hemiplegic migraine

I do sometimes get full paralysis I've been waiting nearly 7 years for a diagnosis only this week have u had a doctor agree what this is and when your told it's anxiety and sent in your merry way it's so frustrating xx

HM is so annoying and stress is a major contributer to it. I have

that Botox for me has helped a great deal, so too has counselling

for my stress causes. If you can and you live in UK get your GP to

refer you to the countrys headache specialist at the National

Neuro hospital Queens square London. His name is Dr Matharu.

The team are wonderful and they give you contact numbers and

email address for them so you can let them know if treatement isnt

working.Oh and also Flunarizine has been good too!

Best of luck

I have since been to the neuroligist and he has put me on topirmate.....

It's day one and all it's done is make me feel like I've had a bad attack all day it's nearly time for my next one and I have a headache.....I am supposed to be taking my children out tomorrow...I don't need to drive but it is so embarrassing when you aren't able to do things as a result of hm but as a result of the meds that are supposed to help you is even more flustrating

The Neuro was looking at me gone out when I said my weakness can stay for weeks....I explained I get the fuction back after a few hours too a couple of days but it still feels weak so then he said well oh no it can't be in hm. ....why's that? Anyone know? Seems they are just plucking at straws xx

I can only sympathise with you because it really is for me and I know many others have said the same, the drug is aweful and I am surprised he offered it to you.

If you can get back there asap and demand something else, like Flunarizine, Botox or even Nortriptylene, these are way better.

Dont give up Claire, hang in there and things will get better I am sure!

The truth is they do pluck at straws as their is so much they dont understand about the brain and what one person responds to, another one doesnt, they dont know why that is either. Also there are varients to HM too, they dont always tell you that Claire.

Drs have to be nagged a lot sometimes.

I was told that what is happening when HM strikes is the brain some how forgets how to communcate with one side of the body and it has to be taught again.

Do you have a lot of stress in your life Claire?  This is a contributor to HM and since I reduced mine I have been a lot better.

Best of luck and I hope you get some relief sonn,

Always here to listen and respond Claire, and if I have any advice to pass on I will do

Good luck with taking the children out too, hope you have a good day,

Hope you are well and take care

Hello there

?I have no idea if you can help but I am at my wits end. My 30 year old daughter suffers terribly with HM and has had as many as 3 strokes in a day. We paid for her to see a specialist in Halifax who prescribed Topiromate . She now takes 100mg 3 times a day but is still very unwell. Doctors and migraine clinic don't have a clue. I notice you recommend getting in touch with the Nat Neuro Hospital. Do you think that will be the best way forward? I am worried about the medication she takes and they say its very dangerous to come off it. She is even contemplating having a hysterectomy as she believes its hormone related. Her anxiety levels are really bad and I think that's down to the medication too.

?If you have any advice at all I would be most grateful.

?Many many thanks

Hello Karen,

I am sorry ti hear that your daughter is so unwell.

I would recommend seeing Dr Matharu privately, so you get in quickly and if you want I can private message you with his secretary's phone number.

I have been having Botox which has been a revelation for me and I have also been taking Flunarizine which has also helped.

I am sure Dr Matharu can help your daughter.

Karen, if you want the phone number just get back to me.

I wish your daughter all the very best and I hope she finds something that helps soon.

Best wishes and take care

Hello there.

Many many thanks for your quick reply. I have already sent an email to him via his secretary and I am sure his contact number is also there.

If I don't get a reply to the email I will try and call . Any problems I will of course come to you.

How long have you been taking the Flunarizine and what side effects if any as the Topiramate is terrible. Do you also get BOTOX via NHS or is it payable privately.?

Once again Thank you so much. I cannot bare to see her struggle any more.

Its my  pleasure to be of any help I can!

Yes, I get Botox and Flunarizine on the NHS.

Dr Matharu and his team are very good.  Once you have been they will give you a phone number and email, so if you have any problems after seeing them, you can easily contact them again.

Yes, I would phone ASAP and you should get a private appointment very soon!

If I can be of any more help, do please come back to me.  I hope your daughter soon gets a management plan so she can lead some sort of life!

Very best wishes and take care.

Good luck and let us know how you get on please.

I just wondered how your daughter is getting on?

Did you see or are you seeing Dr Matharu?

Be great to hear from you.

Hi there.

Many thanks for asking. I did leave a message for you but don't know why you havnt received it. we go to see Dr Matharu Feb 6th. At the moment she has not had any recent strokes but it's the medication side effects that are very worrying. let's hope we get matters sorted next week . will be in touch.

Kind regards

Karen

Good luck on 6th feb with Dr Matharu, him and his team are very good.

Glad her symptoms are a little better at the moment.

Yes, please let us know how you get on.

Best wisthes and take care

How did you get on with your daughter when seeing dr Matharu?  Has he put an action plan together?

Following our meeting with Dr Matharu our daughter has now been weaning herself off the topuramate so that she can then start the Flunarizine. Incredibly she has now become symptom free and is back to her normal self. Go back in 3 months. Cannot thank you enough you changed our lives. xxxxx

I am REALLY glad your daughter is so much better now and its a real pleasure to have pointed you towards Dr Matharu!  I hope she has seen the back of her ill health and enjoys her life.

My very best wishes.  Take care

Did Dr Matharu offer Botox at all?  This has been a godsend to me.

Please keep in touch, I am keen to know how your daughter gets on and if you come across any new treatments too.

My very best wishes to you and your daughter and I hope she has a wonderful life now.

Take care

Hi There. Sorry it's been so long. Hope you are doing well. My daughter made the decision to be drug free and go down the path of diet change. No dairy or gluten or caffeine. She has been marvelous. She does have attacks but not as frequent. She can at least have a normal as possible life without drugs that make her feel like she is not in control. The attacks she does have cause paralysis on both sides with inability to open her mouth and also her throat feels like it is closing. She still takes medication to bring her out of an attack but feels that she has made the right choice . Why triptans are still being given to patients I don't know as they are dangerous. Still there is not enough help out there and GPs are of little or no use. I hope and pray something is found to help sufferers soon.

Hi Karen,

I am glad your daughter is doing much better. Triptans will make this condition worse, so your daughter should not have had them in the first place.

I had the full body paralysis once and it was pretty scary to say the least and so it must be terrifying for your daughter bless her, I generally get just my left side paralysed.

I am interested to know Karen, what medicine she takes to bring her out of an attack as they said there wasnt anything I just had to have physio

Hi there. I am unsure of the correct name so will ask my daughter tomorrow. The other news is she has just found out she is pregnant so we are hoping this might cure her condition as it started after the birth of her first child. At the moment she feels good and has just had 1 attack in 2 weeks. Will let you know the name of the medication.

Regards Karen

Oh, congratulations on the finding out you will be a Grandmother again 😃

I will look forward to hearing from you about the name of the medicine she is taking.

Hi there. Thankyou for your good wishes. The tablets she takes during or just before an attack kicks in are sumatryptan. She says that they are actually just very strong pain killers but they do help. She has chosen not to take them whilst she is pregnant though as she feels that there just is not enough research into the effects. When the attacks do happen she gets very little warning and if her jaws seize up her husband finds it very difficult to administer them to her. It is a very frightening thing to see but still the medical proffsession seem to be reluctant to recognise and investigate this terrible illness. Dr Matharu did recommend flunazine but our daughter preferred to try things the natural way. Let's hope the pregnancy improves things. Sending our sincere best wishes to you. Karen

Hello, I have been trying to find Dr Matharu, and even put a message on his website but have not had a response. I get hemi migraines and have come off all meds, am 3 weeks free of meds so in withdrawal at the moment, and my hemi migraines appear to have stopped. I live in London. Could someone message me with details on how to get hold of him please?

Thank you so much.

Hi Karen, thats interesting as Dr Matharu told me not to take Sumatriptan for HM as it would make it worse. Flunarizine is a good preventative for HM and worth considering. Its better than taking Sumatriptan as sumatriptan is just as unnatural as Flunarizine.

Botox injections are also good and probably better while she pregnant. Good luck to her Karen and hoping that all goes well. Best wishes

Hi Personal, thank you so much for the telephone number. I agree with you that triptans make the HM worse, they did for me.

Hi there. Well when we went to see Dr Matharu our Daughter was taking a daily drug prescribed by a consultant. Not sure of the name but he advised her to wean off those over the course of 3 weeks. He said she should never have been given them as they could have actually caused a stroke or heart attack. He said it was ok to continue with the ones she used to bring her out of an attack and never suggested that she stop taking them . Maybe the continued use has in fact made the attacks worse!!! Anyway at the moment thank the Lord she is symptom free and she is not taking anything so we will see how things go. I will speak with her and tell her what you have said. Many thanks for all your help. I sincerely hope and pray you will soon be rid of this terrible illness.

Hi there. Also forgot to say that Dr Matharu said that BOTOX would be of no help as she did not have head pain just stroke symptoms with aura which came on without warning or just tingling in the face.

The drug our daughter was taking prior to seeing g Dr Matharu was Topiramate. Very dangerous if taken ling term and she was on maximum dose.

Hi Paula. The number to call is 07595900535 It is Mara Balcombe who is one of the secretaries. If she is it able to take your call just leave a message and she will get back to you the same day.

Hi Karen,

Yes I tried Topiramate but it was aweful.

Thats odd that Dr Matharu said she couldnt have Botox as she had no pain. I had no pain, but it was amazing for me. I get virtually paralysed down my left side, but no pain. I do get eye pain as I begin to get better, but I take high dose Aspirin for this. 900 mg. Cant take much at that dose though and I need stomach protection too.

Glad you daughter is a lot better now, long may that continue

Hi Karen, thank you so much for the information. Which medication did Dr Matharu say was dangerous? i have also taken myself off all my medication, has taken me over a year and have been medication free for nearly four weeks, apart from withdrawal my numbness and hemi migraines have disappeared. I am convinced it was the meds that caused them, as never had them before I was put on meds for something else.

its good to hear your daughter is doing well.

Hi Paula

The medication my daughter was taking was Topiramte which was given to her by another specialist we paid to see. Dr Matharu said she was on the highest dose and that taken long term could cause a stroke,

She has been much better since weaning off it and changing her diet but when she does have an attack the numbness is down both sides and affects her throat and breathing. Since finding out she is pregnant she has been much better . I am sure its hormone related as this whole thing started after the birth of her first child. Hope you manage to control this terrible illness.

Hi Karen, mine started around menopause, so its interesting what you say about hormones.