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sontye

4 years and still going

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Hi,

I currently am medication free outside of going to go get botox injections on my own accord.  I tried oxygen and it was not prescribed properly and my insurance also will not cover for me to have it.  I randomly decided to try botox and for what it's worth it does dull the pain down to a 9 from an "oh my god just knock me out" level.  My bouts range from 30 minutes to 3 1/2 hours (or more) the later includes vomiting and wanting to shoot myself (which I wouldn't do but if someone would knock me out I would be grateful at that point). 

I was on Verapamil (with hesitation from the Doc) and prednisone (which turned my beautiful smile a lovely tinge of yellow).  I was also put on a lot of other things, went through CT's, MRI's, etc. etc. prior to the docs finally figuring out that I had CH.  I like my beer so when I get my bouts I have to say goodbye to that for at least 6 weeks and then I get a break of about 8 weeks and then they are back on again.

I guess I just wanted to reach out, for the first time, to someone who understands my anxiety, and confusion.  I feel bad for my family members that have to see me endure this.  I am a woman so I always feel like I am a burden when this is happening (okay, I am not boohooing here I'm just old fashioned and I take care of most of the family, chores, etc. with a very big smile because it is what I love to do) and I feel I am supposed to be stronger than this "headache", which kicks my a** literally.  I am exhausted afterwards and can't get up to make dinner or do my normal thing.  I feel like I've been run over by a truck for half the day the next day.

When I first got these it was from nowhere.  I have had them now a little over 4 years and am somewhat used to them and my pattern.  They have become the norm for everyone around me.  I say "ok bustin' out" and off I go to some spot to endure whatever it decides to provide (my pain level is usually never lower than an 8-9).  I am a very outdoor person and very social so often times I am not in the comfort of my own home.  I choose not to allow CH to stop me except for the minutes/hours it takes to get through one.  I am also a night CH sufferer, usually about 30 minutes after I go to sleep but there are a few day time episodes here and there (scared the crud out of my co-workers one afternoon, that was embarrassing!!!).

I have become very good at breathing exercises, which help a lot in the beginning until it gets in my teeth then I am a wreck.

I guess where I am going here is thanks for letting me vent.  Everyone around me is hugely supportive but no one knows what this is and how much it hurts and how anxious it makes you knowing when whatever o'clock rolls around and here we go.  Anyways, I digress...here's wishing you pain free days and less anxious times.

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sontye, I gotta ask a few questions.

Did you stop taking verapamil because it wasn't helping, or because of side effects? (Because it often doesn't help much until you get to considerably higher levels than most doctors prescribe, but it can help a lot when the levels are right.)

Are you willing to try the vitamin D3 regimen that has helped very large numbers of people with CH?  Helps prevent cycles, prevent attacks, and make attacks less severe.  https://clusterbusters.org/forums/topic/1308-d3-regimen/

If you're not willing to fight your insurance for O2 (federally funded insurance, such as Medicare and Medicaid won't fund it), are you able/willing to set up a system based on welding oxygen?  Having O2 is such game-changer.

Have you ever used injectable or nasal-spray sumatriptan? 

Have you looked at the materials on busting in the numbered files in the ClusterBuster Files section of this board?  Not for everyone, but often makes a very big difference for shortening cycles?

Here's some info about a bunch of things people do:

Caffeine/taurine. For some people, caffeine alone can help to stop an attack or lessen the severity of the attack. Some folks keep strong coffee on hand for that purpose. Some folks use caffeine pills.  Because some ingredient in energy beverages in addition to caffeine is believed to help with attacks (believed to be taurine), many people use those. I recommend energy shots (such as 5-Hour Energy) at first sign of an attack. Shots are quick to drink down and they have more caffeine than energy drinks, such as RedBull, that are much larger. Many people say the shots work best for them when they are as cold as possible. For many people, energy shots/drinks don’t keep them up even if they drink them at night. Some people take taurine pills along with caffeine pills.

In addition to all the “standard” energy beverages, some people like “V-8+Energy” drinks: https://www.campbells.com/v8/products/  There is a list here of the amount of caffeine in different beverages: https://www.caffeineinformer.com/the-caffeine-database

“Brain freeze.” You can drink ice water through a straw aimed at the roof of your mouth, with the objective of creating “brain freeze,” or hold something cold, such as frozen juice concentrate, against the roof of your mouth.

Melatonin at bedtime. Melatonin is depleted in people with CH during their cycles. Some people find that it helps to supplement it. You could start with about 10mg, and go up or down as appropriate. Some people get into the high 20mgs, or even low 30s, before they reach a level that helps. Needless to say, you have to find what works without making you dysfunctionally groggy. Not wise to take both melatonin and Benadryl at night (see Benadryl entry below).

Feet in very hot bathtub. There’s a theory that this moves blood from your head to other parts of your body. Some people find that putting their hands in very hot water also has an effect on attacks. People have reported that going from feet in a hot bathtub to a cool room and back to the hot bathtub helps the effect. Some people don’t just stand in a very hot bath but will sit or lay in the hot water.

Ice packs. Help some people.

Benadryl. Allergy-related conditions seem to flare up CH. Some people take Benadryl, 25 mg every 4 hours and 50 mg at night. As tolerated. Not at night if you are also using melatonin. Probably if you are trying Benadryl, you might skip the melatonin. Other anti-allergy medicines, such as Claritin, seem to help some people.

Cold air. One study showed that inhaling cold air was nearly as effective as using oxygen. Air conditioning vents in the home or the car are good for this. If it’s cold outside where you are, you could try that.

Vigorous exercise. Some people find that vigorous exercise (running; doing jumping jacks, etc.) will stop or slow down a CH attack.

Lime/baking soda. One fellow said that this helped his attacks: the juice of a lime or two along with a teaspoon of baking soda in a cup of filtered (non-tap) water.

 

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Welcome sontye! I see that CHF has given you a great start with suggestions. One I will add is that since you are nocturnal, as am I , sleeping in a recliner helps. Just grab some pillows and crank back the recliner till you are comfy. Keep your head above your heart. Will you still get hit? Maybe. Will it be as bad? Not likely - you wake sooner. Others will put pillows on a table and use that method.

Yes, breathing exercises can also help. Especially if you are caught out in public. The main idea is to get rid of the NO2 in your lungs. So, exhale fully, like a breathing test with a crunch at end it possible. Then inhale deep and hold that for a bit. Up to even 30 seconds. Then big exhale and repeat. Then just breath deep in and out rhythmically for the duration of the pain or until you to to a safe place. Cold air does work best.

If you go with energy shots, you can always have some in the car. Same with coffee. Works best if taken at the very beginning.

I strongly suggest that you read up on the D3 Regimen and try it. Just healthy vitamins and it can really make a huge difference. Lower pain level, shorter hits, or complete remission. Not bad at all.

I am the 'lady' (term used rather loosely) of the house too. My husband was determined to 'help' for the first year. That was rough. He finally understood that he was not able to help in any way except to get out of my way. Don't ask, don't offer, don't do anything that requires a response from me - it all makes the pain worse. Just make sure that there is O2 in my tank!!! I use welding O2 BTW. No, no, no says insurance. So, you go around and get the best abortive available at you local welding supply. Yes, it is safe. 

Yes, it is worrisome when you feel that you are letting your family down. But you are not! Look at it this way - You are appreciative that they can and do help out. They are glad to have something that they can do to help ease your suffering. It strengthens a lot of families when they work together with this mess. I am so happy to read that they are supportive!!! Some are not. There is no way for them to know our pain and I am glad they do not. Just be my support group. Sounds like a great little group at your house! :)

ATB

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Hi,

Thank you for responding to me I really appreciate this!!!

Some background, I was on verapamil time released 250 twice a day it took about 2 days to work, along with the prednisone I think it was 5mgs a few times a day.  I stopped because the cost was crazy and I am a regular jane worker with paycheck to paycheck income so 290 dollars for the verapamil and then the prednisone and the rental of the oxygen and mask and yadda yadda, plus the neurologist monthly to get the scrip at 45 dollars a pop for a "specialist" and always feeling poo pooed when calling the office to try to get it filled without having to go in...nope gotta come in...and the doc is 2 hours away.  I know it almost sounds self destructive to stop but in weighing how well does it work compared to when I do it on my own it really was about the same so medication free (debt free) is working about the same.  So I am all game for other alternatives here.

I have found drinking red bulls has helped me never really realized the ingredients in there but I think the taurine part is in there.  caffeine is helpful I chug a mountain dew. So I will look into the pills.

I am hoping this responds to both posts?  I guess I will see.  I will for sure try the v8 energy drink.

Cold air actually triggers me to have a worse attack...I have tried it...Hot compress on my necks seems to help some, hot shower only if I am not full blown in it.  I will try my hands and feet though.  I have become more aware of when an attack is coming so I do sit up, this does help a lot.

I try to get up and move but, for some reason my attacks take my legs away...I can not walk well at all I can barely form words and the next day my tongue stays swollen so I actually slur some for a while.  The gland under my tongue gets huge that is one of my "hey it's coming" notifications from my body.  

I have copied and pasted this on a paper so i can try some of these things, I am in a cycle now so I am excited for something to work additional...I thank you very much for this!!!!!!  Really as I type with tears in my eyes, really thank you!!  I will read up on the D3 and everything you all put here.  I have been following this site for a while, I was afraid to write anything so i am glad I did.  Again Thank you!!!

My family is awesome, they don't understand but they are awesome, you are right I am very lucky for that.  My husband does the same he walks or carries me to where I need to go brings me the toilet paper to blow my ever running nose and eye and asks if I need anything else, then quietly steps away and keeps others from coming to my "aide" as he knows there is nothing to be done.

With much appriciation

-Sontye

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Me again,

 

I meant to ask about the welding oxygen.  Could you please advise on that as well.  i stopped because of the cost. 

Also history wise...I have never had an attack that was shorter than an hour...my usual is 1 or more hours and if I do get a short one...I will then have another not shortly after the relief happens from the first (at most a half hour between).  The longest one I had was 4 1/2 hours and it was really bad.  I used to keep a log, probably for the first year and a half...i have since stopped looking at the clock or writing it down...seemed to me that all that produced for me was more anxiety, crying, anticipating etc.  When i start a cycle it picks the time and stays with it for the most part, but almost always at night.  i have had 2 cycles that switched me to days (having my druthers I prefer the nights, I am not in front of as many people).

Thanks

Sontye

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28 minutes ago, sontye said:

I meant to ask about the welding oxygen.  Could you please advise on that as well. 

An initial welding oxygen setup will cost you ~$250, depending on what size tank you get and what you are charged for it (prices vary a lot from place to place).  You'll want to buy a mask (<$10 to about $30, depending on whether you get a standard non-breather mask or the mask that's made for CH) and a regulator (~$50), and you need a big adjustable wrench.  You get the tank from any welding supply store (you can find the stores through google).  We can walk you through more specifics (where to get a mask and regulator; what to say and not say when buying the tank). Let us know if you want more info.

39 minutes ago, sontye said:

the prednisone I think it was 5mgs a few times a day . . . 290 dollars for the verapamil and then the prednisone and the rental of the oxygen and mask and yadda yadda

Prednisone for CH is usually prescribed as a taper, where you start with a fairly high dose (could be up to 60mg/day, but probably not that high in your case) and then take lower doses over the course of two or three weeks.  That sounds to me like a lot of $ for verapamil + pred. O2 can add up.  

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Question regarding the oxygen, I am presuming that it is just regular oxygen, i mean what's the difference breathing that compared to what they offer at medical grade...can't imagine it's any worse than being in the city?  Thank you for that information.

The prednisone was not too high for the whole time and then the doc would tell me to just stop after.  I would taper only because I was afraid of side effects, I did not like taking it because of the side effects.  I was affected by taking it.  This was one of the reasons I decided to just see what I could do as naturally as possible and make it through.   

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sontye,

You can find all sides to the question of how pure welding O2 is compared to medical O2, from it's purer to it's the same stuff to it's not as pure.  I only know that maybe 15 - 20 percent of people with CH use welding O2, and of the people we know of directly, none has reported having an issue.  My daughter (the person in my family with CH) has used it for almost ten years now. 

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CHfather...Thank you for all the assistance, I thank you very much.  This has been really helpful to me and I will see what I can do regarding the o2 I know it is a great tool for me, I just gave up because of the doc and frustration.  I am glad your daughter has a family member like yourself and I know I say it a lot (but I only say what I mean) you are appreciated!

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Meds: That makes a lot of sense to me. We have members who are on a whole cocktail of drugs and still in pain. Which is ridiculous. But, with the pain being so bad, they continue the drugs.

And your doctors office is horrible to make you come in monthly to get renewals!!!! You are not taking pain meds after all. What a racket.

I use the V8 Energy drinks. Love them. I can't take energy drinks or shots - they hit that return to sender button in my tummy and out they go!! And I use caffeine pills too.

Suggestion - I take caffeine preemptively. I expect a hit at 8pm, so I take caffeine at 6pm-7pm. No 8 o'clock hit. The 10:30pm one will still come, but I do get some sleep that way.  You might try it.

I am going to push you to get the vitamins for the D3 Regimen. Not expensive and very helpful. I think that you will be pleasantly surprised! It really does make this more bearable even if you don't get pain free from it - slower ramp up and lower intensity hits when they come. Well worth the effort!!!

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G'mornin Sontye and welcome to the community!!

Looks like Spiny and Chf have covered all the bases for you but I'll chime in on the weld ox work around......I've been using it for almost 10 years with no I'll effects......you just can't let the welding supply know you intend to breathe it!!

 

Dallas Denny 

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Hello and thank you for the welcome,

I figured the o2 was like that.  I actually have some in the shed (I do not know how old it is though, we do weld I just never considered it).

Neuro - yes nice guy but straight racquet said because I really didn't have high blood pressure has to monitor the verapamil for some reason?  IDK I just decided, I am living with this CH it's got a life of it's own and I want to do what I can to manage what I can and not be so anxious.  I have even come to terms that "this is going to hurt here we go" the first few years I just cried and tried to fight it, relaxing (as best you can in that pain) seems to help a tiny bit physically but mentally it really helps me deal because I can't make it stop so accepting has to be part of it for me.  And for the folks that take the meds I hope that gives them some sort of relief I really do it just wasn't much different for me from the natural and the pharma.  My kidneys started to fail my numbers dropped huge so I stopped, dialysis and ch hell no!!

D3 - I printed it out and I am definitely trying it.  I will see how it does for me.  I am also trying the benadryl.  V8 helped some last night.  I will try it beforehand as well as you suggest.  I printed it out.

Question...do you all experience the day after forgetfulness underwater type feeling?  I was just wondering if that was just a thing I encounter or if it is a shared experience.  

 

Thanks,

Sontye

 

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Apologies,

 

I forgot one more question.

My cycle is 4 times a year I'm usually 6 weeks on and about 8 weeks off (I think).  Like I said I used to keep a log, after 2 years I stopped.

With the d3 do I only do it when I am starting into a cycle or do I just do it all year?

 

Thanks!

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With a cycle schdule like that, I would definitely recommend staying on it year round.....it takes a while to elevate your D3 levels to the 80 to 85 ng/ml "sweet spot" where most folks get relief.....if not complete cessation, most report fewer, less intense hits!!

DD

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I stay on it year round. And I recommend that others do the same.

The first time I had my D3 checked, it was under 40 and that was after being in the sun all summer gardening!

If you already have a welding set up, you must have a regulator on it. That would save the expense of buying one now. You can use a that one and just open it enough to supply the O2 you need. It does not matter how many liters per minute, it just matters that you can get enough O2 and adjust the flow. ;)  I sucked O2 through the torch tip covered with a wash cloth for months until I got set up in the house.

ATB

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sontye,

What spiny said, and . . . here's a link to the mask made for CH: http://www.clusterheadaches.com/ccp8/    You can also get a basic NON-REBREATHER mask for < $10 at the usual internet sites (amazon, ebay, etc.).  You can buy an adapter so the tubing for a mask fits more easily onto the outlet from your welding regulator.  I'm told they are sold in hardware stores: here's an example: https://www.amazon.com/Nipple-Nut-standard-D-I-S-S-concentrators-Each/dp/B000GHUNVS/ref=sr_1_1_a_it?ie=UTF8&qid=1519355238&sr=8-1&keywords=barbed+adapter+oxygen

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Dallas, Spiny, CHfather:

Thank you!  I will get the regulator/non-rebreather I'll see what I can get my hands on.  Thank you for the strings and the d3 info buying everything today, I have some of it so will start and also ask my primary to pull my blood to see where I am to start with.

Again I can't thank you all enough this has been a really good experience for me and I hope it's ok that i may be throwing a few more questions out there as time goes by.

Thanks!!

Sontye

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Updating...I have been using the d and the energy drinks.  The 5 hour shot energy drinks have made a world of difference and I am getting into taking the d regimen...so far and I am deep into my cycle...I normally last 1-3 hours with these on board I have been under an hour with every attack holy cow it's been amazing!  I am so elated with this I can't thank you enough for the extra time on my life with all your help, thank you all so very much!!!!!!!!!!  Still working on everything else (moneywise and yadda yadda).

-Sontye

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Thank you CHfather,

I am for sure still moving forward to get the oxygen...I would love to see it down to 15 minutes that would be a game changer.

 

Thank you,

Sontye

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I would just like to add...to the always pertinent, consistent, and delightful support from CHf. O2 should be the first resort provided to ANY clusterhead...from ANY physician....and I don't care what their "training". The literature is OVERWHELMED by the evidence for its efficacy!!! Myself....I would estimate over 5000 hits aborted by OXYGEN (that may be a low estimate). My sanity...maybe my LIFE....owed to a few green headed tanks..... a proper non-rebreather mask...well defined technique....and folks like you will find here and at ch.com.......................................

Best

Jon

 

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