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Cluster Headache Help and Support >> Getting to Know Ya >> New Girl looking for Love http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1384674967 Message started by wsnurse on Nov 17th, 2013 at 2:56am |
Title: New Girl looking for Love Post by wsnurse on 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. :-[ |
Title: Re: New Girl looking for Love Post by Hoppy on 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. |
Title: Re: New Girl looking for Love Post by Bob Johnson on Nov 17th, 2013 at 12:39pm
Print the PDF file, below. These are the current standard meds for Cluster.
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Title: Re: New Girl looking for Love Post by wsnurse on 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.. |
Title: Re: New Girl looking for Love Post by wsnurse on 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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Title: Re: New Girl looking for Love Post by coach_bill on 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 |
Title: Re: New Girl looking for Love Post by Mike NZ on 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. |
Title: Re: New Girl looking for Love Post by wsnurse on 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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Title: Re: New Girl looking for Love Post by Batch on 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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