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        New Message Board Archives >> 2004-2005 Getting to Know Ya Posts >> Hello to all!! Answers and more questions?
        
(Message started by: rewards91 on Apr 3^rd, 2005, 1:49am)

Title: Hello to all!! Answers and more questions?
Post by rewards91 on Apr 3^rd, 2005, 1:49am

::)
Hi to all; I am a new member. I am the wife of a cluster sufferer. It has been about 14 years since he was diagnosed. And about 15, since he started with the cluster's. I had put a message up earlier; asking if there was anyone out there with any mental illness? The reason for the question is because there is research that has proven there is a link between headaches and depression, bipolar, schizophrenia, and so on. This is not in question, there is a link; the headaches cause a change in brain chemical. To what extent and since it does not affect all headache sufferers they are unsure of what the criteria is and who is susceptible to the mental illness. My husband from the day i met him, (before the headaches started) he was a risk taker and a hard worker. After starting with the headaches; over a period of years, he began to change as far as his impulsiveness and moods. His cluster's cycled about every 2 years in the beginning, lasting for one month. Now we are up to 4 years and counting.......(knock on wood). As his behavior's changed; I often wondered what is going on with him. Finally, a few years ago; he was diagnosed with depression. Basically, he felt worthless, and very down on himself. This was during a time when he wasn't even suffering from a cluster cycle. He went on meds, which increased his feelings. The opposite of what they are supposed to do. After a Manic episode, that lasted approximately 1 month. He was diagnosed with Bipolar disorder. He was put on Depakote, and two anti-depressants at fairly high dosages. When they put him on the Depakote, I was shocked. Simply because this was part of his regimen of meds during his cluster cycles. When I started to research the bipolar disorder; I was stunned to see that many of the meds that are used to treat the cluster's are also used to treat Bipolar. This led me to dig; into this phenomenon.
When i put up a message before i had a few people answer me saying they didn't think there was a link; and that the depression that cluster sufferer's suffer from is simply because of the lifestyle and pain of the cluster's themselves. Which could be the case, but depression usually is in the geneology (if you dig in your family history) This is also true of the Cluster's, my husband's uncle and grandfather and recently an Aunt have all been diagnosed with Cluster's. And maybe, they were never diagnosed, maybe family members just remember an Aunt that had bad headaches. I did have one person contact me that does believe that this is a possibility.
My reason's for signing on and asking this question was to see how many people there really are out there that are medicated for depression, or any other mental illness? This questioning, is to try to get the researcher's and medical community to go further in the research; so that people can become aware of these possibilities, and what to watch for. I have watched my husband want to give up on his life with the cluster's and with the Bipolar; and if we would have known then, what we know now, maybe we would have taken a few measures with the Bipolar, when the depression reared it's ugly head.
So, please let me know; how many of you have had a diagnosis of similar sorts? Thank you, and i hope to hear from all of you!!!! ;)

Title: Re: Hello to all!! Answers and more questions?
Post by TxBasslady on Apr 3^rd, 2005, 3:15am

Welcome to the board.

I suffer with CH, and even though CH can bring about depression, I really have no big problems with it.

While in the grip of a Kip 10, I know that I become depressed, but that feeling goes away when the pain leaves.

I'm sure some others will come along and address your concerns and questions better than I.

CH is related to the Hypothalamus. Seems we have some faulty wiring...LOL.

Noone in my family, past or present, has been a CH sufferer.

I hope you find the answers you need.

Good luck to you and lots of PF vibes to your hubby.

Let us know how he's doing.

Jean

Title: Re: Hello to all!! Answers and more questions?
Post by javi_spain on Apr 3^rd, 2005, 6:53am

Hi there

Ummm, what you say is interesting... are cluster sufferers prone to other illnesses or conditions?

Well, they say that clusterheads are a sociable and hard-working lot, they are prone to stress and, for this reason, CHs are often referred to as "executive headaches"

Some members of this board have posted that they tend to have bouts when going through a "lazy patch" and therefore they are afraid of quiet periods.

Does the alternancy of "energetic periods" and "lazy periods" suggest any kind of disorder? Well, that sounds a bit far-fetched to me but maybe there is a link between CHs and a given personality type.

It is a chicken-egg scenario... maybe the proximity of a cycle drains your energy as you brace yourself for the pain and not the other way round.

I, for one, can tell you that I don't consider myself a mentally ill person at all, but I do experience periods of "high energy" and other of marked "lack of energy"... does it make me slightly bipolar? Maybe, but believe you me, that is the least of my worries ;;D

No sign of clusters or mental illness in my family either.

Anyway, sorry for the long mail, good luck to your husband and yourself.

Regards

Javier

Title: Re: Hello to all!! Answers and more questions?
Post by Bob_Johnson on Apr 3^rd, 2005, 9:24am

In my reading of medical literature over the last 25-years I've never seen any suggestion that clusters is linked to mental illness--with the possibility (purely hypothetical at this point) that depression and CH may share some common origins.

That meds are used to treat several, unrelated disorders, does not mean, for example, that clusters are linked to bipolar disorder or to seizures.

In the absence of any clear symptoms, it only creates needless anxiety to fish around for other, more troublesome disorders.

Title: Re: Hello to all!! Answers and more questions?
Post by Fig on Apr 3^rd, 2005, 8:42pm

I was very glad to see your post and I most definately can relate! I have suffered from severe clinical depression most of my life and have also had my headaches all these years (tho not all have been clusters). Headaches run in my family, as does the tendency for mental illness (depression). So, yes, I most certainly do believe there is a link. This is NOT the same as being depressed because of being in great pain. A mental illness such as bi-polar disorder or a severe depression is itself great pain. The headaches are a bonus. Take care and be strong. Love to you and your husband. Marion

Title: Re: Hello to all!! Answers and more questions?
Post by Fig on Apr 3^rd, 2005, 8:59pm

P.S. Ooops!! Sorry...forgot the rest of your question.. yes, I am on medication for my depression and anxiety. Celexa, Buspar and Topamax. I used to take Prozac (of course) and Xanax, but Xanax is wickedly addictive, and I have enough problems! ;)

Title: Re: Hello to all!! Answers and more questions?
Post by jokrs2 on Apr 3^rd, 2005, 9:42pm

Hello to you and your husband.

As for me personally I am registered at Clusterheadaches.com. I have never been to depression.com or bi-polar.com, etc... (don't even know if they exist). I think you know where I'm going here. Since I was run over by a car at the age of 4 and dragged on my head on pavement for a distance, I can definitely tell you that I have been treated for everything that you have mentioned and then some. My dad has Narcolepsy & Cataplexy and has been treated with antidepressants, and when he was in his 20's & 30's they treated him with "only" methamphetamine so he could stay awake to work. In looking at meds it would appear that in many cases, if a doctor doesn't know what's wrong he may just prescribe you an antidepressant thinking that a mis-firing brain may be bringing on "unreal symptoms". I've noticed on the CH post's that 1 persons "helper medicine" could be another persons enemy. I have no other family history of depression or mental-illness and they believe that my fathers condition was brought on by severe physical abuse at the hands of his father.
I wish your husband pain free days and extreme joy. Joe

Title: Re: Hello to all!! Answers and more questions?
Post by Margi on Apr 4^th, 2005, 9:56am

Rewards, I really think you're steering down the wrong path here. Cluster, it is popularly believed, is because of a difference in the hypothalmus - a condition present at birth. Since the hypothalmus controls so many things (mood being just one of it's many duties), it could be that for your husband, his scales have been tipped because of irregular hypothalmic activity. But to paint with such a broad brush and say that all sufferers are susceptible to mental illness - I really don't think that's right. I think you'll find that mood disorders are in the minority in this group. In fact, there are many clusterheads who can't take the anti-depressant meds because they make their attacks worse. Yes, cluster is often treated with lithium, the bipolar med, but at MUCH smaller doses than what is required to treat bipolarism.

Yes, a lot of clusterheads feel extreme anxiety and desparation when a cluster cycle is pending, but that doesn't make them all mentally ill. Is a person standing in the path of an oncoming train considered mentally ill because of his anxiety and depression in the face of his impending doom? Sorry, didn't mean that to sound as sarcastic as it came out, just trying to illustrate my point.

I really think that if you have noticed a recently drastic personality change with your husband, you should dig deeper into it - don't get me wrong. But don't blame it just on the clusters though - that's what I'm trying to say. Drastic and sudden personality changes can (and usually are) indicitave of something else going on within the brain. I guess my my rather long-winded advice here is to not throw the baby out with the bathwater, ok?

Title: Re: Hello to all!! Answers and more questions?
Post by seasonalboomer on Apr 4^th, 2005, 10:22am

I believe the challenge that comes with anectdotal historical information is that the answer we are looking for becomes the answer we find. Do you totally disregard genetic data that can help you understand your present situation? No, but take care not to try and draw too many lines.

In the end it is what you are going to do today to deal with CH.
Knowing that it has a genetic link or enivronmental link doesn't change that. My father had Clusters and it has helped inasmuch as I had knowledge. But, in the throws of a cycle, knowing Dad had them too hasn't got me through a "hit" with any more dignity than a "hit" reduces me to anyway.

Reviewing treatments with the vast data that exists on this site as to effectivness and experiences is going to be the place you always arrive at after all the forays in the "where" did it come from. It still comes back to "what" will be done today.

Pain free days for your husband.

Title: Re: Hello to all!! Answers and more questions?
Post by Kris_in_SJ on Apr 4^th, 2005, 8:29pm

Hi Rewards,

I'm sorry to say that I have Episodic Cluster Headache Syndrome. I'm happy to say that I've never suffered from any form of mental illness, including clinical depression.

There's no doubt that when I'm in cycle, I become rather depressed. Pain does that to people. When out of cycle, I consider myself to be a normal, hardworking, generally happy person.

Margi probably said it best in her post. We can't draw conclusions. Every one of us who suffers this syndrome is different. The one thing we all have in common is a wish to understand better the cause of our disease and that there was a definitive treatment for everyone.

Probably not the answer your were looking for, but thanks for putting your questions out there.

Hugs,

Kris

Title: Re: Hello to all!! Answers and more questions?
Post by orso on Apr 5^th, 2005, 4:07pm

Hey: I'm new to the board also. I've been corresponding via email with Nani. And to keep it short I've had CH since 1988 and was originally diagnosed by a neurologist after the full run of tests. Recently the CH started getting [smiley=bigguns.gif]worse and the relaxation therapy from my martial arts training couldn't help so we started over again. I just completed another round of MRI's EEG's, EKG's the whole 9 yards, this time with another internist and neurologist, in the intervening years I was treated with Imitrex, Imigran, Verapamil, Prednisone, O2, and Zomig. Everything except Zomig worked for a period of time then would taper off and then not work at all. The Zomig has such bad side effects [smiley=hurl.gif], I'd rather have the headaches. The idea of someone having mental disorders is not so farfetched. I am bipolar, suffer from PTSD, OCD, and I'm being treated for depression. The good thing is one of the meds that is used to treat the bipolar disorder works wonders for the classic migraine headache and does knock the hard edge of the CH. It's called Topomax and it took my Psych docs at the VA to recommend it. Combined with relaxation and concentration therapy I'm able to make it through the months that CH is here usually March/April and October/ November. I drink 96oz of water a day and walk about 3 miles per day. I have my own post for headbanging and I try to isolate myself. Sadly it appears that my son has CH also. The only thing I've ever found that realy put the CH down is steady doses of percoset, or other narcotics. But I'm really scared of them. so easy to become addicted. Some things I've learned about those who have CH: Our pain threshold is higher than that of a normal person on a scale of 1 to12 we can withstand pain in the 7 to 9 range before screaming. [smiley=hammer.gif] We tend to feel less sympathy for those with "other" headaches [smiley=nopity.gif] some of us think of neurologists as witch doctors, mainly because they think we are malingerers. Most doctors don't understand the type of pain we are feeling when CH comes to roost.

Title: Re: Hello to all!! Answers and more questions?
Post by Kris_in_SJ on Apr 5^th, 2005, 8:34pm

Watch out for those narcotics, Orso. They're notorious for causing rebound headaches, not to mention the monkey they attach to your back.

PF Wishes,

Kris

Title: Re: Hello to all!! Answers and more questions?
Post by TonyG1 on Apr 6^th, 2005, 9:49pm

I'm an episodic CH -- have been thus for working on the past 19 years. I'm glad to say I've never suffered from any mental illness or depression as a result -- My own biggest fan ;;D -- No, that isn't manic ...

When I go into a cycle, I notice I tend to be a little more on the hyperactive side (everything tends to kick into overdrive) -- in terms of work -- Perhaps just gearing up for the pain to come ...

By the time my cycles end, I'm not depressed ... just tired (Lucky me always gets the night time hits -- nothing like sleep deprivation to make things better) :) and wishing for PF time...

I tend to agree with Orso in terms of the pain threshold being higher than "normal" ppl and the lowered sympathy factor for ppl with "other" types of HAs --- I think the latter comes for continued exposure to excruciating pain levels ...

Good luck to you and your husband -- wish you both PFDANs !

T.