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Author Topic: Migraine clinic appt  (Read 3239 times)

suzygirl

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Migraine clinic appt
« on: Jan 25 2014, 03:30 PM »
I have suffered from migraines since a teenager.  Lately they have been crippling and so the balance clinic referred me to a migraine clinic.  I didn't even know they existed!

I saw a clinical nurse specialist who noted all my symptoms and what meds  I  had tried and what worked and what didn't.  No clear way to know if some of my other symptoms are caused by migraine except by trial and error.  She will prescribe a migraine preventer med and if it improves my symptoms then they are related to migraine, if not then they are down to something else.

I am going to be put on Topimate (sp?), with Propanol and Temazepam as extra if needed.  It will take up to 3 months to see if it helps or not.

It will be absolutely brilliant if my migraines can be eased.  I am interested to see if it helps any of my other neuro symptoms.  Would be amazing if it did, after all this time!

Just thought this may be of interest to other migraine sufferers.

Offline jojo

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Re: Migraine clinic appt
« Reply #1 on: Jan 25 2014, 09:59 PM »
Hello Deb

Thank you for sharing that info with us.

Hope the new treatment really helps you and you get relief from your Migraines.  I get migraine and for it I take Migraleve which really does help with a decent amount of rest and sleep.

I know you suffer with other health problems as I do.  So just to say take care and try to rest as much as possible.

Take care Jojo x

Offline Jane_Jig

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Re: Migraine clinic appt
« Reply #2 on: Mar 07 2014, 08:34 AM »
The latest theory for my dizzy spells is vestibular migraine. I was prescribed Amitriptyline. I took one tablet of 10 mg and I was off balance all of the following day and so I stopped taking it.

I don't know what happens next. The dizzy spells and their frequency and unpredictability are ruining my life

suzygirl

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Re: Migraine clinic appt
« Reply #3 on: Mar 07 2014, 09:07 AM »
Amitryptyline doesn't suit everyone, it made me very down and I had to stop taking it.  There are other meds to try, don't despair.  I am up to 50mg Topimirate today, so not long till full dose now.  Migraines are miserables, migraines and MD seem to go hand in hand for a few of us.

Offline Graham

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Re: Migraine clinic appt
« Reply #4 on: Mar 30 2014, 09:16 PM »
Hi - Suffering from MD since 2008, from last Sept lots of migraine with dizzy spells - but not the full spins I used to have with MD. The general dizziness was hard to live with and effected quality of life. After chat with GP tried Amitriptyline, just 10mg and whilst not a perfect cure I am much better, been taking it for about 6 weeks.   Yes it is difficult to get used to this medication, makes the mouth very dry when you first start to take it - I took about 2 weeks to get used to it and took only 5mg (by cutting the very small tablet in half) for about a week. Also missed taking it deliberately some nights - it is best taken at night. So at moment its working for me- did not realise till looking into it that migraine and MD often sit together.

Offline Steadyasyougo

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Re: Migraine clinic appt
« Reply #5 on: Apr 11 2014, 09:45 PM »
Hello

I get occasional migraines and read about taking Feverfew. It is completely natural. I am not saying it would work for everyone but it has worked for me. Took about 3 months to start working and it replaces my migraines with a bearable headache, no vomiting etc.


Offline Rosemary

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Re: Migraine clinic appt
« Reply #6 on: Apr 13 2014, 06:57 PM »
A lot of the medication for migraines seem to concentrate on pain relief for the headaches and I know that is the main problem for a lot of people (I sometimes get the "usual" migraine and get a headaches after the aura. BUT have been diagnosed with a 2nd rarer form which is giving me the stroke attack/symtom and no headache!

Have an appointment with my GP to discuss if there is anything I can take on a daily basis as prevention (so many seem to be taken once they start)

Yes I am one of the ones with MD and migraines too. :(





suzygirl

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Re: Migraine clinic appt
« Reply #7 on: Apr 14 2014, 09:31 AM »
Rosemary, is that the Hemiplegic migraine?  That is what I have been diagnosed with.  I have been started on Topiramate as a preventative medicine.  It is amazing how it seems to go in hand in hand with other disorders.  What meds are you taking to prevent it?

Mine have taken over my life, I had 3 last week, between the attacks and recovery I spend my life in bed with the curtains shut to avoid the light. :(

Really hoping the meds work!

Offline Rosemary

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Re: Migraine clinic appt
« Reply #8 on: Apr 15 2014, 09:33 PM »
Hi Debs, the consultant didn't really give it a name, just that it can mimic a stroke and does not always give a headache with it.  Am waiting for another appointment with him but it looks like it will be the summer!

  In the meantime my GP contact me and the consultant had suggested to her topiramate as a prevention but after talking to me (phone today) and noting although the attacks can be bad and last a few hours/days, I haven't had one since Oct 2013 she has suggested and prescribed sumatriptan which you just take as soon as the migraine starts and it is surposed to help straight away

My GP says if they start up again then come and see her and she will look into a more preventative medication or fast track back to the consultant - only side effect of Sumatriptan is it makes you sleepy (really, after a migraine!)

The only thing that puts me off after looking at the Internet that it seems to concentrate on pain relief for the headache and it constricts the blood vessels in the brain (what if they suddenly decide that it is mini strokes after all!)

Going to get the precription and try them anyway and hopefully if it works as well as the GP thinks then will know it is migraines

Debs how are you finding the topiramate? GP said they came with a few side effect?

Take care x

suzygirl

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Re: Migraine clinic appt
« Reply #9 on: Apr 16 2014, 08:29 PM »
Rosemary, triptans are contraindicated in hemiplegic migraines as it increases the risk of stroke.  Some people are prescribed them, I was was taking them for my migraines before it was realised that they were HM's but they were not effective anyway. 

I use an ice pack on my head as it helps with the pain, nothing else does for me.  I also go to bed and try to sleep them off, I went to bed at the first sign of one the other day and it worked and I didn't get a full blown attack.  So I suppose it is like other illnesses and learning tolisten to the signs maybe? Or maybe I was just lucky? 

The topirimate is not working at the moment, I had 3 attacks last week.  I am on 100mg a day.  I have been fortunate in having few side effects except weight loss and a slight tingling in the hands and feet occasionally.

Apparently you have to work out your triggers as well, which I am trying to sort.  I don't always get a headache with my attacks it is the aura that troubles me the most and you can't stop the aura.  I lose my speech, get confused, fall, get dizzy, deaf, tinnitus, aural pressure, weakness on my right side and tingling, paralysis, and many more symptoms it can last from a few hours to a few weeks.

Let me know if I can help you in any way.

Offline Giddy

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Re: Migraine clinic appt
« Reply #10 on: Apr 20 2014, 11:28 AM »
Hello All! :)

Deb - Hope you are feeling a lot better now. I am up and down at the mo. How long have you been on your Topirimate for? It must be quite a while. Most probably the most stupid question I am going to ask but - do you think you are not agreeing with it now? Surely, it should have stopped the attacks/made them less by now.

Rosemary - I am not surprised they may suspect you of having Hemiplegic Migraine. As you know we both have quite a few of the same symptoms and had the same tests. My G.P thinks I am having Hemiplegic Migraines.

Steadyasyougo - Yes, I have heard that Feverfew can work. Glad it helps you.

I've got to go back to the Doctors in a couple of weeks time as my 12 week Nortriptyline course is nearly finished. The Nortriptyline is not doing much but, it does cut the headaches down - I don't fancy climbing the walls everyday if I have to come off them. The aura's are still there driving me mad. >:( I can see more colours in them than a paint chart! My G.P won't let me go on Topirimate. He thinks I will be on quite a few tablets etc... Like a preventer type thing.

I have had to give up on my Vestibular exercises for now - it is winding the Migraines up. I hope to re-start them when I have got the proper treatment for the Migraines.

suzygirl

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Re: Migraine clinic appt
« Reply #11 on: Apr 20 2014, 07:44 PM »
Giddy, I have had to build up to the correct Topiramate dose.  I am now on the correct dose, I had 5 days free this week which is brilliant for me.  I am cautiously optimistic but trying not to get too excited.

You may be able to stay on the nortyrptyline as well as the new med as people often take more than one med and sleep is really important for helping the migraines.  I have been given temezapam to help me to sleep when a migraine hits.

Take care :)

Offline Giddy

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Re: Migraine clinic appt
« Reply #12 on: May 03 2014, 10:01 PM »
Hi Deb

How are you doing? Glad you have been having some good days.

Yes, I am glad to say that I am staying on the Nortriptyline! :) I am slowly going on to a slightly higher dose. They "think" and hope that this may stop the "Aura" in time. I am glad that they have given you Temezapam to help you sleep when you have got a Migraine.


Take Care too! :)

suzygirl

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Re: Migraine clinic appt
« Reply #13 on: May 04 2014, 06:06 PM »
Hi Giddy

Lets hope that the higher dose helps you.  I have just had a really bad attack, lost my speech on the Thursday then couldn't walk due to the right sided weakness.  It didn't lift till Sunday night and took me a week to recover from.  Absolutely awful.  Of course, hormones didn't help, I always have a bad attack then but this was especially  debilitating.

Hoping for a better week next week  ::)

Offline Nuttyneddy

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Re: Migraine clinic appt
« Reply #14 on: May 04 2014, 06:56 PM »
Oh no, that sounds horrible  :(

I hope you are feeling better soon!

Online Ashley

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Re: Migraine clinic appt
« Reply #15 on: May 04 2014, 06:59 PM »
Hi Deb, only just seen your latest message. That really does sound horrible. Hoping, with you, that this week is a better one for you ;)
Take care
Ashley

suzygirl

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Re: Migraine clinic appt
« Reply #16 on: May 05 2014, 09:31 AM »
Thanks Ashley and Nutty.  I am not going to lie they are really horrible things, however MD is not nice either.  So we will just support one another.  How are you doing?

Deb

Offline Nuttyneddy

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Re: Migraine clinic appt
« Reply #17 on: May 05 2014, 09:57 AM »
Only one spell of vertigo towards the end of April (after about six weeks free) but all the time I feel like I have concussion (loud screeching tinnitus and a kind of woolly feeling in the top right hand quarter of my head). Balance is only a little bit off now most of the time.  I am very glad to have had the MRI to know there's nothing in there that shouldn't be!  Only another couple of months until I finally get to see the ENT so maybe he will be able to offer some help.

suzygirl

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Re: Migraine clinic appt
« Reply #18 on: May 05 2014, 08:31 PM »
Glad your mri was clear it is always a relief.  Hopefully the time till the ENT appt will fly by. 

Offline Giddy

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Re: Migraine clinic appt
« Reply #19 on: May 10 2014, 07:56 PM »
I am not going to lie they are really horrible things

We agree and now call them the "Hemi's from Hell" They are the worst thing I have ever had. (M.D etc.. is also not nice as my Mum has got it).

Glad your MRI scan was ok Nuttyneddy.

Deb - So sorry to hear that you have had a bad one. I hope that you feel much better now. They take ages to get over. Thank you for hoping the higher dosage helps. I know what you mean about side weakness my left side has always got pins and needles in it and feels "numb ish". It is trying to go on my right side.