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The old girl returns!

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769 total posts
Currently suffering :(
Yep still around! To all my old friends have had a very rugged 12 months or so but have come out still smiling. Went down with the dreaded C in October 2014 a hard hitting Lymphoma which dragged me to my knees. Huh I thought maybe chemotherapy could be the treatment for cluster headaches....nope! In remission April 2015 and since then have made sure have made every day...leading into every week a winner...prognosis is not brilliant. But not sitting around waiting! Overseas in June 2015 to Tuscany to painting workshop. Painting has become my activity to go to and keeps me going. USA April 2016 to celebrate 12 month's remission and Gson's birthday in Maryland. Trips in Motorhome. Of course to add to troubles husband had stroke in February! That shook us up! OK now.
Now the question what about headaches....yes...still have them....they are a friendly daily reminder I am alive! If I'm lucky I might get a break a couple of days in a row, but, 1-2 a night early morning. It was interesting reading through the forums and noting that there doesn't seem to be too much that is new. I have been through the run of pills again including melatonin to Topamax; even tried "CEFALY", nerve blocks, Botox again, now just relying on Imigran for the ones I can't manage with my breathing etc etc.
If I have missed anything new can you please let me know. In the very best to old and new.
Happily. Older and perhaps a little more wiser
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From: Victoria Park
93 total posts
Not currently suffering :D
hi Dusker,

glad to see you are still around, sorry things are not going well.

i am in awe of yourself and others on this site who have it so much
worse than myself, yet manage to have such a positive attitude.

topamax is a bugger of a drug, side effects are terrible.

you probably know / have tried these things already,

melatonin - needs to be about 10mg a day..

oxygen - used correctly can be effective.

greater occipital nerve block (for some) can give up to 3 months
relive from the beast.

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769 total posts
Currently suffering :(
Hi Kim
Yep to all of them. Oxygen was my savior for quite a long time then just sort of lost its efficiency. Topamax the first time around did work for me in controlling the attacks in the acute stages, but now so chronic it just laughs at me...even the side effect of losing weight doesn't work! By jingles the others do tho.....tying them in with "chemo brain" (which indeed does exist) the neurological side effects had me a blithering idiot! Plus didn't work even when up to 150mg twice a day....of course then you have to come off them equally slowly. The CEFALY head band did seem to work, I had a break of about 7 days when using it but then they kicked back in and the it just seemed to aggravate rather than diminish headaches.
My haematologist and neurologist are buddies (bully for them), I told them surely between the two of them they could come up with something that cures me of both my maladies at they stood at the foot of my bed discussing everything but me ....hey you guys I am here! They are both great Doctors who I know will never give up on me!
Thanks for replying to me
My very best
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From: cowes
31 total posts
Currently suffering :(
Hi ,
I thought I would add this
my partner was getting 8 attacks a day during the day and night after giving up prednisolone as that was the only thing that worked ( because the side affects, )She tried many things that all clusters sufferers have tried including the dalt and vit D but all did nothing , Oxygen works well . Strange she went on lyrica for back pain , then the clusters reduced to 1 to 3 attacks and rare to get them now during the day , manly when she goes to sleep , but after one or 2 attacks then she sleeps well . She is on 300mg BD no side effects , but when she went up to 600mg BD the attacks increased so back to 300mg , That is helping along with the oxygen . If she lets a cluster go on the lyrica does not dampen the pain. It looks like lyrica has done a chemical change thats reduced the number of attack she gets . Maybe its because it can reduce glutamate ,. re :neurotransmitters
lyrica is based on gamma-aminobutyric acid .
Alcohol can still trigger a cluster though
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From: Latrobe
259 total posts
Not currently suffering :D
Hi Dusker, Nice to see you here again smile

I had an attack for 6 weeks in January, first one after remission of over 5 years. So... it's still with me sad

My sister also gets CH, and she has tried botox this year, and so far so good...This post was edited on 21/06/2016 at 4:52 pm
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From: Sydney
4 total posts
Currently suffering :(
Hi Roger,

I was so pleased to see the video that you have on the home page".Cluster headaches/ migraines"

I have to say this was such a pleasant surprise to me,as i walked away from this site 2 years ago as we had a private conversation about what makes a cluster headache sufferer fit into your box at the time,it is great to see you are able be more inclusive about chronic sufferes

As said before i am diagnosed with chronic "migranious niralgia"(or more commonly known as chronic cluster headaches) by one of the leading G.Ps in Sydney.

Today I was searching for the correlation between cluster headaches and addiction (as i was struggling)and read a great thread back in 2013 which helped me a lot ,which reminded me about this site,

I was prescribed lyric 300-400mg per day approx 6 months ago, which has been working well. It brought down my CH to 2 -3 days month But over the last 6 weeks i have been severely triggered by shingles and other bad viruses that are going around and have had stretches of 20-25 days per month and i am on my knees, had to resort to panedine forte again and,being a recovering addict and clean this is always a problem to me. i am attending Narcotics Anonymous meetings again which is good to to remind myself of where i could go and where i came from.Sometimes i feel so helpless with this condition.
I will go and see my neurologist again it has been about 3 months since i visited him
Thanks for the site and keep up the good work Roger and sorry to hear you are suffering

Oh here was my post back in 2014

19 Sep, 2014 - 7:35 pm

Hi Miss Diagnosed,

Thank-you for sharing,my name is Henry and i totally relate.. as i was finally diagnosed with Chronic "'Miganous Niralga"' by a leading Sydney neurologist (or more simply put CH) approx 6 years ago.. before that i too thought it was a sinus problem and actually had my sinuses cut out on my cluster side(right side) and to my dismay my CH were back the day i was relapsed from surgery

I affirm all your symptoms to be true and correct to be here you are one of us.. i too have pain -like a skewer/hot poking behind your eye,feels like sinus pain but is in the brain, and goes all way down my right side,neck and shoulders, my right sinuses feel like they are swollen.. when they are not,my teeth always go numb on the right side,it is in the brain pain behind the eye that is indescribable,sometimes my right eye is too painful to touch..The headache is constant like a cyclone that is always there(accept in the lulls) and then comes the big wind gusts that knock me over for a few hours ..then it drops back to just the cyclone and this can go for is called chronic...there is perhaps a few days relief over the period of a month.I have to keep moving to avoid the pain..can sit still

there are people on this site that will tell you that this is not possible nobody has cluster headaches like these.. apparently their version of cluster headaches is the correct one ..that is their story and true for them... mine is like yours, mine is the story of chronic sufferer and i share to your symptoms

I often feel nausea in the midst of a cycle..when i was younger i would throw up mid headache,this happens to me less as i get older

I have tried over 20+ supposed medications and their side effects from desril to lithium to oxygen etc etc...unfortunately Nothing worked .....
Most times.. i bear it till it gets too bad then retreat to the bedroom top pace and groan ,i take 2-4 panedine forte to dull the impact..and if that doesnt wotk take 3-4 more yet i am acutely aware of the consequences of opiates and their seem panedine is the lesser evil for me today
My wife has my diet regime for me,and i am also going to stop using my Bluetooth and try to be away from radio waves (this is just an experiment as my CH have been getting worse since using my Bluetooth but who knows if this is the culprit.. possibly not helpful)

I am acutely aware of smells.. and if a solvent is within 500 meters i can smell and can be triggered,i cannot sit on a perfumed bus or enclosed spaces ,my wife cannot use standard cleaning fluids as they are a triggers,hot days full of physical work are triggers, bed to be present for my family sometimes regardless of how i am feeling

i don't(cant) smoke, don't(cant) drink alcohol, coffee is a huge trigger for me haven't had coffee for years,chocolate is a trigger,but relapse in frequently to my demise,hams and salamis are lethal for me and so goes the list..
The change of seasons is the worst trigger.. knocks me flat,or a big low pressure system
Or recently it also has been viruses i pick form the kids(i have a daughter 6 and boy 4)this year has been a killer as each moth presents a new virus and a new onset of CH
I have no solutions for you to say keep coming back here, as it is wonderful not to feel alone, to be able to have a voice and most of all read and listen and relate,it has truly helped me to read others stories,although i should share more often..,just reading has helped me immensely
I have suffered these symptoms for over 40 years now and unfortunately for me it is getting worse i have little to cling onto but when i read your story tonight i felt i was not alone again. Thank you and please stick around

P.S be aware that most G.Ps basically know nothing of this and if you ask them they will probably google it in their surgery to find out what you are talking about...probaly refer you to a neorolgist..keep your chin up and know you are not alone
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12 total posts
Not currently suffering :D
Hi All,

I am not a Migraine Sufferer since my teens, but my teenage son has had a hell of a time over the last few years. We tried all of the conventional practitioners and natural therapies available to us here in Tasmania. We were on the waiting list for the Royal Children's Hospital in Melbourne when we came across the following treatment. It is not specifically addressing this disorder, but addressing the body as a whole.

Anyway, we decided that we had nothing to loose, as preventative medications were taking over my sons life. There was just something about that which didn't sit right with us.

So this is our miracle treatments for our sons Chronic Migraines. If this helps just one person battle this demon then my constant posts will have paid off.

All the best with your battles!

Leanne post was edited on 18/07/2016 at 10:42 am
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