you need a lot more support. good luck to you . . .