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New CH.com Forum › Cluster Headache Help and Support › Cluster Headache Specific › This time was supposed to be easier...

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This time was supposed to be easier... (Read 1150 times)

Peter B

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This time was supposed to be easier...
Mar 29^th, 2014 at 8:39pm

...So by 2011, I had finally found a great neurologist who really understood CH and got a good O2 supply, and found a dose (very high) of Verapamil that worked.

So when the beast came back last week, I quickly got into gear. I have my appointment, O2 just arrived...I can make this. I can do this.

Except that yesterday I had 8 attacks. A few in the day and then every two hours at night. O2 helps but I've had no real sleep and once again...I am afraid to go to sleep. And I am going through my O2 real fast. I frackin hate this Angry

Already had a few more today and it's time to go to sleep. I am scared to drive during the day - I'm so tired - but I am scared to go to sleep because I know that two hours in, and the d*mn fracker will hit me again.

*sigh*

I can do this....I can do this....

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BobG

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Re: This time was supposed to be easier...
Reply #1 - Mar 29^th, 2014 at 8:54pm

O2 running out....get on the phone now to order more. Don't wait until the tank(s) empty.
Alot of us take a shot of energy drink at the first sign. Red Bull, Monster, 5 Hour Energy....
Be carful of high dose of Verapamil. It can play hell with the blood pressure.
Can you use a abortive like Imitrex?
You can do this....you can do this.... Yes you can.

Stay stressed. Never relax. Never sleep. Ever.

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wimsey1

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Re: This time was supposed to be easier...
Reply #2 - Mar 31^st, 2014 at 8:21am

You can do this. What Bob said, and I also use Imitrex injections and Migranal nasal sprays. These help interrupt the cycle to give some relief. The trick is to stay positive between hits. Have you explored an Occipital Nerve Block? It doesn't work for everyone apparently, but it has done wonders for me. See Dr Wainger at the Mass General Pain Clinic. blessings. lance

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Brad C 406

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Re: This time was supposed to be easier...
Reply #3 - Apr 1^st, 2014 at 1:16am

I know what your talking about Peter, I have been going through 8 week cycles every other year for the last 10 years. Five weeks ago it came back just like they have in the past but this time just like with you they have been different. In the past they start out with 2-3 a day and as the weeks go on they get less and less till they are gone. This time they started out slow giving me a false since of hope, and now 5 weeks in to a cycle they have gotten bad. Every 4-6 hours I am getting one and at night its even worse and the pain at night is 10 times as bad. I laid in the floor at 3am this morning waiting on the imitrex to kick in, it took twice as long and the o2 did nothing to help. These CHs at night take me back to being a little kid, I just lay there in pain a tears. I am with you I am so tired I can't sleep and I am scared to go to sleep because I know what is waiting on me. I drive around 350 miles a day and with little to no sleep it is so hard to do that. Today I started the vitamin D3 regimen so I am praying that will help. At this point I am willing to try anything that I thought might help, what I would not give for just one full night of sleep. But like you said we have to hang in there because like so many others on this site have done we can and will survive! Hold your head high and keep positive, if you need to talk to anyone who understands just hit me up I get it.

-Brad

Thank You,
Brad814
@Dale_Yeah406

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Guiseppi

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Re: This time was supposed to be easier...
Reply #4 - Apr 1^st, 2014 at 8:37am

I always forget how bad CH is until it's back in full cycle. I'm 4 years pain free on the D-3 regimen after over 30 years as an episodic. Please give it a read and a try:

Follow this link to the medications section of this board and read the post

Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

It’s a vitamin/mineral/fish oil supplement, all over the counter stuff. It’s up to an 81% success rate of those who try it and respond to the survey so you’re just shooting yourself in the foot if you don’t give it a shot. I’m 3 years pain free on it after a 35 plus year track record with episodic CH. Best of all, it’s healthy for you even without CH!

As of January 20, 2013, the compiled raw data indicates an efficacy of 80%. 240 out of the 300 CH'ers who have started this regimen and stayed on it for a month or more have experienced a significant reduction in the frequency and severity of their CH... 78% of the 300 CH'ers experienced a pain free response and 60% of the 300 have remained essentially pain free. Episodic and chronic CH'ers respond to this regimen at roughly the same rate.

Preliminary survey results indicate most of these CH'ers were pain free before the end of the third week with some responding in a little as 12 to 24 hours. The average time to respond is five days

Joe

"Somebody had to say it" is usually a piss poor excuse to be mean.

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shoot

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Re: This time was supposed to be easier...
Reply #5 - Apr 4^th, 2014 at 5:12am

Please try the D3,it broke my cycle in 3 days,I will take it the rest of my life just out of pure fear. Batch just posted a couple of days an update to the D3 regimen indicating that if the D3 initially or on down the road proves ineffective adding B12 could prove to be a missing link. This is being researched by a neurologist in TX I believe,its a very good read.

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Peter B

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Re: This time was supposed to be easier...
Reply #6 - Apr 5^th, 2014 at 2:05pm

thanks all for the input and support. I will be going on D3 today.

BobG - I finally got some Imitrex - (Sumavel, specifically) - but I almost always get a horrible rebound with Imitrex.

Also just started on Verapamil - it allowed me to get some sleep so I now get my attacks in early morning instead of all night long.

*sigh*

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Peter B

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Re: This time was supposed to be easier...
Reply #7 - Apr 5^th, 2014 at 3:49pm

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