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

Specialk97:

Hi there, thanks for posting, awww another one of us poor people suffering with this awful illness!!!!!! ooohhh brilliant someone who has had botox-and with a positive outcome. thats great it that they worked at the time , that gives me some hope .

Im so sorry that your migraines keep coming back to you, it must be so incredibily frustrating to think you have got rid of them then the little terrors make there way back into your life! Do you know why yours started? for me it was contraception, too many in a short space of time, my head just couldn’t handle the change so quickly.

While you have botox are you allowed to still take medication? as ive been told i cant, that ive got to come off the meds im on now (topiramate) then i can have the botox.

Ive had a constant daily migraine with visual disturbance/vertigo for a year now, and i cant tell you how crazy i feel i am going! I know exactly what you mean, i am incredibly anxious and i feel im getting worse.

Over the past month, just writing on here has helped me cope so much better, just chatting on this post and listening to what people are saying who are in the same situation. I was also getting very very low, crying at least several times a day, but now its not so much, still weekly, but is better. I was feeling no one around me understood what and how bloody hard this is to cope with, that our whole lifes have been turned upside down! and just how hard that is the adjust to.

What ive done since coming on this forum is, ive emailed my friends, close family and partner, descriptions from the internet which medically describes chronic daily migraine, vertigo, visual disturbance, all my problems, all info explaining how difficult it is to live with and what has actually happened to me medically, as i found that everyone was just relating my migraines to the normal migraines people get, and its not just one in a blue moon, its CONSTANT! DAILY! NEVER EVER GOES! i wanted to get this point across, heard, and emailing is such a good way to do this, they can sit and read in there own time. I cant begin to tell you how much this has helped people to understand what im going through, I also gave them a copy to what i wrote in the post in the very beginning here, explaining how i feel. As i know too well what illness can do to someone if you dont have support.
My mum is very very ill, suffers with lots of different illness', and im her only support, and she finds that so hard, her family dont help/support her and i think its just awful, her friends dont understand. I think the sooner you help your close family and friends around you understand the better. It will be easier on you in the long run.
I also came across this on the fibro healingwell page, its amazing to describe for me how my life works, how i have to pace myself, have a read, its so good, its good for most illness’, ive also emailed this to people and this seems to get a very good response. Me and my friends now refer to my bad days as how many spoons ive lost: http://www.butyoudontlooksick.com/navigation/BYDLS-TheSpoonTheory.pdf
Doing all of the above has given a much better understanding to all those i love around me, and has helped me to be supported by them. It really has helped and lifted my depression, as my friends and family are now much more supportive as its helped them understand.

Maybe do above for your husband?


where do you live? just wondered if you were in the uk getting botox?

TAKE CARE ALL x

Thanks for posting. I am not taking any meds right now since I am also afraid of rebound headaches. They don't help anyway, so what is the point. My doctor had me on Pamelor for awhile, but it did not help and was causing side effects, so I stopped it. This is very frustrating to have. I'm on day 7 of botox still waiting for it to work. It seems to be helpIng a little. The longer this goes on, the more scared I get. After reading all these posts, the think I'm going to be stuck with this for years and alter my whole life.

Thanks for posting again. I hope things change for your soon. I am at 12 weeks now and I've never had one of these headaches last longer than 3-4 months, with or without Botox. It is hard to say whether or not it is working yet. I thought it was a few days ago, now I just don't know. I was having some relief and the headache was going in and out, but now it is back as a constant. I think you said that you live in the UK. I don't know what your situation is, but there are many great headache clinics in the US. The best one is in Michigan and another good one is in Chicago. They are inpatient clinics so you have the best doctors and a team of doctors to work and this is all they do, 24/7. Thye are experts. Most of them are at university hospitals.  Treating this as an outpatient really sucks. Too much trial and error and waiting. Waiting for what. more pain everyday. You can get online and research this and find one. It is your best option since you have been suffering with this for so long. I never had this problem until I had an epidural injection in my back 12 years ago that caused a CSF leak that took 3-4 months to heal. I think that event changed something in my brain and now I have these headache "events' that come on every few years and then run there course and usually go, but again it's "hurry up and wait". It's very frustrating.

I really hope and pray that this Botox works this time. I'm on day 7 and today seems worse than the last 2 days. I'm getting pretty scared. I don't know where I go from here. I'm very anxious and frustrated, it is so easy to feel like this is never going to go away and that your life is forever changed. I have had this twice before, and it has always followed the same pattern, 3-4 months and,last time Botox worked so I can only hope this time it follows the same pattern again. All we can do is have faith and look to God to ease our suffering. It is very hard to do sometimes I know.

hello ladies, well i think you are ladies, lol
i am joining you in this headache bandwagon
it is an awful ride isn't it
my story is continuous, severe, bilateral, temporal headaches, now going on twelve years
the pain is awful and is a daily struggle
i have tried so many meds, seen tons of doctors, injections, different forms of treatment and nothing has worked for me
i keep ice on my head all the time
you know, there are so many of us suffering with terrible headaches, it's hard to believe
it is not an easy battle that is for sure
i also tried botox with no effect either
sure hope it works in your case
have you looked into an occipital nerve stimulator
i have been reading some positive outcomes with this surgery
so i am looking into this option for myself
i am in canada so i am now just awaiting a call from medtronics to find a contact here in ontario, i sure this is an option for me

i wish you all a great day despite all your pain

Suzane

Specialk97: how is the botox going?

Specialk97: hi, sorry for the late reply ive been trying not to look at the computter very often as it is def making me so much worse.
Well on a possitive note, it seems like this guy knows what he is talking about, and he thinks he can help, so thats good, also good that he thinks he knows what it is. Hopefully thats a relief for you. As when i didnt have a diagnosis it was awful. Just to know what it was helped me.

I havent heard of this condition before, benign intracranial hypertension. I really do hope the Diamox works for you asap.

Ive actually had a good past few days only having 3 ish migraines a day which is unheard of for me! its very strange, our weather has been absolutly gorgeous here in the uk, its been boiling (not usual for this time of year) so ive been sitting in the sun all day everyday, dont know if this is helping me, very odd. Im also not on any tabs, and im eating super healthy foods. So it may seem i am better without any tabs at all. But that past week i seem to be getting a horrible sick feeling all the time, not in my belly, but in my throat, ive been taking anti sickness tablets called Domperidone, they dont seem to do anything. I have never had the sickness with my migraines, I just hope its not that. It seems this good spell has only lasted for the 3 days though, but it was sooooooooooo lovely to have good days, i havent had that in so long

My next set of tabs to try are called Zolmitriptan.

Take care

Hi all

(update on botox)

Well after my posts a few months ago, i have now had my botox injections, 33 injections all over head and neck.

It has now been 1 month since my treatment, the 1st 3 weeks, there was no difference, if anything a little worse, pain in different places of head (my consultant warned me of this) i have also been getting very sore/achy jaw every time i eat. the full effect of botox is week 3 onwards.

I have 2-3 migraines a day normally, i dont go a day without pain or distorted vision (vertigo) everyday.

And i have some great news! botox is working for me!!!!! dont get me wrong its not cured me totoaly, i still have daily problems. It has almost dulled the pain. My migraines are less painful and less intence, i can still feel like im having a migraine, but its a different type of pain than before, its more copeable not as strong. Its amazing news. I have tried several tablets as listed in my previous listings-non of which worked.

No nasty sideeffects is great, as im not taking any other tablets.

Its said that the more i have botox the better it may work next time too. Botox has to be repeated every 3 months.

For me this tiny bit of difference in my migraines is immence, its not completely got rid of my migraines but its hope for me, finally something possitive for me to focus on.

I just wanted to let you all know about my success, keep stong, and try botox!

@ My Lovely have you tried or has the doctor suggested beta blockers as a solution i know many people who find this very good cheers will be back to see how you are doing good luck don't stress to much and make sure you computer monitor is set properly to stop glare which can make your headaches worse ........

MigraSpray is not available through chain retail stores or outlets.

How long after you eat something that might be a trigger that you get the headache hours days weeks i know its a strange question but i cant figure it out ?

Have you kept a headache journal including the weather as this can be a trigger for some (A major trigger for me), also have you talked with your doctor about the possibility that you could have some anxiety about your migraines and that that might be causing them to come back. I have Migraines for the past 20+ years and have been on all the prevenative meds and amd now in the proccess of going to a headache clinic in my area but that's not til Sept. and in the short term I am looking into a pain clinic to help get me through till the appointment. As weather is my major trigger the weather here in the NE has been the worst for stability in years and due to the migraines have missed about 2 months of work during the last year due to them. I tried the Botox and yes it did help alittle but as you mentioned you do have to keep getting them (I'm very happy they are helping you). I'm not sure if you migraines are triggered by flourecent lights and if so you may consider switching those energy saving bulbs out to the LED ones you can get at the hardware store as I have done that due to those light being a trigger for me as well. If you wera eye glasses you may want to talk with the eye place if you use computers alot as they can put a tint on the glasses (I work with computers and my eye doc suggested that I shold get the tint as I work with computers all day) I'm not a doctor or medical person and these are just my suggestions, I wish you luck with getting you migraines under control, and as for what others think Over my 50 years of exsistance I've learned that what others think are just their problem and not something I'm concerbned with. I do wish they would come out with a machine that would allow us to share our pain with others so they can see what we do have to live with.
Good Luck
Scotty