Jump to content
ClusterBusters
Headache-dude

New cluster headaches

Recommended Posts

Hi everyone, recently over the summer I got my first cluster headache attacks. I spent 2 months in constant pain and nothing worked to kill the headache. One day it just disappeared but not completely. I had 4 weeks of relief but I have a weird lingering headache that doesn't hurt(but is uncomfortable) all the time. Recently mid way through November the headaches are back but I think I may have chronic because it never stops. Its a constant burning behind my eye going down to my ear,nose,head, and it lasts 24/7 without relief. I take 0.75 ml of CBD rn and some ibuprofen for the pain but it does nothing. A crapload of meds from the er that didn't help but got me rly high, and was prescribed verapamil but don't think I will try it. I am looking for magic mushrooms at the moment but am thinking of growing for myself. I also have a bottle of tramadol from the er that they prescribed and it doesn't do anything. Where do I start and where do I begin trying to bust the headache my doc won't write me a prescription for oxygen and no doctors are any help at all. I want to finish school and can't at the moment. Please help! I don't know how long this headache will last if it is anything like the last one it will be more than 2 months before relief.

Share this post


Link to post
Share on other sites

First I would try and find a neuro that specializes in headaches. Any doc that won’t write for O2 is useless. iMHO. I would give the verapamil a fair shot. It needs to be titrated to a fairly high dose to get relief. You will need to go for EKGs and blood pressure checks while ramping up the dose. It has helped as many as it didn’t from ancendotal reports and is the first line therapy along with oxygen and injectable sumatriptan. A fairly high taper dose of steroids is often tried in the beginning and can help many. There is the D3 vitamin regime along with energy drinks gives great relief to some. I will let batch or someone tell you about it.   As far as busting goes RC or HBWR seeds are going to be your fastest way to give it a try and is legal to purchase. Growing MM takes time a little trial and error and a little luck. If you decide to go that route we can steer you in the right direction. Stay strong it will get better. You can always get a welding oxygen set up as many have done for various reasons. Did the oxygen help you in the ER?

 

Brian

Share this post


Link to post
Share on other sites

The usual excellent information and advice from Freud.  And his follow-up question is very pertinent.  If your headache is constant and meds that should help with CH don't work (though we'd need more information than "crapload" to make this assessment :) ), you might well have hemicrania continua (HC), which has these characteristics and is treatable with the drug indomethacin.  If indomethacin wasn't part of the crapload and the symptoms match, then you want to try indomethacin.

  • Affect only one side of your head
  • Are daily and continuous with no pain-free periods
  • Cause moderate pain with spikes of severe pain
  • Respond to the prescription pain reliever indomethacin (Indocin)
  • Can become severe with development of migraine-like symptoms

In addition, hemicrania continua headaches are associated with at least one of the following:

  • Tearing or redness of the eye on the affected side
  • Nasal congestion or runny nose
  • Drooping eyelid or pupil narrowing
  • Sensation of restlessness

     

Share this post


Link to post
Share on other sites

Hi guys thanks for the quick reply, I get them all day every day(Also just to clarify never have had a headache/migraine in my life up until now). There is a constantly pressure and pain behind and around my right eye and the actual eye gets bloodshot and swollen/hurts to the touch. I went to the ER multiple times for the pain and just looked at the medications they gave me. I was given percs 375mg x 2 every 6 hours for 3 days for the first time. 2nd visit was given multiple Toradol injections followed by maxeran and a steroid. 3rd visit same thing but the torodol did not work very effective but got me really high. Took away 70% of the pain but the headache was still there. 4th visit was given a high dose of maxeran with a steroid, did pretty much the same thing as the torodol but a little less relief. After that they had no other medication to give me, the ER by my area doesn't take the headache very seriously neither does my doctor. They didn't try oxygen on me. I begged my doctor for it but because " she hasn't heard of anyone doing that" she wont prescribe me oxygen. The neurologist I saw recently just gave me verapamil to try but reading the side effects and problems that can come to your heart I am a stiff no go for that one, I have bad side effects to many medications. There has to be a better way. I don't drink or do drugs, i smoke marijuana and cigarettes which I know can be a cause for clusters. As for right now I am in a 7/10 pain constantly throughout the day, with spikes every little while in behind my eye/around it that happen every hour or hour and a half and are really painful. My entire face hurts but I am just battling it out. I would rather live with the pain than have to deal with bad side effects from medication even if I cant do anything. Also if this is helpful, I have intense TMJ problems, my jaw is out of place a good 50% of the time and it is always swollen/ clicking and grinding on the joints. Could this be part of the problem associated to my headaches? I had a wisdom tooth pulled about a year and a half ago and they messed something up in my face on the left side and it has been going numbing and painful since.  Now I have these headaches on the right that started august 13th exactly. Also am seeing double/blurred vision out of right eye, and very dizzy. I just use ice packs on head all day and smoke weed. Also i know MM will take time to grow but I have all the time in the world and know I could grow a good batch and use a low dose in pill form preferably. I could try and get through a friend but don't trust the quality. 

Meds I am on right now:

 Tramadol 375 x 1 when needed. 

 Ibruprofen as needed. Xtra strength  400mg.

over the counter tylenol.

Advil as needed. 

Naproxxen 500mg x1 as needed for Joint pain. 

.75-1.25 ML of CBD oil.

2-3 joints a day with marijuana. Took a 2 month break and had no effect. So Would rather smoke and deal with the pain. 

 

CH_looks like.jpg

Share this post


Link to post
Share on other sites

So first step ought to be to try to get indomethacin.  It will tell you if you have HC.  It's an unpleasant med that had gastrointestinal side effects that are severely uncomfortable for some people and not so bad for others, but it might take away your pain.

Also, start on the D3 regimen: http://www.vitamindwiki.com/tiki-download_wiki_attachment.php?attId=7708

You could share this with your doctor who "hasn't heard of anyone doing [oxygen] ": https://jamanetwork.com/journals/jama/fullarticle/185035

If you have CH, you are indeed getting a "crapload," since it's all crap in terms of treating CH.  No one has ever prescribed a triptan (such as Imitrex)?  Seems weird.

 

54 minutes ago, Collin said:

i smoke marijuana and cigarettes which I know can be a cause for clusters.

Nah. Not really.  Some people get CH attacks from marijuana, but you don't.  Most people with CH smoke, but lots don't and never had.  ~80% (my guess) of people who quit smoking say it has no effect on their CH.

Edited by CHfather

Share this post


Link to post
Share on other sites
31 minutes ago, Collin said:

Ive taken rizatriptan ODT but it didn't have much effect, but than again I've only taken it twice. 

In general, oral medications are too slow-acting to affect CH, so injections or nasal sprays are preferred.  Since your pain is constant, I don't know what to say about what effect might have been expected.  Some easing of the pain in 20-30 minutes, I suppose.  I hope you'll follow up on that hemicrania continua possibility.

Share this post


Link to post
Share on other sites

It will be a few months until I'm even able to see a neurologist, and i might go to the er if the pain gets severe. Do you know if the ER will have this drug to give me if I go or will my GP be able to prescribe it? Also do you know if MM have any effect on continua? Was just looking it up it is similar to what I'm experiencing. This is pure torture all I can think about is the headache. 

Share this post


Link to post
Share on other sites

In general from what I’ve seen posted. There may be an initial benifit to using mm but it doesn’t last. Any hospital will have both oxygen and indomethacin. Indo is an old NSAID and can be harsh on the stomach but does wonders for HC and nothing for CH.  may the force be with you

 

brian

Share this post


Link to post
Share on other sites

I know you said it’s going to be a while before you can see neuro. But I would find the closest headache center Call and make an appointment now it usually takes 4-6months to get in as a new patient.  Where are you located we may be able to find a verified good doc for ya. I travel 4 hrs to see my doc...

Edited by Freud

Share this post


Link to post
Share on other sites

I'm in Toronto Ontario area closer to hamilton, there are so many docs I've seen I can't remember if one is a headache specialist. The thing that worries me is my current neurologist just whips out verapamil as a med for me and doesn't send me for check ups or heart EKGs to follow up so I don't want to take it. 

Share this post


Link to post
Share on other sites

You should have a baseline but a starting dose of verapamil at 80mg twice a day is very safe. I didn’t get anything more than a BP check at my first headache doc until I was on 160mg twice a day. I now take 160mg 4 times a day and am increasing it every 7-10 days w EKG check at a cardiologist. 

Share this post


Link to post
Share on other sites

Hello Collin,

Currently I am struggling with something very similar. 

I had lots of CH attacks (which also triggered migraine attacks) from April and it stopped 7 September. Normally October and November are the most quiet months for me. But not this year. A few weeks after the cluster stopped, I have this constant headache exactly as you describe and exactly on the same places as you show in your picture. But it is not 24/7. I would say its around 3-4 days a week. At night it is much stronger than during the day. Begin November, we had the change to wintertime together with a very big drop in barometric pressure. That headache came then very strong then and resulted in 5 CH attacks in one evening. The next evening I got another 2. Then it stopped but currently again 24 h headache for 2 consecutive days. It feels like a CH attack that started but got stuck halfway and now sits there. Sometimes it comes stronger for an hour and then go back to its base level.  I have to go back to the hospital in February and I also will ask a trial for indomethacin. But I doubt its one of the hemicrania as I have excellent response on triptans and oxygen. Normally both hemircania do not react on this. 

My CH is in permanent evolution and changes all the time. It has a lot to do with the heavy migraine I had for my entire life but seems I start to grow out of it (I am 50 now) and it is disappearing more and more. Seem the CH does not yet know how to behave with all this room in my head for itself :)

 I experienced my first CH in 2012 but it is the first time I have this semi-permanent headache.

I think the best you can do is go to a doctor and ask for an indomethacin test. Your doctor can look up the doses and how to take it (as it is heavy on the stomach many take additional medication to protect the stomach) and then you will soon know if it is hemicrania or not.

You can also search for "shadows" here on the forum. There are lots of threads about this subject and I remember stories from people who struggled with them for months and months in a row so I assume that these symptoms are not uncommon in CH patients. Some patients have clear-cut attacks and others have a migraine-like CH. I read once an article about this and that is because it seems that nearly 50 % of the population carries a migraine genetics but most actually do not have the condition. However, in CH patients, this genetics can make CH showing migraine-like features like nausea, photopobia, slow onset of attacks or long-lasting shadows between the attacks.

I learned one thing... headaches are a complicated business :)

 

 

Share this post


Link to post
Share on other sites

Siegfried I know what your talking about. I don't know what kind of head aches these are one night I was driving a friend home and I got hit with unimaginable pain and it didn't stop for almost 2 months. Even when the pain stops there is this weird lingering pressure that stayed in my head behind my right eye and cheek that is maybe a 0.5/10 on a pain scale. 6 days ago the pain started coming back not as strong as before but my eye socket is swollen as hell and my eye is rly hurting. I tried a tramadol last night which helped for maybe half an hour and I just try to distract myself playing games with friends and what not. Today it has drastically improved but I have a brutal aura today. Whenever I have these headaches I see double when reading and looking at some thing but no photophobia right now, usually only out of the right eye. My previous attacks I couldn't handle sunlight but could still game and hang out. The last thing I usually can do is sleep so I just game and program( I'm in school) but I dought I can sit through lectures like this. I am in a bad spot. I have a rly high pain tolerance I have had many injuries but this is just getting rediculous. I am going to a mindfulness clinic and a pain management center to talk with someone about this. I can't even walk my pooch anymore cuz I'm so dizzy all the time. How do you guys find the strength to get anything done specifically work and meeting with friends everything is a mess right now. I am exhausted all day every day I sleep 10+ hours a days cuz I'm so tired. Does anyone else feel overwhelming fatigue during all this? I just use ice packs all day and troop it out cuz most of the medication is a poop shoot. I want to go back to enjoying the little things in life instead of it being drowned out by constant headaches and tinnitus from TMJ issues. I also saw that stimulator implants are a possibility but could this be a possibility? I am very young and I am disappointed that I started getting headaches so early on. No one in my family rly understand they just expect work and school to be a breeze and that I can just sleep this off. Do you guys know of any studies being done I would gladly participate. I am just hoping there is a golden ticket to freedom in pill form or if I take enough CBD it will stop.

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now

×