Author |
Topic: newbie mom (Read 271 times) |
|
singalou
New Board Newbie
Gender: 
Posts: 2
|
just a note to say, "HELLO" and to let you know how useful this message board has been in the past four days. My son just graduated from HS and has just recently been diagnosed with clusters....this is his first cycle and we really don't know what to expect as each day comes and goes. He is in enormous pain and oxygen/imitrex tabs seem to do little at this point to be helping him through. I can hear in his voice that he is scared and feels defeated by them already. From what I read, there really is no "cure" for clusters, but all seek to just control the pain as it happens...some with better luck than others in finally finding what therapy/therapies work for each individual...?? It really sucks (sorry...wondering if that will be edited out) as a mom to watch helplessly. We can't get into the neurologist until Monday at 4:15 and am worried we're not going to make it through the weekend without an ER trip for pain control. Any suggestions for a first-time cluster cyle? Any help would be greatly appreciated!
|
|
 IP Logged |
|
|
|
Richr8
New Board Hall of Famer
It's all about today...
Gender: 
Posts: 1396
|
 |
Re: newbie mom
« Reply #1 on: Jun 9th, 2006, 4:30pm » |
 Quote  Modify
|
Hi Singalou!
I am so sorry to hear that your son is suffering so much. Get him to this board as soon as you can. Many of us find our own way once introduced to this community. Make sure you read this info before your appt. on Monday.
http://www.brightok.net/~mnjday/chtherapy.pdf
You'll have a good understanding of what treatments are availabe. Also, If you are using O2, a Clustermask will really make a big difference in how effective the O2 is. The Clustermask is highly recommended by everyone that has one. You can find the Clustermask here::
http://homepages.nildram.co.uk/~tritech2/clusterx/index.html
Good luck, and get your son in here. I'm sure you noticed that there is also a supporter's board for folks like yourself.
|
|
IP Logged |
pf wishes,
Rich
...because yesterday is history and you never know what tomorrow will bring.
"Med free"- A few seeds and lots of O2-LG but not great.
|
|
|
Bob_Johnson
New Board Hall of Famer
Gender:
Posts: 1796
|
|
Re: newbie mom
« Reply #2 on: Jun 10th, 2006, 7:06am » |
Quote Modify
|
Learning is one of the best defenses against anxiety!
MANAGEMENT OF HEADACHE AND HEADACHE MEDICATIONS, 2nd ed. Lawrence D. Robbins, M.D.; pub. by Springer. $59 at Amazon.Com. It covers all types of headache and is primarily focused on medications. While the two chapters on CH total 42-pages, the actual relevant material is longer because of multiple references to material in chapters on migraine, reflecting the overlap in drugs used to treat. I'd suggest reading the chapters on migraine for three reasons: he makes references to CH & medications which are not in the index; there are "clinical pearls" about how to approach the treatment of headache; and, you gain better perspective on the nature of headache, in general, and the complexities of treatment (which need to be considered when we create expectations about what is possible). Finally, women will appreciate & benefit from his running information on hormones/menstrual cycles as they affect headache. Chapter on headache following head trauma, also. Obviously, I'm impressed with Robbins' work (even if the book needs the touch of a good editor!) (Somewhat longer review/content statement at 3/22/00, "Good book...."
HEADACHE HELP, Revised edition, 2000; Lawrence Robbins, M.D., Houghton Mifflin, $15. Written for a nonprofessional audience, it contains almost all the material in the preceding volume but it's much easier reading. Highly recommended.
|
|
IP Logged |
Bob Johnson
|
|
|
nani
CH.com Alumnus
New Board Hall of Famer
Got kudzu?
Gender:
Posts: 7953
|
|
Re: newbie mom
« Reply #3 on: Jun 10th, 2006, 10:09am » |
Quote Modify
|
Hi singalou, and welcome. Pick up some Red Bull today. Slamming a can at the first sign of an attack can abort it for some of us. The Imitrex pills won't help. They take too long. When he sees the dr, ask for the statdose (injection). The oxygen has to be at 10 - 15 lpm with a non rebreather mask.
Let us know how things go. You'll find lots of info and support here. Sending pain free wishes to your home, nani
|
|
IP Logged |
Others may come and go, but MY power is MINE.
|
|
|
tanner
CH.com Alumnus
New Board Hall of Famer
Adopt a POW/MIA I have
 
Gender:
Posts: 2449
|
|
Re: newbie mom
« Reply #4 on: Jun 10th, 2006, 11:07am » |
Quote Modify
|
HI Singalou, I just wanted to welcome you and back up what Nani said about the Red Bull. If I am lucky enough to catch one coming I can usually postpone it by slamming a can. If it works for your son then I would recommend always having a little cooler with a couple in it. I have been in public (like the Library) and getting to one fast has allowed me to make it home safely without having to wait out the attack. My Doc does not approve of me drinking more than 2 a day because it makes your liver work pretty hard getting rid of all the excess vitamin B, but then I happen to have HepC to go with my HAs so your Doc may think differently.
Anyway sorry to meet you here but glad you found us! Put your son on the board even if it is just to lurk so that he can see for himself that he is far from alone.
...................Good Luck Monday........Tim
|
|
IP Logged |
I AM THE MASTER OF MY MIND, MY BODY, AND MY EMOTIONS...
it's just my head that sucks...http://www.centerforlit.com/
|
|
|
singalou
New Board Newbie
Gender:
Posts: 2
|
|
Re: newbie mom
« Reply #5 on: Jun 10th, 2006, 1:38pm » |
Quote Modify
|
Thanks to all of you for the valuable information! I have emailed the link for your group to my son. We made it through the night and none so far today....keeping my fingers crossed. Have a great weekend all - sing
|
| « Last Edit: Jun 10th, 2006, 1:39pm by singalou » |
IP Logged |
|
|
|
Jasmyn
CH.com Alumnus
New Board Hall of Famer
Each day will be a new trick in life's journey
Gender:
Posts: 2762
|
|
Re: newbie mom
« Reply #6 on: Jun 11th, 2006, 4:39am » |
Quote Modify
|
Welcome!
It is always difficult to see our children go through pain and there is nothing that we can do to relieve it. Here you will find the ammunition to help him fight this war.
We will be here to support you and your son.
|
|
IP Logged |
Jazz
Madness is proclaimed by society’s inability to accept its own infallibility
|
|
|
|
|
|
Home
Help
Search
Members
Member Map
Login
Register
Reply
Notify of replies
Send Topic
Print
test rss