Hemiplegic Migraines, any help or advice please.

[Riri91]

Hello, was wondering if I could seek out some advice from anyone please? I have just got out of hospital last night with having a hemiplegic migraine, I am epileptic and been a migraine sufferer for 4 years now but that was my first HM and I haven never experienced pain like that! My right side of my face had all dropped I could hardly open my right eye, am still sore now after it starting 2 days ago.. am so fed up right now av got so much shite going on health wise and this is just the cherry on the cake. I had a CT scan that was fine am getting an MRI done as an outpatient and I am ringing my neurologist up today as I get 5/6 migraines a month and can’t be getting these type of ones now. Does anyone know any medication that really helped? Like a good preventative? I can’t take any that lowers blood pressure as my blood pressure is naturally in its early 90s and it always makes me dizzy when I take it.. also what pain relief do yous take? Triptans don’t help they make my body flush warm n chest tight, and No pain killers work I was given iv paracetamol yesterday and oramorphe which I had a lil sleep off but was still in pain. Am only 28 and have a 6 year old daughter and meant to be going to uni in Sep and I really can’t cope anymore it’s one thing after another with me and these migraines I really can’t be dealing with am sick of being in pain and sick I wake up most mornings with a pit of worry and just trying to get through my days as I don’t know whether am going to have a migraine or something else and now it’s turned into these horrendous migraines. Any advice I would really appreciate. Thank you.

[Kelli0905]

Try baby aspirin daily. I don’t have hemiplegic but I have aura sensory and speech arrest migraines. That seemed to help me a lot!

[Riri91 in reply to Kelli0905]

Thank you for the reply! I can’t take aspirin/ibuprofen etc until as I may have an ulcer/gastritis from it so until that’s been ruled out can’t take any 😩 which is a shame as naproxen/codeine/paracetamol was the cocktail I would take in the past to help ease the migraine.

[Hidden]

Hi sorry to hear how distressed you are these type of migraines are very frightening especially the first time you experience one. I know when I had mine I didn’t even know it was a migraine as I had know throbbing head pain just weak and numb down one side of my body. I thought I was having a stroke or onset of MS. To tell you the truth it didn’t initially over concern me as I have auto immune conditions as well as menieres-disease and mild cerabal palsy which I thought might throw out these symptoms. I rung my GP to be cautious and described what had happened and he then suggested HM and not to be overly concerned unless the weakness continued for more than 12 hours.

I know that doesn’t really help you but reassure that it is just a type of migraine that is rare and I believe that people who have chronic migraine for many years often have.

Regarding Pain meds, I know you have epilepsy but some of the meds do help reduce migraine frequency. I can’t remember the name but worth enquiring with your GP.

I take Topiramate which is used to reduce frequency of migraine and this helps me.

I don’t know whether you are aware of the effects of the contraceptive pill With migraine but from experience a locum GP took me straight off the pill when she was aware of my migraine history and in fact it helped too.

I have taken low dose amitriptyline in the past too

There are still other routes than triptans and pain meds, pain meds can sometimes cause rebound (I personally don ‘t use them when I have a migraine as I find taking triptans help reduce the symptoms).

Don’t give up there is a solution out there it’s just a matter of digging deeper at least you are now going to see a Neurologist who will be able to give you up to date specialist advice on migraine. Think about what you want to say. What I tend to do now is type out a list of questions ‘agenda’ and then forward it to the secretary of the doctor I have the appointment with so they know what I want to talk about in order to prepare it also keeps me on topic and acts as a reminder if I become distressed or flustered. I’ve found they really appreciate the ‘agenda’ too as it gives them a guide of the structure if the appointment.

Good luck and hope things get better for you and your daughter. Here is to happier times x

[Riri91 in reply to Hidden]

Thank you so much for the very informative reply I really appreciate it! 😊 today is the first day since Monday where I have felt half number and the pain has subsided spot today i was literally in agony for 4 days on the run was the most painful horrific experience! And now am scared that my next migraine will be like that again ! I just really have had enough now I feel like am just getting through my days and not actually enjoying my life as my quality of life right now because of my health is crap! I feel so guilty on my little girl that am always sick lately and have to spend most days in bed/on the couch. I have an amazing partner her dad and family who support me which am truly grateful for! Am going to write a list of questions and things I want to ask and say for the appointment and am going to suggest if I could try Botox as I have tried triptans and tabs that are used for blood pressure in the past with now help. I haven’t tried amitryptiline (sp sorry) so I could try that. Am also totally changing my diet to low sugar and gluten/dairy free and gettin some b vitamin supplements. Thanks again and I hope your well x

[Val135]

I also suffer from hemiplegic migraines so can understand how you are feeling. The first attack is very scary, I thought I had a stroke and was relieved that it wasn't. It can take a few days to recover from this type of migraine. The best treatment I have is Botox injections every 3 months. They stop the paralysis, numbness & severe headaches. I also sleep on a 'chill' pillow which keeps my head cool .

Hope that helps and you feel better soon.

[Riri91 in reply to Val135]

Am so sorry to hear you suffer from these horrendous migraine too! Was the most painful and traumatic experience! I was worried I could of had a stroke/bleed. Today is the first day I’ve started to feel better since Monday am still sore and feel exhausted from it but I was literally in agony for 4 days! And now am so anxious and scared that my next migraine I get will be like that too. Am going to suggest at my app if I could try Botox as I have tried triptans and every pain killer possible (and naproxen which I would take with codeine and paracetamol I can’t take anymore until I have query ulcers ruled out) and I have tried that medication that’s originally used for blood pressure too with no joy so will suggest Botox, will even pay for it if that’s a reason why they don’t want me to get it. Could you tell me a bit about it like where do they inject and how does it feel afterwards and how li does it take to help? Thanks and am glad your getting relive now x

[Val135 in reply to Riri91]

I have a total of 31 small injections starting on my forehead, each temple, head & neck. I takes about 20 minutes. It’s bearable, not too painful, my doctor is lovely, she chats while she’s doing them so it’s over quickly . I go straight home, sit upright for 4 hours, no touching the injection sites & they must be kept dry for 24 hours. You feel a bit odd for a few hours . I usually feel fine the next day.

Hope that helps x

[Gypsi]

My daughter's HP seems to have responded well to botox too. Hers was a very severe case, incapacitating her for day with some manifestations of the disease lingering for months. It came as she turned forty one and followed on indeed from years of somewhat milder migraines which nevertheless forced her to take all kinds of strong painkillers. In her case, birth control pill also helps, contrary to my what my predecessor said. I think she also takes some equivalent of 75mg aspirin although it is a different blood thinner prescribed by her neurologist.

[Riri91 in reply to Gypsi]

Am definitely going to suggest Botox at my app, will even pay for it if that’s a reason why they wouldn’t want me to get it, how long did it take to kick in for your daughter? Am glad she’s getting relive now! I’ve stopped taking the pill since Monday just gonna have a month off it too see if that helps lessen the frequency but am doubtful as I was getting migraines while I was on no contraceptive as well. I can’t take aspirin/ibuprofen until they have ruled out query ulcers and it’s a shame because naproxen with codeine and paracetamol was what I used to take to lessen the pain. Thank you for the reply and I hope your well. X

[Hidden]

Hi Riri91. I take triptans but I cut the pill in 3, and take 1/3 of a pill. When I take the entire pill, my chest is very tight and I feel like I can't breathe. I take a painkiller with the triptan and that works for me, most of the time. Good luck to you, hope that you find something to help you with this awful pain.

[Riri91 in reply to Hidden]

I am scared to even try a triptan again after my experience. 😩 I still had a migraine but I was getting hot flushes and my chest was heavy and tight wasn’t very nice. Am glad it works for you though! I Really want something to prevent them so good to ask about Botox at my app. I really am so so fed up am exhausted mentally and physically and today is the first day since Monday av felt half ok still in pain and fatigue but u was in agony for 4 days and am so scared my next migraine will be like that again. Thanks again for the reply and I hope your well. X

[Riri91]

Thank you everyone for the replies! I am on day 4 and still have pain and also still feeling crap in myself, dizzy, exhausted, no energy, Brain fog, literally walking to the toilet is an effort is that normal still after 4 days? I really am just beyond done with this I cant cope with the severe migraines I already get and now these? I can’t take any type of like ibuprofen, aspirin etc as I have possibly caused ulcers/gastritis through them. I’ve been in pain the past few months in my Breast bone, chest and back and it’s been worse at night time so currently going through tests for that. It’s like I am always sick or in pain with something like my body is always attacking itself. Am 28 I don’t drink or smoke am going to go on a gluten and dairy free diet to see if that helps.. am hoping my neurologist can speak with a headache specialist too at the Walton centre am under and find some sort of preventative I can take, the Botox sounds quite helpful so will hopefully discuss that with the neurologist. Thanks again.

[Kathybishop]

With your low blood pressure drink 2.5 litres water a day ( use an ap) and add salt in the morning 1/8 th teaspoon in a glass of water. Add more salt during the day if you feel vulnerable to a migraine. I’ve recently learnt that a lot of us migraineurs have low BP and our electrolytes are out of sync. Do your migraines happen at the same time as your periods? If so look at stabilising your hormones with possibly the merena a coil? I have started a low fat plant based diet which has lowered my pain levels. Also get some lavender essential oil and put on your top lip to breathe in relaxing aroma. Try an ice cap . Read Michael Greger - a genius and Wim Hoff for ice therapy! It’s brutal and you are so young. Also when I’m really bad I take a triptan with omeprazole and 30 minutes later a Naproxen. Not nice drugs but that combination works for me. Otherwise coffee aspirin etc good luck

[Riri91 in reply to Kathybishop]

Thank you for the reply! Today has been the first day since Monday Where I’ve not been in pain or had to stay in bed as am so dizzy and exhausted it’s literally took a week for that migraine to subside. Thank you for the advice, I use an Ice pack on the back of my neck and head when I feel one coming on and I used to use naproxen but I can’t anymore as I may have an ulcer/gastritis from them 😩 they did help with the severity too.. Yes my bloop pressure did always low so will try and get a salt water down me without throwing up.😭🤣 I really do want a preventative to cut down the amount am getting and I pray that my migraines aren't all going to be like that hemiplegic one I had I really could not cope with that and having to suffer for a full week with it! I will look up Micheal Gregor like you said thank you.. And to be honest my migraines happen all the time but yes can be bad around my periods but I’ve been taking the mini pill and the doctor at the hospital suggested I take a break to see if it helps/makes no difference etc so am having a lil break for a month to see.

[Michdenise]

I too suffer with hemiplegic migraines and they are very scary so I feel your pain! I currently have one a week which is much better than when they first started about 2 years ago. I have tried other tablets but I now take 500 mg of Pregabalin a day but the side effects are pretty awful. I will try to stay on this medication for a while to see if things improve. Although doctor says this my be what I have to live with??? I might ask about Botox?

I have suffered with migraines since I was about 8 years old. They change for time to time. I even once had stomach migraine for about 6 months!!!

But the HM is worse because no one really seems to know much about it.

I hope you get the treatment you need to deal with this x

[Lehuquetif]

I feel for you... my 1st and only migraine was 10 months ago (not counting !) And a hemiplegic one. The fright of my life and possibly still under shock ! Nothing prepares you for it. Now careful with my food, cholesterol under control. Never even knew this stuff could happen! Take care of yourself.