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walshy155

My experience with CH

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Hello everybody I'm going to keep this short but I've been a sufferer for 3 years, and have gone through the annoying procedure with doctors saying "Get your eyes checked blah blah", misdiagnosed with migraines and what not and other doctors saying "not much we can do" with me crying in pain trying to talk to them and being asked to explain my symptoms during an attack, luckily one doctor knew what I was going through and I have been given sumatriptan injections, I try my best not to take them though...

My first meeting with the beast was 3 years ago (maybe 4 but I only had 2 attacks that Autumn), my cycles are every Autumn and 3 years ago they lasted for a 2 weeks occurring once a day about 2 hours after I have fallen asleep and they were agonising I've seen the kip scale and I'd say 9, I managed to ride them out which is tough as we all know (the pain was making me think of suicide, but I know after 2 hours it will go).  2 years ago the cycle was similar and lasted about 3 weeks but occurred about 5 in the morning, this year they started about 4 weeks ago and occur like clockwork at 6:45-7 every morning kip 8-9, used a sumatriptan injection and it was bliss, they work good...

Unfortunately since using an injection I have noticed a massive increase in shadows, and what is strange I now get two a day which is almost exactly 12 hours apart so I get one when I'm due to wake up for work which exhausts me and I am pretty much forced to go into work late if I can even go after the battle I've endured in the morning, this makes me depressed as I like many other people need to provide and earn money, what makes me more depressed is my employer isn't exactly taking it seriously as it's almost unheard of, my work mates are calling me a hypochondriac and I feel like my life is falling apart.

I will be asking the doctor for oxygen this week, also my employer wants me to get proof from my doctor that I am fit for work, or face possible disciplinary action. This is making me incredibly anxious and annoyed.

I will be applying for Personal Idependence Payment to make up for my lost earnings. I have never applied for any sort of benefit in my life and have worked since I was 16 now I am almost 23. I enjoy my line of work and take pride in it (fabricator welder) and would be devastated to loose my job and I also have a baby on the way.

My mind is so shot I feel I cannot even write my experience down in a very meaningful manner.

Sadly I feel like this cycle isn't going to end, so is there anything else I can do to keep them at bay? I thought it was going to end when I didn't have an attack for two days but came back in the morning a few days ago like clockwork.

I'd appreciate any advice on busting them, thanks for reading 

Brendan

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There are a few options, I would think LSA seeds may be the way to go for you being that your cycle has started and growing mushrooms takes 3-4months. Some one will chime in that has more experience than me with seeds. I am chronic and constantly farm MM to keep my CH at bay. 

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Brendan,

I'm sorry to read your story.  It sounds a lot like my employer some years ago.  The best thing you can do is work as hard as you can when not getting visits from the beast.  Show them that you're more than worth it to keep on staff.  If you can get detox from any scripted garbage and bust following the tested methods, I'm positive you'll quickly get your life back on track.

The busting method entails taking a threshold dose of any of these hallucinogens (LSA, LSD, Magic Mushrooms).  You need to detox from most dr scripted meds that are proven blockers (Imitrex is the most common).  After a 5 day detox, take a threshold dose (a dose strong enough to feel the effects, but not so strong that you'll visit god.  God doses are normally only needed for those of us with really hard cases of CH).  After your dose you will most likely get what's called Slap Backs.  These are CH attacks that hit at odd times and might be a little harder than your normal hits.  Not to worry, that's just the medicine pissing off your beast.  Wait 5 days and take another threshold dose.  After the second dose most of us have lighter and less frequent hits.  Wait 5 days and take a 3rd threshold dose.  Most of us are pain free after the 3rd dose.

Recap -  3 doses 5 days apart with a 5 day detox period before the first dose.

PFW (pain free wishes)

J

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Busting is a topic I don't know enough about, as I am trying to learn that myself.

However, I have a few tricks I have learned:

OXYGEN is your best friend.   There is no actual difference between welding oxygen and medical oxygen (only the cleanliness of the tank).  Oxygen is your first and best line of defense.  I have found that oxygen will abort an attack almost as fast as an imitrex injection without any of the side effects.  You need,  at a minimum, a flow rate  of15LPM through a non-rebreather mask for 15min. 

When you go to your doctor, make sure s/he specifies the flow rate and non-rebreather mask (the one with the bag on it). 

Much more about oxygen can be found here:

https://ashleyhattle.com/how-to-get-and-use-oxygen-for-clusterheadaches/  (This is a link to the website of a Clusterbusters board member who literally wrote the book on Cluster headaches)  It wouldn't hurt to get the book either, I found it informative and encouraging.

Also, there is a lot of information on this board about oxygen.  Everyone does it a little differently, but most people have great success with it.  A key point is that if it does not work for you at 15 LPM, increase the flow rate and try again.  For me, 15LPM will work, but I do better with 25LPM.   

ENERGY DRINKS are helpful at holding off an attack and are also used in conjunction with oxygen to abort attacks.  The combination of taurine and caffeine is apparently what does the trick.  I used to slug a cup of coffee to hold off an attack, but the caffeine/taurine combo works better. 

Look into the D3 Regimen.  A cluster headache sufferer put this anti-inflammatory regimen together and cured his headaches.  Essentially, it is a bunch of vitamins in conjunction with large doses of vitamin D3.  This forum has a lot of information about the D3 regimen, and Batch (the creator of the regimen) is a very regular contributor to this board and is always willing to personally help.   Many people have a reduction in frequency and severity of their CH using the D3 regimen.

I have those morning hits sometimes too.  It sucks to wake up, go through hell, pop an injection, and then have to go about your day.   Oxygen has made that bearable.  Trex messes with me, makes me drowsy and worthless.  Oxygen does none of this.  I have also been able to drastically cut back the shadows with oxygen as well.  I have recently stopped taking imitrex, and rely solely on O2 and Energy Drinks for aborts. (I still stockpile the injections for a rainy day, however).

Also, there is some evidence that imitrex can make your cycles longer.  When things were really bad I would take imitrex tablets as a preventative (I could prevent an attack for 12 hours with this method).  It sounds like you may be experiencing something similar. 

Most importantly though, we have all been there.  You don't have to put how you feel into words.  Those feelings of despair are (in a way) a symptom of this condition.  You are also suffering from PTSD (we all are).  That helpless feeling you get when you got yet another attack is part of it and there are a lot of people on this board who know exactly what you are going through, and are willing to help.  This simple fact did not keep a cycle at bay, or help abort any attack.  But it gave me some hope that things would get better in the future.

Congratulations on the baby, you have a whole new world to look forward to.   

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 Hi Brendan...welcome....sorry you need to be here....

I think you did an excellent, even chilling  job describing what you are going through....I'm sure it resonates with all of us in the family. Cannot even imagine describing symptoms to anyone during a bad hit. Tho it does remind me of a fervent wish many clusterheads have...and that is to experience a hit IN FRONT of a treating physician...so they can SEE what this crap is like. It would be a true nightmare for THAT to go over their head...…………………………………………………...

Chris already said most of what I was going to say...only better! B)      

OXYGEN OXYGEN OXYGEN!!!!      LIFE CHANGER

...several other thoughts....

Imitrex is frequently reported as causing rebounds and/or affecting cycles negatively. If you get the statdoses, some versions can be split up into lesser dosages. The onboard 6 mg is a real freaking HAMMER dose.... whereas 2-3 mg is sufficient for many....with fewer side effects.  Better yet, it also comes in 6 mg vials (I think still available) where you can draw up (tiny diabetes set) and use exactly the amount that you need...with many more doses than the usual 2-pack stat. Ask your doc to prescribe the vials...or ask the pharmacist to substitute (as one told me: "same drug same price" ). I did not like the "ooky" feel  Imitrex gave me so I switched to Zomig nasal spray (5 mg)….for ME 99% effective, minimal side effects, 18 hr PF "holiday". Same price and no dose splitting...but ya might wanna give it a shot (pun intended)………….

Read this letter titled "Letter to Coworkers" (by Simon). Many find it extremely helpful...only you will know. Bit of a dated format...was the only version I could find right now (is a post from CB sister site: clusterheadaches.com)

http://www.clusterheadaches.com/wwwboard/messages/63158.html

Best

Jon

 

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Me personally...no. Seems they are available.... but were always a task to track down. I would suspect low demand means pharms don't stock...

As of 7/18 manufacturer GSK:  

 https://www.gsksource.com/imitrexinjection

generic manufacturer Hikma (formerly West-Ward Pharmaceutical)

https://www.hikma.com/media/1992/final_hikma-us-injectable_catalog.pdf

here's one site selling generic:

 https://www.healthwarehouse.com/sumatriptan-succinate-6mg-0-5ml-vial-5-pack.html

Best

Jon

info only...no endorsements

Edited by jon019

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Hello everybody, thanks for the helpful and kind replies it means a lot to me, today I went back to the doctors as last night I had two bad attacks which were out of the blue and completely different times to my normal attacks I think it was due to the ibrofen, I have been having shadows pretty much constantly so yesterday I took some ibrofen to see it'll help with them, it worked but I think it just held them off and caused a bad attack when the ibrofen wore off, it was about kip 8/9 luckily it lasted maybe 20 minutes and that is unusual for me, I thought well at least I probably won't have one in the morning and I could go to work nice and happy painfree, but no I had another which was terrible as we all know and lasted half an hour again strange as normal my attacks last 2 to 3 hours.

 

So today I managed to see my doctor and after a good talk which was me basically describing the problems with sumatriptan she then asked me have you heard of oxygen therapy, I was immediately thinking yes I'm getting oxygen so she is writing a letter for the supply of oxygen. But will take about two weeks if I do actually get it.

In the meantime until I hear about the oxygen I'm not sure what method to bust my shadows and attacks with, I have been using caffeine and energy drinks to kill the shadows but after a few hours they come back and after using the energy drink method twice the third one has no effect.

Also I have stripped down my 6mg injections to the vial and needle so I can control how much of a dose I get if I decide I can't take it no more and use one, a question is would it be okay to use the same needle 3 times (2mg dose) and clean it with a lighter flame or water etc? Inbetween doses.

I'm now happier that I'm most likely going to have oxygen soon, it was a relief when the doctor asked have you heard of oxygen therapy.

If using the psychedelic method what could I do to abort attacks as I could not use the sumatriptan as I read it would ruin the whole point of the the psychedelic method and could possibly cause serotonin syndrome?

Thanks everybody!

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If for some reason your insurance puts up a fight many people here have or still use welding oxygen. You have to buy the regulator on line but the insurance company isn’t the end all be all. 

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You could very quickly set up a temporary oxygen system using welding oxygen for something like $100.  Many people use welding O2.  You'd have to get a tank from a welding supply store and order a regulator and mask online.  If you can get to a welding supply store right away, the time the whole process would take would just depend on how quickly you can get the regulator and mask.  If you want more info about this, just ask.  (I have the sense that you might not be in the US. I'm not sure if it's as simple as I've said in other places.)

[Edit: Crossed posts with Freud here.]

Edited by CHfather

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...i'm not following.....a script faxed or carried to the o2 shop and yur walkin out minutes later with green headed buddies...they be used to "urgent" need in the first place

...don't let ANYBODY tell you they need a respiratory referral/evaluation.....waste of time different disease....you may have to dig up med code for ch which will refer to the manual and all the allied "approved" treatments...of which O2 is one and even primary (yur docs office should be ALL OVER this)……………

...and oh, I forgot, yur a welder so ya got O2 up the butt or around the corner....a tank, a crescent wrench,  a plastic bag and yur ONLINE......NOW

Edited by jon019

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Brendan,

You're more than likely vitamin D3 deficient and that deficiency is contributing to the frequency, severity and duration of your CH.  You need the lab test of your serum 25(OH)D.  This is the serum level metabolite of vitamin D3 that's used to measure its status. The normal reference range for the 25(OH)D lab test is 30 to 100 ng/mL. As CHers, we need to keep our serum 25(OH)D up around 80 ng/mL and sometimes higher to prevent CH or significantly reduce its frequency.  Unfortunately most physicians will interpret the result of this lab test as normal with a 25(OH)D serum concentration as low as 31 ng/mL.  Accordingly, it's important you see the actual 25(OH)D serum concentration results.

Download a copy of the anti-inflammatory regimen CH preventative treatment protocol from the following link and take a copy along for your next visit with your doctors to discuss and to ask for the 25(OH)D lab test.

http://www.vitamindwiki.com/tiki-download_wiki_attachment.php?attId=7708

When your 25(OH)D lab results come back at or below 30 ng/mL (75 nmol/L), the next step is starting the anti-inflammatory regimen per the link above.

Take care and please keep us posted.

V/R, Batch

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Hi Batch, I have recently had a few blood tests and was found to be folate deficient, this may seem stupid but would my work keep vitamin d levels up as I do get a lot of exposure from UV radiation from welding? 

Also basically my doctor said she has to write a letter to a specialist to get approval to supply me oxygen which may or may not happen, I'm in the UK and have heard it's a pain to get it, I'm going to buy some welding oxygen and a rebreather in the meantime, I might get a discount being a welder after all, as for tonight I'm going to try tough it out, I don't know how people with it chronically cope, I take my hat off to them .

Have a good night everybody 

 

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