Prednisone. First time sufferer

[bdoyle021]

I am 3.5 weeks into my first ever cycle. Luckily I live in buffalo New York, with one of the best neurological initiates in the world and was able to seek fast diagnosis and help. I have been on the predisone for over a week. As I seen myself off I feel the headaches are starting to come back? How long do these rebound headaches normally last? I have been having panic attacks like I might have chronic ch. I am wondering if it is possible to Only have one cluster period your whole life? My doc says it has happened before but has Anyone here only have one cluster period??

[CHfather]

bd, very very sorry you have to be here.  Attacks returning after a prednisone taper is not unusual.  Basically, you're just back in your cycle, so how long it will last is anyone's guess, particularly since this is your first cycle.  Hopefully, not too much longer.

 

It's a little hard to tell what you're asking.  If you're asking whether it's possible that after this cycle ends you'll never have another one, I suppose it could be possible.  There wouldn't be many reports about that -- Who would know? Who would report it? Who would they report it to?  Some people do have long remission periods, of several years or more.  That's more common nowadays, I imagine, because of treatments that have been developed by the CH community, like the vitamin D3 regimen and busting.  "Chronic" CH is when you have had attacks every day for a year, with only a one-week break (or something like that). "Episodic" CH is when you have cycles that last some period of weeks or months, with periods of remission in between.  You shouldn't be worrying about being chronic right now, and, realistically, you also shouldn't be hoping that you'll never have another cycle after this one ends.

 

So you should be very active in finding things that work for you. CH is definitely not a great thing to have, but you can get to where you can manage it quite well.

• You should very seriously consider starting the D3 regimen: https://clusterbusters.org/forums/topic/1308-d3-regimen/
• You MUST get a prescription for oxygen from one of those fine Buffalo doctors: https://clusterbusters.org/oxygen-information/ This is the most important thing for you to do.
• You can try melatonin at night, starting at 6-9mg and working up. 
• You should try drinking an energy drink, such as 5-Hour Energy, at the first sign of an attack.
• Your doctor should probably prescribe a preventive, such as verapamil, and an abortive, preferably injectable sumatriptan or at least a nasal sumatriptan spray.  Not sumatriptan pills, which are pretty much useless.
• You should learn about busting, which has restored many a CHer's quality of life. You can read about that in the numbered files in the ClusterBuster files section of this board.

And you should stick around here and learn from the good and knowledgeable people who have been around this block.  You are not condemned to a life of chronic or episodic misery, if you take responsibility for your treatment.

[spiny]

Hi bd!

 

CHF has given you some great information above.

 

I will only add that usually Pred is given as a bridging med. It provides relief for a week or two until your other medicine, say verapamil, kicks in. It is not a long time solution. As you taper down from the starting high dose, CH will return if your other med is not yet controlling your CH. Or if there is no other med prescribed. Those are not rebound headaches. Have you been prescribed anything else to go with the Pred?

 

While I will not comment on 'panic attacks' I can say that Pred makes some people tense and nervous. And hungry and grumpy! Depends on the person and the dose.

[bdoyle021]

Hi CH father I'm looking for the buster section. Could you possibly link me ?

[CHfather]

You have to be logged in to see that section.  If you're posting as a guest without having registered/logged in, you won't be able to get there. It's here: https://clusterbusters.org/forums/forum/6-clusterbuster-files/

[surgeonasim]

hi bd

..you have got two of the best advisors around here. And the best advice too. Log in and read all the stuff u can in the files and busting stories. You will be amazed to find the help that is in there.

 

I am here just to share my bit of experience with pred. Way back when it was advocated that a short 10 day course of pred, starting with 60 mg per day and a quick taper off from day 7 onward would abort a cluster cycle, I tried ...and found out that it was 45 days for me to be totally pain free till the next cluster.. of course I was taking Valpro too. Two years it helped. The fifth cluster cycle...well...it came back with a vengeance when I stopped after 45 days.

My first suggestion ; plz listen to what CH father has said. And you shall be fine soon.

What it did to me was not very pleasant. Being a med person myself I knew what I was getting into, I got it all and then some. Gained about 25 pounds. Became a warty toad with boils all over my body. My ligaments got all lax and I even had a transient coronary while playing tennis, which again, was a difficult exercise given the side effects.

I did lose all the bad ones in some while but I cannot think of going thru that again.

Get pain free soon

[bdoyle021]

Thank you CHfather for your timely response!

Surg, I am on 60mg taper of pred for 12 days. I am down to my last day or two. The attacks are not severe but I do have a dull achy headache all day. I am going to buy the needed vitamins for the d3 regimen tomorrow. So 45 days was how long your cycle seems to last? How many cycles do you normally average a year?? I cannot afford the nasal spray or injections I was prescribed so hopefully the preds help dull these attacks

I am doing a lot of research to hopefully kick this beast ass in the future. My birthday is May 25th. My first attack was April 6th. Hopefully I can beat it by then, being an artist and designer it's tough not being able to draw or look at the computer for this long!! Just trying to ride my bike to keep myself occupied. The community of cluster sufferers is very supportive, I thank you all.

[Dallas Denny]

G'evenin bdoyle!

Welcome to the community (nut house)...so sorry ya need to be here!

Looks like everyone has covered all the basics for you but I'm gonna reiterate Chf's comments regarding oxygen.....the ONLY effective treatment for clusters that doesn't come with side effects (for most of us anyway) and is fairly inexpensive.

As to your question regarding ONLY having one cycle your whole life.....impossible to speculate....the Beast manifests itself differently for each of us....what works for one doesn't for someone else....there is no "standard" cycle length or remission period (my cycles run from 12 to 20 weeks and I've had remissions as short as 9 months and as long as 2 1/2 years).....been dancin with the Beast for 32 years now!

Read,read,read and ask questions.....there's only a few longtime active members here now a days but just between Bejeebers, Spiny, and myself you're drawing on close to 100 years combined experience doing battle with the beast,and Chf adds many years experience as the supporter of his clusterhead daughter!

Dallas Denny

[CHfather]

I think verapamil is pretty affordable. It's a preventive, not an abortive, but it might be better than nothing.  There are programs available at many/most pharmacies to reduce the price of sumatriptan injections and sprays.  Still very expensive, but less.  http://www.goodrx.com/sumatriptan?form=nasal-spray&dosage=6-unit-doses-of-20mg&quantity=&days_supply=&label_override=sumatriptan

[ChrisSelf]

Definitely would recommend the oxygen treatment. And to avoid triptans if possible.

Depending on the prednisone prescription, I use to have to up the dosage and take a second round of prednisone.

[bdoyle021]

I am going to talk to my neuro about oxygen and get a blood test as well. The thing about my headaches is I don't get the red puffy eye or any symptoms really, Just the pain behind me eye. Anyone else not show symptoms?

[CHfather]

You were diagnosed by a neurologist as having CH (as you say in your first post) without having any symptoms except severe pain behind your eye?  Since I'm not a neurologist or any kind of doctor at all, I can't really comment on that, except to say that it seems a little odd to me. I would think a doctor would be inclined to go first to migraine or sinus headache.  But I really really really don't know, and your question is a good one.

 

You might have noticed by now that this is a pretty small community.  Used to be a lot bigger, but now people are often using Facebook groups.  Since you sometimes ask general questions, you will probably get more responses from a bigger group. I'm not trying to get rid of you, and in general I think the folks here can be more substantively helpful than those FB groups, but you might consider also joining a FB group.  The group called "Cluster headaches" is a good one. You have to ask to join.  If I try to link you to it, I just get a "Page Not Found" message, but it shouldn't be hard for you to find.

[ChrisSelf]

I generally only get the red puffy if it's a really bad headache. I find it odd that you never get it but I've seen stranger things

[bdoyle021]

Yeah I'm not sure. Ch father, the doc had a hunch it was cluster headaches due to the one sided pain and the fact that I was woken up every night at 230 with pain on only one side.

[CHfather]

The like-clockwork regularity of your attacks definitely does support your neurologist's hunch.  The one-sidedness could be a bunch of things.  But put that regularity together with one-sidedness and it does make it very reasonable to treat it as CH and see what happens.  I don't think prednisone is usually used for migraine or other one-sided "headaches," so maybe its effectiveness will be a test.  Oxygen would be the best test, I think. 

 

Are you taking melatonin at night? 

[bdoyle021]

CHfather, yes 10mg of melatonin a night.it is very difficult for me to sleep. I sleep for an hour then wake up then another hour and wake up. generally I feel best in the mornings, I still do have a pain in my eye which isn't terrible but it is annoying. I am nervous and not sure what to do, I am down to my last pill of predisone. I feel like it did help but everywhere I read people say sometimes the ch comes back once the taper is over. Maybe it's just a waiting game now, I've already gone through 2 predisone tapers but the first one was a very low dose. I also had an occipital nerve block which may or may not have helped. I have an Mri tomorrow but have to wait 2 weeks to see my neuro again, it stinks it takes so long to schedule an appointment!

Today would be my third time doing the d3 regiment. at this point I'm not sure what else to do. I think I'll stick with this.

If not ch, what other painful one sided attacks are there? Like I said, no symptoms of runny eye or sinus nasal discharge. Just the pain in my eye brow, eye area which spreads to my temple and other parts of my left side.

[CHfather]

Hemicrania continua is a "headache" condition that often seems to be confused with CH. https://www.migrainetrust.org/about-migraine/types-of-migraine/other-headache-disorders/hemicrania-continua/ (HC is effectively treated with a drug called indomethacin, which doesn't help with CH.)

 

Migraine: >>Migraines often begin in the evening or during sleep.. . . In typical cases, the pain is on one side of the head, often beginning around the eye and temple before spreading to the back of the head.<<  http://www.health.harvard.edu/pain/headache-when-to-worry-what-to-do

 

Are you able to sit or lay still when you have an attack?  People with CH generally can't -- they're too agitated.  People with migraine can. 

 

Some people take a lot more melatonin -- up to 25/30 mg.   Have you tried an energy drink yet?  For most people, even if they drink it at 2:30am to reduce or abort an attack, they don't have problems getting back to sleep.  Have you tried the feet-in-hot-water thing?  These are all less appropriate/effective than oxygen for CH or Imitrex for CH or migraine, but that seems to be where you're at for now.  Again, I'm surprised that you had an ONB but not some other more conventional first-line things, but I'm no doctor.

[bdoyle021]

CHfather i will ask my doctor about the indometh to see if that may help.

During my nighttime attacks I do want to get up and move, tho sometimes I have layed there and curled into a ball waitin for a pass. I haven't had a real attack in a couple days which is good news, still random ice pick jabs in the eye and a pretty much constant headache all day.

[Bejeeber]

I'm glad you're getting lots of good input here. And glad you're not on any extended prescriptions of high dose prednisone, as surgeonasim and some others of us have been on in the past in desperation and paid a dear, permanent price (it's SUPER dangerous at high doses when not prescribed in a short taper).

[mit12]

Be careful with how much and how long you take Prednisone as it can soften bones. My doc was very specific in the use and duration he would let me take it. I hated that because it was Prednisone was real effective for me.

There are a lot of good people on this site that have a lot to offer. Please listen to them with an open mind. This site and its people have saved my life and I will be forever grateful. Good luck.

[sunjunkie80]

bdoyle021- New to this group but I was recently diagnosed with CH and I too have the most pain behind my eye and into the eyebrow area, once the attack is full blown, my pain will wrap around to the temple area and down into my neck even.  I ONLY have a stuffy nose and it hurts to open the eye on the affected side but I do not have the actual drooping of the eye, redness or puffiness of the eye. I also have a residual, nagging pain that is almost always there, it is especially bad the first few days after a CH. The pain is just bearable enough to function but enough to annoy the shit out of me! Your particular beast sounds very similiar to mine. By the way, can someone have BOTH CH and Hemicrania Continua or is it one or the other?

 

Thanks! 

Kelly

[spiny]

Welcome Kelly!

 

I do not know if they are mutually exclusive or not. But they are very different. I suspect that you have already looked them up at this point. The treatment is different regarding what is prescribed by your doctor.

 

It would be a great idea to start your own thread.

 

The neck pain is rather common. You can get what is referred to as a ' Cluster Knot' pretty often. It does not disappear when the CH hit is over after a few hits. Just hangs around and drives you nuts!!! Some are prescribed a muscle relaxer or Valium for the pain. Especially if it interferes with sleep. 

 

If it is all over pain, it would likely be what is called a 'shadow' . I see where this has been addressed on another thread.

 

I don't think that all suffers have the full symptoms with their eye. With Horners Syndrome (something to look up) you will eventually get a constricted pupil that does not fully dilate in low light. The drooping seems to get worse as a cycle and hits add up.

 

I look forward to reading more.

[sunjunkie80]

Thanks for the info! I am still not sure where to put things in terms of responses, threads, etc...I apologize in advance for putting things in the wrong spot.

[spiny]

Not an issue!

 

How are you doing? Stating your own thread just offers members a chance to meet you and understand were you are and where you have already been. Your getting here is the main thing. A lot of us start out the same way. I did as I remember.

 

We want to help to get to a better place, That is the main thing.

[sunjunkie80]

Thanks! I am so thankful for this group!