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        New Message Board Archives >> 2006-2007 Getting to Know Ya Posts >> newly self diagnosed
        
(Message started by: Rusty65 on Jan 20^th, 2006, 4:03pm)

Title: newly self diagnosed
Post by Rusty65 on Jan 20^th, 2006, 4:03pm

Started having these headaches exactly like described here with one exception, the burning and/or nostril problems. But the area behind my eye hurts like @#**(!! and it is a living hell! My doc said I had migraines but I didn't have the sensivity to light, nausea, noise and I could not lie down in a dark room! That damn sure didn't work! The keep coming for 2 days at a time and then a day or 2 break and then its on for a day or 2. Unbelievable pain. My doc gave me Actiq which didn't take the pain away!!! Can you belive that! My CAT scan came back ok. Now my head feels that funny feeling that I get and the fear sets in. Its truly a aweful way to live. I have a appt with a nueroligist(?) the end of this month. I am also a recovering addict so this has really put a new spin on things. I am also taking the pill form of Imitirex, and several other samples he gave me but these are running out. I don't have insurance cause I'm self employed and due to other previous health issues(which are gone) my insurance rate is over $700 pr month!
I am glad that I 've found this site, any help would be greatly appreciated especially from people that take meds and are recovering addicts/alcoholics. Ive tried to get thru a episode without the actiq put I just cannot stand it. Please help!!

Title: Re: newly self diagnosed
Post by Guiseppi on Jan 20^th, 2006, 4:35pm

Find a neighbor with an oxy/acetylin welding rig. As soon as the headache starts, try breathing pure oxygen for about three to six minutes. If it aborts your headache, you can be sure you are a CH person! Now the only way this will work well is if you breathe pure oxygen. If you find somone with prescription oxygen you're liable to find they use a "rebreather mask" and they don't seem to work.

The bad/good news with most of the prescription pain killers, they don't help. They take too long to get into your system. You need to find an abortive, one that will stop the headaches when they start. Many use the oxygen combined with cafergot, many use the injectable imitrex, (somewhat expensive). Then you need a preventative. I use lithium, others use verapamil. Read the results of the survey for information to ask the neuro about. What works for one person often doesn't work for others. But a LOT of people have good luck with the oxygen. Read up on the meds link and go to your neuro well informed. The sad thing is most neuros don't know a lot about CH because they rarely see it. It's on your shoulders to do the educating! Good luck!

Guiseppi

Title: Re: newly self diagnosed
Post by Sean_C on Jan 20^th, 2006, 6:08pm

Being in recovery is something as you know is something you forever need to do for yourself. Being a cluster patient you do not need to do narcotics and drinking usually just makes them worse but I won't preach ;) I'm glad you made your peace with them and your moving on ;;D

I think oxygen would be worth a try, its safe and easy to obtain. If Randy (Mr. Happy) reads this thread maybe he could leave you a link to the clustermasx, I think its www.clustermasx.com

I'll take it your single because my insurance is 1800 per month, if not I need the name of your carrier ;;D

Welcome to the house of pain, lots of great folks here and lots of great info. Ask away if you need any help looking around.

Cheers

Sean.............................................

Title: Re: newly self diagnosed
Post by Rusty65 on Jan 21^st, 2006, 8:52am

I am single and I had hep c but my body defeated it!! Thats why my insurance is over $700. But once I get diagnosed with these damned headaches then thats one more thing that will drive the ole insurance bill up. I guess thats why yours is so high. These meds (imitrex,ect) are so expensive. I went to Blue Cross for your info.
I was prescrived Topomax. I went to Eckerds where it was $145 for my scrip. I have a friend who owns a pharmacy. Usually go to him but I was in severe pain and his store his on the other side of town. Well, ended up at his store and his cost (or what he let me have the script for) was $50.00!!! I wonder if thats what they(the big pharm stores) are getting Topamaz for and then adding $100 on top of it. There is a lot of hope there since I have no insurance and Imititrex/Frova seem to help me. God he's a God send!!
You people don';t know how much you've helped me! I've had a shadow for 2 months now and plenty of unanswered questions. Just to know that there are others and people that know exactly what I'm talking about, has helped me to the point of tears! I cannot thank you enough!!!!

Title: Re: newly self diagnosed
Post by marlinsfan on Jan 21^st, 2006, 2:30pm

Careful with dopeymax, I had a hard time with it, as have many others here.

Listen to Sean, Oxygen is the best abortive for many ofus. THe address for the mask is http://www.clustermasx.com

The price you see there is shipped to your house.

Mr. Happy (Randy) can hook you up with a high-flow regulator. Send him a PM, he'll responds. Then you'll have to find a tank, he probably may be able to help too.

Melatonin helps me keep the nighttime hits away> You can get that at the supermarket or walgreens. I take 9 mg 30 mins before bedtime. Ít's pretty cheap, abotu $5 for a bottle that lasts 30 days.

PF wishes.

Title: Re: newly self diagnosed
Post by Rusty65 on Jan 21^st, 2006, 2:43pm

What kind of probs with the Topomax? I am also on something similar to it called Tryleptal for another disorder. Over the years I've noticed that my memory and other mental skills have diminshed. (more so than usual lol)

Title: Re: newly self diagnosed
Post by thebbz on Jan 21^st, 2006, 2:44pm

Strong cup ocoffee and O2. It wont kill you, keep that in mind and the fear/panic may ease, it will aggrivate the demon,work on your breathing.
Check out Rappaports, Conquering Headache. Read and study CH, it will help when you get to the neuro.
Do not fall in the same hole you just crawled out of.
All the best
jb

Title: Re: newly self diagnosed
Post by marlinsfan on Jan 22^nd, 2006, 12:00am

on 01/21/06 at 14:43:56, Rusty65 wrote:

Loss of memory, made me kind of stupid. I actually got lost driving near my home.... can't find the right words when I talk, and the like. Made my headaches worse, too. I stopped after 6 days....

Title: Re: newly self diagnosed
Post by Rusty65 on Jan 22^nd, 2006, 9:10am

Trypletpal did the same thing and its gotten worse with the addition of topamax. Been thinking I was getting alzehiemers or something! lol (but yet not funny either) Thanks, I wish docs would listen to this stuff. They say that these drugs will not do this yet here I am hearing people having the same effects that I am having. What is up with them. We are not in some sort of conspiracy. Thank you again! Going to wean myself off of both of these damn drugs so I can think again!