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konaguy

3 nights pf with first major cluster?

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Here is my story:

I had a fairly painful headache on the day of Aug 18th (I rarely if ever get headaches).  I then had about 3 more headaches over the next couple weeks during the day.  Then a couple nights ago, I was woken two hours into my sleep with the most painful headache I've ever had--the epicenter around and behind my right eye.  I was sitting on the floor, floored by this intense pain and confusion that went with it.  I took two advils and the intense pain dissipated after around 20 minutes.  I went to the ER and got a CT scan to rule out any bleeding.  I came back home, went to sleep and was again woken with a very sharp, throbbing pain around my right eye though not quite as debilitating.  

 

since then I've had tons of water, d and magnesium and melatonin, and a small rc dose, and twice daily cannabis oil. 

I've had 3 nights pain free with a slight  headache in the morning since. I have had some dizziness. 

A specialist told me it sounds like CH. Does the 3 nights pf post major attack mean it isn't? Or is this  normal for ch?

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Hi Konaguy!

There is no concrete answer to your question. They can start out sort of erratic and the cycle be short lived. Did the doctor put you on any medication for CH? If so, the medication may have kicked in for you. Did you actually have an appt with the specialist or just talk in passing? A correct diagnosis is really needed and helpful.Do you have any other symptoms with the headache? Runny eye or anything?

You might want to read up on the D3 regimen in the Clusterbuster Files section of the board. It will give you the whole regimen that can reduce your pain. Some go pain free on it. It appears that you have done some reading since you are taking some of the vitamins, taking melatonin,  and drinking a lot of water.

If you could, give us some more information. Three nights PF may be the end or it may be a break. It is impossible to tell. CH tends to come at the same time of day each day for Cher's. Some get hit multiple times a day and some get PF days in cycle. The variables are many. Dizziness is not something that I have experienced from CH. Too much melatonin will leave me dizzy in the mornings.

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Thanks for the reply. I had just emailed my story to the clister buster revommended doctor in my city. Sadly he is also said he is booked for months.  I did not have any runny nose or droopy eye. I did have some naseau, Maybe related to thinking it could be a tumor. 

 

I wonder if my strong dizziness today and minor dizziness yesterday mean it is vestibular migraines--something my sister has and is now using SSRI for it. I read online though that CH wake you up, like mine did..while migraines are improved by sleep. Confused. 

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I understand your confusion. You are going to need to see that neuro to get a firm diagnosis. I am not a doctor, so I cannot tell you which it is. But yes, CH will wake you from sound sleep. Have to you seen your PCP? Perhaps he/she is familiar enough with headaches to help you. Some are. At least he could check into the dizziness. I would be concerned about that aspect.

Since your sister has migraines, I too would wonder about it. Have you discussed this with her? Perhaps she has some insight that would help you.

Mostly, I think that you need to see your doctor first. Get checked out for the vertigo. Then move forward.

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Thanks again. So I was just woken up two hours into sleep. First I open eyes and saw blue dots for a second. Then panic if this was an attack or not. Then felt a tiny glimpse of behind eye pain, Somme pressure in head. Then noticed vertigo still there; have feelings of dread, speediness and panic like in a bad trip. Not a bad headache at all. Feeling wide awake though.

Not sure what to make of this. My own panic over my condition (and North Korea news) waking me up two hours into sleep? Is this possible to be woken like this with CH but have barely no headache? Maybe the melatonin and d just reduced it and something CH-related triggered me waking up? 

 

Ive taken 20 mg of propranolol just now and am attempting some level of mindfulness. 

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Aside from one or two instances of extreme pain (which might or might not have been at CH-level severity), you have virtually no symptoms that would lead to a CH diagnosis.  No runny, red, or puffy eye or drooping eyelid, no nasal congestion.  Vertigo/dizziness are not symptoms related to a CH diagnosis, although a very small number of people with CH have them.  (They are different things: vertigo is feeling like you or the room are spinning; dizziness is feeling woozy, lightheaded, etc.)  Your attacks are not always at the same time of day.  Advil doesn't alleviate CH pain; it has no effect on it at all.  As we have discussed, virtually everyone with CH is too agitated during an attack to lay still or sit on the floor.  It is highly unlikely that melatonin + vitamin D would account for the experience you just had. (Migraines, and other types of headaches, do sometimes wake people up at night.  Some people with CH are not awakened during the night by attacks.)

You seem to have something going on, but I can't see a sensible doctor diagnosing it as CH.  I say all this because I worry that treating it as though it's CH as you are doing, with seeds, D, melatonin, energy drinks, etc., might somehow be making it worse if it's not CH.  I know you're trying to get to see a doctor, but that really is your most crucial step right now.

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Konaguy,

You really need to see a doctor about this!!! If nothing else is available, go to the ER. They can refer you to a doctor and get the ball rolling on that doctors end. By yourself,it may take a month to get in. Please. See a doctor!! This spots and vertigo are a real concern.

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