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In search of any help (Read 1219 times)
Nikayla
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In search of any help
Aug 20th, 2021 at 5:40pm
 
My partner is a chronic cluster headache sufferer the past 2 -3 weeks have been getting progressively worse but this past week has been very bad. I feel like we have tried almost all medication options available to us and i am at a loss of what else to do.
This past week his headaches have gotten so bad that he is getting attacks every 1-2 hours generally. He can barely sleep and is scared to try as as soon as he even lies down he will start to get a headache, no matter what he does they seem to be every 2 hours.
He has tried MM multiple times and hasnt worked this time around. We got the d3 regimen to try that and he did the loading dose plus an extra 4 days of loading and then a few days as normal. About 2 weeks in total and noticed no change in them at all so has given up for the time being. I feel like we have tried all medications we can access and either it works for a start and then stops or does not help at all. We cannot get access to O2 in our home, the only way he can access it is emergency depaertment but has to fight to get it generally or ambulance if called. He has been suffering so much this past week especially and he is getting pretty depressed because they just wont stop. I dont know how else to help him. We live in new zealand so some things arent legal or subsidised that we can try.
Thank you in advance
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« Last Edit: Aug 20th, 2021 at 6:33pm by Nikayla »  
 
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AussieBrian
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Re: In search of any help
Reply #1 - Aug 20th, 2021 at 7:10pm
 
Nikayla, we love anyone who helps or supports people who must suffer terrible headaches so you're immediately among friends who understand and care.

Tell me, has he been formally diagnosed with Clusters? I ask because getting hit every 2 hours or so isn't really a common trait.

Consider reading up on other headache types as well, particularly the likes of paroxysmal hemicrania.  These beasts are remarkably similar to CH but, happily, they can be tamed far more easily.

We're always here to help,

Brian over the ditch.
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« Last Edit: Aug 20th, 2021 at 7:11pm by AussieBrian »  

My name is Brian. I'm a ClusterHead and I'm here to help. Email me anytime at briandinkum@yahoo.com
 
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Nikayla
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Re: In search of any help
Reply #2 - Aug 20th, 2021 at 7:22pm
 
Hes had them for 13 years and has been i believe by GP and in the ED years ago.
This is the worst they have ever been in his life. And not even psychedellics are helping. He is also going to run out of meds tonight as he has no specialist care and his GPs are not extremely familiar and just keep trying to get him to stop immigran which is the only thing that he has access to that aborts his headache. Its getting too much and he keeps telling me he just wants to die. We have too little kids and im running out of ways to try help him. I know he doesnt actually want to die and just wants the pain to stop but they havent stopped for a whole week now. Last time he saw a neurologist he was told that theres not really anything left to do and getting oxygen approved would be too difficult and that was it.
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AussieBrian
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Re: In search of any help
Reply #3 - Aug 20th, 2021 at 9:43pm
 
Any neuro says there's nothing left to do and getting oxygen is too difficult deserves a goodly dose of CH. Just once.

My suggestion is to find another doctor, quick time.

Also, click on the green 'messages' box in the top left of your screen.

Please don't lose hope because there really will be a way out of this. We just have to find it.
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My name is Brian. I'm a ClusterHead and I'm here to help. Email me anytime at briandinkum@yahoo.com
 
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Nikayla
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Re: In search of any help
Reply #4 - Aug 22nd, 2021 at 8:24am
 
I agree. Unfortunately we are now living on 1 wage and thats iffy with how bad hes gotten and have 2 little kids so we dont have a lot of access financially or otherwise. We live in taranaki which does not even have its own neurologist or anything so appointments are hard to get and take a long time. Had to wait like 5 months for the last neuro appointment.
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AussieBrian
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Re: In search of any help
Reply #5 - Aug 22nd, 2021 at 9:01am
 
It can be so terribly difficult,  as many of us know too well,  and it's almost as though they throw these obstacles in front of us so we don't dare darken their doorsteps with a problem that requires their thought, care or empathy.

There's a list of buttons down the left side of your screen and one of them is  Oxygen Info.  Almost everything there can be bought privately from a welding supply service while our own little shop can come up with the mask etc.

Seems a bit daunting,  I know,  but it really is a great line of defence.

Also consider chugging down a can of Red Bull  (of all things)  at the first sign of a hit.  Sounds weird, tastes awful, but it's something to do with the caffeine/taurine combination that gives many people a lot of help.

Ice packs are great and frozen peas are our friend while super cold/hot showers can bring relief.

Keeping a headache diary can also be a big help when you finally get to see a competent doctor.  Time of each hit, duration, intensity, what he was doing at the time, what he'd been eating, even the weather.  All this information can suggest possible triggers which is a huge step in minimising further attacks.

It's frightening,  no doubt about that,  but every step forward is a step toward normality and we're on your side.

We care.

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My name is Brian. I'm a ClusterHead and I'm here to help. Email me anytime at briandinkum@yahoo.com
 
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Nikayla
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Re: In search of any help
Reply #6 - Aug 22nd, 2021 at 9:07am
 
Ive tried to do headache diaries a few times for him but always end up not remembering everytime.
He uses energy drinks when he gets one or sometimes to try help with shadows.
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Peter510
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Re: In search of any help
Reply #7 - Aug 23rd, 2021 at 3:30am
 
Hello Nikayla,

Thank you for being such a strong supporter. Each and every one of us rely heavily on our supporters and we know it’s not any easy task.

I just wanted to refer back to your original post, where you touched on trying the D3 Regimen for about 2 weeks.

Did he get his bloodwork done to establish what his D3 level was before starting? It’s important to get this base line to enable him to have an idea where his pain free level is and so keep it there going forward.

His Local Doctor can arrange that blood test.

Also, as you are coming into your Springtime, levels of Pollen are starting to rise, which adversely effect Cluster Headache sufferers, so some intervention there might help. Diphenhydramine Hydrochloride, (brand name Benadryl in the US) is an antihistamine that helps a lot of us with this problem in Spring and Autumn,

You could  discuss this with the local Pharmacist. It doesn’t require a prescription in most countries and can be purchased on-line.

It could be helpful to talk direct to the inventor of the D3 Regimen, Batch. You will see his name all over this site, Particularly in the treatments section, and I know he wouldn’t mind a PM (personal message).

Is there any way your local Doctor can help you with home Oxygen, even for the immediate short term? At least until you can get him to a Neurologist. It is the best abort we have.

I really feel for your situation. I too am Chronic and have been where you are now. In truth, the D3 Regimen probably saved my life, but it has to be done properly and given a chance to embed. And I also tried it the first time and gave up, but desperation drove me back to taking it more diligently, with my Doctor on board.

I wish you both well. Please keep in touch and let us know how you get on....and contact Batch.

Peter.
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Theoptomist
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Re: In search of any help
Reply #8 - Aug 29th, 2021 at 3:17pm
 
Can you have your doctor prescribe injectable Sumatriptan? 6ml shot in any fatty part of the body, stomach, thigh,upper arm. It's not a narcotic, it's a constrictor  which shrinks the blood vessels around the Trgimanal nerve which causes the headaches. Works in minutes. It's a true God send.
Good luck to you both.
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Nikayla
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Re: In search of any help
Reply #9 - Aug 29th, 2021 at 7:38pm
 
yes that is the only thing he has access too currently and he generally splits them but are getting so intense this past week hes now having to have full ones for most attacks. hes getting attacks every 2-3 hours and is extremely hard for him to even attempt to sit through so he then uses a lot of sumatriptan and the drs cant give him enough to last and dont like to give him so much.
but its the only thing he has that takes them away at all so obviously he cannot stop using them.
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AussieBrian
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Re: In search of any help
Reply #10 - Aug 30th, 2021 at 12:22am
 
Attacks every 2-3 hours isn't common at all with Cluster Headaches and if he's taking Sumatripan for all or even most of them then you might consider looking at rebound headaches which often happen with medication overuse.

This is a link from Harvard and may help a little.

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We're certainly not doctors here but we try to help where we can,

Brian on West Island.
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My name is Brian. I'm a ClusterHead and I'm here to help. Email me anytime at briandinkum@yahoo.com
 
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Graemel
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Re: In search of any help
Reply #11 - Sep 6th, 2021 at 1:50am
 
I live in Taupo. You can read my history here. I ended up in a chronic pattern with crippling pain. My wife researched and saved me. You can ask your quack to put you on a high dose verapamil. Once you get high enough CH will stop. Then you can taper off. Feel free to contact me if you need more help. This worked for me.
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