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Cluster Headache Help and Support >> Medications, Treatments, Therapies >> Supporter with questions http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1515385613 Message started by Cupcakesprkls on Jan 7th, 2018 at 11:26pm |
Title: Supporter with questions Post by Cupcakesprkls on Jan 7th, 2018 at 11:26pm
Hello everyone.
My husband suffers from ch for 4 yrs. He is already doing the D3 regime with the benadryl. Been on it almost a week now with no change. This year is by far the worst so far. I have a couple of questions so that I can better help him. 1. If he has a kip 8 - 9 that just won't stop and imitrex pills doesn't help, should he be taken to E.R.? 2. Speaking of imitrex pills, The box says not to take more than 2 in 24 hours, and the doctor wrote the script for " 1 pill a day as needed for headache". They are the 100mg tablet. And he only wrote it for 10 pills with 1 refill. Pharmacy won't refill it for 2 weeks. Filled script afternoon of jan 5. He has 8 - 10 attacks a day and takes an imitrex for most of them. How bad is it to take around 7 - 8 imitrex a day? Sorry for rambling / long winded questions. I have read through alot of the boards here looking for just anything that can help him, or help me support him better. He is in so much pain, it kills me to know that there isn't anything I can do to make it stop. And his doctor is no help, treating it like it's a migraine. Which pisses me off to no end. I bet he would change his tone if he had to endure even 1 of these. He will also not prescribe oxygen, saying o2 is only for patients with respiratory problems. I really just want to scream at the doctor. It is cruel and unusual punishment to make him have to "power through" this kind of pain. Sorry rambling again. Just so frustrated. Thanks |
Title: Re: Supporter with questions Post by Batch on Jan 8th, 2018 at 3:20am
Hey Cupcakesprkls,
I know what you and your husband are going through with 8 to 10 CH attacks a day and as the guy who developed the anti-inflammatory regimen in December of 2010, I'm here to help, but I do need some answers: Did your husband start this regimen with the 12-Day vitamin D3 loading schedule at 50,000 IU/day? If not he can take 50,000 IU/day for another 6 to 7 days then drop back to an initial maintenance dose of 10,000 IU/day. If he's a chronic CHer, he can continue the 50,000 IU/day loading doses for another 8 to 10 days. If he did start the accelerated vitamin D3 loading schedule, relief could be a day or two away. It's also possible your husband may have vitamin D3 absorption issues so have him pop at least 25,000 IU of vitamin D3 softgels between his back teeth then swirl the contents under his tongue without swallowing until the softgels dissolve completely. He can do this twice a day, particularly when he senses a CH approaching, Is he taking the Omega-3 fish oil and ALL the vitamin D3 cofactors listed in this regimen? How much Benadryl (Diphenhydramine HCL) is your husband taking? 25 mg every 4 hours throughout the day and at bedtime should be sufficient. Many CHers have found Children's Benadryl Liquid Allergy medicine is just as effective taking 12.5 mg (5 mL in the measuring cap) every four hours. Have him swirl this liquid under his tongue for 3 to 5 minutes without swallowing. This sublingual method gets the Diphenydramine directly into the bloodstream a lot faster through the membranes under the tongue than swallowing. Did his neurologist write an Rx for oxygen therapy? If not, call his office and have him phone in the script to the nearest home oxygen supplier in your area. The Rx should be written as follows: "Oxygen therapy at a flow rate of 15 liters/minute with non-rebreathing mask for Cluster Headache. Use up to 12 times a day for 20 minutes or until the cluster headache abort." If the Rx is not written this way, the home oxygen therapy people will assume the Rx is needed to treat COPD and blow you off... Check the strength of the vitamin D3 soft gels to make sure they are at least 5,000 IU. What other medications is your husband taking? Does he have other medical conditions? He also needs to drink 2.5 liters of water a day. Have him check the color of his urine... If it's yellow to dark yellow, he's dehydrated and needs more water. If the urine is a pale straw color or nearly clear, he's drinking enough water. When he senses an attack approaching, have him drink a glass of ice water (with lots of ice) through a straw. The goal here is a mini-brain freeze that cools the sphenopalatine ganglia in the back of the nasal passage. This cooling effect helps abort CH as it triggers vasoconstriction. Placing an ice cube wrapped in a wet paper towel on top of the head just off center on the hit side on a line in front of the ear. There's usually a sore spot in that area. Place the ice cube there. This tricks the body into thinking hypothermia is coming and this triggers vasoconstriction throughout the periphery including the brain in order to keep the core body temperature in the safe range. Regarding the imitrex and going to the ER. Most neurologist will say 200 mg/day is the maximum dose. The problem with imitrex tablets is they take upwards of 30 to 45 minutes to start taking effect. Imitrex nasal spray works a lot faster in aborting CH in as little as 10 to 15 minutes. Have your husband ask for an Rx for the sumatriptan succinate nasal spray. What you can do in the mean time is pick up a pill splitter and cut the 100 mg tablets into four 25 mg quarters. That way he can take 25 mg of imitrex up to 8 times a day... Going to the ER is always an option and depending on the ER staff's experience in treating patients with CH, it can help. Unfortunately CH is an orphan disorder so most physicians have never seen a patient with CH let alone treat one presenting with an active attack. The best indication the ER staff knows their stuff is they'll start your husband on oxygen therapy at a flow rate of 15 liters/minute. if they don't offer oxygen therapy as a first or second choice abortive... I would be skeptical... Some other things to try that can help: Pick up some probiotic capsules and take as directed on the label until the bottle is gone. Pick up some 1000 mg vitamin C tablets and take one tablet every 4 hours throughout the day and at bed time. Pick up some Turmeric (Curcumin). 1000 mg/day should help. Drink a half glass (4 ounces) of baking soda tonic 3 to 4 times a day. You make it with a half teaspoon of good old Arm & Hammer Baking Soda in 4 ounces of water. The directions are on the box. The baking soda tonic helps elevate systemic pH making it more alkaline. This helps reduce the neurogenic inflammation associated with a CH attack. Diet can play a big role in CH... No sugar of any kind and only one serving of fresh fruit a day. No high carbohydrate starches (That includes no bread, pasta, wheat products etc.) No corn or grain cooking oils or margarine. EVOO, organic butter, avocado oil and coconut oil are OK. Eat free range organic chicken and eggs, wild caught fish (salmon, halibut and cod), grass fed beef, NON-GMO green and yellow veggies. Almonds make a good healthy snack. The above should help. Please keep me posted. V/R, Batch |
Title: Re: Supporter with questions Post by Cupcakesprkls on Jan 8th, 2018 at 12:17pm
Hi Batch and thank you for the reply. He has been on the d3 for 6 days. He is on the 50,000 ui right now. I have been having him do the under tongue method of half the d3 since he started. Yes he is on the omega 3 fish oil already, he takes 3600 ui daily. He is taking all the cofactors as well. He is taking 25 mg of benadryl every 4 hours. First fee days of regime he was using the kids liquid version. He also is taking 1000 mg of vitamin c every 4 hours as well.
He also has ulcerative colitis, but takes no meds for it. And has 3 herniated discs in his back, with no meds for it. He is the type where he would rather just "power through" things instead of seeing the doctor. Only went to doctor for ch's due to the level of pain involved. Due to the fact that sleeping almost always triggers at least a kip 7, he wont sleep. I can tell he is just exhausted. His neurologist saw him once, wrote a script for relpax, and sent him back to his pcp, saying the pcp will be the one that will handle any treatment from then on. None of the doctors have written a script for o2. Had to have the pcp change the relpax to something that wasn't so exspensive as relpax is like $400 per month. So that's when he started the imitrex. Which the pcp will only give him 10 pills per month. Which is ridiculous, as he goes through them in 3 days ( that is if he splits them in half). To give you a better picture of his pcp, he once went in to get antibiotics for an infection on his foot, and the doctor told him "Why should I give you anything when you are a smoker" and walked out. I was just floored by it. Side note, hubby has quite smoking. As for diet, with the pain and lack of sleep can't really get him to eat much of anything besides a cheese stick or protein bar. And that's only when he takes a pill so that it will get his stomache to start breaking down the meds faster so they start working faster. I found that there is a pain management clinic in our area and am trying to get him in to see them. Which can be difficult as most of the time it takes any doctor at least a week to get you in. That's a long time when dealing with ch's. As for the emergency room, we live in a small town so the odds of them being familiar with clusters is pretty slim. It's just heartbreaking to see him like this, I desperately just want a doctor to help him. Saturday night he was hit with 3 bad ones (kip 8 - 9) in a row, about 2 hrs apart, and our 2 oldest (23 and 16) heard him and came to check in on him. It was only the 2nd time the 23yr had seen it and the first for our 16yr. And none of us could do anything for him. I think that answer all the questions. Kinda hard to keep track when doing this from the mobile. Thanks again Batch. |
Title: Re: Supporter with questions Post by Batch on Jan 8th, 2018 at 4:33pm
Hey Cupcakesprkls,
Thank you for the detailed response to my questions. You and your husband are doing all the right things so I expect it's just a matter of time at this point before he starts responding. Did your husband happen to get the 25(OH)D lab test before starting this regimen? I also forgot to ask his age... I'm 73 and I'm still a chronic CHer... All I have to do is stop taking vitamin D3 and I get slammed. Depending on my serum 25(OH)D concentration and allergy status, I can go up to six weeks or as little as two days before getting hit. When we're vitamin D3 deficient and start taking vitamin D3 at pharmacological doses, cells and tissues throughout the body including the immune system, act like dehydrated compressed kitchen sponges. They suck up vitamin D3 rapidly like sponges suck up water leaving too little vitamin D3 left in the bloodstream to help control CH... What your husband is experiencing is what I call a Calcitonin Gene-Related Peptide (CGRP) Cascade. This happens with CHers who are vitamin D3 deficient and sensitive to the slightest allergic reaction... The UC indicates a compromised immune system and that adds fuel to the fire. An allergic reaction triggers mast cells to degranulate... essentially dumping large quantities of histamine into the bloodstream and surrounding tissues. The histamine, in turn, triggers neurons within the trigeminal ganglia to express (generate) CGRP, SP and other neuroinflammatory peptides. CGRP is responsible for the neurogenic inflammation and pain we know as cluster headache. When it reaches the bloodstream, CGRP triggers mast cells to release even more histamine creating a circular chain reaction. That chain reaction continues until one or more of the chemical reactants are consumed at which point the chain reaction stops and cluster headache ends... for now... As luck would have it, our bodies recharge the mast cells and neurons setting us up for another CGRP cascade in less than an hour or two. During a CGRP cascade, none of the mainstream CH interventions are effective. This is why we need a first-generation antihistamine like Benadryl (Diphenhydramine HCL) as it crosses the blood brain barrier to block histamine H1 receptors at the genetic level within the trigeminal ganglia and elsewhere. This helps prevent histamine from triggering the release of CGRP. Benadryl (Diphenhydramine Hydrochloride) has a maximum dose of 300 mg/day so your husband can start taking 50 mg every 4 hours throughout the day and at bedtime. Just make sure he doesn't drive or operate mechanical equipment as this much Benadryl will make him drowsy. What your husband needs most at this point is oxygen therapy as a CH abortive. If used properly, oxygen therapy can abort CH up to pain level 9 on the 10-Point Headache Pain scale in an average of 7 minutes... That's a lot faster and less invasive than the sumatriptan succinate (imitrex) tablets. You can call your husband's neurologist and request the Rx be faxed to the nearest home oxygen provider... I wouldn't waste any time on your husband's PCP... He needs some continuing medical education (CME) in patient handling skills as it appears his bedside manors suck badly. If obtaining an Rx for medical oxygen from the neurologist falls into the "too hard" category, you or your husband can take up oxy-acetylene welding... Welder's oxygen is just as pure as medical oxygen as both come from the same distillation process and frequently from the same tank of liquid oxygen at the cylinder fill facility. Once you have the first cylinder, the cost of refills is about the same as medical oxygen. I've had a cylinder of welder's O2 in my garage since 2010... and since we live in woods with logging equipment, I actually do some welding/brazing at times... What's the nearest town/city to your home. I'll check on availability and prices for a welder's oxygen cylinder. The prices here in Bremerton, WA are ~ $200 for the first M-Sized (70 lb) oxygen cylinder and $35 for a fresh refilled cylinder when you drop off the first cylinder. I keep my oxygen cylinder on a hand truck. If 70 lbs is too much for your husband to lift, please let me know as there are smaller cylinders. A good CGA-540 15 liter/minute oxygen regulator can run from $35 up to $50 on Amazon. I've a homemade Redneck Reservoir breathing system that I'll mail to you... They work great and cost a couple dollars to make. In closing for now... don't forget the baking soda tonic... They can make a huge difference in lowering the frequency and intensity of CH. Keep you husband drinking water... I'll shoot you a PM with additional questions. You access your PM inbox by clicking on the words in bold saying "You have 1 New Message under the greeting "Good Morning Cupcakesparkls" in the upper left corner of this screen. Take care and please keep me posted... I'm here to help. V/R, Batch |
Title: Re: Supporter with questions Post by Cupcakesprkls on Jan 8th, 2018 at 8:13pm
Thank you guys sooo much! It is so nice to have people who actually understand. I feel like a lot of the minimalization from people is due to the word "headache" in the title. I have spent a good chunk of the day calling doctors to find him a new one until he can get into the neuro. And I have to say that as soon as I said headache they immediately discounted the seriousness if the condition. Whatever happened to doctors are suppose to help people? Now it seems more like help fill their bank accounts. It's sickening.
Plan is 1st thing in the a.m. I will have to find a welding place for o2. The biggest city closest to me is South Bend, Indiana. Where do I get the regulator from? How long will the 70lb o2 last if he is using it 8 times a day for 20ish mins? I will have him start the baking soda mix as well. He actually drinks almost nothing but water. He will usually have a vitamin water with dinner, and he has been drinking the coffee for caffine, and also been drinking a few red bulls when attacks come on. He is 43 now. Was diagnosed 4 hrs ago. As for the imitrex, I figured it was pretty bad to be taking that much. But I can see why he does. And in these attacks, all we want is for the pain to stop. In between attacks it's like he sits there so exhausted and scared of the next one. He doesn't want to sleep as he knows that almost certainly means another bad one with in an hour or so. I just keep telling him, it will get better, we will make it through this, painfree or close to is close. But I have to admit, in my moments of alone time, I am aware that there is a possibility, how ever small, that we could lose him due to this. There have been a few times where, during a bad attack, he begs us to let him end it and be free of all this pain. That should really make people understand how unholy this pain really is. :'( |
Title: Re: Supporter with questions Post by Cupcakesprkls on Jan 8th, 2018 at 11:23pm
That's one hell of a name.
I am getting really good at being the pillar of strength for my family. Sept 2017 my oldest daughter made an attempt on her life. Feels like we are cursed. I have definitely learned what real fear is. |
Title: Re: Supporter with questions Post by jon019 on Jan 9th, 2018 at 1:24am Mike NZ wrote on Jan 8th, 2018 at 9:10pm:
.....that one gave me chills.....never been anything more true....damn...made me remember how scary CH can be. Hang in cupcake...it only gets better from here....... Best Jon |
Title: Re: Supporter with questions Post by jon019 on Jan 9th, 2018 at 1:37am
"I will have him start the baking soda mix as well. He actually drinks almost nothing but water. He will usually have a vitamin water with dinner, and he has been drinking the coffee for caffine, and also been drinking a few red bulls when attacks come on."
Coupla notes: High consumption of water has been demonstrated to benefit some clusterheads....vice versa, dehydration can be a trigger. Would suggest elimination of all caffeine EXCEPT for abort purposes. The human body is a marvel of stasis...if it gets used to caffeine the effect is moderated. You want a JOLT! Speaking of which...Red Bull has a surprsingly small amount of caffeine.....you really need something like Monster or Wired or NOS....with at least 100-120 mg caffeine and 1500 mg taurine per serving.(caffeine and taurine being better in combination than separate.) Most come in 16 oz cans so 1/2 can usually enough but there's always more in reserve. I get them at grocery outlets or dollar stores for $1/can...less than 1/2 that of Red Bull with more of what you need. Most come in sugar free versions (watch out for aspartame tho, is a trigger) as regular has even more sugar than regular soda. 5-hr Energy is a 2 oz bottle with the necessary amts of caffeine/taurine. Be sure to read the label and look for discount stores as this brand is WAY TOO expensive...just like Red Bull. My experience that COLD energy drinks, gulped rapidly near to the point of brain freeze, along with the carbonation, are more effective. I also usually went with the sugared version as low blood sugar was a trigger............. Hang in there....we got your back Best Jon |
Title: Re: Supporter with questions Post by jmc1106 on Jan 9th, 2018 at 2:46pm
Jumping in about doctors...I am also a supporter, and my husband had similar issues with nobody taking him seriously, even when we told the doctor about recommended treatments. She prescribed oxygen at 2 liters...we just bought a higher-flow regulator online to get by.
Find a new doctor...however far you have to go. There is still nobody in town who is truly well-versed on the subject, but we finally found someone...a PA...who was willing to read the literature that I printed out from this website and agreed to give it a try. Then one thing we do at the end of a cycle is to stock up on generic Imitrex, renewing the prescription a few times after it is no longer needed (insurance allows 9 tablets per refill, we do cut them in half). We make sure there is a decent amount of Verapamil to get started the next time (because he needs a small dose on top of the D3 regimen, and because it WILL hit on a weekend). And we make sure to have two tanks of O2 in the closet. It sounds like you are doing all the right things and getting great advice from the group. With this resource and your diligence, you are going to kick this! And I can't tell you what a relief it is to see that the beast is coming for its annual visit, but not go into total panic mode because you know you have the tools and support to deal with it. Hang in there! |
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