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Hello (Read 3792 times)

sandt38

CH.com Newbie

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ouch

Posts: 19
North Carolina
Gender: male

Hello
Jul 29^th, 2008 at 3:48pm

Well i have just started to deal with my clusters again after a 4 year hiatus, and I figured I would see what was out there, and I came across CH.com. I just had one subside (here at work, yay!) and figured I would look and see what I could find online.

I currently live in NC, by way of California and having been raised in Buffalo NY. I am a white male in my mid-late 30s in fair shape, a father of 4 sons.

I guess i have been suffering for roughly 12 or 13 years now. It was interesting to read the main page and see these people suffering from the same thing I am. There is no way to describe what I am feeling when they hit me at work, and people look at you like you are full of it when you try to describe it.

I was fortunate to have found out what they were about 7 years ago, and also fortunate to have found a doctor who has treated patients with clusters as well. I remember my first series of attacks... the second one I ever had the pain was so bad. I was curled up in my bedroom moaning and rocking in the dark and my wife sat in the living room afraid of what was going on. Every night between 7:30 and 8 o'clock they returned. I thought I had a brain tumor or something. I was in so much pain I began projectile vomiting. I threw up so forcefully I busted blood vessels in my eyes. x-rays, cat scans, MRIs, visits to the dentist at 8pm... I did it all, then they just quit. Only to resurface a year later.

So here I am, 13 years later and starting to suffer all over again. I just wanted to introduce myself and look around to see what is out there. I will take the time to read what others have gone through, and what is being done to ease their pain. After I get familiar with how things work I will begin to post outside my intro.

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mezza CH.com Alumnus Offline I love YaBB 1G - SP1! Posts: 415 north carolina Gender:	Re: Hello Reply #1 - Jul 29^th, 2008 at 10:40pm Welcome Sandt- Glad you found this board and hopefully as you read through the posts and all the links you'll get even more relief! I live in North Carolina too- Lake Norman area- There are a few others from NC here too. Where in NC do you live and who is your Neuro? Kelly
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Guiseppi

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San Diego to Florida 05-16-2011

Posts: 12063
SAN DIEGO, CALIFORNIA USA
Gender: male

Re: Hello
Reply #2 - Jul 30^th, 2008 at 1:53am

When you get a chance, post your treatment regimen, the strength of this board is its combined knowledge. You might drop a pearl we haven't heard of, we might be able to tweak your routine to make it more effective.

I use lithium as my preventative medication, a prevent being a med I take while on cycle to reduce the number and the intensity of my attacks. When I get hit my first line abortive is pure oxygen. If you're not already using it, give it a try. It's been amazing the number of people getting relief using it. Read the link on the left as it must be used correctly to be effective.

Glad you found us, pretty cool to realize you're not crazy and more importantly you're no longer alone! Welcome home brudder!

Guiseppi

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

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sandie99 CH.com Hall of Famer Offline Wish it, dream it, do it - inspite the pain! Posts: 11975 Finland Gender:	Re: Hello Reply #3 - Jul 30^th, 2008 at 4:42am Warm welcome Sandt! Wishing you PF time, Sanna
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sandt38

CH.com Newbie

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ouch

Posts: 19
North Carolina
Gender: male

Re: Hello
Reply #4 - Jul 30^th, 2008 at 8:28am

Thanks for the welcomes!

@ Mezza-

I live in Summerfield, in the triad region NW of Greensboro. Believe it or not it was a GP who diagnosed me and my current Dr is a GP as well, who specializes in sports medecine. He has been on staff at 4 Olympics (3 winter and 1 summer) and is the sports doctor for UNCG. Dr. Lalonde is his name. My cycles have become so widely dispersed (and for this I thank God) that I don't have a neuro. During my first 2 cycles I spent a ton of time with Neuros who couldn't figure it out, so I have lost a lot of faith in their abilities.

@ Guiseppi-

I am fortunate that my cycles have become very few and far between. It has been 4 years since my last, and therefore I don't do preventative. My current regimen is very basic, 240 Verapamil and Imitrex for the onset. The doc suggested we try O2 therapy and I said that since the Verap/Imi worked last time I would like to continue with it. He said if they keep up to come see him and we would get started on this therapy. I honestly thought it was all BS, but after reading the threads on O2 I now wish I had tried it. I have also tried steroidal treatment (it has been several years since I tried it so it's name escapes me) and it made me so sick I thought I was going to die. Then, couple it with a CH and I tell you I wished I was dead.

@ sandie99-

Thanks! Wishing you the same as well!

In reading a lot of the threads I read last night, I don't think there is a lot I can add to help others. I tell people who know that if all I get in this world are my clusters every few years I can't complain. There are so many people worse off in the world then me with my headaches. In reading some of these stories about cronics, it humbles me more. My every 3 or 4 year cycles leave me nothing to complain about. My heart goes out to all you long term and more frequent sufferers... I feel your pain.

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Em CH.com Alumnus Offline I wanna go... Posts: 830 St Peter Port, Guernsey. Gender:	Re: Hello Reply #5 - Jul 30^th, 2008 at 9:01am Welcome Sandt, I'm sure you will find plenty of information and support here. Read through the information on the menu on the left hand side and on the message board. You'll find plent of advice and help here. Make yourself comfortable! Em
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Em CH.com Alumnus Offline I wanna go... Posts: 830 St Peter Port, Guernsey. Gender:	Re: Hello Reply #6 - Jul 30^th, 2008 at 9:02am Welcome Sandt, I'm sure you will find plenty of information and support here. Read through the information on the menu on the left hand side and on the message board. You'll find plent of advice and help here. Make yourself comfortable! Em
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Karl

Ex Member

Re: Hello
Reply #7 - Jul 30^th, 2008 at 9:17am

welcome and sorry your in cycle. I can really relate to having hits at work and how co-workers react to you.
My favorite is "oh I get migraines too" they mean well and they are trying to relate the only way they know how I guess, but still every time I hear that I clam up cause I know its no use explaining the difference.

We are here for you and will help how we can and we will listen.
karl

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Kevin_M

CH.com Sponsor

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withered branches grow
green again.

Posts: 8754
Michigan, USA
Gender: male

Re: Hello
Reply #8 - Jul 30^th, 2008 at 10:08am

sandt38 wrote on Jul 30^th, 2008 at 8:28am:

It has been 4 years since my last, and therefore I don't do preventative. My current regimen is very basic, 240 Verapamil and Imitrex for the onset. The doc suggested we try O2 therapy and I said that since the Verap/Imi worked last time I would like to continue with it.

Thanks for responding, Guiseppi has a point about taking a look.

Your doc seems to be on track for you, prevention is in your treatment as well as an abortive and the right suggestion for oxygen.
This cycle it seems prevention is not as effective as last time but verap seems to have been effective for you. This would be good to bring up to him, stay in contact about it. If 240mg verap has been ok with you, not bad side effects, he may try changing it to 360mg to see if it prevents better. The addition of oxygen can be a most helpful too, maybe sparingly using the trex for breakthroughs at work. What form of trex is it? Check out the tab to the left on oxygen for more on its use.
Prevention is a goal to keep in mind.

Quote:

He said if they keep up to come see him and we would get started on this therapy.

This is a good suggestion concerning prevention and an oxygen script.

« Last Edit: Jul 30^th, 2008 at 10:17am by Kevin_M »

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sandt38

CH.com Newbie

Offline

ouch

Posts: 19
North Carolina
Gender: male

Re: Hello
Reply #9 - Jul 30^th, 2008 at 10:36am

I don't think I can do more verap. I do spend a lot of time nauseous and with a constant headache. I also become lethargic when I take it. Maybe lethargic isn't the best word... I have a harder time with cognitive thought, and the ambition to finish what I have started. In my line of work this is not a good thing. I am a diagnostic auto mechanic, and intuitive, orderly, subjective, rational thought patterns are required in difficult diagnosis... and on todays cars we see a lot of complex failures. My cycle started last week thursday, and my 10 year old son took a baseball bat to the face at daycare friday, so I forgot about calling the doctor. I called him monday after I got hit at work, and just got into him yesterday. So my verap preventative hasn't had the time to gather a foothold.

My Imi is 100mg pill form. But with my 15 min-1/2 hour foreshadow I generally only suffer for 15 min to 1/2 an hour before it takes hold. My employer has no issue with my going into the storage room and sitting down on a recliner I brought in, rocking, moaning, and squeezing my skull as tight as I can until the pain disappears and I pass out for about an hour. I can't do needles. Not that I don't want to, I simply can't. I am not wired that way Wink

I am interested in the O2 treatments, however, and I may still discuss them with him. I have read a lot about O2 therapy on here and it is an option I will not discount so rapidly next time. But in all seriousness, I hope (just as everyone who suffers hopes) this shit just goes away again soon.

But I am glad to say I didn't get hit last night at 2am, as I have been getting hit. So we will see what the day holds in store for me. I saw that naps can trigger attacks too, so I will avoid my lunchtime nap (my employer also encourages this, as it leads to greater productivity) and see if I can hold the beast at bay for my typical 1:30pm hit as well.

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DArcy

CH.com Newbie

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I Love CH.com!

Posts: 16
Sudbury
Gender: male

Re: Hello
Reply #10 - Jul 30^th, 2008 at 10:45am

Hello Sandt38,

I'm new here as well, but welcome from another newbie! One thing you wrote... "There are so many people worse off in the world then me with my headaches." (Sorry I'm not familiar with doing quotes on here). I've always thought of it that way, my little nephew was born with degeorge syndrome, multiple heart surgeries, constant care and has been close to death many times..etc. My family worries about me, but man...I don't feel worthy of taking up any of their sympathy or worrying when people like my nephew are around. Thats including my sister, I'm lucky to have a caring family.

Cheers and good to meet you.

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Kevin_M

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withered branches grow
green again.

Posts: 8754
Michigan, USA
Gender: male

Re: Hello
Reply #11 - Jul 30^th, 2008 at 11:09am

sandt38 wrote on Jul 30^th, 2008 at 10:36am:

I don't think I can do more verap.

... my verap preventative hasn't had the time to gather a foothold.

There has been side effects. I find when first starting a med the side effects can be more pronounced, in time less noticeable but it is a personal choice to continue.

That is true. Patience for now on preventative but it may come just as it did last time.

Quote:

My Imi is 100mg pill form.

This is not a useful type of trex for cluster sufferers, the full duration of pain is felt most likely before it can begin to help. As an inbetween form there is the 20mg nasal spray, much faster than any pill. Oxygen would be a big improvement too over a trex pill, we're talking 10 minutes time and less for some setups.

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BarbaraD

CH.com Alumnus

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Hugs to ya

Posts: 8333
Douglasville, TX
Gender: female

Re: Hello
Reply #12 - Jul 30^th, 2008 at 2:35pm

Welcome to Clusterville. sorry you had to find us, but this is the place to be for Clusters. You'll find that the folks here UNDERSTAND exactly what you're going thru and what you're feeling. We come here to vent, share our pain, share our victories over the demon and just support each other.

What the others have said about the O2 I concur with totally. My O2 tank is a part of my family. I have my prevents and aborts, but the old standby is sitting right here and at the ready when the demon comes a-visiting. It's my first line of defense. Most of the time it works (nothing is perfect as you well know).

Again, welcome to our family (and you'll find we ARE a family). Pull up a chair and sit a spell. Read, read, read.... there's years of advice here.

Hugs BD

What don't kill ya, Makes ya stronger!

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Karl Ex Member	Re: Hello Reply #13 - Jul 30^th, 2008 at 9:03pm I can relate to having them hit at work and I always love the comments like "oh I had a migraine once". that just makes want to scream or walk away. I know they only are trying to relate but seriously!!!! Karl
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mezza

CH.com Alumnus

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I love YaBB 1G - SP1!

Posts: 415
north carolina
Gender: female

Re: Hello
Reply #14 - Jul 30^th, 2008 at 11:22pm

Sandt-

Thanks for the reply. Its great to know about other 'in the know' docs in the triad area. The neuro I see is actually in Winston Salem- almost an hour drive for me but well worth it for the relief and support I get. If you get a chance to link to the Ouch Website and join up- add your doctors name to the site- It may help others in your area find the support the need and the right treatment!

Wishing you more pain free times!

kelly

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CH Ron

CH.com Newbie

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PF wishes to all!

Posts: 21
San Diego, CA
Gender: male

Re: Hello
Reply #15 - Jul 31^st, 2008 at 2:03am

Sandt,

A warm welcome to you! PF wishes my friend, I really wish you didn’t have to be here!

You mentioned that you get a constant headache from the verapamil and I’ve got a question for you… What kind of headache? Ice-pick/pressure between the eyes? Pressure in the forehead?

After my last cycle I never went off of the Verap since I couldn’t read my body. I had this constant headache and I was describing it as a shadow (or dull cluster) so of course we were playing with the word chronic. Now that I’m truly in a cycle I believe that the headache was actually a side effect of the Verap.

I know O2 sounds like a hassle, but just about everyone here swears by it and I trust these people. I have an appointment with my neuro to discuss it next week and I’m going to try it.

I just tried melatonin and I’m sleeping through the night. Believe it or not this stuff can actually chain the beast for the evening. At least it does for me and I truly believe it has changed my life. The pills are usually 3mg and you should work your way up to 12-15mg. I’m at 9mg (will take 12mg tonight) and I’m finding it effective without making me groggy in the morning.

Sounds like the Beast has the same schedule with you as it does with me… aprox 1PM and 1AM.

I wish you well finding your silver bullet!

Ron

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sandt38

CH.com Newbie

Offline

ouch

Posts: 19
North Carolina
Gender: male

Re: Hello
Reply #16 - Jul 31^st, 2008 at 8:30am

Kelly-

I will be certain to add him to ouch this evening. He seemed to be quite informed about clusters, and knew about alternative treatments as well, so i will be glad to share his information.

CH Ron-

It is a constant pressure between the temples. I wouldn't call it a shadow, because it affects the entire frontal region of my head, not just one side, like my foreshadows do. It seems to me like I had this same HA the last time I used it as well, for the first few days. It has actually faded to a dull throb this morning, and I don't feel the need to use the Excedrin I have been using to tame it at this time.

And I was fortunate to be PF for the last 24 hrs, at least from the beast. I can't say the same about my back and the Verap HA Wink

, but those little pains I can live with.

DArcy-

Exactly my thinking. One of my former co-workers had a 6 year old niece who had some rare lymphatic cancer. She was in constant pain and on her deathbed for 3 years. I am sad to say she passed away about 3 years ago. Her pain at her age, and her families pain of losing a child, particularly one so young, seems to make my whining over my 90 minute bouts seem so petty. I have a healthy family, a good job, a nice home, and only episodic CHs... I think I have a lot more to be thankful about then I have to complain about. It is all about perspective.

I don't want to leave anyone out, so I say thank you to all of you who have taken, and will take the time to welcome me, and to share your advice of how to tame the beast.

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CH Ron CH.com Newbie Offline PF wishes to all! Posts: 21 San Diego, CA Gender:	Re: Hello Reply #17 - Aug 5^th, 2008 at 12:19am Sandt, Thanks for the reply. Sounds like your verap side-effect headache is similar to mine and this is something I’m discussing with my doc. Verap works for me although it does make it tough to read my body. Slowly I’m figuring it out and your reply has helped. Thanks again and PF wishes to you, Ron
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