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clusterjack
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Some experienced comments
« on: Mar 20th, 2006, 6:16am » |
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Hi There
This is my first post on here, so be gentle  I am currently suffering my second round of clusters, the first one being last year.
This morning I went to go see a good neurologist, who gave me an injection into the back of my neck, just below the skull. It was near some nerve, and he said that this has a very good chance of ending the entire round of attacks. Has anyone had any success with this?
Secondly, he says in the future, because my attacks are a predictable pattern, I can take melatonin (i think thats what it was) to help my sleep cycle, and this also has a good chance of preventing a cycle from starting. What does anyone know about this?
Lastly, and most importantly for me. I am only 21, and at the moment my attacks are quite mild. What experience have people had with attacks that started early, have they gone away, or intensified? I am expecting that the majority of users on this site suffer extreme headaches so the result might be slightly biased.
But please let me know from all your experience guys!
Thanks
Love ya
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BarbaraD
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Re: Some experienced comments
« Reply #1 on: Mar 20th, 2006, 7:47am » |
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What kind of injection?
Melatonin (9-12mg) is good for getting you thru the REM sleep. A lot of us take that at night.
Sorry you're getting hit so early. Some have outgrown them, but some haven't.
O2 is the choice of many for aborting.
give us more information....
Hugs BD
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Jasmyn
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Re: Some experienced comments
« Reply #2 on: Mar 20th, 2006, 8:09am » |
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Hi Jack and welcome.
I'm a South African living in Mozambique and I'm really sorry that you are meeting us under these conditions but this is the best place for clusterheads.
Who is the neuro that you went to see? The injection was probably a mix of cortisone and an anti-inflammatory or muscle relaxant?
I used to get those as well but they never seem to abort a cycle but then again that is only my personal experience and some meds works better for some people than others.
Like Barbara say many of us use Melatonin at nights and Oxygen can be prescribed by your neuro.
As for the intensity and frequency of attacks, everyone differs.
All the best and wishing you pain free days and nights.
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Jazz
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JohnM
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Re: Some experienced comments
« Reply #3 on: Mar 20th, 2006, 8:34am » |
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Hi Jack - welcome from a fellow South African.
Sorry you are also a sufferer.
I cannot comment on the injection in the neck (what was it they injected?) or melatonin since I have tried neither. Did you discuss the self injected form of Imitrex with your Dr. This works to abort a severe CH within less than 10 mins for many here. The down side is they are very expensive.
I can say that the intensity and frequency of my CH did increase over the years. In my 20's I was still able to work during an attack, albeit under extreme pressure from the pain when I got hit and it would usually abate in an hour or so, but come back again a few hours later. My later attacks left me unable to function on any level.
Lots of stuff to read here to gain more knowledge on this subject.
You are lucky in a way that you found a Dr who diagnosed the symptoms. It took me until I was 45 and numerous Drs before I got a name for this affliction.
John
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unsolved1
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Re: Some experienced comments
« Reply #4 on: Mar 20th, 2006, 8:52am » |
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The injection you had was probably an "Occipital Nerve Block". I've had 7 or 8 of them, only the first helped for 17 days.
My clusters began roughly, but I was only an episodic at first (for 12 years), then it got bad 
Goodluck
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ABarham
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Re: Some experienced comments
« Reply #5 on: Mar 20th, 2006, 11:14am » |
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Hey Jack. I sadly welcome you. Please do not take anything that I tell you as absolute. I too am new here. But the information and careing and help has given me a wealth of knowledge. Also, in watching my son get some relief through what we have learned here has been amazing. I am not a sufferer, my son is. As far as melatonin, he has recently been using it and it does seem to be helping. It is also a sleep agent, therefore, he started out with one (3mg.). A week later, over the weekend, he increased to two (6 mg.). It was a good thing he had no obligations that day because he was tired all day. He has gone back to one and will probably try one and a half this weekend. Everything you read about here is meant to give you any and all information which may be of benefit. It is important to remember that nothing works the same for everyone. It is definitely a trial and error thing. Some things take longer to work than others. You can't try too many things at the same time because you wont know what is working and what is hendering.
Hope you find some relief here. It is a wonderful family and here to help.
Mama Weezer
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Louise
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Bob P
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Re: Some experienced comments
« Reply #6 on: Mar 20th, 2006, 12:32pm » |
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on Mar 20th, 2006, 6:16am, clusterjack wrote:Hi There
Lastly, and most importantly for me. I am only 21, and at the moment my attacks are quite mild. What experience have people had with attacks that started early, have they gone away, or intensified? I am expecting that the majority of users on this site suffer extreme headaches so the result might be slightly biased.
But please let me know from all your experience guys!
Thanks
Love ya |
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I also started my cluster at age 20. For 20 years I would have a 4 week cycle every 8-9 months. When I turned 40 the cycles jumped to every 2 years but the length was unpredictable. At age 55, my last remission was 3 years and 3 months long but the cycle that came after that remission stayed for 20 weeks.
As my first neuro said, with any luck you will outgrow them in middle to old age.
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StressFree
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Re: Some experienced comments
« Reply #7 on: Mar 20th, 2006, 1:16pm » |
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Welcome to the site Jack,
I'll try to be brief (note 'try'). I was chronic starting around age 15. One attack each day in the morning like clockwork. Usually about a KIP 7. Tearing eye, but mostly bearable and usually able to function knowing in 45min to 1 hour all would be fine again.
Had misdiagnosis of every sort until around 21 years old a headache specialist diagnosed properly and broke my chronic attacks with verapamil and CafergotPB. I hate to say it, but in my case while chronic the attacks became more severe over time. However, I was also taking every kind of pharmaceutical and street drug I could find through that time period. Part of the drug abuse issue had nothing to do with clusters, though it was a convenient excuse.
After chronic attacks were broken up, cycles seem to be further and further apart (Thank you God!!!-He's also responsible for getting me away from the drug abuse . However, the intensity is always very bad with frequent 9 to 10's and multiple attacks day and night while in a cycle. Very difficult to treat while in cycle as well. Verapamil, Prednisone, Maxalt, Pain drugs, and TENS (electrical stimulation) often used in conjunction or alternately until cycle ends. I have gone up to 6 years without a cycle. I'm hoping that doubles again (or that that was it for me)! When a cycle does arrive, I'm in for a solid 6 to 8 week battle.
Prayers for you and yours, Rich
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clusterjack
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Re: Some experienced comments
« Reply #8 on: Mar 20th, 2006, 2:57pm » |
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Hey all
Thanks for the quick and many replies!  Its really awesome. Ill try answer as many of your questions as possible.
The injection I had was indeed a Occipital Nerve Block, im not sure what it was that was injected, but I can find out. I will let you all know whether it works or not. I guess time will tell.
The neuro did however seem very confident that it would abort the cycle, Im hoping he is right. I can deal with the cluster headaches I am experiencing at the moment, but I am terrified that they will intensify like all yours.
Dont worry about me, not experiencing too much pain at the moment! Its the future thats the problem!
Cheers
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BarbaraD
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Re: Some experienced comments
« Reply #9 on: Mar 20th, 2006, 8:39pm » |
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Well, here in Clusterville, we quite a dysfunctional family, but we're here 24/7 and we've always got support, empathy and advice. And when we say, "We know how you feel," you'd best believe us -- someone has been there.
Stick around, read up on everything and just hang in there.
Hugs BD
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clusterjack
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Update
« Reply #10 on: Apr 12th, 2006, 6:24am » |
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Hey all
Havnt logged in for a while because I have completely forgotten about my ch's.
The occipital nerve block definetly seems to have helped as I havnt had one attack since! Im not sure if it will help everyone as my headaches are still in the early stages and were quite mild, but if you havnt tried it I would recommend it, its worth a try.
Hope you all find a way to deal with the pain!
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burnt-toast
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Re: Some experienced comments
« Reply #11 on: Apr 12th, 2006, 8:50am » |
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Not sure about the injection - ask your doc. for more information on treatements being proposed. You should know everything possible about what is being done to you.
I'm not sure Melotonin will stop a cycle from beginning however pre-cycle treatments with preventatives and including Melatonin some say may have merit. Everyone suffering from this disorder seems to respond differently and only time and some good record keeping is going to provide you with this answer.
As with most folks suffering from CH its going to be different. Some claim CH fades with time, some say it intensifies yet others say it stays about the same.
You should have picked another disorder if you wanted solid answers. but at least you found other in the same boat with you.
Best wishes,
Tom
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NotH20
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Re: Some experienced comments
« Reply #12 on: Apr 12th, 2006, 10:55am » |
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Hey Jack.....
Not sure about the injection or Melatonin - never used either one of them. Started with ch back in 1980 - diagnosed in 1984 and am episodic. I have them every 18 months for about 4 months at a time. I have noticed, unfortunately, that each cycle is a little more intensified w/ the pain level  I just can't imagine being 85 years old and having such pain. I'm hoping I'll grow out of them at some point LMAO!!!!
Good luck to you - sounds like the shot is working for you. Keep us posted.
Mia
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