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Cluster Headache Help and Support >> Cluster Headache Specific >> Opinions wanted

Message started by Robdog on Nov 29th, 2018 at 3:19pm

Title: Opinions wanted
Post by Robdog on Nov 29th, 2018 at 3:19pm
I writing hoping to get your guy's opinions on the head aches I have been having. I don't want to jump to any conclusions on what I might have but I am starting to believe its cluster headaches given my experiences and what medical professionals have suggested. I have not experienced these for very long, but I am kinda worried and am trying to figure out what is going on with me. 

This everything I have experienced and its a little lengthy sorry. I summarized everything at the end if you don't feel like reading it all.

About a couple weeks ago I suffered a headache on a plane ride that was probably about a 2-3 KIP (I am not great at putting a number on my pain levels), it was on a Friday night. The pain was located behind my left eye. I didn't think anything of it just thought I was dehydrated. That night and the next two night I woke up around 2am (went to bed around 12) with an intense head ache probably around a 6-7ish KIP (squirming in bed/fetal position type of pain). For some extra info, that weekend I was preparing a presentation for an interview and lost a bunch of my work and had to redo a lot of my work so I was pretty stressed. I took some Advil during those nights which did nothing. I squirmed in bed for an unknown amount of time and was able to eventually fall asleep. On Monday I had the job interview and that night and the next I didn't experience any pain.

Wednesday I went to the doctors to see if I had a sinus infection I did not.  That night I went out to dinner and stuff myself and drank some. Once I left the restaurant I came down with another head ache (always the same side). I eventually had to make my girlfriend drive because of the pain. I eventually got a little nauseous, and threw up a tiny bit. I am not sure if it was from the head ache or if I just ate too much and got motion sickness.  We ended up going to the ER right after I got sick. I was given O2 and my head started to feel better once they were putting my IV in. I was given some meds and got at CT scan and they didn't find anything in my brain or sinuses.  They thought it might be a migraine or cluster headaches.

I have woken up every night since then with theses head aches. I got a couple during the day with varying pain. One lasted like 20 mins and then went away. One of them happened when I was playing a board game and I kinda just pushed through it and it lasted maybe 5 mins. This Monday night I woke up with another head ache in the middle of the night and after a hot shower for about 20 or 30 mins I was able to climb back into bed and fall asleep. Then this Tuesday I woke up with a head ache still about a 7 or 8 KIP, and it lasted for about an hour where it then died down to like a 3 the had spikes up to around 5-6KIP. I could feel the pain from my top left molars to the temple.  I was able to make a dentist appointment where I was told nothing was wrong with my teeth (I was hoping there was). It was about noon and I hadn't ate anything I did take a couple Tylenol (no help) and tried to put down some soup. I threw it us as soon as I finished and went back into my bed I woke up at like 6 feeling super tired still had a lingering pain maybe like a 2KIP and ordered a sub where I was able to keep it down. I went back to bed and laid there until like 9 where the pain grew and died down it times where the pain was bad my hands tingled a little bit but idk if that was from pain or lack of food. The pain never fully went away that day. I fell asleep around 9 after taking 10mg of Melatonin and woke up at like 11 with a screaming headache 7-8KIP. I hoped in the shower and sat there for 20-30 mins and then went to bed. I woke up Wednesday feeling good. No pain and was good all day my head did feel tired like worn out like a lingering feeling. I was a bit worried to go to sleep in fear of waking up in pain, and eventually fell asleep around 2ish. I didn't wake up with any pain. That bring us today, I still feel a lingering feeling in the place where the pain was but its not painful.

Summery: Painful head aches behind my left eye. Pain can be felt from my upper left molars to my temple. I have experienced tearing from the one eye. When in pain my left nostril seems congested (but not my mucus).  I usually get the around a couple hours after falling asleep. Super painful, pretty consistent on when I get the headaches.  I had one super bad day a couple days ago where the pain seemed to last from when I woke up in the middle of the night till the morning because I woke up with it still. It didn't really go away that whole day. I woke up that night a couple hours after I fell asleep. The following day I woke up without any pain, and haven't had one since. the episodes lasted a little more than a week and a half (hopefully). Its been a day and a half since my last head ache.

I look forward to hearing what you guys think. Theses head aches are like nothing I have ever experienced before. I hope you all are doing well. Thanks for taking the time to read all of this. 

Also I do have a couple appointment with neurologists, but they aren't until a couple of weeks. I will report back to you all once I talk to them.

Title: Re: Opinions wanted
Post by maz on Nov 29th, 2018 at 5:07pm
It does sound like CH, BUT, our opinions are not a diagnosis, and a diagnosis is vital.  There are many different conditions that fall under the umbrella name of  "headaches".  They all create a similar kind of pain, but are caused by different things.  Therefore, they need different meds so it's vital to know what kind of headache you have.
Your neurologist should be able to figure it out.

On the left of your screen there is a tab  "cluster quiz".  Give it a go.

If it is CH, there is plenty of help, and you will find the best help right here.

The mild lingering feeling you have is what we call shadows.

While you are waiting for your appointment, try this :
At the very first sign of pain ( don't wait to see if it ramps up ) drink a red bull, really fast.  It's the combination of caffeine and taurine in a sudden hit that does the trick, so any energy drink with those ingedients will do - red bull, monster etc.  It doesn't work for every one, but does help a lot of us, so well worth a try.

Keep us informed, and good luck with your appointment.

Title: Re: Opinions wanted
Post by AussieBrian on Nov 29th, 2018 at 6:38pm
Yep, many get good results from energy drinks. Something else you might consider is starting a headache diary listing the time of each hit, duration, kip level, what you were doing at the time, what you'd been eating, all that sort of thing.

This will give your neuro a big start on working out just what's going on and may even offer hints on what to avoid or perhaps things that give a bit of relief.

All headaches are horrible and we're on your side,

Brian in Oz.

Title: Re: Opinions wanted
Post by Mike NZ on Nov 30th, 2018 at 1:05am
Echoing what Maz and Brian said... Diagnosing CH is hard as whilst ticking off the symptoms is straightforward, to complete the diagnosis you need to rule out all other possible causes for the symptoms. There are multiple other things which can result in the symptoms, which is why we always recommend a headache specialist.

We've all been where you are now, having horrible headaches and not knowing what they are. As Brian said, start a headache diary and learn what you can, try to spot patterns and anything else which may help the neuro / headache specialist.

Ask away and we'll help where we can.

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