chronic daily migraine & visual distrubance, finding daily life a struggle, please help

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My Lovely
Regular Member


Date Joined Feb 2012
Total Posts : 54
   Posted 2/19/2012 3:27 AM (GMT -6)   
I don’t know where to start, I’ve been reading what everybody is saying and I feel even more lost and upset, I am so very very scared that I will be like this for many years to come, that it’s just never going to get any better. I’ve been suffering with chronic daily migraine for a year now, I cannot cope or handle my pain and they way my life has changed, it is intolerable, my life has stopped, I say life, it’s not a life. I had everything ahead of me, had it all planned out lol, yes I’m sad , my partner proposed at xmas 2011, and this illness is running everything I couldn’t celebrate, I cant plan to get married, It’s all disappearing out of my reach. I’ve been unable to work for a year now.
Please does anybody out there have any positive outcome of having chronic daily migraines with visual disturbance? I need something to keep me strong, it just seems like there’s no hope out there.

I’ve just turned 26 years old, I have no children, I live with my fiancé and our kitten he’s the only thing that keeps me going. My partner is very good and extremely patient but I am so alone, I am incredibly frustrated, angry, tired, and depressed, I cry at the drop of a hat, I feel like I’m going to lose everybody, especially my friends, I feel like a burden. I wake up with chronic pain in my head and I go to bed with pain, it’s incredibly disabilitating. I have pain all the time, it never ever goes! It differs with levels of pain, ranging from 1-10, the same goes with my visual disturbance. My head pain is generally always over the left side of my head, over my eyebrow on the inner of the brow and then spreads all around. The left of my face is numb almost all of the time, all around my eyes, my left face can drop slightly too. Every 30 mins is different in my day to day life, my migraines can intense in pain within seconds for no reason at times. im up down up down all day, no morning, afternoon and evening are ever the same pain wise.

I have had migraines since the age of 15 (we think mine started from having the contraceptive pill). I then had the Implanon contraceptive inserted into my arm and i had this for 7 years, i then had it removed and had the mini pill for few months then another contraceptive pill for another few months, the consultant basically thinks this is what has caused my chronic daily migraines. I’ve been suffering with the chronic DAILY migraine since September 2010. I have almost been house bound for a year now. I have had to stop driving, I can’t go out into shops as the florescent lighting is horrendous for my head and eyes, I struggle to travel in a car at times as I feel disorientated and all makes my vision and head pain worse. The natural light affects me, if it’s too sunny, too dark and dingy etc all affects my head and eye sight. I find it incredibly hard to have eye contact and talk with people, this makes my head pain and vision awful, it gets worse and worse the more I talk. Evan if 2 people are talking in the same room as me and I’m not included in the conversation, this also affects my head, the way somebody talks effects me, their tone of voice. I struggle to read, to look down, to use computer, to use my mobile, background noise, concentrating, to talk on the phone, if the postman comes to the door and intropes my routine this also makes my pain and vision worse, I struggle a evening meal for my parneter. I can’t leave my house to go for a walk on my own as I feel dizzy most of the time due to my vision; my confidence has hit a massive low as expected. Every single aspect of life is difficult no matter how simple it was and easy it was to do before, it is all now so incredibly hard.

On top of my disabilataing head pain, I also have the visual disturbance all the time too, this also ranges in levels from 1-10, it goes up and down throughout the day and can change every within minutes. I do find that my vision tends to be better at night, in the evening, when it’s dark. People ask me what’s worse the vision or head pain, but they are both just as bad, as they both stop me from doing things. Apparently my vision is like vertigo, this is constant too. I have had my eye sight tested and I have almost 20 20 vision. I can see everything, but it’s like everything is moving a mm, shaking, which leaves me feeling disorientated and dizzy, I find it very hard to describe this part. When I was 15 I used to get the normal watery vision with the typical migraines, but now has turned into the above. Also when I was 15 I noticed that white rooms would set this off, also commuters were my trigger – both still are to date.

I feel like I am being judged all the time, the rare occasion I am well to go out, or manage go with my partner to a shop or we potter to a garden centre as these places are quiet and outside with not many florescent lighting, and we bump into someone – I’m being judged – ‘she’s fine, she looked good’! But what they don’t know. I have had to pace myself, I have had to do NOTHING before, I’ve had to make sure I go to bed very early, so I’ve slept well, I have to slowly get up in the morning, I can’t get dressed in the morning straight away, I have to at eat at regular times, I have to have a shower around lunch time as if I have it earlier it wipes me out, as I get exhausted. I have to have somebody drive me, I cant look through the cupboards, sort out the list as all upsets my head – therefore a simple food shopping trip is not simple, but my friends don’t see this, they see me out, having a chat, being nice and smiley for abit, they don’t see the before or after effect. This is what I am finding so hard to deal with, I know I shouldn’t care what people think, but I do, and I get so frustrated that you CANT SEE PAIN! It’s almost like we need a sign us, my head is in a lot of pain! All the time!

Things that’s help: ice, ice is amazing, I have ice packs in my freezer, they are always on my head
The only time I have relief from head pain and vision is when I’m in the shower – no idea why, I tend to have very very very long showers lol, apparently this is the case for most of us.
Massaging my head.
I also have noticed I generally pick up at night time, when it gets dark – don’t know why?

A good day for me is I’m able to get the hoover out, tidy up and clean our tiny 2 bed house, yes it takes me forever, but that’s a achievement, it sounds crazy to a 'normal' person, but when I’ve achieved that I feel amazing, I feel 'normal', it’s like when I’ve managed to have a girly friend over one evening for a few hours, it’s amazing to feel 'normal' to socialize, they don’t know how much it means, even if they do have to come to me and I can’t go out, the little things like that mean so much. It’s insane how much you take for granted when you’re well isn’t it, but I suppose that’s life, all I can say is, it will only make us stronger ladies and gents
There’s one song that really does keep me going, it’s by James Morrison – have a listen if you can, it’s called ‘one life’ makes me cry.

Tablets and things ive tried so far:
Verapamil
Nortriptyyline
Sumatriptan
Topiramate – the most awful tablets i have ever tried! Side effects were horrendous!
Herbal remedies
Acupunture
Cutting foods out/caffeine etc

I’m just about to try botox injections, does anybody have any positive news on this please?
Is there anybody in the Leicestershire/midlands area that has had the botox injections on the nhs and if so who did this and where at?

If the botox don’t work the next stage is the try some tablets called Flunarizine, has anybody tried these? What did you think?

Thankyou for taking the time to read this, i really do appreciate any help, advice, info, just anything, please do comment no matter how small the comment, anything will help im sure. Evan if nobody can help me and this can helps somebody in the begining of diagnosis, please i do give you one peice of advice...stand strong to your doctors/consultants, they dont always know best, you know your body, you know your pain, they dont live with it, make sure they know just how much it effects your life.
Sorry for the essay LOL :-) And the spellings smilewinkgrin Thankyou again

mercyme
Regular Member


Date Joined Feb 2005
Total Posts : 310
   Posted 2/19/2012 8:14 AM (GMT -6)   
My lovely, I know your pain! I don't deal with the visual problems, but deal with chronic migraines everyday. I have tried so many meds topamax, imitrex, maxalt, relpax, zomig, zanaflex, zonegran, lamictal, lyrica, toradol, many, many supplements, botox injections, nerve block, DHE protocol iv in the hospital at UVA in Charlottesville Va. I know I left out a few meds but can't remember them all right now. It's so very frustrating when you deal with migraines day in and day out without any pain relief at all. It's one neurological disease that for sure makes you feel so alone. I just got a e-mail this week from a church friend who said "You look so good, no one would ever guess you deal with that much pain!" that's the thing it's no visible to others so they don't take it seriously. I don't feel like my husband fully understands what I go through, though he is somewhat understanding. He never even has a "Normal" headache.

I had epilepsy brain surgery in 2002 and thank God it was a success! So I know that if God can bring me through that He can bring me through these chronic migraines. Without His strength I'd never get through this! I feel like I know more about my migraines than the neurologist does. They have just started asking me what I want to try now. That drives me crazy!! I'm not the doctor. I want them to tell me what might help me! I don't see my neurologist until the middle of March. Right now I take zanaflex at night mostly for my neck pain, lamictal more less for my safety net to make sure the seizures stay away, klonopin to help me sleep, and that's about it! Once to twice a week I will take toradol but I don't want to take that to often because of side effects.

I know what it feels like to feel isolated. I have had to turn so many family events down because of my migraines. I can't worry about what others think of me when I say I am sick and they are looking right at me thinking she looks fine! lol! Yeah it's in my head and you can't see the pain, but believe me it's There!! I will say a prayer for you lovely. Never give up Hope and keep your Faith!

Blessings,

Mercyme

jobell
Regular Member


Date Joined Feb 2012
Total Posts : 29
   Posted 2/19/2012 7:13 PM (GMT -6)   
My Lovely, have you had a MRI done? It sounds like you may have a tumor. Your symptoms of waking with a headache and concentrated pain by your left brow.

SmurfyShadow
Veteran Member


Date Joined Dec 2008
Total Posts : 2386
   Posted 2/20/2012 1:47 AM (GMT -6)   
MRI & See a neurologist
"The Walking Medical Mystery"

Too many Allergies / Too many RXs & DXs

A Rare Gem for Doctors and Guinee Pig
~Medical Caregiver and Doctors Worse Nightmare~

My Lovely
Regular Member


Date Joined Feb 2012
Total Posts : 54
   Posted 2/20/2012 3:48 AM (GMT -6)   
Mercyme: Thankyou for support and replying to me :-) i feel exactly the same too, it so frustating, i feel like i just want to screem, but i cant evan do this beacuse my head wont let me. My partner is the same, he does try he very very best, but its so dam hard, i do get this, but i am just getting so frustrated with everthing, everyone, the whole situation, i was such an independent person, i wouldnt rely on anyone, i loved to be strong and get things done myself, and now i cant do anything. I think i feel so depressed right now is because ive been reading what everybody has been saying who has chronic daily migraine and there seems to be almost nobody with with a possitive outcome, and its just made me wosre, its left me with no hope. I turned to the computter hoping id find some answers or possitivity, but its made me feel worse than ever. Ive hit an all time low. Can I ask you Mercyme, how did you get on with the botox injections? and the nerve block? as this is my next step. Good luck to you

Jobell & Smurfyshadow. Thanks for replying :-), yes ive had a mri done, it came back normal, as at 1st they did suspect a stroke, but it wasnt.

Ive been to see 3 neurologist's. All 3 concluded diagnosis on Chronic daily migraine with visual disturbance - vertigo

Violet Rose
Regular Member


Date Joined May 2011
Total Posts : 48
   Posted 2/20/2012 4:43 AM (GMT -6)   
My Lovely,
 
I read your story and I really feel for you.  Don't ever think you are alone in this, I thought the same until I joined some migraine forums and realised that many of us are dealing with this on a daily basis.
 
My story is similar to yours although I don't suffer from visual disturbances.  Please don't give up hope, I've suffered migraine for 23 yrs now to varying degrees and often thought I would forever be like this but in the past 4 months I have had a turnaround due to very carefully controlling my diet and other triggers.
 
My life is also very restricted and so much of what you can say I can really relate to, especially about your friends not understanding.  Nobody understands this illness unless you suffer it yourself or you live with someone and have SEEN a migraine in full force and the effect it has on the sufferer.  I too live with my partner and he is the only real support I have in this. I also cannot work anymore, I am never well for long enough.
 
However, I have found that I can really limit my pain and frequency of migraine if I follow a very strict diet and lifestyle routine at all times.  I have to eat right, sleep right, be careful of every single little thing that might trigger me, talking to much, laughing to much, getting too excited or sad, going out of the house for too long, being in a room with lots of people talking....all these things can trigger me in minutes. If I can avoid all those things I can be well for days at a time, of course its not that easy and often life has a way of disrupting my routine and it sets of a migraine that can linger for weeks.
 
I too have tried many drugs but not had any relief, I haven't tried topomax as I heard so many horror stories I'm scared to.  However thankfully triptans do work for me in temporarily supressing a migraine but obviously you can't use those every day so I only use them if I really have to.
 
As I said the past 4 months I have been MUCH better, am no longer in daily pain and I now can go up to 3 weeks with no head pain which has never happened in almost 24 years.  I did this by carefully following an elimination diet and cutting out all foods that trigger me.  For me its all foods with nitrates and tyramines in.  I can't tell you what an improvement this has made for me. 
 
I wanted to pm you a link to another forum that I belong to that has a been very supportive and informative but there is no pm option here so I'll link it,
 
 
lots of people there with similar stories and it always helps to sound off to people that understand :)
 
Take care
x
 
 

SmurfyShadow
Veteran Member


Date Joined Dec 2008
Total Posts : 2386
   Posted 2/20/2012 10:38 AM (GMT -6)   
how long ago was your MRI? have you wrote down everything you ate and drank as well as when it started and looked for common factors?
have you tried to write down all of your daily activities to see if its from something like sun, water, so on?

iF its hidden its probablys something like msg, something in the air, so on
"The Walking Medical Mystery"

Too many Allergies / Too many RXs & DXs

A Rare Gem for Doctors and Guinee Pig
~Medical Caregiver and Doctors Worse Nightmare~

My Lovely
Regular Member


Date Joined Feb 2012
Total Posts : 54
   Posted 2/20/2012 11:26 AM (GMT -6)   
Violet Rose: hi, thank you so much for your kind thoughts and words, its amazing how nice it is just to hear that theres people out there that are going through the same thing and get it! and have the same frustration as me. my gosh 23 years!!!!!! thats some time, i dont know how you have handled this, all i can say is you must be amazing :-) im sure you are :-).

I am the same, i already know i have to pace my day, i have to have routine, just like you, and if it gets broken, something disturbes it, evan if one of my parnters family members pops over unexpexted it totally kills me off! im the same, i too have to get sleep, eat at right times, no stress (easier said than done), eleminate as much noise/talking/eye contact/lighting etc etc, generally pace pac pace. im only just starting to realise this now. everything you say relates to me, just about anything and everything upset my head and vision.

You say about topomax/topiramate, this is the drug im just stopping now, im in the middle of decreasing the dose, i have never been on a drug so awful! i suffered almost everysingle side effect going, it was horrendous, it didnt do anything for my head pain but it did ease my vision. I tried this drug for 6 weeks, I felt as if somebody has removed my brain! I couldnt think/function.

Thankyou for you adise and guidence :-) and im so happy for you that you are having pain free days, i can imagine its amazing, its so lovely to hear some possitive news!!! Ill take a look at that link, thanks



SmurfyShadow: hi, I had MRI March 2011, Yeah ive had a diary from the very start of it all, ive written everthing down: when head was painfull and vision was bad, ive noted if it was dark, light, sunny, dull and what i was like, etc. But there seems to be no link.

:-) Thanks :-)
My lovely

sunnie1133
New Member


Date Joined Mar 2011
Total Posts : 8
   Posted 2/20/2012 8:59 PM (GMT -6)   
have you had an LP?

jewishmother
Regular Member


Date Joined Feb 2011
Total Posts : 92
   Posted 2/23/2012 2:53 PM (GMT -6)   
Just a quick question.............the computer screen is not friendly to my eyes today...........the drugs you listed are all preventatives I think - what do you take as an abortive? For me I know that vicodin can really cut the pain and give me a little relief. Once the pain cycle starts it is important to try and break it with an abortive drug. If you have tried abortives do they help? hurt?

Gator4life
Regular Member


Date Joined Apr 2011
Total Posts : 64
   Posted 2/26/2012 3:34 AM (GMT -6)   
Vicodin? Haven't tried that yet. My neuro just gave me 'midrin'. What a joke! The only thing that has even come close to helping was hydrocodon. Unfortunately, I can't take those pills every day. I take that back... Excederin extra strength used to help. (the early days) Not anymore. Now I just live in pain almost every day. Sigh... Still hunting for relief! You're not alone.... I share your pain... Stay strong and have faith in God. (if you're religious) eventually, we'll get through this.

My Lovely
Regular Member


Date Joined Feb 2012
Total Posts : 54
   Posted 2/26/2012 10:38 AM (GMT -6)   
Jweishmother: Hi thanks for responding, Ive just been taking the daily presentitive at pressent, at the min im on topiramate, which hasnt helped my head at all, but ive been very scarred to take any other tabs on top on this, as ive been warned by my consultant it can lead to medication overuse headeache, and limit the efficacy of prventitve treatment, so ive been told to only use analgesics to 10 days per month, therefore ive been so wary to take any. I didnt want to make anything any worse, I would be taking the abortive everysingle day.

I have just read through my consultants letter again and it does say about an abotive treatment, Im at the doctors tomorrow. Thanks Jewishmother, i didnt quite realise i could be on a long term preventive and a abotive. Im going to do research on the drug you said: Vicodin, and see what else i can have.

So do you take a preventitive and then alongside this when you get the major major migraine attacks you take the abortive? but beacuse our heads our painfull non stop how do you judge when to take the abortive, im worried ill be taking the abotive constantly! :-/

Thanks :-)


Gator4life: I cant begin to tell you all how much it means to know there are people out there who are going through what i am feeling. Good luck to you. It will only make us stronger and better people! :-)
My lovely

pain53
New Member


Date Joined Feb 2012
Total Posts : 4
   Posted 2/26/2012 12:21 PM (GMT -6)   
My Lovely,

I read your story and had a flashback to my 20's. It reminded me of my life. I had debilitating aura with my migraines and couldn't get my words out or make sense, the vision problems left me unable to care for my young children, I couldn't maintain my balance enough to stand...fortunately, the aura was just before the migraines and not 24/7. I too, had chronic migraine so I suffered much of the time. When I could finally, stand, see and speak, the vomiting would start. I empathize with what you are going through!

I assume you have had an MRI, EEG, etc. to make sure nothing else is causing your vision problems and vertigo. After working hard on making changes in my life, (diet, exercise, the stress in my life, the thoughts I had, and my emotions), I was able to regain my life. I no longer take daily preventative meds (and I was on a ton) and only have a migraine once a month or so. That's easily handled with some ice and Relpax. So it can be done, you WILL get your life back and it may take some changes and effort on your part, but you have the power to do that. :-) I truly believe that we all have more drugs in our brain than any drug company could ever make!

Believe!

KrisT
New Member


Date Joined Feb 2012
Total Posts : 2
   Posted 2/27/2012 1:09 PM (GMT -6)   
My Lovely,
 
I have had migraine headaches since I was 19yrs old. I have tried everything as well, but I will say this, i used to never sleep. I would take hours to fall asleep at night and once I did fall asleep I could wake up 20 times a night, therefor I kept headaches! I started taking Abien to sleep, if you take the med and lay straight down with in 15min, you should not have any trouble (i am no doctor :-)) But if you take it and stay awake that is a whole other story!!! lol! But since I started sleeping, I have less migraines! Also, my allergist told me about a trick that works for himself and some of his patients...anytime you get a migraine or you have an aura before the headache "freeze it out" Any slushy like drink (icee, frozen smoothy, or sonic slushy) you can make your own really fast (blender, ice, fruit ect...) drink the drink as fast as you can!!! The whole point is to give yourself a large brain freeze shocked and reset your vessels! Just try it, I had nothing to lose by trying it! It may work for you as well, Good luck!
 
PS. I hope it works! smilewinkgrin KrisT

My Lovely
Regular Member


Date Joined Feb 2012
Total Posts : 54
   Posted 2/27/2012 2:56 PM (GMT -6)   
well ive been to the doctors today and as per normal it was totally busy, running an hour late. Im stuck in my house day in day out and the tiny bit of time i get to talk to a profestional about my illness im rushed in and out! it makes me so angry and feel like im not worth anything. Dont get me wrong i know the doctors are so overworked, but please somebody give me a little bit of time and listen to me...rant over lol ;-/

Ive been reading up on magneseium and aparently for those of us that suffer with migraines, we are ment to be low in magnesium, so those of u out there try taking magnesium suppliments, ive ordered some today, its something to try that wont have any nasty side effects too.

info taken from link: 'Magnesium also helps with headaches and migraines due to its vascular muscle function and nerve relaxation. Migraine sufferers typically have lower blood magnesium levels than non-sufferers and recent research points to deficiency levels in over 50% of the population.


jewishmother: Hi, the consultant has given me a list of abortives to try. the 1st one ive been given today is sumatriptan, ive had this before, i had it in the very begining and it did nothing!!! but the doctor being the doctor wants me to try it again! I was trying to explain to the doc that my head is always painful, every second, therefore when do i take a this tablet? as i could just end up taking a them everyday! oh i dont know :-(. She just hasnt got a clue.

Pain53: Hi, Thanks for posting, its so lovely to hear a positive outcome of this. Just to know there is someone out there that has been through the tough times and come out smiling is brilliant to hear. Thanks for your words of wisdom and kindness, it really does mean an awful lot :-). It really did put a smile on my face to read you post, thanks :-)
ps. whats a EEG? I havent had one of these

KrisT: Hiya, thanks for posting :-) much appreciated, i shall def it ago, theres nothing i wont try. its funny you say about freezing though, as this really is the only thing that can bring my migraines back down to a level, I live with ice packs on my head, or if im out in a car the aircon on super cold on my head, to freeze it. thankyou :-)
My lovely

pain53
New Member


Date Joined Feb 2012
Total Posts : 4
   Posted 2/27/2012 5:09 PM (GMT -6)   
My Lovely,

Magnesium is very helpful for migraines. I take 900-1000 mg of magnesium taurate a day. I also have a spray magnesium (chloride) that I use as well. Magnesium oxide doesn't absorb very well, so it't not helpful. The only side effect is loose stools. (that's why I combine some of the spray, as it doesn't have any SE (not a pill and doesn't go through the GI tract). High doses of magnesium are not recommended if you kidney failure, very low heart rate, etc. It relaxes the cells. It's great, it's the relaxation mineral. :-)

An EEG is like an EKG of the heart, but looking a the brain, to rule out any seizure activity, etc. There is really no test for migraines, it's just that the other things it could be are ruled out, that's why the testing much of the time.

I would go up slowly on the magnesium and see how you tolerate it.

good luck!

My Lovely
Regular Member


Date Joined Feb 2012
Total Posts : 54
   Posted 3/1/2012 4:46 AM (GMT -6)   
Thanks Pain53 :-)
My lovely

Violet Rose
Regular Member


Date Joined May 2011
Total Posts : 48
   Posted 3/1/2012 5:06 AM (GMT -6)   
mylovely,
 
about the triptans, please don't give up after only trying one.  The reason I say this is that for years I was taking Naramig (naratriptan) over in the UK and it was very effective in aborting a migraine attack completely, it allowed me to live a pretty normal life and full blown migraine attacks were rare for me, I was using around 6 or 7 a month.  Just over a year ago I moved to italy and was told that Naramig is not available here, its an older triptan I believe.  The only triptans available to me here are Sumatriptan (Imigran in the UK) or Zolmitriptan (Zomig).
 
Neither are as effective for me as Naratriptan.  Sumatriptan will suppress my migraine for around 12 hours but it always comes back and has more intense side effects than naramig.  Zomig again will suppress the migraine for around 24 hours but it does come back....also Zomig makes me feel like a zombie for around 12 hours so I don't like taking that.
 
So basically I think everyone is different and should try the different types of triptans....one may work for you if you try them all :)
 
I am moving back to the UK at the end of this year so will be asking to go back on Naratriptan I've had more migraines this past 18 months than in the past 10 years simply because I have no reliable drug to abort the attack completely.
 
 
 
 

My Lovely
Regular Member


Date Joined Feb 2012
Total Posts : 54
   Posted 3/4/2012 4:34 PM (GMT -6)   
Violet Rose:

Hi, thanks for the advice, very much appreciated, anything is. Yeah my consultant has told me to go through trying all the triptans as all work differently, just as you have said :-). I was given the sumatriptan tablets on Monday; I only get 6 in packet, absolute joke!!!! But as the consultant said 'only allowed to take these abortive tablets 10 times a month'. The Tablets have almost all gone already and its only Sunday. I have 2 left, and this is me trying my hardest to limit taking them, literacy to when I’m having the super super bad attacks of pain. I actually had some relief from the 1st tablet i took :-), which only lasted 30 mins-hour ish though, but it took the intolerable pain back down to the normal pain, if that makes sense. So it took the nasty edge off the migraine. So that’s positive at least; but it did give me some slight side effects which i can put up with.


TOPIRAMATE:

Today I’ve dropped a dose on the Topiramate again; I’m now on nothing in the morning and 25mg at night time. I’ve been on Topiratmate now for 2 months now. Overall, I have found being on the lower dose has been more beneficial to me. I found being on 25mg am, 25 mg pm was the best option, as the higher dose gave me horrendous side effects, and I really to do horrendous!!! I got to the dose of 50mg am - 50mg pm before having to wean myself off it as I got such bad side effects. So anybody out there trying this drug, bare in mind maybe the lower dose is also a option. I was advised to up to dose weekly, my body did not take kindly to this at all, I’m no doctor but in my opinion I would advice a gradual increase, not weekly like I did.



BOTOX:

Has anybody out there had Botox injections and found them to work at all or even a little????
Any info, anything at all re Botox would be greatly appreciated please :-)

I’m coming off Topiratmate now so i can have Botox and im desperate to hear any positive thoughts on this, just anything :-)
ANYBODY FROM THE UK MANAGED TO GET BOTOX INJECTIONS DONE ON THE NHS??????????

Thankyou...any advice/anything greatly appreciated :-)
My lovely

My Lovely
Regular Member


Date Joined Feb 2012
Total Posts : 54
   Posted 3/7/2012 10:28 AM (GMT -6)   
ANYONE HAD BOTOX INJECTIONS THAT HAVE ACTUALLY WORKED???? ANYONE! :-)
My lovely - Chronic Daily Migraine with Visual Disturbance

metairieclark
New Member


Date Joined Feb 2012
Total Posts : 11
   Posted 3/11/2012 5:06 PM (GMT -6)   
just had my headaches cured last month with a cervical injection , seems that after a year and a half of constant headaches the doctor who was going to do an injection to cure a compressed nerve , looked at my mri and told me that he could cure my headaches , blah blah something about facet joints , i told him please do , and fifteen minutes later the headaches were gone and haven t come back , but i do still have occipital neuralgia , which is very evident now , thought that the neurologist was off , but turns out he was right on the money with that , actually , it turns out that all of the doctors were not really wrong , just wasn t seeing the right one , until now,  anyway it is good to be drug free , hope it lasts ,  but you need a mri and a guy who does spinal injections to read it , because apparently no one else even knows how to spot a faulty facet joint

metairieclark
New Member


Date Joined Feb 2012
Total Posts : 11
   Posted 3/11/2012 5:10 PM (GMT -6)   
oh btw there was akid who was hurt playing soccer who was on this site with symptoms similar to mine , if anyone remembers her name i would appreciate it , wanted to tell her what happened to me , thought it might help

My Lovely
Regular Member


Date Joined Feb 2012
Total Posts : 54
   Posted 3/14/2012 5:16 AM (GMT -6)   
Thanks for posting metairieclark, so happy to hear your having good days :-) thats amazing news. thanks for your info, greatly appreciated :-)

HI ALL,

JUST A NOTE TO EVERYONE WHO HAS TAKEN THE TIME AND EFFORT TO POST ON MY WALL AND REPLY YO MY POSTS, I CANT BEGIN TO TELL YOU HOW MUCH THIS HAS MADE ME FEEL BETTER, YOU'V ALL GIVEN ME HOPE! I FEEL BETTER WITHIN MYSELF SINCE POSTING ON HERE, I DONT FEEL SO ALONE OR LOST. KNOWING THERE ARE PEOPLE OUT THERE JUST LIKE ME, LIVING SUCH A CRAPPY EXISTANCE, IT HELPS TO KNOW IM NOT ON MY OWN.

ITS AMZING TO THINK ALL THESE WONDERFUL PEOPLE AROUND THE WORLD CAN BE SO KIND AND THOUGHTFUL AND USE YOUR TIME TO POST ON MY WALL.

JUST WANTED TO THANKYOU ALL :-)

TAKE CARE :-)
My lovely - Chronic Daily Migraine with Visual Disturbance

Violet Rose
Regular Member


Date Joined May 2011
Total Posts : 48
   Posted 3/14/2012 10:42 AM (GMT -6)   
/hugs smilewinkgrin

Specialk97
New Member


Date Joined Feb 2012
Total Posts : 8
   Posted 3/14/2012 4:49 PM (GMT -6)   
Oh my gosh, I can't believe what I am reading. I am going through the same thing. I have had a chronic daily headache since Dec 22 2011, 12 weeks tomorrow. I finially had Botox injections last week, one week ago tomorrow. It is improving slightly, but the doctor said it could take up to 2 weeks. The last time this happened to me in 2004, I tried the botox injections, and they worked. I had more this time as well as more injections 31 to be exact. I don't usually suffer from migraines, but every 3-7 years, I will get one that does not go away for at least 3-4 months and I get botox and it seems to help, but its not instant. I am not handling this very well either. I am very anxious, I cry all the time and I keep thinking that this is never going to go away, but I have been through this 3 times already, and they always do, its just hard trying to get through the 3-4 months of constant daily headache. My pain has come down from an 8-10 last month to a 1-3 this month. It is tolerable, but I don't want it to be. I want it gone. My reaction to this has been about the same as everyone else's, except that my husband thinks that I should just forget about it and go on with my life becaseu in his mind, "It's only a headache". He has no idea. this has really affected my life greatly. I still only do what i have to do and have no social or night life. The days are the hardest to get through and I don't always sleep well at night.
To those of you who have been in pain for a long time, Don't give up. I won't. I will spend every dime I have if I have to to get rid of this headache. Botox worked for me 7 years ago and it seems to be helping me this time. Get 2,3, or 4 opinions if you need to. There are also several great headache clinics around the country that can help. They are a team of doctors and nurses and this is all they do. Most are inpatient facilities, which are even better cause treating this as an outpatient is very difficult, not to mention, to much waitling. If the botox doesn't work for me this time, then I'm considering going to a headache clinic as an inpatient for other treatment options. These places have some of the best neurologists in the world and this is all they do. Heachaches 24/7. Keep your chins up everybody. It really sucks feeling bad for so long. I'm in the same boat.
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