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(Message started by: GRZHOPR on Jun 21^st, 2007, 10:05pm)

Title: Diagnosed Today
Post by GRZHOPR on Jun 21^st, 2007, 10:05pm

Ugh! This started happening in March. It started with a 30 second headache above my right temple then a panic attack. I thought I was having a heart attack. I had probably 10 or 15 said panic attacks before the "big one".

On March 16th I was driving up the highway to go to the Saturday walk-in clinic to seek medical assistance with what I thought was just panic attacks resulting from the stress of putting my house on the market and my husband being laid off from work. I didn't make it.

I went into a full-on seizure as I was doing 70 mph. I had barely enough time, but enough wits about me to pull over as soon as I started losing motor control of my arms and legs. As I put the car in park, I hit my emergency flashers and rolled into the passenger seat. The cell phone was in my center console, but by now my fingers were locked and it was all I could do to press the up arrow to the last number dialed to call my husband to come get me. At this point I have lost motor control of my legs and my abdominal muscles on my left side.

My husband picked me up in under 2 minutes from the phone call, but I swear it felt like hours. He rushes me to the med center that I was already 1 mile away from... they call an ambulance from their parking lot while I'm twitching away trying to not suffocate while talking to the firemen (first on scene).

4 hours later the emergency room releases me after putting me on Valium to calm the seizure. The headache however, kept coming back with more verocity than the last... and so did the panic attacks.

I go see my general practioner, he says I have panic disorder and the panic attacks are causing the headaches... so he sends me to counselor to dissolve my stress. (Where's the rolleyes emoticon..?)

So I go to 4 counseling sessions, whad'ya know, it didn't solve a damn thing. Apparently I'm an adrenaline junkie with a good grasp on reality. The counselor tells me it's just in my head and I need to start driving again. So I tried to drive myself to work... I was 2 miles away from my office in a gas station parking lot for 2 hours having another attack. I'd like to give him an earful, but not at his rates!

A couple of months go by, the behavior changes. I am now getting headaches in 4 day stretches, and the headache moves around in my head! The panic attacks are now starting the day after the headaches and go away the day before the headache leaves--still with abdominal motor control problems, nausea, and diarrhea. I've given up counting the "hot flash-hyperventilate-cold flash" scenarios.

I'm now ready for a second opinion.. and that brings me to today. I went to visit and ears, nose, and throat doctor. He's seen so many migraine sufferers that he has an ink stamp that he pulls out in front of me and stamps on his prescription pad all the foods I'm no longer allowed to have... wtf? No cheese or bread?!?! He then writes me a prescription for Inderal. I've been reading up on it a little bit tonight, and quite frankly I'm scared--especially after the pharmacist told me it's chronic and I will probably have to take this for the rest of my life. ...and I thought I wanted to die before just from the headaches. I am also getting scheduled for an EEG tomorrow and a follow-up in about 3 or 4 weeks to check my dosage on the Inderal.

As I write this, the right side of my face is numb, the inside of my ear hurts so bad that my teeth feel like they're going to fall out, and the right side of my neck is throbbing.

Before March, I've never had nightmares; I now have them 3 or 4 nights a week... I have never emptied a bottle of pain killers before, much less a whole bottle in 3 weeks. I'm not depressed by any means, but I have stopped caring if I live. The only reason I cry is because the torture will not end. The most of a breather I've gotten was for two whole days when I started my period, and oh my God I wished I was a man when that period came.

I really need some advice and I can't function well enough to fully search this forum right now for the answers I need to make it stop.

Do I take the Inderal tonight and face the new side effects tomorrow, or do I wait until after work on Friday to start a new medication giving myself the weekend to adjust? It says I can't mix Ibuprofen with it. So here I sit, stuck, and not able to make a rational decision because the headache won't quit.

I am 26 years old.

Title: Re: Diagnosed Today
Post by MR_FLOOR on Jun 21^st, 2007, 10:29pm

Grzhopr,

I so sorry about your ordeal,it's sounds horrible.But to me it don't sound like CH.In your story I never heard them diagnosed .Are you sure there CH.Go see a neurologists or a headache specialist.They will try preventives and will probably get you some o2.Also I'm sure about anybody else but pain pills narcotic or not don't work on my CHs in fact I've found them to be triggers. Good luck and keep us posted.

Dave

Title: Re: Diagnosed Today
Post by GRZHOPR on Jun 21^st, 2007, 10:29pm

And just like that the headache is gone... it will be back though, they always come back. Could be in 10 minutes or in a couple of days. :-[

Do migraines themselves limit to one side of the head like this and last for 10-20 minutes at a time? The several days thing above is how long I get the recurrences of these headaches. If it's not cluster headaches, anyone have an idea what kind of migraine this is? The ear, nose, throat guy said it was migraines and migraines can cause all of my symptoms, the panic attacks are the source of the motor control issues. Sorry if I confused anyone. I just want to get this problem licked. I want to be able to drive a car again.

Title: Re: Diagnosed Today
Post by Redd on Jun 22^nd, 2007, 7:08am

None of us wants to hear of you being in pain, however, it is very dangerous to assume it's CH without the proper brain scans to be sure it's not something more life threatening.

I am slightly confused..first you say

Quote:

I am now getting headaches in 4 day stretches, and the headache moves around in my head!

Then you ask

Quote:

Do migraines themselves limit to one side of the head like this

It might help us understand a bit better to know exactly how many individual headache attacks you get over the course of a day.

There are a number conditions that can be confused with Clusters. However many of the meds taken for CH could be very dangerous if not downright deadly when given for a different condition.

I'm very sorry you are hurting this way. Lets help you get sorted ok?

Title: Re: Diagnosed Today
Post by GRZHOPR on Jun 22^nd, 2007, 8:33am

On a bad day I have between 10 and 20 of these headaches. When I say move around in my head, I mean sometimes the pain is above my right temple, behind my right eye, surrounding my entire right eye, in my inner ear, in the roof of my mouth, in the back of my throat, down my neck, in my sinus/cheek. Once in a while, like 4 times so far since March, it has moved to the left side. It is dominantly on the right.

The headache starts in my temple or behind my right eye, then progresses to the other areas in addition to behind my eye. Last night when my face was numb, I was beyond even feeling the pain behind my eye.

Sometimes I just get one headache and it quits, other times, I'll get a headache, then it'll subside, then another one will come within 10 minutes or an hour or two... and this cycle will last several days. When I get into one of these ruts, my body responds with panic attacks. So when I say the headache doesn't quit for several days, it's a cyclical headache that starts in my temple, gives me a breather, then the pain from my temple/eye comes back, but also my right sinus will, then I'll get a breather or it'll move right on down my neck, and just keep coming and going until I'm beyond exhausted.

I insisted on an MRI when I went to the first doctor, it came back clean. My "second opinion" yesterday said it's migraines causing panic attacks and is scheduling me for an EEG and starting me on beta-blockers to hopefully act as a preventative. Now, the second opinion doctor did not explicitly say cluster-headaches, but I'm having a hard time matching up my symptoms with anything else.

And I hear what you're saying about making sure this is figured out correctly, because I'm seeing people on here using caffeine as a deterrent, but my doctor said to cut caffeine out of my diet. I haven't used caffeine or alcohol since I got out of the hospital in March anyway because of the Xanax. (And I do miss my whiskey & coke!)

Title: Re: Diagnosed Today
Post by Redd on Jun 22^nd, 2007, 9:09am

It sounds more to me like Paroxysmal Hemicrania. We aren't doctors, but trust me we've all run the gamut of trying to figure these things out.

Anyway, I suggest taking the Inderal with food, as that stuff can really upset the tummy otherwise. It takes a few days/a week to get to working, but for PH it's something like 99.9% effective. I'm not happy about your pain, but I am happy that it doesn't appear at this point to be CH.

Title: Re: Diagnosed Today
Post by GRZHOPR on Jun 22^nd, 2007, 9:38am

Thank you *SO* much! I didn't find anything on this previously during my research. Wikipedia had some (minimal) information on the topic.
http://en.wikipedia.org/wiki/Chronic_paroxysmal_hemicrania

http://en.wikipedia.org/wiki/Hemicrania_continua

I do believe you have at least pointed me in the right direction.

Best Wishes and Good Luck everyone,
Kate

Title: Re: Diagnosed Today
Post by Redd on Jun 22^nd, 2007, 9:47am

Glad to have helped. Best of luck in getting pain free Kate.

Title: Re: Diagnosed Today
Post by michael on Jun 22^nd, 2007, 1:37pm

Stay with us Kate and let us know how you get on.

Best wishes

Mike

Title: Re: Diagnosed Today
Post by gMike on Jun 22^nd, 2007, 9:41pm

Grasshopper,

http://www.mayoclinic.com/health/trigeminal-neuralgia/DS00446

You might want to spend a little time on this site and see what you think matches up. I have Hemicrania Continua which is controlled by Indomethacin. You may have a variant, Paroxysmal Hemicrania Continua which hits you many times a day with dramatic effects.

Like Cluster headaches, PHC is not really well understood by many doctors. Read as much as you can on the various kinds of catastrophic headaches so you can explain what you are suffering.

Make enough of a stink that they refer you to a Neurologist ASAP! This is the best way to start to get better or at least understand what is happening.

Best of luck to you.

Title: Re: Diagnosed Today
Post by GRZHOPR on Jun 23^rd, 2007, 10:54am

Well, this is day 2. I started the Inderal last night. Been kinda floaty; still pretty together though. You were right about taking it with food. I took it with dinner last night and had the worst gut rot this morning until I ate. I quit smoking yesterday... the doctor didn't tell me I had to, but the drug information for the Inderal implied that I should. This is going to be tough. It took me a year and a half to get on a good hypoglycemic diet (7 years hypoglycemic) and now I can't have any of the foods that I switched to after I had to cut back my sugar. My first thoughts yesterday were, "I can eat.. lettuce, and potatoes. (sigh)" I've been smoking for 5 1/2 years.

I think I might have put 2 and 2 together to make 4 on why this is happening now though.. I'm 26 years old and my body chemistry must be changing as I'm coming into the "sexual prime" years. It definitely explains why my symptoms were worse before my period.

My poor husband though, I'm trying to explain to him why I'm having issues, he wants to make it better but his eyes just gloss over because he doesn't understand.

I can't wait until I can drive a car again. He's had to drive me to and from work every day since March. I'd like to be able to stand in line at the grocery store and not have a seizure. I miss my independence for sure.

Welp, gotta go, the buzzer just went off to add more dry rub to the pork that's in the oven. I'm making BBQ pulled pork from scratch today.... I'm going to miss frozen burritos and pizza. Beef jerky is going to be another bummer, I like "prepared meats". :-/

Title: Re: Diagnosed Today
Post by black on Jun 28^th, 2007, 3:38pm

there is a slight chance u have cluster-tic headache.its a mixture of ch & pain of triplet nerve.as far as i know pain of triplet nerve is described as a electric evacuation in the head which lasts from 15sec to 120sec.along with ch is a strange mixture.all these u say u feel are part of triplet nerve.behind the ear,jaw etc.butit is truly said that u have to take a brain scan to be sure.take care my friend and just a little advice that might work.at least it did for me for some time.during crisis put ice or these creams from drugstore that produce heat at skin(sorry not familiar with the term.be patient and best wishes :)

Title: Re: Diagnosed Today
Post by Margi on Jun 28^th, 2007, 4:23pm

I have to reiterate here - we are NOT doctors. To me, this doesn't sound like paroxysmal hemicrania because of the motor control issues. Cluster-tic syndrome? Triplet nerve? Seriously - we are NOT doctors here - please push your medical folks to get you in for an MRI or CT scan quickly.
I'm a migrainer and what you describe isn't migraine either. I wouldn't worry so much about diet as I would getting a good diagnosis - in my opinion, you don't have one yet. I doubt the inderol is going to make a difference for you.
Seriously? Triplet nerve? Cluster-tic? Come on. It is not safe to diagnose people over the internet unless you are a doctor!! >:(

Title: Re: Diagnosed Today
Post by Patrick_A on Jul 6^th, 2007, 9:49pm

I agree with Margi. The best help you can get is find a good neurologist and go from there.

Patrick_A

Title: Re: Diagnosed Today
Post by black on Jul 7^th, 2007, 3:53pm

of course margi.i ve written it wrong.i read about it i from a greek doc about ch.i dont imply anything.i am trying to give the right words of what i read in case wants to look up for it in web.sorry if i offended anybody.truly my intension is not this.just an opinion.sorry if it sounded the wrong way.

Title: Re: Diagnosed Today
Post by LeLimey on Jul 7^th, 2007, 5:04pm

black don't feel you have to leave please. There is no better place than here for a CH sufferer. Opinions are always worth having, you may be wrong sometimes but you could be right too and others will always give theres to even things out.

Helen