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Topic: New Clusterhead (Read 292 times) |
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jgrave
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New Clusterhead
« on: Nov 10th, 2004, 6:35am » |
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Hello everybody. My name is Justin. I live close to St. Louis, MO and I have cluster headaches. I'm glad that there is a site out here for those of us that have this problem.
My Story (not much of a read)
I got my first cluster headache halfway through my junior year of college. I came home for the holidays to see my family and couldn’t get past the pain in my neck and the back of my head. I decided that I needed to see a doctor. I went into the office and instead of my normal doctor, I saw a physicians assistant. He took my blood pressure and looked at me weird then took it like four more times. I thought this was strange. He later that afternoon told me that I have high blood pressure. I was only 20 years old at the time. I was freaked out because I didn’t want to be taking medication for BP at such a young age, but what do I know.
I took BP medicine for almost 5 years until one day I passed out, started having chest pains and a numbness. My fiancée (a nurse) said that was going to the hospital....I agreed. Of course, once you get to the hospital and you walk in, you are not considered a problematic case. I sat in the waiting area for over an hour and a half. Turns out, the BP medicine was lowering my BP and causing me to pass out. I have labile BP, meaning that it varies from normal to high all the time. I stopped taking the BP medication and then the problems started again.
Last November through December, I was having the worst headaches. I went to the doctor and she made me keep track of when they happened and what I ate. I was unable to make a connection between anything and the headaches. The doctor then mentioned the cluster headaches and recommended I take Tylenol Migraine immediately when feeling the effects.
Last night (afternoon, I work nights), I woke up with my first headache of the season, just like last year and not much different then six years ago. I feel better when I stand up and I wish that I had a constrictive head casing that would squish my brain....that feels better too!!! I feel like I stress out a bit knowing that these headaches are around the corner. I grit my teeth in preparation for another episode.
My Questions
1) I am wondering if anyone else noticed the correlation between blood pressure medication and CH.
2) Does anyone have more problems when lying down?
3) I tend to lose a little vision in my left eye.....happening as I type.
4) Tylenol Migraine doesnt help much at all for me? Anyone else?
I hope to chat with some of you about your issues and learn as much as possible about this painful illness.
Thanks for your time. Also thanks for the person that started this forum.
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Filbert
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Re: New Clusterhead
« Reply #1 on: Nov 10th, 2004, 7:04am » |
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Hi jgrave sorry you have CH but welcome to the message board!
Answers:
1 During an attack blood pressure rises. One of the most common preventative meds prescribed for CH verapamil is primarily used for people with high blood pressure.
2 Most people find it almost impossible to lie down during an attack. Indeed agitation has been added as a way of diagnosing CH.
3 Not too sure on this one I think a few people do.
4 I don't think it helps many people.
Hope this helps a little.
All the best Filbert..
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BobG
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Re: New Clusterhead
« Reply #2 on: Nov 10th, 2004, 2:31pm » |
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Welcome to the site Justin.
1. Not for me. I have never suffered from neither high nor low blood pressure.
2. Absolutely, positively, no doubt about it Yes.
3. Yes, because the eye is tearing and the lid is closing. But, if you mean going blind then no.
4. Used to eat OTC pain killers by the handful. Never helped at all. Prescription pain killers probably won't work either.
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Stay stressed. Never relax. Never sleep. Ever.
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Ronny
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Re: New Clusterhead
« Reply #3 on: Nov 10th, 2004, 4:58pm » |
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on Nov 10th, 2004, 6:35am, jgrave wrote:I stopped taking the BP medication and then the problems started again.
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Hi,
That is very likely. Most of us get BP lowering meds as a preventative.
Ronny.
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| « Last Edit: Nov 10th, 2004, 4:59pm by Ronny » |
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Margi
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Re: New Clusterhead
« Reply #4 on: Nov 10th, 2004, 5:07pm » |
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Hi Jason,
yes, the blood pressure thing is very common among clusterheads. Did you stop taking your meds suddenly, or did you taper down before you stopped? VERY VERY dangerous to quit b/p meds cold turkey!!
As to the vision thing....if you are seeing silver spots (similar to a heat wave) or it feels like you have lost only part of your vision in one eye - the "spots" are called phosphenes. It's actually happening in your brain, not in your eye - that's why, when you close your eye you can still "see" the spots. It's very disconcerting, I know. However, that is more indicative of migraine activity than cluster.
I tend to wonder about a doctor's knowledge of clusters if he suggested you try Tylenol Migraine. Over the counter meds will NOT do a thing for cluster. I'd sure suggest you get a second opinion.
If you do have cluster, ask for a prescription for Verapamil (it's a b/p lowerer too - is that what you were on?) It really has helped a lot of clusterheads stay out of cycle. Also, try oxygen - GREAT abortive!
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thebbz
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Re: New Clusterhead
« Reply #5 on: Nov 10th, 2004, 9:11pm » |
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Hello and welcome
Tylenol meeegaiiine..  LOL, cup of coffee would be better.
Visually incapacitated
Couldn't lie down on a bet.
Tell us more, what else do you have to abort? Been to the neuro lately? ect....I decided that I needed to see a doctor. I went into the office and instead of my normal doctor....a PA is hardly one I would trust.
Here's a good book, Rappaport , Conquering Headache
fourt edition...lots of good readin.
BB
BTW: Hang in there Justin Correct name ??? Boy am I a dumbass. I mean Jason
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| « Last Edit: Nov 10th, 2004, 9:13pm by thebbz » |
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jgrave
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Re: New Clusterhead
« Reply #6 on: Nov 11th, 2004, 3:00am » |
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Thanks everyone for all the replies!!
I was on Atenelol for BP. The doctor told me to just stop taking it because
1)My blood pressure was never high when it was taken
2)It was making me nearly passout when standing up and other basic life functions.
I think that my headaches come and go infrequently enough for me not to be able to track them down. Before going to bed this morning after working all night I proactively took a couple Advil. I read that it doesnt help anyone with CH but I thought I would try. The headaches didnt occur like that have the past two days during my sleep. Maybe I got lucky.
I fear that if I start trying to medicate too early with the CHs that I will start causing more problems. After needing to take BP medication for 5 years it makes me leary to start taking anything regularly again.
Will keep updating.
Thanks again!!
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PerryGR
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Re: New Clusterhead
« Reply #7 on: Nov 11th, 2004, 4:10am » |
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Hello Justin,
Welcome to the boards- sorry you're in pain.
I hope you don't mind my asking this but you wrote:
on Nov 10th, 2004, 6:35am, jgrave wrote:| couldn’t get past the pain in my neck and the back of my head. |
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Are these the only places you 're hurting while having a headache? Do you have any other symptoms accompanying your headaches?
Taking the "cluster quiz" on the left would be a great place to start and i'm with Margi about getting a second opinion.
PFDAN to all,
Perry.
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Haven't posted in a while so let me re-introduce myself... Male, 25y.o., CCH sufferer for a little bit more than 5 years. Verapamil and Lithium seem to work well at the moment.
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Kris_in_SJ
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Re: New Clusterhead
« Reply #8 on: Nov 11th, 2004, 8:51pm » |
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Hi Justin - Welcome.
I have two bits of advice for you (OK - maybe three).
First, get to the doc - preferably one knowledgeable about cluster headaches - Tylenol Migraine?!?!?! - No cluster doc I know would ever tell you to take OTC meds for CH.
Second, you might want to try Melatonin before bed. It's inexpensive, OTC and helps many people who have HA's at night. You'll find it in the vitamin/supplement area. There are many threads here about it ... do a search.
Third - read, read, read! Take the quiz on the left, read the medical info. Then print it all out and take it with you to the doctor's appt. you're going to make. Include this article. It was a lifesaver for me:
http://www.future-drugs.com/admin/articlefile/ERN020304.PDF
Hugs and Good vibes,
Kris
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RandyB
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Re: New Clusterhead
« Reply #9 on: Nov 12th, 2004, 8:05am » |
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Hey Justin I am new here too. I too was once on Atenelol but mine was prescribed to stop the CH episode. Not too sure if it worked as I was on the way down from a 4 mo. cycle anyway. But I stoped taking it after a month, cause I would lay their in bed thinking my heart was about to stop  . that stuff I did not like. I am with everyone else it sound like you got some real hard pain could you describe it in more depth or take the quiz for yourself
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angel-ache
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Re: New Clusterhead
« Reply #10 on: Nov 13th, 2004, 12:54am » |
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Hello justin-
Evil things aren't they...
1 My blood pressure is really good, even on the low side. I have had my bp taken while experiencing a bad ache and still it was very good.
2 I definately have a problem laying down when I am suffering. When I was at the ER, they tried to make me lie down, they thought I was going to faint, I told them that was the last thing I was going to do, so far from it. I like to squat next to a counter, bed, table and pull my weight up to the table and also lean backwards, side to side, on and on while hanging from whatever.
3 I get droopy eye, like to side of my face lost feeling and muscle control. I especially hurt in my sinus region. It hurts so bad to breathe through my nose as soon as a headache starts (first indicater) and through out the ache, and I know when it is over when I can again breathe through my nose. Meanwhile I get the nasal drip.
4 No
Keeping asking questions, and someone will always be around to answer. Chin up.
Angela
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"We gather strength from sadness and from pain. Each time we die we learn to live again." Unknown Author
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