New with the problem of Cluster Headache

[SHUBHAM SINHA]

Hello Everyone!! 

This is Shubham Sinha, I am from India.

I am experiencing pain in the left eye orbit. I have been experiencing this headache from the past 8 days. Before that, I had a sinus infection for about a fortnight, and just the day before I experienced pain in the eye socket, I did some abdominal exercise which included neck tension.

I have a lot of questions about Cluster Headaches, how are they caused? how did I suddenly get them? are they genetic? and more.

please help me I have watched a lot of videos of people suffering from the same and it is scary to see them suffering and going through the hell being alive! 

I had experienced it for 8 days and did three experiments :

1.) I had an adequate amount of sleep of 7-8 hours at night since I get them in the morning around 8 A.M to 12 A.M which is 4 hours of irritating and painful headache that I cannot even focus on a single thing. And the result was a less painful headache.

2.) I had less amount of sleep of about 4 hours which was my worst mistake ever. It resulted in the most painful headache I ever had.

3.) I ate bananas because in research it was said that having magnesium helps in curing the pain. Well, what I found was nothing it just gave a boost to my mood, I felt better for some time and then the pain continued.

All I want to ask from the experienced members of the forum to help me cope with this problem, and tell me how can I being a newbie prevent myself from the longterm pain and eradicate it before it gets its feet established in my brain...  

Thank you.

[CHfather]

Hello, Shubham Sinha.  It's not completely clear to me from what you have said that you have CH, but I think this file will help you see the many things that can be done to treat CH: https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/     In general, you might look through the ClusterBuster Files section, where there is quite a lot of information.

1 hour ago, SHUBHAM SINHA said:

I have a lot of questions about Cluster Headaches, how are they caused? how did I suddenly get them? are they genetic? and more.

I think it's fair to say that no one knows the answers to these questions with any certainty. Many theories and considerable research, but no certain answers except that to some extent there sometimes seems to be a genetic element, although most people with CH do not have parents who had it and do not pass it on to their children.

Another fellow from India treated his CH with some success using the method called "busting."  If you put the word Vipul into the search bar at the top right of the page (with the image of the magnifying glass), you can see his posts.  In general, that search bar can be helpful if you are looking for a specific topic.

 

[SHUBHAM SINHA]

Hello 'CHFather', I am sorry that I could not make you clear about how did I diagnose myself with CH.

Actually, we are in a lockdown period amid coronavirus outbreak. so, I felt not to go out for a diagnosis at the time when the doctors are busy treating the infected. hence on the basis of my symptoms I googled and came up with the result that it is nothing but Cluster Headache, which occurs at the same time every day and it pains around the temples and eye socket.

I watched some videos on youtube of people having CH. In a video posted by the Association of Migraine Disorders which included a patient named Mark Masuleh, a Psychotherapist by profession who is also the member of this community mentioned about this forum, which made me join this community.

I have been experiencing it from the past 8 days. Today is the 9th day and the day of my 4th experiment, As I read about it happening due to the disbalance in Hypothalamus and the body's biological clock. So, I tried to follow the pattern that our ancestors used to follow, ( Sleeping early, waking up at 4-5 o'clock, exercising to keep them healthy and fit and bathing early etc)

Guess what, the result was amazing. it is there but I can only feel its presence, it isn't paining that much as it did in the past 8 days. 

Sure 'CHFather', I will read all the content you told that is on the website. and will surely look at the profile of Vipul, from India whom you mentioned.

Thank You

[Siegfried]

Hi Shubham,

A good starting point for self-diagnosis is the ICHD-3 classification. That is what every doctor is using as they are a kind of international guidelines. It somehow sums up the symptoms you should have, and that in comparison to many other symptoms you can have. That is a big difference. For cluster headaches, it reads as follow:

Description:

Attacks of severe, strictly unilateral pain which is orbital, supraorbital, temporal or in any combination of these sites, lasting 15-180 minutes and occurring from once every other day to eight times a day. The pain is associated with ipsilateral conjunctival injection, lacrimation, nasal congestion, rhinorrhoea, forehead and facial sweating, miosis, ptosis and/or eyelid oedema, and/or with restlessness or agitation.

Diagnostic criteria:

1. At least five attacks fulfilling criteria B-D
2. Severe or very severe unilateral orbital, supraorbital and/or temporal pain lasting 15-180 minutes (when untreated)¹
3. Either or both of the following:
   1. at least one of the following symptoms or signs, ipsilateral to the headache:
   1. • – conjunctival injection and/or lacrimation
      • – nasal congestion and/or rhinorrhoea
      • – eyelid oedema
      • – forehead and facial sweating
      • – miosis and/or ptosis
   2. a sense of restlessness or agitation
4. Occurring with a frequency between one every other day and 8 per day²
5. Not better accounted for by another ICHD-3 diagnosis.

Notes:

1. During part, but less than half, of the active time-course of 3.1 Cluster headache, attacks may be less severe and/or of shorter or longer duration.
2. During part, but less than half, of the active time-course of 3.1 Cluster headache, attacks may be less frequent.

Very popular and also very helpful for many here the vitamin D regimen for cluster headaches. It is a balanced regimen of vitamins and minerals centered around Vit D3. You can look it up and can give it a try. There is a PDF available that describe everything in the details.

Hope that helps and if you have any further questions pls ask. We are here to help you the best we can 

 

siegfried

 

Edited April 16, 2020 by Siegfried

[FunTimes]

You will also want to read up on different ways of getting and using oxygen to help abort the attacks when they come. It may be hard to get the optimal oxygen setup now with everything that is going on but something to look into. I also have found that drinking a 5hr energy drink or any strong caffeinated drink fast at the onset of the attack can help keep it from reaching full strength.  Good luck, read as much as you can and ask questions. 

[SHUBHAM SINHA]

Hello everyone!

I wish everybody is home and safe.

Today is the 11th day and I didn't feel a thing now, What I mean to say is since I changed my lifestyle, of sleeping eating and exercising at the required time, everything is okay. yesterday and today I didn't feel a thing, it is like the pain was never there on the supraorbital.

since I read about the decreasing level of melatonin which is due to the lack of sleep at night or being awake during the night. I started changing my schedule, which ends up in a pretty good result.

I thank you Seigfield and Funtimes for your suggestions and details about CH. 

especially your description Seigfield was very helpful, I was totally unaware of such terminologies which really helped in the assessment of what I am really going through.

But the pattern you mentioned was the same I went through, the only exception was I had it once in the whole day which lasted for 180-240 minutes, starting with the slow pace reaching to its zenith and ending with the slow pace. I did not observe nasal congestion, eyelid oedema and ptosis in the early days or the days in which I had the attack or should I say pain.

but from past two days, I have observed that I haven't felt it. which is obviously good. (*will not celebrate early till I consult with a doctor* LOL)

Conclusion: Till date I am fine, no pain, changed lifestyle is affecting, giving result.

I have decided not to name it CH until I see a Doctor.

what do you suggest?

Again, in the end, I want to Thank you all for helping me. This means a lot.

 

[Siegfried]

Hello Shubham,

There are some guidelines I learnt from the doctors I have been with:

If your headache is strictly unilateral (never appear on both sides on the same time) and also side locked (always appear on the same side) and your pain goes together with a feeling of agitation or restlessness, that is the red flag for a category of headaches called Trigeminal Autonomic Cephalgia or TAC. CH is a member of that family but also both hemicrania headaches and I think SUNCT and SUNA as well. So if you fulfill the above there is a possibility that you are categorized as "probable TAC" along ICHD-3. 

But again... you MUST see a neurologist as soon as possible. They will make a scan of your head to ensure there is no underlying cause and thus confirm your headache is primary.

Don't rely on self-diagnoses for this kind of things - its too dangerous. 

siegfried

 

[SHUBHAM SINHA]

Sure! Siegfried,

I will surely consult a Doctor and would not rely on self-diagnosis. 

will get back to you once I get the consultation. 

Thank You, Siegfried,

Shubham