Hi from want hope

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Hi from want hope

Post by want~hope on Fri Jun 17, 2011 5:24 am

Hi, not sure really what to say, hmm, ok here goes.
I am 26 and suufer from chronic migraine. I have a beautiful daughter who will be 4 in September. Like most of you I suffer from daily sickness and white orb like lights in the eyes.
I was 4 months pregnant when I woke up with terrible migraine and its been there ever since. I currently see Dr Shanahan at the London Neurology hospital in London. After going through all the different medication (and as you all know there are loads) I was unable to find any thing that would work for me. I never got any relief just nasty side effects. I have had the botox injections which made things worse. Oh and also had DHE which was supposed to have been a 4 night stay stay but turned into 11 nights. I do find things hard and very frustrating. I really hate the fact that I cant be the mother I want to be and feel my daughter misses out on alot. I do like to keep my independence or as others say I'm just stubborn.
I am currently waiting on funding from the PCT to have the occipital nerve stimulator operation. I have been told I have about 18months to wait.
Two days ago I had multiple occipital nerve block injestions, 19 in total. So far no change just terrible neck and shoulder ache from the anesthetic. Was wondering if any one else have had these and how long does it take before they start to work?
Sorry if I sound like a moaner but I already feel some relief to know I'm not on my own.
Well thats my story so far. Hopefully my last one will be titled "got my life back".
Thank You x


Last edited by want~hope on Fri Jun 17, 2011 5:39 am; edited 1 time in total (Reason for editing : Forgot to add a bit.)

want~hope

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Re: Hi from want hope

Post by Tee on Fri Jun 17, 2011 5:49 am

Hello and welcome Very Happy

I am soooo sorry you are having such a crap time at such a young age Sad

Dr S is an amazing caring man, quite a few of us are under him. (oh er that sounds rude lol)

Please do not beat yourself up about your daughter, you will be amazed how kids cope with this - I went through the 'crap mum stage' but a very good doctor took me by the hand and said 'TRACEY it is better to have an ill mum than no mum at all" It was a wake up moment for me. I have 4 kids and they were all under 5 when I went into status migraineous, so they missed out on a lot. But they do not know that. As long as she gets that hug and kiss everyday (which I am sure she does) - she will be fine. Just try to do stuff with her when you can and do not feel guilty when you don't. Do you get a break at all - ie is she at nursery? I found once my twins had gone to nursery things got a little better, as I could sleep during the day.

I am sorry you have not had any luck with any medication - did nothing help - not even a little bit? The ONSI is big step and can take time to get funding - but it can be done - if you need help with that email Kala. She had it done a year or so ago. She has added some notes on here under the ONSI thread, but i know she would be happy to chat with you .

And do not worry about moaning - you are amongst professional moaners LOL We all have our up and down days - so you moan away girl - we totally understand Smile

Glad you found us.

Tee x

PS I so hope that one day we get to see that 'I got my life back post' Smile
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Re: Hi from want hope

Post by want~hope on Fri Jun 17, 2011 6:14 am

Thank you so much for your reply Tee.
My daughter does go to nursery 5 afternoons a week but I cant nap. I roughly get between 2 and 4 hours of sleep at night but in a weird way I'm kinda used to it and have very clean cupboards lol. I clean to try to take my mind off things lol.
I loved what you said about its better than having no mother, I've never looked at it like that. I do try to take her out and she goes to different activities. Only problem is, more I do worse I get then its back to disgusting hospital food.
And I'm glad I've found you too. x

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Re: Hi from want hope

Post by whitzendJane on Fri Jun 17, 2011 6:43 am

Hello glad you were able to find us & Dr S. Tracey reminds me of the 'mum' thing when I feel like you do...it always helps.
Am on my phone at mo & struggling to use teeney keyboard, but wanted to ask welcome you.
Speak soon.
Jane
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Re: Hi from want hope

Post by Sheena Hulston on Fri Jun 17, 2011 7:46 am

Hi
Glad you joined us professional moaners (we can be some days) bounce
Just look at your lovely little daughter... is she smiling.... there you go then.... your doing a good job.
Im under Dr S as well and find him so easy to talk too but sorry none of your meds have worked ...so far!!
We are always here for a chat..or moan Twisted Evil
Sheena
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Re: Hi from want hope

Post by want~hope on Fri Jun 17, 2011 8:12 am

My daughter is always smiling,running, jumping major hypo and at the min thinks she's tinkerbell and tries to fly! Love her too bits. Just realised I have not mentioned my amazing other half who has to put up with me lol. Ooops can't forget him. He works 2 jobs to help with funding to get back and forward to hospital.
I do like Dr S but sometimes just wish he would comunicate with me better. He cancelled 2 of my appointments then I got a phone call from admitance to ask if I could see him in 2 hrs time. I did explain to them it takes me 3 hrs to get there!

I would like to ask if any one else suffers with black out with there migraines. I black out 2-3 times a week, some times more, some times less with no warning signs. Dr S says it's to do with the migraines but I cant find any further information about it. It is scary for me and my little one (who is used to it) and I have broken some bones before in my hand and places where I land funny or on something.
Hope you guys realise I'm gonna bombard you with questions lol. Well I've never found any where that has the answers. Why didnt i find this site sooner.
xx

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Re: Hi from want hope

Post by Tee on Fri Jun 17, 2011 8:29 am

Tinkerbell - love it Smile And Mexican wave for other halves

Sorry you have had appointments cancelled - he went on holiday and it caused a major problem with clinics - do you have his email address? I find he is very good at coming back via email or phone if you need to talk to him in-between clinics. (If you do not I with PM it to you.)

Do you know what type of migraine you have ? I assume as you mention black outs its Basilar or Hemiplegic ? Personally I do not black out, but i do know of others that do - they all wear a medic bracelet - so people know what to do.

Please do bombard the questions - that is how we all learn Smile

Tee xx
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Re: Hi from want hope

Post by want~hope on Fri Jun 17, 2011 8:35 am

To be honest I get so confused with some of the terms I dont know what my migraine is called now. At one point they said it was mild arnold chiari malformation but Dr S changed his mind on that again.
I do Email him and phone but I never get a reply. My GP some times has the same problem. I completely under stand he is a busy man.
I've not heard of the medic bracelets for black outs. Could you please send me some information on that please, I would be really grateful.
xx

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Re: Hi from want hope

Post by Sheena Hulston on Fri Jun 17, 2011 8:51 am

Lol My Five year old grandson loves tinkerbell he had a tinkerbell birthday cake fairy dust and all Fairy Mary tickles me!! and I got him a tinkerbell game for his new DSI.He really does not care but we did put peter pan on it to try to "Boy" it up a bit !!
I have a medi bracelet you can get them from argos they are also called SOS bracelets they have all your info on them and I have ICE on my phone as its recognised as "in case of emergences" its my hubbys no. I have stroke like symptoms and dont want to be confused if I collapse or cant talk!! which happens as I have HM
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Re: Hi from want hope

Post by Tee on Fri Jun 17, 2011 9:03 am

Oh that is interesting - you can normally see that on a MRI scan - you may have already checked it out - but this might help

http://www.dizziness-and-balance.com/disorders/central/cerebellar/chiari.html

Have a look at these too - it might help clarify which one you have.
http://migrainetalk.forumotion.co.uk/t185-types-of-migraine

If not let us have the full details of what happens when you have a migraine and we might be able to draw up a short list for you to talk to Dr S about. Knowing which one you have seems to help ie giving it a name.

There are a number of companies that to the medic bracelets - you can get necklaces and other stuff too:

http://www.medicalert.org.uk/
http://www.theidbandco.com/Home.aspx

You need to be able to write a bit on the one you choose - ie that you have migraine and the type and what they need to do. But also the contact number of someone who knows you well, so they can explain the problem.

Hope this helps


Tee xx
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Re: Hi from want hope

Post by Tee on Fri Jun 17, 2011 9:05 am

Oh the ICE number is a very good idea - I have that on my phone too - you just add the word ICE to a contact name and the medics know that is the person to call. Smile
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Re: Hi from want hope

Post by want~hope on Fri Jun 17, 2011 9:20 am

It did show on the MRI, Dr S said its only a 1/1000 chance it could be associated with it. I have ICE in my phone and I carry medi cards in my purse. Last time ambulance was called they couldnt unlock my phone to check lol.
I will get a bracelet and find out the name of what I have.

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Re: Hi from want hope

Post by want~hope on Fri Jun 17, 2011 9:48 am

I had a look at your link and found it very interesting. Its hard to pin point what type I have. My migraines have never gone away, on the 1-10 the are mainly at 8 and rise to 10 far too often Sad
They have got worse as time has gone on. I often where sunglasses as the light makes it worse and I have my computer screen dimmed so I doesnt bother me so much. Twice I have lost my sight for roughly 3-5 mins and scared the hell out of me. I get the aura most of the time. I have not had any fits (well not to my knowledge) I just go unconcious for about 2-3 minutes. I do suffer with confusion and my memory is not so great but I've always put it down to lack of sleep.
I am so relieved to be getting this information.
xx

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Re: Hi from want hope

Post by Tee on Fri Jun 17, 2011 7:13 pm

Good morning Smile

All the types of migraine can go chronic - ie 15 or more days per month. Or into status migraineous - ie everyday. And can range from a 1 - 10 scale.

If you have aura everyday - you get the added title of persistent aura.

Have a look at this list too: you might be surprised what constitutes an aura http://migrainetalk.forumotion.co.uk/t250-types-of-aura

From what you have said - it sounds like classical migraine - BUT because you pass out Basilary should be added to the list to talk to Dr S about. Do you get any numbness or weakness in your limbs - normally one sided?

You are not alone with the glasses - a lot of us wear them a lot too - even in the winter - have a look at this thread

http://migrainetalk.forumotion.co.uk/t226-new-research-_-tinted-lenses-may-reduce-activity-in-the-brain-associated-with-migraine

Sleep is a big thing with migraine and getting too much or too little can make things worse - have you ever taken anything to help you get to sleep during the night?

Hope your having a pain free day

tee xx
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Re: Hi from want hope

Post by want~hope on Fri Jun 17, 2011 10:38 pm

Pain free day... hmmm sorry can't remeber what those words mean lol.
I have never taken any thing to help me sleep from Dr's as I'm always worried I wont hear my daughter wake up. I have tried natural herbs to try and help like lavender and other chinese bits. They do help me relax but not sleep. I have had numbness and pins and neddles in my hands but I've always put them down to medication. I am currently not taking any thing as we are waiting to see if the multiple injections have done any thing. I'm sad to say they have done nothing Sad Where the 4 went in the base of the head it just added neck and shoulder pain to my list.
Every thing is resting on waiting to have the ONS. I should only have about 17 months to wait now.
Am I the only one who gets really annoyed when I have to wear glasses and people make silly comments like "hung over are we" and things like that. I usually do have a good sence of humor but some days you just don't need to hear it. Or when you have a really bad day, come out of hospital and people say "smile, can't be that bad" if only they knew.
Any way rant over lol.
Thanks again for all the info. Its facinating looking through it all.
xx

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Re: Hi from want hope

Post by Sheena Hulston on Fri Jun 17, 2011 11:11 pm

I had it in Tescos one day , after trying to get round and decide what I wanted some S****y little girl snapped at me that a till was free further down as I stood in a queue with my dark glasses on on a rainy day I said cheers and she said "a bit of a rough night was it" I snapped "no ill actually what's your excuse" and left in tears!! There just comes a point when even I cant take any more and I'm tough, trust me.
Just trying to get up the nerve to go out to town on my own now, got to be done, but got to cross 2 busy roads, my main nightmare. A decision!! Do I cross or not?
Even my hubby says "smile it cant be that bad" or my main gripe "Whats up?" Love them all x x x
I get tingling too!
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Re: Hi from want hope

Post by Tee on Fri Jun 17, 2011 11:57 pm

Oh sweeties you are not alone -we have all had that conversation with ignorant people - I do find the swearing technique works Smile (well it is doctors Smile orders http://migrainetalk.forumotion.co.uk/t43-wtf-study-shows-swearing-reduces-pain)

I have had my fair share, from comments thrown at my as I walk pass to full on in your face remarks. The worse being a workman on site (hubby does property development and often asks me to go on site and complain about something! He says they do it better when I ask!!! Well this one time this guy said, (amongst other stuff) 'Who the hell do you think you are, some pre Madonna, wearing sunglasses - its raining!' I just said that is a conversation for another time and walked away and cried in the car. My hubby, bless him, a few weeks later, made a point of bringing up the problem with this man in normal conversation. It obviously hit home as a few months later he pulled me to one side and said sorry.

I am seriously thinking of having a little card printed with some of the facts on to give to these people. Education one by one LOL.

I think this would be a good topic to write about come migraine awareness week - what do you think?

Oh re the sleep drugs - I had the same worries and I had twins - but I started on Amitriyline and what's good about that one is that you can start on a very very very low dose - ask for it in the syrup they give to kids and start on just 2 or 3mg and then work up slowly. This way you will never be knocked out. Smile


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Re: Hi from want hope

Post by whitzendJane on Sat Jun 18, 2011 2:44 am

I get total blackouts and complete blindness...more or less as you described. Was told all connected to migs generally.
Used to get 'drop' attacks where I would just hit the deck.
I began to notice these happened when I was pushing myself too hard. Now Iam better at judging when they are brewing, so I haven't blacked out 4 two years and so far this year only 2 instances of blindness.
As for waking at night with sedation. I have twin boys (4) with severe respiratory probs & despite needing help with mirtazapine I have always woken when they need me.
It's a very personal choice but sleep is deffo a biggie in migraine management & coping generally LMAO. You may benefit from a low dose just to get you off 2 sleep but not 'knocked out'.
Kindest regards
Jane
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Re: Hi from want hope

Post by onandoffagain on Sat Jun 18, 2011 3:58 am

hey, never worry about the dark glasses. I wear mine in the cinema! x

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Re: Hi from want hope

Post by want~hope on Sat Jun 18, 2011 5:32 am

The no sleep thing doesnt seem to bother me much more. I seem to have just got used to it.
My black outs are the same I just drop down with no warning. I kept daily activities and food diarys to see if there was any patern but no such luck. I've even had them sitting down (dont mind them ones so much, alot less bumps lol)

I've never worn my glasses in the cinema yet lol. But if I did and some one said any thing I'd just say ar cr*p thought it was 3d lol

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Re: Hi from want hope

Post by Tee on Fri Sep 30, 2011 8:12 pm

Hello, just wondering if you had heard from the pct yet? How are things? Xx

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Re: Hi from want hope

Post by want~hope on Sat Oct 01, 2011 4:41 am

I would love to say things have been a bit up and down but just seem to be going down, down, down. Since my last post I have had another MRI scan and been in for the 5 day telemetry stay but had no results from any thing. I'm feeling really frustrated. Dr Shanahan was supposed to come see me while I was in but didn't turn up and I've been trying to contact him for weeks to see what is going on. I've not heard any thing from the pct yet but my fingers are crossed that I hear something soon.
Sorry for not sounding too cheery, just need to try and pull my self round. Pain, tiredness and the frustration of not knowing anything is getting beyond draining now.
Xx

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Re: Hi from want hope

Post by Tee on Sat Oct 01, 2011 7:58 pm

Oh I am so sorry -Dr Sis normally so good grrr Do you email him-I find he is better with emails?

Hang in there - one day at a time. It is so frustrating at time, but you will get there.........

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Re: Hi from want hope

Post by whatgoes? on Sun Oct 02, 2011 11:59 am

How I wish I could send you a package of what ever you need to get better. I feel so bad for you because I have been in a similar place before. You might want to look up somethings I posted the last two days on Catfrost's thread in regards to relaxation helps, and sleep. Sleep is really important and yet I know how hard it is to get there. I would really recommend watching the caffeine for several reasons, and no naps during the day time. Those two things really did help me to start having quality sleep. I have taken Provigil and now Nuvigil to help with my morning "wake" problem. It also helps to regulate sleep patterns at night. And going to be the same time every night and getting up the same time every day. Chronic pain is a bear and I know how it disrupts sleep too. Have they ever used KT Tape for the neck pain? It is not like anything you have tried before, it has stretch, is used by olympic athletes, supports and allows the muscles to heal or regroup. Sometimes the cervical neck pain and migraines are can be caused by structural or other problems in the trapeze and neck area. I used was amazed at the instant results. This tape is amazing, stays in place even in water. I hope you find some relief soon. Best wishes, Jerri

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Re: Hi from want hope

Post by want~hope on Mon Oct 03, 2011 5:19 am

Thanks for the advise, the tape sounds great, could you send me a link so I could get some. I don't nap during the day because I have a hypo daughter lol. Gonna be bugging Dr S again tomorro and hopefully get some answers from him.
I don't think its so much me its affecting I always think it's my daughter who this isn't fair on. We're good tho we're a tough family xx

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