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Cluster Headache Help and Support >> Cluster Headache Specific >> Worried
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Message started by Captain Cluster Head on Aug 15th, 2011 at 3:16pm

Title: Worried
Post by Captain Cluster Head on Aug 15th, 2011 at 3:16pm
Im really becoming worried about using these nasal sprays (zolmitriptan), im having to use them everyday now , my cycle is at full wack , im getting 8-10 k hits in the afternoon at work and then at about 3am in the morning ,ive sufferd 15 years without any medication or knowledge on ch's ,and now i have these little sprays that get rid of the pain in about 10 mins ,its truly life changing .Trouble is im worried about what they are doing to my body ? something that is changing the size of veins in your head is quite a powerfull medicine imo ?  Im not feeling any side effects off them atall yet ,and im keeping to the daily dosage allowance of 10mg,no more than 2 sprays in a 24hr period , i just cant help wandering what damage they might be doing to me , ive only been using them just over a week and allready i couldnt bare to be without 1 in my pocket .
should i try to ride the next ch out ? without any med ? not sure if i could face doing that again . :-/
does anyone else worry about using the medicines or am i being paranoid ?   

Title: Re: Worried
Post by Brew on Aug 15th, 2011 at 3:25pm
You think those puppies work fast? You should try hyperventilating with pure oxygen. I usually achieve relief in 3-5 minutes. With no adverse side-effects whatsoever.

Title: Re: Worried
Post by Captain Cluster Head on Aug 15th, 2011 at 3:36pm
yeah im seeing a specialist in 2 weeks wich will hopefully put me on the step towards getting oxegeon , but for now these nasal sprays are all i have , i wasnt really given any advice or instructions on how often i should use them , i was prescribed them and told that they would help , and not to exceed the stated dose ,when i revisted the doctor i told her they worked brilliantly and i wanted some more ( you only get 6 per prescription ) and she put them on repeat prescription for me , she never said anything about using to many or anything .?

Title: Re: Worried
Post by Bob Johnson on Aug 15th, 2011 at 7:53pm
Doesn't it seem reasonable that if there was such danger in using these meds that you would be reading about it here?

Title: Re: Worried
Post by bejeeber on Aug 15th, 2011 at 8:08pm
Hi Cap'n,

Sorry, I haven't tried Zomig myself and don't know much about it.

One thing you could consider is that many here don't wait around for no stinkin' doctor to grant them a prescription for O2 - they just go get the same stuff without prescription at a welding supply place.

Title: Re: Worried
Post by LasVegas on Aug 15th, 2011 at 9:29pm
Have you started the natural regimen that many CH'ers here have reported success?  If you haven't read it yet, read the post titled "123 days..."

Nasal sprays can be helpful in times that O2 is not available, however injections work better IMHO.  Like most drugs; they are costly, one is limited on how much you can ingest daily and overall could be harmful as it is a drug with side effects.

It is highly suggested by most CH'ers here that abortive meds such as trex should be used secondary to O2 which is most effective aborting attacks and less expensive than any med. 

Lastly, have you started a preventative med?  If so, what are you taking and at what dosages? 

We are here for your support.  PF wishes to you.

Title: Re: Worried
Post by Captain Cluster Head on Aug 16th, 2011 at 7:00pm
I had to come home from work today  :-[ ...going through hell today , had to go through the embarassment of a 10k ha at work infront of collegues , no where to go prvt ,everyone asking whats wrong with me , no fresh air ,no dignity and to make it worse the nasal spray failed to work for the first time , and i couldnt get any relief from the little ways ive learnt over the years , nothing would stop it .ended up going home .had to drive whilst in absolute agony , it was horrific .
It was like the HA had changed , it was the same pain in the same places,but more intense, usualy whilst im having a HA ,the pain is like a throbbing with a a few seconds in between each throb ,but this time there was hardly any time between each throb of pain, if you know what i mean ?and  nothing i usually do helped atall ,it was allmost like the nasal spray somehow made it worse , the actual HA lasted well over 3 hrs with no relief and  since then ive still got a small shadow like pain ,(it feels like the thick head of a hangover headache from to much alcohol)  that just wont clear.
I cant wait to get o2 , and i cant wait for this shitty cycle of hell to end , i went about a year last time pain free .

Title: Re: Worried
Post by LasVegas on Aug 16th, 2011 at 8:59pm
Captain CH...you had a very difficult day and you survived, you are still around reading this.  So this excruciating pain is not going to kill you.  Nor is the nasal sprays that you have concerns of, providing you don;t take more than prescribed.

RE: Your situation at work today...i've been there, done that on more than 1 occasion, and it is horrific every time, I 100% empathize and would not wish it on anybody even my worst enemy.

Losing dignity is definitely a burden on its own.  The embarrassment of colleagues talking about you, printing fingers, whispers behind your back, coming up to you and asking questions of what happened yesterday, etc is something you will have to stay strong dealing with.

The letter to employer is helpful that briefly explains what you are going through, might want to print and pass it out, might not, obviously a personal choice at your discretion.

You mentioned you can't wait to get O2, what are you waiting on a doctors appt in 2 weeks?  Please understand that the O2 you will find relief from and the imitrex nasal sprays that you have a limited supply of are both abortive treatments.  You truly need a transitional treatment to provide temporary relief while your preventative med is in the slow process (2 weeks or so on average) of becoming effective.

FYI....welders O2 can be purchased without a script.  You can also purchase a high demand valve and non-rebreather mask without a prescription. 

Obtaining proper treatment for O2 from a doctor may be a challenge and there is a detailed outline on this website of how to obtain a prescription for O2.  Do yourself a favor and pay extra attention to detail of what is written as 1 missing link may be the difference of your pain level and impact your overall treatment/remedy. 

i.e.  You must use a non-rebreather mask, not anything else. 

You must have the ability to hyperventilate which can only be done with high flow valve. 

You should stay on the O2 for 5 minutes sometime longer after you abort the attack.  Etc., etc.

It also will be untimely to wait 2 weeks as you wrote for a doctors appt, followed by a wait for insurance authorization and then a wait for O2 vendor availability/delivery, so you may consider this alternative way (welders O2) to obtain treatment on your own fast (same day/next day) without all the red tape.

Beside the Imitrex nasal sprays you have...ice packs, a bag of frozen peas, energy drinks such as RedBull or Monster (1000 MG of Taurine mixed with caffeine) might each/all help you with relief.  But your cycle will most likely drag on for several weeks and being hit everyday can be minimized and possibly eliminated by an effective treatment plan with preventative therapy.

RE: Your most recent posting today, I understand you were venting and rightfully so, as this is the place where others truly understand your living nightmare, but truly want to be of assistance for you so I will ask again....

1. Have you started the natural regimen that many CH'ers here have reported success?  If you haven't read it yet, read the post titled "123 days..."

2. Have you started a transitional med and/or preventative med?  If so, what are you taking and at what dosages? 

Your doctor visit may be 2 weeks away, but keep in mind that there are plenty of resources available on this site, current and archived topics, plus the ability to PM and email others and also post/reply.

We are here for your support and you are not alone.  Hang in there, you will get through this  ;)


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