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ExcitingUserName

HI

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Hi.

Just thought I'd make a post

 

blahblahblah

started getting CHs properly when i was 19, saw doctors and they said there was nothing wrong with me, got loads of teeth pulled, got struck off from doctors and kicked out of hospitals as "there was nothing wrong" with me, lost my job, ended up homeless for 7 years eating out of bins, y'know, the usual stuff.

ended up nearly 30 years undiagnosed until i diagnosed myself through google.

got sumitriptan a couple of years ago, that helps but when you're getting 12 attacks a day...yeh great

oxygen doesn't really help, melatonin does nothing, neurologists at first refused verapimil as my heart rate is already very slow <50 but recently they've said they'll try me on it.

i'm a bit wary of it. considering telling the neurologist i'm not interested in seeing them anymore.

does anyone have any thoughts on verapimil? 

 

as a long term sufferer with no meds i'm well aware they can come and go, sometimes 18 months off, sometimes 10 months a year. whenever anyone says this or that works  i'm very wary and think any results are just coincidental, example being i went vegan and didnt have a CH for over a year, just a coincidence imo. i'd be interested in seeing a test result of something stupid like as soon as you get a cluster headache try putting a glove on your left foot and eating a winegum, i'm sure 30-45% of people would say it helped, obviously nonsense.

does verapimil actually do anything? you'll still get CHs yeh? so....in reality it does nothing if that's the case?

i was a long time heavy user of psilocybin years back and can guarantee they never helped me either, if anything they made it worse.

so far only sumitriptan injections have impressed me.

 

so yeh, verapimil?

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Yes, Verap works for many and very well for some. Others have it work for a while, only to fail in the long run. It is a first line med for CH. It lowers blood pressure, so that can be a limiting factor. What is your BP? 

I took it for over a year and it worked great. Then I went off on the advice of my dentist. When I tried to go back, the 240mg I took per day did nothing. And my BP went down to 80/60 when resting. That prohibited an increase, so I ditched it. If it is not working, why take it? If you can take a high enough does, it usually works. 

You can find a lot of info on busting in the closed boards. Many will not join in on the 'open' boards - the ones you see listed before logging in are the open boards. And the bots can access them. 

Read the New Users Banner at the top of the page for a lot of info on the site. O2 is the best abortive, but it must be used correctly and at a flow rate of 15 to 25 lpm. Used incorrectly, there is little to no benefit. Doctors generally just prescribe and do not know how you need to use it for relief. Read the O2 page. It should be your best friend.

I also suggest the D3 Regimen. It has been a lifesaver for many of us! 

Have you been given a run of Indomethacin? There is a CH look-a-like that responds very well to that while CH does not. I bring it up because you are having up to 12 hits a day. How long do they last? 

ATB  and Welcome!

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Hi Newbie, 
I have a similar history in that I experienced my first attack at the age of 19 (I'm 58 now), I was in the Army and the Army docs had no idea what they were dealing with so they just injected me with Demerol or Morphine to kill the attack. Didn't get diagnosed until roughly 4 years ago. 
I have what is referred to here as episodic attacks, usually once a year, lately twice a year. The attacks last about 45-60 days. Thinking back, I may have managed a year with no attacks, but it's hard to remember that far back. 

My General Practitioner initially prescribed Sumatriptan in pill form - this "worked" but took almost as long as the attack would last. After a couple years, I finally found a Neurologist and he prescribed Sumatriptan in injectable form. This is the single best treatment I've found to date, though with some side effects (more on that later). 

My Neuro also prescribed  Verapamil as a prophylactic (preventive) measure. I took it for about a year before giving up on it, since it didn't prevent further attacks and I am already on another medication for hypertension (Atenalol)  

I'm currently using the D3 Vitamin regimen discussed at length on many posts here. I can't say if it works yet, since I started it at the end of my last cycle, but I'll keep it up until I feel like its not worth the trouble. 

Most everyone here talks about oxygen as an abortive measure. As I write this, I'm going through the process to source all of the components for that treatment. I have a strong belief that it will help, just based on how well I know my own body and all the positive stories here. 

Getting oxygen is a pain. I got my  GP doc to write me a prescription without much trouble at all (a lot of people here talk about that being one of their biggest challenges), but that's where my challenges began. I took my prescription to a local medical supply, long story short, they refused to fill the prescription. I even offered to self pay, but it was no dice. I'm calling around today and hope that Airgas will help, but if they won't, I found a source on amazon for an industrial tank, prefilled, and I can go to Tractor Supply or the local Farmers Co-op to get it refilled. 

I talked about side effects with Sumatriptan - know that this drug is a powerful vasoconstrictor. That's what relieves the pain in the head, but it also gives me a heavy pressure feeling in the chest as it increases blood pressure. Constriction of arterial vessels increases systemic vascular resistance, which leads to an increase in arterial blood pressure. Constriction of venous vessels increases venous blood pressure and increases cardiac preload and cardiac output, which increases arterial pressure. All of this is not really good for an overweight smoker in his late 50s. 

I won't give up the Sumatriptan, but I've taken a couple of steps to help.

First, I talked to my Dr. about prescribing a vial instead of the preloaded autoinjectors. Many folks here believe we don't really need a full dose to get relief. So, I'm hopeful this will help. It also means I don't have to hoard as much of the drug during my off cycles so it lasts through the attack season. (Insurance company only allows for about a dozen injectors per filling, so I make sure to buy all year long so I have enough on hand when attack season starts. 

Second, as mentioned above, I'm getting oxygen. 

Other things that help - everyone is different, your mileage may vary -
Caffeine - energy shots or coffee. These can make things a little more bearable, but its not always helpful since most of my attacks happen at night when I'm trying to sleep or get ready for bed. 
Sleeping in an elevated position - I sleep in my easy chair during attack season. Sometimes I can get through the night, sometimes not. 
I find a nice long hot shower to be helpful when nothing else is available. 
I avoid alcohol during the attack cycle. Any amount can trigger an attack, within 30 minutes of the first drink, like clockwork. 

I've talked to a few folks here who share the same experiences as me, high stress is good to prevent the attacks, relaxation brings them on. Strange, but true, at least for me. This leads to my attack cycle being very exhausting. When the cycle ends, I sleep for days just to get caught up. 

I hope you find my story helpful and you find relief. 

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