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I am new to all of thisÂ… to the site and to the headaches.  I didnÂ’t know cluster headaches existed before needing to research what might be happening to me.  Your stories made me cry.  I canÂ’t believe people have had to suffer for years on end with this.  Thank goodness for this site.  I pray for those who havenÂ’t found it yet.

I have just begun seeing a GP, have been reading on this/other sites like mad, and am trying not to go down the wrong path.  Although not officially diagnosed yet, I wondered if anyone could help with insights at this stage.  I canÂ’t find any other explanation that fits, although the doc seems to want to exhaust every other idea before seriously considering CHs.  He ordered MRI/CT Scan and gave me Vicodin (doesnÂ’t work).  He only agreed to refer to Neuro after I begged and told him I could not wait 6 months. He said IÂ’d have to be diagnosed before IÂ’d be able to get O2. IÂ’m living in terror everyday of the next bad attack.

IÂ’m a 47 yr old mom of two awesome little boys.  I donÂ’t smoke and have a few drinks maybe 6-7 times per year nowadays.  Early on, I thought maybe I was having perimenopausal migraines but IÂ’ve read migraines donÂ’t just last 20 minutes and have been told this is unlikely given IÂ’ve never had them before.  Here is my experience (please forgive amount of detail as IÂ’m not sure what is relevant):

March 2011 - woke up around 2 am with the worst headache/pain behind left eye.  Never felt this kind of pain before.  Only had Advil in the house.  Only lasted about 20 minutes but I was troubled at the kind of pain and what else might be going on.

Two weeks later – put kids on bus and laid back down to sleep around 7:10 am, woke about 8:30 with same terrible left eye pain, radiates down face/jaw/neck, has a burning quality, excruciating! but over in 30 minutes

One week later – same as above, started trying Excedrin Xtra Strength (doesn’t work)

By Mid-April – getting them every other day, same time every day which is after I lay back down in morning and they wake me up, also getting “shadows” as I believe they are called at different times of day/night, now noticing nasal congestion on left side, most last 30 – 45 minutes

April 23 – terrible headache at midnight, lasted about 2 hours, worst one yet.  I drank alcohol earlier in evening. CouldnÂ’t lie still, had to wring hands/kick legs (very scary), could feel/hear my pulse pounding in my ears, starting to worry my kids are going to witness this at some pointÂ… after this one, continues every other day, back to that morning schedule, always left side only

May 1 – only 20 minute headache but have had neck stiffness on left side with knot in my left shoulder for a few days

May 2 – first time they came two consecutive days, total attack was 3 ½ hours but there was a break so I believe this was two, now this is worst by far… if my husband was home I probably would have gone to the ER, again wringing hands/kicking legs, pulling my hair, can’t lie still and the pain is unbearable

I decided to start going to bed at a decent time at night and stop laying back down after the kids get on the bus (amazing how sheer terror makes it easy to alter entrenched habits).  I went 5 days without a headache, although still had shadows for several days and wondered if it was remission.  Then Happy MotherÂ’s DayÂ… headache woke me in morning but ended up being very mild and only 30 minutes.  I am now feeling desperate as I woke at 11:15 pm last night with another really bad attack.  I am desperate to stop this.

Some questionsÂ…

1) Anyone think this could be something other than CHs?

2) Is altering my sleep pattern and having them stop for 5 days consistent with CHs?  If so, why would they come back if IÂ’ve stayed on the altered schedule?

3) If IÂ’m lucky enough to get a remission soon, can I expect it to last for years this first time or is everyone different?  Should I expect these to come back next Spring? Or could I be chronic from onset?

4) Although IÂ’m fine with doc using MRI/CT scan to rule things out, if IÂ’m diagnosed with CHs, IÂ’m determined NOT to begin the traditional drugs. Would the recommended prevention strategies be the same for someone in this early stage as those of you whoÂ’ve suffered so long?   Which would make the most sense to start with?  I would rather try something right now that has a very good chance of working (RC seeds?) than prolong trying things that may/may not help.

5) Does anyone know of others who have stopped CHs after only one first cycle and what was used?

Thank you in advance for any insights/advice you can share.  I will be looking for the best ways to give back or “pay it forward” no matter how this turns out.  IÂ’m so grateful for this site and the help you are providing!  So sad for all the suffering, so happy for those who have found relief! 

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Solace, so sorry that you have to be here.  You will find the best people here, ready to do their best for you.

I'm going to skip almost all of your questions (leaving them to others) and suggest something pragmatic that you could do right now, which has helped a lot of cluster headache sufferers and is probably not contraindicated by other things you might be doing or conditions you might have.  Since I'm not a doctor, there's a disclaimer here that maybe you should check with your GP first, although most people are doing this regiment without incident.

As soon as you can, start taking about 10,000 international units per day of vitamin D3. You could take more (some folks take 20K IU per day), but high dosages for extended periods are not recommended. You should take it with food.  You can take it all at once or in two 5K pills (or whatever denominations you can get).  Also take calcium citrate tablets, which usually are formulated with magnesium and zinc (and maybe some other things, including a relatively small amount of additional D3).  The recommended dosage of these is 2 or 3 tablets per day.  You don't have to take them with food, but you can, of course.  And also take Omega 3 fish oil capsules, roughly 2-3,000 mg per day.  Others who are on this regimen also drink a glass of lemonade once or twice a day, with meals.

There are substantial success stories here and elsewhere with using this method.  You can read a great deal more about it in a long, somewhat complicated thread here: http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1291969416/50

I recommend at least skimming that, because you see success stories and individual variants.  There's also a thread here at Clusterbusters, with less detail but still worthwhile: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1300245052

As I say, this might not be the very best thing you could do, but it's simple, legal, and it has shown considerable effectiveness.

Again, not being a doctor and specifically not being your doctor, I can't simply say that you should circumvent the system you're in and get oxygen, but that's sure what I would do.  You can use welding oxygen without waiting for a prescription.  For now, and in the long run, you should be familiar with the information contained here: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1299901790

And you might order some RC (rivea corymbosa) seeds now (they're completely legal to buy and possess), just in case.  www.iamshaman.com is a place where many people get them.

Whatever you have (sounds like CH to me), I know how tough it can be to deal with all this information, while at the same time dealing with medical practitioners who probably have no real appreciation of what you're going through, and friends and loved ones who think you have "headaches," or at the worst "migraines."  We will do our best to help you, but you should enlist others, too.  (There are some videos at youtube which I can't bear to watch, having seen more than enough as I have sat up nights with my daughter, but which she says quite accurately portray what a CH attack is like.  I'm not suggesting that you should watch them, but if people are doubting what you're going through, my daughter says they're quite a waker-upper for them.)

My daughter was just saying last night how hard it is to have CH and take full responsibility for yourself.  But you're in a helpful place here, as you'll see.  And you're "lucky" to potentially be getting a relatively quick diagnosis and to have found the wonderful folks here who, as I can't say often enough, saved my daughter's life.

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DHfather,

Thank you for your reply.  Your info makes good sense.  I will spend time reading and will likely start the supplements tonight if possible.  I will post how it goes.

P.S. Can't imagine how incredibly difficult it must have been to watch your child in this kind of pain.  Hope she is painfree now.

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I have just begun seeing a GP, have been reading on this/other sites like mad, and am trying not to go down the wrong path.  Although not officially diagnosed yet, I wondered if anyone could help with insights at this stage.  I canÂ’t find any other explanation that fits, although the doc seems to want to exhaust every other idea before seriously considering CHs.  He ordered MRI/CT Scan and gave me Vicodin (doesnÂ’t work).  He only agreed to refer to Neuro after I begged and told him I could not wait 6 months. He said IÂ’d have to be diagnosed before IÂ’d be able to get O2. IÂ’m living in terror everyday of the next bad attack.

Vicodin dont work. The MRI excludes anatomical defects..tumor,AVM, ect. This is part of the diagnosis process. The neuro will do that. Durp! Diagnosis first then treatment. Clusterheadaches.com has a cluster quiz, go there take it, if you haven't already. It will help you diagnose yourself, if you will. I'll pray you dont have them.

Here are the traditional treatments.http://www.plainboard.com/ch/chtherapy.pdf

Keep reading and study once you get a diagosis.

http://www.clusterheadaches.com/wwwboard2/index.html

Check out the links on the left. ;)

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Looking for Ass...got my attention ;D

Hello and welcome to the group.....and as the saying goes, sorry you had the need to find us.

No one here is really known for beating around the bush so I won't try to start a new trend.

Answer to question #1 is: Sure sounds like stereotypical cluster headache symptoms.

Free advice and I hope you get yur money's worth ;)

You need to get a proper oxygen setup ASAP. If you have to just go to a welding supply store and fake it till your doctors prescribe it. Get a high flow regulator and an Optimask.

Secondly, if these things continue as they probably will, I would highly recommend find some magic mushrooms and dose with them as recommended. I called BS on mushrooms for years and years as doctors, neurologists, neurosurgeons told me that "they" could do one more surgery...or one more medication therapy. :-[ :'( :P :P :P

The only thing that has fixed me is oxygen as an abortive and mushrooms as a preventative. The combination has truly saved my life. I was chronic for seven years and now live "virtually" pain free.

I will be glad to help you any way I can, as we all will.

Dan

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Looking for Ass...got my attention

;D ;D ;D Your killin me Dan..lol

the bb

lots of stuff to throw at that headache...so dont be discouraged.

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Hope she is painfree now.

My daughter's situation, after many years of misdiagnosis and mistreatment, is much, much better now, thanks to RC and oxygen.

Which reminds me -- many people find that chugging a Red Bull, or some other "energy" drink loaded with caffeine and taurine, at the onset of a CH attack can help quite a bit.

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There is good in everything. Sometimes it's just harder to find.

Caffeine/energy drinks will abort a headache as stated above. Quick exercise can also abort a headache. I chug coffee, stong lots of it and fast. These are techniques that we use until we can get to the doc or run low on other abortives. What else is there guy's? I think some use ice on the neck. I use a cold spoon from the fridgerator on my eye, to help with the fire eyes. cold rags/bag of peas from the freezer, you know where to place them.

Stay away from triggers,,,alcohol, pot, relaxing, stress.ect..ect.there are more

Diagnosis,timing and a treatment plan. The neuro will help with that. If he/she doesn't, tell us we will beat it into them. >:( ;D Your best weapon even with the neuro is knowledge. Do your homework you'll be glad you did.

the bb

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Hi Solace and Welcome!  Sorry you had the need to find us, but happy that you did.

1) Anyone think this could be something other than CHs?

Possibly, but it sure sounds like CH to me.  You do need to get a proper diagnosis preferably from a neurologist. 

2) Is altering my sleep pattern and having them stop for 5 days consistent with CHs?If so, why would they come back if IÂ’ve stayed on the altered schedule?

Altering your sleep pattern and getting some relief is absolutely consistent with CH.  As far as them coming back goes, this is consistent with CH also.  Naps are a common trigger for CH, but stopping them will not completely stop CH.  It'll just make it change up.  You are probably best off if you try to go to bed and get up at the same time daily, with an optimum sleep time of 7 hours.

3) If IÂ’m lucky enough to get a remission soon, can I expect it to last for years this first time or is everyone different?Should I expect these to come back next Spring? Or could I be chronic from onset?

Everyone is different when it comes to this disease.  If you are lucky enough to go into remission, then it could last a few months to years.  I have a brother diagnosed ECH who has been in remission for over ten years. 

You can be chronic from onset (primary chronic).  I was diagnosed primary chronic refractory to standard meds.  But it is much more likely that you will be episodic.  Some 70 to 80% are diagnosed ECH.  If so, you may get cycles annually, semi-annually or you may go years between cycles.  Everyone is different, although I am guessing that the majority have their cycles either annually or semi-annually. 

4) Although IÂ’m fine with doc using MRI/CT scan to rule things out, if IÂ’m diagnosed with CHs, IÂ’m determined NOT to begin the traditional drugs. Would the recommended prevention strategies be the same for someone in this early stage as those of you whoÂ’ve suffered so long? Which would make the most sense to start with?I would rather try something right now that has a very good chance of working (RC seeds?) than prolong trying things that may/may not help.

Good question Solace.  The pain we get from this disease is so horrific that anyone who has experienced it knows that the panic and disruption of normal life activities makes it of paramount importance to use the best treatment one can find.  If I were you, I would go ahead and order some RC seeds and thoroughly familiarize yourself with oxygen treatment, and possibly go ahead and see about getting welder's oxygen.  I have just one caveat:  Get diagnosed.  Like CH father said, you need to get a proper diagnosis. 

5) Does anyone know of others who have stopped CHs after only one first cycle and what was used?

I hate to rain on your parade, but the short answer is no.  But of course that doesn't mean that it never happens.  What you can expect with busting is that you can actually stop your cycle and prevent others from ever happening.

Have you actually gotten an appointment with a neurologist yet?  I don't know where you live but there's a good chance that another CHer lives in your vicinity, and can recommend one near you.

Just don't panic.  You've come to the right place.  We will work through this and figure it out together.  There is a lot of collective knowledge on these boards.  Read and ask questions.  I have attached an article by Dr. Todd Rozen on CH when you feel like reading.

All the best,

Bobb

ToddRozen_CH.PDF

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CHfather... are you also a CH sufferer?  I made an assumption based on your username I guess.  Thought you were mainly here on behalf of your daughter.  Very impressed with your knowlege... are you taking the D3/cal/omega 3?  Is it working for you?

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Thank you so much Alleyoop!!!  Your reply is so helpful.  Everyone has been so helpful today.  I guess I am in panic mode but this is starting to calm me down a bit.

I am currently living in Northern Indiana (could go to Elkhart, Goshen, South Bend, Mishawaka or even Fort Wayne).

Received a phone call that my doc has changed Neuro he was planning to send me to (hoping that means the new one is headache specialist or even familiar with CH, but need to call tomorrow to see).  If not, don't want to waste time.

Have to take my boy to baseball... will check back later... Thanks again to all!  So grateful!

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I am currently living in Northern Indiana (could go to Elkhart, Goshen, South Bend, Mishawaka or even Fort Wayne).

Does ch.com still have a list of doctors by city?  Maybe one of you guys who is more familiar with ch.com can find Solace a neuro?

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Does ch.com still have a list of doctors by city?

Ouch has a list: http://www.ouch-us.org/chgeneral/OUCH%20DOCS%20-%20US%203-2011.pdf

These lists are of course not comprehensive -- just folks recommended by CH patients.  Here are the only ones from Indiana:

Indianapolis:

Dr. Robert J. Alonso

Indiana Clinic Neurology

Dr. Bette G Maybury

Merrillville:

Dr. Kathryn A. Hanlon

Northern Indiana Neurological

Dr.Larry Salberg

Northern Indiana Neurological

New Albany:

Dr. Joseph F. Seipel

CHfather... are you also a CH sufferer?I made an assumption based on your username I guess.Thought you were mainly here on behalf of your daughter.Very impressed with your knowlege... are you taking the D3/cal/omega 3?Is it working for you? 

No, just her.  Wish it was me instead.  I'm sorry to say that I am very frightened of the famous CH "jinx" (say you're PF (pain free) and you might regret it). I think it's my only superstition.  So I will only say that my daughter started taking the D3 combo about two months ago, and that her expected spring/summer cycle (for many people who are "episodic," CH comes in fairly predictable cycles, often at a change of seasons) has not begun.  She has also been "maintenance dosing" with RC every couple of months.  We are hopeful, but prepared.

My daughter, incidentally, is in her 30s.  Which makes me old enough to have the free time to learn whatever I can that might help her.  The thing about the D3 is that (a) a lot of people have benefited from it; (B) it's just a non-extreme supplement routine, almost certainly not dangerous in any way; © it's easy to implement; and (d) it doesn't -- as far as is known -- interfere with busting.  So for us, it's really "Why not?"

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Hi Solace,

I may have overlooked it but...are your headaches (I prefer to call them head attacks) on one side, and one side only? Mine are on my right side...that is the most distinguishing classic cluster syndrome.

If the answer is yes....sorry, but you ARE one of us :(

You have found the web site that saved my life and took my sweet wife | supporter a long time to find. You are in good company here....nothin but love ;)

Dan

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What else is there guy's?

Some other things I can think of, which work sometimes for some.  Peppermint lip balm on the eyelid.  Sex (really--there's even a study of this), and other vigorous exercise, including for some people jogging.  Huffing cold air from an air conditioner (in the absence of more "normal" sources of oxygen from tanks).  For my daughter, when she could handle being touched I would "massage" her neck and shoulder and then circle my hands around her arm and run them down the arm with a firm pressure, kind of like trying to get the blood down into her fingers.  (Makes me cry, remembering, but it helped, or at least was a distraction.)

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What a good Dad you are CHF.

I've probably said it before, but if either my daughter or I had to have this affliction, I'm glad it's me rather than her.

I can only imagine the helplessness you must have felt before you hit pay dirt.

I'm glad to call you a friend.

Dan

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Hi Solace and the rest of the peanut gallery.

Let's just say The Shaggy has an aversion to doctors in this case.  I know, once you are diagnosed to rule out other stuff, then I have the aversion to doctors.  After reading a billion stories here and ch.com, it is relatively few people who have been helped by them with this condition.

My allergy doc said it sounded more like clusters than allergies and bingo, looked it up online and after 20 years I can safely say that I agreed.  Mushrooms work very well for me.

Also, sticking my head in the freezer helps a lot.  Sex helps too.  Exercise is a bit of a trigger for me.  Caffeine is usually very good right before my usual morning attack.  But I will emphasize that mushrooms have been the game changer.  I am not interested in any of the pharmaceuticals although I would probably BOL if it comes out and is not super expensive.  Oxygen works for almost everyone though I haven't used it the last 17 years.

So in conclusion, if you have clusters, yeah it sucks, but it is manageable.  You just have to be well stocked with whatever arsenal you choose.  It takes some of us many years to really figure it out.  If I were you I would try RC seeds, oxygen and caffeine, all easy to get and use.  Don't fear it, counter attack!!  >:(

Good luck!

--The Shaggy :D

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Hi Solace,

Welcome to the forum. Look how much really good advice you were given in just 12 hours time. You can't count mine 'cause I'm not really giving you any advice. Doing your own research and asking a team of Neurologists for answers, you wouldn't have gotten as much, and of such high quality, in 12 weeks. Everyone here understands what you're going through and is anxious to help in any way they can. Everyone here is either a cluster sufferer himself or is caring for someone who is. Most Clusterheads never hear about ClusterBusters. You're lucky, I feel, to be one of the ones who has. Feel free to ask questions about anything you don't understand or are unclear about. If you're uncomfortable asking about anything publicly, you can write PM's privately to anyone here. I may have missed someone else's recommendation, but just in case I didn't, the following video will provide you with an introduction to cluster headaches, clusterbusting and everything else we're doing here: http://vimeo.com/10918637. It is a talk given by our fearless leader and the founder of this website, Bob Wold. You're in good hands. You'll do fine. I wish you luck.

Ron

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