Comments for Headaches--Chronic Paroxysmal Hemicrania

Comment on Can’t sleep by A

Tue, 14 Oct 2008 17:04:47 +0000

Hi Gina,

After a year of searching for an answer I think I have found it!! Can I say how happy I am and pass on a little bit of information that has helped me. I, unknowingly, have been fighting my headaches for a year…brain tumour thoughts have cirlced througout my head on a daily basis…even after a fully clear MRI. I started on amitriptyline and another anti-anxiety pill(because the unknown diagnosis was causing severe anxiety-attacks for myself)after gaining 20lbs on that crap and feeling horrible from the side-effects I kicked them to the curb. I started studying “natural” ways to fight my anxiety…because when I was on cymbalta I noticed a huge decrease in headaches. I found 5-HTP which is a form or trytophan and seems to offer the same increase in serotonin without the crappy side-effects. I take it right before bed and my insomonia has been gone for over 6mths, even when I do wake up at 2am I can still get back to sleep. I can’t say why this helps with the headaches but I did go off it for over a month and my headaches came back with a vengenance!!! It’s worth a try for you but expect a good 3 wks before seeing any results. Always take it at night time right before bed..and with the little ones that I do get..Aspirin extra strength helps over anything else out there!!!

Good luck…Allene:))

Comment on CPH —I HATE IT! by Louise Brown

Louise Brown — Thu, 02 Oct 2008 17:44:05 +0000

hello to all cph and ch sufferers
I was diagnosed 6 years ago at Nuffield hosp in Nottingham (I have been having these attacks for about 13 years now) I was diagnosed with cph with a cross over to cluster and I think I was just relieved that someone believed me as my local hopsital treated me as though I was a crazy woman that had mental issues and made up the pain. I was pushed from ENT (had sinus op) they then gave up and pushed me over to the dental department who said I had wonderful teeth, then back to ENT who said there was nothing more they could for me… It was only the fact that I was a dental nurse and my wonderful boss researched and sent me privately to nuffield hopsital… I had to try various medications (as some of you I would not have one day without pain) but then I had such a severe attack which left me unable to function as a normal human being, just putting one foot in front of the other would sent shock waves through my face and head… i was having up to 50 attacks of intermittent pain and facial/ eye drooping, i looked like a stroke victim… the medication that worked for me was called pizotifen, I was on this a number of months the only problem being i gained 2 stone in weght (it increases appetite). I withdrew from it when i felt much better and have been off it for some years now, still suffering pain but you learn to have high pain threshold when you are a cph sufferer.. sad news is i have had ongoing pain which is getting unbearable again so have just been prescribed same medication, so heres hoping i do not gain another 2 stone!!! but as you all know well in your worst state you beg for anything to take the pain away……

Comment on No more meds by Melody

Melody — Sat, 06 Sep 2008 06:14:37 +0000

I guess I am lucky…I have only been on the meds…Indomethacin…for two days…I was finally diagnosed with CPH on Wednesday and today it is Friday…I do not get the tired feeling, but…I do get some diareha…That part sucks, but the pharmacist said that once the body gets used to the drug that “May” pass…

I never had head trauma…In fact the first episode or “hit” as my husband and I call it came in September 1991…I only remember because I had just gone back to work after my maternity leave was over…I had been back about 2 weeks and “BAMMM” I was hit by a truck…Or so it felt…I was driving in to work and nearly got into a wreck from the severity of the “hit”…I went to work and had a couple more “hits” that night at work…I went to a neurologist about 2 weeks later because the “hits” were becoming constant…They gave me a MRI scan, put me on a seriously strong drug (can’t remember what) and damned near killed me…(literally, I had to have my stomach pumped…not a pleasant thing let me tell you)…Hence, I wrote off dealing with it medically…I dealt with it for 16+ years until finally while driving on I-5 with my husband I had a “hit”…he got really peaved off and told me, not asked me, to go to the doctor…He did not care what I thought anymore…

I went to my general practitioner and he refered me to a neurologist…I told my GP that there was no way I was going to Dr. ***** (I can’t say his name), the quack, and he said that was fine there was finally a new and highly sought after neurologist in town…I went and he was nearly excited when he knew what I had after only a couple of minutes…My MRI is next week, but he was 100% sure…I think he hit the nail on the head because it has been 36 hours since I had a “hit” and that is a record…17 years, and this is the first time EVER that I have not had a “hit”…

I am sorry about your discomfort…I guess I am lucky…I have cronic not seasonal and I am only having to take 75mg in the morning and 75 mg in the evening…I am not tired or sick…I am happy…

Comment on Can’t sleep by Melody

Melody — Sat, 06 Sep 2008 05:54:47 +0000

I have also got CPH. Mine was finally diagnosed only 2 days ago…I am totally excited that I have lived one enitre day without a single “hit”…My husband and I call the attacks “Hits”…I also have the cold sore problem, or at least we thought they were cold sores, but they are actually Shingles outbreaks…I take zovirax for that…I used to have the extreme trouble if the “cold sores” were on the right side because that is the side that I suffer my CPH on…about 5 years ago my doctor…a general practioner…told me that those are not cold sores or herpes simplex, that they are a form of shingles…he gave me to zovirax and now as soon as a cold sore hits I take the meds and the pain is 85% reduced…it still takes the same time for the cold sore/shingles to go away, but the extreme nerve pain is gone…and when suffering from the CPH at the same time, even being woken up at night with the CPH…I realize that I am rambling a bit, but I can totally understand your two issues…I am just grateful that 2 days ago I got the diagnosis from my new neurologist (the GOD) at least in my eyes…I was getting “hits” 2 to 5 times a day…though no nasal discharge or eye weeping, but still on the pain scale of 1 to 10 the pain was a 25…Totally Debilitating…I have now gone a whopping 36 hours without a single “hit”…

Sorry if I was no help, but like I said, your story is similar to mine in having the two problems.

Comment on my nose by Tmj

Tmj — Mon, 01 Sep 2008 23:18:42 +0000

I was thinking the same thing some sort of infection. Let us know how everything works out.

Comment on my nose by Don

Don — Sun, 31 Aug 2008 19:39:58 +0000

Have you gone to see a doctor, seems to me like you may have caused some type of sinus rupture of serious infection, especially if this has been lasting for days, keep us informed, I’m interested to see what you find out.

Comment on feeling better by Mandy

Mandy — Thu, 17 Jul 2008 10:37:35 +0000

Hi, I came across your blog yesterday while trying to get some info on PH. I’ve been suffering god-awful headaches for 37 years and was diagnosed with cluster headaches when I was about 20 or so (I’m now 48). Yesterday saw another nuerologist who isn’t convinced I have CH, but thinks I may have CPH although I show features of both Anyway, has put me on Indomethacin as a trial. Nothing in the past has ever worked, and I’ve tried the lot! I just want the pain to go away.

When you get free days don’t you just feel totally uplifted? WONDERFUL! The trick is to keep that feeling even when the darkeness threatens to descend, which is difficult I know. My heart goes out to you and all the others with this and other awful head pain.

Mandy

Comment on CPH —I HATE IT! by suzie

suzie — Wed, 14 May 2008 13:59:12 +0000

Hi, I have just been reading your comments. 3 weeks ago my husband was diagnosed with Cluster Headaches, but after speaking to the helpline at OUCH UK, they think he has CPH. Having read loads of medical stuff on it, the headaches sound very similar, but with the severe attacks his arms flail and tremor uncontrollably, none of the literature mentions this, - do any of you have this sort of attack? ~We are currently waiting for a referall for Queens Square Hospital as it seems they know a bit more than most other neurologists about CH and CPH.

Look forward to hearing from any of you to see what you think.

Suzie

Comment on my nose by h.m.hsia

h.m.hsia — Sat, 26 Apr 2008 14:28:33 +0000

Any kind of physical sensation is an indicator that either the Chi to the target area is blocked or Potassium are depleted, or both.

Looking down too long or no breakfast, always have headache after lunch. trapizium and two big muscle on both side of spine are in spasm.

looking to one side too long and the opposit side will have headache any time of the day. when upper 2/3 of SCM tighten up, you might experience dizzy and nausea.

nose problem always due to eat too late and too much at night,check both sides, at same level of your billy button,there are pain points.

above are the CAUSES-etiologies, when there is cause, there is cure- don’t looking down too long, don’t looking to one side too long, and don’t eat too late or too much.

High protein and high fat breakfast is essential which set the tune for the whole day. eat lunch and eat very lettle supper.

potassium supplement recommd or small amount of classic potato chips, wash down with small glass of soda for supper.

by the way, old injury must be treated oit will haunt you for rest of your life.

good luck.

Comment on my nose by Emily

Emily — Mon, 21 Apr 2008 22:37:41 +0000

Gina:

Have recently been diagnosed with a combination of cluster headache and CPH (at least that what two different groups of neurologist tell me)…Have had continual pain for last 5 months with minimal relief and numerous ER and Urgent Care visits to no avail. I am told some of my symptoms are atypical but most fall within the diagnositic range of these two disorders….

I have been a migraine sufferer for over 30 years, and never ever had anything like this - I date this constant headache to a couple of ERCP (an endoscopy type of surgery) procedures I had done 5 months ago. I wonder if anyone else can correspond their episodes to surgeries??

Indomethacin has helped but not cured the headache, also steroids - but have become insulin dependent due to prednisone - sooo no more prednisone for me after I step off it. I also am taking Reglan, Lamictal, and now Seroquel (for sleep aid). I have recently had an occipital nerve block but other than relieving some neck tension and making the back of my head sorta numb it has not helped.

Medications I have tried but did not help are Topamax (or Tippymax as I called it - couldn’t walk very well when I took it - weebles wobble but don’t fall down!!) verapamil LA, Inderal (had an allergic reaction), toradol injections, relpax (helps for about 4 hours), DHE infusions, Depakote infusions, and various narcotic/antinausea/antihistimine cocktails by ER docs.. I feel like a walking chemical depository! Still with headache!!

I was diagnosed while inpatient for status migrainosus at a hospital associated with a medical school - I at least had 4-5 neurologists in a group coming by and evaluating my symptoms, sometimes a group consensus works.

I have only 3-4 episodes per day where the pain gets worse.. This has been very disabling but I work in the IT industry and have the best bosses in the world.. Admitting the amount of disablilty has been the hardest for me..

Wishing you the best in your search for a cure or relief - don’t know what I would do with so many episodes per day - the number I have is bad enough. Thank you for your blog….I feel better knowing that when my docs say this is a tough disorder to treat, they are tellling the truth!

Emily