Hemicrania Continua

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JackStraw
Regular Member


Date Joined Jun 2011
Total Posts : 21
   Posted 6/15/2011 5:40 PM (GMT -6)   
Hey folks, newbie here. I have HC for 18 months now. The only thing that has given me consistent relief is Indomethacine but I cannot take it due to side effects. Sounds familiar right? A prednisone taper works wonder too.....but that stuff will cause your hips to fall off if you take it too long. Unless I overlooked it on this board, I have not seen any references to Celebrex being used for HC. I wonder if anyone has tried it with any success? It is the next drug on my list to try.

Currently I am not on any prescribed meds. I am trying a vitamin regimen found to be helpful to some cluster headache sufferers on another board. It consists of vitamin D3, Fish Oil, Magnesium/Calcium/Zinc. This is an anti-inflammatory combo. Also my Harry Potter potion, Scullcap and Licorice root tincture....5 drops sublingual 3-5 times per day. I've been on this regimen for about one month and I have no doubt it has had some effect. The thing is that I am trying to achieve consistant pain free time. So far have been unable. I'm getting more very noticable pain free windows but still have the exacerbations. Been using Bayer aspirin and Red Bull for relief. Some days I don't have to take the aspirin...some days I have to take 2-3 thousand mg. Don't freak out, but IV also thrown is some tryptamine hallucinogens with some degree of relief. Low doses (sub-psychedelic threshold) seem to work best.

So goes on the search for consistent relief. Back to my question...Celebrex anyone?

Thanks for your time and I wish all of you who are suffering with chronic pain will find relief!

JS

Susan R
Veteran Member


Date Joined Dec 2010
Total Posts : 511
   Posted 6/17/2011 7:11 AM (GMT -6)   
hi- I saw you wrote on another thread bringing up celebrex, so I hunted your thread down!! I am on celebrex and have been for 2 years, but not for migraine, another condition. I have never even considered the celebrex would be helpful for the headache, but as I think back over the past 2 years, I have had less of my mild headaches. You know those headaches that are just annoying, but dont really disrupt your day or your life. These are the headaches I dont bother taking medication for, since I like to take as little meds as possible. Anyway....celebrex. I have not had any side effects on the celebrex. I take 400 mg daily.

Just a bit of info, and I dont know any of your history, so this may not help but.....never hurts to give out info.
I started having migraines when I was 9, but I wasnt diagnosed until I was in my late teens. One of the things that helped, having a food allergy test. I found out that I am allergic to corn and wheat, which you know is in EVERYTHING. I also found out that I have season allergies, but I knew that. So, once I found out the food allergies, I tried to be more aware of what I eat, which then helped with some of the headaches. If you havent been food allergy tested, I would suggest you try this route too. Again, never too much info. You can allergy test at home, google food allergy testing and it will explain how to do so.

With headaches each headache is different, and even if you find something that works for one type of headache doesnt mean it will work for the one you have the next time. I suggest keeping a headache diary, UBIQI, is online and also an app.....works pretty good and my sons neurologist is extremely impressed with the info it tracks.

Again, I hope some of this is helpful and not completely repetitive to what you already know. I wish you the best of luck becoming pain-free

Susan
Husband 39 at diagnosis 12/2010.
No symptoms, PSA 18 in 10/2010
one month antibiotic then PSA 12.6 in 11/2010
biopsy end of 11/2010 Gleason 6
Da Vinci prostatectomy 2/2/2011
1-2 pads per day up till around May 2011, then 0!!!
Taking 20 mg levitra daily June 2011.
1st post-op PSA less than .05
3 month post surgery = undetectable


staging: pT2aNo, Gleason6

JackStraw
Regular Member


Date Joined Jun 2011
Total Posts : 21
   Posted 6/17/2011 8:07 PM (GMT -6)   
Thanks for the reply Susan. I have never considered food allergy so I will look into it. I will also check out the diary. I have kept a diary here and there for the last 18 months but I get slack about it. I'm 44 and in August of 2009 I developed an off sinus condition that I just could not shake. The only symptom was a very stuffy nose. I had never used OTC nasal spray but I ended up "hooked" on Afrin. It took two rounds of Prednisone to get off that stuff and clear my sinus condition. The ordeal took 3 months. In November, the sinuses were cleared but I was left with what I called "pressure" in the top right front quadrant of my head. Had a CT, negative. Saw a Nero in December and was diagnosed with "cluster variant". The first drug he have me was Indomethacin...smart move now that I look back. My response was positive but not to my satisfaction. From there I tried various other drugs, verapamil, anti-convulsants, beta-blockers.

I went back on Indocin in March of this year. It got me through for a time but then the gastro side effects became intolerable so I stopped. Celebrex is perhaps a less effective NSAID but I was thinking I may be able to tolerate it. However, for the last several nights, I have had the clearest head since the month long remission I had in December 2010. I do not think this is another remission....can't be certain of course, but I really think the vitamin regimen is trying to work. I am still tweaking and plan to stick with it. Probably should have a vitamin panel done by my PCP in the next month.

Basically, I've had a HA of varying degrees of severity every day for 18 months. As you can tell from my initial post, I have thrown a lot at it in an effort to beat it. And I will beat it! It has altered my life. But I'm good. Happy and positive most of the time. When it really cranks up, I sometimes get down. It will wear me out sometimes.

Great chatting with you and I do wish you the very best.

V/R
JS

Susan R
Veteran Member


Date Joined Dec 2010
Total Posts : 511
   Posted 6/18/2011 9:19 AM (GMT -6)   
Just as another thought......have you had your Vitamin D level tested? I had mine tested about 2 years ago, and although I am outside most days with my kids, and no sum block, I am deficient. Once I found this out and was able to get my level back into normal, my overall health felt better. Get it checked, if you can!

Good luck idea

JackStraw
Regular Member


Date Joined Jun 2011
Total Posts : 21
   Posted 6/18/2011 4:27 PM (GMT -6)   
Nope. But that's the plan...to have a vitamin panel done. Will do it soon.

Thanks Susan.

JS

notsosicklygirl
Forum Moderator


Date Joined Dec 2008
Total Posts : 16728
   Posted 6/18/2011 8:31 PM (GMT -6)   
Hey Jack -

I am happy you're finding some clues. I am vitamin D deficient as well but I've been taking vitamin D capsules for quite a while and it hasn't really helped me feel better. I am not sure why?? I hope adding vitamin D helps you, it seems to help many people. Someone once told me Calcium can help migraines, it didn't help me but it may be worth a try.

I have a lot of stuffy nose issues too. I went to an ENT and I am nowusing a neti pot, and nasal spray steroid & allergy and I've been clearer than I've been in years. I hope this is a solution.

I hope your improvement continues.
Co-moderator: Ulcerative Colitis
Diagnosed with Pancolitis & Migraines. Battling Extreme Exhaustion | Past Meds: Prednisone + Cortifoam + Asacol (3600) + Canasa + Rowasa + 6mp + Allopurinol
Currently: Asacol (3200mg) + 6mp

JackStraw
Regular Member


Date Joined Jun 2011
Total Posts : 21
   Posted 6/18/2011 8:40 PM (GMT -6)   
My only issue these days is a relentless mother of a headache. But I'm good. Thank you! Wishing you the best.

JackStraw
Regular Member


Date Joined Jun 2011
Total Posts : 21
   Posted 6/19/2011 9:31 AM (GMT -6)   
And yes, I have added calcium citrate which also has magnesium and zinc.

Thanks again.

Annuk
Veteran Member


Date Joined Jan 2006
Total Posts : 1308
   Posted 6/19/2011 12:44 PM (GMT -6)   
Hi Jack,

I have Hemicrania Continua too! I developed this after I had my son over 22 years ago. I was not diagnosed until 2007 being told it was migraine or sinusitis!!!! I have tried many meds, and yes Indo was the only med that worked well but I had a tummy bleed because of it!!

My consultant tried me on Celecoxib (Celebrex)and Etoricoxib but neither did much to help, but I do know some sufferers find relief from either of these, as they are a good substitute for Indo.

After having tried every med in the book I was put forward for ONSI (Occiptal Nerve Stimulator Implant) and had my Operation in December last year - absolutely brilliant and have had a 60% reduction in pain!!!!

Hope this helps, take care

Ann
Co-Moderator of the Migraine/Headache Forum

DX: Hemicrania Continua, Chronic Migraine, IBS, Allergic Rhinitis and Heart Murmur

Meds: Imigran Injections, High Flow Oxygen, Mebeverine, Lansoprazole, Nasonex and Clarityn

JackStraw
Regular Member


Date Joined Jun 2011
Total Posts : 21
   Posted 6/19/2011 8:30 PM (GMT -6)   
Wow Annuk, sorry you've had to suffer for so long. That is great news about the success of your procedure. ONSI is something I have not seriously looked at yet but something I may consider down the road. Thank you for the reply.

Take care,
JS
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