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        Cluster Headache Help and Support >> Medications, Treatments, Therapies >> the demon is back
        
(Message started by: phil098342wq on May 11^th, 2007, 5:20pm)

Title: the demon is back
Post by phil098342wq on May 11^th, 2007, 5:20pm

I have been having some minor chs here for a good week and Wednesday, the day of my college grad I became very sensitive to light, a sign. But i was able to control it. Last night I had a #9 and almost went to the ER. However my insured hospital is about 25 miles away. I would have to have someone come get me then take me there, in afternoon rush hour, it would take anywhere from 1-2 hours to get there. Has anyone called an ambulance for CH? I am insuried through Kaiser and they recommened it when I was having trouble breathing due to broncitis, but like an idiot I drove.
I am also pushing my doc for o2, I just got insured a couple of months ago. I did get the injectable imitrex, and was grateful just for that. I have tablets for the nausea. I use ice packs and dark rooms. just got a new vehicle with great air cond. What more can I do? I have been lax in treatment because my preventative, Valproic Acid has helped so much. Its time for me to take back control of my life and chase the demon away. Any advice would be helpful.

Title: Re: the demon is back
Post by phil098342wq on May 11^th, 2007, 5:35pm

I also wanted to know if anyone else has sight problems, and or problems with light connected to chs.

Title: Re: the demon is back
Post by Guiseppi on May 11^th, 2007, 6:00pm

I'm a Kaiser patient too, not sure they'd authorize an ambulance as it's not "life threatening" but then again I've never asked!

Push HARD for the 02. I'm in San Diego and once Kaiser approved it I got 8 E-tanks delivered to my house. When I've got several empties I just call Apria and they swap me out. It's the greatest when it comes to abortives.

I don't recognize the other stuff you take so I can't comment. As far as light sensitivity, when I'm getting close to getting hit or in the early stages, I'm not sensitive to light so much as it just pisses me off, makes me deep down angry. I've seen several others post about different types of light sensitivity when on cycle. Welcome to the nut house and keep asking questions.......and get that oxygen!

Guiseppi

Title: Re: the demon is back
Post by Linda_Howell on May 11^th, 2007, 7:20pm

Guiseppi and me and a lot of others look at our 02 tanks with a sort of affection, bordering on love. ;)

Have you been diagnosed with cluster headaches? Because from the sound of your symptoms it really doesn't fit. Sensitive to light, needing a dark room, nausea....

The Valproic acid you are taking:

Valproic acid and divalproex are used for the treatment of seizures, bipolar disorder and prevention of migraines. Depakote extended- release (ER) is used 1) for the prevention of migraine 2) as sole and adjunctive therapy for complex partial seizures in isolation or in association with other types of seizures and simple and complex absence seizures in children with epilepsy ages 10 and above 3) for the treatment of acute manic or mixed episodes associated with bipolar disorder.

could be taken for Migraines, which doesn't mean much because Imitrex and a lot of the drugs we take for Clusters were first used for Migraines.

Please write back as I am curious if you were diagnosed correctly, or at all.

Linda

Title: Re: the demon is back
Post by shaktima on May 12^th, 2007, 12:54am

Have you tried Red Bull? I know I was skeptical til I tried it, but it can't hurt. Get a 4-pack, and take at first sign of CH. For me, it aborted a major hit within 20 minutes!
Hoping you get some relief,
cathy

Title: Re: the demon is back
Post by Skyhawk5 on May 12^th, 2007, 2:18am

I become extremely sensitive to light and sound during bad hits and sometimes during shadows on my CH side. Also will throw up if I don't have my meds. Older research says these symptoms are rare in CH but now it's not considered so unusual. So no you are not alone.

Best of Luck, Skyhawk5

Title: Re: the demon is back
Post by phil098342wq on May 12^th, 2007, 3:06pm

My symptoms don't follow the norm a lot of the time as Linda points out. Let me tell you how I was diganosied. It was finals week May 2004. I am a 24 year old male. I had intense eye pain for two days, unable to sleep. I had to make an urgent appointment to be seen by my doctor. Lucky for me she was not too far away from the college. However after doing every test she could, she thought I had a torn retna and sent off as quick as I could to the ER.
There they too focused on the eye, partly because of her phone call. Finally after an hour and a half the doctor came back in the room with a nurse and a second doctor and said he thought he knew what was wrong but wanted to try something. I agreed and the nurse put an IV in me, and stayed standing behind me. The doctor said they were going to numb the eye to see if I felt anything. This sounded stupid but again I agreed. They put in some eye drops on the left eye and then the doctor said do you feel any- and that was it. I might of screamed, I can't rememebr. I fell out of the chair flat on the floor. The nurse was scrambling to inject the imitrex and the doctors were trying to get me back in the chair and my grandmother who was witnessing this was running out in the hallway causing even more panic.
Looking back I do not agree with their method but it worked. The stabbing pain in the left side of my brain was the final clue they needed and it only took a couple of minutes for the imitrex to take hold. There is no doubt I have CHs, I also have migrains. They just don't fit the norm.
Some days I have more nausea than pain. Some days more pain. Some days the imitrex makes it all worse, some days it makes it all better. I developed these damn things after starting college on computers for drafting, and the computers and flourencent lights are my triggers. After being out of school to recoup for a couple of days I returned. I had sunglasses on and when I entered the school I took them off only to be driven to the floor by the lights. It has now progressed to me having to wear glasses, and I have anti glare on them.
For me the biggest fear I have with doctors diganosing CHs are that there is sometimes not a set pattern of symptoms. Some people fit the mold, some break it. I just wish I wasn't here, (in the chat room). I have had this round of CH, with little let up since Thursday evening. I was suppose to be on vacation. Last night I passed out around 7 and did not come to until 1 am. I am just now getting around to "living" today.
Thanks for the comments and sugs.

Title: Re: the demon is back
Post by ducaro on May 12^th, 2007, 10:30pm

hey

Sounds like yer CH is carrying traits of a migraine.

Anyway, whats yer alcohol consumption like?? do you drink, and how often??

If you really want to get rid of yer CH.. trust me.. this has worked for me.. give up alcohol completely.not even beer!! the other thing for i realized is i got an attach everytime i ate cheese! i know!

i have been suffering for 4years now and when i gave up alcohol, the Ch comes but it measures a mere 2 on the kipscale. :)

Title: Re: the demon is back
Post by ClusterChris on May 13^th, 2007, 9:43am

OK i just commented on your last post ducaro. You can't keep running around the board telling people to stop drinking alcohol. You are misleading people. Please stop. It has only been one year for you which is nothing as far as a true trial. I quit smoking and went pain free for 2 years. Then they fired back up again. I did not go around telling everyone to quit smoking!

Thanks
Chris

Title: Re: the demon is back
Post by phil098342wq on May 13^th, 2007, 4:53pm

ducaro you may have a point, but I agree with Chris. However let me point out that anything our bodies take in, our bodies have to digest, and either use or dispose of. In my case I am on Valproic Acid, I do not want to over tax my liver so I hardly drink. Besides that I like to drink out when I do, and I above all do not drink and drive. I have maybe three drinks a year. New Years, Christmas and a funeral.
Okay now that that is out, does any else feel tired all day from the demon, this is not normal for me and may call my DR in the morning.

Title: Re: the demon is back
Post by phil098342wq on May 17^th, 2007, 12:12pm

Got the call last night, oxygen being delivered today-finally.

Title: Re: the demon is back
Post by testy01 on May 17^th, 2007, 5:59pm

OK, just my two-cents worth. I have been diagnosed with CH.

When I get hit, bright lights bother me. They don't really make the pain any worse but I do tend to avoid them. My ideal place is somewhere very cold and dimly lit. I don't like complete darkness either because then I can't pace the floor. Sound doesn't really make a difference either way.

Hang in there

Jack