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        Cluster Headache Help and Support >> Cluster Headache Specific >> Need Advice
        
(Message started by: cindymoore on Jul 10^th, 2007, 10:19am)

Title: Need Advice
Post by cindymoore on Jul 10^th, 2007, 10:19am

My husband has had CH for about 12 years and he will NOT go to the Dr. I don't know what to do. He went to a Dr about five years ago and the Dr. did not know what he was talking about. 1st it was migraines then it was sinus.....a bunch of pills, test and money later he still had no relief. After years of reasearch I found out what was wrong with him but he refuses to get treatment. soooooo for the past few years he has been crushing tylenol with Pseudoephedrine but now with the new laws it is getting harder to find the right mix. I am trying to find another OTC that might work or any other ideas you might have. My husband had a cousin die of a brain tumor on his birthday and he fears that somehow his CH will turn into a tumor, so getting him to a Dr. right now at least is not possible.

He has the headaches about two-three months out of the year 4-6 a day
Headbanging
watery eye
only on one side
He has begged me to kill him once
hot and cold seem to be the trigger
yawns alot when they first start

Title: Re: Need Advice
Post by artonio7 on Jul 10^th, 2007, 10:37am

Welcome Cindy. Sorry that your husband has pain.
Did your husband see a neurologist? If not he should. Depending on where you live I'm sure someone here on the board can recommend a neurologist worthwhile.

Tylenol or any other over the counter med never did anything to help my Cluster Headaches.

with warm regards,
Tony

Title: Re: Need Advice
Post by George_J on Jul 10^th, 2007, 10:51am

Crushing tylenol with pseudoephedrine? Is he trying to duplicate the formulation of an old (haven't seen it for a long time) OTC medication called "Sinutab"?

Sinutab was a mixture of acetomeniphin (Tylenol) , pseudoephedrine and clorpheneramine maleate. Twenty years ago or so, there was a bit of press that some doctors even glommed onto that it might work as a preventive for cluster headache.

I went through several cycles years ago, dosing myself up with the stuff on the advice of a physician. Two tablets every four hours for weeks, amounting to around 1000 mg tylenol, 4 mg pseudoephedrine, and 4 mg chlorpheneramine maleate each dose. Doubt it did my liver much good. To the best of my recollection, it worked poorly if at all.

It's really important that he see a doctor--there's no substitute for a firm diagnosis. Although it sounds as if he may have CH, there are many different headache types, and inappropriate treatment can be ineffective, harmful, or even fatal.

Presuming that he has CH, I'm sure that others will be along to describe more effective prescription medications than the Tylenol and Pseudoephedrine regimen. Breathing pure oxygen at 10-15 lpm with a non-rebreather mask is a potent abortive for many here. There are actually more effective OTC approaches to preventing cluster headache as well, including melatonin. Quite a few people report that energy drinks with caffeine and taurine, like Red Bull, can abort a headache if slammed at the first sign.

Please encourage him to quit with the Tylenol and Pseudoephedrine. It's unlikely to do him much good, and if he's taking excessive quantities of Tylenol, it could be actively harmful.

Read, read, read. Lots of good information here. Please see if you can encourage him to join us as well.

Best wishes,

George

edited to add:

Found the following reference to a letter written to the New England Journal of Medicine in 1980 on the subject of CH and Sinutab. FWIW.

http://www.ncbi.nlm.nih.gov/sites/entrez?cmd=Retrieve&db=PubMed&list_uids=7383062&dopt=Abstract

Title: Re: Need Advice
Post by Guiseppi on Jul 10^th, 2007, 11:03am

Take it from another guy...(who readily admits we're not really bright).......we hate going to a doctor and the only thing we can tell them is....owie it hurts. We feel like a wimpy, candy assed baby who can't nut it up and handle a little head ache. Unfortunately most doctors do nothing to alleviate this with their: Well you just have too much stress, give up coffee, alcohol, sweets, lose 10 pounds and give up sex.

Get him to visit this board. Try and convince him we understand, and can explain how to get the help he needs without enduring those amused/disgusted looks from GP's who have no idea what we're enduring.

Absent getting him to do that:

Get some energy drinks, Monster, red bull etc., any that conatin the combo of caffeine and taurine. Have him SLAM DOWN 2 of those at the start of a head ache, works well as an abort for many. Several cups of coffee will sometimes do i a pinch. When he is in cycle watch out for alcohol, changes in stress habits, either more or less it's the change that triggers it, changes in sleep cycles, all tend to be triggers. Get him off the over the counter stuff, doing serious damage to his internal organs with long term abuse of that stuff.

Please get him on the board and let us try and help him. We all get it. We experience the identical pain that he's enduring and really do understand.

Guiseppi

Title: Re: Need Advice
Post by Bob_Johnson on Jul 10^th, 2007, 11:05am

I'm sending you an instant message in addition to this material.
-----------
MANAGEMENT OF HEADACHE AND HEADACHE MEDICATIONS, 2nd ed. Lawrence D. Robbins, M.D.; pub. by Springer. $59 at Amazon.Com. 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.

=======
Here is a link to read and print and take to your doctor. It describes preventive, transitional, abortive and surgical treatments for CH. Written by one of the better headache docs in the U.S. (2002)
http://www.brightok.net/~mnjday/chtherapy.pdf

========
To locate a headache doc:

1. Search the OUCH site (button on left) for a list of recommended M.D.s.

2. Yellow Pages phone book: look for "Headache Clinics" in the M.D. section and look under "neurologist" where some docs will list speciality areas of practice.

3. Call your hospital/medical center. They often have an office to assist in finding a physician. You may have to ask for the social worker/patient advocate.

4. http://www.achenet.org/physicians/ On-line screen to find a physician.

5. http://www.headaches.org/consumer/index.html Call 1-800-643-5552; they will send a list of M.D.s for your state.I suggest using this source for several reasons: first, we have read several messages from people who, even seeing neurologists, are unhappy with the quality of care and ATTITUDES they have encountered; second, the clinical director of the Jefferson (Philadelphia) Headache Clinic said, in late 1999, that upwards of 40%+ of U.S. doctors have poor training in treating headache and/or hold attitudes about headache ("hysterical female disorder") which block them from sympathetic and effective work with the patient; third, it's necessary to find a doctor who has experience, skill, and a set of attitudes which give hope of success. This is the best method I know of to find such a physician.

Title: Re: Need Advice
Post by southwalessunshine on Jul 10^th, 2007, 2:10pm

I have personally gone to my doctor every step of the way with my Ch, but i think women tend to be more open with things like this. Men find it harder especially with headaches. it's true that not many docs take this condition seriously and I've met alot of them! I understand he is scared but try to get him to at least take a look around this site. i only found it yesterday and already i feel like I fit in somewhere finally, and it's really amazing to realise you're actually not a fraud. Even if he says he's not going to the doctor, if he at least takes a look here it may help in some way, and i personally think that it could give him the nudge he needs to face this. my opinion is that if you can take medication that will stop this beast, take it! This pain is really, really bad and the thought of him or anyone suffering when they don't have to is too much!
Fingers crossed this helps you both in some way. Just remember that even if your husband doesn't come take a look, you can pop in atany time and get some advice or support x

Title: Re: Need Advice
Post by thebbz on Jul 10^th, 2007, 9:06pm

Denial doesn't work. You can lead a horse to water....
but you cant make him drink. Sooner or later the pain will make him see the light. I would say,"I have no pity for someone that doesnt help themselves". You on the other hand I have concern for as I have seen the look in my wife's face while I am in a cluster. Hang tough. You are a good supporter and he is a lucky guy in that respect. Drag his butt to the doc.
all the best
jb

Title: Re: Need Advice
Post by BlueMeanie on Jul 10^th, 2007, 10:05pm

And I thought I was hard headed. :( If he won't go to the doctor, you shold at least have him check out this site. Lots of good info and techniques for dealing with Clusterheadaches. Since he won't go and is not even sure that's what it is, i don't want to recommend treatments. I can say that I went years with nothing working to stop the pain until i found the right med. I can now stop the pain in less than 15 minutes. Hope he eventually decides to get relief.

Title: Re: Need Advice
Post by horsegirl on Jul 11^th, 2007, 1:56pm

this might sound wrong to some people but if i was you i would go to a doctor and tell him you have clusters and get o2 and have him try it ,mostly cause it would be realy wrong if it was meds, but because if he is yawning alot , it is a symptom of lack of oxygen and may realy help him with his clusters, make sure you get the right mask.and put it on 15. i took sinutab when i thought it was sinusis years ago and it did help me, but the tylenal is realy not good for the liver. i'm sure it was the antihistamine that helped me. maybe if he tries the o2 he will see there is help out there and tyr prevents like verapimil and steroids, it works well for me.men are bull headed. does he care when you tell him how much this is hurting you?

Title: Re: Need Advice
Post by Patrick_A on Jul 11^th, 2007, 4:55pm

on 07/10/07 at 11:05:02, Bob_Johnson wrote:

Yes, What Bob said! Especially the part about finding a competent Neurologist to diagnose him.

Title: Re: Need Advice
Post by BarbaraD on Jul 12^th, 2007, 6:57am

Get some Red Bull and have him chug-a-lug a can of it at the onset of the headache. That will work better than the OTC stuff.

And please try to get him to see a doc (neuro preferably) - BUT interview the doc and make sure he knows something about CH before he goes off on something else. If he doesn't know anything about headaches - get another doc.

Keep us posted.

Hugs BD

Title: Re: Need Advice
Post by Wayne on Jul 12^th, 2007, 7:45am

Hi

The only OTC thing that works for me is Redbull, sometimes with a Migril if its really bad. For the rest he may think that they're working but only because the CH goes away by itself.

Cheers,

Wayne

Title: Re: Need Advice
Post by chrisw on Jul 12^th, 2007, 10:14am

I know what you are going through. Men are big babies sometimes about going to the doctor, or maybe theyre martyrs, I dont know (i am sure men and women would have a different answer to that),
try to get him some O2. that is the best abortive other than trex. this might be more difficult without a script, but there are ways to get it . welders supply etc.

good luck
chrisw

Title: Re: Need Advice
Post by cindymoore on Aug 8^th, 2007, 4:55pm

I got him to the head Doc., brain picker said .......drum roll please..............Cluster Headache.

He is on Imitrex now with another pill to prevent. He is also set up to have an MRI later this month.

Thanks guys!!!

Title: Re: Need Advice
Post by Guiseppi on Aug 8^th, 2007, 6:29pm

That is awesome!!! Getting the diagnosis is a HUGE first step. Now drag him, kicking and screaming, to the board and let us help him. I've said it before but supporters like you are worth their weight in gold!!!

Guiseppi

Title: Re: Need Advice
Post by sassymutter on Aug 9^th, 2007, 12:14am

isn't this the greatest bunch of people you have ever had contact with? My son and I are newbies too, and this group has been more help than any medical assistance we have sought. Once your husband gets on the board and finds out how many more are just like him, and he is not alone, and he is not weird or a freak, then he will bless the day you found them. Once you get him on the board, then plan on attending next year's convention. I didn't think we could learn any more than we had, but was so wrong. The convention pulled all the strings together and brought us into the family. Best wishes to you, and God bless you for having the strength and wisdom to seek the help.

Sharon