Intrigued and learning... (Sinusitis??)

[adamryan]

I just stumbled across this site, and definitely excited about the vast amount of similar stories and information on here. I've only been reading for about an hour so I'm not completely up to speed with proper theories/diagnosis/treatments, sorry in advance.

So, before diving into all the details, has anyone else started out with a chronic sinusitis diagnosis first? 

I've had severe headaches around my left eye since Spring 2009, which results in debilitating pain and causes droopy red watery eye and sinus discharge. My father also has about a 10 year history of the same headaches. He was diagnosed with Chronic Sinusitis... I always assumed that was my diagnosis as well, and what my primary care doc has diagnosed also (although the initial diagnosis was migraines, I was given Imitrex tablets, did nothing).

Currently, I'm into my second week of daily episodes, which start around 9pm and have been lasting for 2h... 4h... 8h at a time. I recognize that everyone here understands what I am going through, but this cycle is my most severe yet. After reading a few stories, I feel very fortunate that this only occurs for about one month of the year.

For the past 3 years, I've started antibiotics when the headaches started causing me to miss work. 10 days of Clindamycin in 2014, 5 days Zithromycin in 2015, and now 10 days of Clindamycin in 2016. I'm on day 6, but had a very severe 8h episode last night. Then at work today, I came across this article here: https://my.clevelandclinic.org/health/diseases_conditions/hic_Cluster_Headaches

 

This actually fits my symptoms exactly...

I have been treating this as a sinus infection, which for me means:
Preventative: A/B's, netti-pots, sinus health supplements (Allerplex, seems to work great), lots of steam, vaporizors,
Abortive: Tylenol Severe Headache (Acetametaphine), hot showers, ice-packs on the forehead, caffiene, ice-cream on the roof of the mouth

 

The oxygen is the most intriguing thing I have ever heard and I feel like trying that and having success could rule out sinusitis...

And thanks for taking the time to read this! 
-Adam
 

[CHfather]

Adam, I can only give you a quick reply now.  It is completely common -- the norm, actually, for people with CH to be misdiagnosed and mistreated for years and years.  Maybe you can look at my reply just now to Deb's post to get a sense of some of the options (https://clusterbusters.org/forums/topic/4398-feel-like-going-crazy-with-these-headaches/#entry47630).%C2'> The duration of your attacks is not classic CH (your longer ones are longer than typical CH attacks), but let's discuss this more.  Nothing is really "typical" of CH symptoms and treatment.

[ChrisSelf]

I had my wisdom teeth pulled one year.

The following year went to an ENT who diagnosed me with polyps. My gp diagnosed sinusitis that same year. Lots of guessing going on.

Do some research and try to find a neurologist who specializes in headaches. None in my area do so I'm lucky enough that there's a medical school with good neurology department or I may still be chasing a diagnosis.

[CHfather]

There's a recommended doctor list by state (and province) here: https://clusterbusters.org/cluster-resources/

[adamryan]

Thanks for the responses and resources. I did see the response to Deb's post, I will also say the duration is typically 45 minutes, onset is rapid in about 10 mins, and dissipates just as rapid, and I will get them only a few times the rest of the year. But at the worst of the cycle, the duration has been prolonged, and multiple headaches per day. Can't drink alcohol, smoke, etc, for a few weeks till the frequency/intensity goes away. I think I'm past the worst of it for this spring, but still having issues and seeing doc's.

[adamryan]

My dad is a chiropractor, hes a big fan of supplements and he takes Allerplex and Euphrasia by Standard Process. Swears by them and is generally doing better but still has cycles where he can't drink, smoke, etc without triggering a headache. I like the Allerplex, 3 capsules 3x a day but I haven't been taking it since Nov-ish. Ordered a bottle this morning from the doc downstairs, but problem is also it takes a while to build up in your system, etc etc. If interested, curious your thoughts: https://www.standardprocess.com/Products/Standard-Process/Allerplex#.VxhLnPkrKHs

[CHfather]

I don't think you'll find many fans of Allerplex-type supplements for treating CH -- BUT you wouldn't have found many who believed the D3 regimen would treat it, and now it's pretty rare to find an informed person with CH who doesn't do that regimen. It does seem that allergies can fire up CH, for sure (histamines are related to CH).  The licorice root protocol helped several people, but it has kind of fallen out of favor -- not because it hasn't worked, but mostly because other things seemed easier and maybe better or more reliable.  https://clusterbusters.org/forums/topic/941-licorice-root-summary/

 

The percentage of smokers among people with CH is very high (and quitting doesn't alleviate it, at least for 90-plus percent of people with CH).  There are a whole bunch of triggers, and alcohol is definitely at the top of the list, but it's very rare to find a person whose CH is triggered by smoking.

[spiny]

Hi Adam and welcome!

 

What you describe is what many of us encounter before we get a correct diagnoses. Lets see: Sinusitis, allergies, abscessed teeth, cervical misalignment and migraines to name some. The above can and do result in lost teeth, sinus surgery, and lots of chiropractors.Then, we wind up with the wrong meds (Imitrex pills) and others that do not work.

 

A headache specialist is your best bet for a competent doctor. This site is the best, in my book, for actually helping people. You will learn a lot about what really helps and what is rubbish. You will likely find that D3 Regimen and O2 are your new best friends.

 

Keep reading and asking questions!

[ThatHurtsMyHead]

Adam,

 

Yep Sinusitis was my first docs (incorrect) diagnosis.  Stuck for about 10 years before I figured out it was CH on my own.   The triggers you list (with onset and duration) all sound like CH.  You really need to hear that from a neurologist first though.  Great advice above.

 

J

[adamryan]

Hello again, wanted to update those who are checking in on me (thanks again). Last night was OK but I did have two 10-15 minute episodes this morning at 5am and 7am. Aborted them by eating some icecream, taking a hot shower till the crescendo, and then icing my forehead as I went back to sleep. This afternoon I'm in and out of feeling completely normal and feeling the beginning of slight pressure. But I am hoping I'm making my way to the end of a cycle.

Stopped into PCP today to ask about O2 and also to explore cluster headache diagnosis. PCP says O2 has lots of side-effects, dependency issues, dangerous, she said it would unusual for a PCP to prescribe so I asked for a referral to a Neuro. She sent me to get blood work done again just to establish the info for the Neuro, and told me to keep a good headache diary (no problem there).

So basically, she wants to try treating it at trigeminal neuralgia and gave me a two week perscription for an antispasmodic called Baclofen. Basically want to rule out trigeminal neuralgia. The pills cause muscle relaxation, but can cause drowsiness, confusion, react with alchohol, all sorts of bad stuff. I was hoping the O2 would be easier/safer.

 

Will research the D3 regiment, I did grab some generic B12 and D3 vitamins today when I picked up the script just based on a few comments I read last night.

[Dallas Denny]

G'afternoon Adam Ryan

Unless you have some underlying condition (copd)that contraindicates O2, your PCP is misinformed, full of chit, or both!!

However, you needed a neurologist referral anyway for an MRI to rule out other nasty stuff and to get a firm dx!

Dallas Denny

[CHfather]

:angry: :angry: :angry:  

 

OMG, this is so wrong on so many levels.  It makes me want to scream and it makes me want to cry.  It's fine for your doctor to say "I don't know anything about oxygen for headaches, and I'm not going to bother learning, so I won't prescribe it."  That is the fact.  The dependency and dangerous stuff is outrageous camouflage for that unknowing and unwillingness to learn. EVERY serious article about CH recommends O2, particularly because it has no adverse effects except in the kinds of extremely rare cases that Denny is talking about.

 

The symptoms of trigeminal neuralgia are completely different from CH symptoms.  I presume you've done your googling and know that for yourself.  Yes, the diagnoses get mixed up by -- again -- unskilled and unmotivated doctors.  And baclofen isn't a first-line treatment for TN in any event.  You can also look that up. Anticonvulsants, not antispasmodics, are the first choice.

 

Not to mention that baclofen is also used sometimes to treat CH.  So, if it helps you, you are not ruling out CH or ruling in TN.  You're just wasting time and probably suffering needlessly.

 

Like I told you, instead of the ice cream and all that, please try an energy shot first.  And speaking of hot showers, there have been one or maybe two people here who have treated their CH by filling a tub with water as hot as they can stand and then putting their feet in it.  BUT, dammit, no one should need to do that kind of stuff when oxygen will treat it, and other practices, from the D3 regimen to pharma drugs, can help prevent it.

 

Be sure to get your vitamin D level done as part of your blood test. It's pretty standard.  Your D levels will be either low, or very low.  I guarantee it.

[Psiloscribe]

As Denny and CHfather have said, your PCP is very misinformed. This is why so many people go so many years going from one bad diagnosis to another.
02 is the safest thing your PCP could have prescribed and Baclofen will not differentiate between TN and CH.

Bob


.

[adamryan]

Thanks Gentlemen,
I agree about the misdiagnosis, she just doesn't have the experience in this area, always trying to prescribe Imitrex and anti-depressants. I'll continue to push for O2 or just go the welding O2 route.

 

Started D3 yesterday (4,000 UI/day for now) and have not started the Baclofen - I want to see if I improve on the D3, less pharmas the better for me. I still have 3 days of Anti-biotics left, not that I think thats helping.

 

I read on the Vitamin D3 regiment that I should see some decrease in severity and frequency within 2/3 days. So, here is how Day 1 went:

Last night, had an short episode at 9pm (aborted with ice-cream, hot/cold shower), and then another severe but short 15 minute episode at 10pm.
Again, 6am this morning, a 10-15 minute episode (short and not too severe) aborted with ice-cream on the roof of the mouth.
At 9am on my way to work, started to get one and turned around. By the time I got back home it had passed, so I am at work now.

I can say these episodes were all less severe on the pain threshold. Where I have had a few 10/10's the past week, these were really like 5/10's.

[adamryan]

Oh and CHFather, I will try the 5 hour energy. I have been drinking Redbull and I find it helpful sometimes, but perhaps the 5h energy is a bit more effective. Definitely easier to carry that around.

 

I must be unique in aborting my headaches with a hot/cold shower. As soon as I feel it coming, I get home and jump in the shower, sooner the better. I start with the shower very hot hitting my left eye and forehead. After a minute, I change the temperature to freezing cold, and keep it there for 15 seconds or so, and then go back to hot. I repeat this until I reach a tolerable threshold for the pain, and then I get out, eat ice-cream, ice my head until the pressure moves to the eat, jaw, and then poof disappears.

When very hot water or very cold water is hitting my head and face, I am a bit numbed to the pain. When its really severe, the shower doesn't provide much relief but its all I have right now.
 

[CHfather]

Good for you for persevering while you look for the right help!

5-Hour Energy actually has more caffeine than a RedBull, and the caffeine is the principal factor in effectiveness.

I doubt that you'll see any effect from the D3 regimen at 4000 IU/day -- but maybe you are seeing something (so darn hard to tell with CH), which would of course be great.  And it's considered important that you do the whole thing, all the supplements, not just D3.

[adamryan]

I'll take your advice to heart and get the rest of the suggested regiment today. I'll let ya'll know how it goes, thanks, feeling very optimistic about it.

[adamryan]

Also got a MM last night around 8pm. Had lots of friends over, went out to the bar (wasn't brave enough to drink) but I had the dose right, had a good buzz like I had a few IPA's. Head felt great, I read another post were someone described it as earthly vibes, I agree. I had a lot of fun with my friends, no anxiety about being away from home. Went to bed at 4am, woke up suddenly at 9:30am and had a feeling a headache was coming, 5 mins later it started - I drank half a 5 hour energy (extra strength), ate icecream, then a hot/cold shower, lasted about 15 minutes. But overall doing well.

I think its more than coincidence that the headache frequency is decreasing and intensity dropping. I bet I have one or two more really bad ones coming, but hopefully the D3 helps. I am now taking 10,000 UI/day. 

May be brave enough for a beer this afternoon, probably not because I'm pretty happy to just be functional for the whole day. The past 2 weeks the headaches have not had a noticeable trigger (besides the time of day), but alcohol has traditionally been the trigger for me. I saw the advice in another post about waiting to be PF for 2 weeks before alcohol, I should listen.

[adamryan]

4/23 Friday
Had a redbull-vodka at lunch. Set my stopwatch, like clockworh 1h 15m later, felt the "itch" as we were starting to play basketball. Took a 5h energy immediately, walked home and jumped in the shower. 15 minutes later I'm good again and heading back to the court. 
Finished playing, and when I returned home around 5:30 I got another 15 minute headache.
Had a 30 minute one a few hours later around 7.

Went out with friends, didn't drink, was fine the rest of the night. 


4/24 Sunday
First morning without a headache in a while, and is also last day of Antibiotics.

Drank a Harpoon IPA at 3pm. Headache begins 45 minutes later, lasts 20 minutes, pretty intense for a few minutes there.

4/25 Monday
Only one headache (no known trigger) at 11:07pm. Lasted 20 minutes, started slow and mild but gradually picked up (KIP 7).

4/26 Tuesday
Headache at 3am, 15 minutes, Kip 6.
Half a chocolate M truffle at 6:30pm. Going out for a bit.
Rest of the night was fine.

At least they are shorter. I was dealing with 2h-4h severe attacks at KIP 9/10 just one week ago.

4/27 Wednesday
Heachache at 6am, 15 minutes, Kip 6
Heachache at 7am, 15 minutes, Kip 7/

[CHfather]

The energy drinks do not work preventively (if that's why you had one at lunch). 

[adamryan]

I updated my previous post on 4/23 with a daily log.

Compared to where I was when I signed up on 4/20, I am much improved. Some is because I have a short cycle, a lot is avoiding alcohol which is still guaranteed to trigger one, and the rest I will attribute to the D3 and multivitamin. I have gone days without Tylenol/Acetametaphine, which my first advice to someone new to this would be to forget about it during your cycle because it is just not effective enough for the damage it does to your stomach/liver/kidneys whatever. It's tough, I am still carrying them in my pockets everywhere, but I have just been desperate for some relief.

The next best advice - build a toolbox with lots of alternatives. It helps having options when it gets bad. For me, I have not noticed any effect for the energy drinks to abort, but I'll keep those in the house (probably more effective not during the cycle). I like the portability of the 5H extra strength.

Overall for me, stimulation of the nerve with hot and cold is working the best - via showers, ice-packs, hot-packs, and ice-cream (basically inducing brain freeze).

Still haven't started the Baclofen, Thanks for your help so far, I'll try to stick around and return the favor.

[adamryan]

4/28 Thursday
3 headaches, 1am (Kip 6), 3am (Kip 6) 6am (Kip 5).
Then, I had a regular person's headache from 7am to 2pm from not getting enough sleep probably.

4/29
No overnight headaches. Slept through the WHOLE night.

 

Here is what I am currently taking (using Allerplex, a D3 supplement, and a B12 supplement):

Vitamin D3.....   10000 UI/Day
Vitamin B12...    2000 UI/Day

Allerplex:
Vitamin A ......   1575 UI/Day
Vitamin C.......   12 mg/Day
Calcium.........    60 mg/Day
Magnesium...    36 mg/Day


Looks like I should increase calcuim/magnesium, add vitamin K-12, and maybe a multi-vitiman for the zinc/boron. Thanks for your help!

[spiny]

That is fantastic Adam!! For some the D3 is magic. Yes, do up the calcium and add the K2. What about Omega 3? I am short on research time at the moment and can't check out the current info, but it was originally part of the regimen. There are many of us who stay on the D3 year round because it is good for you even without CH. 

 

I would avoid that alcohol trigger till I had two weeks PF under my belt. Why annoy the beast when you are trying to kill it, right?

 

ATB

[adamryan]

Hello - been meaning to post an update. Been keeping busy now that I'm doing better, trying not to take it for granted but you know how easy it is to temporarily forget about clusters when your not in one.
 

 

Just had my first nuero appointment today, must have got lucky cause he is clued in. Diagnosis based on previous documented history, prescriptions for verpamil and imitrex nasal spray - O2 if I want it. Scheduling an MRI...

Last headache I had was on May 7th, been PF since. This neuro appointment I made during my cycle, I figured I would follow through and get some tools for next February/April.


Mostly done with the vitimans these days, but I recommend the regiment to anyone who is suffering, I believe it helped me.

Thanks for all the help, hope my story helps some people here.

 

-Adam

[spiny]

That is great that you have a neuro now. An Mri is a very good diagnostic tool to rule out other conditions. Always a good idea to have one.

 

And it is wonderful that you have reached PF status!!!! Congratulations. The end of a cycle is something to celebrate.