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        New Message Board Archives >> 2006-2007 Getting to Know Ya Posts >> New here.
        
(Message started by: TeresaB on Jan 19^th, 2006, 2:07pm)

Title: New here.
Post by TeresaB on Jan 19^th, 2006, 2:07pm

But, unfortunately not new to headaches.

I have had what has been deemed "cluster headaches" for over 13 years. Started with the pregnancy of my sixth child. Within a couple of years, I developed postural tachycardia syndrome due to autonomic failure/neuropathy. For me, the cluster headaches are part of this overall failure. Medically, we've treated the failure, and usually, this helps the headaches. The biggest part of this failure for me is the inability to maintain a blood pressure...I have severe orthostatic hypotension and my heart rate and rhythms are pretty funky, too.

I have been in a cluster cycle since September. It had eased up somewhat, but in the past couple of weeks has come back full force. Previous to this current cycle, the last was two years ago. We presume that cycle was due to my being in a state of congestive heart failure. After initiating strong diuretic therapy, the dreadful headaches went on vacation. This current bout seems to be somewhat related...I'm not particularly congested, but my main trigger seems to be anything that makes me more hypoxic.....I'm currently threatening to make my family prepare meals over a fire outside as even using the oven sets me off. Also a lot of problems upon waking when my lungs are a little wet.

Calling my doctor this afternoon to set up an appointment for next week as I just can't take it any longer. Last night's headache was scary even for me....haven't had one that severe in a very long time, and you know, it occurs to me from time to time that the pain is so bad that a stroke or heart attack could be produced by it.

I would love to hear from other sufferers who are also dealing with cluster and other illnesses/symptoms/syndromes that are related. As I said, for me, its all part of one big package, or so it seems.

Title: Re: New here.
Post by Cathi04 on Jan 19^th, 2006, 2:17pm

Teresa,
I want to begin by welcoming you. Of course, I'm sorry you need this site, but we are all glad you found us!
That said, honey, you have a LOT going on!
True also, there are many CH'ers who have multiple afflictions, and I am certain they will pop in any time now.
As for the CH, well, take a look at the left. These are links to some things which might help.
Probably the most important one, right now, might be the 02-have you ever used it for a hit? So many swear by it, and all you have to do is ask for help, should you need it.
Please take some time to read read read, and ask any other questions you have.
CH is tough enough ,on its own, to deal with.As far as CH,know now, Teresa, you are not alone. The people here are quite knowledgable and caring, so ask away.there's no limit, and no such thing as a dumb question.
Looking forward to your posts-and to better days for you, Teresa. Let us know how we can help!

Cathi

Title: Re: New here.
Post by TeresaB on Jan 19^th, 2006, 2:27pm

Thanks for the welcome....

With the whole spectrum of problems going on, I have to say that these headaches are the worst part of all of it. This isn't something I have to explain to posters here, I'm sure...but, you know, to a lot of people its just like "oh, you have headaches".....

Title: Re: New here.
Post by Cathi04 on Jan 19^th, 2006, 2:33pm

AHHH...the BIGGEST complaint around here..........NOONE can understand a CH unless they've lived through one!
I know trex is out for you, Teresa, but what has your Dr given you as an abortive/preventative? Have you considered alternatives?? Sooo many possibilities, but CH is so fickle, one thing works for one sufferer-but not for another.

Again, welcome to Clusterville, Teresa. Where it is SOOOOOO NOT "just a headache"...........post, vent, ask away!

Cathi.again

Title: Re: New here.
Post by TeresaB on Jan 19^th, 2006, 2:44pm

So far, what has been good at keeping my blood pressure, heart rate and fluid levels in check has been good for my headaches. I take a beta blocker, a diuretic and use another blood pressure drug, Catapres. At one point, Wellbutrin helped with the headaches.

Triptans are out...high cholesterol, smoker, past 40, coronary artery spasms. I'm hoping that my primary doctor will allow me to try oxygen therapy. I'd just as soon try to avoid adding other drugs. My husband is a paramedic and would be of great help in aiding me with using it.

Title: Re: New here.
Post by marlinsfan on Jan 19^th, 2006, 6:14pm

Welcome, Teresa.

on 01/19/06 at 14:27:15, TeresaB wrote:

With the whole spectrum of problems going on, I have to say that these headaches are the worst part of all of it.

Agreed! Here's a non-all inclusive list of my past & present injuries:

CH, of course
Herniated disk C6/C7 - having epidural steroid injections
Herniated disk L5/S1 - surgery in April 2005
Torn ACL & MCL ligaments in right knee - 1997
Fractured Pelvis, ankle, nose, 2 ribs - 1988

That's all I remember now.
PF wishes.

Title: Re: New here.
Post by TeresaB on Jan 19^th, 2006, 7:20pm

Marlinsfan,

Do you think your clusters might be related to the problems with your cervical spine? I know people with autonomic dysfunction who swear that they are all part of the same problem.

Title: Re: New here.
Post by thebbz on Jan 19^th, 2006, 8:21pm

Teresa,
Welcome, and I sure hate it for ya. I dont believe that CH will kill ya. The drugs they treat it with may. I have a cervical fusion c3 and 4 other orthopedic problems. I sometimes look at this for some cause or trigger. I think its the pain and grasping for straws. The CH is CH. It comes it goes. It dodges medications. Strikes out of the blue. Strikes like clockwork. Just when you think you have a grasp it changes. I have had times with no meds a k9 and it seems, for me at least, as I have become older about 30 to 45 min. the body does me a favor and I pass out. No treatment it seems is not an option. Hope you do well at the docs. I would demand O2.
Check out the information on the left as mentioned.
jb

Title: Re: New here.
Post by mcf69 on Jan 19^th, 2006, 10:59pm

Hi Teresa,
Welcome to the board. Interesting set of problems you have there, is the CH secondary to the CNS failure? Interesting how it is still episodic despite the CNS problems. I have a link you may find interesting:

http://www.aafp.org/afp/20050215/717.html

It is a little heavy on the medical lingo, but I think with your past experience you won't have too much trouble figuring it out. You bring up a very valid question with the hypoxia idea, I've said it here before, if oxygen alleviates an attack, hypoxia may be a trigger, in fact I've been diagnosed with sleep apnea, unfortunately correcting it didn't seem to help the headaches much. On that note I'll also add to what Cath and bbz said, check into the O2 therapy, it has helped alot of us a great deal. At any rate I'll quit rambling........ If you have any questions or need anything, don't be afraid to let us know.

Title: Re: New here.
Post by marlinsfan on Jan 20^th, 2006, 10:41am

on 01/19/06 at 19:20:39, TeresaB wrote:

Marlinsfan,

Do you think your clusters might be related to the problems with your cervical spine? I know people with autonomic dysfunction who swear that they are all part of the same problem.

I doubt it, my CH started in the early 80s (82 maybe?), my back problems started in 2003.