Newbie here from Iowa

[Jeler]

Have experienced cluster headaches for 15 years now. Finally went in to neurology for exam. Diagnosed as cluster headaches. I started on a small dose of prednisone for 5 days, a week later began 100mg verapamil 3x/day. Those doses began 20 days ago. I have not noticed any significant reduction in headaches (average 4-6/day) and is very, very depressing. If things do not improve soon I might have to search for more professional help. But for the time being I'll continue on with my research here.

I've visited other forums/sites but ClusterBusters seems to contain much more information and it's also very active. Have been reading thru some of the topic's/messages here and have found a vast amount of information. Of course I need to study more here and figure out what all the acronyms stand for!

Thanks so much for making this forum available.

This is my 1st post so I hope I've posted it in the correct board.

Jeff from Iowa City

[Freud]

Hi Jeler,

welcome to the board, sorry you have to be here. A few things:  Firstly your neuro should have prescribed 2 things. One, high flow Oxygen Via a NON-REBREATHER mask @ a minimum of 15-25LPM. Most of us prefer/ require 25LPM. This usually requires you to buy your own regulator. Oxygen typically aborts a CH in 5-15min. You stay on it for an extra ten min or so once the CH aborts. If you don’t have insurance there are other options like welding oxygen setup and you buy your own regulator. Regulator you’d need click on the 0-25LPM choice then you buy the CH (cluster headache) mask setup Cluster mask O2 kit w mouth piece  If you do get oxygen from a medical prescriber you want to make sure the supplier you use has M tanks and E tanks. I keep a big M tank next to my bed, one down stairs. And now one in my car. If there isn’t room in the car for the big M tank I take several E tanks w me. I suffered with out oxygen for the first year I had CH. I’m chronic CH so it started about 2 years ago and I don’t get cycles it’s an every day thing...  I can’t say enough about oxygen!  Secondly, sumatriptan injections not pills to abort the really really bad attacks. Sumatriptan if over used can increase intensity and duration of cycles if you’re episodic. I use mine sparingly. You only get 10-16 a month and I get 200+ CH a month. I save them for when I have something important to do and I can’t bring my oxygen w me.  They usually work in ten min or less. Rarely as much as 15-20min for the real bad kip 9-10s (look up KIP pain scale for CH). 

PSA over :-). Now getting to your current treatment plan. Some people do respond to verapamil like it’s a miracle drug but not most. However you’re dose should be titrated every 7-10days by 80mg increases. Most people that find relief w verapamil need doses as high as 900+mg/day. The immediate release has been shown to be more effective than the sustained release form. You should at a minimum have an EKG done every time they increase your dose to make sure you don’t get heart block. I strongly suggest getting a cardiologist to follow you and make an appointment for a blood pressure check and EKGs. I was on as much as 800mg a day (couldn’t tolerate more, got blurry vision), did that for a year, wasn’t helping, I developed CCB (calcium channel blocker) related peripheral edema. It was significant, put the water in slowly over time couldn’t figure out why I was gaining so much weight. Then all of a sudden I woke up and my legs were huge w edema like a heart failure patient (I’m. Cardiac surgery Physician assistant). I halved my dose, called my cardiologist with my self diagnosis and he agreed time to stop completely. Since I came off a few weeks ago I lost 13 Lbs of water!  I still recommend trying it but you can’t give up until you’ve gotten to higher doses. MUST have your EKG and BP followed!  Steroid tapers can work for some. Some people get a break and the CH comes back as soon as taper is stopped, others can abort a cycle. Steroids should not be used long term, and they are not benign. Several members here have gotten AVOTH (avascular necrosis of the hip) femoral head dies from lack of blood supply over a period of time and necessitates a hip replacement. It is very rare but does happen. 

Besides professional help, although many headache centers and docs support what we do here. This site was created to educate and advocate for “Busting”. Please click on the new user blue button on the top of the page. Read everything!  Then make a post on any of the private boards, usually theories and implementation...  we don’t discuss busting much on the public board.  There are other tips and tricks like energy drinks or shots. They don’t work for me but others swear by it. If you want a good laugh search this site for “cure” and look through the 27 pages of results. I started w the oldest post first and went from there. People have tried almost everything you can think of like drinking their own urine to hot pepper sprays in the nose and a lot of others. But I can say this for certain this site and busting has saved lives, gives people hope (you’re not alone) May think about attending the national conference in Dallas this sept 19-22. There will be a lot of survivors there some with 20-40+ year histories!  And lastly there is @Batch‘s Vitamin D protocol w cofactors. He has stated it can be just as effective as busting (helps about 80% of us I think) it does require some lab tests your primary or neuro need to order)but I’m sure he will chime in and make suggestions.  I’m sure I’ve left something off but this is a good place to start. Please click on that blue button and dive in head first. Looking forward to hearing more of your story and questions. 

 

Pain in free wishes (PFW)

 

Brian

Edited July 13, 2019 by Freud

[dmlonghorn]

You've come to the right place. We're all "like-minded"  individuals.

It can seem like learning another language, but with enough research you'll begin to speak it (after 15 years  you have a good start)

The best place to start on site is the "new user read here first" link at the top.

Good luck keeping up the fight.

-dm

Edited July 13, 2019 by dmlonghorn
See, just listen to Freud ;)

[Freud]

3 minutes ago, dmlonghorn said:

We're all "like-minded"  individuals.

We are? Lol JK

[Freud]

I forgot to mention if you do get sumatriptan injections ask to get the 6mg/ injection auto injectors. You can take them apart and get 2-3 doses out of each. This way you would double to triple the amount of injections you get. I can walk you through this and steer you to some YouTube videos if you get them. 

[MoxieGirl]

Hi Jeff,

A fellow Iowan! WooHoo! And welcome. Glad you found us, sorry you have to be here.

I'm originally from Fairfield, went to Uni in Ames, and lived in Cedar Rapids for awhile. Spent many of my teenager years in Bloom County (the 100th Iowa county).  That said, I live in the UK now. Long story.

Feel free to ask any questions, the people here are awesome and saved my life once when things were really bad. It has a very active core group of people, and I pop in from time to time if my head isn't hurting too much. You won't better information, or better people, then on this forum. 

The ClusterBuster Files section has some good sources of information. The key files (the numbered ones) are probably out of order, but well worth a read if you are considering non-doctor-prescribed options. 

Mox

[CHfather]

Jeler,

You've got great advice here so far.  Plenty for getting on the right track. Some of the same information is repeated and expanded in this post, along with more detail about things that might help with the pain while you're taking care of the critical things: https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/

2 hours ago, Jeler said:

I might have to search for more professional help

Yep.  Your doctor isn't very good.  It's great that s/he diagnosed your CH at your first visit (assuming that you actually have CH*), but the prescribing . . . not so good.  You might be able to get by if that doctor will listen to what you tell him/her that s/he should be prescribing, because we can help you with that, right down to what a prescription for oxygen should say.  But if this doc resists O2, higher doses and proper administration of verapamil, and injectable sumatriptan, you need to look elsewhere fast.  (You might not need the verap in the long run as you use the D3 regimen, but that's a different matter.)

* Given the symptoms you describe, it's possible that you have a CH "lookalike" condition.  Tell us a little more about your symptoms and when you get your "headaches."  The "lookalikes" have a straightforward treatment, a medication called indomethacin, and some people think it should be tried early after a CH diagnosis to rule out the "lookalikes," which are called hemicranias.

20 minutes ago, Freud said:

if you do get sumatriptan injections ask to get the 6mg/ injection auto injectors

This is basically good advice, and it's probably what a doc would prescribe (Imitrex).  But you can get sumatriptan in vials, with syringes, to measure your own injections, and that's a lot easier than disassembling the autoinjector.  

[CHfather]

12 minutes ago, MoxieGirl said:

The key files (the numbered ones) are probably out of order, but well worth a read if you are considering non-doctor-prescribed options. 

Moxie is a great source of advice.  I just want to mention that the "key files" she refers to here are linked to in the "New Users...." info link that is at the top of each page in blue.  Didn't want you worrying that you might have missed some critical information.

[Freud]

And none of us mentioned everyone with CH or a look alike (they all fall in a constellation of disorders called TACs triginal nerve autonomic cephalgias) you should have your noggin scanned to rule out a treatable aneurysm....

[Jeler]

Thank you so much for all the information. Its truly over whelming the information everyone has provided. I all like to hear positive feedback. The clinic I go to and the professional I am currently seeing (just one initial visit and a couple phone calls to discuss my progress) specializes in headache research so I'm under her care for now. On my next visit I will mention the auto injector (imitrex) and a scan of the noggin!   She has all ready discussed O2 being the next step.

Yep.  Your doctor isn't very good.  Everyone is in titled the their own opinion I guess.

Just doing as I am told by a professional in the field and the discussions I have had with her made me feel quite comfortable.

Jeff

[Jeler]

CHFather,

Look a likes? New to me! Thank you!

My symptoms very but I generally get a visit from the beast in the early morning from 2AM-9AM. The pain is sometimes tolerable without sumatriptin (25mg). I'll first start off with

using a netty pot with warm saline solution (I always have one nostril completely blocked), my next step is a warm shower followed by lying on a cool floor in a dark spot with Ice Packs.

 Normally after 30-45 minutes I start to feel relief. Pain levels vary from what feels like a sinus headache to a stabbing pain in either my left or right temple. I am keeping a log for myself and my professional to study. Generally I get hit in the mornings 2-4 times, then nothing until later in the day. I also found that almost immediately after eating dinner an episode would begin.

Painlevels very on a scale of 1-10. Anything around 3 is tolerable, but when it climax's above that closer to 7 or 8, the fun to battle it starts.

I quit drinking any alcohol for over a month now, because it with out a doubt would trigger a CH. This past week I discovered that natural stevia extract was also an instigator.

Slowly learning as I go along here and again I appreciate all the inforrmation.

Jeff

[CHfather]

3 hours ago, Jeler said:

Yep.  Your doctor isn't very good.  Everyone is in titled the their own opinion I guess.

The standard pharma prescriptions for CH are verapamil as a preventive and oxygen and injectable sumatriptan (or triptan nasal spray) as abortives. Prednisone is sometimes used, though a five-day course is very short. Usually, verapamil is started at the same time as the prednisone, because the prednisone can stop pain (usually temporarily) while the verapamil takes effect.  Verap effects should be monitored with ECGs. Verapamil doses should be increased every 10-14 days, but you've been 20 days with no increase (and no ECG?).  Oxygen isn't a "next step," it's a first step. Apparently you have sumatriptan tablets, which have been shown to be useless. An MRI is standard procedure.  All of those things are written up in all the standard medical references for treating CH, and your doctor followed none of them.  That's the basis for my opinion. (My daughter, who is the person in my family that has CH, was very comfortable with the fancy downtown neuro who diagnosed and treated her for many years on the basis that she had trigeminal neuralgia, which was a ridiculous diagnosis.)  (BTW, doctors don't recognize this (it's not in the literature) but it has been noted within the CH community that "immediate-release" verap seems to work better than the extended-release kind, so you might ask for this if it's not what you're getting.)

You definitely have CH-like symptoms. OTOH, restlessness/inability to be still during an attack is actually a clinical indicator of CH, and what you describe is different from that.  Do you have these overall symptoms year-round, or do they come in cycles of some weeks or months and then go away?

Whatever it is you have (and I'm definitely not saying that it isn't CH), you've been suffering way too much. I'm glad you found your way here.

3 hours ago, Jeler said:

This past week I discovered that natural stevia extract was also an instigator.

 If you haven't found your way to this list of possible triggers from the doc I linked you to before, you might take a look: https://clusterbusters.org/forums/topic/4568-triggers/   Since you get hit after dinner, some of the food things might be particularly relevant. MSG, which is in a lot of foods, is a particularly bad actor.

You should start the D3 regimen right away.  Linked to in that doc from my previous post.  Could help you pretty quickly (10 days/two weeks or sometimes less), though it doesn't always work so fast.  Top-line immediate things you could do, in my opinion, (all listed in the linked-to doc from my previous post) are to try an energy shot (such as 5-Hour Energy) at the onset of an attack, take Benadryl 25 mg 3 or 4 times a day, and try a pretty high dose of melatonin at night since your attacks tend to be nocturnal (starting at maybe 9mg of melatonin and working up as tolerated), drink lots and lots of water, and see whether you can identify any triggers. If you do melatonin at night, don't also do the Benadryl. Some people find that sleeping more upright (for example, in a recliner or even in a chair at a table with pillows) reduces nighttime hits.

Edited July 13, 2019 by CHfather

[MoxieGirl]

Oh! Good to know CHF. You can tell how long it's been since I've checked out the files section. hehe

Jeff - you may find some knee-jerk negatively to doctors in general on this forum. If not from others, certainly from me. I can count on 2 fingers how many doctors have impressed me and earned my trust in relation to headaches. I drove home in tears on Thursday after seeing a 'headache specialist' who failed to listen to what I was saying or respected the fact that I know my body, and my headaches, far better than she ever will. 

If your doctor is good, that's awesome, and rare. Don't let her go if you get on with her well and what she prescribes works. If you follow the typical path, you will get prescribed one thing after another as each one stops working or the side affects become worse than the clusters. This process might take months, might take years. And I'm not saying it isn't worth doing, some people get considerable success from what doctors prescribe. So you have to be willing to try it. 

I played that game for 5 years until I literally had my calendar in my hand (well, on my computer screen) and I was picking a date on which to exit planet Earth. Then I remember someone once told me about this forum, and I'd bookmarked at as 'my last resort'. I decided to give myself 1 more year to find a solution to the 5 clusters I was having a day, and spent the next few weeks reading the above mentioned files and asking questions. By the time I had weened myself off Topiramate, I had my own solutions in hand and was ready to try them. 

That was nearly 8 years ago. I now get about 3 cluster attacks a month, each one lasts 1-5 minutes and barely makes me pause from whatever it is I'm doing. The pain scale is usually a 1 or a 2. A few times a year I'll get a KIP 6 or 7 that'll last 30 minutes or so.

There are answers out there, and solutions that work. Your mission is to find what works for you.

Mox

[Jeler]

Moxie

Thank you for the information, I know exactly what you are speaking of. Esp. about exiting planet earth! Just crawled out of a dark walk in closet armed with my now luke warm ice packs!

So glad to hear you've found the help you needed, I'm jealous. But I strongly feel my time will come soon too.  I always give my doctors the benefit of the doubt to begin with, but have struck out on an occasion with a few. Bedside manner, eye contact, education, expertise all play a major role along with a vast of other criteria. Recently had an appointment with a practitioner in cardiology and he didn't ever make eye contact nor listen to what I had to say. His 3 strikes all came on my initial visit.

I've started a list all ready of questions/suggestions for the neurology dept. here in Iowa City. Really don't want to wait till my next appt. in 10 days, so I'll make a phone call on Monday.

Forum and responses I have received here have helped me immensely.

As usual it's a hot 92 degrees in Iowa today and quite humid! Don't you just miss it? LOL

Thanks again

Jeff

[spiny]

Since your Verap is taken three times a day it likely is not EX or ER - or Extended Release. I used to take mine noon, 6pm, midnight. I was almost strictly nocturnal, so I tailored the meds for those hits.

It will say on the script if it is EX or ER. Long acting is normally taken twice a day. Are you still on the Pred too?

[Jeler]

Spiney

You are correct my Verap is not EX or ER. I've been taking mine at 6AM, 1PM and 9PM. Adjustments to when I take them would no doubt help. Thanks

No, I'm not on Pred now. Took 40mg/day from June 14-June 19 2019. Helped a bit, high anxiety level too.

Jeff

 

[MoxieGirl]

Jeff,

The only thing I miss about Iowa is harvest season. What passes for watermelon here in the UK is about the size of a good cantaloupe we'd grow on the farm, and cantaloupe are about the size of grapefruit. And it's nearly impossible to buy corn on the cob (which they call sweet corn) that hasn't been shucked and wrapped in plastic. But, I don't miss the heat, or the extreme cold. It's due to get up to a sweltering 75ºF this week. I don't think it's been any hotter than that at all this year, maybe one day. Summers tend to be in the 60's, right where I like it. 

That said, I really don't like winters over here. Sum comes up about 9:30am, and sets by around 4pm. Which means you are ALWAYS driving in the dark. And for someone with light sensitive migraines, that's not fun. But, summers are fantastic in that it's only absolutely dark for about 4 or 5 hours at night.

Mox

[Rod H]

Jeff fellow Iowan here. I'm in Winterset. Moxie uni is in Cedar Falls isu is in ames.  But everyone knows iowa city is where the best college is at. Jeff I've been battling the beast for 18 years. This place has definitely given me some pain free time. Read the whole sight and ask away we are here to help.

[Jeler]

Rod

Hey, thanks for the welcome! U of I grad here, Wife is an ISU alum. Just getting used to navigating around the site and welcome the vast amount of info here!

I actually live just north of Iowa City in the country outside of Solon and Lake MacBride.

Have a great day and thanks again

Jeff

[Rod H]

Welcome. I usually check in every 3 days when I'm out of cycle. Daily when in, which I'm not. Hopefully with what you gather for an arsenal here you can extend your time between attacks. That being said if you need someone to vent to I get it and I'm close. I've never met anyone else with clusters personally. 

[Freud]

Ooo if either of you have never met another Clusterhead I think you two should meet up for sure. I was put in touch w a fellow NJian by DD. He was in a bad place we met, I helped him with busting and we have become good friends.  He is episodic and gets hit every 3 years. I’m chronic but we still suffer the same thing. I think if you have some one close it can make all the difference. For this reason several people have said it’s important to go to a  conference it’s important to meet others that know what you’re going through and have been living w CCH in my case for decades. You never know when you’re going to be at your wits end and another cluster head pops bye and makes your day. Gives you the strength to see beyond this cycle...  my 2 cents...

[MoxieGirl]

22 hours ago, Rod H said:

Jeff fellow Iowan here. I'm in Winterset. Moxie uni is in Cedar Falls isu is in ames.  But everyone knows iowa city is where the best college is at. Jeff I've been battling the beast for 18 years. This place has definitely given me some pain free time. Read the whole sight and ask away we are here to help.

Ah.. just to clarify. I studied (or at least started studying) Aerospace Engineering at ISU after high school. I quickly figured out I didn't really know how to study and had just skated through high school, and a university of 27,000 students was too much. So I transferred to a small university in Arkansas and studied aviation and drama (got my pilot's license there). After living in Dallas for awhile, then spending far too long in the Air Force, I moved to Cedar Rapids where I lived for a few years before moving back to the England. 

I have a lot of respect for the University of Iowa, but Ames is where you want to be for Engineering. 

Mox

[Rod H]

On 7/13/2019 at 9:37 AM, MoxieGirl said:

Hi Jeff,

A fellow Iowan! WooHoo! And welcome. Glad you found us, sorry you have to be here.

I'm originally from Fairfield, went to Uni in Ames, and lived in Cedar Rapids for awhile. Spent many of my teenager years in Bloom County (the 100th Iowa county).  That said, I live in the UK now. Long story.

Feel free to ask any questions, the people here are awesome and saved my life once when things were really bad. It has a very active core group of people, and I pop in from time to time if my head isn't hurting too much. You won't better information, or better people, then on this forum. 

The ClusterBuster Files section has some good sources of information. The key files (the numbered ones) are probably out of order, but well worth a read if you are considering non-doctor-prescribed options. 

Mox

 

[Rod H]

2nd paragraph uni is not in ames. 

[Rod H]

Tell ya what meet me at hickory park and Ill buy.