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New Member Introduction (Read 1722 times)
Payg
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New Member Introduction
May 11th, 2017 at 8:08pm
 
Hi everyone!  Just wanted to introduce myself & tell my story.  I'm a 47 y/o female from NC who has chronic CH.  Here's my CH MO:  Starts between 2 a.m. - 4 a.m., usually on left side (but goes right once in a while just to mess with me), excruciating eye pain (remove the contacts quickly), excessive tearing and nose running, excessive eye swelling (even my top lip at times), teeth hurt, face tingles/gets numb, cannot lay down AT ALL, pain on the whole side of head down into neck.  No swearing or cursing, but I have cried on more than one occasion.  I think the highest I've ever got is an 8 maybe a 9(?) on the pain scale.  It usually lasts for up to an hour, but occasionally longer.  It is usually completely over, shadows and all, within 24 hrs.  I have never been episodic.  Once IT got me, IT decided to move in and set up camp. 

My first CH was in Jan 2016 (46 y/o at the time) and after a few months of these horrible things and a lot of internet research, I went to my regularly scheduled eye dr appt.  I told my eye dr what was going on, told him that I thought it was CH (even showed him a printout and pictures), he did a FULL workup and he agreed with my suspicions.  He called my PCP that day, who then made a referral for a neurologist.  After an MRI and Lumbar Puncture, we had an official diagnosis in August 2016 of CH and MS.  Oh well...not the best news but I'm hanging in there. 

Just wanted to say thanks for all the info I've gleaned from this site.  It has been very useful when talking to my Neuro who, BTW, is EXCELLENT!  I started out with just O2 but it didn't abort well enough.  My neuro put me on 80 mgs 3x/day of Verapamil and we have upped the dosage to 120 mgs 3x/day.  With the meds and a higher flow regulator and NRB mask it has made a world of difference.  As an added bonus, my BP is back to normal (115/75) and I've learned how to sleep sitting up (now that's talent!).  Going back to my PCP in June for checkup and bloodwork and to my neuro in July for a checkup.  Oh yeah, I've recently started the D3 at 5000 IU/day.  Turns out that D3 is recommended for MS too!  As far as the MS, I haven't been able to find any solid links between MS & CH specifically, but I do wonder if they are connected somehow.  My last MRI showed no progression and I am not on any MS meds at present. 

Honestly, I consider myself VERY blessed especially after reading so many of your stories and how long it took for you to get diagnosed.  Right now, life is manageable and I'm pleased with my outcomes so far.  I might have a very mild CH once every 1-2 weeks, but now I know what to do thanks to all of you guys.  Sorry if I've been a little long winded but that's sorta hereditary.  Plus, its kinda nice telling people that truly understand.  Please feel free to ask me any questions or make any recommendations that could help me.  Best wishes for PF days to all!

Payg Wink
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« Last Edit: May 11th, 2017 at 8:27pm by Payg »  
 
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Mike NZ
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Oxygen rocks! D3 too!


Posts: 3785
Auckland, New Zealand
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Re: New Member Introduction
Reply #1 - May 14th, 2017 at 6:52pm
 
Hi and welcome Payg

It seems like you're doing pretty well with your CH, with the confirmed diagnosis and a preventive that is working well for you.

Have you got any abortives? You didn't mention either oxygen or imitrex injections / nasal spray.

MS and CH don't seem to be related, but given how comparatively rare they both are I doubt there has been any research done to see if there is a link or not. However I don't remember anyone posting here over the last few years with CH and MS.

I've also heard of D3 being used with MS with doses quite a lot higher than we're using for CH, so I'd read up what you can and with the much higher doses it will be even more important to get blood tests done to monitor levels.

Keep reading and asking all the questions you have.
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Payg
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Gender: female
Re: New Member Introduction
Reply #2 - May 15th, 2017 at 7:40pm
 
Hi Mike NZ, 
My Neuro started me out with 02 at 4 LPM and we've increased it to 10 LPM and it usually takes care of it.  I can go higher on the flow if needed and I have a NRB mask.  I'm also on Verapamil and it worked wonders for about a month and then the CHs came back with a vengeance so we upped that as well.  To be honest, I'm pleased that I only have a CH about once every 7-10 days.  A sight better than what it used to be.  My neuro has suggested the injections and the nasal spray, but I'm not ready to go that route yet.  If the O2 and Verapmil stop being as effective, I'll take those options into consideration.  I'm a very tall, thin person with naturally low BP (so we monitor my BP often) and I'm not sure how I'll react to those meds as well as being a bit chicken when it comes to needles.  Luckily, my neuro is willing to work with me at my comfort level.

I've done as much research as my non-medical training will allow and there have been a few papers written on a possible link between MS and CH, but no definitive answers/conclusions.  Although, I find it interesting that CH was the 1st manifestation of MS in a number of patients.  As for the D3, I started myself out with my current dosage and will have blood work next month to see where I stand.  I have to be careful with vitamins due to some of the issues they can cause.  But that being said, my Neuro did recommend the D3.

I was thinking about this the other day...If it had not been for my eye dr. I would not have received my diagnosis so quickly.  Eye doctors can tell so much about your health and can identify many health issues before a PCP can.  I would assume that many eye doctors have received complaints from patients about having severe, one-sided eye pain and may be more familiar with CH than we realize.  Maybe we should rethink that annual eye exam.  To me, it's a valid idea.

And on another note, I'm somewhat surprised (and a bit frustrated) at the issues people seem to have getting diagnosed.  With all the medical info available via internet today, why are doctors having such a hard time accepting that it could be CH and prescribing the best treatments?  Are the doctors just not that informed on CH and headaches in general--or should we, as patients, start doing their work for them and "pre-diagnosing" ourselves?  I, personally, did my own research, based on my symptoms, and presented that evidence to my doctor along with treatment options.  I know many members here didn't have the luxury that I've been afforded.  Maybe I'm just lucky, maybe God was looking out for me or maybe I'm very good at advocating for myself.  Regardless, it should not be such a hassle for folks when they go to the doctor.  OK, rant over. Roll Eyes

Well, Mike NZ, thanks for listening.  Please weigh in with any suggestions or course of action that might be of benefit to me.  I hope you are well and PF!

Payg
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Mike NZ
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Oxygen rocks! D3 too!


Posts: 3785
Auckland, New Zealand
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Re: New Member Introduction
Reply #3 - May 19th, 2017 at 12:40am
 
Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register - that has a load of info on using O2.

4LPM is a very low flow rate, with 10 LPM still being low. How long does it take you to abort at that flow rate?

Higher flow rates normally result in quicker CH aborts, with 25 LPM enabling many to abort a CH in under 5 minutes.

For verapamil, 360-480mg a day will work for many of us, but some need to go up to 1000mg, so you may need a higher dose, but do work with your doctor on changing doses and remember it takes 10 days for a dose change to become effective, so don't change doses quicker.

I'd still look at having the injections / nasal spray as you can't have your O2 with you everywhere. They are pretty easy to use and there is no real reason to avoid having them (unless your medical history prevents it).

As to the difficulty of being diagnosed, a lot is down to CH being comparatively rare. In medical school about a day in total is devoted to all headaches and there are tens of different types, with most of the training being around tension and migraines. So a lot of doctors just don't have the knowledge and many never see someone with CH.
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