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New Girl looking for Love (Read 2538 times)
wsnurse
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New Girl looking for Love
Nov 17th, 2013 at 2:56am
 
I am a 45 year old single mom and Nurse who has been recently diagnosed with CH. Don't know how it was missed for so long. My dad suffered for 20 years and has been clear for 5. Starting 2010 I started with a few " worst headaches of my life." I was treated for hormones, thyroid, food allergies, dinus allergies depression...STRESS!!!

So What I did I do became my own Private I. I went back through medical records until I saw patterns. seasonal aug-dec 2009, 2010, etc .

This year was different. They became cyclic clock work 3:15 am, 6:27am, 11am, 1:17pm, 3:55pm, 5:37pm, 8:30pm daily. Left side, temple, hot poker...... I call it light switch pain. Wham it's here and I'm disfunctional. Going on 3 months straight. 2nd Neurologist, 3rd primary care doctor, naturopath. Hard to get a doctor to Listen!!

Topoax 50mg BID x 8 weeks-- No relief
Prednisone 60mg x7 days then taper present minimal relief
O2 10 ( 20 times a day) takes the edge off
Magnesium Salt Baths and Oral Supplements
Imitrex injection or oral no relief
Tordol No relief
CBD Tincture minimal relief (stopped using)
Vitamin D3 10, 000
Blu Max Light

Cuurently getting Meyers Cocktail from Natural PATH
WORKS IMMEDIATELY TO ABORT CH but last for only 4-8 hours. It is IV magnesium, Vitamin C, B12-B6, procaine in 250ml bag os sodium chloride. Love it but it's $100.00 shot.
If I could afford it I would do it daily.

I don't fit the typical night pattern.
Have not broken the cluster. Still going 4-8 CH a day shadowing in between. Life, job and kids are a disaster...
Cry a lot not sure from the pain, tired and sad...Missing the old fun loving girl. Embarrassed
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Hoppy
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Perth WA
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Re: New Girl looking for Love
Reply #1 - Nov 17th, 2013 at 5:37am
 
Hi wsnurse,
Sorry to hear your having such a rough time. Maybe give
this a try it has an 80% success rate of becoming pain
free. After taking it for 1mth get a 25 (oh) D blood test.
you need serum concentration level of around 80ng/ml
to get the best results.

                   20,000iu Vitamin D3/day.
                   500mg/day Magnesium citrate.
                   400mg/day Calcium citrate.
                   1 Fish oil concentrate EPA 400mg/ DHA 200mg.
                   1/day Centrum multi vitamin.
                   Take them all with your main meal of the day.

                   Good Luck, Hoppy.
                  




                  
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« Last Edit: Nov 17th, 2013 at 7:09am by Hoppy »  
 
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Guiseppi
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Re: New Girl looking for Love
Reply #2 - Nov 17th, 2013 at 9:13am
 
I'm assuming the 02 was at 10 LPM? Most don't start getting relief until 15 LPM, and many have to go to 25 LPM or higher to get relief. 02 is used as an abortive treatment for CH, as soon as you feel an attack starting, fire off the 02. The idea is to get pure, 100% 02 to the lungs at a rate to support hyper ventilation. Best accomplished using a high flow, 15 LPM minimum, preferably higher, and a Non Re Breather Mask. That's critical as re breathers and nasal cannulas allow way too much outside air in diluting the concentration and foiling the abort. Here's a link with more info on 02 therapy:

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Have you tried Verapamil as a prevent yet? Still the most popular first line prevent:

A widely used protocol. Your doc will recognize the source and author:

Headache. 2004 Nov;44(10):1013-8.   


Individualizing treatment with verapamil for cluster headache patients.

Blau JN, Engel HO.


    Background.-Verapamil is currently the best available prophylactic drug for patients experiencing cluster headaches (CHs). Published papers usually state 240 to 480 mg taken in three divided doses give good results, ranging from 50% to 80%; others mention higher doses-720, even 1200 mg per day. In clinical practice we found we needed to adapt dosage to individual's time of attacks, in particular giving higher doses before going to bed to suppress severe nocturnal episodes. A few only required 120 mg daily. We therefore evolved a scheme for steady and progressive drug increase until satisfactory control had been achieved. Objective.-To find the minimum dose of verapamil required to prevent episodic and chronic cluster headaches by supervising each individual and adjusting the dosage accordingly. Methods.-Consecutive patients with episodic or chronic CH (satisfying International Headache Society (IHS) criteria) were started on verapamil 40 mg in the morning, 80 mg early afternoon, and 80 mg before going to bed. Patients kept a diary of all attacks, recording times of onset, duration, and severity. They were advised, verbally and in writing, to add 40 mg verapamil on alternate days, depending on their attack timing: with nocturnal episodes the first increase was the evening dose and next the afternoon one; when attacks occurred on or soon after waking, we advised setting an alarm clock 2 hours before the usual waking time and then taking the medication. Patients were followed-up at weekly intervals until attacks were controlled. They were also reviewed when a cluster period had ended, and advised to continue on the same dose for a further 2 weeks before starting systematic reduction. Chronic cluster patients were reviewed as often as necessary. Results.-Seventy consecutive patients, 52 with episodic CH during cluster periods and 18 with chronic CH, were all treated with verapamil as above. Complete relief from headaches was obtained in 49 (94%) of 52 with episodic, and 10 (55%) of 18 with chronic CH; the majority needed 200 to 480 mg, but 9 in the episodic, and 3 in the chronic group, needed 520 to 960 mg for control. Ten, 2 in the episodic and 8 in the chronic group, with incomplete relief, required additional therapy-lithium, sumatriptan, or sodium valproate. One patient withdrew because verapamil made her too tired, another developed Stevens-Johnson syndrome, and the drug was withdrawn. Conclusions.-Providing the dosage for each individual is adequate, preventing CH with verapamil is highly effective, taken three (occasionally with higher doses, four) times a day. In the majority (94%) with episodic CH steady dose increase under supervision, totally suppressed attacks. However in the chronic variety only 55% were completely relieved, 69% men, but only 20% women. In both groups, for those with partial attack suppression, additional prophylactic drugs or acute treatment was necessary. (Headache 2004;44:1013-1018).

=======================================
SLOW-RELEASE VERAPAMIL

Dr. Sheftell applauded the protocol for verapamil used by Dr. Goadsby and colleagues, which entailed use of short-acting verapamil in increments of 80 mg. “This method was suggested by Lee Kudrow, MD, 20 years ago as an alternative to slow-release verapamil,” Dr. Sheftell noted.

“I would agree with using short-acting verapamil, rather than the sustained-release formulation, in cluster headache,” he said. “I prefer the short-acting formulation with regard to ability to titrate more accurately and safely. My clinical experience anecdotally demonstrates improved responses when patients are switched from sustained-release verapamil to short-acting verapamil.”

Dr. Goadsby agreed that his clinical experience was similar. “There are no well-controlled, placebo-controlled, dose-ranging studies to direct treatment. This is one of those areas where clinicians who treat cluster headache have to combine what modicum of evidence is available with their own clinical experience,” Dr. Sheftell commented


Sounds like you're having a rough go, hoping you can get some pain free time soon.

Joe
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"Somebody had to say it" is usually a piss poor excuse to be mean.
 
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Bob Johnson
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Re: New Girl looking for Love
Reply #3 - Nov 17th, 2013 at 12:39pm
 
Print the PDF file, below. These are the current standard meds for Cluster.
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Bob Johnson
 
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wsnurse
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Re: New Girl looking for Love
Reply #4 - Nov 20th, 2013 at 2:59pm
 
Thank You
Neurologist started me on Verapamil 120mg bin on two days he just increased to 240mg. How long does it take?

Yes bin using the o2 at 10L. Will increase to 15L My biggest challenge is keeping enough O2 in the house the company only delivers 1 week and I keep trying to explain I can go through 8 e tanks in a day.. The also keep breaking the wrong type of mask and or nasal canual so frustrating..
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Guiseppi
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Re: New Girl looking for Love
Reply #5 - Nov 20th, 2013 at 3:10pm
 
It can take several days for the verapamil to start kicking in. You're still at the lower end of the dosing scale with some going as high as 960 a day to get relief. Some even have to combine lithium with the verapamil, we call it the "chronic cocktail".

Follow this link to the clusterhead store......no I don't get a kickback for referring you! Wink They have a cluster 02 kit for $22 that's the Cadillac non re breather set up. A worthwhile investment:

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For your home set up, see if you have the option of a larger tank, an M tank is like 6 E-tanks an H Tank the equivalent of about 12 E's. Not portable but nice to have in the corner of the living room. Hoping you catch some relief soon.

Joe
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"Somebody had to say it" is usually a piss poor excuse to be mean.
 
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wsnurse
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Re: New Girl looking for Love
Reply #6 - Nov 20th, 2013 at 7:18pm
 
Thanks Mask has been ordered.  Starting to get a head cold, low grade fever, sore throat etc. Terrible timing being in a full blown cluster fo r 5 days. Thanks kids. I'm sure this is not going to make things an easier. Any suggestions for the neebie.
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coach_bill
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Re: New Girl looking for Love
Reply #7 - Nov 20th, 2013 at 8:30pm
 
Hello,

I know your in a tough spot, and being in a very important job has to make it even tougher. But have you considered looking at the clusterbusters site? Being in the medical field, im sure you know that everything comes from somewhere right? every pill the Doctor gives someone is made of something right? A plant... a fish, some jungle tree bark, a root, a berry, ground shark bone... And so on. It cant be that hard to place a seed in that category. Take a look.

Best,
Coach Bill
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boy i cant wait till it's my turn to give him a headache. paybacks a bitch
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Mike NZ
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Oxygen rocks! D3 too!


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Re: New Girl looking for Love
Reply #8 - Nov 21st, 2013 at 1:07am
 
It typically takes 7-10 days for verapamil to become effective at a given dose level. So don't change the dose before it has had chance to become effective.

The dose of 240mg is pretty low, with most people getting relief at 360-480mg a day but some go to over 1000mg a day.

Verapamil can impact the PR interval on an ECG, so it is important to have an ECG periodically when on verapamil. If the PR interval is affected, stopping the verapamil will normally correct it.

With oxygen, don't get frustrated by people giving you the wrong mask or flow rate. I got my own regulator and mask so I can use it to best effect.
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wsnurse
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Re: New Girl looking for Love
Reply #9 - Nov 25th, 2013 at 2:06am
 
Thank you for the support. I am trying to be patient on the verapamil 240mg. Got the mask from website. it's kind oh hard to get deep breaths because bag has to feel up before inhalation. is this normal? Makes me panic.
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Batch
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Re: New Girl looking for Love
Reply #10 - Nov 25th, 2013 at 10:08am
 
WS,

Your problem is all to common when the oxygen flow rate is too low.  An oxygen flow rate of 7 to 10 liters/minute is clearly insufficient.  Even 15 liters/minute may be insufficient if there's any physical activity... i.e., the cluster two-step or rocking...

This is also a major reason why too many CH'ers say oxygen therapy doesn't work...  and they're correct!  The low oxygen flow rate doesn't support adequate lung ventilation...  This allows CO2 build up and that triggers anxiety and panic attacks.

Call your neurologist, tell him about your problem and have him rewrite your Rx for a flow rate of 25 liter/minute.  After all, you are a medical professional so know whereof you speak.

If your neurologist finks out, go on the Internet and buy a 25 liter/minute regulator that fits the oxygen cylinders you get from your home oxygen provider.

Take care and please keep us posted.

V/R, Batch
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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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