Diagnosis: Just been diagnosed with... - National Migraine...

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babs1234 profile image
21 Replies

Just been diagnosed with Hemicrania Continua migraine. Got to go into hospital for the day for bloods and nerve block injections in the back of the head ...has anyone had these injections?

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babs1234
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21 Replies
Cally01 profile image
Cally01

NO WAY !! That's my diagnosis. Yeah i had occipital nerve blocks twice Babs.

I also had DHE treatment.

babs1234 profile image
babs1234 in reply to Cally01

What's DHE treatment and did the injections work? I'm still convinced its cluster headaches but he's the professional x

Cally01 profile image
Cally01 in reply to babs1234

DHE is hospital for 5 days, every 7hrs day/night they take you to intensive care, hook you up to a heart machine & an IV and push liquids through you for an hr. It's suppose to wipe your body of all meds and basically restart you. It is supposed to wipe out your migraine cycle and get it all back under control. I had constant headache 24/7 which built up throughout the day to multiple daily migraines.

I had one migraine throughout the 5 days so i thought it was working but it all came straight back again after 24hrs of the treatment stopping.

babs1234 profile image
babs1234 in reply to Cally01

Did you have any luck with the nerve blacks? X

Cally01 profile image
Cally01 in reply to babs1234

Nope!! Didn't do anything at all. Neurologist said i was an anomaly!! That's what made me pursue my jaw because i jumped through all the migraine hoops / treatments and nothing touched the frequency or intensity of my headaches/migraines. Xx

babs1234 profile image
babs1234 in reply to Cally01

Damn 😫 X

Cally01 profile image
Cally01 in reply to babs1234

You know, it just might work for you because it might be cluster or hemacrania continua remember mine was highlighted to be the jaw so misdiagnosed 😆.

If they have you correct it should give you results 😆

Don't give up hope xx

babs1234 profile image
babs1234 in reply to Cally01

It's hard now t to after years of trying different meds/supplements/therapies spending hundreds£££££ and getting nowhere. Here's hoping xxx

Cally01 profile image
Cally01 in reply to babs1234

Yip i know 😔 feel like the bank of migraine sometimes. I'm just waiting on my appt for botox into my jaw muscles ( paying for it myself AGAIN ) it's just a nightmare. Just want a "normal" life !! Whatever that is!!

Good luck 😆 let me know how you get on xx

MIPAINGRAIN profile image
MIPAINGRAIN

NOW LOOK… THESE NEUROLOGISTS OR MIGRAINE SPECIALISTS DON'T HAVE A CLUE - IT IF WEREN'T FOR YOU AS THEIR EXPERIMENT, THEY WOULD CONTINUE TO WALK A TIGHT ROPE WITHOUT A CURE.

DHE IS HORRIFIC AND IS NOT A CURE! IT WILL COST YOU UPWARDS OF 40K (YES 40 THOUSAND DOLLARS) OF WHICH YOUR INSURANCE WILL NOT COVER. I DID IT TWICE AND ALMOST DIED.

BOTOX IS PURIFIED POSION TAKEN FROM A COW. AGAIN YOU ARE THE HUMAN TEST TO SEE IF IT WORKS. NO TELLING WHAT BOTOX WILL DO TO YOU IN 20, 30, 40, 50 PLUS YEARS FROM NOW.

WHEN YOU ASK YOUR DOCTOR, HE OR SHE WILL GET VERY NERVOUS AND DANCE AROUND THESE QUESTIONS. WHY? WHY BECAUSE THERE IS NO KNOWN CURE. THEY WILL BE OUT OF BUSINESS.

MIGRAINE SPECIALISTS! ARE NOTHING MORE THAN A REGULAR M.D. WHO HAS TAKEN ADDITIONAL CLASSES IN MIGRAINE TREATMENT. DON'T GO THERE.

ONLY GO TO A NEUROLOGIST WHO ONLY DEALS WITH MIGRAINE CARE EXCLUSIVELY. BUT INTERVIEW HIM OR HER. ASK QUESTIONS, ASK THEIR FORMER PATIENTS. MAKE SURE THEY ARE HUMAN AND COMPASSIONATE. MOST ARE NOT. MANY WILL BLAME YOU FOR HAVING A MONSTER MIGRAINE EVERY DAY. THEY WON'T BELIEVE YOU. THEY WILL YELL AT YOU, CALL YOU NAMES, PUT YOU DOWN, SHOULD YOU REPORT THAT THEIR IMITREX, CAFOGOT, BOTOX, DHE IS NOT WORKING. THEY WILL TELL YOU TO SEE A SHRINK …BECAUSE IT IS YOUR OWN "FAULT". SEE WHAT I MEAN.

THEY WILL NEVER EVER GIVE YOU MEDICINE WHICH IS ALREADY OUT THERE AND HAS BEEN SINCE THE 1930S. WHY? BECAUSE NON MIGRAINE PEOPLE APPARENTLY TAKE THEM FOR FUN? LIKE THEY DO OTHER: POT, HEROINE, HYDRODODENE, ETC.

MIGRAINE MEDICINE IS NOT EVEN A SCHEDULED MEDICATION. SOME IS AND TIGHTLY MONITORED. THAT IS FINE. NEVER EVER TAKE MORE THAN GIVEN TO YOU. NEVER.

SHOULD YOU DO, THEY WILL THINK YOU REALLY DON'T HAVE MIGRAINE BUT ARE LOOKING FOR A FUN MEDICATION TO MAKE YOU FEEL GOOD. WELL, TAKING A MIGRAINE MEDICATION FOR PAIN IS NOT, I REPEAT, NOT A FUN MEDICATION BELIEVE ME. IT DOES NOT MAKE YOU FEEL GOOD. IF BRINGING PAIN LEVEL DOWN IS FEELING GOOD, THEN YES THAT IS TRUE. BUT TO TAKE MEDICATION WHEN YOU DON'T HAVE PAIN IS NOT GOOD AND WILL MAKE YOU SICK AND FEEL LOUSY.

THEY THROW YOU UNDER THE TRAIN TRACKS AND PUT THE SUFFERING SOUL IN THE SAME CATEGORY AS THE DRUG ATTICS WHO TAKE DRUGS FOR FUN. DEAR GOD HELP US.

SOMEONE NEEDS TO SPEAK UP, SOMEONE NEEDS TO CHANGE THE REVOLTING ATTITUDE MOST DOCTORS HAVE OF MIGRAINE SUFFERS. NOW.

IF YOU HAVE TERMINAL CANCER AND TERRIBLE PAIN A DOCTOR WILL IMMIDIATELY GIVE YOU THE HIGHEST LEVEL PAIN MEDICATION.

IF YOU HAVE HEART SURGERY AND HAVE TERRIBLE PAIN THE SAME.

SAME HOLDS TRUE FOR ALL OF THE DISABLED PEOPLE IN THE WORLD WITH ARTHRITIS, AND OTHER CONSTANT DISEASES WHERE THEY ARE SUFFERING, WHERE THEIR WORLD WILL STOP.

SO, THE MIND AND NEGLECT OF THESE DOCTORS HAS GOT TO CHANGE. THE GOVERNMENT HAS TO STEP IN, SLAP THEM DOWN AND RE-TRAIN THEM.

I SAY ALL THIS AS MY COMPASSION FOR YOU ALL WHO SUFFER. YOU DON'T HAVE TO SUFFER!

YOU DON'T HAVE TO HAVE YOUR JOB, LIFE, SPOUSE, CHILDREN AND THE REST OF THE WORLD GO AWAY WHILE YOU LAY DYING OF PAIN FOR WEEKS ON END WITHOUT HELP FROM THE MEDICAL COMMUNITY.

IF A DOCTOR HIMSELF HAS A MIGRAINE AS PAINFUL AS YOURS, HE OR SHE COULD NOT PRACTICE, GO TO WORK, EAT PROPERLY, SEE THE DAY OF LIGHT, GO ON LINE, HEAR ANY NOISE. THEN AND ONLY THEN WILL THEY KNOW, I MEAN REALLY KNOW - BECAUSE THEIR LIVES WILL BE IAS RUINED AS YOURS IS.

I HAVE TAKEN ALL AND I MEAN ALL OF THE MIGRAINE PREVENTION MEDICATIONS AND HAVE SPENT ENORMOUS MONIES ON CHIROPRACTORS, MESSAGES, YOGA ETC (WHICH ARE GOOD IN AND OF THEMSELVES) BUT THEY WILL NEVER EVER TAKE AWAY THE PAIN OF A MIGRAINE.

I HAVE FOUND THAT THE ANSWER IS IN A DELICATE BALANCE OF PREVENTATIVE MEDICATIONS, GOOD UNDERSTANDING WITH YOUR SPOUSE AND FAMILY, WORK, AND AN EXERCISE WHICH YOU CAN ENJOY. MUSIC TO FEED YOUR MIND AND SOUL WITH THE PAIN COMPASSION IN THE FREE WORLD WHO KNOW YOUR CONDITION AND NOT LET YOU SUFFER.

IT IS A MEDICAL ABOMINATION, A DISGRACE TO LET YOU SUFFER.

MAKE SURE YOU HAVE ALL OF YOUR MEDICAL XRAY, REPORTS WITH YOU. KEEP THEM IN A SAFE PLACE.

GET A FULL BODY MESSAGE ONCE A WEEK AND LISTEN TO MEDITATION MUSIC TO TAKE YOU INTO GOD'S LOVE.

BAD DOCTORS NEED TO GO HOME. DON'T BE PUSHED AROUND, REPORT THEM BY NAME. IF THEY HURT YOU FURTHER, THEN THEY NEED TO BE REPORTED.

Cally01 profile image
Cally01 in reply to MIPAINGRAIN

Wow!!!!! Bit of a RANT !!! Wee all have our own opinions and react differently to the many meds / preventors out there.

People with migraine are only too aware what the risks of the medications are but have no choice but to try to gain some life back from this affliction.

As for 40k for DHE - certainly didn't pay anything like that.

You can't call out all specialists as treating people as guinea pigs, I'm not a social experiment for anyone!!!

I'm glad meditation works for you but as migraine is so complex so too are treatments. There's no one option that fits all!!

Be well.

KateeB profile image
KateeB

Yes I've had these injections several times. Worked really well - no pain for two weeks but then it came back. Definitely worth trying . Good luck

babs1234 profile image
babs1234 in reply to KateeB

Thanks Kate.

babs1234 profile image
babs1234

Wowwwww!!!! I beg to differ. There are many people who have been helped by doctors/headache specialists. Many people have reported being a whole lot better on preventatives, abortives, Botox, etc. The problem with migrain is that there are many strains and every person reacts to medication differently. Not saying for one moment all doctors are as sympathetic as they should be but you can't tar them all with the same brush. I have heard there is a cure for cancer but the powers that be don't want it used as there is much money to be lost. NOW that is horrific. I wouldn't put it past them though😢

jackiesutton62 profile image
jackiesutton62

Hi Babs I have chronic migraine and hemicrania continua as well. My Nuerologist prescribed indometacin for hemi. He said if it's truly hemi indometacin takes the pain away. It's a strong anti inflammatory you need to take omeprazole for your stomach too. It worked for me rarely get the pain now.

Dual trigger point injections, if that's what they are suggesting, didn't help me. I had 4 lots but got no relief from hemi or migraine. Botox is giving me some relief after 1st round. Having more in Jan.

Good luck it's soo painful isn't it.

Jackie xx

babs1234 profile image
babs1234 in reply to jackiesutton62

Certainly is. I'm not sure I'll be able to have that med as I have had an ulcer and already on lansoprozal getting so fed up now x

I

Cally01 profile image
Cally01 in reply to babs1234

Hang in there Babs nerve blocks might just work. I do know someone it did work on. Fingers crossed 😘xx

Cally01 profile image
Cally01 in reply to babs1234

Babs i bought feverfew migraine today, says you can't take asprin /ibuprofen while taking it, can give you stomch problems?

Has it made your stomach worse?

Xx

babs1234 profile image
babs1234 in reply to Cally01

Wow. It's one of the Ines the doc told me to stop yesterday. My stomache is always iffy going for an endoscopy in December. This is never ending 😱

Cally01 profile image
Cally01 in reply to babs1234

Stopped them the herbal doc said their too concentrated.😣

Sticks95 profile image
Sticks95

Nerve block injections are soooo painful but amazing for migraines! Good luck xx

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