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graci

Severe headache

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My headache started 2 years ago (I am 45 years old). Past month, I have have constant attacks and I am not even sure what it is anymore. I have seen 3 ENTs, TMJ specialists, neurologist, eye doctor, but no one is sure what is going on. With Coronavirus, I was able to get an appointment with a neurologist who did a televisit and asked me to do Gabapentin.

I originally thought that it was to do with a retina laser surgery I did because the pain started right after that. I tried second opinion with 2 other eye doctors, and they both don't think it has anything to do with my eye. I also had orthodontic work around the same time, so I thought it was to do with TMJ.

I get this terrible sinus pain /pressure almost on top - mostly one side at a time, some facial pain, pain it forehead, and this cloudy/foggy pain on my head, sometimes at the back of the head and sometimes almost on top. ENT doctors did CT scan, endoscopy of sinuses and everything came back perfectly fine. At times I also get pain in occipital area and feel pain radiating to back of my head. I have never had any headaches prior to the 2 years. I don't have pain behind my eyes, and I am not sensitive to light and sound.

I am in Maryland, in Washington DC area, and would appreciate if you know of any doctors in this area. Also, I would so much appreciate if someone could comment on if they think this is a cluster headache. 

Thanks so much!!

 

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Hi Graci and welcome to the community!

To be honest, what you're describing doesn't sound like classic cluster headache to me.

Typically clusters are one sided with pain behind the eye, temple and forehead accompanied by runny or stuffy nose and a watery or tearing eye.

If your neurologist isn't also a headache specialist, I would advise trying to find one who is.....I'm sorry to say that I'm not familiar with one in your area though!  Gabapentin aka neurontin usually doesn't work well for clusters and there's other front line approaches so I doubt that your doctor is very knowledgeable about clusters!

Dallas Denny 

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Thank you very much for your response. The neurologist I had an appointment with is not a headache specialist, and unfortunately I was only able to have tele-visit with him. I do see some headache specialists in the area, but can't seem to get an appointment with them until June. 

I do have my nose stuffy and with clear discharge (not runny though), and it is mostly on one side at a time. It is very common for the side to be shifted though. 

I tried Vitamin D3 (10000 iu) that I had at home yesterday, and that did seem to help.  I am also sipping on ice-cold water for now, and that seems to take the edge off. 

Thanks for this wonderful community and the willingness to help!! 

 

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I don't have oxygen. I read about it, and wasn't really sure how to get it. Do I have to call my doctor?

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8 hours ago, graci said:

I also had orthodontic work around the same time

I agree that it's hard to tell right now whether you have CH.  But the anesthetic that is most typically used for dental work does set off severe CH attacks in many people who do have CH.  

Georgetown's Headache Center is supposed to be good -- but I suspect there's a long wait (if people are even seeing patients now). U of MD has something, too: https://www.umms.org/ummc/health-services/neurology/services/headache-migraine 

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Thanks so much. This is so great information. I am actually hopeful now. I will actually try and ask my doctor about giving a prescription for Oxygen. I am not medically savvy and not sure if I will be able to figure out the non prescription route.

Thanks for the information on the area doctors also. I will call them in Monday and see if I can get something. 
 

The neurologist I saw via tele-visit has asked me to go to his office physically to get occipital nerve block shots. Do I need to go to a headache specialist before I get that shot??

 

Thanks again so much!!!

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Just as some general information, you can use the search bar at the top right of the page to see what others have said related to questions you might have. Occipital nerve block is often abbreviated as ONB, so I would think that if you put that in, or the whole phrase, you'll see some thoughts.  My own thought on this (others might disagree) is that if you can get an O2 prescription and quick delivery, that's where you should start, along with jumping on the full D3 regimen at "loading dose" levels and maybe a prednisone taper.  Pred will typically stop attacks for a few days, and sometimes will stop a cycle.  My only qualification to these suggestions is that if you don't have CH, the oxygen very probably won't help, whereas it might be (I don't know) that the ONB would work for other conditions.

Setting up a welding O2 system is pretty straightforward, and we can pretty much walk you through it in addition to the information in the ClusterBuster Files. I don't know whether "industrial gases" (the category that includes O2) are considered essential services and therefore open. I know that there are Airgas offices in MD just outside DC, and also in VA just on the other side of DC. You can get O2 there, if they're open. Then it's just a matter of buying a regulator and a mask online and connecting up your system.

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I just called my neurologist, and he was hesitant to send a prescription for O2 but he said he will send it. He said he wasn't sure that it was cluster headache, but agreed that it didn't hurt to try. He told me that the insurance might not cover it, so I am waiting to see how mucht the cost will be.

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Good!  I hope it helps.

Doctors usually fax the prescription to a supplier (maybe they have a more modern method of sending them these days).  This advice is from this file, where you might want to read, or re-read, the part about oxygen:  https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/      "To avoid frustration, it might be wise for you to contact your O2 supplier before their first delivery to make sure you are getting the right equipment.  Many of them are not used to providing for people with CH.  You want cylinders (tanks), not a concentrator.  At the least, you want one large tank (an M tank or H tank) and one smaller tank for portability (an E tank).  Multiple versions of each tank are better.  You need some kind of stand, at least for your larger tank(s).  You want regulators that go up to at least 15 liters per minute (lpm), and preferably up to 25 lpm. (I say "regulators," plural, because the large tanks and the smaller tanks take different types of regulators.) And you want a NON-REBREATHER mask.  These are all things they should know to give you to treat CH, but often don’t.  When the stuff is delivered, have the delivery person set it up for you and be sure it's working."

Virtually all private insurance must eventually cover oxygen for CH -- but it often takes a protracted fight to get it.  Medicare and other government programs generally do not cover O2 for CH, although there has been some consideration of waiver to that during the current crisis.  See this post if that is relevant to you: https://clusterbusters.org/forums/topic/6975-urgent-request-regarding-oxygen-medicare/

 

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Thanks so much CHFather. I have not still heard back from the center where the prescription was sent. When I called them, they said that they did not receive anything. It is just so frustrating!

How much does the O2 cost from welding company?

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graci, your question is probably more complicated than you think . . . .  The simple answer is that for you, to test whether O2 works for you, you might have to pay around $100 for the whole welding-based setup: a small filled tank, (20 or 40 cu ft -- maybe $40-60?), a regulator (maybe $30-40), and a basic mask (maybe $5-10).  If it does work and you want to set up a more optimized system, you'll need at least one larger tank (for home use--you can use the smaller one for portability, in the car for example), maybe a second regulator (so you don't have to use the same one for the big and small tanks), and maybe the better mask that is made for people with CH. All that might add $120-150.  Then you will have to bring in the tanks when they need to be refilled, and there is a cost for the refill plus the cost/hassle of trips to the welding supply place.

When you get medical oxygen from a supplier, you typically have some kind of co-pay (others will have to say what that might be; I just don't know and I think it varies quite a lot). Your payments include a regulator and a basic mask.  Depending on the supplier, you might get a large tank and a smaller tank, and basic regulators for both.  They come to pick up used tanks and replace them.  You might want to spend some extra for a more effective regulator (or regulators) and the better mask.  How things work out with the supplier seems very dependent on the supplier and the delivery people.

You can read more about welding O2 here: https://clusterbusters.org/forums/topic/5627-notes-about-welding-o2/

 

 

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Thank you so much CHfather. Your post is so helpful. I think going medical route will be the best option for me. 

I don't even know that I have CH and don't know if O2 would help so was asking so many questions about the cost. I wish I could just try it out in a doctor's office or something. 

Into Light - I don't have medicare, but it is good to know, because I can be sure that if medicare covers it then my insurance will cover it too!!

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27 minutes ago, graci said:

Thank you so much CHfather. Your post is so helpful. I think going medical route will be the best option for me. 

I don't even know that I have CH and don't know if O2 would help so was asking so many questions about the cost. I wish I could just try it out in a doctor's office or something. 

Into Light - I don't have medicare, but it is good to know, because I can be sure that if medicare covers it then my insurance will cover it too!!

hi @graci,

medicare has only just started to pay for O2. Part of the covid-19 responses. previously they did not. I am trying to get the  bills submitted to the feds rather than continue to self-pay, which was not an egregious amount until the pandemic laid waste to my art nusiness.

i recommend that you check your policy.

lux

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1 hour ago, graci said:

I think going medical route will be the best option for me. 

I am inclined to agree, as long as you can get it reasonably quickly and are not committed beyond a reasonable initial co-pay.

1 hour ago, graci said:

I wish I could just try it out in a doctor's office or something. 

A small possibility . . . Some people have found that EMT stations or firehouses with O2 are willing to let them use it in an emergency. In current circumstances, this might be a lot less likely.  But if you have such a place very nearby and can get there during an attack, it might be possible. Another reservation about this is that O2 is not always very effective on the first couple of uses (though I would said that most of the time it is effective enough that you can tell whether it's helping or not).

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On 4/6/2020 at 11:34 AM, graci said:

I just called my neurologist, and he was hesitant to send a prescription for O2 but he said he will send it. He said he wasn't sure that it was cluster headache, but agreed that it didn't hurt to try. He told me that the insurance might not cover it, so I am waiting to see how mucht the cost will be.

Depends on where you are probably. Im in FL and self-pay Apria $79/month unlimited refills. Make friends with your delivery guy...s/he will be the lifesaver.

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ps rx must be written oxygen 15Lpm for Cluster Headache with the diagnosis code. If the doctor writes higher lpm than 15, and the delivery company has no regulators other than 15lpm (which more than mine don't I rexpect), you may experience, as I did, a refusal to deliver. Just take the 15 lpm rx, then get your own WT Farley regulator. Mine goes to 25 lpm and i need to start with that flow rate and then reduce it to where it keeps the 3-liter Optimask reservoir bag filled.

WT Farley – steel and brass. I think I got mine on Amazon though you can use their website.

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It might sound a dumb question - Is the tank just one time use??

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No. Tanks get refilled and reused, although when a supplier brings you more O2, they bring you a different tank and take the one you have back to be refilled and eventually given to someone else.

Or, if your question is different -- you will use the same tank for multiple aborts. Tanks come in different sizes, holding different amounts of oxygen. The number of uses depends on many factors, including how much O2 is in the tank and how fast you use the O2 that's in the tank (this is called the "flow rate" and it is measured in liters per minute). With a really, really big tank, a person might get five hours of use. With the smaller tank (called an E tank), a person might get something like 30 minutes.

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