Newbie here from Iowa

[Freud]

I’m 16.36 hrs away what time are reservations?

[MoxieGirl]

6 hours ago, Rod H said:

2nd paragraph uni is not in ames. 

Ok, my apologises for the confusion and perhaps a bad translation. "uni" (small letters) is an abbreviation for a "university", in general. This may just be British slang and is used this way: "I went to uni" instead of "I went to university". If that's the case, if it's just a British thing, my bad. I have been writing for a British audience for so long now I sometimes forget my American.

UNI, on the other hand, is short for University of Northern Iowa, which (as you correcntly state) is in Cedar Falls, which I did not attend. 

I went to university in Ames, if that works better for you. 

I do appreciate that people often write in shorthand on the forum, and not everyone adheres to high standards of punctuation and capitalisation, so I get the confusion. But, as a professional writer, I tend to write exactly what I mean and I proofread every post at least 2 or 3 times because my migraines often muddle up the words I type. I've proofread this post 5 times now, just to make sure I'm clear and not being offensive. 

Mox

[Rod H]

It's all good. If your ever back this way the offer stands for hickory park. Call it payback for the mint tea recipe. 

Edited July 15, 2019 by Rod H
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[Jeler]

Moxie

ISU is an excellent school for Engineering, Agriculture, Design and Veterinary . My father inlaw is also a grad of ISU in Engineering and ended up with MIT working on the Apollo! Amazing guy!

My heart still belongs to U of I however and I cheer on ISU  Athletics unless they are playing against the Hawks!

Wish I knew where Hickory Park was? Any clues?

OK, back to CH!  Just got over one of the worst weekends trying to fight the beast off. Wasn't very successful however, last night/early morning I had my Nedi pot attached to my hip, followed by a hot shower before heading into a dark room onto the floor with an ice pack.  Midnight to 8 AM is still a blur to me as of what happened and at what time. Geez!! *amn!

Called and left a message at Neuro just now and asked for MRI/CT Scan and an O2 prescription ! We'll see if they get back to me today!

Take care everyone and have a CH free day!

Jeff

[Rod H]

Hickory park is a landmark restaurant in ames best bbq around. Jeff if you run into o2 problems and your willing to drive I can help.

[Rod H]

Have you tried energy drinks yet?

[Freud]

9 hours ago, Jeler said:

Called and left a message at Neuro just now and asked for MRI/CT Scan and an O2 prescription ! We'll see if they get back to me today!

Since you’re asking make sure you insist the script has the following:

1diagnosis w/ code

2 “oxygen @15-25LPM via NON-REBREATHER mask PRN (as needed)  CH

3. Please supply Pt w/ M tanks and E tanks

 

i put in the tank sizes bc some places require that others automatically give M tanks to CH patients and you need a second script for the smaller portable E tanks. You will probably have to buy your own regulators to get above 15LPM but a few places have the higher flow regs. 

 

Hope this helps, I suggest Apria healthcare. They have been great to me. All CH patients are in an “on call” delivery setup. So you call when you need. I try and give them a day but it has happened that they have come same day. The drivers say the policy is 3M tanks per pt. But I currently have 9. Lol. Every time I called I asked them to put in the notes 4 tanks, then one day they say as usual when hanging up “is there anything else I can do?”  I said yes, could I get 5 tanks?  They put it in the notes and wala I got 5. I call when I get down to 3-4 tanks and reorder 4-5 tanks. If I have half filled tanks or still have a full tank when they come my delivery guys just leave what ever I have left and bring all the new tanks in too. Last week the yard was low on tanks and he only brought 3. Then randomly the door bell rang last night around 7:30pm. It was one of my oxygen guys. He was on call got called out kinda close to my area so he threw 5 more tanks in the truck and brought them over and surprised me!  I’ve had nothing but good things to say about Apria...

Edited July 16, 2019 by Freud

[Jeler]

Freud,

Thanks for the valuable information! Neuro returned my call this morning and I relayed all this info to them you wrote here. O2 order is moving forward now. They are also moving forward to getting a request in to radiology for a brain/head Scan!

Rod,

Never heard of it. Sounds like a great place to eat, even though my diet is a bit restricted now to rule out possible food triggers. I'll let you know if I need help with the O2, thanks so much for the offer.  I have not tried energy drinks as of yet, truth is they kind of scare me to even try one. I will look into it however.

On another side note I did took Melatonin last night, 10mg, to see if it would help me sleep and rid me of CH's waking me up. Beast visited me at 1AM and again at 6 this morning. Felt a bit droggy this morning, but I can handle that. I'm an early riser normally and wake up between 5 & 6 like clock work. Of course I crawl into bed between 9 and 10 each night too. Did feel some relief with 10mg of Melatonin and will try again this evening. 5 hours of sleep is so much better than the 2 hour average I've gotten the last few days.

Have a great day and again "Thank you so much for all the Help"

Jeff

[FunTimes]

Jeler

my name is funtimes and I also am a user of 5hr drinks.. haha

I never had anything like a energy drink prior to my clusters. I read about it here and did not have my oxygen set up yet so I figured I would try. I find the 5hr type drinks, you can use redbull or anything with taurine and caffeine, will slow down the ramp up time of the attack so I have better results using the oxygen when i get to it. I down the drink on my way to the O2. The O2 alone will change the game for you. You can abort an attack in under 20 minutes most times.  I am chronic and have only been playing this game for about 6 or 7 years but prior to this site it was even more of a living hell. I tend to forget that sometimes. You will find all kinds of help here as you already seen. I also do the D3 with the Melatonin at bed time. I also will add Benadryl 3 times a day when things get real bad. 

[CHfather]

1 hour ago, Jeler said:

O2 order is moving forward now.

Suggest you read the whole section on oxygen here: https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/

This is an excerpt that might be particularly relevant in the short run:    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).  A rolling stand is best. 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. 

 

[Jeler]

Funtimes,i

Hello and thanks for the info on energy drinks, I'll look into it some more.

 

CHFather

Again, thanks for the info on O2. I've copied and texted myself the info when I go visit with the supplier.

 

Jeff

[Rod H]

I wouldn't hesitate on the energy drinks. They're cheap they work and you don't need a prescription. Chug one at 1st indication of an attack. They won't keep you up after an attack either.

[Jeler]

Rod H

Thanks for the information. Working at maintaining my Blood Pressure currently and afraid and Energy Drink might be inclined to raise my numbers!

Jeff

Quote

 

 

[Rod H]

I hear ya. The number that I usually pay attention to lowering is the kip scale when in cycle. The rest can wait til the hell is over and I'm a painfree functioning adult again.

[Jeler]

Made it thru another weekend here, barely.  Finally received my prescription for O2! Yeah, it helped tremendously, when ever I felt a CH arriving at thee door steps, I inhaled the O2 at 15 lpm for 10-15 minutes and the beast was turned away. My one problem now is that the only folks in my area that will fill a prescription for CH only supplies E tanks, well you know how fast you can go thru those tanks. 1 tank/day! Damn. I spent some time this morning calling around to medical suppliers and they either don't have the availability of larger tanks or don't supply O2 to patients with CH . My last hope this morning was Apria, mentioned here on the board. They are the ones that told me since insurance will not pay for O2 for CH patients they will not supply it. They also refuse to take $ from an individual, only accept payments via insurance. What  a crock of *hit!  My last resort now is to go down to the supplier of the E tanks and see if I can pick up 4 or 6 E Tanks at once. Had to also personally order my 15-25 lpm regulator via Amazon because the supplier did not have one on hand and told me it might be a week before they can get the correct one. My order on Amazon was here on the next day! Yeah! (FYI-my supplier is NuCara)

Last Thursday my Doc prescribed Emgality for me as well as the O2. Wondering now if anyone has had any luck with this injectable, it was just approved for use on CH. Before hand it was only prescribed for migraines. Now just waiting to go thru on my insurance.  Well that's all for now on my updates. Again, thank you so much for all the help I've received here. I truly appreciate it!

Here's to a pain free day to all.

Jeff

[FunTimes]

My oxygen company told me they did not have or deliver M tanks when I first started out with them. then one day I was expecting them to drop off a M60 tank and they screwed up and gave me a larger M tank. So from that point on I knew how unorganized they were and started ordering what I wanted regardless of what they said they had and sure enough I get it. I figured out that the person taking to order on the phone does not know or care what I order and the driver just wants it off his truck so he does not keep track. I built up a nice stash of all sizes now and thank god I did. A moth or so ago I had a new person answer the phone when I was calling in my order and would not send me all the tanks I needed. she said I was only allowed like 4 e tanks, I was shitting my pants. Well a week went by and I called back and got what I needed again. I know at some point my luck will run out but I keep on stashing tanks away like a squirrel.

Point is.. Keep asking for what you want and someone will give it to you. I find it hard to believe a company will only deal with e tanks and no other size.  

[CHfather]

If you can't get a resolution of the tank situation in any of the ways mentioned here,  you could consider buying (or in some places possibly renting) a big tank from a welding supply place.  You'd also have to buy a regulator online, since the E-tank regulator is different from a welding O2 regulator, so the whole thing would probably set you back something like $200, but you'd know that you have O2 on hand.  Check back or at least carefully read the welding O2 file before you act.

The mask made for people with O2 -- http://www.clusterheadaches.com/ccp8/index.php?app=ecom&ns=prodshow&ref=clustero2kit -- is considered by many to be a very worthwhile purchase.

Emgality in addition to verapamil and D3 regimen will confuse you about what actually helps you, but you might not care about that right now.  D3 regimen with proper initial "loading" will probably help you as much as Emgality would.

 

 

[MoxieGirl]

As a non-oxygen using Clusterhead, can someone explain the different tanks? E? M? etc.

Thanks

[Jeler]

Thanks again everyone for the help. I've done emgality search here all ready. Just looking for more 1st hand experience. I put the pressure on my 02 supplier this morning! They only supply O2 to 2 other people with CH in my area. (their excuse for not having larger tanks)

42 minutes ago, MoxieGirl said:

As a non-oxygen using Clusterhead, can someone explain the different tanks? E? M? etc.

Thanks

Moxiegirl, as always it's nice to hear from you.

This webpage will help you see the difference's in O2 tanks, better than I can explain it.

https://www.tri-medinc.com/page12.htm

Hope all is going well! From one Iowan to another.

Jeff

[Rod H]

You can always buy a welding tank. There huge and Napa will exchange it for a full one just like a propane tank. 

[Freud]

Apria does sell to CH patients and I know some one in FL that pays cash. It’s a national company all standards are the same. How many E tanks did they give you?  What number are you calling for Apria. The toll free number for new patients or the local office?  Some times you have to be persistent with them but if you are on the national line just ask to speak to the managers...  there is no way what they told you is true. 

[jon019]

...yeah...what Freud said...persistence PAYS...I used Lincare (self pay/ins pay/no pay (long story)) and have heard EVERYTHING you describe...so it's really an individual manager thing...go over their head as diplomatically as possible...and get to know the driver/delivery person/back room techs REAL well...not always, but the farther (further?) you get from mgmt. the BETTER chance for care/concern/compassion/SERVICE....…………..

[Freud]

Yea what John said for sure. The delivery guys for Apria here really care and see how much I’m suffering based on how much O2 I’m consuming. Was at 1 M tank a day. Mainly burnt through the tank at night when I’d get hit every 45/60minutes. Take 20-30 min to abort then wash repeat. Now since I get some kind of 2-5hr sleep period. I’m not burning through half as much. In general unless they are dicks the drivers will give out extra tanks. Seems to be a common thread here. I only know one guy who’s O2 guy hates him. Totally due to the fact that he found a place w H tanks. He gets 2 at a time. They are massive!  Guy has to haul it up the porch and up a few stairs. Other than that guy everyone gets incompetent call centers and good service once you get through the red tape w Apria at least. 

[Jeler]

Freud

That's good to know. NuCara gave me 2 E tanks this past Saturday morning. By Monday at 3AM they were empty. Today I went down to exchange them and they told me they were all out so they gave me 3 D Tanks. What a joke I know.

Thanks for the info on Apria, I called the local store, that's when they told me they do not service CH patients. ( I damn near blew a gasket)  Tomorrow I will give the corporate office a call and explain to them my situation.

Thanks for the help and suggestions.

Jeff

[Jeler]

Jon019

Thanks, my call into Lincare this morning they said the only tanks they have are E Tanks also. I call the corporate office there also if I don't get anywhere with Apria.

Thanks for the very use full information.

Have a great evening.

Jeff