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Dlions

New poster - please help

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This is my first time posting, would love any help the community can provide. 

I started getting severe headaches in august. A Month straight of agony with no relief. Very severe headaches multiple times a day and also my head just hurting all day as well. Droopy eye, Runny nose, only On my left side, usually First thing in the morning and lasting all day. I had an MRI and it Came back ok, and then a week later it went away so I didn’t think anything about it.

Well 3 weeks later it returned and now it seems worse. I’ve tried to do a lot of research and reading posts, and the major inconsistency Im finding that I’d love to hear others experiences, is that I also have headaches all day long. I basically get smal attacks all day long, with some relief every once in a while. Then 2-3 times a day I get the real major attacks lasting about an hour and uncontrollable. Can’t sit still, immense pain and just nothing I can do to stop it. Ive noticed hot showers on my scalp help a bit to relieve pain in the moment, but comes back the minute I get out. Today I was prescribed Fioricet( I tried it tonight and Ive been up all night with even More pain) and I’m also going back to get an mra and ultrasound/ eeg. 

Does this sound like cluster headaches based off the fact I’m also having headaches all day long? From my research it seems like these are only supposed to be a few times a day and then nothing else the rest of the day. I’m honestly thinking it could be something else now but I’m just honestly lost and desperate at this point. 

Appreciate any help you can provide. 

Thank you

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It sounds like classic cluster headaches from what you’re describing and I’m sure the more experienced members will answer you soon. I was prescribed Fioricet as well for “migraines” like 5 years ago. It probably won’t help you that much for this condition. I recommend you start the d3 regimen right away. Many sufferers find relief within a week to one month. It’s something you take all year round. @Batch developed it and he’s very knowledgeable on this. Put d3 into the search bar in the home page and you will find everything you need. I have found everyone on the forum to be more helpful than any doctor I’ve seen (5 neuros over the last 5 years and 1 primary care doc) pretty scary. Hope you find relief soon! You will :) 

kat 

 

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Getting the head scans and tested is a good start to rule out anything else. Next doctors visit you have try to get a prescription for oxygen. You will need to use a non rebreather mask and a flow rate of up around 25lpm.  You can search oxygen on this site and find a tun of information on it. I will also down a 5hr energy drink on my way to the oxygen to help abort the attack faster, some will use coffee or other energy drinks. The Vitamin D3 is another good thing that will not hurt starting today and will help with more then just cluster headaches. Read up on this site and ask a lot of questions and people on here will be more helpful then any doctors you will meet. 

Welcome to the site. 

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Hi Dlions and welcome. 

Just  tiny bit to add. Often we have what we call 'shadows'. They can last all day. A low grade head pain compared to a real hit. I think this may be what you are describing. It makes your head sore and ache too. Things like bending over to pick something up tends to make them worse for me. They are quite common. 

So, if you look at it that way, you are getting hit 2-3 times per day. That would be very consistent with CH. The rest of the time you are suffering shadows - which hurt. A lot of us take some caffeine for that part as well as a true hit. You can do energy drinks or coffee. Tea is not strong enough. Taurine in the Energy Drinks is thought to aid the caffeine in ditching the pain. But some, who can't take Energy Drinks, use coffee to great benefit.

I too strongly recommend the D3 Regimen. All good for you vitamins that fight inflammation. It has been a major game changer for me and many others too. If I go off of it for more than two days, I will begin to get hit. So, yes, I am convinced it works. For me and many others too. And no doctor needed to do it. You do need to get up to date blood work. But, you can begin while waiting for that appointment. :) 

ATB

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From my casual reading about Indomethacin and HC, it seems like there's not a reliable dosing protocol.  I think that's in part because it's advisable to start out relatively low because of the gastrointestinal side effects, but higher doses might be needed to treat it. I know we've all read/heard that one should know in a few days or less whether Indo is working, but I have read elsewhere that it can take a couple of weeks.  By that time, if something seems to be working, it might not be apparent whether it's the Indo or some CH-related treatment (D3, verap, busting...).  Normally, of course, we don't care as long as something is helping, but Indo is hard to sustain for many people, so you wouldn't want to be taking it if it's not the thing that is helping.

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Thank you so much for all of your responses. The hardest part about all of this is explaining it others and no one seemingly understanding. This helps me have a better understanding of what might be going on. 

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This is the place for you.  I'm sure you have heard the response when you tell people about the pain.. "Yea,  I get that too sometimes".  Find a good headache DR.  And please read about the D3 regimen.  It helps a lot of us.  Make sure your Dr is on board so they do all the follow ups.  Hang in there and keep us posted.

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On 10/18/2019 at 10:36 AM, spiny said:

Hi Dlions and welcome. 

Just  tiny bit to add. Often we have what we call 'shadows'. They can last all day. A low grade head pain compared to a real hit. I think this may be what you are describing. It makes your head sore and ache too. Things like bending over to pick something up tends to make them worse for me. They are quite common. 

So, if you look at it that way, you are getting hit 2-3 times per day. That would be very consistent with CH. The rest of the time you are suffering shadows - which hurt. A lot of us take some caffeine for that part as well as a true hit. You can do energy drinks or coffee. Tea is not strong enough. Taurine in the Energy Drinks is thought to aid the caffeine in ditching the pain. But some, who can't take Energy Drinks, use coffee to great benefit.

I too strongly recommend the D3 Regimen. All good for you vitamins that fight inflammation. It has been a major game changer for me and many others too. If I go off of it for more than two days, I will begin to get hit. So, yes, I am convinced it works. For me and many others too. And no doctor needed to do it. You do need to get up to date blood work. But, you can begin while waiting for that appointment. :) 

ATB

the CH picture that is me also is episodic with chronic shadows. I'm goihng to see what my D3 level...just had a blood draw. Chemo, which i am on, orally every day, depletes vitamin D. That said, when I chatted with @Batch he theorized that i was caught in a histamine cascade. After 4 days of Benadryl 25mg 4 x day i am virtually PF, couple of K1 shadows now and then.

Thrilled to be off the verapamil. May work for some, but it blocked both busting and "night fun." stopped the verapamil; happier now.

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Hi Dlions,

Based on your symptoms, typical cluster headache I would say... Background headaches between the attacks are very common and can be very severe. Some have them and others don't. 

Some posters mention hemicrania continua. I would say if you have a good response on triptans or oxygen, then HC can easily be ruled out because hemicrania does not go away with triptans. If not, then I would consider an indomethacin test. Optimal doses varies from person to person. If you take that for a few days and your headache completely goes away, then the chance is very big you suffer from HC. I know someone with hemicrania continua and all by all, the symptoms, type of pain, frequency, location etc... its a very different beast and not really comparable to CH. 

All the best !

siegfried

 

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