New CH.com Forum | |
http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl
Cluster Headache Help and Support >> Getting to Know Ya >> Classic Cluster Except Late Onset http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1336954723 Message started by Susie Spouse on May 13th, 2012 at 8:18pm |
Title: Classic Cluster Except Late Onset Post by Susie Spouse on May 13th, 2012 at 8:18pm
My otherwise healthy husband, age 61, began having BAD headaches that woke him up from his usually sound sleep a few weeks ago. While researching dosage of melatonin to try on him (I take it almost nightly for my pain-free insomnia), I saw the term cluster headache which I had heard of but knew nothing about. It only took a little research to see that, except for the late onset, he's classic -pacing the house, pain goes as quickly as it comes, nasal congestion, etc. Found this board that first day as well and started reading! Figured the vitamin/supplements were easiest thing to try first and he's been on that for 2 weeks - but probably needs more D3. HAs started increasing in frequency and after a few sleepless nights for both of us, he finally agreed to see our primary care Dr. last week - she Rxed O2, which was delivered the next day! At 8-10 lpm, even w/ regular nose cannula, O2 aborts his attacks in about 5 minutes. Dr. also sent him for CT scan, lab work, and referred to opthamologist(had not had his eyes checked for over 5 years) who he saw last Friday. She sent for all his tests, including CT, and all is well except for pesky CH! Followup Appt. w/ Dr is this coming week. We asked that they check D levels but think he may as well up the D3 now since the blood work's been done! He's been taking 15 mg melatonin every night. He prefers to take as few heavy-duty drugs as possible -frankly we'd be more open to the shrooms!
Hope I've explained well enough -CH is complicated! Thanks to all!!! |
Title: Re: Classic Cluster Except Late Onset Post by Mike NZ on May 14th, 2012 at 2:47am
Hi Suzie
Welcome to the motherlode of knowledge about CH. If he can abort his CHs in 5 minutes using such a low flow rate and nose canulas, I strongly suspect that he'll be able to abort them even quicker with a higher flow rate and a non-rebreather mask. With the pain of a CH, saving even a few minutes is a whole lot of pain he has avoided. Keep reading and asking questions, you'll soon learn more than most doctors. |
Title: Re: Classic Cluster Except Late Onset Post by Susie Spouse on May 15th, 2012 at 3:44pm
Bob, you are right-on! Got a call that his CRP is elevated (?) so he's seeing a rheumatologist tomorrow for possible temporal arteritis. None of the other symptoms of TA apply- fatigue, weight loss, yada yada - except for losing sleep time, he feels good during the day and is able to keep up w/ our hectic schedule of grand-parenting (6) and gardening! We are very lucky to be retirees! I've already said several times how glad I am neither of us has to get up and go to a job.
I'm thinking of printing out the cluster HA quiz to take to Rheum Dr. Cause these headaches sure act like Clusters! Without O2 they were gone in about an hour as quickly as they came on- wake him up from sound sleep - happen every few hours dusk to dawn- worse pain he's ever felt in 61 years -paces and cusses and moans and prays. (He's usually a stoic-has always had high pain tolerance.) They're on left side - eye, cheek -kleenex needed 1/2 way through. Just went to consult w/ him again on area of pain - pointed to inside corner of eye. Thankfully the O2 has worked every time and cuts the duration to 5-10 minutes but still breaks up sleep time for both of us. Any other suggestions as to communicating w/ Dr? Wondering if a Rheum doc will have knowledge of Clusters. |
Title: Re: Classic Cluster Except Late Onset Post by Susie Spouse on May 15th, 2012 at 8:09pm
I've checked all the links searching for a local head-ache expert -haven't found any so far. We have Medical Univ of SC locally and I can attest to their greatness in many areas- Pediatric Cardiology for one - have a grandchild born w/ severe heart defect who received the BEST care right here in our sometimes backward state. Guess they don't do headaches! Hopefully, between Rheum Doc and GP, if a neurologist is needed we'll be referred to a good one!
By the way, I've spent hours reading here and I really like you guys! |
Title: Re: Classic Cluster Except Late Onset Post by Guiseppi on May 15th, 2012 at 9:31pm |
Title: Re: Classic Cluster Except Late Onset Post by Susie Spouse on May 17th, 2012 at 11:39am
Blood work that sent us to Rheum Doc wasn't there! Doc sent for it and when she saw it was surprised - was not alarming and not indicative of Temporal Arteritis -still apparently sudden onset of HA @ his age(61) is cause enough for biopsy of artery (only way to get Dx) which they are scheduling for tomorrow!
- In the meantime, still pursuing Batch's Vit/Supplement regimen in search of a cure! His Vit D level was 30 last week in spite of being on starting regimen for past 2 -3 weeks. Posting this and more on that thread (Painfree 123 days or whatever it is!) I'm looking for a consult w/ Batch and still not sure how this board works exactly - but I have read a LOT!!!! Thanks so much to All!!! from Sue in South Carolina |
Title: Re: Classic Cluster Except Late Onset Post by Susie Spouse on May 21st, 2012 at 1:10pm
Update- my husband called and cancelled/postponed (?) the biopsy for Temporal Arteritis (TA). Note that even the rheumatologist Dr. said that his headaches didn't fit diagnosis of TA- said they would be around the clock - not so obviously dusk to dawn- which is what he continues having - waking him from sound sleep - severe & centered in the inside corner of left eye. Oxygen relieves them- he goes back to sleep and is awakened by severe pain in an hour or 2. This goes on all night until dawn finally breaks. Entering Week 7 of this - in spite of the fact that this is exhausting, he feels fine during the day.
SED rate over 50 is marker for TA biopsy - His is normal @ 10 yet they are still pushing for this biopsy. He has agreed to go back to the GP - appt this afternoon. His D3 level was at the lowest end of normal @ 35 so yesterday he"loaded" on 50,000 IU D3 and will take 20,000 IU along w/ Calcium citrate and other supplements. |
Title: Re: Classic Cluster Except Late Onset Post by Batch on May 21st, 2012 at 3:21pm
Hey Susie,
Your husband made a wise decision upping his vitamin D3 dose... The "Normal" range of 25(OH)D serum concentration for CH'ers on this regimen to remain pain free of their CH is 60 to 110 ng/mL... a.k.a. the "Green Zone." Assuming a "normal" 25(OH)D response to vitamin D3, your husband should reach the lower threshold of the "Green Zone" in a little under two weeks after starting a vitamin D3 dose of 20,000 IU/day plus the weekly 50,000 IU loading dose. Have you started this regimen? Take care and please keep us posted... V/R, Batch |
Title: Re: Classic Cluster Except Late Onset Post by Susie Spouse on May 21st, 2012 at 7:07pm
Yeah!! GP agreed biopsy for temporal arteritis not nssy - not indicated by his blood work nor his symptoms.
Batch, we are trying to follow all your instructions - both of us! Want to feel as energetic as you and your beautiful bride! We hope we can celebrate 40 years of marriage in early June pain-free! Thank you All for all the cluster HA info I have received at this site!!! |
New CH.com Forum » Powered by YaBB 2.4! YaBB © 2000-2009. All Rights Reserved. |