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Posted 12/28/2007 11:15 PM (GMT 0)
hi im a new member from the uk and have had migraines all my life since 2002 have had different headaches and at first was convinced i had a brain tumor that painful, ive seen so many doctors and have been on the waiting to see a top specilaist in london however had to wait 17 months for this appt which was back in july and im going into london hospital in 2 weeks for tests. i have no faith in them finding a cure any more.  lately the pain has been more facial it al over the bridge of my nose and it feels like someone is trying to pull my eyes apart, im a midwife and love my job but boy its getting really hard to face work every day when in so much pain.  ive been really good innot taking any pain killers which contain codiene as i know this can make you have rebound headaches.  i am totally convinced that i have something more serious going on and they havent diagnosed me properly, my trouble is i work in the health field and meet many doctors who often fail to treat people correctly.

the last two weeks have been awful ive spent 2 weeks in bed crying with the pain and fearing suffering like this for another n40years, i know this sounds awful but lately ive just wanted to take a load of tablets to end it all, this is how depressed it gets you ive searched the internet for hours trying to find some hope ive even offered to travel to the other side of the world if there was a miracle cure.

my husband finds this so difficult to deal with, but i cant remember the last time i had no pain and was happy.

has anyone out there experienced similar pain, as ive seen an ent specialist but the pain is awful now in my face, around eyes and bridge of nose.  ive been offered a chance of a life time ive been offered a job in queensland OZ, something ive always dreamed of but now im worried as there seems to be no end to this misery and it would mean searching again for help in another country.

Posted 12/29/2007 3:58 AM (GMT 0)
Hi I know exactly what your going through I don't remember the last time I didn't have a headache. I also get different types of headaches but, I always have one or more. It's been that way since 1995. As for the pain around your eyebrows and nose, I describe it like getting punched right in the face. I saw an ear, nose and throat specialist because my nose would also get plugged up for no apparent reason they did a CT scan and found nothing wrong so the DR concluded I was getting air trapped in my sinuses which created pressure. He put me on pseudophedrine tablets 4 of them daily and it definately helps me breathe and takes away quite a bit of the pain. When I first started taking the medication 1 tablet at once was too much and gave me an excrutiating tension headache around my hairline so I had to break the pills up and slowly get to the level he prescribed. As for some of the other headaches, I was diagnosed with cluster migraines, ApL, and Lupus. They tried a whole lot of heavy doses of anti-depressants like elavil, with no success. I havn't found anything that really works, but when I get a migraine that puts me in bed and I'm about to puke I take maxalt. Other than that I just try to make it through the day I've been taking oxycontin or oxycodone for about 7 yrs that's not what I wanted but, I can't function without it, the pain is to bad. Even after I take it, it dosen't take the pain away it just makes it tolerable. I would love to talk with you more, I to have seen a lot of doctors at UCSF, Stanford, and much much more. So please write back.
Posted 12/29/2007 9:57 PM (GMT 0)
I know this is probably a dumb question for you both, because it seems like you two have tried everything in the world to get rid of your horrific headaches... but have you tried preventatives like Topamax? Or Imitrex for when you get the migraines? I know that with the sinus headaches, I used to get those a LOT more before Topamax. I remember even having allergies a lot worse last year before starting this medication. I don't know if its a coincidence or if I'm just growing out of them being in a city rather than a little farm town and getting used to "a little" cleaner air.

I used to get 4 headaches a week and I'm sure it wouldn't hurt if you "can't remember the last time you didn't have pain" OUCH! There for a while I couldn't remember the last time I had a headache. But now I think my body has gotten used to my low dosage of Topamax and its ready to bump up 25mg's. Its a good med for me, some people like it, others don't.

If you haven't heard of it, read up... Good luck and I feel for you guys :)

Much Love
Posted 12/31/2007 8:18 AM (GMT 0)
Charliegirl,

First of all, please know that you are not alone.  Second, I hate to tell you this, but you might not have anything seriously wrong.  I have had migraines for 30 years and I used to wish I had a brain tumor.  No such luck, just migraines, which are now complicated by herniated discs in my neck.  That said, I know of several people with migraine that did end up having an aneurysm or tumor.

I have daily headaches, and once a week or so I get a disabling headache.  Despite this, I have raised 2 children and worked all these years.  I have tried so many different things.  A few things that have helped:

1) Taking the birth control pill Yasmin (now called Yaz) continuously so I do not have a period.  This can be done safely for years and helps even out the hormones.  All other BCPs make migraines worse.

2) Massage therapy helps - I have a lot of neck/shoulder pain.

3) I take 3 meds, Claritin (over-the counter here) - it is the newer antihistimine drug.  I have been told NOT to take decongestants, so I am not sure about the pseudoephdrine your dr prescribed.

Singulair - for asthma, but it helps migraines also.  Norvasc - for blood pressure normally, but it was prescribed for the migraines and if I run out of it, they get worse.

4) The triptans work for me about 75% of the time as an abortive, but lately, they are not working so well

Finally, I think you should consider opiates.  My doc explained that they should be taken daily, not just when you get a migraine, this prevents forming an addiction.

Even after all this, I had a really bad day today and have been nearly suicidal.  I have an appt with a new doctor next week, like you, I don't expect much.

Good luck, and take care of yourself.

Posted 12/31/2007 3:17 PM (GMT 0)
Hi Charliegirl,

Sorry I have not seen this before. I really feel for you with this! You say you are going to be seeing a specialist in London - is that at the National Hospital in Queens Square? If it is you may be seeing my specialist!!! And if that is the case you will not be able to get better treatment anywhere else in the country!!!!

Please feel free to email me Charliegirl, hang in there, I hope and pray that 2008 will be the year you get your headaches sorted out!!!

take care

Ann
Posted 12/31/2007 9:28 PM (GMT 0)
Mandaynn210,

You said that you take Topamax and like the results. Do you think that this has helped with the daily nagging headache as well? Or did you have those. After the elimination diet and high levels of magnesium and omega 3's, my migraines have gone down SIGNIFICANTLY! I used to get 2 a week, lasting 3-4 days, which means I had migraines everyday. Now I get one maybe twice a month, lasting no more than 24 hours. However, I still have that daily background nagging headache, like something is in my head. I have had a prescription for Topamax in my purse for two weeks, but am not sure about risking side effects, trials, etc... What do you think?

Thanks,

Mother2

Posted 1/2/2008 3:52 PM (GMT 0)
mother2,

Well, I still get the nagging headaches. But I do believe it is brought on by things like the diet, caffiene, lack of excercise, alcohol, being around cigarette smoke.... etc. I could go on and on but really my migraines have gone down significantly. Now, the only thing I have done about mine is Topamax and change in diet, like avoiding (mostly) foods that can trigger my migraines. So you say magnesium helps and high levels of omega 3's? So I should eat more fish OR would you suggest that taking both as supplements would be sufficient?

Anyway, I'm getting off the subject of you here... Topamax has helped a lot, however not taken away all the migraines completely. But that is MY personal mistakes by allowing myself to be subject to my triggers. Topamax can help out a lot, but then again, sometimes I feel like it is a lost cause. That has only been lately because, and this is a lot of people's opinion, that I've been on it just over a year and my body has gotten used to the drug itself and needs more.

Well, yeah, that could work, and probably will... but I don't want to pay more! And I don't want to go through all those side effects again! I'm with you. I'm about to go see my doc again and ask whats right for me. Maybe trying the magnesium and omega 3 supplements would be a good idea for me as well.... hmm
Posted 1/2/2008 3:54 PM (GMT 0)
I meant to add to that... basically, there's no harm in trying. If ANYTHING is an issue to you since Topamax is extreme in many areas (money, side effects) weigh your pros and cons. I thought about it for a few months before actually doing it!
Posted 1/2/2008 10:32 PM (GMT 0)

hi annuk

thanks for taking time to reply back to me, yes the quy i am seeing in queen square is from the national insitute of nurology.  going into queen square on 14th jan for one week, for lots of tests including sleep study MRI and unfortunately Lumbar puncture, but must have these done, Ive always said i would far rather someone cure my headaches than win the lottery, I just want my life back.

Ive worked so hard to get where i am, married too young with no qualifications then divorced as a single parent with a huge ambition to become a midwife so dispite weekly migraines went back to full time study for 5 years with no income stayed up most nights following heavy shifts on maternity wards to complete assignment after assignment.

Was indeed very proud to have gained a 1st degree, but within a year of qualifiing began having these awful daily headaches not migraines, i do get them still but not as often, these daily headaches are far worst especially when i get the severe pain in my face and eyes, I do still manage to go to work most days but its hard.  Nobody is able to tell me why all of a sudden i developed these new headaches whats awful is I qualified had a good income new car trips to florida, OZ and New Zealand No STRESS and bang the demon appeared.  I really can not remember the last time I felt happy my kids hate the fact that they see me more in bed with a bad head than any where else.

Ive even looked into a clinic in NEW JERSEY USA which claims to cure 95% of people with headaches and facial pain but I'm sure I would probably have to re mortgage my house to get this treatment and theres always the fact that this claim is a con to get money.

what has your experience of Queen Square been cus Ive heard great things just sad its taken 2 years to get seen.

tracy

Posted 1/2/2008 10:40 PM (GMT 0)
Hi Tracy,

Queens Square is the best place you can go - who is your Consultant? If it is Dr Matharu you are in the best hands in the world!!! There is nothing worth knowing about headache that he doesn't know!!! All the guys in the Headaches Group a brilliant whoever you see.

Wish you all the best for your week in QS - gonna have one myself in a couple of months! They have done wonders for me already - I have finally been dignosed after 30 years with a very rare headache!!!! Apparently I have migraine too as wel as Hemicrania Continua!!!

take care

Ann
Posted 1/3/2008 2:12 AM (GMT 0)

Tracy-

I'm sorry to hear about your pain.  Chronic daily headaches are horrible.  I've had really bad sinus infections for a large part of my life, and the part of your face your are describing pain in seems to coincide with location of the sinuses.  The ENT you went to didn't find anything wrong with your sinuses, or scar tissue in your sinuses or nose (this can cause frequent pressure as well)? I've never used it myself, but on other migraine forums migraineurs with sinus pressure and frequent allergies had rave reviews for the "neti pot", which is a pot that helps rinse out your sinuses and reduces sinus pressure.  Apparently you can buy it online, or at your local health food store (here, I don't know if they are common in the UK as well).

I sounds like you have an appointment with an EXCELLENT specialist! YAY! Hopefully, like many of us, you will see a dramatic improvement in the information, care, and advice given by a specialist vs. all of the other doctors seen for migraines.  Wishing the best for you!

Sarah

P.S.  ANN - Can you please send me information on Hemicrania Continua? Thanks!

Posted 1/3/2008 2:20 AM (GMT 0)

Triedeverything said...
Charliegirl,

First of all, please know that you are not alone.  Second, I hate to tell you this, but you might not have anything seriously wrong.  I have had migraines for 30 years and I used to wish I had a brain tumor.  No such luck, just migraines, which are now complicated by herniated discs in my neck.  That said, I know of several people with migraine that did end up having an aneurysm or tumor.

I have daily headaches, and once a week or so I get a disabling headache.  Despite this, I have raised 2 children and worked all these years.  I have tried so many different things.  A few things that have helped:

1) Taking the birth control pill Yasmin (now called Yaz) continuously so I do not have a period.  This can be done safely for years and helps even out the hormones.  All other BCPs make migraines worse.

2) Massage therapy helps - I have a lot of neck/shoulder pain.

3) I take 3 meds, Claritin (over-the counter here) - it is the newer antihistimine drug.  I have been told NOT to take decongestants, so I am not sure about the pseudoephdrine your dr prescribed.

Singulair - for asthma, but it helps migraines also.  Norvasc - for blood pressure normally, but it was prescribed for the migraines and if I run out of it, they get worse.

4) The triptans work for me about 75% of the time as an abortive, but lately, they are not working so well

Finally, I think you should consider opiates.  My doc explained that they should be taken daily, not just when you get a migraine, this prevents forming an addiction.

Even after all this, I had a really bad day today and have been nearly suicidal.  I have an appt with a new doctor next week, like you, I don't expect much.

Good luck, and take care of yourself.

Sorry for the double post.  Triedeverything, I think birthcontrol must be a very individualized thing for both women, and women with migraines. 

Yasmin (Yaz) has a higher level of hormones than some other bc pills on the market, and the higher level of hormones can cause migraine in some women (Yaz gave me migraines).  I get the best results on low dose bc pills.  Unfortunately, it can be a trial and error process.  If you go to a neurologist specializing in migraines, they are often willing to talk with your gyn about what might work best for you (including, as triedeverything mentioned, skipping the placebo pills to reduce the number of periods you get). If you're not on a bc pill, the best bet may be to stay off of it and talk with your specialist and gyn about other bc options. Just my two cents...from someone who started to get very frequent migraines after starting the birth control pill sad .

~Sarah

Posted 1/3/2008 3:24 AM (GMT 0)
Mandalynn210,

Thanks for your reply regarding the Topamax. As far as the omega 3's and magnesium, I take three omega's in the morning and three at night. My chiropractor had recommended this dose for imflammation of the body. Look up the benefits if you get the chance. Omega's are great for lots of things!!!!! Nerves, Heart, Eyes, everything!  I eat fish as well, but you should definitely supplament to get enough. This can help with any neck, shoulder pain, or any inflammation that a headache might cause. I have had neck pain for years, and the omega's really help with sleep, especially. The magnesium is a natural calcium channel blocker. ( which has a lot to do with migraine) The ER has a magnesium drip for migraine patients if you don't want narcotics. Anyway, I found a book, called "The Magnesium Solution for Migraine Sufferers" It's great. I take 800 mg a day, which is 400 more than the recommended amount (doctor approved of course) although, some doctors don't know much about magnesium so take their advise with a grain of salt. I have noticed a huge difference. At first I was unsure if it was the diet change or the magnesium that was helping, but as a matter of fact, I ran out of magnesium a couple days ago, and have been real headachy today, different than the daily nagging headaches. I'll fill you in on that as I go along. Something I've learned from lots of research is when you are trying supplaments, if you don't notice a difference in 30 days, it's either not going to work for you or you need to switch brands, which there are a million out there :) I use a nice one that I get at the chiro's office, and noticed that it works better than the cheap stuff at Albertson's. Also if you get the fish burps from the omega's, store them in the freezer. Works great. Good Luck to you. Here's to a healthier, headache free 2008!

Mother2

 

Posted 1/11/2008 12:49 PM (GMT 0)
HI ANN  JUST WONDERING WHEN YOU WENT TO LONDON ,QUEENS SQ WHAT TYPE OF HEALTH INSURANCE COVERED THIS? THEN YOU HAVE TO FLY BACK AND FORTH FOR FOLLOW-UPS. WHAT IS SO DIFFERENT WITH THIS HEADACHE CENTER COMPARED TO THE ONES IN NEWYORK,OR PHILA PA. WHAT MEDS DID THEY GIVE YOU THAT WERE DIFFERENT THAN THE MEDS GIVEN TO PATIENTS WHO GO TO PHILA OR N.Y.                                      

                                                                 ASHLEY

                                                                  GIVEN UP

Posted 1/11/2008 12:56 PM (GMT 0)

hi charliegirl 65

i have been all over myself for cervical headaches. what health insurance co. covers going to london for treatment? how did you find out about this place. how does someone afford going there? please let me know                                                

                                                                           ashley

                                                                           givenup

---

Posted 1/11/2008 6:28 PM (GMT 0)

givenup said...
HI ANN  JUST WONDERING WHEN YOU WENT TO LONDON ,QUEENS SQ WHAT TYPE OF HEALTH INSURANCE COVERED THIS? THEN YOU HAVE TO FLY BACK AND FORTH FOR FOLLOW-UPS. WHAT IS SO DIFFERENT WITH THIS HEADACHE CENTER COMPARED TO THE ONES IN NEWYORK,OR PHILA PA. WHAT MEDS DID THEY GIVE YOU THAT WERE DIFFERENT THAN THE MEDS GIVEN TO PATIENTS WHO GO TO PHILA OR N.Y.                                      

                                                                 ASHLEY

                                                                  GIVEN UP

Hi Ashley,

It is difficult for me to comment about this as I live in the UK not too far from London!!  I should imagine Queens Square is not that much different to Headache Centres in the USA.  However, my original Consultant has now moved to the USA to set up a centre of excellence for Headache with his ways of doing things - which I might add is what got me finally diagnosed!!!!

I am unsure exactly where this is but I could find out for you if you wish!  Probably best to email me about this!

take care

Ann

Posted 1/11/2008 7:23 PM (GMT 0)

hi ashley

like many people who suffer i spent many hours on the net researching different specialists and i found ouchuk.org very good forum after reading many posts regarding queens square gor my gp to refer me which took 17 months but found out after if id joined ouch which i have now they get you a quick appointment within a month.

I too like Ann am from the UK. so its a NHS hospital so free for us Brits but to be honest i saw info regarding a new jersey clinic claiming to cure 90 per cent of headaches so i was willing to do that.  Im going into Queen square on monday for 5 days for investigations.  looking forward to it as finally found someone who cares.

good luck

tracy

Posted 1/13/2008 7:09 PM (GMT 0)

dear ann  yes if you can let me know where your doctor went to in the U.S.

                                                                         thanks  ashley

Posted 1/13/2008 7:13 PM (GMT 0)

dear charliegirl65    what is the name of the headache clinic in n.j. who clims to cure 90 percent of headaches

                                                                             ashley

Posted 1/15/2008 5:18 PM (GMT 0)
Mother2... Thanks for your reply

I am definitely going to try magnesium and omega 3's now!!! Sounds really good... I do need to eat more fish as it is, so I guess taking a supplement isn't so bad either. Guess I need to just get on a good daily vitamin helping that suits me. Calcium, magnesium, omega 3, E, C... ohhh maybe a multi. Definitely a good idea!
Posted 1/17/2008 8:50 PM (GMT 0)

hi ann  i would like you to find out if you can where the doctor you saw in the uk went to here in the us   

                                                             thanks  ashley

Posted 1/17/2008 8:53 PM (GMT 0)

to charliegirl    you said that you came across a headache clinic in n.j who claims to cure 90 percent of headaches. who was it

                                                              given up

                                                              ashley

Posted 1/17/2008 9:25 PM (GMT 0)
Hi Ashley,

The consultants name is Professor Goadsby, but I am waiting to hear where he has gone, I will get back to you as soon as I can.

take care

Ann
Posted 1/17/2008 9:57 PM (GMT 0)
Hi again Ashley,

Where are you? east coast or west coast?


take care

Ann
Posted 1/17/2008 11:09 PM (GMT 0)
hi ann  its ashley  i live on the east coast in lyndhurst new,jersey

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