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Topic: Hi, I'm Kate--Chronic Cluster Mom (Read 506 times) |
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brauer100
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Hi, I'm Kate--Chronic Cluster Mom
« on: Aug 12th, 2007, 7:43pm » |
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Hi, I'm Kate, 34-year-old Mom of 3-year-old George and 16-month-old Franny. I've been episodic since age nine and have been chronic for two years. 
Since being chronic, I've found that clusters have pretty much ruined the quality of my life. I get them day and night, mostly on the right side of my head but sometimes they flip. In the past three months, my headaches have taken on sort of a "transformed" quality like transformed migraine, and I'm wondering if any other chronic sufferers out there have had this happen? In addition to the clusters, I have a 24-hour-a-day daily pounding headache in the background. I don't think it's rebound, because I don't use many abortives. I think it's tranformation from having had episodic clusters for 23 years and then chronic for two years straight.
Used to take triptans, but now they make my head explode. Recently went on a high course of Pred that did very little. Also went on a 7-day IV DHE with IV Depakote that helped a little, but not entirely.
Recently did three nerve blocks that gave a little short-lived relief. Next step is going to be botox injections, which I've heard can do miracles, so I'm hoping.
I've spoken with the head of neurosurgery at Mayo Clinic in Arizona and I'm going to fly out there to talk to them about surgery for "intractable cluster," as they call it, but I'm a little uncertain of that, because it's the trigeminal nerve resegmentation surgery, which as I understand only works if your clusters are 100% on one side of the head, and mine periodically switch to the other side from cluster period to cluster period, so I'm afraid that won't be my magic cure.
If I had known this was going to become a chronic condition, I never would have had children, because it isn't fair to do to them. I just am not an adequate mother. I functioned okay when this went for a couple months at a time, but after two years, I'm totally destroyed. I had to quit working, and I look like an old haggard woman. My poor husband--I'll bet he never knew he was in for this when he said "sickness and in health"! I don't know how much longer I can live like this.
I am wondering, are there any other chronic sufferers (or episodic) who have ever experienced anything like a daily "transformed headache" like I've described, where in addition to their cluster headaches, they also have a constant, burning or throbbing headache, that is in addition to the clusters? I've read about "transformed migraine," and this has come on in a similar fashion, after 25 years of cluster headaches, almost like a "transformed cluster."
Kate
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| « Last Edit: Aug 12th, 2007, 7:44pm by brauer100 » |
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PollyPocket
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Re: Hi, I'm Kate--Chronic Cluster Mom
« Reply #1 on: Aug 12th, 2007, 9:54pm » |
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Hi Kate, and welcome to the site. Nope, never heard of it, sorry. But I do understand what you mean about that background headache. My cycle (I'm 22 yr episodic) usually has a several day migraine that kicks my ass in between the hits.
I wanted to address your post because I needed to tell you: you are NOT an inadequate mom! My kids went thru this crap with me, my sweet daughter, then age 7, would bring me her dolly to hold while I tried to ram my head thru the kitchen floor. You know what she tells me now at age 20? "You're the strongest m'f'in person I've ever known" No matter what was going on with the ch, I did the best I could to take care of my kids, and I had 9 years of misdiagnosis. You will find strength to do what you need to do and they will find that they CAN help mom, even if its bringing a dolly or sitting quietly and giving you a tissue when its over.
Don't doubt yourself. Something that having CH has taught me: I am one tough bitch when it comes down to it, and I have taught my kids how to face the seemingly impossible without cowering.
Get your hubby on here too. He'll learn a lot from the other supporters and find support when he needs it, and he will!
Please read all you can on here, there is a wealth of info that will help you deal with this, and much for you and your docs to discuss and hopefully find meds that will help you. \And when you feel like you just can't deal, you get your butt here. We'll be strong when you can't.
Welcome home Kate.
Jen
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GrandPotentate
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Re: Hi, I'm Kate--Chronic Cluster Mom
« Reply #2 on: Aug 12th, 2007, 11:56pm » |
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I've come to the conclusion that everybody's got something, and I guess that means everybody's mom has something, too. As bad as these suckers are, there are worse thing you could have. Let your kids know you love 'em every day. The fact that you care shows that you are a good mom.
My kids were older before I got hit, but they ended up being good support for me. When they were younger, they supported my wife with her battles with cancer (she won!). Don't worry about them, they are quite capable of unconditional love.
A few others may comment on episodic going chronic. I am episodic, but still get all the other "normal" headaches, too. Remember that clusters have nothing to do with "other" headaches - they are a different thing altogether. You may have two things going on. Talk seriously to your doctor, and find out what going on.
Read up. keep in touch.
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Jon
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DennisM1045
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Re: Hi, I'm Kate--Chronic Cluster Mom
« Reply #3 on: Aug 13th, 2007, 8:02am » |
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Hi Kate,
I agree with JenD. The fact that you care shows you are a good Mom. Don't ever doubt it.
You mentioned Triptans but not O2. Have you tried O2? How about Redbull or the many other alternatives out there? This combination works pretty well without all the side effects of Triptans for a great many of us.
I'm glad you found us and get your husband up here. He needs to know he's not alone too. Keep us posted.
-Dennis-
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Bob_Johnson
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Re: Hi, I'm Kate--Chronic Cluster Mom
« Reply #4 on: Aug 13th, 2007, 8:04am » |
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Consider getting the first title. And assume you are working with a doc who has experience in treating difficult headache. Too many folks here have had unhappy outcomes because their doc lacks sufficient experience, interest, and training. If you are seeking another doc, get back for recommendations.
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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.
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brauer100
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Re: Hi, I'm Kate--Chronic Cluster Mom
« Reply #5 on: Aug 13th, 2007, 5:54pm » |
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Thank you to everyone who has responded so far. It means a lot and I've read everything carefully.
I have a good doctor but I still get frustrated...I've been on so many different preventives and abortives with very limited success. I do get relief with O2, but I stay home with my kids, and it's hard to use the oxygen mask successfully with toddlers. I make better use of the O2 at night when my husband is home to watch the kids.
So today, I tried Red Bull during the day for the first time. I never would have known about it if I hadn't discovered this site. It worked to stop a cluster like magic! Much better than triptans for me...I was amazed.
So now I've got a new trick to keep in my fridge for daytime. What a great discovery!
I've got an appointment with my headache doc tomorrow and will talk about this secondary headache--I'm wondering if it's a reaction to one of my meds or maybe just some new, other headache I'm developing in addition to my clusters. In any case, it's driving me nuts.
And I will pick up that book. So many headache books talk only about migraine. I'm always on the lookout for a good read.
Thanks for all your help and support. I will get my husband online, too.
Kate
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DennisM1045
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Re: Hi, I'm Kate--Chronic Cluster Mom
« Reply #6 on: Aug 13th, 2007, 10:12pm » |
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That's awesome news one the Red Bull success. I'm glad you got some relief. I can appreciate how tough it is to focus on keeping a mask planted to your face while simultaneously trying to keep little ones from becoming tangled in your hose.  Could you enlist their help in holding the hose for you? Get em involved. It might make them feel like they're helping you. George is the right age and Franny is right behind him.
Anyway, please keep us posted on how things go. Good luck and PF wishes to ya.
-Dennis-
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brauer100
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Re: Hi, I'm Kate--Chronic Cluster Mom
« Reply #7 on: Aug 14th, 2007, 3:17pm » |
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As of now I have a tentative diagnosis on the secondary headache--hemicrania continua. I spoke with my doc for a full hour today. It seems sometimes people with CH get HC, too, particularly if you've had a long cluster period. So maybe I have a hemicrania continua going at the same time. The one surefire way to find out is to treat with Indomethacin (Indocin). If it responds to it, it's hemacrania continua. Now, that's in addition to my clusters, which I've had all my life. This is just a new, additional headache which has chimed in as a background thing and won't go away.
I'm writing this because if someone else happens to come along and read this they may say Hey, that sounds like what's going on with me! If so, ask about trying out Indomethacin. If it works, you may have two headaches at once--CH and HC, which apparently do sometimes go hand in hand. Since they both happen on one side of the head, it's easy to not know you have them both.
So I'm hoping it works for me and knocks out this annoying background headache. Clusters are enough!
Kate
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GrandPotentate
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Re: Hi, I'm Kate--Chronic Cluster Mom
« Reply #8 on: Aug 14th, 2007, 11:53pm » |
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Indomethacin was one of many drugs that a doctor tried on me before the CH diagnosis. Ditto for triptans. But I understand that these are very effective for some other headaches. It sounds like you scored a winner with the doc if he is spending that much time with you. I'm jealous!
For me, caffiene didn't seem to stop the CH's, but did seem to postpone them until the evening when I could deal with them at home. Kept my job pretty much uninterrupted, but ruined my social life for awhile.
I resisted oxygen for quite awhile, because it seemed like a bother. But one doctor said give it a try, and it has been the most effective thing I've found to date for CH. The clustermasx is good.
Keep in touch; we're all pullin' for ya.
Jon
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rolo65
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Re: Hi, I'm Kate--Chronic Cluster Mom
« Reply #9 on: Aug 15th, 2007, 12:27am » |
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on Aug 14th, 2007, 11:53pm, GrandPotentate wrote:For me, caffiene didn't seem to stop the CH's, but did seem to postpone them until the evening when I could deal with them at home..... ruined my social life.........
I resisted oxygen for quite awhile, because it seemed like a bother. But one doctor said give it a try, and it has been the most effective thing I've found to date for CH. The clustermasx is good. |
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My HA therapist keeps hounding me to quit the coffee and I keep telling her she’s flipping crazy.
Makes you wonder if they (the PDR) even list O2 for CH?  Dilly doctors  They should giv ya the tank and show ya how to use it right there in the office!
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| « Last Edit: Aug 15th, 2007, 12:38am by rolo65 » |
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Sandy_C
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Re: Hi, I'm Kate--Chronic Cluster Mom
« Reply #10 on: Aug 15th, 2007, 3:54pm » |
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Kate, I've got my fingers crossed for you. Let's hope the Indo knocks out the HC, and then you can deal with the CH.
We're here for you. Keep us posted, ask any questions you might want or need to ask, and we will do our best to help you.
Best of luck
Sandy
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luveemom
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Re: Hi, I'm Kate--Chronic Cluster Mom
« Reply #11 on: Aug 16th, 2007, 11:27pm » |
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Hi Kate,
I am new here too, and the people here are truly a blessing and have been so supportive to me I can't begin to tell you. I am also chronic, and have have clusters, misdiagnosed since I was 19....I am now 40. I have 4 teenage sons and a 5 month old baby boy and I can relate to what you mean about feeling bad about not being a good mom, but you are.....the wonderful people on here have reassured me that I am too when I am in the grip of the beast, which has been most of the time lately. As for the headache all the time, the only thing I can say is I have terrible shadows all day long, some more intense than others, and I am not sure if that is what you mean, or if you suffer from something else. I know it is so difficult, but hang in there, like those before me have said your children do and will always love you UNCONDITIONALLY....that you can count on. You can get through this, and this is a great place to receive support when you need it.
PF wishes
Alicia
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Callico
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Re: Hi, I'm Kate--Chronic Cluster Mom
« Reply #12 on: Aug 22nd, 2007, 3:23pm » |
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Welcome aboard. You sound like you have a grat Dr. I'm with someone else who posted b4. I'm jealous too!
I found also that Red Bull works well for me, and about 5 months ago I started using Kudzu as a preventative.(See the Meds page) It took about a month for it to totally kick in, but for about the last 4 1/2 mos I've been basically PF. I too am chronic. As long as I take the stuff regularly I'm ok with only an occasional shadow breaking through, with nothing higher than a K3 in three months. I found that with my younger children that they adapted better than my elder ones when I went chronnic a few years ago. Just give them all the love and attention you can when you can. They will adapt and understand. It will also make them more compassionate to others as they get older. Please get your husband involved on here. There is a lot he can learn to help HIM deal with the situation as well as be able to support you with your needs.
Jerry
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brauer100
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Re: Hi, I'm Kate--Chronic Cluster Mom
« Reply #13 on: Aug 26th, 2007, 4:08pm » |
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I appreciate all the support I'm getting here, and all the great new information.
Well, I have an interesting update, which is that my secondary headache was actually a major rebound headache. My doctor, who has seemed so great, maybe wasn't. I spent all of last week in the hospital. I was admitted due to "intractable vomiting," which basically meant I was throwing up blood for 30 hours straight. It was crazy. We took my list of meds with me to the hospital. I had been on a 10-day IV of Depakote and DHE-45 prior to this, and taking nasal migranal, two vials per day following that. That was on top of 300mg Topamax, 240mg Verapamil, 10mg Elavil, and a handful of other things, plus the Indocin trial she was putting me on to see if I had the hemicrania continua.
I spent most of the week in the hospital, and the doctors there completely changed my drug regimen to 50mg Elavil and 200mg Topamax, plus O2. The secondary headache is almost entirely gone. I still get my clusters, but the other headache is almost gone.
Now I have to figure out if I go back to my neurologist or find a new one. It takes so long to get in with a new doctor, and I did like that she took time to listen to me, but they told me in the hospital that I had been seriously overdosed. And the worst thing is, when they called my doctor, she didn't return their calls, and she didn't return my husband's call either. She had her receptionist call my husband and say whatever the hospital docs wanted to do was fine.
Well, I'm just glad to be feeling better. I'm going to post a message topic somewhere to see what people think about neurologists and whether or not they would find a new one, and what constitutes a good one.
Kate
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Bob_Johnson
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Re: Hi, I'm Kate--Chronic Cluster Mom
« Reply #14 on: Aug 27th, 2007, 8:07am » |
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Finding 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 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.
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Bob Johnson
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Batch
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Re: Hi, I'm Kate--Chronic Cluster Mom
« Reply #15 on: Aug 27th, 2007, 1:04pm » |
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Hey Kate,
I'm your friendly O2 Pusher... As your children already know you have cluster headaches, I'm sure they won't mind you sitting down next to your O2 cylinder to make the beast go away. You should be able to abort an attack with 100% O2 in under 5-7 minutes on the short end and 15-20 minutes on the long end with a 15 LPM flow rate. A number of us are using a high flow rate O2 therapy at 25 LPM. The increased flow rate cuts the abort time a bunch.
We've a lot of information on using O2 as a cluster headache abortive at the following URL.
http://www.ouch-us.org/medications/oxygen/o2info.shtml
If you want more info on the preliminary procedures for the high flow rate O2 therapy, you can contact me at the following URL:
http://www.ouch-us.org/medications/oxygen/o2comment.htm
Take care,
V/R, Batch
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