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Just got diagnosed, very down (Read 2462 times)

ajh92

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Just got diagnosed, very down
Aug 21^st, 2015 at 7:05pm

Hey all, Im 22 years old and just got diagnosed with cluster headaches. It started about 2 weeks ago with some "brain zaps" then moved onto me waking up feeling like i was dying and someone stabbing my right eye. It progressively got worse would get it different times of the day and it peaked so bad that I had to have my mom take me to the ER because I just couldnt take it anymore. They gave me zofran and 2 other drugs IV ( im sorry I dont know the names) which helped the pain go away.
I went to the neurologist today and he said they are cluster headaches, he gave me a steroid to take and ordered an mri. The pain of these headaches is intolerable, the only medicine I have been on is Xanax for my terrible anxiety and heavy use of marijuana for my serious OCD (this is the only thing that works for me, otherwise I have to have certain images in my head crossing doors, closing the light on and off 55 times before I got to bed etc) The dr said its odd to see someone so young to have clusters. I now no longer smoke marijuana as it only made things better for a little bit then would come back worse ten fold, so now I must deal with my OCD again Embarrassed

I am now very depressed on this I am petrified this will be a constant thing and I can honestly say if it does, it is not a life I want to live. I was reading about the d3 regimen and it looks like something I will try

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Mike NZ

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Oxygen rocks! D3 too!

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Auckland, New Zealand
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Re: Just got diagnosed, very down
Reply #1 - Aug 22^nd, 2015 at 2:11am

Hi and welcome to somewhere where everyone understands exactly what it is like to have CH as we all have it or support someone with it.

It sounds like you've a provisional diagnosis of CH, which will be pending the results of the MRI which is to look for other potential causes of the same symptoms. However the steroid (probably prednisione) is there to act as a short term preventive to cut down how many CHs you get for now.

Once confirmed as CH, they should get you on a preventive, probably verapamil (or lithium or topamax) which you can take long term to cut down how many CH you get. They should also get you some abortives to kill off any CH you get, probably oxygen and injectable imitrex.

Oxygen info is at - Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

Marijuana is not normally something that works with CH as it acts as a vasodilator, which is not what you need (most CH medications do the opposite).

The D3 plan is a good idea as it has helped many people be CH pain free for many, some (including myself) for several years.

Keep reading and ask all the questions you can think of.

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Batch

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Control The Beast With
O2 & D3 You Must

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Bremerton, WA
Gender: male

Re: Just got diagnosed, very down
Reply #2 - Aug 22^nd, 2015 at 2:34am

Hey AHJ,

Welcome to CH.com. You've come to the right place. We know what you're going through and the good news is it doesn't need to be that way.

You were likely given a prednisone taper. It should be effective in preventing your CH but only for the duration of the taper... usually ten days to two weeks. After that the prednisone side effects become onerous.

During the pred taper, most neurologists who are familiar with the standards of care in treating patients with CH, will prescribe verapamil as a longer term CH preventative.

When you see the doctor who prescribed your CH medications, ask for a prescription for home oxygen therapy at 15 liters/minute with a non-rebreathing mask. Oxygen therapy can be a very effective and safe CH abortive if used properly and started early at the first sign of an approaching CH attack.

You also need to ask for the 25(OH)D lab test. 25(OH)D is the serum level metabolite of vitamin D3 that's used to measure its status. The normal reference range for serum 25(OH)D is 30 to 100 ng/mL.

Unfortunately too many physicians will interpret a 25(OH)D lab result of 31 ng/mL as normal... nothing could be farther from the truth with cluster headache... You need to keep your 25(OH)D serum concentration up around 80 ng/mL to prevent your CH. That will require a vitamin D3 intake of 10,000 IU/day plus the vitamin D3 cofactors and Omega-3 fish oil. This is the anti-inflammatory regimen and to be effective in preventing your CH, you need to take all the listed supplements.

If there's going to be any delay in obtaining the 25(OH)D lab test or you get push-back from your neurologist, start the anti-inflammatory regimen now. The odds are you're vitamin D3 deficient and that deficiency is contributing to your CH.

At 30 to 50 cents a day, depending on where you buy your supplements, the anti-inflammatory regimen is the most cost effective and safest CH preventative available to us. You can read all about it at the following links:

Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

.

Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

This regimen should help calm your anxiety attacks to the point you can drop the Xanax and it may even help with your OCD. Check your PM inbox, I've sent you some additional information.

Take care and please keep us posted.

V/R, Batch

« Last Edit: Aug 22^nd, 2015 at 2:37am by Batch »

You love lots of things if you live around them. But there isn't any woman and there isn't any horse, that’s as lovely as a great airplane. If it's a beautiful fighter, your heart will be ever there

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Guiseppi CH.com Moderator CH.com Alumnus Offline San Diego to Florida 05-16-2011 Posts: 12063 SAN DIEGO, CALIFORNIA USA Gender:	Re: Just got diagnosed, very down Reply #3 - Aug 22^nd, 2015 at 9:03pm Pay close attention to Batch's post, I'm 5 years pain free after over 30 years of episodic CH, it works for a large percentage of those who try it! Joe
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BarbaraD CH.com Alumnus Offline Hugs to ya Posts: 8333 Douglasville, TX Gender:	Re: Just got diagnosed, very down Reply #4 - Aug 23^rd, 2015 at 11:26am I'm with Joe... Pay attention to Batch.. After being chronic since 97, I've been PF for almost two years since "listening" to him about the D3. And do it like he says... keep us informed.
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ajh92

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Re: Just got diagnosed, very down
Reply #5 - Sep 16^th, 2015 at 7:17pm

         Hey all, I appreciate all the tips and help but I ended not having cluster headaches and was misdiagnosed. It took over a month for my insurance to approve my mri, when I went to get it done, right as I got home I received a panicked and frightened phone call from my doctor who told me to drop everything and go to the ER right away, as I had a fungal sphenoid sinus infection which the ER missed on my ct scan when I went. There was so much bone erosion that the doctor said
      I had a max of 2 weeks to live as it was close to my brain and my vision was in danger of being lost.
The headaches and brain zaps were the infection pressing against my optical nerves and a certain lobe of my brain. I had emergency surgery to have it removed and as soon a I woke up the terrible headaches and pain were gone thankfully. The surgeon was livid and wanted to know how they could miss on the ct scan and in so many words said somebody had there thumbs up there ass.The infection had been there for many years and was unsure on how it got there, although he suspected that I got it from the last house I lived in had black mold in the basement which I spent much time in my teens down there working out. I am feeling much better now although my left peripheral vision is a bit fuzzy now my ENT is hopeful that its returning as its just post op sensitivity.
               Its insane how much incompetence there is in healthcare and needless to say I am looking into the legal options I have as if I would have waited anymore I would have dropped dead or god forbid lost my vision due to someone not doing their job.

« Last Edit: Sep 16^th, 2015 at 7:24pm by ajh92 »

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Hoppy

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LAUGHTER IS THE BEST MEDICINE

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Perth WA
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Re: Just got diagnosed, very down
Reply #6 - Sep 16^th, 2015 at 8:07pm

ajh92 wrote, Hey all, I appreciate all the tips and help but I ended not having cluster headaches and was misdiagnosed. It took over a month for my insurance to approve my mri, when I went to get it done, right as I got home I received a panicked and frightened phone call from my doctor who told me to drop everything and go to the ER right away, as I had a fungal sphenoid sinus infection which the ER missed on my ct scan when I went. There was so much bone erosion that the doctor said
I had a max of 2 weeks to live as it was close to my brain and my vision was in danger of being lost.
The headaches and brain zaps were the infection pressing against my optical nerves and a certain lobe of my brain. I had emergency surgery to have it removed and as soon a I woke up the terrible headaches and pain were gone thankfully. The surgeon was livid and wanted to know how they could miss on the ct scan and in so many words said somebody had there thumbs up there ass.The infection had been there for many years and was unsure on how it got there, although he suspected that I got it from the last house I lived in had black mold in the basement which I spent much time in my teens down there working out. I am feeling much better now although my left peripheral vision is a bit fuzzy now my ENT is hopeful that its returning as its just post op sensitivity.
Its insane how much incompetence there is in healthcare and needless to say I am looking into the legal options I have as if I would have waited anymore I would have dropped dead or god forbid lost my vision due to someone not doing their job.

Thanq for posting this, It's why we always recommend to see a Headache Specialist to get a proper diagnosis as the majority of neurologist's aren't up to speed when it comes down to CH's, and getting it right.

Cheers, Hoppy.

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maz CH.com Hall of Famer Offline I Love CH.com! Posts: 1071 Hampshire, England Gender:	Re: Just got diagnosed, very down Reply #7 - Sep 17^th, 2015 at 10:02am ajh, I'm so glad for you that the correct diagnosis was found in time, before anything really bad happened to you. I'm also really glad you don't have CH. Thanks for letting us know. Maz.
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