Since being a member of CH.com, i've seen many sufferes
come for answers and never to be seen or heard of again.


My  :question is. Where are you now, and how ya going.

Cheers, Hoppy.

hey hoppy,
  well im picking I could be labelled as one of them  LOL
I came here earlier in the year, been a sufferer for 3 years.
I was pretty well at my limits, both physically and mentally, in fact I didn't realise how much so.
anyway, ive been on the vit regime now for 6 months and im currently about to get my third blood test next week.
my cycle started in march and although its been going good over the last 5 or 6 weeks, its lasted for nearly 8 months in varying degrees.  normally it lasts for about a month.  my hits now are few and far between, only kip 1 but they appear 2 or 3 times a week, just to let me know its still hanging around.  I went off verapamil 3 months ago and it immediately ramped up to kip 4-5's so I went back on them straight away. im only taking 180mg, not a large dose, so im sticking with it for now and the regime.
I guess for me, im on a waiting game, im episodic, so I don't know whats worked, whats working and am I still going to get a huge cycle hit between now and January, which is what happened last year. 
im quietly confident that the regime has helped me and along with the 180mg of verapamil, that this is my answer.
but its a waiting game for me for the next 6 months I suppose,   god im hoping like hell that its going to work for me. I was truly at my witts end when I joined here early this year.   the hard part at the moment is just waiting to see if it returns to the same strength,  I leave home every day with my little pack,  a couple of red bull, and imigran tablets just in case it returns.  im not fully relaxed even though im only getting little hits every now and then, dredding with anticipation of it return.   its hard to explain.
so I was hoping to start a thread with the great news the regime has worked for me, and im confident it has, but just have to wait another few months or so to confirm.
I do pop in here regularly and catch up on posts and see how everyones going, I should in hindsight contribute more.
  but a special thankyou to mike n.z who when I first joined was right there offering help and personal messages, you don't know how gratefully received that was, I was in quite a mess....   and to batch for his help with the regime.
hopefully in a few months I can post with some positive news.......          this place rocks !!!!

regards
colin

G'day Colin,
great to hear from you, and your chucking everything you've
got at the  [smiley=evil.gif]. Don't sit waiting for him to visit
it may never happen. Just enjoy each day one by one. looking forward to hearing from you later,with lots of good
news.

Cheers, Hoppy.

Almost 2 years later, still doing the D3 and still PF!!! I swing through here and read every so often...  [smiley=hiya.gif]

Another D-3 success story, freaking awesome! [smiley=thumbsup.gif]

Joe

Hoppy,

Im here, Almost daily. But I don't post nearly as much as I use too. Maybe that's the case for some others? But if I see something interesting or a person that has a problem I can relate to or help with, then I sound off.

Coach Bill

Hi Coach Bill,
I'ts good to hear from you. "When you sound off".  :)

Joe wrote,

Another D-3 success story, freaking awesome!

Ditto to that.

Hoppy.

Speaking for myself, I only get on when I'm in cycle.  I tend to look for ideas and to see if there is anything new to try.  My originial cycles were about every two years and much more predictable, but it made it hard to assess if things were working.  I would try something and it would go away, then come back next cycle and the previous abortive wouldn't work.  So I would try another suggestion. 

I took calcium channel blockers for a time as a daily treatment and that worked for me, but with such a long remission period, my choice was dealing with the effects of the medication everyday or dealing with the beast for a few months every two years.  I chose to stop the meds after 6 months.  I guess the meds just pushed it off so I got all the headaches I had pushed off after stopping the treatment.  Ever since then, my cycles have been less predictable and the shadows more frequent, so I tend to be more cautious trying new things.  It's good to have this site to see what others have experienced from a treatment.

Mostly I use the site to see that other people who know what I'm going through and I can add something with people who will get what I'm saying.

Thanks for the help!

6 Weeks into Cycle. On Verapamil 80mg 3 x a day. Was stupidly taking Sumatriptan twice daily until a week ago as i'm a bit of a rookie and was scared of ever having Kip 9/10s again but cut this down to 1 before bed and stopped 2 days ago. My neurologist suggested I ramped up my Verapamil to 80mg x 3 starting last monday (which seems to have helped) and told me about rebound headaches (medication overuse headaches)

Mainly feel shadows and head pressure of around Kip 3 at the moment. Sometimes Kip 5. Haven't had anything above a Kip 7 in a few weeks now as i seem to respond well to Verapmil medication that has now built up in my system and Red Bull to bust if it get's a bit too much.


Suspect i'm suffering rebound headaches from the Sumatriptan i stopped taking daily 2 days ago as i have Kip 3/mild shadows knocking for large portions of the day  (and at this moment).

Hopefully this one is tapering down? But who knows..

Can anyone tell me how i will tell it is on it's way out as the Verapamil seems to mask the symptoms pretty well.

Hi jish,
I've replied to your ? on your other post.

Hoppy.

Thanks Hoppy for the invite,

I was last on this site, other than some frivolities with Hoppy, and other brief posts, last April. At that time I was having daily CHs at Kip 7-8 sometimes for 3 hours. At the time I had been on the D-3 regime for about 5 weeks. I quickly went to the same neurologist a general neurologist, I went to the last time I had a cycle, 7 years ago. At that time I was diagnosed (apparently mis-diagnosed) with Idiopathic Horner’s Syndrome. At that time he tried Depakote before settling on Lithium which ended the cycle in about 6 weeks.

Given this track record in quickly ending a cycle and my interest in having continuity of care I went back to him and he first tried Indomethicin before including Lithium. His initial diagnosis was Cluster headaches and paroxysmal hemicranias. I did this based on history knowing that he was a general neurologist and one not specializing in head aches. At the time that he saw me he also prescribed oxygen which was and is a god send though his prescription was only for 8/lpm. I quickly went to Amazon and bought a regulator for 25/lpm which has worked well.

I have continued on the lithium and gradually have decreased the need for oxygen. In May after 2 months in which I did not experience any effect from the D-3, I stopped that regime. My D-3 levels during this period were around 100ng/mol. The lithium has had a number of side effects that are unpleasant. One is a tremor that comes and goes. The other is that I have little energy. This from a person who usually has been in the top 99.5 percentile for VO2. Consequently I am pretty out of shape.

The daily head aches have been in the 1-3 range though this is mainly a function of their brevity with occasional excursions to the Kip 5-6 range maybe 1/week. They usually only last 5 seconds at the most and for this duration something that is 3 would be a 6 or 7 if it went on for 30 minutes. The other problem with these shadows is that they have been paired with far more painful episodes in the past.

About the first of October while seeing my PCP, I asked about my recorded allergy to Verapamil. She checked and decided that what caused her enter that, wasn’t really an allergy and she agreed to a trial of 120mg/day. After a week with few side effects she increased it to 180mg/day. It did seem to decrease the frequency, duration, and intensity of the shadows.

In mid October I saw my neurologist again and when I told him about the trial on Verapamil, he was surprised that it was being used for cluster headaches. I mentioned reviews in Headache that indicated it was the medication of choice. He disagreed and this served to reinforce that I made a mistake in not looking around for a neurologist with specialization in headaches. In talking with him we settled on a trial where we would decrease the lithium to 600/day. This was a failure after about 2 weeks when I found myself back on oxygen.

I am now back on Lithium 900mg/day, Verapamil 180mg/day and the D-3 regime. The Verapamil is something that my body barely tolerates, a bad rash, and mild cardiac interactions and so a higher dose is not advisable. I have been back on the D-3 regime for about 5 weeks by taking 20k/day and one day at 50K. I think that I am up in 60-100NG/mol. Range. I got tested and my level is 62.3. In 2 months I will have been in cycle for 1 year. A few days ago I had my first PF day in 10 months so maybe the D-3 is working! This last 10 months has been a roller coaster of despair and depression interspersed with times of hope. For example, today I had a CH that was 4-5 for about 2hrs. I want things to go the other direction.

What I have learned is the importance of finding a neurologist with specialization in headaches even if you have prior experience with someone who is a general neurologist. In retrospect I wish I had stayed on the D-3 for a longer period.

I check this site frequently and it is a treasure trove of information. The search function can turn up heaps of information on treatments and medications going back years. I also enjoy the concern and compassion shown by other posters. Everyone here has helped lengthen the periods of hope and shorten those of despair. I will be looking to find ways to contribute.


Lars

Hey Lars,

Ufda!  Glad to see you've started the anti-inflammatory regimen...

The 4-week accelerated vitamin D3 dosing schedule works out to 590,000 IU vitamin D3.  That should trigger a 25(OH)D response that adds an average of 60 ng/mL above your starting 25(OH)D serum concentration. 

As your 25(OH)D was 62 ng/mL, the dose of vitamin D3 needed at this point is roughly 15,000 IU/day until you get your next lab test.

Take care and please keep us posted.

V/R, Batch

G'day Lars,
I've just read about your battle with the [smiley=evil.gif].
I did'nt know you had that much of a fight on your hands
and that nothing seems to be working for you. Have you
noticed the posts, when taking the vitamin D3 Regime
to take it all with your main meal of the day and at least
seven hours after your last dose of Verapamil? I also noticed
you said you have been in the green zone for two months
but still got headaches. The thing is it can take up to three
months to kick in as it did for me, so don't despair. Also let
us know what part of the world you live. If your in the US
then Bob Johnson could help you find a good headache
specialist to confirm it is CH's your suffering and not one
of the many mimics. If you go another two months without
any relief then you will be cronic, and we don't want that
to happen do we.

Cheers my friend, Hoppy.

You're having a tough go of it right now, I totally agree with your assessment of your neuro, sounds like a nice man who simply does not have the expertise to treat CH. I stole this from Bob Johnson, how to locate a decent headache neuro:


General neurologists receive strikingly little training treating complex headache disorders. If you have the option, find a headache specialist.
=====
LOCATING HEADACHE SPECIALIST

1. Yellow Pages phone book: look for "Headache Clinics" in the M.D. section and look under "neurologist" where some docs will list speciality areas of practice.

2.  Call your hospital/medical center. They often have an office to assist in finding a physician. You may have to ask for the social worker/patient advocate.

3. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE ; On-line screen to find a physician.

4. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE Look for "Physician Finder" search box. They will send a list of M.D.s for your state.I suggest using this source for several reasons: first, we have read several messages from people who, even seeing neurologists, are unhappy with the quality of care and ATTITUDES they have encountered; second, the clinical director of the Jefferson (Philadelphia) Headache Clinic said, in late 1999, that upwards of 40%+ of U.S. doctors have poor training in treating headache and/or hold attitudes about headache ("hysterical female disorder") which block them from sympathetic and effective work with the patient; third, it's necessary to find a doctor who has experience, skill, and a set of attitudes which give hope of success. This is the best method I know of to find such a physician.

5. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE NEW certification program for "Headache Medicine" by the United Council for Neurologic Subspecialties, an independent, non-profit, professional medical organization.
        Since this is a new program, the initial listing is limited and so it should be checked each time you have an interest in locating a headache doctor.
=======
One of the major diagnostic problems is that there are a number of disorders which mimic Cluster but which are not primary headche disorders. It's requires some skill and experience to do a through diagnostic work-up.

My only other comment is how you look at your meds. Lithium or Verapamil are recognized as highly effective prevents in treating CH. They don't STOP  a cycle from occurring or end a cycle, they reduce the frequency and/or intensity of the attacks. I used Lithium for many years, at 1200 mg a day it would block 60-70% of my attacks. When I hadn't been hit at all for 2 weeks, I'd wean off of it to confirm my cycle was done.

Joe

Joe, Hoppy and Batch

Thank you for the responses. Joe, I used one of the search tools to id a neurologist with a specialty in Headaches. In Seattle they are quite rare. The other two in the Seattle Metro area are at the U of W headache clinic and they are not taking new patients. Anyway, I'm working the referral system with my PCP and am hopeful that he will be someone I can work with over the years.

Batch and Hoppy, Since that reading of 62, I have 7 more days of 20,000IU/day and one day of 50,000IU. My plan is to go two more weeks at 20,000IU and throw in another loading day of 50,000IU before dropping to what I hope will be a stable 10,000IU/day. This I would continue til my next test the end of December. I want to be between 75-80.

I will check in now and again.

Lars

Hi Lars,
Rather than drop back to 10,000iu D3. I tend to think 15,000
would be more beneficial.Then hopefully when your pain free
drop back to 10,000iu vitamin D3.

Cheers, Hoppy.

Hi Lars,

Swedish shut down the Headache part of the Pain and Headache clinic downtown Seattle when they lost their headache specialist (and a dang good one)..... then farmed out headache patients to staff neuros....certainly not ideal.  Fortunately I lucked into a good one at the Issaquah campus of Swedish...Dr Lily Jung Henson. She is the medical director/chief of staff there ....and a hoot to boot  8-). Quite open to the "newer" ideas expounded here (you won't hear O2 doesn't work from her)...and a firm believer in trusting the patient to know their own body better than she does.

Phone 425 313 7070
Address 751 NE Blakely Dr Suite 4020
Issaquah, Wa

Best

Jon

Hi Jon,
You little ripper.

Cheers, Hoppy.

You're a good man Jon......but you already knew that! ;) Good to hear from ya.

Joe

Hoppy,

Thanks for the tip on the D-3 level as I hopefully reach PF nirvana. I'm grateful that here we can get D-3 in 5000IU caps. It is continually surprising with what happens with the beast. Since May with  the lithium there has been a gradual diminution  in the intensity, and lengths of the attacks. That was til last night included one at kip 8 at the 11:00pm regular slot and another this morning that was kip 7 at the 7:30am regular slot. Thank goodness for 02. So again, I'm hoping for CH nirvana

Jon,

Thanks so much for the name. I'm going to hold that in reserve as I have the name of a doc in Federal Way who is accredited by the International Headache Society and I see his practice is in headaches. His name is John S. Wendt, 253-838-7134. It sounds like there are possibilities to get in to see him soon. If not, I'll try your doctor in Issaquah. It sounds like she would be great to work with. I'm also looking for someone long term as this maybe around for a while.

Those of us with CHs have a gift that is sometimes hard to appreciate and that is the sweetness and joy of a PF day or even just a moment!

Lars