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        New Message Board Archives >> Medications, Treatments, Therapies 2003 >> Hello ... Triggers? ... Spinal Tap?
        
(Message started by: jchrisb on Sep 25^th, 2003, 7:26pm)

Title: Hello ... Triggers? ... Spinal Tap?
Post by jchrisb on Sep 25^th, 2003, 7:26pm

Hi everyone. I just found this site today and am so glad to see that I'm not alone in this boat. I'm from Nashville and apparently these aren't so common around here because no one I've ever talked to seems to know what they are - I work for a pharmacy and talk to a few hundred people a week and I have never met another person who suffers from them. I've had CH for four years now, no remission, 2-3 a day. On a good week I might get by one day without one.

A little history if I may - I have been prescribed Elavil, Prednisone, Depakote, Verapamil, Indocin, Topamax, and Neurontin as preventatives - none worked longer than two weeks and some even made them worse. I've used Migranal, Maxalt, Zomig, Frova, and Imitrex (50mg, 100mg, nasal and injection) as abortives. Only the Imitrex injection works now. Fortunately my neurologist lets me pick up samples from him on a regular basis since my insurance only pays for one box per month (I get 12-15 boxes a month from him). I've had 3 MRI's and 4 CT's in the past four years.

Anyway, I'm wondering if any of you have found specific triggers that commonly bring on your CH? I have kept a diary for the last couple of years and other than strong odors and very warm temperatures, I can't figure out any specific triggers. Do any of you find that continued exposure to warm or hot temperatures causes them to start? This is common for me - I keep my home at 65 degrees all the time and freeze my wife to death. But if I don't I'll get one for sure. Mine are most common in the early morning, the late afternoon, late evening, and when I sleep.

When I told my neurologist yesterday that the increased dosage of Verapamil (240mg) was causing CH in greater frequency (4-5 a day), he told me he wanted to have a spinal tap done. Have any of you had this procedure directed by your doctor? If so, what was he looking for and did he find anything?

Sorry if I'm a little longwinded or if I have asked questions that have already been answered on the board. I have been reading your posts for hours. Any guidance you have to offer would be most appreciated.

Thanks!
Chris

Title: Re: Hello ... Triggers? ... Spinal Tap?
Post by floridian on Sep 25^th, 2003, 10:05pm

Welcome! Sorry you have clusters, glad you found this board.

Alcohol is the most universal trigger. When we are in a cycle and susceptible, a drink or two is nearly certain to cause a headache.

Daylength is an important factor for many people, but others seem not to be affected by changing light.

High temperature is a trigger for me. My 2002 cycle kicked in early after a case of heat exhaustion. Several people have written about sticking their head in the freezer, or running out to the car to get a powerful cold air stream when the pain hits. A few people have talked about some ice - packed device with a fan to help abort.

Viagra and ginseng may be triggers. They increase nitric oxide production, which research indicates is one of the final steps in causing the blood vessels to change their tone and cause pain. (I drink lots of decaf tea and take turmeric to reduce nitric oxide - I think it helps me, but it is hard to tell with clusters).

I haven't heard about strong odors being a trigger. My guess is that when you are on edge and ready to have a cluster, you might be more sensitive to smells. But that is just a guess.

I take 5htp (serotonin precursor) and melatonin (serotonin derrivative) as preventives when my sleep gets messed up - my cycle is pretty regular in July and August, and I get specific sleep disturbances, twitching eyes, and brain tingles before the headaches start. Don't 5htp with anti-depressants; could cause serotonin syndrome.

Have you tried oxygen? That is considered to be one of the best abortives, along with imitrex. Lithium is another preventative that many people here feel is useful.

You will find that there are lots of individual differences here. There are many patterns, and people who don't seem to follow any of the patterns. Same is true for meds.

My headaches almost always start when I'm asleep. The first day is around 6 am, and as the cycle progresses, they start earlier and earlier, until they kick in right after I fall asleep.

Sorry, don't know much about the spinal tap (--insert movie joke here--). Maybe some one else here can help on that.

Title: .. Triggers? ... Spinal Tap?
Post by Bob_Johnson on Sep 26^th, 2003, 8:36am

The discussion of triggers seems to be an endless topic here--but alcohol is at the top of the list. (Have you explored the buttons on the left?) Yes, heat has shown up in at least one medical article as a trigger and that has been my experience.

Your dose of Verap is on the low side. Your increase in attacks may have to do with using too little.

Strongly suggest asking what your doc suspects before moving to a tap. This is not routine in cluster treatment.

Very much encourage you getting one of these books. Given your work, I think the first one would be better.

MANAGEMENT OF HEADACHE AND HEADACHE MEDICATIONS, 2nd ed. Lawrence D. Robbins, M.D.; pub. by Springer. $49 at Amazon.Com. This volume is better organized and easier to read for nonprofessionals compared to Saper's book. It covers all types of headache and is primarily focused on medications. While the two chapters on CH total 42-pages, the actual relevant material is longer because of multiple references to material in chapters on migraine, reflecting the overlap in drugs used to treat. I'd suggest reading the chapters on migraine for three reasons: he makes references to CH & medications which are not in the index; there are "clinical pearls" about how to approach the treatment of headache; and, you gain better perspective on the nature of headache, in general, and the complexities of treatment (which need to be considered when we create expectations about what is possible). Finally, women will appreciate & benefit from his running information on hormones/menstrual cycles as they affect headache. Chapter on headache following head trauma, also. Obviously, I'm impressed with Robbins' work (even if the book needs the touch of a good editor!) (Somewhat longer review/content statement at 3/22/00, "Good book....")

HEADACHE HELP, Revised edition, 2000; Lawrence Robbins, M.D., Houghton Mifflin, $15. Written for a nonprofessional audience, it contains almost all the material in the preceding volume but it's much easier reading. Highly recommended.

Title: Re: Hello ... Triggers? ... Spinal Tap?
Post by judyw on Sep 27^th, 2003, 11:14am

Hi...only thing to add to above posts is that verapamil is low and would suggest an increase before you give up on its possibilities as it often takes much more to work with CH...As for the Spinal Tap, it is most often used to rule out MS type conditions...talk in more detail with your doctor on why he is thinking of the tap...Get as much information as you can when making decisions, especially about your health...even second opinions...Have you asked him to check out this site...OUCH information is a good tool for him, too...

Title: Re: Hello ... Triggers? ... Spinal Tap?
Post by ave on Sep 27^th, 2003, 12:34pm

jchris, just want to add that I remember at least two clusterhead posting that certain smells worked as a trigger.

It is not usual, I agree, but then alcohol is not a trigger of mine, and liquorice IS! Lol.

Yes, on the Verapamil dose being too low. Try, within the amounts you are allowed, to up the dose. It does take a few days to get the body used to it, though.

I would refue the spinal tap if the doc cannot extensively prove that you may need it...

Good luck

Title: Re: Hello ... Triggers? ... Spinal Tap?
Post by Prense on Sep 27^th, 2003, 12:43pm

Some CH symptoms are similar to what various people with MS suffer. Spinal tap is a way to rule that out. Just make sure that who ever does the tap knows what the hell they are doing. If you haven't described temporary numbness or paralysis symptoms to your doc, I don't know why he would go this route. Those are symptoms that lead to a MS diagnosis normally.

Title: Re: Hello ... Triggers? ... Spinal Tap?
Post by Kenzie60 on Sep 27^th, 2003, 4:52pm

A definite trigger for me is gasoline and moth ball.

Roseanne

Title: Re: Hello ... Triggers? ... Spinal Tap?
Post by notseinfeld on Sep 27^th, 2003, 7:53pm

Chris, boost that Verapamil bubba! 240 is like trying to stop a tidal wave with a sandbucket. I would also recommend quitting smoking although some short term effects are beneficial in the long run it ruins your vascular system and hemoglobin gets quite pissed. (just a guess on the cigs)

I have a very abnormal trigger and that is that I cannot watch television for more than about 45 minutes in a row. Otherwise, I'm hit and hit hard. Haven't been to a movie in forever and am afraid to see anything that's a hour long without a handy tape. Additionally, there's alcohol, hot tubs, and democrats/republicans.

The only SURE FIRE preventative is Prednisone and if you haven't tried it I would be surprised if it didn't give you some immediate (first or second day) relief. Drawback is that you can only take it for a brief amount of time, usually 10 days on a taper-down method.

Hope this helps.
4 years chronic and still not without hope..

nots

Title: Re: Hello ... Triggers? ... Spinal Tap?
Post by Prense on Sep 27^th, 2003, 11:14pm

on 09/27/03 at 19:53:56, notseinfeld wrote:

The only SURE FIRE preventative is Prednisone

There is no "sure fire" anything for CH...pred works for many people though.

Title: Re: Hello ... Triggers? ... Spinal Tap?
Post by tommyD on Sep 28^th, 2003, 7:05am

There is no "sure-fire works everytime for everybody" preventive.

But the indole-ring hallucinogens are the closest things to it.

Prednisone works quite well, but is only temporary (usually followed up with verapimil) and carries some nasty side effects...

The indole-ring hallucinogens (psilocybin/psilocin, LSD) have the highest success rate of any preventive yet found, but are illegal in most places, and are contraindicated for those with some kinds of mental illness.

Check it out at: www.clusterbusters.com

Spinal taps are not usual diagnostic tools for CH. Apparently your results with verapamil have made your neuro suspicious that something else might be going on. We should not be second guessing the neuro, but you should ask him what he is looking for and why he thinks the spinal tap is needed.

Is this the same doc who ordered the three MRIs and the four CTs? One of each may be prudent (to rule out tumors and such) but that sounds like overkill. Hope your insurance picked up the cost.

-tommyD

Title: Re: Hello ... Triggers? ... Spinal Tap?
Post by surfshi on Sep 30^th, 2003, 2:17am

Dude be careful with the spinal tap if you don't need it.
Don't do it. Their are risk...I run my Verapimil at up to 720 sr, Been maintaining 240 for 1mo+ and pain free with a few shadows. 720 is my eraser level and am not sure yet what my preventative level is yet. So for now i'll stay at 240. the only side effects that I noticed ws ah well it works, ok and the side effects are nominal as to the benefit I recieve. Or was it the (celexa). I to have trouble with (watching tv or the comp srceen while in cycle, and bright flourescent lights are a killer also.) Prednisone is also used , in addition to imitrex, But again be careful with the prednisone and use it as your doc RX. For me its usually a burst statring at 60 mg then to a tapper. Once I was RX 120>taper, never again at that high dose.
Odors of heavy perfumes, paints, stains and thinners are a scherbel trigger for me when in cycle. Not sure if alcohol ever was for me, but then again I discontinued the use of that some years ago. It is best to stay away from it in cycle from what I have read. Never could figure out why some peole use it knowing what the consequences would be, kind of silly don't cha think. Sorrry to hear your sufferin take care now...Surf