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Topic: My own CH update... (Read 260 times) |
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Lizzie2
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My own CH update...
« on: Aug 3rd, 2007, 11:57am » |
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I haven't started a thread here in ages, and today I'm starting TWO! Wow...
So anyway - back in April, I went to 3 days of outpatient infusions, and that had really helped my clusters. Unfortunately, I had to go up on my meds in order to get the migraines under better control, but for awhile, I thought we'd finally gotten the clusters under control! I was getting them sparsely - with some days not having any attacks. Not enough to go into a remission, but just much much better than they were!!
Until about 2 weeks ago...
The first really bad one that hit me, I almost thought it was a fluke. Now I'm getting hit multiple times a day - even during work, which is rare for me. Usually I take a frova or amerge in the morning at work in order to hold the CH off, but now they're even breaking through those.
On Wednesday, I went to the NP at Jefferson Headache Center - she is so great!! She gave me nerve block injections, and I'd just started an attack right before she did that, and it stopped it....at least temporarily. After leaving the headache center, I had to go get some xrays and lab work done, and while waiting for the xrays the bugger came back with a vengeance - it was weird because the nerve block was definitely having some effect on it, but somehow it was still hurting and breaking through.
The NP is having me do DHE injections twice a day for 3 days, but I can't take triptans within 24 hours of the DHE. This means I haven't been able to start the DHE yet. When the cluster broke back through the nerve blocks, I had to take a triptan because I didn't even have my DHE script filled yet. Then yesterday at work, I got hit twice and had to take a triptan. I work this weekend so I figure maybe I'll try it at the end of next week when I have several days off in a row. We've also started me back on verapamil - for now just working up - only on 40mg three times a day and working to 80mg three times a day, but I assume we'll go higher if needed. We have other options if all this doesn't work, but I'm hoping that it does!!
The increase in clusters for me means a much worse migraine, too since every hit I get bumps up the baseline of my constant migraine - making things very difficult to bear as when the cluster leaves, I'm left with a very bad headache in between. Buggers...
The NP said that a LOT of people in this area have been having problems. Normally my worst times of year are fall and spring, even though I'm chronic, so I was surprised when it started up mid summer. She said she's been seeing about 1 CH patient a day at the clinic!! And she said the CH'ers alone don't usually need to be hospitalized, but several have been lately - including our Lisa. So I don't know what it is about this area right now, but I sure wish we could figure out what triggered the lot of us!! This is definitely sucky!!
So that's my update!! I'm keeping my fingers crossed that all these changes help!!
Hugz,
Carrie 
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sandie99
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Re: My own CH update...
« Reply #1 on: Aug 3rd, 2007, 12:03pm » |
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Carrie,
thanks for the update!
I sure hope that the changes will make all the difference and things will change for the better for you.
Lots of hugs & PF days,
Sanna
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CH happends, Live anyway! PF days to us all!
"Do what you can and let God take care of the rest. Leave your heart wide open and always wish for the best" (Sanna Hillu)
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DennisM1045
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Re: My own CH update...
« Reply #2 on: Aug 3rd, 2007, 12:40pm » |
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Hey Carrie,
I'm sorry to hear you're getting womped like that. I get the same after CH migraines too. It just adds insult to injury doesn't it. Well it sounds like you're all over the beast. I hope you find some relief soon. I'm sending ((((Hugs)))) and PF wishes your way.
-Dennis-
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Rosybabe
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Re: My own CH update...
« Reply #3 on: Aug 3rd, 2007, 1:15pm » |
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So sorry Carrie the beast is giving you such a hard time 
pain free wishes your way sweetie
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Callico
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Re: My own CH update...
« Reply #4 on: Aug 3rd, 2007, 2:09pm » |
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Praying for you. Hope it breaks soon and for good.
Jerry
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HappyElaine
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Re: My own CH update...
« Reply #5 on: Aug 3rd, 2007, 2:24pm » |
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Fighting both clusters and Migraines suck. Its bad enough with just one to fight. Good luck and we pulling for you !
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Kevin_M
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Re: My own CH update...
« Reply #6 on: Aug 3rd, 2007, 5:38pm » |
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I hope the verapamil can soon make a difference for you Carrie.
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sldrswyfe
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Re: My own CH update...
« Reply #7 on: Aug 4th, 2007, 3:53pm » |
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Carrie,
That is odd...for the first time in fourteen years, I was hospitalized last weekend...due to severe dehydration.
In addition to chronic CH's, I've developed a persistent right-sided migraine (Im a leftie with CH's), that last 3-4 days. This has been happening for about two months.
It happens twice a month too. I toughed out three episodes...but last weekend, I just couldn't mentally handle it. And I live alone and was having alot of trouble.
I start vomitting and then cannot stop dry-heaving and gagging....of course, leaving me unable to hold anything down. I ended up WALKING to the hospital, which is about a mile away!! God had to be carrying me...
Anyway, the first day, they gave me IV anti-emetics, saline..but nothing for pain. I really, honestly wanted to die.
The second day they did the same...but added 4mg of morphine..WHAT A MISTAKE!! Immediately, I felt strange...my legs cramped, they bent and I coudn't un-bend them, my stomach turned, my mouth tasted like metal...and I couldn't breathe...not just "a little difficulty breathing", gasping for air, with my chest feeling like it was being crushed. I really believe if the dose was higher (of morphine), it would've been very serious.
After my breathing stabilized, and the other symptoms I was very anxious and restless...and that lasted for hours.
In a way, Im glad it happened...it opened a door of communication and understanding with me and my family Dr. that wasn't previously there. I put an emergency call in for him Sat. evening...and then had an appt with him on Monday. Being that the Dr's at the hospital had little understanding of CH and didn't know me...they really didn't care for me appropriately...(I left OUCH info and CH.com info with them), my dr. told me if I ever go through that again, to first call him, and he will call the hospital and fill them in on me ...that in itself is a big comfort.
Very strange that many of us are going through a tough time. I have gone to Jefferson too..Dr. Young was my neuro. I have an appt. with Silberstein in about a year...that's how long the waiting list is for him...I can't wait to meet him.
I hope you are doing much better. Sherri
**something else interesting...the woman that registered me has CH's!!! But, doesn't know much about them...she has just been tolerating them...of course I told her about CH.com...I really hope she gets on board
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| « Last Edit: Aug 4th, 2007, 4:01pm by sldrswyfe » |
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Opus
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Re: My own CH update...
« Reply #9 on: Aug 4th, 2007, 10:18pm » |
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Carrie,
I hope you get relief soon. It might not just be the area, I am in high cycle too. I just broke my record with 9 hits in a day. I have to try to get to a center that can treat me, the local Nero says I am beyond his abilities.
Paul
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MR_FLOOR
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Re: My own CH update...
« Reply #10 on: Aug 5th, 2007, 1:24am » |
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When I was in the hospital for my histamine desensitization I met a woman who had clusters and migraines she said that the migraines would trigger the clusters,is this true for you as well.
Dave
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rolo65
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When I quit the triptans, my migraines went away. I think it was a rebound type side effect though. I never had migraines until I became chronic with the CH, and using triptans for aborts. Thank GOD for oxygen!
PFD&N all,
Roland.
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sldrswyfe
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Re: My own CH update...
« Reply #12 on: Aug 5th, 2007, 7:41am » |
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Mr. F,
I don't want to be presumptuous, (I don't want to be rude either, if you are asking me a question)...if you are:
The migraines do seem to "trip" CH's...it turns into a big mess...like a ride from hell that you can't get off of.
Rolo, I tried triptans, and no longer take them. I have tried so many meds, and chronic pain treatments with a ZERO success rate...I have been reasearching the surgeries offered...occipital (back of head), super orbital (around eye)...and DBS.
DBS, I just don't know...being that the sensor is put into your brain...and there's no guarantee it will work. From what I've read and heard:20 chronic CH's have had it so far, 17 said it helped, one died. I have no idea what the opinion of the 2 people that didn't comment is.
I have been speaking to someone who personally had occipital and super orb...neither has worked. And the "temporary" surgeries leave wires hanging out of your head, with a phone-like chord you attach to a battery pack. I cannot imagine.
You have to go that route first, to see if it's worth making in permanent, in that case, the devices are put in the head, and the battery pack is placed in the abdomen...like a pacemaker. It's alot to consider.
And yes, thank God for Oxygen...I wonder how they realized it worked...but to whomever did...THANK YOU!!
**You are also "awake" during the surgeries!!! The surgeon has to know if the device is in a comfortable position....yikes.
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| « Last Edit: Aug 5th, 2007, 10:58am by sldrswyfe » |
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"Great spirits have always found violent
opposition from the mediocrities." -Einstein
"I'll DIE on MY FEET, before I LIVE on MY KNEES"...thanks Jonny...that meant alot
"Oh, say does that star spangled banner yet wave?"....Your damn right it does.
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