new here...

[greeneyes87]

My story starts on 6/9...I get an awful headache and decide to go home for the day.  The next day I was scheduled for a facial and massage and I thought great-maybe it will make me feel better.  Well it didn't and I left feeling terrible.  My headache continues pretty much non-stop... I finally break down and go to the chiropractor across the street from where I work on 6/15 because I am also very tight in the muscles in my neck and shoulder.  I am told I am stage two degeneration in my neck and need to continue to come and also start rehab to try and make it better.  By 6/20 my headache has still not subsided and I have a horrible attack while out driving on my lunch break so I drive straight to the ER.  No tests ran was diagnosed with a tension headache and given some cocktail and sent home.  Alas the next day headache comes back.  I finally get in to see the PA.  6/22 start trigger point injections and go through 3 rounds in the course of the next week but it doesn't help.  The 800 mg Ibprofen and mobic don't help...the flexeril helps some with my muscles when going to bed...  Still having headaches and get a really bad one on the day of my MRI 7/21.  It came back this week and is negative.  While that is a relief I still want answers...  I saw a new PA yesterday and after reviewing my file and talking with me he thinks I have cluster headaches.  I was told to keep a log for a month and come back to see him.  In the meantime, I have a started a 7 day steroid today and will start Nortriptyline tonight and see if any of that helps.  I have had the pressure in my head and eye all morning and have had two episodes of intense pain that last maybe 5 minutes.  Eye feels enlarged and waters and nose drips.  The lady I work with drives me nuts.  She does not understand at all the hell I have been going through for almost 2 months.  I have had migraines in the past and also a history of headaches but not like this.  Nothing helps... Glad to have found this site if this is what it turns out to be.  Always good to have support from someone that understands...Also sometimes when I get those attacks I feel like something is crawling inside my head and I feel like I am going crazy:/  Can anyone share with me how they felt when theirs first started out and if it sounds anything like what I am going through?  Was it always severe or gotten progressively worse since have noticed many say they have gone from episodic to chronic.

 

[spiny]

Welcome greeneyes.

I am glad that your MRI came back clear. It rules out other stuff, but does not say that you have CH.

Clusters normally last up to 3 hours, not all day. You may get many attacks in a day, but are pain free between them. Yes, you will still have muscle soreness even when the CH subsides. But the screaming pain is intermittent. Many begin with short hits of 5 to 30 minutes. That can get worse later in life.

If you look up Tirgeminal Nerve, you will see all the nerves that can be affected during a hit. There are three main branches and many smaller ones.

Normal pain meds do not help with CHers. Some may occasionally think that an Oxy or two helps. They are very few and far between. Some have had multiple injections of morphine in the ER with no relief.

Your quickest defense is an Energy Drink or Shot. Even a cup of coffee will help. All should be downed at the first sign of an attack. Next is to have O2 in bottled form available to you with a non-rebreather mask to breath it thru. An O2  concentrator is not going to give you 100% O2.

The steroid taper pack should provide relief the day you start it. It is often used as a bridging med until a med like Verapamil can build up in your system and begin to work for you.

There are some look a like headaches. paroxysmal hemicrania, short-lasting unilateral neuralgia headaches with conjunctival injection (SUNCT) and hemicrania continua.Some of these respond to Indomethecin. I may have spelled that wrong. Keeping the diary will help your doctor make a diagnosis.

The crawling feeling you mention is not something that I have had. Initially I had short visual disturbances. It is so long ago, it almost lost history!!

Not many actually go from episodic to chronic. Some have remissions of 18 months or years between episodes. Others are right on schedule from the start - every spring or fall say. Others report longer and stronger hits as the years progress.

Those who also have dealt with migraines report that CH is much more painful.

Let us know how you are doing after the Pred. you are starting today. If you feel a hit coming on, get some caffeine into you quickly. It really does help. If it is CH, there are several things that you can do to mitigate the pain.

My heart goes out to you. I look forward to hearing your update. And I apologize that I did not see this post sooner.

Hugs!!!

[greeneyes87]

Thanks for the response. I have had some pain free days and sometimes during the day they will go away but on my bad days the dull ache usually sticks around and then I get painful spikes numerous times a day.  I will look into the other things you mentioned as well. I have not yet been able to get into the nuerologist but they are working on the referral. Just would be nice to be able to figure out what is going on because my quality of life has gone way down since this started. Looking back I think this actually started before I thought it did. I got sick in May with a supposed sinus infection/viral and had bad headaches with that. I got better then got worse again.  I will update once I have been on the medicine for a few days. Thanks!

[xxx]

Hey Greeneyes,

Welcome to Clusterbusters...  I've sent you a message.  Check the envelop icon in the upper right corner of this window.

Take care,

V/R, Batch

[greeneyes87]

Well I started the meds on Friday...that was not a good day.  I was much better on Saturday which I typically am for whatever reason but neither night did I get really any sleep. Sunday I had some problems but wasn't too bad...I did sleep better but I chalk that up to the flexeril I took before bed because my back was killing me.  Yesterday however was not a good day.  Woke up with the dull pain and was feeling kinda lightheaded in the morning.  Around 1:30 I was starting to feel more pressure in my head.  By 2:30 my eye was burning and watering, my jaw hurt, my cheek felt numb, I was having a hot flash, and my head was throbbing. Was having shooting pains and burning in the back of my head as well.  I finally ended up taking out my contacts cuz my eye hurt so bad.  This lasted about 2 hours before I started to feel some relief.  Around 6 or so I started having sharp pains and ear pain with throbbing in my temple and my left eye even though I was in the dark seemed like I was seeing shadows and was very blurry.  This morning my neck felt really sore and I still had a dull ache in my temple.  I had a milder attack this morning with alot of the same symptoms but this time the pain shot down my neck.  This afternoon the pressure has intensified some and I have stabbing feeling in my eyes and back of head.  My cheek has again gone numb and my eye is blurry.  I don't feel like the steroids or the nortriptyline are helping although I don't know how long it typically takes to notice a difference... just feeling frustrated:/

[MoxieGirl]

Hi Greeneyes,

Headaches, in general, can be difficult to diagnose at times. I'll explain about my headaches, and see if my descriptions help you at all. 

First off, migraines run in my family, and I've had them off and on all my life. I typically would get hammered by them during times of stress (marital breakup, etc.) but then go into remission for years. Until 2007.

Dec 31, 2006, 10:00 pm I get a headache. Don't think a lot of it, but it is still around the next day (had a quiet New Year's at home that year, didn't drink). A few days later, still have the headache.

I get a migraine within a few days. Migraine lasting 3-7 days was not unusual for me, but this one lasted only a couple. Then I get this horrific headache beyond description that lasted an hour or so, then was gone. All the while, I still have the background headache that started on Dec 31st.

Eventually I haul myself in to see my GP and am diagnosed with Chronic Daily Headaches and Cluster Headaches (plus the already documented migraines). That one, single headache lasted 7 months! It finally started to break up a bit in July, and more in Aug and September. This whole period was punctuated with nearly weekly migraines, and one or two cluster headaches a week.

During this first year, my clusters were like clock work. Every Tuesday at 7:20 pm, and they'd last 1-2 hours of extreme pain. 

One particular attack felt like someone had hit me, hard, in the forehead with a baseball bat. Then, slammed a heavy crowbar into the crack in my skull and began splitting my skull open. I could feel the crowbar work back and forth, prying the bones apart. All the time, my eye was a ball of fire. Then, after a few minutes, the crowbar would be removed and the crack would begin to painfully heal itself. Then the crowbar would return. This lasted at least 30 minutes, and the pain was off my shockingly high pain threshold.

Sometimes my clusters would come on gradually, with a 1-2 hour headache preceding them. But normally, it is like being hit in the face with a baseball bat. The pain is usually a blinding, cold, white light. Sometimes burning hot, sometimes bitter cold. Always in one eye and on one side of the forehead. Although, that said, I have had 2 cluster attacks over the years that were bi-lateral. So either they were odd balls, or I had 2 attacks at the same time. Either way, I don't recommend it.

After the attack, I would always have a 20-30 minute post traumatic attack which involved intense crying and rocking back and forth. It is believed the hypothalamus triggers cluster headaches because it controls the body's clock, and is why you can almost set your watch by cluster attacks. They hypothalamus also controls our body temperature, and during these post attacks, my body temp would swing from hot to cold, and back again. 

A lot of attacks feel like a red hot poker, or spike is being driven into your eye. If you've ever had brain freeze, cluster attacks tend to be in the exact same spot, in that inner part of the eye just at the base of the nose. This is because when you eat something cold, the pain refers up the Trigeminal nerve to this point, and this is where clusters often attack. But a cluster is like brain freeze times 1000 and lasts 1-3 hours. Another way I think of them is like a muscle cramp. Have you ever had your calf muscle sudden cramp up? You're in absolute agony for 1-3 minutes, and the pain consumes your every thought, your every action. That is a cluster headache, just increase that pain 10 fold and put it in your eyeball for 1-3 hours. 

Another thing a lot of CHers report are Shadows. Some find shadows actually painful, like a normal headache the precedes an attack. They can come before, or after an attack, and hang around for days or weeks. To me, shadows are sense of foreboding, a heaviness in my mind and can actually take the image of a shadow in my thoughts. It's a demon just waiting for you to walk around the corner of the house and then pounce! 

When a cluster is gone, it's gone. No pain. there might be a lingering headache, but the cluster itself only lasts a few hours. 

Keeping a diary isn't important. It's vital. It is the most vital thing you can do (in my humble opinion). I've kept one of every headache I've had and every pain killer I've taken since 2010. This diary has helped me identify my triggers (lack of sleep, stress (to much and I get a migraine, to little and I get a cluster), getting to hungry, cold, etc.). 

The diary shows me that in 2010 I had 63 migraines and 42 in 2011. But after starting on the remedies you'll learn about on this site, in 2012 I had 3. In 2011 I had 257 cluster attacks, and that dropped to 169 in 2012. I can even project things forward, and predict that I'll have 51 cluster attacks this year. 

Ideas of things to track in your diary:

• Date/Time of the following events
• When you have a headache, and the pain level on a scale of 1-10
• What you eat and drink
• What pain killers or other remedies you take for the headaches
• What preventatives you take
• Your stress level on a scale of 1-10
• Your sleep (hours slept and how well you slept)

Hope that helps.

MG

 

 

[greeneyes87]

I was on prednisone 4 mg dose pk taper for 6 days and Nortriptyline 10 mg.  I wasn't sure which one was causing the insomnia so I have been taken off of that and started Carbamazepine 200 mg on the 3rd.  I don't think that CH has been ruled out but he is just going through everything it could be and ruling it out.  He has now mentioned Trigeminal Nueralgia but I am confused because I don't have any of those triggers...  I did ask him about indomethacin since I had read several things it is used to treat but he did not see that as something that would help me at this point.  He is trying to get me in to see a nuero that specializes in headaches before he sees me again in a month.  He has also given me a script for Butal-acet-caff to try and combat any severe long lasting ones.  I'm actually sleeping now and was feeling somewhat better until yesterday.  I had a dull headache most of the day but last night was awful.  I was screaming and crying and couldn't stay still.  Not neccesarily the type of pain you had described MoxieGirl but lasted about an hour.  My husband wanted to take me to the ER but I wouldn't let him.  I honestly didn't even want him beside me because I didn't want anyone to see me like that, although it was nice to be comforted.   Afterwards I was completely drained and my head still hurt-I ended up going to bed about 8:30.  Woke up and still have a headache   On another note I ran out of my birth control pills last Thursday.  For whatever reason the pharmacy hasn't gotten my refill done and I decided to just let it go until I see my OBGYN on the 15th to see if the hormone change helps at all.  

[CHfather]

Carbamazepine (Tegretol) is typically used to treat trigeminal neuralgia, and can be pretty effective for that.  For some people, the side effects can be a drawback (dizziness, fatigue, confusion).  If it's helpful to you, it won't result in a clear TN diagnosis, since anticonvulsants are also sometimes effective with CH.  My daughter was misdiagnosed with TN for several years, and it surprised me because the typical symptoms of TN and CH seem so different to me.  I don't think that hour-long attacks like what you experienced are part of the TN profile.  The only part of butal-acet-caf that might help CH (if that's what you have) is the "caf."  

I feel like you really, really need to see that neurologist, and we can hope that because s/he "specializes in headaches" you might get a more reliable diagnosis and maybe better treatments.  As Moxie said, keeping a headache diary might be the most important thing you can do to get effective treatment.  In your case, I would add a description of the pain (where was it, how did it develop, etc.) with each entry.

[greeneyes87]

I also did not think that CHfather and also as I mentioned before I don't have attacks from touching my face or tooth pain or anything like that.  I do know from talking to the doctors office today that the nuerologist has received my referral just has not had time to call me yet.  I hope that it does not take a long time to get in a see him.  I agree with you.  I would like for someone to have a better idea as to how to diagnose and treat me (if that's possible).  Last night I was really wishing I had oxygen because I got so worked up that I couldn't breathe.  

[spiny]

Tegretol is still prescribed by some doctors for CH. I took it for years and thought it helped. But, then the CH really got ahead of it and even at massive doses it did nothing but give me triple vision. Verapamil was much better.

TN, as you say is very different. A puff of wind can cause an attack, or eating, or anything really when it is active!

What you are describing sounds like CH to me, especially your report of last nights episode. Wanting to be out of sight is also common. We don't want our loved ones to see us in that state.

Having your hormones change may actually be affecting it sadly. I have read of several women who were pain free during pregnancy, but right back in hell after delivery.

Did you try the Energy Shot or any form of caffeine? It really does help. You might try melatonin 9mg to 25mg at night. Take about 30 minutes before bedtime. I have also found that if I am getting hit at a certain time of day, I can down some caffeine shortly before and it helps.

That 'dull headache' might be what we call a shadow. Caffeine will help that too. Or ginger in any form: tea, candy, or raw. Raw is H.O.T. In tea, you have to keep stirring it as is does not really dissolve.

Have you considered starting on the D3 regimen? It can help pretty quickly for many CHer's.

I hope that tonight is less painful.

[greeneyes87]

I had no idea that is what everyone was calling shadows.  I read a little more after reading this and realized you may be right about that.  It's not so much painful as just a really annoying pressure in my temple that rarely goes away.  Some days it will but then it comes back and I am on edge all the time when I start to feel intensified pressure or anything like that that I am about to get hit with something bad.  I had another attack last night but it didn't last as long as was not quite as painful thank goodness.  I have considered the D3.  I don't really do energy drinks and don't keep much caffeine in my house honestly.  But I may have to revisit this if it will help.  I do drink coffee at work and I drink tea... it doesn't seem to help though.  

[greeneyes87]

My attack today came with no warning. I went out for lunch and got hit while driving. Quickly pulled into a parking lot and sat there for 30 min:( It just made me feel so helpless and also scared. Scared to go anywhere and do anything:(

[CHfather]

A lot of people carry an energy shot with them because it can help in that kind of situation.  If you're diagnosed with CH, injectable sumatriptan will also be available to you to deal with those sudden attacks, and you'll carry oxygen in your car.  And of course you'll have better preventives, whether that's a pharma thing, D3, busting, or something else. It'll still suck if you get hit out of the blue like that, but it will be much more manageable for you.

[Scoobs]

Hey guys I'm a new member to the site but have read hours of material. I decided to make a profile and start contributing. 

Sept 23/16 was my first CH but at the time I self diagnosed myself as having pink eye. Went through a months worth of doctors and optometrists before one doctor put me on oxygen and said i might have ch. I found prednisone helps for a few weeks at a time pain killers like Advil and Tylenol help for a few hours sometimes longer. I'm actually really worried about how many painkillers I eat in a day it can't be good but I need it to get through the day. 

Can anyone tell me if being by the ocean helps I live in a fairly dry climate? 

Thanks for reading guys any input would be appreciated sorry for any spelling mistakes I'm pretty much one eyeing this and I know everyone knows what that means. 

[spiny]

Getting hit while out and about is really hard.

I really hope that you will start keeping an Energy Shot or three on hand and with you. You can also use V8 Energy if that goes down better. Not quite as good according to many people, but it works for me. I also carry caffeine pills with me. They can be purchased in different strengths.

Sometimes shadows can be warded ff by using a breathing technique where you inhale deeply and then exhale with force. You are trying to rid yourself of CO2. So, treat it like a breathing test. Exhale and add a crunch for starters. Then continue with deep breathing. Those short shallow breaths we tend to take when in pain are not the best thing. 

The anxiety and fear can eat your lunch, so the better prepared you are, the lower your stress will be.

Can you contact the pharmacy and get the old script for your pills? Tuesday is a long way off when you are hurting. That might actually help.

[spiny]

Drat. System lost my entire post!!!

Scoobs, I have not heard that living by the ocean helps. Especially with storms like hurricanes causing barometric pressure changes. That is a major trigger for many.

Have you read he O2 file in the Clusterbuster Files section of the board? What type of set up do you have now? Mask and flow rate matter a lot!

Pred is used as a 'bridging' medicine until a preventive like Verapamil kicks in. Tylenol and Advil normally do not help much if at all. Have you been prescribed a preventative at all? Pred. is not used long term.

You really need a Neurologist - headache specialist if possible -  to diagnose you. And get a scan done to make sure there is nothing else going on up there.

You might want to start your own thread so members can find it more easily. Your posts can get lost in an existing thread.

Oh, and welcome BTW. Sorry you need to be here, but you landed in the best spot!

[greeneyes87]

I am going to go get some energy shots today and try it next time.  Spiny this is just for my birth control.  I was already having the issues before stopping it.  Plus I was reading that with the low dose she had me on it wasn't as affective with the medication the dr gave me anyways.  I am going to call over today and get the nuerologists number today though since I still haven't heard from their office.  Would be nice to see them before my OB but that obviously isn't going to happen:/

[xxx]

Hey Greeneyes,

Have you asked your PCP for the 25(OH)D lab test? I suspect you're vitamin D3 deficient and that deficiency is contributing to the frequency, intensity and duration of your headaches.  You can download a copy of the anti-inflammatory regimen by going to the VitaminDWiki.com web site in the headache section.  You can also scan the following QR code with your smart phone and it will download a copy of this regimen. 

The QR code app is free.  It takes less than 15 seconds to download and install.  You can also past the following link in your browser to download this treatment protocol.  Replace the "•" with a period "." there are three of them.

http://www•vitamindwiki•com/tiki-download_wiki_attachment•php?attId=7708

Be sure to share a copy of this treatment protocol with your PCP and neurologist when you see one.  I also suggest you let your husband read it as well.  It will help him understand more about CH and what you're going through.

The following chart illustrates the favorable response times of 83% of 215 CHers taking this treatment protocol. It will give you an idea of what to expect after starting it. By favorable we're talking a reduction in the frequency of CH from an average of 3 CH/day down to 3 CH/week in the first 30 days.   Better than 54% of CHers starting this regimen experienced a complete and lasting cessation of CH symptoms.

There's one word of caution...  Vitamin D3 helps the entire endocrine system function more effectively...  That can easily result in an increase in fertility... 

Take care and please keep us posted.

V/R, Batch

 

[greeneyes87]

I'm not supposed to see my dr again until the 28th although I think I may have to ask them to move it up. I was have had multiple attacks the past couple days. Yesterday's was in the middle of Walmart. I got me some 5 hr energy shot while I was there so if I get another attack today I am going to try it. Question did your dr draw your blood and just run any type of regular panels? I have had no lab work done thus far and I don't know if that something the neurologist would do or if this is odd and should have been done already. I did look also for the things in the regimen I just am reluctant to try it until I see the dr:/ the carbamazepine has done nothing for me though even after upping the dose like he said so I would rather just not take it anymore...

[CHfather]

Many people seem to prefer the 5-Hour Energy very cold.

Blood tests won't really show anything headache-related, at least not that I know of.  If you can get a basic panel done, it will tell you what your vitamin D level is.

Please be prepared to insist on oxygen. Other things are important, but oxygen is essential if you have CH.  Looking back quickly over your posts, it seems that you might benefit from a pharma preventive also, such as verapamil (maybe I missed something).  If you feel like you need to wait for your doctor before starting the D3, that's understandable, but in my view unwise.  But I suppose Batch has probably told you something along those lines.  I'd bet 50 dollars right now that your D level is low even by conventional medical standards, and I'd bet $500 that it's low by the standard of what's needed to counteract CH.

[ClusterCured]

Hi GreenEyes,

I also have green eyes and cluster headaches, so we have a lot in common. As I have said in my other posts, I have been cluster free for two months now. I've had this monstrous pain for years that runs on cycles. I've been prescribed Imitrex, Percocet, and Oxygen, but none of that cured me.

After seeing 3 neurologists, I was so sick of the constant pain holding up my life, I did something drastic. I stopped eating all processed foods, meat, and dairy. My diet is fruit, vegetables, beans and rice. All I drink is tea and water. It was like a miracle. In two days they were gone, and during the summer, the worst time of year for my clusters. They've been gone for two months, and I have my life back. 

My mom had chronic migraines also. She changed up her diet. Gone. She was so upset she didn't try this when she was younger. No meds. No doctors. Are you ready to live again?

 

 

[greeneyes87]

I did seem to do better when I was eating cleaner but that also seems to be before these really ramped up. I went to my obgyn today and got my script renewed on the bc. She told me to start 400 mg of magnesium and 400 mg of riboflavin. She also drew blood to check my vitamin d levels. Last night I had had two attacks. The second was ugly and lasted about an hour. It was later at night and then I couldn't really sleep. Do you drink the 5 hr energy drinks even when it's late or in the middle of the night? Most of mine seem to hit during the day or evening.

[greeneyes87]

Also chfather I am sure this info is probably somewhere but what am normal standards for  D level and then what does it need to be to counteract the CH?

[CHfather]

Many/most people find they can drink an energy shot/drink at night and not be kept awake by it.

In the US, the low end of the "normal" vitamin D range is 30 ng/ml.  The average level of people responding positively to the D3 regimen is 81.4 ng/ml; the range of responsiveness levels is 34 ng/ml to 149 ng/ml.  

[greeneyes87]

Blood results came back and she said it was a little low but did not tell me what it was at.  She instructed me to only take 2000 mg a day.