How do you work?!

[emilyd911]

Hi, 20 year old woman with CH. I've had them for 6 years now. My cycle started back up after being in remission for almost 2 years. How do you guys cope with the pain at work?? What do I tell my boss? I can't just stop what I'm doing for an hour to go cry in the bathroom.

Also, have you guys noticed any difference in sensitivity in the eyes one cycle from another?

[CHfather]

emily',

Without saying that coping with CH at work is simple, because it's far from that, we should know what you're now using to abort attacks.  Do you have oxygen?  Injectable sumatriptan (Imitrex)? Have you tried energy shots/energy drinks?

 

In the long run, of course, preventing cycles or making them less severe is also critical for being able to work.  Can you tell us what preventives you're using?

[spiny]

Hi Emily!

 

I have found that the longer the cycle, the more Horners Syndrome sets in for me. It will constrict the the pupil in that eye. If you look at your pupils in low light, the one that is on your CH side likely will not dilate to the same degree that the other eye does. It does mess with my vision. Is it more sensitive? Well, i guess that depends on your definition of sensitive. I may be completely off base here regarding your question. But, just testing it can be enlightening.

 

I look forward to reading the answers to CHF's questions.

 

If you slam down an energy drink or some form of caffeine at the first sign of a hit you can often avoid the hit totally. I would keep this with me at all times at work! Preferably refrigerated. If you have a prescription for O2 then keep a small portable tank at work for aborts. You can be back to work in just a few minutes with O2. I find that these are the two best aids in this situation. Once your boss understands the situation he/she is likely going to supportive in your efforts to control it and continue your day in short order.

 

spiny

[emilyd911]

Hi all! Unfortunately I'm not using anything at the moment. They just started back up about a month ago and the fist 6 attacks was spaced out so I thought they would go away. Silly me.. I was going to get the injections but they are far too expensive so I will be using the pill come tomorrow. My doctor is also writing me a prescription for o2. I took melatonin last night to help me set a good sleeping schedule and it helped some. The doctor I seen yesterday gave me a prescription for pain pills and told me to get thru the weekend with these. I can't take 5 hour energy due to heart rhythm issues but I do remember that last time I had my cycle I took excedrin migraine and it has a ton of caffeine in it and they help wonders! I am totally opposite from most with CH, I get mine after 2-3 hours of being awake. So as soon as my eyes would open I would take of them caffein pills. I'm really excited to get the oxygen and try it out. I feel like this cycle is much worse in certain ways. I have to go to work now and explain to everyone why my eye is draining and I look like I've been thru and back. Thanks guys for all the help!

[emilyd911]

Also, I wanted to ask if you guys ever "sleep in" do you think it makes your CH worse?

[CHfather]

The pills don't work for at least 75% of people.  Maybe the nasal spray is less expensive than the injections?  Most pharmacies have reduced-price coupons for the injectors and the spray (look at a place like goodrx.com), and you can split your injections to get 2 or 3 from one injector ( It's still not cheap by a long shot, but could be worth it.

 

Please let us know what you get from your O2 supplier.  You need big tanks (M tanks) and a smaller more portable one or two for work (E tanks), which you can negotiate with the supplier. Tanks of O2, NOT a "concentrator," which makes O2 out of room air.  The prescriptions should be for a regulator that goes up to a flow rate of 15 lpm (liters per minute), and a non-rebreather mask.  I strongly advise you to call your supplier and discuss all this with them before they deliver anything to you.  If your prescription is for less than 15 lpm, you can buy a regulator separately.  Most oxygen suppliers have very little experience with CH, and they just might bring you a concentrator with those things you stick in your nose (cannula), because that's what most of their customers get.  Read this: https://clusterbusters.org/oxygen-information/

 

Two Excedrin migraine pills have as much caffeine as one 5-Hour Energy shot, and a lot more than one RedBull.  It's believed that some stuff in the energy drinks helps with CH; there's nothing in the Excedrin besides the caffeine that will help.

 

Try increasing the amount of melatonin you take at night.

 

In the short run, you should probably also be on some kind of pharma preventive, such as verapamil, unless that is contraindicated by your heart issues.

 

For most people here, busting has been the best strategy in the long run for long-term preventive effectiveness and no lasting side effects.  Read about busting in the numbered files in the ClusterBuster Files section of the board.

[emilyd911]

Thank you so much for the information! I will definitely try the 5 hour energy! I tried that preventive but it caused some weird side effects. Does anyone on here know if it's normal to have them spaced out? Every cycle that I have had was always a repetitive one so I'm sure why they are spacing out now? I have seen the things about busting and I am trying to prep myself for that.

[CHfather]

I can't specifically answer your question about the attacks being spaced out, except to say that it seems to me to be unusual but probably not unheard of.  CH patterns are so variable.  Similarly, regarding your earlier question about sleeping in, I think a lot of people get attacks when they alter their sleeping patterns, which would include sleeping in and particularly seems to include napping. Not universal, but very common.

[Bejeeber]

For my first couple of CH cycles the attacks were spaced out, as in I might go a few days between attacks, if that is what we're talking about.

 

The only instances where I recall seeing imitrex pills reported as effective for CH have been when someone knows exactly when to expect an attack and will take the pill an hour or so before, or if someone has an important event during which they can't afford to suffer a CH attack, so they take the pill before, just to ensure they'll remain PF.

 

If imitrex pills only cost 1/3 as much as the injections (which I agree are just crazy expensive), well you could potentially still get as may aborts per $ with the injections, following the Extending Your Imitrex method.

 

Glad you're pursuing the O2 since it is the nice non-toxic, side effect free way to abort attacks. 

[emilyd911]

I started my new sleeping pattern last night and I will continue to go by it until I know I am in remission. The first few attacks I had during this cycle was spaced out by a week or more at a time. I will be very happy to get my o2!

[mit12]

I have found that any change in eating time, going to bed or sleeping time will cause the beast to wake up. As far as work goes I had a microwave and heat packs in my office. I turn off the light put the heat pads on my head and neck and do my best. It is a brutal situation to live with.

[emilyd911]

Hi guys, I was cluster free yesterday but as you can guess it returned today. Lasting about 30 minutes. So, with the 5 hour energy has anyone gotten multiple headaches after taking one? Until I get my o2 I will be relying on these things.

[emilyd911]

I contacted my doc today about asking for o2 (she has been my doctor since before I had my CH) anyway, some returned my phone call and said "what is o2 gonna help with?" I nicely asked her if she had any idea what cluster headaches was and she didn't answer, she then told me that she couldn't get me an apt for another month and "if it gets to bad go to the ER" with anger I told her I would find another doctor and hung up. How can you be a nurse and not know these things? I'm so upset. I will spend tomorrow looking for a new doctor.

[CHfather]

I'm so sorry that happened.  I wish it was surprising, but it isn't, at all.  Most doctors, even neurologists, know very little about CH.  Finding a doctor who knows anything, and who cares about learning, is very rare.  It's even more rare to find one who will prescribe O2.  Completely crazy, but that's the way it is.

 

You have a few options.  One is to go back to your long-time doctor, particularly if she is the one who diagnosed your CH, so at least you aren't starting from scratch. Maybe she will agree to be educated in order to help you.  You can bring her some of the relevant medical literature:

This is the double-blind, placebo-controlled trail that was published in the Journal of the American Medical Association: http://jama.ama-assn...02/22/2451.full

To get the American Headache Society's guidelines  for treating CH, type this (without the brackets) into Google: [goadsby "treatment of cluster headache"] 

This is an large-scale anecdotal reporting about the use of oxygen for CH: http://www.clusterhe...urvey-final.pdf

 

See if you can get 1 and 2 to your doctor or someone in her office, maybe the one who asked you about O2, unless you think she is too dense or defensive. But she did ask; and you can answer.  Even with this completely persuasive information, many doctors will still resist prescribing O2, in part because (although they usually won't admit it) they don't know how to write the prescription.  If you can tell her how to write the prescription, it might help. It should read something like this: "Oxygen therapy for cluster headache. Up to 25 min of 15L/min with non-rebreather mask."  (In both cases there, the "min" is for "minutes.") She can fax it to an oxygen provider, or give it to you to shop for an O2 provider.  If he won't write it for 15 lpm, but only for something less, just take that -- you can get your own regulator once you have the tanks.  The discussion of how many tanks and what sizes is between you and the oxygen provider.  Hopefully, you'll get that far and you can get back to us about specifics.

 

With almost any doctor you find, you will still meet with ignorance and resistance.  If you can get to a headache center, that's your best bet (still not guaranteed) for a good doctor (and their wait times can be pretty long).  There is a list of recommended doctors by state here: https://clusterbusters.org/cluster-resources/  In general, these docs are recommended because they understand oxygen.

 

There was one guy who called doctor's offices and walk-in clinics and asked if they had patients with cluster headaches and if they prescribed oxygen to those patients.  He got yeses at a walk-in clinic and was able to get his O2 quickly.  (I have a theory that walk-in clinics/urgent care places are more likely to know about CH better than doctors. Just a theory.)

 

You can set up a system using welding oxygen, which many people do. You'd need to buy or rent some tanks, a regulator, and a mask.  You can do all that pretty quick if there's a welding supply place near you, but of course insurance isn't going to cover that.

 

In the short run, some people recommend getting your nose up against a cranked-up air-conditioning unit, or in your freezer, and breathing deeply through your nose.  Not the same as O2, but people have said that it helps.  I have no experience with this.