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OmfGmhh
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New Member, suggestions for Medical research
« on: Jun 2nd, 2003, 12:20pm » |
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HI.
Had Cluster HAs since 1995, every spring or summer.
around 12 am every night for 2-3 weeks.
I wake up with what feels like a muscle cramp, but its in my right eyelid.
It then proceeds to introduce me to its friends, who are in order of appearance; headache 100x worse than any pain ever experienced before, tearing eye, running yet congested nose, photosensitivity, naseau, sweats, and lastly the my-face-is-sliding-off numbness.
Started last night, so I know I have about 3 weeks of sleepless nights, and since I cant get into the Dr untill tomorrow, i know tonight is just gonna be one of those "I hope Im strong enough" nights. 
Now I dont mean to give you my full medical history here, but just a couple of things to think about. I hold 2 bachelors of science, one in critical care nursing, the other in computer science. The scholar in me has brought me to think, "what if" on a couple of subjects. If i wasnt so damn lazy, i'de do the research myself =)
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I have also been diagnosed with Bipolar II disporder. If im speaking Greek now, its a phycological condition, very close to Bipolar disorder, but it tends to run in cycles, like seasons or calenders. It gets worse in the spring and fall, just as most CH sufferers see their episodes in spring and fall.
Has anyone ever researched for a link between other disorders of the brain-nervous system and cluster HAs?
Its just to coincidental to see so many nervous disorders that seem to follow the same seasonal calendar as CH. Granted not everybody who has CH has a seasonal calendar, but the majority do, as do the majority of other nervous disorders.
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SO, Long story short, suggest it you your Dr, maybe someone knows a med-student or wanna-be neurologist that could win the Nobel prize for medicine and cure CHs and Bipolar disorders.
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TomM
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Re: New Member, suggestions for Medical research
« Reply #1 on: Jun 2nd, 2003, 12:33pm » |
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OMGMHH--Welcome to the forum.
I have not heard of a correlation but that does not mean it does not exist.
What meds do you take for BPII disorder?
One flag in your symptoms; naseau. ??? IMHO.
TomM 
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oringkid
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Re: New Member, suggestions for Medical research
« Reply #2 on: Jun 2nd, 2003, 12:49pm » |
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LMAO! I truly thought I was looking at a new symptom
"naseau" Took me looking it up to realize it was nausea! lololol! Sorry...ehem....
Welcome omgmhh! Light sensitivity and nausea are not normally part of CH. Most of the people here who have those symptoms also tend to have migraine. Also, I have never had the numbness in the face...
Anyway, checkout all the info to the left. Lot's of great info here.
I recently read of someone else here who has bipolar disorder and thinks there may be some correlation.
I remember that some, a long time ago were wondering if there was some correlation between CH and .... I think it is called SAD? That depression disorder that is seasonal?
Only thing I have that tends to be seasonal is CH and mild allergies.
Sherry
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CJohnson
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Re: New Member, suggestions for Medical research
« Reply #3 on: Jun 2nd, 2003, 1:43pm » |
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Some factors to consider:
An anomoly in circadean rhythm is considered to be factors in both CH and Bipolar II.
Hypothalamus regulates circadean rhythm.
Serotonin thought to play a significant role in both phenomenon.
Low serotonin levels stimulate the trigeminal nerve which induces the release of certain neuropeptides.
High levels of certain neuropeptides are present in the hypothalamus in Bipolar II.
PFDANs
-Curtis
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OmfGmhh
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Re: New Member, suggestions for Medical research
« Reply #4 on: Jun 2nd, 2003, 2:34pm » |
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Ya. I realize that Nausuauseausausesua and photosensitivity are not textbook symptoms in every diagnosed case. But its always there for me. Nauseauuseauseeaasueuesa but never vomiting, my eyes are always fairly light sensitive, maybe just more so due to the HA. Just secondary symptoms. But then again, EVERYTHING (breathing, opening my eyes) seems secondary compared to exquisite sensations flying up and down my optic nerve when im the throws of passion with "the devil" or "the beast".
Just echoing some of the points brough up so far by CJohnson - Both CH and Bipolar disorders have been linked to circadean rhythms, which appears to be regulated by seratonin and melatonin, both of which are regulated by the hypothalamus. Selective Seratonin Reuptake Inhibitors (SSRIs) such as Sertraline and Prozac have been used to treat Bipolar disorders.
And the Punchline...
I didnt have a cluster period for the past 2 years, coincidently I WAS ON SERTRALINE for the Bipolar disorder for those 2 years. Stopped it last fall. Was PF (and a$$hole free =) ) since then untill last night.
Not looking for an epiphany here, just wondering... Anybody else have problems with CH and Bipolar disorder, OR anybody have simelar experiences with the use of SSRIs to treat other disorders, when their CH just failed to make its scheduled appearence?
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TomM
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Re: New Member, suggestions for Medical research
« Reply #5 on: Jun 2nd, 2003, 2:52pm » |
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I know I'm a freak because my HA's have switched sides but never during an attack or cycle. I went from left to right to left; three different cycles.
I am ALWAYS sensitive to light. I've had meegraines so I know the difference. The two are similar but different. Not to take this down a rude path, but similar to breasts on men vs. women. Both are breasts but very different much like both are HA's but different.
Interesting about the Sertraline. Now I understand your inquiry.
TomM
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jonny
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Re: New Member, suggestions for Medical research
« Reply #6 on: Jun 2nd, 2003, 3:01pm » |
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Lithium loves me and I love her ;D
...........................jonny
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don
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Re: New Member, suggestions for Medical research
« Reply #7 on: Jun 2nd, 2003, 3:09pm » |
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Quote:Not to take this down a rude path, but similar to breasts on men vs. women. Both are breasts but very different much like both are HA's but different.
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LMMFAO. Never thought of it that way but it's a damn good analogy.
My HAs are much firmer and perkier than yours!
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CJohnson
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Re: New Member, suggestions for Medical research
« Reply #8 on: Jun 2nd, 2003, 3:11pm » |
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Robbins Headache Clinic
Aug. 1999
Miscellaneous treatments for chronic clusters are the same as for episodic clusters: phenelzine (Nardil), cyproheptadine (Periactin), nifedipine (Procardia), beta blockers (propranolol, nadolol, SSRI's and Ritalin). These are occasionally helpful, and are discussed in the preceeding section on preventive medications for episodic clusters.
http://www.headachedrugs.com/archives/preventivemeds.html
PFDANs
-Curtis
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Ree
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Re: New Member, suggestions for Medical research
« Reply #9 on: Jun 2nd, 2003, 5:47pm » |
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I only have 2 things to say... Welcome... and God begins with a Capitol G thanks... ree
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Charlie
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Re: New Member, suggestions for Medical research
« Reply #10 on: Jun 2nd, 2003, 6:25pm » |
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Welcome aboard and you'll find a ton of good ideas and ways to better manage this horror. Give us a looksee.
For my part, I'm an epileptic, somewhat light-sensitive and very sound-sensitive....some epileptics are....Of course it's been 12 years since my last attack but the damn seizures are still there. I wanna trade. Beats me it this means anything though.
Stick around and let us know how you're doing.
Charlie
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eyes_afire
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Re: New Member, suggestions for Medical research
« Reply #11 on: Jun 2nd, 2003, 6:26pm » |
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Hi OMy. I have tried Zoloft, Serzone, and Paxil (all SSRI's). None of them ever did anything good for me. I still got CH while taking them. Getting off Paxil.... GOD THAT WAS HORRIBLE. Bad sick for a month. A friend nearly had me hospitalized. One of the few times in my life I was physically unable to reach the telephone.
--- Steve, one of many...
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gene
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Re: New Member, suggestions for Medical research
« Reply #12 on: Jun 2nd, 2003, 10:24pm » |
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Hi OMG,
Welcome from another newbie! I'm sorry you are going into a cycle. Mine started about 2 weeks ago.
Re: switching sides/ I typically get migraines a few times a week when not in a ch cycle. They are ALAYS on the right side and 1/50th as painful as a ch.
Then Disaster, I'll feel a shadow starting on my left side and Here comes 4 to 8 weeks of ch nightmare.
For the first 10 years of ch, they appeared every year or other year mid Dec. I lived in so Cal then NYC. I've moved to Portland Or and now they come in May??
Sorry no help with your bi-polar disorder
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oringkid
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Re: New Member, suggestions for Medical research
« Reply #13 on: Jun 3rd, 2003, 12:33am » |
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Sorry about the nausea/naseau thing LOL! I was truly laughing at myself!!
I wish I could remember whether I was due for a cycle when I went on Welbutrin for depression but I can't, however, it might have been the beginning of my skipping 2 years instead of just one.... but I can't be sure.
I'm one of those freaks that kinda tries to put the CH behind me when it goes so I've never paid a lot of attention to dates and what I was doing/not doing etc. Maybe now, I will pay more attention. However, I don't take any other meds now.... Doc gave me Paxil to try for my anxiety attacks once, one of those starter kits, when he told me that one of the side effects was inorgasmia I decided not to even try it LOL! I'll just deal with the anxiety 
Sherry
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pimmony
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Re: New Member, suggestions for Medical research
« Reply #14 on: Jun 3rd, 2003, 2:15am » |
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WE were speculating about this on chat the other night.
My understanding is far more naive, so forgive me. I understand that high levels of serotonin inhibit the production of melatonin and, because I was on Cypramil (SSRI) for some months it is possible that I did my melatonin production some good.
However, the downside is that I was on Cypramil for good reason and that was bad (  ) and it messes with short term memory and that is bad too, mkay?
Fraid I get lost after .... here comes the technical stuff....
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OmfGmhh
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Re: New Member, suggestions for Medical research
« Reply #15 on: Jun 3rd, 2003, 11:56am » |
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Well, i lived through another attack last night. Another 1 hour 45 minutes of fun and games.
Day 2 of a +/- 20 day cycle. Seems the "shadow" is hanging around all day this time. Have the tears in my eye, just one side stuffy nose and slight nauseua all day. But not the full blown HA, first time for that...
Go to see a new physician today, I hope he knows what the hell im talking about. Suggestions for talking to a new physician about it?
Now... whats everybodys best way to LIMIT a HA once its occured. Like take it from 3 hours to 30 minutes?
The Imitrex injection? Is it just sub-Q like insulin or IM like tetanus? Most importantly DOES IT WORK???
Im afraid to sleep tonight if something drastic doesnt change.
-- OMFGMHH.
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aprilbee
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Re: New Member, suggestions for Medical research
« Reply #16 on: Jun 3rd, 2003, 12:45pm » |
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I can't remember ever having a 3 hour CH, about an hour and a half is the longest one I can remember having,
Hot, hot showers with ice packs work well for me, after I've taken my meds of course(imatrex is what I usually use)that gets rid of it for me, but then a couple hours later, WAM I have to start the process all over again. (its murder on my hair lol )
Seriously though, I think everyone is different, experiment with ice packs, hot showers, exercising and meds and see what works best for you.
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CJohnson
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Re: New Member, suggestions for Medical research
« Reply #17 on: Jun 3rd, 2003, 12:47pm » |
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on Jun 3rd, 2003, 11:56am, OmfGmhh wrote:
Now... whats everybodys best way to LIMIT a HA once its occured. |
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I can almost always abort an attak in 5 - 30 minutes if I go running as soon as I feel it coming on. Also keeps the pain from getting to k-9+. Imitrex injections abort them for just about everyone in less than 30 minutes.
on Jun 3rd, 2003, 11:56am, OmfGmhh wrote:
Im afraid to sleep tonight if something drastic doesnt change.
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Drammamine taken before bed can get you through the night by keeping you out of the REM phase of sleep, which is typically when they strike. It has worked for myself and others
PFDANs
-Curtis
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oringkid
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Re: New Member, suggestions for Medical research
« Reply #18 on: Jun 3rd, 2003, 3:16pm » |
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To add to Curtis' post, make sure it is the regular Dramamine not the Dramamine II (non-drowsy formula)
I use ice packs and hot black coffee. Try ice on the bottom of your feet. It has aborted a few for me.
Sherry
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Mark C
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Re: New Member, suggestions for Medical research
« Reply #19 on: Jun 3rd, 2003, 3:57pm » |
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Been suffering from depression and CH for most of my adult life. I have been treated with just about everything mentioned in this post so far and then some, for both ailments. I believe that CH and depression are related, however the treatment for one seems to have no effect on the other, except for Imitrex making me joyfull when it works!
Study on oh smart people!
PFDAN's
Mark
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don
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Re: New Member, suggestions for Medical research
« Reply #20 on: Jun 3rd, 2003, 9:33pm » |
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The imitrex is sub-Q and is the only thing that has ever worked for me. Check the imitrex tip on the left.
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OmfGmhh
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Re: New Member, suggestions for Medical research
« Reply #21 on: Jun 4th, 2003, 3:00pm » |
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Well in case you really give a rats ass...
I went to the Dr yesterday, and lo and behold HE GETS CHs!!
So much for trying to describe it to him =) He said he has been in remission for 3 years but still keeps imitrix at the bedside.
Needless to say he was wonderfull, understanding and even threw out a few suggestions I hadnt heard. The biggest of which is the antihistmine CLARITIN MAY BE A TRIGGER!
So... anybody else ever heard that? or anybody take claritin and have CH? Just be advised.
So i paid my $15 for a imitrex 2 dose system and went to bed. (10:45pm)
Woke up doing the Desperation Samba at 12:15 am.
Fumbled with the goddamn syringe for 10 minutes...
Autoinjected at about 12:30 am.
HA was a 5 at 12:50, and never got to my usual 9-10 on the kip. By 01:15 I was back in bed and ready to sleep again.
So Long story short, My usual 2 1/2 hour rank 9/10 HA became a 1 hour rank 5 with the use of the autoinjector.
I would call that a very successfull treatment. =)
I dont think ive said this before, but THANKS GUYS!
A support group is very helpfull for this.
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