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        New Message Board Archives >> Oct-Dec 2003 >> newly diagnosed
        
(Message started by: Rockymtn on Oct 25^th, 2003, 4:49pm)

Title: newly diagnosed
Post by Rockymtn on Oct 25^th, 2003, 4:49pm

I'll try to make this short and simple. I was diagnosed this week with cluster headaches. After reading ALOT about it, I'm pretty sure that's what it is. Still self doubting though. I am experiencing a few odd symptoms that I've not seen listed by anyone else, or at any of the various web sites. I've had a headache, mild to moderate for about 3-4 months. Thought it was sinus trouble, but wouldn't go away. Constant draining into my throat. Went to doc & have benn taking meds, but no relief. Went to dentist, thought maybe tooth problem-nothing wrong. Went to eye doc, eyes ok. Have had alot of stress for past few months. Husband lost his job; I suffer from anxienty disorder; troubles at work; and just everyday stress. I haven't slept more than 5 hours at a time in past 3-4 months. I usually wake up after 1-2 hours of sleep and feel very anxious. Anyway, about 3 weeks ago I woke up in the morning with a very bad left sided headache that progressed throughout the morning while I was getting ready for work. I was driving to work when I got this horrible pain in my left eye that became more & more intense as the minutes passed on. I started shaking uncontrollably, like having a seizure, so I pulled off the road. I was taken to hospital by ambulance and had MRI, CAT scan, blood tests, Xrays done which all came back normal. As I was laying in the ER (alone), the shaking started up again & I was unable to open my eyes or communicate, although I do remember bits and pieces of what was going on around me. I was placed on double oxygen for 3 solid hours, and the "episodes" finally stopped. What's really weird is that I was not having a headache at the time. My left eye was watering and I had a more intense sinus draining at the time. The ER let me go home after 6 hours with a diagnosis of tension headach and unexplained muscle weakness. By the way, when the paramedics picked me up and when I arrived at the hospital, I was uable to move my arms. I've since had aprox. 12 more "episodes" in the past 3 weeks. I have an almost constant mild to moderate headache that gets worse shortly after waking up in the AM and then again from about 4-9PM every day. My Neurologiost says he doesn't know whats wrong. My primary care doc discovered that I have very low blood pressure when standing (orthostatic hypotension). I saw a cardiologist this week, and he was the one to diagnose cluster headache. He put me on calcium channel blocker and Imitrex. The headaches a becoming milder now. Has anyone out there ever experienced these types of symptome with cluster headaches?? The cardiologist said that my autonomic nervous system is dumping adrenaline into my system as a result of the pain, and that's what's causing the passing out and seizure like "episodes". I'm still not sure if believe I have cluster headaches. He referred me to another neorologist, but I won't see him for a couple weeks. Any suggestions/advise??

Title: Re: newly diagnosed
Post by cathy on Oct 25^th, 2003, 5:04pm

Hi and welcome to the board, could you explain what exactly happens when you get an episode...how long does each episode...have you done the cluster quiz..? Im not a doctor or a neurologist but I think a second opinion is a good idea...I hope it's not clusters but if it is you couldn't have come across a better board for support and understanding..good luck and keep us posted.

Cathy :)

Title: Re: newly diagnosed
Post by Rockymtn on Oct 25^th, 2003, 5:35pm

Cathy,

Thanks for the reply. I'll explain as best I can. I have a constant headache, pressure on left side of head, very tender scalp, temple, and watery painful eye. Aprox. 1-3 hours after waking up, I will feel an increasing pressure in the left side of my head, muscle twitching that causes me to blink hard and sometimes pulls on the left side of my mouth. I get very light headed and lose partial conciousness. My head will start jerking to the left side, and then the body tremors start. My arms go numb, although I cannot feel them, my muscles tighten up and my hands either close up like I'm making a fist or they start flapping around. My legs shake so bad, I cannnot stand up. My heart starts pounding and I feel like I'm choking for air. I have great difficulty swallowing, and my jaw tightens up so bad I feel like my teeth are going to break. This will last for about 15-30 minutes. When it's over, I'm exhausted. My left eye tears up and & it feels like a sinus has broken open and the draining starts. When I feel an "episode" coming on, if I can lay down quickly, the muscle problems usually don't get bad. Seizures have been ruled out (thank God), by the ER doc and Neurologist. I'm just really scared. I don't want to be left alone for fear that one of these times I'll black out totally. It seems as though the docs just aren't listening.

Title: Re: newly diagnosed
Post by cathy on Oct 25^th, 2003, 6:23pm

Like I said im not a doctor or a neurologist .....but the thing that stands out most in your post is that you say
'When I feel an "episode" coming on, if I can lay down quickly, the muscle problems usually don't get bad.' I think im right in saying that most CH sufferers cannot lay down during an attack I know Wes has never ever been able to......

I hope you get the help and reassurance you need from the appointment in a couple of weeks I think you are right to question the diagnosis....is there no way you can be seen earlier than this, have you told them you'll take a cancellation if one comes up..?? hoping your going to be okay.

Cathy

Title: Re: newly diagnosed
Post by oringkid on Oct 25^th, 2003, 6:55pm

In my humble, non-medical opinion, this does not sound like cluster headaches to me.

Definitely see if you can be seen earlier as Cathy suggests by asking to be seen if there are any cancelations.

Good luck and let us know how it goes

Sherry

Title: Re: newly diagnosed
Post by Patrick_A on Oct 25^th, 2003, 6:56pm

Hello Rockymtn, Welcome to CH.com. Your symptoms don't sound familiar to me. Of course, i am not a Doctor. I would go for a 2nd opinion if i were you.

Patrick

Title: Re: newly diagnosed
Post by lisamchlmartin on Oct 26^th, 2003, 10:54am

Hi, my name is Lisa and I read your concern. It sounds like a cluster headache for the most part (I have just about the same symptoms myself). I feel like I'm going to pass out and get really lightheaded when the pain increases. I think that I have a combination of both cluster/migraine headaches. I hardly ever get a headache but when I get the clusters, I feel like I'm just going to die!!! Mine are so bad that I can't do anything at all when they're at their peak. I'm really sorry to hear you're having this problem. My doctor prescribed Zomig previously and it made the episode end sometime during the night. I hadn't had any sleep and couldn't eat anything except soup for about a month. I went to the hospital, they give me Percocet but that made be nauseated and made the headache worse. I hope you feel better soon!! :)

Title: Re: newly diagnosed
Post by jonny on Oct 26^th, 2003, 11:47am

Whatever it is I hope you find something that helps.

................................jonny

Title: Re: newly diagnosed
Post by nancyc on Oct 26^th, 2003, 11:55am

Definetly a second opinion is needed...clusterheadaches? ...the symptoms sound different from mine anyway....I wish you all the luck in the world...and alot of prayers. :Dnancyc