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        New Message Board Archives >> 2005 Cluster Headache Specific Posts >> Has your CH monitored by a doctor?
        
(Message started by: millie the episodic on Jul 7^th, 2005, 9:40am)

Title: Has your CH monitored by a doctor?
Post by millie the episodic on Jul 7^th, 2005, 9:40am

;;D Hello all you beautiful clusterpeople,
I have had a terrible night fighting with my head no doubt and right now it is winning. I have spent the last 20 mins. talking to my concerned husband about lastnight's ordeal and we would like to know if there is anyone out there who has been monitored, and this I mean some sort of eletrodes stuck on the head, in the affected areas, so that they can monitor and SEE the headache and the pain. I want them to see the pain because I don't believe they believe or can comprehend the pain that I (and you) have been going through. I find it hard to believe that in 2005 we are no closer to finding SOMETHING that can help us. Nothing seems to be fast acting enough, and the doctors don't seem to care enough about. Where are the scientist doing, I heard on the news that they have find that little something in our bodies that makes us crave chocolate.(That's what I thought when I heard it too! There must be a CH study in that pile somewhere and they picked CHOCOLATE, go figure.

Title: Re: Has your CH monitored by a doctor?
Post by vig on Jul 7^th, 2005, 9:56am

I believe it has been 'seen' with a CT scan.

(they see the hyperactive hypothalamus, not the pain, though)

Title: Re: Has your CH been monitored by a doctor?
Post by millie the episodic on Jul 7^th, 2005, 10:44am

so are you saying that they can see how much pain we are really in, because I don't want them to take my word I want them to see it, I really wish they could feel it for about 5 minutes. I figure that would be all that they could handle, but somebodies has got to know how bad this thing is, or let me say some doctor. :o

Title: Re: Has your CH monitored by a doctor?
Post by jcmquix on Jul 7^th, 2005, 10:49am

I know what you mean by that, I wish i could just have my new Nero spent one night at my house. He then could see what the average night is like for the Clusterhead, and then see how he does the next day at work. :)

But I am going to see the Dr again today, and thats just some of the questions that I want to ask. Do you know what a CH is.. ?? See what the response is again.

I'll keep you posted... :)

PFDAN's to ALL !!!

Title: Re: Has your CH monitored by a doctor?
Post by Bob_Johnson on Jul 7^th, 2005, 11:22am

Interesting report on NPR yesterday about people being monitored so that the doctors were able to show the specific part of the body involved in pain. This was for cases of chronic pain in which the patient sometimes is afraid that their pain is not "real" or that others might think they are faking. Being able to see the positive monitor "showing" the pain in process was reassuring.

Try and be patient with docs. Many of them may go most of their working life and not see a cluster headache in process and about half of all docs have poor training in such disorders and in pain management. When a clusterhead comes in asking for Verapamil at high doses we need for effectiveness, most docs will get anxious and tend to a "NO!" because they don't, as Dr. Rozen has pointed out, know this is a common and legit pattern for cluster headache.

As for slowness to find a "cure": The majority of human ills are treated symptomatically because the actual cause or cure is not known. Most people don't really appreciate just how relatively recent are many of the medical advances we now have. I have to remind myself that antibiotics were discovered in my lifetime; that the cancer surgery I had 9-years ago did not exist when I was in grammar school.

Tempering impatience with knowledge and a dose of appreciation will make our lives more comfortable.

Title: Re: Has your CH monitored by a doctor?
Post by millie the episodic on Jul 7^th, 2005, 12:09pm

I guess I have been going through too long, and I realize that there are others who have been going through longer, or could it bee that I am going through right now, who knows. I just find in harder to be or even find patience while going through. This thing affects ME, my whole body is tired, and I realize that some of it is the imitrex. What is kudzu and melatonin?

Title: Re: Has your CH monitored by a doctor?
Post by Kris_in_SJ on Jul 7^th, 2005, 8:40pm

Hi Millie,

Melatonin is an all natural supplement available at any grocery or drug store. It is marketed as a sleep aid, but also supplies an ingredient that clusterheads tend to be low on - called Seratonin. Many of us have found it to be a great help with those night time hits. It helps in getting past the intitial REM sleep that tends to bring on the beast. Most of us take between 6-9mg about 30 minutes before bed, though some take more.

To find out more about Kudzu, follow the threads under "Medications and Treatments" on the board. It's too complicated to explain in a MB response. You might find it very interesting though to read the threads - pretty long, but worth the read.

PF Wishes and many hugs,

Kris

Title: Re: Has your CH monitored by a doctor?
Post by Leggs on Jul 7^th, 2005, 9:13pm

Millie, 19 years with clusterheadaches, and check out the post under 1week on kudzu from me. It has busted the clusters?! I am so glad, ecstatic, I don't even have time to feel like a dumba$$ for not trying it sooner.

I am not saying it was easy, but it worked. I used to go in and out when I had clusters, but I am here to stay, so I can be here for support, to let you know IT WILL END, it not for life for an hour or so. Being in the middle of it, it's hard not to be frustrated.

Title: Re: Has your CH monitored by a doctor?
Post by sal_wife on Jul 7^th, 2005, 9:18pm

Hi Leggs - Just read your response re Kudzu. My husband just visited the doctor Tuesday. he is in week 6. The doctor just put him on Topamax and Relpax and riboflavin. Can I couple all that with Kudzu? I want to try anything I can do to help him. Thankss!! [smiley=huh.gif]

Title: Re: Has your CH monitored by a doctor?
Post by Leggs on Jul 7^th, 2005, 9:29pm

Well I gotta tell ya, it all depends on what HE can handle. I got off everything, but then again, I wasn't on much to begin with....

Are they really severe? I know if that kip 10 lasted more than just a day, I don't know if I could have handled it. It was on a Saturday too. I actually thought of blowing my head off, I knew it was just the clusters talking though, like the time I thought I could just run off the bridge on the way to the emergency room to get my head to stop hurting.

I would say it really depends on how bad he's doing, how severe they are. I was also hitting mine right at the beginning, knowing they were coming from shadows and the fact July was coming, and only having had them for a few days.

For me, getting on all the crap doesn't help me, some way, some how, it always makes me feel worse. One thing I want to talk to my new doc (going wednesday, part of the reason I had kudzu, I had no doc, I had no choice), is O2, has your husband tried that?

A doctor had me on a seizure medication that totally wacked me out made me disfunctional, and I couldn't hack it... Does the doc give him a time frame for all that mess helping????

Also, be sure to read all the links about the kudzu on the left.

One thing everyone here has stressed with docs and meds, does the doc have experience in specifically working with CLUSTERS????

Title: Re: Has your CH monitored by a doctor?
Post by sal_wife on Jul 7^th, 2005, 9:53pm

He is having extremely severe headaches. He says they're a 10. Yes, the doctor was recommended by two people from this site. we traveled 3-1/2 hours to see him because of his rep.
He's been using oxygen for years. Finds industrial oxygen works best for him. Kind of whooshes in. Tried everything, oxygen is still his first choice. The topomax is an antiseizure med and this is his third day on it. He's still getting headaches. They are definitely less in frequency. He says his "hair" hurts. Especially after the headaches.
Is kudzu from a health food store or drugstore or local drug peddler - tell me where to get it and I'll get it. Lisa

Title: Re: Has your CH monitored by a doctor?
Post by Leggs on Jul 7^th, 2005, 10:05pm

I go mine at a health food store, but will probably get the next bottle on the internet.

There were certain things the kudzu could not be mixed with, ie: triptans, the links on the left list them. Do you have a pharmacy that has an herbalist? We have a mom and pop place here that does that, so the know the reactions.

I also wanted to ask, when you said his hair hurt, have his headaches changed? The reason I asked is back in February, during my other episode, I have them Feb and July, my 2 week headache lasted 6 weeks, and the pain was different, it was more like a burning or electrical shock, or like something was crawling on my face. Also, it wasn't the up and down thing with clusters, the pain did not go away at all, and then on top of it, I would have the build up and down of clusters on top of it.

Read below...I went to a neuro who said I had TN, which I don't believe for various reasons, but SOMETHING new is going on. If nothing else, my CHs were predictable.

I am sure if his headaches are kip 10, he can't even verbalize whether or not they are different, but read below anyway.

http://www.umanitoba.ca/cranial_nerves/trigeminal_neuralgia/manuscript/types.html#atn

http://www.umanitoba.ca/cranial_nerves/other/index.html#on

Title: Re: Has your CH monitored by a doctor?
Post by nani on Jul 7^th, 2005, 10:24pm

Hi sal_wife. Welcome. Relpax is a triptan and it's not recommended to use triptans and kudzu at the same time. You can get kudzu root supplements at health food stores and online. If your husband has success with oxygen, it's the best abortive to use with kudzu. As far as Topamax, I'm not sure. I was on 1800 mgs of Neurontin (a similar drug) when I started taking kudzu and am completely off now (after tapering). Read all the kudzu threads that I've linked. I can't remember if anyone used kudzu and Topamax at the same time. Good luck and keep us posted, OK? Pain free wishes, nani

Read here:
http://www.clusterheadaches.com/cgi-bin/yabb/YaBB.cgi?board=meds;action=display;num=1110584362

Title: Re: Has your CH monitored by a doctor?
Post by don on Jul 7^th, 2005, 10:27pm

Quote:

Relpax is a triptan and it's not recommended to use triptans and kudzu at the same time.

Why is that?

Title: Re: Has your CH monitored by a doctor?
Post by nani on Jul 7^th, 2005, 10:30pm

Since kudzu and triptans affect the same 5ht receptors in the brain, it's possible that there could be adverse effects. Nothing about kudzu interactions is written in stone. Most of what we know is based on informed speculation (not by me, by those who are actually informed) and tester experience.

Title: Re: Has your CH monitored by a doctor?
Post by Topical on Jul 8^th, 2005, 12:43am

"I really wish they could feel it for about 5 minutes. " - millie the episodic

Bring a hammer and a chisel next time to him....oh and a piece of wood for whacking. I don't want to see you get arrested for battery.

"It has busted the clusters?!" - Leggs
That is fantastic news. Go Kudzu! I hope you can take off that question mark soon.

Careful with Melatonin. I am surprised it is available OTC.

Read the PRECAUTIONS section and ask your doc first.
http://www.pdrhealth.com/drug_info/nmdrugprofiles/nutsupdrugs/mel_0286.shtml

Title: Re: Has your CH monitored by a doctor?
Post by millie the episodic on Jul 8^th, 2005, 6:55am

I have just been researching kudzu and melatonin because I have been plagued day and night with these monsters for almost a week. I figure that I must be peaking bcause they are the bad ones that make you have to think not to hurt yourself, like poke your eye out or bust your head. i am taking imitrex nasal and or injector and also alternate zomig nasal, and O2 and loritab 5 as needed, and my friend MY ICE BAG, which is not enough but... I don't really see that these help quick enough because as I try to time them to see who wins the meds or the headhell , I find that I go through about 30 mins of headbanging before the meds take over. This makes for a long day when you have to go tt work the next day or night as I work shift work. Since I am having trouble with my doctor because I refuse to take topamax, because of how it makes me feel, I have to do what I think works for me. They told in on this precious site that I have to find my bullet, but I think I need a bigger bullet. If someones has found that herbs can be helpful in fighting this beast then I am more than willing to try them. But I must admit that it is a scary thought to have to do this with nothing else. All I can say is God Bless the Clusterheads!!

Title: Re: Has your CH monitored by a doctor?
Post by nani on Jul 8^th, 2005, 9:59am

on 07/08/05 at 06:55:17, millie the episodic wrote:

If someones has found that herbs can be helpful in fighting this beast then I am more than willing to try them. But I must admit that it is a scary thought to have to do this with nothing else.

Hi Millie...kudzu can be very helpful. It doesn't work for everyone (no med does) but it works for many. Kudzu and melatonin can be used at the same time, but kudzu and triptans probably shouldn't be. If you can tough it out for a day or so, you may find that kudzu makes a big difference in a couple of days. Welcome BTW and hang in there. PF wishes, nani