For the episodics, I'm wondering if you have shadows or some form of pain all the time while you're in cycle?  Or do you experience some pain free time inbetween hits?

For the chronics, do you you have cycles of high activity and low activity - and are they regular?

Thanks,

Laurie

I've gotten to the point where I consider anything 2 or below on the Kip scale to be pain free. In other words, I can deal with anything 2 or below without having to take action.

I am episodic and mine are pretty well 2 times a day and are usually clock work.  If I get hit at 6 in the morning then I can expect to be hit later that evening between 5 and 7 p.m.  Otherwise, I am pain free with occasional shadows.  I have had cycles of 4 and 5 big hits a day and during that time the back of my neck was constantly uncomfortable.

I agree with Brew about the lower kip scale CH.  They're very tolerable, but anything higher, it's pain time.  

The cycle i'm currently ending (so I think) had one in the morning usually 6-8am with a PF free (with and without shadows) period till the next one hit usually around 11pm-2am.  The shadow will stick around sometimes all day long, but this cycle was better than most.  Today has been CH free, knock on wood.   I hope the cycle is over, but i'm never sure.

Another thing that worked for me this cycle was to take 50mg of Imitrex before bedtime and I would have a full night of sleep.
Lack of sleep can make you evil >:(

I'm episodic, between actual attacks I'm pain free, with the exception of occasional shadows. When I defeat an attack with oxygen and oral cafergot, I go beyond pain free to this almost euphoric high.

Guiseppi

At the height of my cycle I have continuous shadows which are pretty much anything from just pressure to as much as a 2. Hits are usually at least twice a day at a kip 8 or 10.   As my cycle winds down I sometimes feel totally normal but that gets interrupted by hits that range from around a 5 to an 8.   When I have some "normal" time I know  I'm close to turning the corner even if it's still a month or so away.  

PF wishes,

Jeannie

Guiseppi wrote on Aug 13^th, 2008 at 2:25pm:

...I go beyond pain free to this almost euphoric high.

Like when the Padres win?

Don't let that O2 bottle get too far away. ;)

I'm chronic and have been so since my headaches began at the end of September 2007. The beast seems to be morphing a lot, so that sometimes I get days when I have six hits, while sometimes I get just one hit. The hits also vary in how painful they are.

Usually, though, I get around 2-3 hits per day and they are anything from KIP scale 5 to 9. Usually around 7. The pain-free time I have per day is often just a couple of hours, and none during some days. Usually between the hits I'm at least on KIP scale 1-2, occasionally on 3 or even four. Mostly I feel best a bit after an attack, when the "afterburn" stops.

- Best regards,
Rosa

From the start of my cycle to the peek i have alot of shadows between the hits wich are (kip 6 or 7) and a stiff neck

when it peeks i have constant shadows probably for about 3 days and (kip 9 - 10) hits after that it starts winding down and i can go 2 days with out a hit but when i do get them in the winding down time there still (kip 8s) the  last week or so i get about 1 hit usually a biggy and then its just shadows after that when the shadows are gone for 2 days i consider my self out of cycle.  but it has jumped back up and bit me in the ass befor today so i dont think about drinking or anything for a few weeks afterwards

I can have a slight shadow even when I'm out of cycle. Yesterday, I laid down and felt it coming on. It was one of those slow attacks, that come on slowly but full force. It lasted about an hour, and slowly faded out. This time, since the air is so dry, I boiled two big pots of water and got some moisture back in the air. But last night I actually slept all night pain free. Today, I laid down and it was almost instant shadow, so I got up. Then I did something I should've already done and moved my bed back into the bedroom. I had 'moved' into the living room, because it's dimmer in there ( I sleep during the day). But I guess the A/C was the actual trigger, and the air in the living room is kinda different than in the bedroom. That happened at the last place I lived, I had to stay out of the living room. I lived in the bedroom for the two years. I'm about to lay down for a nap before work, here's hoping I'm right. And it's already starting to cool down here in Texas, last night was so comfortable I slept good. But we are under an Orange Level air advisory. I think that may have had something to do with also. This cycle I'm in is actaully the first in about a year and a half. It's been awhile.

i would have to say that i shadow all the time during my cycle.  i might have an hour of pf time, but i can always feel some action on my suffering side. sometimes it peaks really quickly for about 10 seconds and subsides back to a dull numb sensation.  it will not let me go until my cycle is over. my ch's come 1 a day to 1 every 3 days.  but they are 9's and if not aborted last 4 hours and then leave me with a horrible after shock.

angela

It's been 9 days since my last attack, and I feel I can safely say that I am out of cycle.  I didn't realize that I was always feeling something while in cycle until now that I am finally truly pain-free.  

I journaled that I had some pain-free days during my cycle, but compared to now, those were not really pain-free days.  My husband says that my smile disappeared completely for the 4 weeks while I was in cycle.  I guess that was a sign that I wasn't quite "normal" between hits.

Episodic.
Shadow a lot with 1-2 hits a day.
After two weeks on verapamil this tapers down to the point where I'm almost completely PF except for a few shadows and the occasional break through attack in the 5-7 range.  

Breakthrough hits are mostly my own fault  ::)  
- lack of sleep
- MSG
- forget to take or late with my verapamil (3x/day)

A little quality time with my O2 or an energy drink usually sets things right again  8-)

-Dennis-

I am pretty much like Dennis:

episodic
1-2 hits a day
shadow alot during the day til verap kicked in then usually only shadowed 1x per day -around 4-5 pm
Had one breakthrough of about a 4 or 5 ( could talk thru it , probably could've waited it out, but had the kids in car on way to soccer game- so took an imitrex)  

I'm chronic.  Have high and low cycles that I have stopped trying to figure out.  Just when I begin to think I've imagined this condition and I really don't have ch (denial is a wonderful thing while it lasts), wham, the beast reminds me that he is still there.  Longest period without any ch activity is about 2 weeks.  During low cycle, I will dose with rc seeds every 30 days.  If I start getting upper level hits, I'll start dosing every 5 days for a few weeks.  02 is my best friend!!

Beth

Guiseppi wrote on Aug 13^th, 2008 at 2:25pm:

I'm episodic, between actual attacks I'm pain free, with the exception of occasional shadows. When I defeat an attack with oxygen and oral cafergot, I go beyond pain free to this almost euphoric high. Guiseppi

Guiseppi,

What is cafergot?

I get around 3 kip4's during the day. At night I wake up sometimes twice with a kip9.....but they start to lose their "powers" after 2 weeks.
When in cycle- I'm hardly ever pain free. Constant shawdows usually kip2's, but I'll take a hundred of those kip2's over the nightime attacks anyday!

Kimmie, cafergot is a caffeine-ergotamine drug prescribed for migraines and CH:  START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

Laurie

Laurie, I am chronic, with high and low cycles of varrying intensity and sometimes getting slammed what seems like constantly and other times only 4 times a day.  In between hits is pain free time.  Even when getting slammed, there is pain free time in between, even if only 5 minutes. When I was episodic in the past, also in between was pain free.  

I didn't want to jinx myself by responding earlier, but I jinxed myself anyway by paying attention and finally figured out why my left eye blackens when I get hit on the right.  The end of the trigiminal branches swell up and the area at the inside corner and above my right eyebrow, my right cheek, and below the right side of my mouth all swell and are a little white, and the left side is normal except for the black eye.  LOL.

Charlotte

From my personal experience.....
When I'm in the first month of my cycle, with the not so crazy hits (up to 8) I do enjoy painfree time in general.
If I however go into the second month, which I call lovingly high cycle, and I get the real nasty ones, I get a lot of shadow headaches in between real attacks. But I do not count them to be as pain, as they are merely very annoying.
Having said this, those are just generalisations, as I do get some shadows while in ''low'' cycle, and some real painfree time in high cycle. Who was it again that said, clusters are predictable?
But there is a pattern, yes.

Regards, Pascal.

Charlotte wrote on Aug 16^th, 2008 at 1:53pm:

Laurie, I am chronic, with high and low cycles of varrying intensity and sometimes getting slammed what seems like constantly and other times only 4 times a day.  In between hits is pain free time.  Even when getting slammed, there is pain free time in between, even if only 5 minutes. When I was episodic in the past, also in between was pain free.   I didn't want to jinx myself by responding earlier, but I jinxed myself anyway by paying attention and finally figured out why my left eye blackens when I get hit on the right.  The end of the trigiminal branches swell up and the area at the inside corner and above my right eyebrow, my right cheek, and below the right side of my mouth all swell and are a little white, and the left side is normal except for the black eye.  LOL. Charlotte

Oh Charlotte, I didn't mean to jinx you by posing the question!!  SO sorry about that!

Hoping things go back to normal - or, actually, better than normal!!!!!

Laurie

I am a variable episodic. I have had in the past many extended breaks where I suffer only silent attacks (all the symptoms, no pain)
Therefore not chronic in the pain sense.

When at my worst I have no pain free time between the hits during the days. Though the intensity subsides, I can hardly tell when one hit stops and another starts. I do however usually have a nice recovery break for an hour or two many evenings and then at night I may get up to 20 minutes between hits without pain..

This was before I got some control with CBs.

So is there anyone that experiences - or prior to busting - that has experienced NO pain free time for years at a time?

I am episodice twice a year or was. I have been cluster free for over a year but not migraine free with busting.

It always starts off mimicing a cold, sinus or flu. During the 8 week period I would always feel like shit and get 2-3 hits per day of varying kips. I get a lot of shadows and swelling and general malaise the whole time. Tearing of the eye and nasal congestion really bad.  DHE worked with Prednisone . It never aborted the cycle but made life tolerable along with the O2.

The last kip 10 I had was four years ago. Will never forget it. <<shudder>>> If I had over kip 5's often and chronic I would be on disability no question. I don't know how some of y'all do it.

i'm episodic. my attacks are either balls to the wall or nothing at all. it is black and white. i can be full blown kip9 to 0 in 2 or 3 minutes. its the damnedest thing.  

Garys_Girl wrote on Nov 13^th, 2008 at 11:10pm:

So is there anyone that experiences - or prior to busting - that has experienced NO pain free time for years at a time?

 Yes  [smiley=sad.gif]I am chronic and havn't had more than 10-15 min of pf time at once for about three years now.  Maybe once a month if I get a good nights sleep about 5 hours for me is a good night,  I will wake up feeling good for the 10-15 minutes but it always comes back to a low 2-3 kip.  My big hits have been different lately some days 6-8 kip7-9 and others just 1-2 kip5-7.
 Pf time to all,  Phil 8-)

I have not had a PF day since 1/16/01, but only CH since about 2003.  The non-PF time, I attribute to the chronic migraine, since I had that prior to the CH's, I have no idea if I would have ever had PF time between CH's.  So I don't have any PF time, but I don't know that it's not the chronic migraine - I really wish sometimes I knew if the CH went fully away or not between hits - but the migraine is always there.

Take care,
Carrie

I'm concerned about CH and Lizzie   -- do you mean you're not PF at "all"?  

I've been chronic forever, and have shadows (1-3 range) most of the time, but there are periods of PF time.

I take melatonin at night (have for years) and SLEEP at night. This I consider PF totally - I'm 'rested' for the hits during the day should they come (and usually do). For years, Mr. Demon has awakened me with a "shadow" (if I'm lucky only a 4-5) which I abort with O2, get my coffee and go on my merry way. I haven't had an alarm clock in years. BUT, I've had my sleep so this is just a routine morning ritual for us.

A 1-2 shadow I really don't even count as a headache. I drink a cup of coffee and get over it.  At a 3-4 I hit the O2 for a few minutes (or a Red Bull if I'm away from my O2).

And yes, Chronics have high cycles and low cycles. The high cycles are like "episodes" (I think that was the original question).

But CH and Lizzie, I worry about you guys hurting all the time. Sounds like we need to have a little talk about your treatment or something. Or maybe I've not been paying enough attention or something.

Hugs BD

Barb,

I definitely have both CH and chronic migraine.  This was the difficulty all along, and why the start of my CH is rather vague.  On 1/17/01, I got a headache which has never left - the "New Daily Persistent Headache" or "chronic migraine" that I often speak of.  It is always there.  It fluctuates from moderate to severe, but it is never EVER gone.  There is always pain on the right side of my head.

Then came the clusters in 2003.  I had a bad figure skating accident in the spring of 2003 where I had a concussion and neck sprain from a fall, and at first I was having headaches that more resembled CPH after that - shorter lasting, extremely severe and painful headaches on top of the headache I already had - that came and went sometimes up to 40 times a day but lasted maybe 2-20 minutes (at the longest for 20 min).

After a period of time, the "hits" spread out and settled into regularity.  I began having them at 5pm, 7pm, 9pm, 11pm, 2am, and 4am every day - lasting from 45-90 minutes - distinctly different from the chronic migraine.  Much more painful and intense when present, needed to pace, and so on.  Eventually got diagnosed in late December 2003 when I finally learned to separate the two headaches (thanks BillyJ) and tell my doc what was really going on.  Previously I don't think he felt I was having two separate headache types, which was confusing, as I was sleeping about an hour a night with the CH's.

Enter to my world high dose verapamil, and the CH's were busted out of their "pattern" and have never been in a pattern ever since.  Oddly enough, I now get most of my hits during the day.  2-6x/day for the longest time now.  I have tried a plethora of things over the years with varying success.  In the background, I've always had the chronic migraine.  While not more painful, it is at times more disabling than the CH because it is always there, and sometimes at quite a high level, tho granted not as high as the CH when they are there.  Never a PF moment.

Enter in my world last January the trial of the right supraorbital and bilateral occipital nerve stimulator and things REALLY changed!  I saw a reduction in CH, both in severity, frequency, and duration, as well as a drop in the overall base of the chronic migraine.  I had the permanent implant in May, and it did phenomenal things - especially over time.  By the time I lost the nerve stimulator in September to infection, I was having 2 weeks without CH at times.  It was a glorious thing.  The migraine was still always there, but even that had dropped in pain level.  If we count from 2001 when the chronic migraine started, it was the first thing in 7.5 years that truly helped me!  It was devastating to lose it a few months ago.  It's a separate post, but the good news is that I am now scheduled for a new implant on January 6th, so all is not lost.  In the meantime, I take a few different medications to treat both the chronic migraine and CH.  I remain on the verapamil - although I have had periods of going off it and on it throughout the years I've had CH.

I know there are others like me, tho we are a rare breed.  So I don't know if I constantly shadow, or if the CH went away fully, would I really be pain free?  I can't know because the chronic migraine is always there, underneath, covering up any pain free time I might have had from the CH.  It is an endless cycle - one gets bad and flares the other up.  I am so happy to finally have found something that may help, so I anxiously await the reimplantation of the nerve stimulator in January!

Hugs,
Carrie :)

Carrie, my heart really goes out to you!!!!!!!!!!!!!!!  And I can't wait until the reimplant for you!!!!!!!!!!!!!!!!  I'm so sorry - I didn't realize the stimulator had to be removed because of the infection.  :(

I asked the question because Gary is never pain free either, though he's been chronic only since March of 2006.  Back then he was pain free inbetween the hits and 02 and caffeine worked.  Well - there were 2 pain free weeks and some sporadic time for a few months when he was busting at the end of 2006, but that stopped working too.  And it was shortly before that period that he started to constantly "shadow."

Thanks to Phil I suspect we know why the 02 stopped working.  (THANK YOU PHIL!)  Gary's constant shadows mask the onset of the attacks, so don't know soon enough for the 02 to work that the attack is there.

When the busting stopped working, Gary went back to the med-go-round.  That was his 5th or 6th neuro.  When he gave up, he referred Gary to pain management (without ever having tried lithium, which I found out about here after it was "too late.").  Anyway, despite a lot of flack from quite a few people here, I stood by Gary during this time.  It did provide relief - for a while.

But he detoxed off the narcotics in September.  We've kept a really detailed headache diary since then, and he was at the Montefiore Headache Center in October.

After having tracked everything - and I mean everything (all meds, everything he ingests, all attacks, all pain, all fevers, etc. for almost three months now), we know that we eat (now, LOL) a pretty healthy diet with no MSG.  It looks like he wasn't experiencing many rebounds while on the narcotics, because the level of activity hasn't changed much now that he's off for 2 months.  We quit smoking back in Sep too.  Quitting smoking hasn't changed his attacks at all.  

But the October data shows that he spends an average of 410 minutes a day in an attack that is k5 or higher (28% of a day), he sleeps on average 162 minutes a night (in spurts mostly of 20 minutes), so he spends about 32% of the "awake" minutes of a day in CH attack.  His average level of pain in an attack is K7.8, though that is because we only measure attacks if they're K5 or above, because at this point he considers anything less than a 5 something not worth dealing with.  The "non-attack" minutes of a day average a pain level of K3.2.  And that's dropping all September data which could have been skewed by the narcotics and the detox.

As to the fevers...  

There appears to be no correlation between the fevers and the clusters.  He had fevers in excess of 103 17 times in October, but his baseline "normal" appears to be 97.4.  He's done a 10-day course of high-dose Levaquin and a 15-day course of high-dose augmentin.  The fevers continued during the treatment and after, and blood work (and examination of other bodily stuff) still hasn't turned up anything.  

Montefiore wants to address the fevers ASAP (obviously).  He's been seeing an Infectious Disease doc, and has become a human pin cushion with all of his fluids &etc. having been examined - being examined.  Still no explanation for the fevers.

Right at the moment, he's technically a medical mystery, and at this point his neuro at Montefiore is not ruling out the possibility that he actually has some brain disease that has not previously been diagnosed.  

Anyway, the high resolution MRI had to be rescheduled because he went into a cluster attack while waiting for the MRI last Thurs.  This time he's scheduled for the first appointment of the day next Wed.  The low-res MRIs have turned up nothing.  We'll see.

But thank you to everyone for answering.  Gary keeps presenting symptoms that are not associated with CH - I just didn't know it until I posted here and asked, so thank you again to everyone for the input.

To Phil and Carrie, I hope you find something that provides SOME pain free time!!!!!!!!!!!!!!!!!!!!!!!!!!!!!  We're still searching.....

Laurie

Laurie, How long do his fevers last? Are they in combination with a CH hit or separate?

I would venture to say that few have done a temp check when being hit. Many however mention sweating during an attack and accelerated temps during silent or phantom hits for those that get them.

It would be interesting if anyone else being hit could if possible check there temperatures during a hit.

MJ, thank you for asking.

I was hoping for input on the fevers when I asked the question back in August, but it turned into a "Your husband is a junkie" thread.   ::)  Well, he's detoxed now and on nothing other than the ibuprofen he takes at the onset of a fever attack and protonix.  So it isn't technically serotonin syndrome - though at this point, his new neuro isn't ruling out that his hypothalamus is totally dysfunctioning and causing something like that.

I'd still be interested to know about others - but it's damn hard to stick the thermometer in someone's ear when they can't stop moving in the thick of the throes of an attack.  But this is different, because he heats up and sweats with a cluster attack - but not like this.

And the data indicate they're not related (we knew it anyway).  He can get an attack during one of the fevers, and he can get an attack and then have a fever start, but he has most attacks without this fever event.  He usually ends up with an attack at some point during a fever event, but that's just because he has so many attacks every day, and the fever events take about 3 hours round trip (up to 5), and he averages 7 cluster attacks a day.

And while the time he has these things is all over the place, they are "clumping" in late afternoon or early, early AM.  He actually managed to have a cluster attack AND one of these fever events at the first visit to the new Neuro at Montefiore.  Doc spent three hours with him.  He would have sent him to the emergency room, but we already had MRIs and various bloodwork (including aerobic and anaerobic cultures that had "percolated" for six weeks) done.

It usually starts with him shivering and almost always, as he heats up, he starts really shaking uncontrollably.  He feels freezing to the touch at first though sweat is pouring off of him.  By now, his fever is usually 101- 102- something.  It ratchets up by a degree about every 20 minutes.  It usually peaks at around 103.8 or 103.9, though as you can see, it does spike up into the 104s pretty frequently.  By then he's heating up the whole house and feels burning hot to the touch.  When it passes that, it shoots to 107 - we've never measured it inbetween (except on the way down), and we take his temp every 5 - 10 minutes, so those last spikes are very quick when they happen.  

When he starts shaking, even though he shouldn't, I let him wrap a blanket around himself and make him take some ibuprofen.  But I get cool towels on his forehead, head (he shaved his head hoping it would help dispel the heat), and back of neck. I have to change them almost as soon as I put them on because he heats them up so quick. Docs have said not to use ice.  The 102 - spike up - cool back down to 102 usually takes 1 to 1 1/2 hours.  Within 3 hours (on average) he's usually back down to 96-something.  His baseline temp averages 97.4.

The first time this happened we didn't take his temp.  It was a year ago, and I posted about it here.  We suspected serotonin syndrome.  But it seemed to be an isolated event.  Then this last August, it started happening pretty regularly.  It'll go for 3 - 4 days, then nothing for a few days.  Then fever one day, then nothing for two days.  It's just all over the place.  In August, he was no longer under the care of a neuro, (his last one gave up and referred him to pain management).  His GP did what he could to figure out the cause, but to no avail.  I don't know why it didn't occur to us to see an Infectious Disease doc, but at that time, Gary was more focused on getting off the narcotics (which he did in Sep).  Saw a new neuro who said he didn't know how to treat Gary, but was willing to co-ordinate with experts and his GP, and referred him to Montefiore.

He's been on standard antibiotics in pretty high doses, but that didn't affect the fevers.

We're not happy with the ID doc he's been seeing.  He's got a new one on the 26th.  In the meantime, Montefiore neuro wants a high resolution MRI (MRI in Sep showed nothing, but was only 0.3 tesla - standard for an open MRI).  He went just this last Thurs for the high res MRI, but they kept him waiting for an hour and he was in a cluster attack by the time they called him.  It's been rescheduled for this Wed - the first appointment.  

In the meantime, in the past two weeks the fever events have changed, in that now sometimes, not every time, his extremities (fingers, toes and nose) turn white and are FREEZING cold.  So far, all they've done is give him (another) EKG and an EEG, but nothing abnormal shows up.  He's had numerous blood workups done, and his bodily functions examined, and nothing shows up.

Phil pointed out it sounds like it could be meningitis.  But if it's bacterial, the only symptom he presents is the fevers, and his blood work didn't show elevated levels of c-reactive protein, so my guess is that's why the GP or the first ID doc didn't do a spinal to check.  Plus I assume the swelling of the menenges (sp?) would show up on even a 0.3 tesla MRI. ??  He did have viral meningitis as a kid, and we've mentioned this on every form he's filled out.

Sorry for the long answer.

Laurie

From my own experience? Sometimes MRI's do not tell you what the frig is going on.

I've had MRI's, and CT scans immdiately before lumbar punctures / spinal taps. Both have came out showing my intracranial pressure was not up.

The doctors tap me, and find my pressure was 500 or more each time.

They would look at my eyes, and when they SHOULD have seen edema in the optical nerves, they did not. If they were to go by what the MRI,CT scans, and eye exams shown... I would have wound up blind! I don't EVER trust one test to tell me everything going on. If you guys think it may be a form of meningitis, ask for a tap.

I've got several other examples I can give you, but my main thing? If getting him a tap will help determine OR rule out what may be going on, I'd say do it. It's not pleasant, but it'll give you some answers. (Even if the answers are all just 'no, it's not this, or this, or this. Those matter, too.)

I'd dog them until they find out what the hell is going on. It could be endocrine, too. That can do all kinds of funky things to you, but one thing at a time, really.

Just FYI, we've noticed if I'm at the doctor, and it's near my cluster time, I will run a very low grade fever. 99.2-99.5 or so. Not a huge difference, but we also know during these times I was not battling any infections. I also sometimes start to shiver uncontrollably or feel cold before a shadow turns into a full hit. (I'm someone who becomes overheated easily...it's very odd for me to be cold!) My Mom has started to take it as a warning sign of one, and starts asking if I need help with anything.

There's only been ONE time when my body temperature was lower, 97.4 during a cluster, and that was after I had taken my epi pen. The cluster was partially supressed, and since my body was reacting to the epinephrine, that could be why... I just honestly assumed it was my hypothalmus being screwed up, since it's involved with all of this.

Mystina

Mystina, you are SO right!  We're there the 26th (which we were "lucky" to get because they're booking into January).  :)

Laurie  [smiley=wave.gif]

Well, the high resolution MRI showed nothing unusual.  But it was "just" a scrip for the brain, so he'll probably have to go back for a pituitary/hypothalamus study.  Of course his right-sinus showed "sinusitis."  The sound of the machine always triggers an attack.   ::)  He did his best not to move, though the tech was great and let him know when he could toss his legs around inbetween each segment.  ...At least this time he didn't throw up while all locked in.

Tomorrow is the infectious disease doc.

Laurie

Garys_Girl wrote on Nov 25^th, 2008 at 9:24pm:

Well, the high resolution MRI showed nothing unusual.  But it was "just" a scrip for the brain, so he'll probably have to go back for a pituitary/hypothalamus study.  Of course his right-sinus showed "sinusitis."  The sound of the machine always triggers an attack.   ::)  He did his best not to move, though the tech was great and let him know when he could toss his legs around inbetween each segment.  ...At least this time he didn't throw up while all locked in. Tomorrow is the infectious disease doc. Laurie

I have to get one once my neurologists office moves... I can't stand them, having so many of them when I was little made me terrified of them. So they generally just tranq my ass, even if I'm in an 'open' one. I can understand how he must have felt!

If you guys are getting the LP anytime soon, good luck! I hope the doctor tomorrow can help you!

Mystina

Today's infectious disease doctor was even more useless than the last one!  I really almost lost it on this one today.  After going through everything, she wanted to talk to the radiologist.  Fine.  She came bouncing back into the room and said "I think we've found the problem!  He's got a terrible case of sinusitis!"

Yeah, like we needed the MRI to tell us that.  Like a rhinoscopy and two courses of antibiotics since Sep have "cured" his cluster headaches.  So her solution?  Another two weeks of the same antibiotics.  I had to walk out, because I didn't know whether to cry or rip into her.

She wouldn't order a spinal to test for meningitis.  Wants him back in two weeks.

The way I figure it, the next step is to have Gary's neuro at Montefiore contact an infectious disease doctor at Montefiore.  The two need to consult before Gary even sees the ID doc there, because it's a trek for us to get into the Bronx.  He needs to be there for a day or so and subjected to every test on planet earth (again), including the spinal for meningitis.

We're not going to bother going back to this one again.  

My mood still says "strong," but I'm feeling very discouraged.  

Laurie

 Hi Laurie,  Sorry to hear about the Doctor,  I know all about the stress of a bad appiontment when you are hoping and praying that some thing gets done and it doesn't happen.  You guys are doing the right thing to just try and move on to the next doctor,  dont give up.
 Stay strong if there is any thing I can do you have my #,
       Phil 8-)

i am chronic and pretty much always have shadows or hit above 6. just a matter of severity for me.
all is relative, my so called pain free time would kill others i am sure.

Karl, and we thought Gary had it bad living base-line life at a 3-4 for the most part.  My heart really goes out to you.  

Phil, thanks.  Hope things are progressing better for you!  The really maddening thing about all of this is how far out all the ID docs seem to be booked.  That's why we're REALLY hoping is neuro will help get him an appointment that isn't in like February - especially given that he wants to focus on finding the cause of these fevers before he really gets to experimenting on drugs to treat the CH.  

Laurie