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Discussion Starter · #1 ·
Hello everyone!

I havent been active in this forum for a while. I had a denial period :blush: - I thought if I dont read or think about the disease then I dont have it :lol:

Anyways - I have gotten so much help and understanding especially from here , so I am back again.

And one of the reasons is that in general I have had a long remission period - meaning my tests look good but I have constant headaches that last for weeks already. Noone can say the reason though. The neurologist said it cant be migraine because it didnt react to any migraine drugs.

Few days ago I called an ambulance because the pain got so bad. They did a tramadol shot that didnt help at all. Next day I found myself in the hospidal and got gallons of painkillers there. After few hours I felt painfree minutes the first time in weeks.
In the hospital they said it is typical stress-pain. I just need to change my lifestyle!!??? Yeah right! I just will quit my job and then jobless, moneyless I will have no stress at all :lol:

It took about two days and my headaches are back.
They travel all around my head. Sometimes the pain is in the front, then it is in the bback, then it is under the eyebrow, then it is in the centre of the head. smetimes it is sharp - then again it is numb and constant.
Anyways - no painkiller helps. And it has lasted for a week again. I wake up with the pain and go to sleep with it.

Doctors cannot anything to say. Sometimes I have given amitryptalline, then I have tried reccoxa, then xefo. I have had some vitamine injections.

Mainly the pain is not strong. It is light num pain - but it is constantly there. And the knowing that nothing helps drives me nuts.
Sometimes I even hope it to get very hard, then at least I can go to the hospital and get the strong painkillers again. Then I had few days of bliss.


I have a plan to go to psychotherapy - lets see if they have something to say. At least some stress management plan.

Anyways I just needed to vent and a little bit hope that maybe someone who has experienced something similar has some good advices to share?


Regards,

Ruta with her true "friend" pain.
 

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Ruta,
I just feel horrible for you because I suffer from "complex migraines", but they do go away with drugs. Could it be a sinus headache? Sinus headaches are NOT relieved with painkillers or migraine medicine. You ususally need a decongesatant and nasal steroid. If you have a sinus infection then you need anti-biotics.
If it is a tension headache then therapy will be great.
I hope you find out what type of headache it is, because that will help treat it.

Good Luck,
Becca
 

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Hi Ruta, I know exactly what you are going thru, and none of it is bearable or fun. The one question is, is it usually on one side? That would make it a migraine. And I must say that your dr. is full of it, cause wether or not a migraine is affected by drugs depends on the drug and the person. I began migrains at the age of nine yrs old, and am now, far too old to say,. I did not find a remedy that worked for me until about five yrs ago. The stories that I could tell you, that I had to live thru, you would not believe. If I get given permission from one of the moderators to tell you the name of what works for me, I will be glad to tell you. Otherwise, ice,dark room, noiseless, you know the drill. rest and get well.:worried:
 

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Discussion Starter · #4 ·
Hi!

Thanks for your words!

By the way I feel pretty dumb but I dont know what is sinus headache?

There is another thread here about sinus pain and I was reading it but still dont get what is it?
 

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Hi Ruta,

I'm sorry you are suffering so ((((((((((Ruta)))))))))

Halfpint you can of course name the preparation that helps you, just not a brand name or a link to a commercial website :)

Ruta sinus headaches are horrible and you will often have pressure above your eyes and also around your nose/cheeks when pressed.

Here's a link to lots of different headache types:
http://www.headacheaustralia.org.au/types_of_headache



I hope you work out what type yours really is and therefore get the appropriate treatment :hug:

love
Lily
 

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I know this sounds scary but ask your doc for a brain MRI or a cat-scan. I have had bad headaches all of my life. Sometimes they respond to meds and others times they don't. I do have a tumor on my pituitary gland which they think has something to do with some of my headaches.

I do also get headaches from caffeine withdrawal, being over heated, stressed out, missing a med, and or not sleeping well for a few days. All of these things and more could be causing your headaches. But I would get medical check out first and than do the other treatments.

Did these headaches come on suddenly. If they did then I would ask for a blood work up and the head scan at the very least.

By the way don't give up. If you don't get the answer the satisfies you from one doctor you know the drill go to another one.

Good Luck and try to stay positive
 

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Hello Ruta
Welcome back, i have been where you are, its horrible !!! sending you some hugs:grouphug2:
regards
june
 

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Hi Ruta, Lily said that I could tell you the product, but not the name of it.
I am sorry, but I don't know how to tell you what something is without naming it.
I am very sorry that you are in such pain. Keep posting and let me know how
your doing.
 

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Halfpint,
I think you can give the name, but don't post a link for a commercial website. We share the name of meds all the time.

Hugs,
Becca
 

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Hi Halfpint,

You can give the name (I think you mean feverfew? )

http://www.umm.edu/altmed/articles/feverfew-000243.htm

It should not be taken if you are on blood thinning medications and as with all alternative methods you should check to see if it is ok to take and won't interact with anything else you are on.

love
Lily
 

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Hello Ruta

I'm sorry about the headaches. :( I see you were on Fragmin at one stage and that you were complaining about headaches before. I suggest you get checked out for APS - the lupus anti coagulant and anti cardiolipin tests - just in case this potential blood clotting disorder is responsible for the headaches. Sometimes people with Raynauds have bad headaches too presumably something to do with the vaso constriction.

Dr Wallace says that they are managed with all the usual medications Fiorinal, Imitrex, anti inflammatories like Naprosyn and vaso constrictors such as ergot derivatives ( DHE-45,Migranal, Cafergot) for acute attacks, while beta blockers, tricyclic antidepressants or calcium channel blockers offer a degree of prevention and may sometimes be taken all the time.

" Lupus headache however is different from most migraines since patients might dramatically respond to a week's trial of 20-60 mgs daily Prednisone
Any lupus patient with a headache that does not respond to routine measures deserves a neurological workup"

(The Lupus Book 2cnd Edition pp104-105)

If you haven't had a lupus workup recently and if you aren't on any medicines I would think it is a good idea to see what might be going on with the lupus. Perhaps getting the lupus treated or more effective meds would help with the headaches.
Not to scare anybody but very bad headaches can be a symptom of serious conditions and should be checked out. A sudden excruciating headache is an ER situation.

All the best

Clare
 

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Lily, I want to thank you so much for helping me to figure out how to get thru that predictament. I wanted to help her so badly, but not to break any rules. Yes it was
(feverfew), and now that I know I can say that much, I will the next time.
Thank you again, you are always a great help.
 

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No problem halfpint :) :hug:

love
Lily
 

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Discussion Starter · #14 ·
Thank you all for your kind words.

And I will definately continue the examinations. In august I have my next appointment to schedule the next MRI. I will start my psychotherapy in July. I have scheduled special massage sessions and have an appointent in the Pain Center. (I dont know myself yet what kind of a place is that)

So I have probably done everything possible and continue to try every new thing. Few days ago my doc. gave me Relpax to try and miracle-miracle, it helped! I hope it wasnt just this one time.

And I continue my Milgamma shots to boost my energy and strenghten my organism as much as possible.

Anyways lets not give up!:thumbs:
Best wishes!
Ruta
 

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I've been on a lot of different meds for complex migraines tried feverfew and magnesium too. Not much works except for when they get so bad that I lose consciousness then Depakote helps.

Have you tried any of the anti-seizure meds like Depakote or a lot of folks have good luck with Topamax? Topamax put me in the hospital, didn't tolerate it well but my girlfriend with lupus does excellent on it and it got rid of her migraines.

Just a thougth. Hope you find something that works - I'm still searching.

Jen
 

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Hi,
I am going thru a bout of migranes now. I take imitrex(injections) and oxicodone and sinus meds. I normally take topamax in morning. Personnaly I don't think it works.

A sinus headache can turn into a migrane. A sinus infection can play havic on your headaches.

I had some extra antibyadics (always finish the antiboyodics..(sp). They are working a little. If improvement is not significant tommorow will call Neuro. I already know the answer...go to ER.

Elaine
 

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migraines

Hi I guess i am not the only one out here hurting....I have migraines and they hurt so bad...man women think that having babies is bad wow...i had 5 kids and my migraines are the worst..I feel like sometimes hurtin myself...I always go to the hospital and they give me three shots.....I had a catscan done when i was younger. I had migraines since i was 6.......now my son suffers from it he is 9. his nurologist said i give him my migraines......i feel so bad that he has to go throu this and me i just hope its nothin else...bless all with this terrible pain. Ana Paula
 

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Hi

I suffered from migraines for many years - started in teens - I am now 44. They trailed off a bit, then came back with vengence in my mid 30s. I was getting them almost weekly and they were lasting for 4 or 5 days. In between I was often what i called 'thick headed' - felt vaguely headachy and not quite with it.

Approx. 12 months ago I commenced half a dose of a beta blocker prescribed by a neurologist following a normal brain scan. He believed I was getting migraine and although I was sceptical because the pain was different to that of my teen years, I complied with the medication and have not had more than 2 in 12 months.

Interestinlgy, a lot of the pins and needles I got in my fingers was associated with the migraines. At the time i was not aware migraines could cause this.

PS I do have APS, but baby aspirin alone does not prevent my migraines.

Not everybody should take beta blockers, and they do not 'cure' migraine or make one go away. So they are useless as a pain killer. If they work for you they work by preventing them. This means you have to take the dose every single day.

I wish everybody could take them - I really do take a tiny dose - the minimum snapped in half. And I dearly wish they worked for everybody.

I cannot tell you what a huge difference it has made to my life. The beta blocker i take is Nadolol (40mg once a day).

I stay off caffeine now and only drink decaffeinated tea and coffee because i do get headaches caused by caffeine withdrawal. These are nothing like the migraines though.
Even so, I am a caffeine free zone now. I do over indulge in too many proper cups of tea / coffee (visiting friends, etc.) I start to get headachy.

I never understand the whole caffeine thing becasue so many migraine tablets include quite a healthy dose of caffeine!

Anyway, I am drifting into a novel as always.

Good luck - I do hope you get some relief soon.
 

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This seems to be a problem with me, at this time. I have had MRI after MRI and have been told I have TONSILAR EPTOPICA... weird name I know? If anyone else knows what this might all intail let me know...
 

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I had chronic headaches/migraines before I started the drug Imuran(AZA). Then I haven't had any at all while on this medicine until now(after being on the med for apprx 6mo's) My headaches are starting in again, every morning I wake up with a headache, but so far Ibuprofen takes care of it. But I'm still a little concerned about these h/a's I've not had an MRI or CT.:worried:
 
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