I have chronic Ch's which started about a year and a half ago. At first they were 3 times a week, then a week off before they rolled around again.  The past several months they have been every night.  Altho the pain is freaking insane, what is driving me more mad is that during my waking hours I feel like I'm a walking zombie.  I have trouble functioning and focusing.  Almost a vertigo effect. I feel like I have bumblebees in my head.  Almost a drunk effect and I absolutely hate it and am very frightened by it.  I just want to FEEL NORMAL.  I thought for a while that maybe I was having anxiety attacks because I knew what the nighttime was going to bring.  But I can't be staying in a flux of anxiety all the time...or can I?  Does anyone else experience this sense of hopelessness and the 'not with it' feeling?  I've always been such an upbeat person and ever since clusters have entered my life, it's a living hell.  I want my life back.  Am waiting for a call from my neurologist regarding the oxygen.  Will try the melatonin as well as I do not want to get into the perscription drugs and the side-effects they bring.  BTW..has anyone tried accupuncture with any success? 

It sounds like many of the prescription drugs might have less side effects than you are having now.

For CH's, oxygen used correctly should always be tried as a first line abortive.

Good luck!

so what you're saying is that I'm having side effects from the headaches themselves since I'm not taking any drugs to keep them at bay?  I guess what I'm asking is does anyone else feel this way after a cluster on a daily basis?  I'm trying to see if this abnormal feeling is normal for cluster sufferers?  Am I making any sense?  Sometimes I question even that...it's like I'm going crazy.

My comments were based on the assumption that you have a good solid diagnosis of CH, by ruling out other problems.

In my experience, having multiple high level hits per day made me utterly useless - but I can't say that I felt sort of drunk or any vertigo like symptoms.

This is a discussion you need to have with a competent Neurologist. Any dramatic change in symptoms should be looked at immediately.

Marc

What Marc said.

   Potter

Thanks Marc for replying.  I had an MRI 9 months ago which had abnormal results based on a small amount of foci which indicated migraines.  I went to the neurologist with these findings and he was amazed with the description of pain that I was experiencing because he has known only 1 other female with Clusters.  I have no doubt I have clusters...textbook case.  Unfortunately I think I have chronic vs. episodic.  Now I'm scaring the hell out of myself wondering if there's MORE going on.  Maybe I need a follow up MRI to see if anything has changed.  The weird thing is, I didn't start having clusters until I had visited a chiropractor 17 times for a knot in my neck.  I've  even wondered if they were possibly brought on by him snapping my head like a twig. This really sucks.

I certainly don't mean to scare you. It's just that you wouldn't want to let something treatable get past you long enough to become really bad.

Has your CH history ever given you symptoms like this before? Perhaps a simple conversation with the Neuro who has your image file would be a simple, easy place to start.

Marc

No, it's been like a progressive effect. I wasn't this weird when the headaches first started.  I know my right eye twitched for eleven days straight, altho my clusters are always left sided.  Since the headaches have started every night instead of just a few nights a week, I've become almost disoriented.  I'm a poker dealer and it takes every thing I have to hang on and focus on what I'm doing.  It's a constant struggle.  My Neurologist had a heart attack so he was out of the picture for a while.  I've been to several in the area as my mom had Lou Gehrig's and trust me, they're not worth the powder to blow them up with.  So finding a good neuro is a feat in itself.  I really really appreciate all the responses as no one can relate to this stuff unless you've walked in those shoes.  I did read on this website where taking magnesium helps with the twitching.  We'll see how that works.

Sleep deprivation and the constant fighting off of the pain can be draining and always wipes me out.

Talk to your neuro about the O2 as an abortive and also discuss an appropriate preventative.

If I made a list of 1000 potential management treatments accupuncture would not be on it.

Thanks seaworthy.  I'll do that. 

Grace-
I call what you are describing 'cluster brain.'  My sister and I speak often to one another about it.  We have been episodic for many years.  The further we are into our cycle, the worse it gets.  If you are chronic, which I know nothing about, I can only imagine how it would be.  The cluster brain is the worst for us.  That's what makes me miss activities, etc. because it is too embarrassing.  It is a very insecure, out of body experience that you feel like everyone can see.  It is certainly not medication related because I, too, take as little as possible.  I have never taken pain medication for my headaches, but that's what I feel and act like.  My sister is lucky because the Imitrex works so well for her that it has prevented her from ever getting into that feeling anymore.  She isn't afraid of the Imitrex and in my opinion takes too much sometimes, but it has prevented her from all the build up over time that we think causes that cluster brain feeling.  During a cluster, your head goes through an enormous amount of stress.  She doesn't have it anymore although she was left with permanent eyelid droop from the years prior to Imitrex.  I just finished (knock on wood) my 8 week cycle and have had some luck with low dose Zyprexa for that feeling.  I am taking 1.25mg which is half of the lowest dose (2.5) then will go to half of that.  I did this already a couple of weeks ago, but didn't taper well enough or still in shadows so I am doing it over again.  I hate medication, but I hate that cluster brain almost worst than the clusters.  The headaches are terrible, but they are over soon and usually late at night, but the cluster brain goes on and on.  I hear you!   
Joni

Grace-I didn't mean my sister was over the clusters...just the cluster brain feeling.  I wish you could speak with us on the phone right now and see the difference in us.  We are both in cycle and you can't tell it at all when you talk to her, but you would know something isn't right with me or that I don't feel well.  However, I am already better today because of the Zyprexa I started yesterday.  I don't know the best answer...I am just telling you what we have done so far.  Good luck!  -Joni

Just want to add a "ditto' to what Marc said and a big huge....save your money on the accupunture thing.

I've been chronic for 22 years now and have never had the after-symtoms you describe.   Tired and worn out, sore from banging my head, yes...but not the vertigo or bumblebee effect.

Grace first let me say I am sorry to hear what you are going through and that I understand completely!!!

I too am chronic CH and I would describe my after affects a bit differently, but in some aspects they are quite similar.

I often have trouble speaking and thinking before, during and after a CH hit, whether I was able to abort or not.

There have been times that I haven't been myself or been able to function, think, speak correctly after a CH hit for approximately 5 hours (which was the longest 'recovery' time to date for me.) During this extended recovery time I definitely felt as if I was in a complete fog.

You are not alone there are a few of us who have suffered similar things to what you describe, whether chronic or not.

I hope things get better for you soon!!

Hi Grace and I'm so sorry you have to deal with this horror. I too agree with Marc. Accupuncture is way down the list for serious treatment.

For me anyway, so is anything having to do with Chiropractors. I realize your experience was for something other than CH but I doubt it had anything to do with your developing CH either.

While I had only episodic CH, I understand your zombie feelings...at least until it was diagnosed. It did knock me around a bit but I had a lot of help from a neurologist and a lot of RNs and medical types in the family. They let me be and reminded me all the time that I wasn't about to explode or worse.

I'm also wondering if some of your drugs might have some other kind effect. Our reactions are not always what you find on line.

From what I now know, O2 has the best record here.

Good luck and stick around.

Charlie

Sorry for all you're going through Grace!
So much good advice here already so I'll just say ditto to it all.
The way Joni described "Cluster Brain" (good one Joni!) is pretty much how it is for me too. I agree, it's almost worse than the headaches themselves. Everyone I know and work with notices that something's just not right. They always ask me if I'm feelin' ok. I had 2 ask me today. I'm at the peak of my current cycle. I've been doing a good job of fighting them off but a few have snuck through the last few days so now I'm in "cluster brain". Looking at 4 more weeks or so in my cycle. I can't imagine what it's like for you chronics!  :o
Take care and good luck!  :)

Joni...all I can say is a big THANK YOU!  As I would not wish this on my worst enemy, but just the fact that someone else feels the same way is actually a relief!  I think it's a vicious cycle...the headaches, then the weirdness, then worrying about the weirdness only makes it worse, and on and on we go.  And yes...like you said, I do believe the cluster brain is worse than the headaches.  Not in form of pain, but if IT would go away and let me be normal, I could get thru the headache pain.  God Almighty this is crazy. 
Last night I tried 2 Kudzu pills and altho I had another CH, it never materialized into a full blown attack.  Don't know if it was the kudzu, or just coincidence.  Will check out the zyprexa.   
THANKS AGAIN EVERYONE

Grace-
Glad I could bring some relief to your worry.  Continue to see your doctor and tell him/her how you feel.  I am seeing my doctor again today for follow up, however, he is an internist, but he is smart, interested, and has other patients with Clusters.  I'll let you know if I find out anything interesting.
-Joni   

Hey Grace,

I get a real burnt out "fried brain" synapses not firing well kinda feeling after a CH.

I've used acupuncture with tremendous success for tendonitis, but not CH. People don't seem to respond to it for CH.

Understood you don't wanna use presc. drugs..have you noticed the great success some are having with Taurine (often along with the Kudzu and melatonin you are trying) for a preventative? Not to mention mother nature's own RC seeds.

I never ever take any kinda drug myself when out of cycle, but I'll sure take 'em to avoid CH attacks! I feel that use of imitrex is actually less damaging for me than letting a CH hit rip my brain up.

Hi Grace,

Good luck with this and try to keep your chin up.

Usually after I get hit bad, I feel really wiped out physically.  It's probably the body "crashing" from the adrenaline rush of the pain and anxiety. 

Also, I really don't want to be around anyone or even talk on the phone til I start to feel somewhat normal again.  And that's by my choice, because I really don't want family to see me like that.

~Peace out

Marc123 wrote on Oct 6^th, 2009 at 2:55pm:

Hi Grace, Good luck with this and try to keep your chin up. Usually after I get hit bad, I feel really wiped out physically.  It's probably the body "crashing" from the adrenaline rush of the pain and anxiety.  Also, I really don't want to be around anyone or even talk on the phone til I start to feel somewhat normal again.  And that's by my choice, because I really don't want family to see me like that. ~Peace out

I'm exactly like this.  The worse is at work in the past without meds trying to fight out an attack.  I would just leave and sit in my car and ride it out.  At home, I just disappear to the bedroom and make space for the dance....that is until December when I get O2.
I'm in remission at the moment so i'm in the clear.

what Marc and Joni said.  I'm also with Seaworthy on the accupuncture.  Save the money.

Kudzu has been a great preventative for me.  Not 100% but really helps.  Taking two at night won't stop them that quickly, but over a few days you should see some relief.  I don't think two a day will be sufficient though.  I was taking 4, but recently stepped it up to 6 a day (2 in AM, 2 @ lunch, 2 @ night) and as long as I don't skip dosages have gone a month w/out O2.  Had to miss a couple of days last week and the last three days have been bad again, so I plan to make sure I have it regularly.

Jerry

1)  It is great that we have discussed the "Cluster Brain" feeling.  I don't remember seeing it discussed before.    :)


2)  Does anyone know the safety and possible side effects of Kudzu?  Also, where do you get it?    :-?

I take Kudzu and have had absolutely no ill side effects aside from it lowering the intensity and frequency of my CH hits.  I take it along with my regular CH medication verapamil.

Information on Kudzu
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You can purchase it here START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE or at a GNC if they carry it.  I prefer to get mine online it's cheaper that way.  I order the Kudzu Root Extract by Natures Way 50 caplets per bottle.  I'd put a direct link to it here but it's an "active" server page so it wouldn't load correctly anyway.  Just do a search on the site for Kudzu root and it should come up.

you can get it online. I used to get mine from iHerb. There are different forms and also formulas with kudzu in them. I used a liquid form concentrate in grain base alcohol and dropper for 14 months. Last time I checked they have a liquid version in glucose syrup, but both that and the tablets didn't work for me.

If you are diabetic and take meds, kudzu can make your medication work better, so you should monitor that if it's an issue.

It's great stuff.  It also completely cut out the migraines I used to have along with high cycles. I have not had a migraine since.

Charlotte

ps I'm chronic ch & also have some other shorter headaches.  Marc & Potter both mentioned watching out for changes. They can indicate something additional is happening, and sometimes your neuro can help you with it.

For me, the combo of headaches mess up my short term memories sometimes and is very distracting when they all occur during the same time frame.

No meds actually stop it for me, but they make it easier to bear.  The latest thing the neuro tried is botox and it kills the pain from the outside although the headaches still occur, and works in varrying degrees for 6 to 10 weeks and can be repeated as long as it still helps.

If you get O2, please take articles that stress high flow so your neuro understands it needs to be at least 10 & much higher. The older articles say 8 and that works for some of us but most need higher flow.

I took 2 more kudzu last night and no headache:)  Again, I don't know if it is coincidental or not, but I'll take it.  I purchased mine from Puritans Pride online and got 3 bottles for like 10 bucks.  I also had bloodwork done recently and noticed my B12 was low. It was noted that this could result in neuropsychosis.  So I'm taking B12 as well, along with the magnesium for the twitching.  Jonie..I researched the drug you told me about starting with a 'z' (I lost the paper I wrote it on)..anyway, the side effects quoted by those that take it are horrendous, altho not everyone has them, I'm just too paranoid to try.  But if someone said they were getting good results from dog crap on a stick, we'd all be out buying a dog.  So I understand that if 'something' is taking away this insane pain, all caution is thrown to the wind.  The reason I am so against pharmaceuticals is that I am convinced my mom got Lou Gehrig's (ALS) from taking a statin for her cholesterol, which she fought against the doctors for many years before relenting.  It cost her her life. And not a pretty way to go. Not to say that everyone who takes a statin will get ALS, but there's certain people who are drug sensitive and statins trigger this disease (Peoplespharmacy.com and WHO ((World Health Organization on Statins)) Anyway, I digress...sorry.  My neuro called last night and is setting me up with oxygen home delivery.  We'll see how that goes. So Joni: give Kudzu a try, maybe it will help you.  I wish I had a magic wand and I'd 'wave' us all well.  I appreciate all the feedback from each and every one of you.

Be sure to read the "oxygen info" information in order to get the maximum benefit.

Will do...thanks Marc.  Have a pain-free day!

Just read your post/s Grace.  I can definitely relate.  The best way for me to describe it is a feeling of unreality.  I have had to deal with anxiety disorder for a couple of decades now, independent of my CH's cycles.  Have had the anxiety under control for many years  but there was a time when I would experience what is called "free floating anxiety".  It is a terribly uncomfortable feeling with no apparent relief.  At times, I felt I had to grab the nearest thing to me because it felt like I was going to fall off the face of the earth.  Blurred vision,  vertigo, ringing in the ears, extreme fatigue were all part of it.  Looking back, I believe this was originally triggered by a very long extended period of stress in my life.  Incidentally, I had a few weeks of that constant, uncomfortable feeling during my last cluster cycle which I totally blame on the stress a new cycle brings into my life.  Does any of this sound familiar to you?  Hope this helps.

Randyvv...YES!  This is exactly how I feel. And since I have chronic CHs, I feel this way every freakin day.  And the 'fight or flight' syndrome kicks in which probably makes it worse.  I told my husband I feel like the world is turning and I'm on the outside edge trying to get back in.  I have had 2 horrendous episodes of vertigo since my clusters started, but on a daily basis it's like mini vertigo and this huge feeling of unreality.  (Well put on your part)  I feel removed.  I spoke with my Neuro on this and he said that these headaches are so debilitating and it's just the after effects (which is constant since I'm chronic).  Oh isn't this fun!! And these are stressful TIMES we live in, no doubt...which doesn't help any of us in any way.  But I truly did think I was going crazy until I received replies on this message board of those who have experienced it also.  So I send back to you a BIG THANK YOU ...you've helped immensely Randy.  I am determined to find an answer to these 'things'.  As Don Henley says...I will not go quietly!

Sounds like we are very similar Grace.  The "outside edge" analogy really struck a chord with me.  You are definitely experiencing the same thing.  You seem to have the necessary, take control, attitude required to get back on track with a normal life.  Or as normal as can be expected given the circumstances.  For me, there was no miracle doctor, drug, or religion that helped.  In the end, it was a combination of "all of the above".  Self education, tons of reading, seeking out & speaking with others in the same boat, seeing different specialists, trying different drug therapies, practicing relaxation techniques, massage therapy.  There was no magic, just allot of determination, trial & error, & hard work to get back to a state of relative peace.  This web site has helped me a great deal.  It's comforting just to know it is here.  Hang in there Grace, you will succeed.

Hey Grace-
I told you I would get back to you after the doc.  So far, I had a CT scan of my face, ear area, and neck.  It was normal.  I will prob have more when I ever get into the Neurologist because I have an appointment with a new one but it is not until January!  I am stopping the Zyprexa (great for occasional use to abort) and increasing the Verapamil.  I forgot to tell you about that.  It is a blood pressure medication and works WELL to control clusters.  Tomorrow will be 2 weeks since my last headache but I am in Cluster Brain badly because my cycle was so heavy.  So...I am to increase the Verapamil as if I were still having the headaches and if that doesn't work, I am to start a Medral pack (steroid dose pack) for the inflamation left in my head causing the weirdness.  I was really suppose to do both at the same time, but I will not do that.  Too chicken.  If the Verapamil increase doesn't work, I will then consider the Medral pack.  I don't like the thought of the Zyprexa either, but I knew nothing about it when he gave me the samples and I was desperate...and it worked.  My daughter also monitors me closely...she is a pharmacist.  I will let you know how things go.  If I were you, I would try the Verapamil due to the least amount of serious side effects (unless you take large doses).  I am taking 60mg divided into 3 doses per day right now.  That is a very low dose but I am very sensitive to medication and rarely need much of anything.  Most people seem to take much, much more on here and I may have to as well next time...who knows.  Hope this helps!  That's all I know for now.

Joni    :)
      

Joni...Did you have an MRI of your brain? Sorry if you've mentioned it before and I missed it...I just wasn't sure.  Glad you're stopping the Zyprexa...that sounded like scary stuff.  As for Verapamil and it being a blood pressure med...my BP is really low.  Sometimes 90/60, 80/40.  Had this checked as well and was told I would probably live longer than most unless I was run over by a bus.  Really..that's what the specialist said. So I don't know if a BP med would be appropriate.  What are RC seeds?  I've also considered having my Neuro ordering an MRI for my neck/sinuses/carotids, whatever.   I also sent you a message which I don't know if you got because I'm computer challenged as well sometimes, but I mentioned menopause.  I noticed you're 55 and I'm about to be 57 and have been going thru menopause for 11 years.  Someone mentioned to me that Ch's often come at the end of menopause.  Have you ever heard  anything like this?  Also, and I know I'm jumping from topic to topic, but it's because there are so many questions I want to ask...but do you ever have trouble with your eyes...not the droopy eyelid thing, but almost like your vision isn't quite acute as it normally is.?  Also, have you tried the kudzu/melatonin? Last night I took the kudzu before bed, but the beast came knocking on my door.  Didn't quite get all the way in but all night I had some degree of pain.  I fell asleep finally with an ice bag on my head.   Also I am a smoker, which probably doesn't help matters, but sometimes it's the only thing that keeps my nerves in check. OK, I'm rattling on like a broken chatty Kathy, so I'll stop bombarding you with questions for now.  I'm so glad you got back to me tho.  Please keep me posted on your progress as well.

Randy...Thanks for the encouraging words.  It is really great to have you all to talk to.   

Well now, you can all go right ahead and call me gobsmacked!!!  Reading this thread has me so encouraged I can't even express it!   :D

I started another thread asking folks about before and after symptoms thinking I had not seen anything about my experiences.   Grace responded and suggested I read this thread.  Funny thing is, just 2-3 messages in and I realized I had in fact read it before!!  What the Heck?!?!    If that isn't proof of the confusion we have been speaking of, what is?!

I had my last BIG hit Monday evening and am only now feeling close to normal.  Three nights of very little (3-4 hours) sleep (I'm beginning to wonder if there weren't one or more lower level Kip HA?) finally had me resorting to taking sleep medication last night around 9:00 PM.  Even that didn't work till about 2:00 AM. By then, I was completely agitated physically and finally just collapsed. 

I've been unable to think clearly, can't remember little things and in my other post, I described it as feeling "hungover".  While there has been the weariness and weakness of the "physical" side of things, the more distressing part is what many of you are describing, the "cognitive" issues.  BLECH!!!

While it has been disturbing to hear others suffer from the aftermath of the CH as I do, it sure eases the isolation and reduces the sense of uniqueness.  Particularly hearing that some folks go a few days between hits has been revealing.  I had been doubting the diagnosis sinced I have gone as much as 4-5 days between attacks but then can have multiple a day for 2-3 days.

Thanks all, I'll go exhale now   ;)

Gary

It is a relief, isn't it, just to know someone else is feeling this weird crap.  I can't thank Joni and Randyvv enough..they don't realize the extent to which they've helped me.  Because of them, I'm coping with this oh so much better.  At least I know I'm not going crazy, altho that might be debateable.  However, it helps to know you're not alone.  But once you recognize it for what it is, it's actually easier to control.  So hop on in this boat Gary...there's always room for more.

Grace-
It is so good to hear that you feel better about feeling so bad!  Isn't that a funny sentence?!  But you, and everyone else, know what I mean.  Thank goodness for this site!  Let me know how you are doing.

My headaches are completely gone!  Woohoo!  But...I don't feel well because of the Verapamil, and every time I try to cut it down, I get that pressure in my eye/ear/head exactly where my cluster pain is.  I am so discouraged about that, but I'll eventually get it worked out.  By now, I know that whatever works well for me to stop the headaches is also going to be very difficult to taper off of without them coming back.  Years ago, when I didn't take anything for them (most of my life), I never had that problem.  When they were over, they were over and I was back to normal!  Of course, I was younger then, too.  Another variable to consider is that I am now retired from teaching so my routine has changed dramatically.  It is so hard to believe that I taught school for 31 years with these things and only twice did I ever have to miss school for an extended length of time. 

The only thing that has scared me on this site is that they can change from episodic to chronic.  I had never heard of that before coming here and now that haunts me, sometimes.  I don't know how those people handle it!  Bless their hearts!!!

-Joni

Good to hear from you too, Joni.  Sorry you're having trouble with the lingering effects of Verapamil, but it's wonderful that your clusters are gone for now.  My kudzu and taurine seem to be doing something because my headaches are changing ...less severe and less often.  I guess if you can go from episodic to chronic, you can also go from chronic to episodic...you think?  All I know is that I'm not having them every night like I was.  I do get this funny feeling in the back of my head like porcupine needles, but I don't know if it's related to clusters.  It's nothing I can't handle, it's just annoying. But my painic attacks seem to have vanished and I have you all to thank for that. 
My best friend was an airline flight attendant and she was having all these changes occur...cognitive issues, periodic blindness, muscle weakness, etc.  She went to 7 doctors before she was properly diagnosed with MS.  She always told me that the scariest thing about going thru this was not knowing what was wrong...once it was diagnosed, she could deal with it to the best of her ability.  She has since passed away, but she gave it a good fight.  But I know what she means...when I was going thru all that weirdness, feeling like I was on the outside looking in, woozy and unsteady....I thought...what the hell is wrong with me?  Is there more going on than Clusters?  I had almost convinced myself that I was going crazy or dying, or both.  But you all put a name to it, and then I knew I wasn't the only one experiencing these horrible feelings.  I think I was so afraid that I put myself into painic mode.  So everything was compounded.  Now I have a handle on it and I'm going to be fine. I think everyone on this site has helped someone in some way, and isn't that rewarding?  My husband and I both agree that this site is the best thing that has happened to me!  So Joni...enjoy your cluster-free days but stay close...someone here always needs you. 

grace wrote on Oct 25^th, 2009 at 7:01pm:

Good to hear from you too, Joni.  Sorry you're having trouble with the lingering effects of Verapamil, but it's wonderful that your clusters are gone for now.  My kudzu and taurine seem to be doing something because my headaches are changing ...less severe and less often.  I guess if you can go from episodic to chronic, you can also go from chronic to episodic...you think?  All I know is that I'm not having them every night like I was.  I do get this funny feeling in the back of my head like porcupine needles, but I don't know if it's related to clusters.  It's nothing I can't handle, it's just annoying. But my painic attacks seem to have vanished and I have you all to thank for that.  My best friend was an airline flight attendant and she was having all these changes occur...cognitive issues, periodic blindness, muscle weakness, etc.  She went to 7 doctors before she was properly diagnosed with MS.  She always told me that the scariest thing about going thru this was not knowing what was wrong...once it was diagnosed, she could deal with it to the best of her ability.  She has since passed away, but she gave it a good fight.  But I know what she means...when I was going thru all that weirdness, feeling like I was on the outside looking in, woozy and unsteady....I thought...what the hell is wrong with me?  Is there more going on than Clusters?  I had almost convinced myself that I was going crazy or dying, or both.  But you all put a name to it, and then I knew I wasn't the only one experiencing these horrible feelings.  I think I was so afraid that I put myself into painic mode.  So everything was compounded.  Now I have a handle on it and I'm going to be fine. I think everyone on this site has helped someone in some way, and isn't that rewarding?  My husband and I both agree that this site is the best thing that has happened to me!  So Joni...enjoy your cluster-free days but stay close...someone here always needs you.

Grace, it is good to hear you are doing better.  When my headaches get less severe and less often, they are usually winding down.  Maybe yours will!  It would be great to go from chronic to episodic!  I wish that for you.  I have had all sorts of weird feelings in my head during a bout with headaches, so the porcupine thing is probably related.  I did have needle like tingling on the top and side of my head but I don't remember the back.  I know for sure I would have had panic attacks if it hadn't been that so many in my family had Clusters and I grew up seeing it and knowing they all were okay!  My mother's finally stopped as she aged and my sister's have gotten better (she is 7 years older than me).  I realize that doesn't mean mine will, but it gives me hope.  Even now, every time I have a bad cycle, I sometimes wonder about all the things I am feeling and seem to forget that it is just from the headaches, exhaustion, and medication.  It is so hard to keep a clear head when you feel so badly!  You just can't see the forest for the trees!   I won't leave the site.  There is always something to learn and share. 

Joni