New to clusters and need suggestions

[Nicoleabc4]

Hi.  I know I will not use correct terminology.  I am new to this.  I had my first episode April 1st and an ambulance was called.  I thought my head was going to explode!  By the time the ambulance got to the hospital I was feeling pretty silly because I was doing the "pain scales" and was saying right now I am at 0.  If you asked me a half hour ago there wasn't a number high enough to give you for the pain scale.    Anyway, since that first episode, I get at least 4 per day at pretty regular times.  Sometimes I get more.  I often get them about an hour after I go to sleep.  The pain even wakes me up and works into my dreams. The other night I had a dream that I was hit by a pipe wrench and is is exactly how I felt when I woke up.  I am sure I am preaching to the choir here.  My question is how on earth do you cope with this?  My general practitioner has me on calcium channel blockers and anti convulsive medications to try to prevent them.  They are doing a fair job but I still feel them lurking and trying to push through.  They do manage to get through but nowhere near the pain level as before.  However my cognitive skills, memory, and eyesight or seriously impaired on these meds.  I also can't eat on these meds.  I will finally get to see the neurologist for the first time on May 22nd. Please, help me with any suggestion on how you all have been coping with this?  

[Rod H]

If you have clusters you need to get O2 prescribed by your dr. My suggestion is to read everything on this Web site and decide which treatment options suit you. It's probably best to do this before your next dr. appointment. Knowledge is the key to making this affliction manageable. Know that there are answers to your questions here and support. 

[Potter]

You need to see a Neurologist/Headache specialist first.

 

                       Potter

[CHfather]

Rod is right that you have to read.  But starting with some basics (and assuming that you have CH): google [goadsby treatment of cluster headache] and you'll see a straightforward discussion of pharmaceutical treatments.  The anticonvulsants (typically gabapentin/Neurontin or maybe Lyrica) are not first-line treatments, although they do work well for some people.  This is something you'll probably learn -- things that work for one person don't work for another.  Usually the anticonvulsants make you feel  addled and dopey -- but not for everyone.  You probably are not yet taking enough calcium channel blocker (verapamil, probably) to be fully effective. Dosage during a cycle can be in the 960 mg/day range -- but it should be monitored from the beginning for side effects.  As Rod says, OXYGEN is what you want most.  Be prepared to demand that.  And don't assume that a neurologist will know what s/he is doing.  You might get lucky, but most are pretty darn clueless, so be fully prepared to advocate for yourself.  (A course of steroids can hold back the pain early in a cycle so that the verapamil can kick in more, and sumatriptan injections or nasal sprays are very good for aborting attacks, though many feel that they extend cycles and create "rebound" attacks.)

Most people find that non-prescription treatments are most effective.  The vitamin D3 regimen, described in the ClusterBuster Files section, has helped hundreds.  Busting (using psychedelic substances, sometimes at non-psychedelic levels) has been a godsend for many (see the numbered files in the ClusterBuster Files section).  Melatonin at night, starting at about 9mg and working up as needed, has helped many.  Quickly drinking an energy shot such as 5-Hour Energy at the first sign of an attack is a big help for many (for some even a strong cup of coffee works well).   

[Potter]

12 minutes ago, CHfather said:

Rod is right that you have to read.  But starting with some basics (and assuming that you have CH): google [goadsby treatment of cluster headache] and you'll see a straightforward discussion of pharmaceutical treatments.  The anticonvulsants (typically gabapentin/Neurontin or maybe Lyrica) are not first-line treatments, although they do work well for some people.  This is something you'll probably learn -- things that work for one person don't work for another.  Usually the anticonvulsants make you feel  addled and dopey -- but not for everyone.  You probably are not yet taking enough calcium channel blocker (verapamil, probably) to be fully effective. Dosage during a cycle can be in the 960 mg/day range -- but it should be monitored from the beginning for side effects.  As Rod says, OXYGEN is what you want most.  Be prepared to demand that.  And don't assume that a neurologist will know what s/he is doing.  You might get lucky, but most are pretty darn clueless, so be fully prepared to advocate for yourself.  (A course of steroids can hold back the pain early in a cycle so that the verapamil can kick in more, and sumatriptan injections or nasal sprays are very good for aborting attacks, though many feel that they extend cycles and create "rebound" attacks.)

Most people find that non-prescription treatments are most effective.  The vitamin D3 regimen, described in the ClusterBuster Files section, has helped hundreds.  Busting (using psychedelic substances, sometimes at non-psychedelic levels) has been a godsend for many (see the numbered files in the ClusterBuster Files section).  Melatonin at night, starting at about 9mg and working up as needed, has helped many.  Quickly drinking an energy shot such as 5-Hour Energy at the first sign of an attack is a big help for many (for some even a strong cup of coffee works well).   

Never assume.

            Potter

[Nicoleabc4]

Thank you.  I had a difficult time getting my doctor and even the the first er doctor to listen to me.  At the first emergency room the insisted it was "acute migraine" and kind of lectured me and asked why didn't I just take my migraine meds?  I insisted it was not a migraine.  I have had very bad migraines to the point where I lose vision temporarily since I was a child.  This was not a migraine.  It was all on my right side of my head with indescribable pain, my eye watering, my nose felt like it was clogged and like somthing crawled up there and was eating my nasal cavity, my teeeth, my, ear, my jaw, my cheek, everything...excruciating!  With a migraine I would have done sensory deprivation and tried to lay down.  Tried that...big mistake!  Made it MUCH worse.  All I could do was pace, hold my head, rock, try to find something that would provide some relief.  Nothing.  Scared the heck out of my family!  They though I was having a stroke because I guess I kept asking if my right side of my face was drooping.  By the time the ambulance drivers did all the hooking me up to stuff and  pulled out my driveway it resolved (about an hour our so into the ordeal).  The whole next week was more of the same at home. The next weekend I timed a trip to another more prominent hospital between attacks since they seem to come at pretty regular times.  They instantly diagnosed cluster headaches after hearing everything that has been happening and put me on oxygen at the hospital and referred me to a neurologist.  However, I called the neurologist and couldn't get in from an er doctor's referral.  It has been quite a frustrating run around.  I finally managed to get an appointment. We will see how it goes on May 22nd.  I am a pretty wimpy person and not so great at self advocating.  Maybe I should find someone to go to the appointment with me.  I am in awe of how strong all of you people must be to live this for so long.  I am completely miserable right now and have no idea how you do it.

[CHfather]

Sure does sound like CH.  Everyone here will tell you that oxygen is essential for CH.  For whatever reasons, many or even most neurologists don't prescribe it.  I could go into the possible reasons, which include not knowing how to write the prescription, but you just have to be ready for that, and ready to insist as much as possible.  Yes, bring an advocate with you.  Here is the article from the Journal of the American Medical Association demonstrating the effectiveness of oxygen.  Wouldn't hurt to bring it with you, or maybe even send it in advance to an assistant or PA.  http://jamanetwork.com/journals/jama/fullarticle/185035

Yes, people with CH are remarkably strong (I'm not one of them; I'm just a supporter of a family member with CH).  But the right strategies -- including serious consideration of busting -- will make it much more manageable for you.  I don't think it could hurt you to start the D3 regimen right away.

[spiny]

Welcome Nicole!

Trying the 3 Regimen could be a big help for you. Just vitamins. It can be found in the ClusterBuster Files board. A Neuro is likely to look askance at the idea that vitamins can help what morphine won't. It can lower the intensity of your hits and slow the pain ramp up. Cheap, good for you, and legal.

Pushing hard for O2 should be at the top of your list when you see him. What country are you in? That can make a difference on the O2 script. Some doctors will give you a hard time over the O2, so be prepared. It is the number one abortive out there!! This is where your advocate can help a lot. It shocks me how many Neuro's have not learned how to treat Clusters. Those of us over 65 often use welding O2 because insurance won't pay for O2. Also, many don't describe how to use it. We can do that. You want a regulator that goes up to at least 15lpm. Preferably 25lpm. Along with a non-rebreather mask or tube. You can learn how to use it effectively here. 

Drinking an energy drink as fast as possible at the very start of the hit can help kill a hit. I use coffee as the energy drinks make me sick. Some people will rub a cold can across the area where the pain is. Others swear by heat. As previously stated, Melatonin at bedtime helps many too in the higher doses. Usually 9 to 20mg taken 1/2 hour before bed. Sleeping in a recliner with your head above your heart also helps with nocturnal hits.

As stated above, Verapamil and a steroid taper (Prednisone in the States) is what is most often prescribed. The steroid will likely stop the hits initially. That gives the Verapamil a chance to kick in hopefully. Some cannot take the high doses often needed due to low blood pressure.That needs to be monitored as the dosage is increased and is easy to do at home.

Most Neuros will order a scan (MRI?) of your head too. Just to rule out other stuff being wrong up there.

That was pretty slick to time the second trip to the ER!! Kudus.

Please keep us posted!

[Nicoleabc4]

Thank you for all the input.  I did have a scan at the hospital and they said all was clear.  I did think it was a pretty slick idea to time in between attacks to dash to the er.  At intake, the nurse called me brave.  I told I wasn't all that brave.  This 48 year old lady's big plan was to pull over to the side of the road and call her mommy if an attack came on while I was driving.  The er doctor had me on 80 MG 3x/day of of verapapamil but my general practitioner, much to my dismay, decided he doesn't like calcium channel blockers so he chopped is down to 40 MG 3x/day.  Thanks for that.  Then he popped me on Trokendi XR 50mg 2x/day. Those are those ones I call my "stupid" pills.  I can feel my IQ dropping by the day.   They are killing my eyesight,I can't remember anything, tingling hand, dizzy, can't think straight, and I can't eat.  Everything I read says you are supposed to build up to that kind of dosage.   He slammmed me with the full dose all at once....no building up.  Don't get me wrong.  I don't want to go back.  These things make me feel awful with the side effects but I never want to feel that hideous pain again.  I am scared to say anything to the doctor though.  I can still feel the attacks at their normal times.  I get the eyelid drooping, the sweating, the overheating, the congestion, a bit of the pain. I just don't feel that crippling pain.  I think I am going to suck it up how it is for a week until I get to the neurologist and see what he has to offer and weigh my options from there.

[Nicoleabc4]

Oh and I am in the United States.

[spiny]

80mg x3 is a fairly standard starting dosage for Verap. The dosage goes up from there to as high as 900mg or so. Your GP did you a huge dis-service by reducing it for personal not medical reasons..

Adding the Trokendi XR is adding insult to injury. It is for Migraines of course. So, strike two for me. Yes, those side effects are awful. Don't think that I want glaucoma or blindness thank you. All of those symptoms should be reported to him!! They suck and can be dangerous. Especially the eye issues. It is an anti-convulsion medicine passed down to migrainers and then thrown at CH to see if it sticks!!

I can't wait to read that you got a proper diagnosis and treatment with the Neuro! Just a few more days until you get some medical help I hope.

Have you tried any of the suggestions given above? Please push for the O2 and take an advocate with you. Perhaps Mom, since she would have rescued you! Or someone who saw one of your attacks.

[BluesFan85]

Nicole I'm so so sorry for you I really am.  Yeah the pain from these things is unlike anything anyone will ever experience except for people like us who have the beast.  It's hard for people to even fathom the kind of pain were talking about.  Another thing you should get used to is from other people hearing about what you have, "oh you have headaches I've had a bad migraine before to I know how you feel you just gotta suck it up."  Yeah that's not a cluster headache.  Everyone says get O2 I honestly found it didn't really work good for me at all.  Coping with these things is hard let me tell you a few things I do when I get them that might help you and I don't mean pills and stuff just things you can do at home to try and keep occupied until attack is over.  Okay for awhile I found that a really hot shower helped out a lot!!!  I would stand with it hitting my back on the lower part of my neck and down and sometimes I would kneel down on one knee and maybe rock a little and let the water hit my back.  This would honestly work a lot in helping .me block out some of the pain and just cope and handle it.  Also I walk in my basement from one side to the other and touch the wall then walk back to the other.  Breathing deeply in and out my mouth and just pacing this honestly is one of the best things.  Sometimes I also get ice water and take sips as I'm walking for some reason it helps, just little sips.  Also you could try energy drinks!!!  If you start to get a shadow or that feeling that you think your going to get an attack shortly try drinking an energy drink like a red bull or a monster or something.  Make sure it's got Taurine in it.  For some reason this seems to work for a lot of people, oh, this and coffee will also work to.  Some people also say putting an ice pack on your neck or forehead where your effected helps but I found personally it don't help me at all. 

 

Oh yeah calling the ambulance or going to the ER honestly is usually a waste of time by the time they get there or you get to the ER and you get in your attack will probably be gone.  I know I've done it like 6 times until finally I was like this is just a waste yeah the attack was super bad but just remember it's going to go away and when your that bad already there really isn't anything there going to do at the ER that's going to help you

[spiny]

Jacob,

The 'breathing deeply' while you pace is likely the key to it helping. I do deep breathing as soon as I feel the hit. In deep and out with force and a crunch at the end. This has helped shorten O2 time and is really great if I am stuck in public with a hit. Lately I found out that I am not the only doing this and having it work. Our most esteemed Batch wrote about it recently.

You are getting rid of the Nitrogen and that is what helps.