Hemiplegic Migraines

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Tstout
New Member


Date Joined Jan 2011
Total Posts : 1
   Posted 1/15/2011 6:44 PM (GMT -6)   
4 months ago I delivered my first child, but while about 5 months pregnant I begin to have problems with the left side of my body going numb, going blind at times, and loss of cordination. I talked with my OB and while he couldn't determine why I was having these problems he sent me to a neurologist to see if he could determine why I was having these problems. He sent me for a MRI and everything came back fine and ran a few test on my in his office but nothing to indepth. He determined that I had hemiplegic migraines but since I was pregnant there was nothing that he could really do for me. I went on somewhat of bedrest because during one of the episodes my leg had gone numb and fell. He said that there was a chance they would go away after delivery since I didn't develop them till being pregnant. They did go away after I delivered thankfully. But then when my daughter turned 3 months they came back with a vengance. At first they were just lasting a few mins while I was pregnant. Now they are coming on stron and lasting for several hours. My left arm and leg goes numb, my head feels like its going to explode at times and sometimes its a dulling pain in the back of my head at the top of my neck. The blindness is not as bad as it was though and I have never expereinced the speach problem. Does this sound like they could be hemiplegic migraines or maybe they diagnosed to quickly without enough test. I wasn't put on any medication because I wanted to nurse my child. But I now may have to be put on something. Because during an episode I am unable to hold her and I am a stay at home mom and I can't afford to not be able to hold my child for several hrs at a time. Thank you for any helpful answers that I can recieve.

HemiL
Regular Member


Date Joined Jun 2010
Total Posts : 33
   Posted 1/17/2011 1:30 PM (GMT -6)   
HI Tstout,

Congratulations on your new baby. That is a wonderful blessing. I have had Hemiplegic migraines for about 3 going on 4 years . I experience visual disturbances, slurred speech, numbness, burning sensations, paralysis or weakness on the right side of my body as well as a other symptoms. In my opinion. If you are not satisfied with the range of tests that were performed on you and if you are skeptical about the diagnosis of Hemiplegic migraine, please seek a second opinion. I saw at least 4-5 doctors before I received a definitive diagnosis.

The person who I received my diagnosis from was a specialist who has dealt with hemiplegic migraine patients previously. I am not sure if the person you saw has seen this illness before, if not , hopefully you can find someone who has experience with this type or similar types of disorder/diseases. They can then assess you and help you make the best choices regarding medication or other types of therapies (ie.e oxygen) suitable to your situation and lifestyle. I take medication for my Hemiplegic migraine. I really hope your situation improves or you and your health care provider can find a solution that enables you to find relief without the use of medication, so you can continue to nurse your baby girl.


Congratulations again,

HemiL

hemiplegic migraine mum
New Member


Date Joined Jun 2011
Total Posts : 1
   Posted 6/16/2011 3:23 PM (GMT -6)   
I realise is has been a couple of months since the above post and I hope all is well with you and your baby girl, I thought I would just add something in case someone out there at some stage stumbles upon this in the future looking for additional information.
This is what I went through and not a recommendation for anyone else’s life.

I suffered from hemiplegic migraines brought on by pregnancy. I never suffered from migraines ever before. I suffered from pcos and endometriosis for years and was on hormone treatment for years. I truly believe that the migraines are connected to hormone levels in the body. For lack of a better term I tend to refer to them as seizures as an umbrella term for a group of symptoms that I suffer from at different degrees and for different lengths of time according to severity

The symptoms that I suffered from were:
headache - much like a dehydration headache in a localised area
pain like a needle through the left eye
creeping pins and needles or sand around the left side of mouth, recognised by the feeling of numbness and swelling in lips
left eyebrow feeling heavy
numbness growing from lips to cheek
drowsiness
creeping tingling of finger and toes
slowing of motor responses in left side
severe weakness in left side
complete paralysis
confusion and tiredness
There is a period in which there was loss of consciousness but also a period in which I could hear but not respond due to paralysis.

Each seizure lasts between 15 minutes to an hour and can take time to recover from depending how severe they are or how many you have together, as they tended to cluster with me. Sometimes having 10 in one day.

The first seizure I suffered from took me 2 weeks to recover from and had the same effects as a stroke. I could not use my left side, at all. I could not walk. I was completely paralysed down my left side.

I was put into the high risk section maternity clinic as i was also suffering from pre-eclampsia.
I was put on bed rest by 6 1/2 months due to the increased hazard of falling down while pregnant.
The general view was as there was no risk to the baby other than falling I just to weather it.
Unfortunately that plus water retention and blood pressure meant I put on 4 stone in 2 months before my son was born.
I ended up being induced at 38 weeks and baby boy was healthy and beautiful.
By the end I had up to 10 seizures a day and was unable to move.
I still suffered from them to a small degree post pregnancy but they say it takes up to a year to recover from pregnancy and birth.

Things I wish I had known from someone else -
I had an MRI and CAT at 17 weeks in A&E they covered my stomach with 2 lead covers it was fine and was reassuring to know I had not had a stroke.
The medication offered would have caused a miscarriage so I did not take it.
Stay relaxed and don’t panic. They didn’t hurt me. They were an inconvenience and affected my income but they did not hurt me or my baby.
Ask your family and friends for help even if it’s just to be in the house just in case you fall.
Keep a diary of your seizures. grade them by severity describe them and write down duration and recovery time, this will help to show you doctor as you can get confusion and memory loss after them, which makes it harder to describe.
You may not always see the same the doctor so always tell them all about it.
If you are unconscious for longer than 20 minutes it’s time to call an ambulance.
I also carried a laminated note around my neck stating.
"Name: Age: contact details and doctor name: I suffer from hemiplegic migraines and am pregnant. If I appear asleep and do not respond I am having a seizure. Please do not move me or ask me questions. I cannot respond. If I have not come round with 20 minutes please call and ambulance."

My son is now 9 months old, I suffered from mild seizures up until he was 6 months. I am now 2 months pregnant and they are now back. I will be calling my friends and family for support, and as long as I have that I know we will all be fine.

It is terrifying not knowing what is happening but it is something that you can get through with a little help and not doing anything silly like going for a long walk on a deserted mountain top at 8 months pregnant.
I hope this helped.

nannyj
New Member


Date Joined Jul 2011
Total Posts : 1
   Posted 7/1/2011 3:53 PM (GMT -6)   
Hi I started with an irritating right eye and I went to the eye infirmary who said that there was nothing wrong. The irritation became worse and I felt like there was a massive pressure, I also noted that my eye drooped considerably lower and after about two weeks I also began to experience pain as well as auras loss of vision and a massive headache afterwards. As if that wasn't bad enough I began to feel generally unwell and I experienced lack of co-ordination, muscle weakness, pins and needles and I couldn't speak or understand what was being said to me. It is always on my right side and each attack has varying symptoms and has also included light sensitivity where my eyes just streamed, noises seemed louder and made me jump and I have numbness in my face and arm and leg or pins and needles. I get so confused and my words become muddles or if my husband spoke to me I just didn't have a clue what he was saying I went to the doctors and after seeing the state I was in he sent me to the ER fearing I had a stroke but the scans I had were clear. I was told it was a migraine and sent home with paracetamol, followed by Triptans and Pizotifen after my doctor thought I had hemiplegic migraine. The Triptans only lasted about 2 hours and the Pizotifen haven't done anything. After about a week the same thing happened followed by a few days relief and the same thing but worse each time and lasting longer. I collapsed, have fallen and cut my eye. I couldn't do my job and my colleagues reported me as being weird and my pupils as being a drunk and I was sent home sick and have now been off for three months. I was back and forth to the doctors and I have just had an appointment with a neuro consultant and have confirmation that I have Hemiplegic Migraines. They think it is because I am peri-menopausal as my periods are all over the place so I am having a coil fitted to see if that helps Also on Monday I am having some sort of Blockers injected into my neck and head to see if they help, I am also being prescribed Lyrica followed by Flunarizine if they don't work. I am just hoping that these sort me out as I willl lose my job at this rate and having these attacks every 5 or so days and lasting about the same is horrendous so I feel for anyone who has these debilitating migraines. My consultant is bombarding me with lots of different treatments as I don't have a life at the moment. i have only been out twice and have had to return home and on both occasions thankfully I had someone with me. If this treatment doesn't work I don't know what I will do. Has anyone else had these Occipital Blocking Injections and do they work? Wish me luck for Monday as I hate needles, but needs must. tongue

lil psi
New Member


Date Joined Jul 2011
Total Posts : 1
   Posted 7/9/2011 8:37 PM (GMT -6)   
How did you get on with those injections nannyj?

Im making a trip to the doctors on monday for more suggestions and ideas on medication.
I was diagnosed with Hemiplegic migraines about 7 years ago and have been suffering on and off since. Ive tried a few pills such as paramax (which I had a reaction too) and Pizotifen, mixed with many pain killers. I was on the strongest co-codomol for 2 years.....

The reason there was that I was driving one day and my left leg started to get weak, so I zoomed home by which time I had a migrane with photo sensitivity, nausia and general confusion and lack of awareness. I lay down and my left arm and leg went completly numb. My arm was like this for around a week, my leg for 2 years. When I say numb what I mean is total paralasis, I could not use or feel these limbs at all...if someone had stabbed them with a sharp object I would not have perceived it at all.

Now it took a while through various scans (MRI,CT) and several specialists to decide there was nothing more they could do but perscribe the medication and hope the paralasis passed.

That was the worst time of my life..generally my episodes are alot less servere and shorter. Tuesday just gone was tje beggining of my last migrane (which I still can't shake) and weakness in my left arm and leg...my arm is fine but my leg is still not 100%

I was wondering if anyone else had these lasting problems for days/weeks afer? Also reading some of your posts has helped me realise that I do not have ADD but my lack of attention to conversations and general lethargic feeling is probably due to this condition.
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