Author |
Topic: Finally some help! (Read 70 times) |
|
Dano
New Board Newbie
I'd Rather be Fishing
Gender: 
Posts: 3
|
 |
Finally some help!
« on: May 29th, 2007, 12:16am » |
 Quote  Modify
|
I'm new to this site and like to say, Thank You. This is my first post and I'm sure many more will follow.
I have been suffering for @ 4 years now and also thought it was migraines due to sinus. Until my wife also found your site yesterday & I know now that I'm a Clusterhead to the bone. The last visit to the Doc last year he thought it may CH instead of migraines and prescribed Imitrex.
This is the most painful thing I have ever had to deal with. I have had sever back spasms in the past that kept me in the bed for day's and it is nothing like a sever CH. I'd take a back spasm any day over a CH. I was feeling like a wimp when I would get these CH's. Now I know I'm not alone and crazy.
It seems to run in my family. I was told my Grandfather had bad migraines as well as his son. I recently found out my younger brother suffers with them also.
Here is my history:
I'm 48, smoker & trying to quit, non drinker although I do like a cold one on a hot day & found out a beer during the cycle will give me a killer CH.
I have CH's cycles 2 to 4 times a year, spring, fall and cold snaps. They last up to 2 months and taper off.
CH is sometimes on left side and other times on right side. Last night I had one that started on the right side and moved to the left side. A real bad one that lasted over an hour. My wife found me on the floor in tears and it really upset her. She is usually a sleep when I have my bad ones. She has seen me suffer before but not as bad as I was last night. I can almost set my clock by the attacks. I hate to go to sleep knowing I will wake up with a CH but I do and deal with it and I know I'll get one @ 1:00 to 2:00 PM.
Things that I have found that helps, very hot bath to submerge my head helps if I catch it early. Hot damp cloth from the microwave to put on my head, eye, temple and back of my neck. Hot coffee. Of course Imitrex to keep it away for a few hours. Pain pills helps knock off the edge but I don't like to take them unless I have to.
I have been to the doctor in the past & gave me Imiterx. Had CT scan, nothing. Had sinus med., nothing. I have a appt. Wednesday to see the Doc. again. I'm almost out of Imitrex and it scares me to know I may run out. I will talk to him about some preventive meds. that I have read about. The doc did have me try some beta blockers but they seemed to make the CH more frequent and worse, so I stopped taking them. I'm ready to try something else for a preventive. I will also ask the doc about where I can get some oxygen and mask from. This sounds like it has good affects in stopping the CH before it gets to bad.
I'm happy I have found someone to talk to about CH that knows what I'm going through. It is hard for anyone to understand what a CH is unless they have one. I just tell them it is like a very bad brain freeze when you drink a ice drink but much worse and can last up to an hour.
I do see from this site that there are some that have CH worse that I do. I can not imagine having them all the time.
Thanks for letting me join your support site. It has been so helpful just in the last two day's. Now I know I'm not alone.
|
| « Last Edit: May 29th, 2007, 12:29am by Dano » |
 IP Logged |
|
|
|
Linda_Howell
CH.com Alumnus
New Board Hall of Famer
Hearing is one thing. Listening is another.
  
Gender: 
Posts: 6721
|
|
Re: Finally some help!
« Reply #1 on: May 29th, 2007, 7:43pm » |
Quote Modify
|
Quote:I will also ask the doc about where I can get some oxygen and mask from. This sounds like it has good affects in stopping the CH before it gets to bad.
|
|
This is first and formost in our 1st. line in abortives.
Pure oxygen with a non-rebreather mask and make sure your Dr. specifies a regulator that goes to 15 Liters per min.
You live in Baton Rouge:
Here is a nationwide supplier in your area.
Lincare
6123 Benefit Dr.
Baton Rouge, LA. 70809
(225) 756-5110
Good luck to you. Linda
|
|
IP Logged |
Kindness, is gladdening the hearts of those who are traveling the dark journey with us.
|
|
|
Annette
CH.com Alumnus
New Board Hall of Famer
Veni Vidi Velcro
Gender:
Posts: 1874
|
|
Re: Finally some help!
« Reply #2 on: May 29th, 2007, 10:06pm » |
Quote Modify
|
Hello Dano
Welcome and hope you are feeling better today.
It sounds like you have your headaches pretty much under control but I second what Linda said about oxygen, its now considered first line abortive for CH. Please talk to your doc and get some, so that you wont need as many trex injections.
What I am curious about is how often does your CH switch side? I have heard it happening to some people but its not common. Is it a common occurrence for you? You also said it can switch side during an attack, has it happened a lot? Is there any difference to the characteristic of the headache when its on one side compared to the other?
Thanks for sharing your experience, its great to be able to learn from one another.
Best wishes to you and hope this cycle is short and mild.
Take care.
Annette
|
|
IP Logged |
Mediocrity knows nothing higher than itself; but talent instantly recognizes genius.
Arthur Conan Doyle
|
|
|
Dano
New Board Newbie
I'd Rather be Fishing
Gender:
Posts: 3
|
|
Re: Finally some help!
« Reply #3 on: May 29th, 2007, 10:34pm » |
Quote Modify
|
Hi Annette,
I will ask the doc about oxygen tomorrow.
I have never had any trex injections. I was only given the pill. The trex pill would knock it out in @ 20 min. if I took it very early before but not lately. This past weekend was the worst. I never had a CH start on one side and move to the other side before. It was the worst. After one trex and two pain pills it eased off after a hour.
The characteristic of the CH is the same on both sides. Last cycle it was on my left side. This cycle it has been on the right side till it rolled over to my left side the other night.
I when the CH first started a few years ago, I did not pay attention if it switched sides. There were a few months between and I'd forget which side it was on. I was under the impression it was migraines due to allergies. It was only till my last visit to the doc last year the he suggested it was CH. He gave me a script for trex and I went home.
I did look on the web some last year to try to find some info but not much luck or help back then. I guess my cycle tampered off and I went on.
I'm so glad I found you guy's. It is like living with the Devil. This past weekend was the worst and the most CH I had in a few day period. I was just waiting for the next CH to hit. It was scary.
I have not had CH since late Sunday night and early Monday morning, although I did have shadows all day Monday. I made it thru work today with none, thank God. I have been drinking lots of H2O since I read the post on how it may help. Weather it made it stop or not, I don't know. I'll keep drinking for a few day's any way.
Thanks Annette & Linda for your reply, & I will check on the O2 tomorrow.
Hope you all have a good night and PF.
|
| « Last Edit: May 29th, 2007, 10:45pm by Dano » |
IP Logged |
|
|
|
ClusterChuck
CH.com Alumnus
New Board Hall of Famer
The BEAST rises again, and again, and again, and .
Gender:
Posts: 3181
|
|
Re: Finally some help!
« Reply #4 on: May 29th, 2007, 10:57pm » |
Quote Modify
|
Welcome aboard, Dano!
Most of us find that the imitrex pill works too slowly. Ask for samples of the imitrex stat pen self injectables. Some say it aborts within 3 or 4 minutes! A max of ten minutes, and it is GONZO!
on May 29th, 2007, 10:06pm, Lotus wrote:| What I am curious about is how often does your CH switch side? I have heard it happening to some people but its not common. Is it a common occurrence for you? You also said it can switch side during an attack, has it happened a lot? Is there any difference to the characteristic of the headache when its on one side compared to the other? |
|
Annette, and you too Dano, I have been having them switch sides now for 2 years. When I was over in Norway, in 2005, I spoke with Norway's cluster headache specialist (Svenn will know his name) told me that it is not as rare as many believe it to be.
I never know which side I am going to get hit on, although it is SLIGHTLY more prevelant on my normal (?) left side.
There are some times (like yesterday) where I get hit on one side, and then as soon as that one ends, it starts on the other side, and then back again, once that one is finished. I had a series of these, going back and forth for four full hours!!! Oxygen would not touch them. Although they were only in the KIP 7 & 8 level, they went on for so long, death was VERY appealing. Good thing I don't have guns in the house!
Those long, bounce back and forth hits, are the ABSOLUTE worst!!!
Chuck
|
|
IP Logged |
"No man can be happy without a friend, nor be sure of his friend till he is unhappy."
Thomas Fuller
|
|
|
Dano
New Board Newbie
I'd Rather be Fishing
Gender:
Posts: 3
|
|
Re: Finally some help!
« Reply #5 on: May 29th, 2007, 11:23pm » |
Quote Modify
|
Chuck,
I have only had it switch from one side to the other during a CH for the first time the other night and I would say it was in the KIP 8 & 9 at peak. I could not imagine it going on for four full hours as yours did. I don't know if I could survive it. I pray for ya.
How long do the trex injection last? I find the pills before would keep them away for @ 6 to 8 hours sometimes. Although last weekend, that time frame was a short as 3 hours.
Good Luck to you Chuck
Dan
|
|
IP Logged |
|
|
|
BarbaraD
CH.com Alumnus
New Board Hall of Famer
Hugs to ya
Gender:
Posts: 5164
|
|
Re: Finally some help!
« Reply #6 on: May 30th, 2007, 12:51pm » |
Quote Modify
|
Dan,
I'm with the others on the O2. 15 liters with a non-rebreather mask.
I usually chug-a-lug a can of Red Bull and hit the O2 as a first line of defense.
For all the years I've suffered mine have always been left sided UNTIL this year and all of a sudden I was a righty. My shadows are still left sided, but I got hit bad on the right side. It was really weird. I think they've switched back now, but can't even be sure. Have been hit a few times on the right lately also. Weird! (BTQ - like Chuck and LInda I'm chronic).
You might also ask your doc about a predisone taper. This works for a lot of people while they're getting the prevents into their system.
Glad you found us, but sorry you have to be here.
Keep us up to date.
Hugs BD
|
|
IP Logged |
What don't kill ya, Makes ya stonger!
|
|
|
|
|
|
Home
Help
Search
Members
Member Map
Login
Register
Reply
Notify of replies
Send Topic
Print
test rss