Feel like going crazy with these headaches

[Delightfu11debs]

Feel like going crazy with these headaches . No sleep exhausted . Cnt function all the time at home or at work .. Absolutely petrified and waiting for the next attack drives me crazy aswell I just want a good nights sleep im pleased I found this site now I know I'm

Not alone in this cause no one fully understands the extent of this it's as though people think I over do it ppffttt I wish . Has any one actually had anything that has worked for them ?

[sierra]

Welcome Debs, let's start with...have you seen a neurologist, if so, what was the diagnosis and suggested treatment. This place is a great resource for those who suffer with CH but we need to know a little more about your situation and how you are being treated. Please poke around the site for a while, read some of the threads that sound similar to your situation and some of the files on oxygen use and procurement. 

 

Please post again with some info on how long you have had CH, is it a seasonal thing, did it just start etc. I am a rookie at trying to help others but there are plenty of folks here who have a far better understanding of CH and it's treatment than any doctor I have ever met. You will find help here, I did about 18 months ago when I was in a very dark place with chronic CH and they saved my butt.

 

Sierra

[CHfather]

The oxygen file is here: https://clusterbusters.org/oxygen-information/  Oxygen is by far the most important thing for you to have for aborting your attacks.  A doctor can and should prescribe this.

The first two documents here will give you a sense of what's available for pharmaceutical treatments: https://clusterbusters.org/medical-research-reports-studies-case-reports-links/     Typically, the most effective pharma treatments are verapamil for prevention, a steroid taper to end a cycle, and injected Imitrex as a backup abortive to the oxygen.

Seriously consider starting this right away: https://clusterbusters.org/forums/topic/1308-d3-regimen/

Try an energy shot (5-Hour Energy, for example) at the first sign of an attack.

Most people here find "busting" to be highly effective.  Read about that in the numbered files in the ClusterBuster Files section.

Much, much more . . . Please follow Sierra's advice -- tell us more and stick around!

[ChrisSelf]

I'm two days into vitamin d regimen and oxygen.

I've tried a lot of things over the years, but so far so good. Track down batch's vitamin d articles and give it a shot.

And give oxygen a shot. I have a thread and chfather posted some videos on proper breathing. It makes a big difference. I tried oxygen years ago and didn't stick with it because I was doing it wrong.

Keep trying because the answer for your headaches is out there somewhere.

[Delightfu11debs]

I had these for about ten years now on and off come every two years last episode lasted six months this started again five weeks ago Iv had oxygen didn't work for me . Differnt sumatriptan tables . Injections they work for the one episode but doesn't last seen a neurologist two days ago give me steroids for a week I'm currently using the nasal spray which helps a bit with the breathing technic I do but having six attacks a day is exausting and I get the shadow headache after the attacks stop which is annoying wish they would just not come back at all

[CHfather]

'debs, I'm willing to bet that we have had at least 50 people here who have said that oxygen didn't work for them.  In at least 90% of those cases, having the right oxygen setup and using it right changed everything.  I would really strongly suggest that you read the file I linked you to before -- this one: https://clusterbusters.org/oxygen-information/-- to be sure you had the right setup and were using it right.  You can dramatically change your relationship to CH when O2 works for you.  

 

I suggested some other things to you in my post above -- D3, energy shots . . . -- and I'd strongly urge you to try them.  If you're at the start of a potentially long cycle like your last one, the D3 can help you a lot.

 

I'm hoping the steroid taper will help.  A week is a pretty short time for a CH taper. 10 days to three weeks is more common. If that doesn't resolve your CH, verapamil is the most commonly prescribed preventive.

[spiny]

Hi Debs.

 

Read, read, and read some more. The D3 Regimen is easy to start and can have some fantastic results. Vitamins - who would have thought.

 

Using your O2 properly is the only way to make it work for most people. Grab some caffeine at the first sign of a hit. If you currently have O2 and have gotten an idea of how to do it properly hit it hard as soon as you chug some energy drink or coffee. Both should be a big help. O2 kills one hit. It does not prevent the next regularly scheduled attack. But, it will give you some rest and PF time in between.

 

Ginger can help eliminate 'shadows'. Some use tea. I use Ginger Chews as they are very portable and fit in a pocket. Melatonin at night also helps a lot of people. Start out with 3-9mg and work up till it helps. 20mg is my magic number. 

 

ATB

[Bejeeber]

Hi Debs,

 

Yep it's unfortunately still typical for us CH'ers to be prescribed a weak and ineffective version of O2. Once you graduate to high flow 100% O2 though, it can be very effective.

 

Also very common is the sentiment upon first landing here of being pleased to find others who understand. That sentiment often quickly gives way to one of being REALLY pleased to find out about game changing non-toxic treatments. For instance busting, which I and countless other CH'ers have deployed and have been able to prevent entire cycles with.

[Bejeeber]

Here's a National Geographic segment which covers busting and features one of our forum members:

 

http://channel.nationalgeographic.com/drugs-inc/videos/magic-mushroom-medicine/

[Delightfu11debs]

Thanks for your replies I'm back at docs on Monday see where i go from there I will try other things and I'll read more up on the things you have suggested neurologist that I seen 2 years ago also suggested me taking some tablet every day for life to stop these coming back I was reluctant because I dnt even like taking paracetamol but I guess mayb that could be a good idea rather than having these ever again but also try these others that has been suggested also before I committ myself to permanently using some thing for life

[Delightfu11debs]

Thanks chfarther u been a great help I'm reading more about these ch on here having a more understanding of what I should do Iv also learned I will not let my doctor or any one else fob me off any more either . I rang my doctor on Thursday as Iv been using zomig for the past two days and he was pretty much reluctant to give me any more I ended up in a bit of a battle with him I demanded I had them as it worked for the fist night and I just wanted to make sure I had more in my possession to help me get through this also with the steroid tablets the neurologist give me Iv not had no pain for the last two days ( fingers crossed ) in the past I popped I dnt no how many pills at once in one go codiene . Tramadol . Paracetamol anything that would basically knock me out when I think about it now I could of done some damage to myself .. It's annoying when doctors really just don't care about what your going through. As you no these pains are horrific itching I have encountered in my life .. I just want my life back taking time off work which I never do . I live in my own with two small children and when the attacks come I have to go in my bedroom out the way of my kids cause u see they are scared and confused and want to help me bless there cotton socks I hope some of these thing might help aswell in pleased I have found this sight makes m feel as though I'm not alone anymore so a big thank you to you's all x

[CHfather]

Zomig is often effective. I'm glad it helps you!  Injections (Imitrex) are even more effective. You do have to be careful how much you use of the Zomig or the Imitrex, but you should get enough to use it once or twice a day.  Insurance companies are very stingy about those drugs, and they are expensive. 

 

Please try really hard to get oxygen from your doctor on Monday, and please try the vitamin D3 regimen.  Those can make a very big difference.

 

I'm sorry to say that there is no pill you can take every day to prevent CH from coming back.  But many people do take Verapamil every day, and for some people it can be a very effective preventive, at least for a time.  Like any drug, it has side effects that need to be monitored, and long-term use is surely not good for you.  The Vitamin D3 approach seems to be more effective as a preventive, with probably a lot less side effects (if any).  It's a lot of pills to take every day, but they're pills that are good for you.

 

The things that people have to endure with CH are horrible.  Two small kids, trying to keep a job . . . we can all understand how incredibly difficult that is for you. The pain itself is bad enough.  Don't blame you for taking whatever you could get to try to knock yourself out.  But stick with this, stick with us.  We'll help you get to a better place.

 

Fingers crossed along with you.  Do you have some 5-Hour Energy drinks on hand?  They can be quite helpful to abort an attack or make it less severe.

[Delightfu11debs]

What is 5-hour energy drinks ? I'd rather try anything than take pills to be honest as we all know long term pills cnt be good for any one Iv not had an attack for three days now dnt no if it's down to what in taking but still have a headache lingering all day long but at least it's bearable and I can function .. But in the same breath I keep thinking this might be the calm before the storm and they will start again it's the dreading of the return makes me anxious X

[CHfather]

Remember what spiny said up above about trying some form of ginger product to reduce your ongoing headache.

5-Hour Energy is sold at grocery stores and drugstores.  A lot of places have it right at the counter where you check out.  It's caffeine mixed with other things.  Since it has quite a bit of caffeine, you don't want to take too many of them.  You would only take it when you feel an attack coming on. 

[Delightfu11debs]

I will

Try like I said earlier in my post I have expectations of this cycle and it differs from others I knew I had three days of peace from them but I new they would come back with a vengeance today was the typical example three days of peace 24 hours of hell which do I prefer ? well even though I have peace for three days in had peace it' was the best three days of this cycle today was a day from hell but when u even the odds I guess I Hav to take one day out of three a blessing bastards these headaches well today I decided to her drunk and take the consequences with it it's not going to rule my life I dnt drink I don't do nothing I shouldn't and today I decided I'd be a fool and take the chance of being a delinquent I'll let you no how it feels later on ha ha sorry but I'm peed off tonight of its not my work or my kids controlling my life so is these friggen headaches well pissoff ch Iv had enough of you's aswell so do ur worse I'll still. Be here the mora sorry guys but this is me having a downfall tonight and dnt care pffffttrtttt

[mit12]

Watching that video brings me to tears. When I found this site I was at the end of my rope. I was trying to figure out how I could get the family together and let them know that I was going to kill myself. How do you explain to your family that you can not live with this anymore?

Well I found this site and you guys saved my life.

I can not put into words my appreciation to all that helped me here.