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        New Message Board Archives >> 2004 Cluster Headache Specific Posts >> Ill never stop asking ? would love your input!!!
        
(Message started by: snook on Oct 13^th, 2004, 2:46pm)

Title: Ill never stop asking ? would love your input!!!
Post by snook on Oct 13^th, 2004, 2:46pm

:o [smiley=huh.gif] [smiley=huh.gif] [smiley=huh.gif] :-/ Im back starving to hear from chs, Im the wife of a ch , who has a deviated septum( excuss spelling) which happens to be on the same side he gets his chs. Ive or we have talked to doctors about this and get no more or no less then we have already found out on the pc. I would just like to hear from anyone who has a similar problem and if they have any insight tieing the two together. Also does anyone no of any research that is being done anywhere dealing with the beast, if so I really would like to know where so I can research them and any progress if any that is or has been done? I know THERE ARE NO STUPID QUESTIONS , and I am grateful everyday that I found this site and can ask questions without judgement, ( unlike some not a very nice person doctors who either look at me when I continue to ask questions like Im holding them up or wasteing thier time) sorry about the language I know all doctors are not like that , just the 4 Ive come in contact with. I love my husband and really care for all on this site AND I WILL NEVER STOP TRYING TO UNDERSTAND THIS AND LEARNING AS MICH AS I CAN!!!! If Ican do anything to try to help my husband beyond what I do and know now I will . sorry I went on and again god bless you guys and thanks again for being here for me and everyone :P :-* ;) hoping you all a ha free day god bless snook

Title: Re: Ill never stop asking ? would love your input!
Post by floridian on Oct 13^th, 2004, 3:23pm

I've got a deviated septum. Happened when I was a kid. Not sure how much of a contribution that makes to my CH. In general, a history of head injuries are more common among clusterheads.

The standard treatment for a deviated septum is to break and reset the nose - not appealing to me. A friend in college had that done - the whites of his eyes turned red from blood, and he had two real shiners. I have heard that there is an osteopathic manuever that involves inflating a baloon in the nose - it realigns the nose quickly and less traumatically. I don't know much else about it and am not recomending for or against it, but you might be interested in checking that out.

Sinus surgery has been tried by many, and it doesn't seem to bring dramatic improvement. Mechanical problems might act as triggers for some, but there are other genetic/biochemical factors at work.

Title: Re: Ill never stop asking ? would love your input!
Post by Kris_in_SJ on Oct 13^th, 2004, 8:23pm

Hi Snook,

This subject has come up many times - that is, are clusters related to sinus problems?

From what I've read, some clusterheads have true sinus problems and others don't. Regardless, I doubt that the reason your husband suffers clusters is because he has a deviated septum.

We've all read horror stories here about clusterheads undergoing surgery on their sinuses, septums, etc., only to have the surgery trigger a new cluster cycle.

I guess what I'm saying is ... don't work too hard at trying to find reasons your hubby is suffering. Stay focused on supporting him and finding the best relief for him.

And you're right - there are no dumb questions!

Many Hugs,

Kris

Title: Re: Ill never stop asking ? would love your input!
Post by thebbz on Oct 13^th, 2004, 9:40pm

Hey there,
My comment is directed toward your frustration with the medical community. >:( Most doctors are illiterate when is comes to CH. )THEY SUCK. I went almost 20 years crying screaming ER trips. Countless GP's and four neuro's to get a proper diagnosis. I was guinea pigged with so many drug therapy's I cant remember all to this day. It took a good GP and a good neuro just to find a treatment and drug regimen to get through to the next episode. Best to you and your hubby . My wife is a lifesaver for me. ;;D
BB

Title: Re: Ill never stop asking ? would love your input!
Post by TxBasslady on Oct 14^th, 2004, 12:47am

Trying so hard to find answers is terribly exhausting.

You sound like a great supporter.

I have CH....and certainly, I would love to see something, anything, that would cure it. My husband spent countless hours trying to find a rhyme or reason for CH. He felt like you do.....frustrated, and generally p'oed about it.

I asked him to stop looking. I consider myself somewhat lucky, in that, I am episodic. I have met several folks from this board who are chronic. These folks live with CH day in and day out. I don't know where they get their strength and resolve, but I see them handle it.

Hats off to all the great supporters. I truly believe that love is the best support you can give. As a sufferer, I know that love and understanding is what gets me through the rough times.

Guess I didn't really address your question.....but I will say, that for me, I have had less sinus problems since CH, than I did before. Definitely finding a good doc is most important. That's a task in itself.

PF vibes to your hubby, and best wishes to you. I truly hope you find the answers you need. In the meanwhile, keep up the great support! ;)

Jean

Title: Re: Ill never stop asking ? would love your input!
Post by Bob_Johnson on Oct 14^th, 2004, 8:37am

For serious learning I'd recommend:

WWW.MELDRUM.DEMON.CO.UK/migraine. At bottom of home page, look for FAQ on clusters: four sections of extensive material; strong on treatment options.
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HANDBOOK OF HEADACHE MANAGEMENT, 2nd ed., Au. Joel Saper, MD, 1999, Lippincott Williams & Wilkins. A highly condensed volume for doctors but good for "advanced" clusterheads who have a grasp of medical terminology and medications. Covers all types of headache with the section on cluster being brief. Sections on general considerations in treatment and on medications are important.

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.