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Topic: My first real monster CH (Read 340 times) |
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samsara
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My first real monster CH
« on: Apr 9th, 2005, 2:06pm » |
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Hello everyone...
I was diagnosed with episodic clusters over a year ago after suffering for years. I won't go into the long story of getting to a diagnosis, but after I was diagnosed I did a ton of research and found this forum, joined but never posted. I was perscribed prednisone to break the cycle I was in at the time I was diagnosed, and verapimil to keep the beast away, but dropped it all immediately when I found http://www.clusterbusters.com/ as I am a huge advocate of treating the body with natures medicines. And I have a funny little story about that, but I will share it another time.
Luckily my clusters are episodic, and while I always found my headaches to be annoying and sometimes even distressing I have only had what I consider really bad pain a few times. I always wondered if I was just lucky, had a high pain tolerance or if so many others were just whiners. (no offense intended)
Well, yesterday I had the mother of all clusters and I can say I have a new found respect for all of you.
Historically my clusters have followed the typical pattern... one around noon, and then if that one is bad I will start having them at about 8am and 8pm like clockwork. I don't know what happened yesterday, but I woke up with a shadow and had a (for me) full blown cluster by ten am... very annoying and distracting. Well, it never started abating, and by noon I was in a whole new territory. At 1:00 I realized this was worse than my previous most painful experience of childbirth. By 1:30 I was beyond myself, up and down, clenching my head, barely able to keep from pounding it against anything and everything. And then my husband came to the rescue with .3g.... my pain dropped from a 9-10 to a 6 at 2:42, and then at 3:30 it was completely and suddenly gone. For the next hour I cried I was so relieved, and I could not believe how simply wonderful it felt to feel nothing at all.
Anyway, I have never posted here but I felt that after that experience I needed to share with you all my respect, understanding and comraderie. I am almost moved to tears now just thinking about yesterday, and I am counting my blessings that the earth has given those of us who choose such a wonderful treatment option.
To whoever started this forum... thank you, thank you, thank you!!
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lionsound
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Re: My first real monster CH
« Reply #1 on: Apr 9th, 2005, 3:36pm » |
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Hello samsara,
Sorry you were in so much pain yeaterday.
this place IS great isn't it? I really like it here too.
The one thing that struck me about your post was the duration of your HA yesterday. I don't know if you still have a neuro if you are using alternative treatment(thrilled it working for you  ), but it might be a good idea to at least call a doctor and describe what happened to you. I've always been told by all my docs that if I get a HA that is unusual for me, then a little red flag should go up and get it checked out. Especially if its' the worst Headache/pain I've ever had. Which is pretty much how you just described yours.
I'm glad you finally posted. It's very nice to meet you.
May you be well and PF,
lionsound
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samsara
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Re: My first real monster CH
« Reply #2 on: Apr 9th, 2005, 5:24pm » |
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Thank you ls..
It was unusual in it's behaviour, but most certainly a CH. One sypmtom I have read over and over that comes with CH's for many but never for me until yesterday... my right nostril started running as the headache was hitting it's peak.
I did think it was really weird that it lasted Soooooo long... usually my HA's run about 1 - 3 hours. When I got a shadow around nine am, I thought it odd that I would be getting a shadow for a headache that early in the day when my previous days had been pf... if I'm starting a cycle I usually have a few days of headaches only around noon before I get the 9am and 9pms also.
I have had a shadow on and off since yesterday around 5:30pm, it makes me nervous after yesterdays pain... WOW I don't want that to hit me again, you know? But so far today has been fine, just a hint here and there but I am sighing a huge sigh of relief that I have made it past the noontime headache. Usually, if there is no headache in the middle of the day, there are no headaches at all.
Anyway, is it odd to have a cluster for so long? I guess the worst part lasted three to four hours... with the total counting shadow lasting 6.5 hours.
I never saw a neuro doc.. my new doc nailed it right away interestingly enough. I guess I am lucky. A few very detailed questions and she said "it's uncommon, especially in women, but sounds like this..." and then I went in for an MRI of my brain "just in case" and she put me on prednisone and verapimil, saying if they didn't work to come back in right away. I have never been back for the HA's, a nurse from the office did call me some time later and asked if everything was working out and I said yes, I had found some alternative theriapies that were working great and she said good and never asked what.
I guess it might be adviseable to follow up after this last attack. The only thing that I wonder.. when they ask what I took and if that helped I'm not sure what to say. I guess it could only help if a doctor was to hear this, hopelfully it won't be the first time. Part of me wants to scream this from the roof, it is so simple, so harmless and so helpful that the world should know. It has been such a blessing for me. I also have frustrations with this goofy government we have here, that thinks they have a right to legislate what people do with their own minds and with their own bodies but I am sure this is not a foreign frustration on this forum so I won't get into that.
I'm sure folks here have told their MD straight out if they use alternative therapies.. What sorts of responses do you get? I guess I am just a wee bit concerned... I don't need sideways looks, altho I guess I shouldn't really care, eh? 
Thank you again... I hope to spend some time here now that I really know how devastating this can be. I guess I was lucky for a lot of years, not ever being hit full force and I certainly feel so much for all of you who go thru this every day. I will be sure now to count my blessings, and to wish many upon the rest of you.
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Kris_in_SJ
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Re: My first real monster CH
« Reply #3 on: Apr 9th, 2005, 8:05pm » |
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I'm thinking you really need to know your doc pretty well before you admit to the alternative treatment. After a number of cycles, I mentioned the Harvard study to my doc. His response was .... "hmmmm".
On the other hand, I've known of couple people here who wished sincerely that they had told their docs.
Unless you've had poor success with standard treatments like Verapamil, Prednisone, Trex or Oxygen, I think I'd hold off on telling that something illlegal is your savior. However, I think it's worth mentioning that you've had a headache that's out of the norm for you.
You might try a PM to Pink Floyd about what you've experienced. He has a wealth of knowledge about shrooms and might have some answers for you.
PF Wishes,
Kris
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I'm a small woman in small town being chased by a VERY BIG BEAST!
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samsara
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Re: My first real monster CH
« Reply #4 on: Apr 10th, 2005, 8:19pm » |
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I actually don't use any of my perscribed treatments any more.
The prednisone is heck on my joints, altho I would definitley take it to break a cycle if I had to. I can't see taking verapimil.. a blood pressure med.. when I have low blood pressure to begin with. Just doesn't seem like a wonderful idea to me, the day to day risks of standing up and having my BP drop and passing out.. especially since my success with a specific alternative therapy has been nothing short of wonderful.
For me, I consider my chosen treatment to be the least risky of all options, and certainly least expensive.
Anyway it leaves me in a tough spot, to go into my doc and tell him I had the worst HA of all time but have no symtoms of CH's now and that additionally, it wasn't allowed to run it's course and resolve itself because I aborted it with an... ehem... alternative therapy whose identification will remain nameless...  Jeez, this seems rediculous to me.
*sigh*
Well, I will mention it at my next appointment. In the mean time, I think I will start looking for this kudzu everyone talks about. Imagine my husband's shock when I told him about it.. he is from Georgia so he is no stranger to it!
Thank you all for your help and knowledge.
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lionsound
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Re: My first real monster CH
« Reply #5 on: Apr 10th, 2005, 8:40pm » |
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hey, samsara!
I hope you are feeling better.
I just now thought of something which might be useful to you.....
a headache journal/log. Do you keep one? (HA, meds, duration, date)
It's a really good idea, especially since you've had the one longer HA and now will be trying Kudzu. you can also track you alternative meds too.
be well,
lionsound
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samsara
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Re: My first real monster CH
« Reply #6 on: Apr 11th, 2005, 11:01am » |
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I'm feeling much better, thanks for the wishes. Actually, I have been pf since friday, but that is typical after using an alt. therapy for me. I expect that I will be pf for a few weeks now, barring any sugar overdoses. That seems to be a trigger for me.. that and wine.
I started keeping a journal about a year ago, that only lasted thru one cycle. I was thinking this weekend that I really should keep a journal to help both myself and the MD's helping me.
Thanks for your pf wishes, wishing you the same...
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Giovanni
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Re: My first real monster CH
« Reply #7 on: Apr 11th, 2005, 11:33am » |
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The .3 grams you had taken was more or an abortive dose than "knock the cycle" out dosage. The alternative treatment has brought to me at least a 90-95% pain relief. In the past 15 months or so I've used one imitrex injection over hundreds in the previous year. Most activity that I have now (when cluster activity is present) is in the kip 1-3 range versus 7-10 range as before. The very best of luck to you whatever method you use.
John
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