Hi there, It has been sometime since I have been on this forum but I saw you post today and just had to respond to you. I am sorry to hear that you have been diagnosed with hemiplegic migraine. I too...
Hi Sweden, No I am not up to 400mg on the Lactimal yet. I am on 200mg at the moment and will remain there for a while. I am experiencing side-effects, which include insomnia, low mood, muscle and...
I had a lumbar puncture (spinal tap) last year and afterwards the headache I had was horrendous and I had to spend six days in bed and I was given two caffeine infusions. Eventually it did settle....
Sorry for being away for so long guys and gals. Summer77 I have experienced hearing problems whilst having a HM attack, to the extent that I went deaf and felt like I had my head in a goldfish bowl,...
Hi Boriquamama, On my medi-tag watch I have my name, my medical illnesses (Hemiplegic Migraine and Asthma) and my home phone number and my doctor's phone number on the back of it. However in the UK...
Hi Boriquamama, I wear a medi-tag watch just in case I am out and about and experience an attack. With regards to the repeat MRI's I have never heard of this before, because migraine doesn't show up...
Hi everyone, I was just wondering if any of you experience what I call painful hemiplegia? The best way I can describe it is by saying it feels like I have a tourniquet tied around the top of my arm...
Hi Sweden, I am so sorry that I haven't been posting but I have been having a rough time. How have things been for you? In answer to your question I have not yet had an ONSI, when I was last in...
Hi, I was diagnosed at the age of 7 with Sporadic Hemiplegic Migraine. I have listed the symptoms below: - Episodes of prolonged aura (up to several days or weeks) - Hemiplegia (paralysis on one side...
I was first given caffeine infusions to see if that made any difference. The first time I had one my pain was scoring a 9/10 when the infusion started but after the four infusion my pain dropped to a...
I have had an indium scan with pressure measurements to see if I had a CSF leak but I was told that that wasn't the case and meaning everything else has been ruled out then I was given the diagnosis...
Hi, I have TMJ (a clicky jaw and bad bite) and thought that this may be the cause of my migraines too. My GP sent me to a specialist who didn't agree with this being the cause of migraines. He gave...
Hi, I am prescribed triptans for my chronic daily migraines. My Headache Specialist is adamant that I stick to these rules. a) You don't use them when you've got aura (this relates to my hemiplegic...
Hi Sweden, I have a similar experience to you with regards to being very confused and can see people talking to me but do not understand what they are saying. I can remember when in my teens and I...
Thanks Ben. I am desperate to return to studying all the aspects of biomedical science (this is what my degree is in),e.g. biochemistry, immunology, human physiology, medical microbiology etc. I am...
Hi Ben, Like you I too feel that I have learned something from this experience and in the long run will hopefully make me a better person. It certainly isn't easy living day in day out in pain but...
Hi everyone, Sorry for not being around for a while. Sweden, in answer to your question about whether I know an HM attack is coming, well for me I normally wake with an aura. It is hard to explain...
I have just reached the 11th anniversary of my chronic daily migraines as well as suffering from hemiplegic migraines since the age of 7. I have an excellent relationship with my headache specialist...
Hi Yvonne you're welcome. My 'normal' hemiplegic migraines last up to 12 days. I start with a slow gradual improvement but then I plateau for a few days before continuing to recover. It is an...
Hi Yvonne, I too have Sporadic Hemiplegic Migraine. I am sorry to hear that you have been having such a rough time. When I suffer an attack it is my left side that is affected too. I am surprised...
Hi Sweden, I live in England. I have Sporadic Hemiplegic Migraine as I neither my parents suffer from this condition and nor do my siblings. I was diagnosed at the age of seven. Hi everyone, Sweden,...
I have had numerous MRI scans and other investigations all in order to help with my diagnosis. However, I have not an echo of my heart to rule out a PFO. I have never been allowed birth control pills...
Hi, I am a sufferer of hemiplegic migraines and experience all the symptoms that you have mentioned. I have tried all the meds but thankfully I am now seeing a headache specialist in London and he...
I would recommend a neurologist who is a Headache Specialist. I have seen several neurologists for my migraines but it is only now that I am seeing a Headache Specialist, after suffering for 25...
Hi, I have suffered from hemiplegic migraines since the age of seven, I am now 32. I used to have an attack every four to six weeks lasting 2 days. With age my attacks have become more severe each...
Hi again, As with most preventatives for migraine it is best to give it at least three months before expecting to see results. How ever when I was taking Topamax i was writing my dissertation for my...
Hi Desviante, I am sorry to hear that you have been having a rough time of late. I have also tried Topamax for my migraines but due to the side-effects i experienced after three months I had to stop...
Hi Darren, I am sorry to hear that your partner has recently been diagnosed with hemiplegic migraines. I too suffer from hemiplegic migraines and have done since I was seven, I am now 31. The...
Hi Ann, I hope everything goes well for you next week. And I'll see you there on Thursday /community/emoticons/tongue.gif as I am in for the day for my fourth caffeine infusion. I am just hoping it...
Hi, I also suffer from hemiplegic migraines and was first diagnosed at the age of seven, I am now 31. I have tried virtually all preventative medications to try and control my attacks but with little...
Hi Korbnep, Thank you for your support. I do at least have some hope of finding an answer to my continuing suffering. Whether he finds a leak or not, I am just pleased that he is willing to...
Hi everyone, Just as a follow up to my last caffeine infusion, my CDHs remained relatively low in severity for about 10 days, with two migraines in the middle. I have today received information from...
Hi everyone, Just to up-date, I had my third caffeine infusion on Monday. Whilst I was having it done my CDH reached a 7 on my pain scale but by late evening, when I returned home it reduced to a 2....
Hi teacher1976, I think I experience a similar sensation to what you have experienced. The way I would describe it is as if someone is squeezing part of my brain with a slight tingling sensation...
Hi Korbnep, At the end of the day I believe that my doctor is working in my best interests and although the benefits have been short-lived in the pasts, I have at least seen a benefit in having a...
Hi Korbnep, I was admitted for three days in order for my doctor to try and determine whether my CDHs are a consequence of CSF pressure dysregulation or have a migraine biology. I had an MRI scan...
Sorry everyone that I ended up posting twice...I don't know what happened there!!! Kala...
Hi everyone, I suffer from chronic daily headaches, hemiplegic migraines and migraines with and without aura. I see a headache specialist in London and I am going next week for a caffeine infusion,...
Hi Vstitch, I have tried Topamax but after several months I couldn't cope with the side-effects....I became totally paranoid which was awful. In the end I didn't even trust myself to drive, as I...
Hi everyone, I just thought that I would bring you all up-to-date with my situation. I saw my consultant a few weeks ago and we discussed my MRI scan results. He has decided that I need another scan...
Hi again, I am currently struggling with my job and have been referred to Occupational Health, I should have an appointment next week sometime. Although at the moment my manager is being very...
Hi, I also suffer from Hemiplegic Migraines and have done now since I was 7, I am now 31. I experience an attack every 6 to 8 weeks and at their worst will last for 12 days. I am currently taking...
Hi again, I spoke with one of my consultant neurologists' registrar yesterday and we have decided to reduce my daily dose of Flunarizine from 10mg daily back to 7.5mg. Hopefully over a period of...
Hi everyone, I am desperate to hear from anyone who has taken Flunarizine as a preventative medication for their migraines and experienced side-effects. I have been taking Flunarizine since July...
Hi everyone, I have received a letter from my specialist in London which has provided me with some information regarding my MRI scan results and what he has planned next. He wrote: 'You had an MRI...
Hi, I can totally empathise with you. I have suffered from migraines for 23years, from the age of 7. I went through a period of about 3 years where I was stuck in a state of daily hemiplegic...
Hi Brad, Thanks for your advice and I have certainly stopped researching. I will just wait for my appointment with the specialist and see what he has to say on the situation. I hope you condition is...
Hi Ann, Thank you for your message. And you are very right, things hardly ever turn out as bad as we think they will. This is the problem with being supplied with information we don't understand, as...
Hi Ann, Thank you for your support. I will let you know as soon as I have the date of my next appointment. I have been doing some research and have frightened myself a bit!! Dysplasia (from 'bad...
Hi everyone, I am being seen by a headache specialist in London, UK as I suffer from hemiplegic migraines, CDH and other migraines, and was recently admitted into hospital for some investigative...