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Author Topic: I have a new diagnosis  (Read 3888 times)

suzygirl

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I have a new diagnosis
« on: Mar 27 2014, 11:05 AM »
It feels like I am collecting them!  ;)  After my balance clinic appt, I was referred on to various places, a lot of which I am still waiting for.  However one of those, was the migraine clinic.  I saw a clinical nurse specialist who was really lovely which made me feel relaxed, she actually suffered from migraines herself, so knew how awful they were.  Anway, we went through all my symptoms and then she examined me and then she threw in a few questions which surprised me.  It turns out I actually have Migraine with Hemiplegic aura or Hemiplegic Migraine as it is commonly known.  Here is a link to more info if you are interested.

http://www.nhs.uk/ipgmedia/national/migraine%20action/assets/hemiplegicmigraine.pdf

http://www.migrainetrust.org/factsheet-hemiplegic-migraine-10913

 am still waiting for a follow up with my ENT to see if this covers all my symptoms or if I still have some MD symptoms.  I am  expecting to be discharged though, the HM diagnosis seems a good fit at the moment.  I have to keep a diary for the clinic and that had made me see, just how many of the symptoms are connected to the migraines and just how many migraines I am having.  You don't always have a migraine with them, sometimes just the aura.  The last severe attack mean't I lost my speech for over 24 hours and it took over a week to come back fully and I was admitted to hospital to rule out a stroke.  Not a very pleasant experience.  I have been advised to get a medic alert bracelet in case it happens again, which I have ordered.

Now, I always said if I found out I didn't have MD but 'just' a migraine I would dance for joy.  Can I be forgiven (Wobbler?)  for not doing this on this particular type of migraine?  I am having 6 attacks a month at present and it is playing havoc with my life.  I am on meds to prevent it, just got to wait 3 months to see if they work.

Anyway, that is my situation at present, and it may change.  Thanks for reading.

Deb


Offline Nuttyneddy

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Re: I have a new diagnosis
« Reply #1 on: Mar 27 2014, 03:46 PM »
I hope the new meds work for you.

As far as changing diagnoses are concerned, the good thing is that it might lead to better treatment for you.  It doesn't make any difference to the symptoms you are suffering, whatever name they are called.

I hope this is the beginning of some relief  :)

suzygirl

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Re: I have a new diagnosis
« Reply #2 on: Mar 27 2014, 03:59 PM »
Thanks Nutty.  I am really hoping that they work for me too  :)

I had forgotten that links had been disabled as we were getting some very nasty spam. So here is a copy of the info that can be found on the migraine trust website link info on hemiplegic migraine.

Quote
Hemiplegic migraine is referred to as a “migraine variant”. The word hemiplegic simply means paralysis on one side of the body. A person with hemiplegic migraine will experience a temporary weakness on one side of their body as part of their migraine attack. This can involve the face, arm or leg and be accompanied by numbness, or pins and needles. The person may experience speech difficulties, vision problems or confusion. This can be a frightening experience for the individual as these symptoms are similar to those of a stroke. This weakness may last from one hour to several days, but usually it goes within 24 hours. The head pain associated with migraine typically follows the weakness, but the headache may precede it or be absent.

Hope this helps people understand what I am experiencing, and maybe why I am not dancing for joy.  The confusion especially is driving my poor hubby mad.

Online Ashley

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Re: I have a new diagnosis
« Reply #3 on: Mar 27 2014, 04:20 PM »
Hi Deb
My brain is like pea soup at the moment but I wanted to acknowledge your post and join Nutty in wishing you well on the new meds. Definitely not a diagnosis to "jump for joy" over, that's for sure  :(! Horrible, disabling symptoms.
Take good care
Ashley

Offline jojo

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Re: I have a new diagnosis
« Reply #4 on: Mar 28 2014, 12:26 AM »
Hi Deb

Have not been on here much lately due to having a further 10 injections in my back!!!!  Ouch!!!

Just to say I wish you well on your new meds and hope that they work for you!

Keep us posted on how you are getting on.  Good luck with your other appointments!!

Take care Jojo x

suzygirl

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Re: I have a new diagnosis
« Reply #5 on: Mar 28 2014, 01:27 PM »
Thanks Ashley and Jojo.  Sounds as though you are both suffering yourselves although in different ways.  Jojo, 10 back injections- ouch! I found 4 bad enough.  I hope they have helped?  Does this mean you have had two lots done?

Ashley, I like your pea soup description for your brain  :)  It is very apt.  I get very confused with my migraines and drive everyone mad.  Hope it passes quickly for you.

Offline Giddy

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Re: I have a new diagnosis
« Reply #6 on: Mar 30 2014, 12:25 PM »


 You don't always have a migraine with them, sometimes just the aura.  The last severe attack mean't I lost my speech for over 24 hours and it took over a week to come back fully and I was admitted to hospital to rule out a stroke.  Not a very pleasant experience.  I have been advised to get a medic alert bracelet in case it happens again, which I have ordered.

Now, I always said if I found out I didn't have MD but 'just' a migraine I would dance for joy.  Can I be forgiven (Wobbler?)  for not doing this on this particular type of migraine?  I am having 6 attacks a month at present and it is playing havoc with my life.  I am on meds to prevent it, just got to wait 3 months to see if they work.

Anyway, that is my situation at present, and it may change.  Thanks for reading.

Deb

Deb - I am "Really" pleased for you! ;D I bet you are so chuffed it has got a name! You have also waited a while to find out. I agree that you can just have an "aura" I think they can be worse than the headache sometimes. Glad you have got an I.D bracelet. I think "not being nasty" some of you on here could do with them too :) your MD maybe mistaken for being drunk! We have all got I.D bracelets here.

If you didn't mind me asking - what medication did they give you? I don't think mine is doing much now. Hope that you feel much better soon.  :)

Offline Giddy

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Re: I have a new diagnosis
« Reply #7 on: Mar 30 2014, 03:29 PM »
Me - back again. ::) I am clutching at straws "big time here" - these sound like what I am having and I am on the worst treatment they can give lol... Nortriptyline - That was from a Neurologist as well. I am going to have to get hold of my GP somehow - he was trying to help me with this problem. I have been having numbness/pins and needles continuously on my left side (hands and feet) since Christmas and it is starting in my right side now. They were testing me for M.S. but it was not that.  Thanks for posting this Deb!!! ;D

suzygirl

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Re: I have a new diagnosis
« Reply #8 on: Mar 30 2014, 03:35 PM »
Thanks Giddy.  I posted partly to let people know and partly to help others.  At the end of the day we all learn from each other.  The two links I posted, if you copy and paste them are very useful or just google hemiplegic migraine.

I am on topimariate (sp)  100mg, maximum dose now and have to wait 3 months to see if it is helping. The med you are on is one used to help.  I was on amitryptyline but it made me very very down so I can't take that and I already take gabapentin for nerve pain as I have bulging disks and stenosis.  I hope it works, it is all trial and error with these meds.

Keep a diary of your symptoms, note what makes it worse or better and that will help the doctor.  I have to keep a migraine diary.  I hope you can get your diagnosis sorted soon.  If you want any help, just let me know, I am happy to help.

Take care.

Offline Giddy

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Re: I have a new diagnosis
« Reply #9 on: Apr 01 2014, 02:27 PM »
Glad you have posted your diagnosis - it has helped me a lot. Bet you are glad to know why you don't feel well. I was very lucky enough to go and see my G.P (who was trying to help me with these headaches) yesterday. I have to give the Nortriptyline (now back at 10mg) until mid May to show the Neurologist that I have been trying it. (It does help the headache side of things a bit but, it doesn't help anything else). Then my G.P is (wait-for-it) going to write and let the Neurologist know that he thinks I have got Hemiplegic Migraines!!! I cannot believe it to be honest. So A BIG THANK YOU!! :) :) My G.P said that he was surprised I was not still seeing the Neurologist.

I am so sorry Deb you have this too. I think mine started over 2 and half years ago. No one has got a clue here. It has been staring them in the face all this time :o There have been times when I thought I was going mad. I know why I have Pins and needles/Numbness now. I was being palmed of with either MAV/Optical Migraines.

Thank you for your links - it is very interesting. Sorry, to hear Amitryptline made you feel down. Glad you spotted it. Topimariate is one of the best treatments for it. I think they are all going to sort out something for me after I stop the Nortriptyline. My G.P said that I may end up having a combination cocktail of drugs.

Sorry, to hear that you were not all that well to begin with before the Hemiplegic Migraines came along. Are your other illnesses linked somehow to your Hemiplegic Migraine? I have found some of my illnesses I have maybe linked. I hope that your tablets work. Have you noticed any difference or is it just too early?

I will have to keep a diary - thanks for that. Thank you for hoping I get sorted soon and for your kind offer if I would like any help - I am happy to help you too. I think at the moment I am just learning about it all.

Take Care too. :) - Sorry, for such a long reply.

suzygirl

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Re: I have a new diagnosis
« Reply #10 on: Apr 01 2014, 04:15 PM »
Well, that is good news, if you have finally found an answer  :)  Next thing will be a treatment that works.  So while you wait for the neuro you may as well carry on with the nortytyline.  You have nothing to lose.

Take care.

Offline Giddy

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Re: I have a new diagnosis
« Reply #11 on: Apr 04 2014, 03:02 PM »
Hello! I agree it is good news. I am very pleased that "they" - [it was your topic to be honest!] (I am also lucky I have got a good G.P that wanted to help and listen) have found the answer at last! 8) - If you had not posted this topic - Myself and my G.P would not have known. I think they are looking into other treatments. I have to carry on with the Nortriptyline for another six weeks (I would have been on them for 13 weeks in all ). They do help but, not very much though. They only try to stop the headaches. The aura's/attacks are driving me mad.

Take care as well.  :)

suzygirl

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Re: I have a new diagnosis
« Reply #12 on: Apr 04 2014, 08:41 PM »
I was told that nothing can stop the aura, once it has started.  I asked about it as it the aura that is more problematic for me.  The idea is that once the migraines are under control the aura is as well.

Offline jojo

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Re: I have a new diagnosis
« Reply #13 on: Apr 05 2014, 10:40 PM »
Thanks Ashley and Jojo.  Sounds as though you are both suffering yourselves although in different ways.  Jojo, 10 back injections- ouch! I found 4 bad enough.  I hope they have helped?  Does this mean you have had two lots done?

Hi Deb

Sorry for a rather late reply.

I had 10 trigger point injections done this time. Last September I had 12 done.  So thankfully 2 less this time round. Last time they really helped but this time has been a nightmare and the pain has been a lot worse.

Hope you are getting on ok with your new meds!!!  Just managed to have a little catch up on the site for the first time in ages tonight, have not caught up with all the posts yet.

Take care Jojox

suzygirl

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Re: I have a new diagnosis
« Reply #14 on: Apr 06 2014, 02:36 PM »
Jo I found the first time I had mine that they increased the pain for a while before it settled and helped.  Not enough to convince me to go through it again, I am afraid although I was unlucky and got an infection.  Maybe yours will settle.

Take care.

Offline Giddy

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Re: I have a new diagnosis
« Reply #15 on: Apr 13 2014, 11:29 AM »
I was told that nothing can stop the aura, once it has started.  I asked about it as it the aura that is more problematic for me.  The idea is that once the migraines are under control the aura is as well.

Hello! Hope you are well. I had an idea that you could not stop the aura's once they started. They are also the most problematic thing for me too. I am hoping they will give me something to keep the Migraines under control as the Nortriptlyline does help but, I am still getting the upsetting aura's.

Sorry, to hear about your injections.