Spousal support?

[AnitaJ]

Hi, all.

 

My husband's a cluster sufferer, diagnosed about 4 years ago. Seeing him go through this pain is heartbreaking, and I want to do whatever I can to help him. I drive him to the hospital, stay with him for days, get all of his meds, keep the oxygen tank filled, advocate for him when he's in too much pain to speak, whatever he needs.

 

Do you have any tips or advice for spouses who hope to support? Even if it's just to tell me to stay out of the way, which I do frequently.

 

Thanks for your support.

[ThatHurtsMyHead]

AnitaJ,

 

You're a ROCK STAR!!!!   Don't let anyone say different.  I think sometimes the supporters of us with CH have it worse.  You have to stand by and watch, something you really can't do anything about.  

Just my opinion, but anything you can do for him before or after an attack, I'm POSITIVE he appreciates.  As for during the attack; There really isn't anything you can do, but let him know you're there.  Just knowing someone is sticking around is HUGE and I commend you to the sky for it!  We go through ups and downs and don't know where to turn often.  

 

J

[SonsOfScotland]

Last night I got hit so bad I was in tears.  This is rare for me but it happens. 

My wife came down into our basement asking me what she could do.  I could only yell at her to leave me alone.

I think mostly everyone would agree that being alone during a hit is essential.

My wife brings me zip-locked ice bags, water, and makes sure the kids leave me alone.  I am grateful for that.

 

These headaches won't kill us and eventually they go away for a while (sorry chronics, I don't know how you guys deal with this).

If it helps I could have my wife respond to you on this board.  Stay strong -

[CHfather]

I'm a supporter, too, I have found that if I kept quiet and unemotional I am permitted to stay nearby during an attack so I can get anything that is wanted or needed.  This isn't true for everyone.  Or I could check in from time to time.  It is completely agonizing to be so helpless when there's so much suffering.

 

It troubles me when you write about taking him to the hospital.  To me, that means that he might not be working with all the resources he could to manage his CH.  Can you talk about what he uses to treat it?  How quickly does the oxygen work (is it a high-flow system with a top-quality mask)?  It's possible that we might have some advice that will help. Busting is one option, but things like the D3 regimen, energy drinks/shots, melatonin, watching out for triggers, and even the feet in hot bathwater approach have all helped some or many people.

[AnitaJ]

Thanks to everyone for taking the time to respond and for your kind words. I truly believe that you with CH are the real heroes! You are all brave and strong, and I salute you.

 

CHfather, thank you for your note about oxygen. After doing some more research on this site last night, I've come to the conclusion that we are NOT using oxygen as it is meant to be administered! We have a small tank with a regular mask, and after all I've read, it appears that it's working as a band-aid on a gunshot wound. Luckily, my husband was able to get an appointment with his very caring neurologist this morning. I printed out some of the resources from this site and gave them to him to discuss with the doctor. I'm hopeful that we'll be able to procure a larger tank, a proper regulator, and the correct mask.

 

BUT--any tips for this would be extremely helpful! I'm familiar with how to open/close a tank, but relatively clueless as to all of the other more complicated steps that are noted in the materials on this site.

 

As far as other measures, he takes daily verapamil, has emergency sumatriptan injectors, and will drink the energy shots/drinks when he feels a cluster coming on. You are absolutely right that the hospital is NOT the best place, but when he's truly in so much pain, the only thing that seems to help is knocking him out with morphine so that he can rest until it passes. But as has been noted on this site, opiates are a temporary solution and often end up making it worse. This last hospital stay we were lucky to start a steroid taper immediately, which helped him in the short term. We are still in the middle of a cluster, however.

 

Again, thank you for your support, and any more advice is truly appreciated.

[CHfather]

The vitamin D regimen has helped lots and lots of people: https://clusterbusters.org/forums/topic/1308-d3-regimen/

Many people find that they have to go to pretty high levels with the verapamil before it really helps: 960 mg/day, or in some cases even more.

The sumatriptan injections can be split: https://clusterbusters.org/forums/topic/2446-extending-imitrex/

This site was founded by people who had been through scores of prescribed meds (and there are scores of things that can be, and often are, thrown at CH) and found that using psychedelic substances, often at levels where there are no psychedelic effects at all, was the most effective way to end cycles and even prevent them.  This approach is called "busting."  You can learn about that, if you are interested, in the numbered files in the ClusterBuster Files section of the board. 

Let us know how the O2 goes.  That can be a huge change, getting it right.  If you have the wrong things, that is probably the fault of your oxygen provider. So if you have a prescription, that's probably who you should take it up with (unless the prescription was written wrong).  As you might have read, to go beyond the basics to a higher-flow regulator and a top-quality mask, you'll probably have to buy those things on your own.  Here's where you'd get the mask: http://www.clusterheadaches.com/ccp8/index.php?app=ecom&ns=prodshow&ref=clustero2kit

His neurologist sounds like at least s/he knows the CH pharma basics (verap, O2, and triptans).  That is surprisingly unusual.  If s/he is also caring, that's another big plus.

[surgeonasim]

such a blessing, having someone around ....who understands and cares.

....Bless you

 

....and as always, CHFather is so right about the rushing to hospital thing. In my opinion it is an excruciating exacerbation...for the patient.

 

Listen to the wonderful folks here and I assure you, many great things will come your way.

I wish you and your husband a speedy and long lasting relief.

[AnitaJ]

Thank you all again! I'm very interested in learning more about busting, and I hope my husband will as well. Once this cluster subsides I'll be diving into that option.

CHfather, THANK YOU for the tip about splitting the injections. We did that last night and it was so helpful. I will also definitely check out the vitamin D regimen.

And yes, for anyone in the DC area, we have a truly wonderful neurologist and I'm happy to share his information. My husband is lucky to have found someone who knows about clusters and is always willing to listen and assist.

And I feel lucky to have found this forum! Just having support and knowing we are not alone is so helpful.

[CHfather]

Would love to know who your DC-area neurologist is.

How did the oxygen discussion with the neurologist go?  If s/he didn't jump on getting the O2 thing right, I'm not as interested in getting a name.

Regarding the D3, after a few days at 10,000IU to be sure he has no adverse reaction, your husband should probably start taking higher amounts right away.  Does he have any recent blood-test results to show what his current D level is (that is part of any standard blood panel)?

[AnitaJ]

CHFather--unfortunately, I wasn't at the appointment with my husband, and from what I understand, he didn't really ask about the oxygen. (I hate being this pushy, but I'm the one who really wants to get all of the supplies together because I know it could help him. He's just a little skeptical since in his mind he's already "tried it" and it didn't work.) So he has plans to go to the store next week and I'm encouraging him to ask about regulators and masks, and if I can go with him I will.

His neurologist is Dr. Pedro Macedo at Washington Medical Group in Dupont Circle. I highly recommend him; he's the one who finally diagnosed my husband as opposed to dismissing his pain.

[CHfather]

Anita,

What "store" would he/you be going to?  He can't really ask about regulators and particularly about masks at a welding supply store, and I don't think there are actual medical oxygen stores.  Maybe there are--I've been wrong before.  I guess we've led him to the water, and the rest is up to him, but he's making a huge mistake not to take our word for it.  Many people with CH do resist trying new things, or trying things in new ways, because they have been disappointed so many times in the past and it's very crushing to feel that disappointment; but he really should be listening on this one.

[mit12]

Anita,

You are truly amazing. For me I can not answer a question while in an attack, so being present and willing is great incase he asks for something.

[AnitaJ]

Thanks, all!

CHfather, there are various medical supply stores in our are that supply oxygen tanks for home use as well as other equipment.

I do have a question, just curious. When we went to the ER this past time, the doctors and nurses were (unsurprisingly) not very knowledgable about CH. They gave him Benadryl and Valium at first. Neither brought relief, but I'm wondering--are those things that may have helped others with CH before? I'm stumped as to why they prescribed those. I assume it's because they were not terribly concerned and just threw some drugs at us (didn't have the best attitudes).

[AnitaJ]

Typo-- I meant to say in our area.

I would also like to reiterate my thanks for taking the time to read and respond to my messages. I truly, truly appreciate it.

[Psiloscribe]

Anita,

First off, thank you for your support for your husband. Just knowing that you'll still be there after the attack and after the cycle are over, is the most important thing we can ask of any supporter.

 

Helping with the research so that he can always be aware of things happening that give him some hope is huge. We often don't want to hear any thing at all and we can shut down. It helps to know that others are working on solutions.

​As to what the hospital offered, benadryl and valium are pretty useless. The valium probably would have helped you more than him. When going onto ERs cluster people are often told to "relax and calm down" and the doctor will see you soon. I guess we seem a little on edge to people not knowing what we're going through.

The Benadryl at least has some research behind it's use. Some people with clusters use it to help get through those night time attacks. It can help people sleep.

Clusters were at one point known as "histamine headaches" and some cluster centers treat people with an IV Histamine treatment. Histamine levels do increase during attacks. Researchers aren't sure if its a result of the attacks or if it has some triggering effect. The histamine treatment is done over a long period of time and given constantly to try and get the body to desensitize itself to histamine. it does help some people.

​Hence, the Benadryl trick. its given for the anti-histamine effect.

​all the best,

Bob Wold

[CHfather]

Thanks for the information about stores, Anita.  I just looked at a couple of DC-area stores, just out of curiosity (and because we sometimes need supplies in DC), and my only caution (aside from the fact that I am positive he will need a prescription to get oxygen) is that, gosh, things seem expensive. Regulators at the two places I looked at are about twice what you can get a quality regulator for online. Also, they seemed only to have regulators that go up to 15 lpm, and there's no point in buying a 15 lpm regulator at those prices when you can get a 25 lpm regulator for less.  I couldn't tell whether these stores rent tanks, but the ones they seem to sell are also very expensive.  The prices for cheap non-rebreather masks are fine.

 

I'm not sure what he/you would be asking about, but I don't want the prices to scare him/you off.  It seems to me that if he has a prescription, you'd want to get it filled through an oxygen supplier (Lincare, now that they have been properly educated about what people with CH need, does a good job). Among other things, it becomes the supplier's job to deliver the tanks to you. A tank of the proper size required for CH is very heavy and unwieldy. 

 

If you decide to consider the welding O2 route, I do know my way around DC-area suppliers, not that there's much to know except where they are.

 

Regarding Benadryl, as Bob (and you) said, it's ridiculous.  But as Bob said, histamines are implicated in some way in CH, and lately there have been a couple of people here who have found that a low histamine diet (a rigorous thing to do) has helped them a lot. See https://clusterbusters.org/forums/topic/4446-low-histamine-diet-worked-for-me/. Also, the creater of the D3 regimen (whose screen name is Batch) has found that it helps a lot to add Benadryl at times when the pollen count is high. 

[AnitaJ]

Bob--thank you so much for responding! Your support and information is much appreciated. I am honored that you took the time to answer my question.

 

CHfather, we have some good news on the oxygen front. My husband is just now returning home with two tanks and a 15 lpm regulator (I've already ordered him a 25 lpm online, but they gave him the 15 with the tank, so we just took it). I also ordered a nonrebreather mask online that should be arriving shortly. I cannot thank you enough for all of your advice.

 

We did ask for a larger tank, but they were unable to give it to us (why? I'm unsure; unfortunately I wasn't able to be there with him at the store). They DID attempt to give him a converter and send him on his way, but due to a lot of the materials on this website, I was able to let him know that he did NOT want to leave with that and not the tanks. He politely and firmly stressed to the store that a converter would not be sufficient, but somehow they ended up giving it to him anyway along with the tanks. So, not sure what we should do with that. He says it's pretty unwieldy. I guess I'll know more when I get home and see for myself.

 

Some more good news is that he was able to obtain some relief last night with only 8 lpm of oxygen, so we are very hopeful that a stronger flow will abort his next hit.

 

I don't know what I would do without all of you. Your help and support is amazing. I feel so much hope just corresponding with all of you. Thank you for providing me with your experience, knowledge, and kindness.

[CHfather]

It is so gratifying when people here really do their homework and take responsibility!  THANK YOU.  Yes, concentrators are generally less effective, and that machine is bulky (and often quite noisy).  Depending maybe on how much it will cost you to keep it around, you might put it in a closet in case he runs out of O2 and you don't get resupplied on time (which is a possibility with two small tanks, which -- depending on how small they are and how quickly he can abort -- might only have enough O2 for maybe three aborts each).  

 

Ultimately, he'll probably want to have this mask: http://www.clusterheadaches.com/ccp8/index.php?app=ecom&ns=prodshow&ref=clustero2kit

 

You probably already know this, but the issue with flow rate is to have a flow that allows him to breathe steadily and effectively without having to wait for the bag on his mask to fill up for the next breath.  The reason that many people have better results from the 25 lpm flow is that it allows them to breathe fully, deeply and forcefully.  In the beginning, 15 might be enough for him.  Remember that if he quickly chugs some caffeine just before getting on the O2, it will probably speed up the abort time.  Most often, people choose an energy shot or energy drink as the source of that caffeine.  Even though a Red Bull has about the same amount of caffeine as a cup of coffee, it is believed that other ingredients in the energy drinks/shots are somehow also helpful. An energy shot, such as 5-Hour Energy, actually has considerably more caffeine in an easily-drinkable form.

[AnitaJ]

Well, bad news. I don't know what went wrong, but we tried the o2 abort today and it didn't work. We have a nonrebreather mask from the oxygen store and were trying 15 lpm (with breathing techniques from here http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1313766756)and it kept getting worse. We are now back at the hospital. I'm so disappointed. What did I do wrong?

[CHfather]

Wow, what a terrible thing.  I can't imagine what could have gone wrong.   When you say "it kept getting worse" and you're now at the hospital, do you mean it got worse faster or more strongly than his typical attacks?  That's something I've never heard of; in fact, I've never heard of properly used oxygen not having some effect on a CH, even if it didn't abort the attack.  The reservoir bag on the mask was emptying as he inhaled and filling properly after he had inhaled?  The link you put in doesn't work, but I imagine you're talking about a hyperventilation-type approach?  Did he do some kind of caffeine/energy drink just before?  Did he get on it as soon as he felt the attack coming on? (I'm just trying to be sure we know all the variables.)

 

I'm going to PM this to a couple of experts to see what they might have to say.

 

So sorry!!!!!!!!!!!!! 

[ThatHurtsMyHead]

AnitaJ,

 

I think it may be common for medical O2 supply companies to insist you take the concentrator.  They get big $$$ out of insurance companies for the monthly rental of those.  I had one for a short while and the medical supply company charged nearly the entire cost of a concentrator for the monthly rental price to my insurance company.  I've twice had to refuse them from O2 med supply companies.  You may be running into the same scenario with the size of O2 tanks.  My last two O2 supply companies refused to give me a large tank for home use.  They said it was against their company policy for home use to have larger than 'E' tanks.  I think the more logical answer is, they want the larger $ payday from the insurance company to make trip after trip out and replace numerous O2 'E' tanks instead of an occasional larger tank.  Just my opinion anyway.  

 

re, O2 not working today:

Not sure if this is what you've run into, but I find that if I don't get on the O2 as soon as I start feeling the attack come on, then it doesn't do much or even anything for that attack.  The real key to the O2 working is you have to get on it at the first sign the attack is coming, and not after the pain kicks in.  

 

PFW,
J

[AnitaJ]

Thanks for the responses.

 

I wish I had more info, but by the time I knew he needed help I was rushing home to him, so not sure of the specifics...I think he probably started when the pain started and not before. It's hard for me to understand, because since he's in a cluster, the shadow is always there, and it's been coming and going...last peak hit was at midnight, and he took a sumatriptan shot then which helped, but the shadow was there all the way until noon when his next peak hit. I know he drank a Red Bull right before he grabbed the o2. Perhaps it's just that he got to the oxygen too late? 

 

I was just so certain that this would work, and I'm so worried that it won't. This cluster seems particularly bad; they're very close together and the shadow is always there. I guess I'm just a little discouraged.

[Dallas Denny]

So sorry Anita! I've only known of oxygen doing that to one other clusterhead....a kid named Michael whose Dad came here to search for help...I wouldn't have believed it had I not witnessed it in person twice...the first time was even with a demand valve! Like Chf, I'm at a loss for an explanation but sending prayers and positive thoughts ya'lls way!

DD

[CHfather]

One of the two oxygen experts I wrote to has responded. The following is from Batch, who in addition to being an oxygen expert and all-around great guy is also the creater and popularizer of the D3 regimen.  You'll see why I mention that when you read his reply.  I have shortened it a little bit because there are some details about a new approach to using O2 that Batch has developed, which your husband doesn't currently have the equipment for.

 

I know that everyone who has been following this thread or participating in it is deeply disappointed along with you.

 

>>>>I read through all the posts in this thread and have some suggestions.

 

1. Try to get the gent in to see his PCP for the 25(OH)D and vitamin B12 lab tests. It is almost axiomatic he's deficient in both.   If the lab tests are going to take more than a couple days, have him start the anti-inflammatory regimen with 10,000 IU/day vitamin D3 on the first day.  Then, if there are no reactions to any of the supplements, start the 2-Week loading schedule.  When complete, drop back to a vitamin D3 maintenance dose of 10,000 IU/day plus all the other cofactors for at least two weeks then go in for lab tests of serum 25(OH)D, total calcium and PTH.  Even if there isn't a complete favorable response to the anti-inflammatory regimen in the first week, this regimen should result in more effective aborts with oxygen therapy with shorter abort times. 

 

2.  If there's no response to the anti-inflammatory regimen after a week to 10 days, start a 7 to 10 day course of Benadryl (Diphenhydramine HCL).  25 mg in the morning and 25 mg before bed is a very safe dose.  Just tell the gent not to drive when taking Benadryl (Dipenhydramine HCL) as it will make him drowsy.  If he needs to drive, have him take 50 mg when home for the day and done driving.  It will be just as effective.   Diphenhydramine is a first-generation antihistamine that crosses the blood brain barrier to block H1 histamine receptors on neurons throughout the brain including the hypothalamus and in particular, the trigeminal ganglia where calcitionin gene-related peptide (CGRP) is produced.

 

The rational for Benadryl (Diphenhydramine HCL) is he may be experiencing an allergic reaction.  Allergic reactions create a flood of histamine that hits the trigeminal ganglia and results in the release of CGRP.  CGRP results in neurovascular inflammation and the pain associated with CH.  CGRP has been found in several studies to be elevated during the pain phase of migraine and cluster headache...  It gets worse...  CGRP in turn triggers the release of more histamine so you end up in a circular self-sustaining perfect storm cluster headache that continues until the chemical reactants are consumed which ends the CH attack... for now...  I am convinced a histamine reaction results in the CHer being refractory to just about all methods of CH intervention including oxygen therapy and vitamin D3.

 

3.  Oxygen therapy works most effectively if used with hyperventilation.  We proved that with the oxygen demand valve study where 7 CHers from CH.com used flow rates that support hyperventilation either with an oxygen demand valve or with a 0 to 60 liter/minute regulator and Cluster O2 kit at flow rates around 40 liters/minute. 

[Racer1_NC]

Well, bad news. I don't know what went wrong, but we tried the o2 abort today and it didn't work. We have a nonrebreather mask from the oxygen store and were trying 15 lpm (with breathing techniques from here http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1313766756)and it kept getting worse. We are now back at the hospital. I'm so disappointed. What did I do wrong?

First off....sorry I'm late to the party.....and now some questions....

 

The mask.....for the oxygen store.....did it have holes in the mask area and a strap to hold it on one's head? If so....that mask is slightly better than nothing for our uses but not nearly as effective as the mask that CHFather references in his post. Worlds of difference between the 2. The Cluster Kit uses a mask that forms a tight seal allowing only 100% O2 to be inhaled. This is important.

 

Did the user have to wait on the bag to fill up between breaths? If so, this can cause O2 to be less effective.

 

From my observations..most any adult male attempting to abort a cluster headache can out run 15 lpm with ease. While there are some that report successful methods using lower flow O2, my personal experiences have been that deep breaths of pure O2....trying to hyperventilate.....and never having to wait on the bag to refill between breaths are what works for me.

 

Sometimes it takes a little practice, trial and error to find out what works for an individual.

 

I may catch some flack for saying this....but I'd be remiss if I didn't. Sometimes O2 doesn't work even with the proper mask, flow rate and methods. Granted most failures can become successes with some help / pratice but there are some that it just plain doesn't work for.  Heck...I've had a couple times that it didn't do a damn thing.....and a few that all it did was hold the pain down to a less than critical level. I'm lucky.....this doesn't happen often but it's damn scary when it does. That being said....DO NOT give up. O2 works for many and one "no effect" usage isn't nearly enough of a trial.

 

Please....let us know how it's going. There are many years of experience here and we don't mind sharing....as the saying goes....it's what we do.

 

Bill