Hi all, I need some opinions. Hopefully this is the right location.

[Aziren]

So last month, July 6th at 1:50am, I woke up instantly with severe pain in my eye/eye socket, left side all of my face. (almost all symptoms going forward will be on the left side). After a couple minutes of groaning in pain, it became full on sobbing in hysterics. I've had shingles. I have migraines every 2 years on/off. And I'd rather deal with either of them again than this pain. 

it lasted for maybe 30mins to an hour, but we did head to the ER at around 2:30am or so. While the Dr there suggested giving my oxygen, the IV with Benadryl helped quelled the pain that was left, as the episode started dying down by the time we got there. That night, it was eye, eye socket, back of my head for pain.

I avoided an episode the next night, possibly because of the meds from the ER. But for about three weeks following, I had attacks at different times.

My boyfriend looked into things that could help, so we got Benadryl in pill form. I took two before sleep and took two every time I woke up during the night. The times I wake up are varied, I have no alarm, I've just always been unable to sleep a full 8hrs uninterrupted. Now this became more effective in stopping a more 'immediate' attack, as for most of those 3 weeks, I ended up dealing with 1-2 attacks a night anyway. But some times it wasn't enough, in that I took some pills but while trying to get back to sleep, dealt with an attack shortly after. At least two attacks have led to me puking for a while during the episode.

So far, Benadryl before sleep or compressing the fuck out of my left temple during an attack were the only things that helped, but they 'evolved' and got worse. Eventually the pain got into teeth, my cheek bone, inside my throat and on my neck.

Every time an attack happens, it starts with a small pain in my temple and while that pain persists, it goes into my eye/eye socket or vice versa and becomes full blown following that. I actually got a teething ring for something to bite to help put pressure on my teeth as well to try and subside it a little.

 

Now that I've had no attacks since 26th, I'm not 'fine'. My temple will still randomly hurt, or my eye will. I'm also experiencing random swings of nausea and this is happening every day in varying intensity and combination. I've already lost a handful of pounds because I mostly don't want to eat due to the feeling. This has also fucked my sense of temperature. My house is always 79F, not the coldest but not not at all, and there are times where I NEED an icepack or I feel like I'm on fire. I used to be able to sleep with a fan on my face and a foot out from under the sheet and feel a-okay, but it's a toss up if that changes.

I finally saw a neurologist today but he was underwhelming, rude, dismissive and uncaring of the current/lingering problems.
I don't experience during the attacks:  Eye drooping, eye tearing, sweating on one side or facial discoloration. And for those reasons he thinks it could be chronic migraines instead.

I spoke about high-flo oxygen therapy and he was dismissive of it to the point of trying to talk me out of it, due to price (He never said what the price of oxygen was, just that it seemed like it'd be too much out of pocket) and how dangerous it is, due to the contents. He also said to try 'supplements' but he literally never said what. My boyfriend found and put me on B12, Fish Oil and Calcium Citrate with magnesium, zinc and D3. I take two B12 a day, but I can't always manage two of the latter, because if I don't eat and take them, they also make feel violently ill for a little while.

I won't profess that I know everything about either cluster headaches or migraines, I don't. But I have migraines as I said, and they've only been on my right side and without eye pain. I don't have documentation because I only recently got insurance in comparison to having dealt with my migraines and when I finally get migraine meds to try from my PCP, that was the last day I had them happen for now. (They come about late August to early September)

But since all of this happened, it's been really hard to do most things. Due to the attacks I have gone through, there was one night where my anxiety was so high in fear of the pain that for a while, on random spots on my body, I both experienced phantom crawling sensations and parts of my limbs just twitching. Or perhaps jerking, because they were noticeable and a problem for that night. I haven't experience either of those again however.

I'm sorry if this is a mess. I've been stressed and tired for long time now due to this. If you have questions, I will answer them in case I missed anything. My timeline isn't the greatest because I didn't write it down following what happened every night, I barely got any sleep for so long.

[snafu]

not a doctor. so take this with a grain of salt.

what you describe might very well be ch. you need to consult another neurologist for a diagnosis, one that  is educated on the topic of headaches/ch. over the counter painmeds won't help at all. ibuprofen etc are useless.

until you get the diagnosis which opens up options of O2 and preventatives you can and should look into the vitamin d3 regimen for ch and do the loading doses and the full monty, you already used benadryl and it seemed to do something right?

also get some icepacks so when you get hit you can use those. 

if you are able to: during an attack try to do some high intensity cardio like jumping jacks, burpees or pushups. many people report being able to abort hits

get some redbulls, use them when you feel a hit coming, people report aborting with this aswell

get some melatonin before bed. 6-10 mg, and see if you get better sleep, or even sleep through the night without a hit.

read up in the busting protocol on this site. with proper tools you don't have to suffer like you do now and you won't have that anxiety and fear of attacks looming.

i emphasize on getting diagnosed asap.

 

good luck

[Aziren]

4 minutes ago, snafu said:

not a doctor. so take this with a grain of salt.

what you describe might very well be ch. you need to consult another neurologist for a diagnosis, one that  is educated on the topic of headaches/ch. over the counter painmeds won't help at all. ibuprofen etc are useless.

until you get the diagnosis which opens up options of O2 and preventatives you can and should look into the vitamin d3 regimen for ch and do the loading doses and the full monty, you already used benadryl and it seemed to do something right?

also get some icepacks so when you get hit you can use those. 

if you are able to: during an attack try to do some high intensity cardio like jumping jacks, burpees or pushups. many people report being able to abort hits

get some redbulls, use them when you feel a hit coming, people report aborting with this aswell

get some melatonin before bed. 6-10 mg, and see if you get better sleep, or even sleep through the night without a hit.

read up in the busting protocol on this site. with proper tools you don't have to suffer like you do now and you won't have that anxiety and fear of attacks looming.

i emphasize on getting diagnosed asap.

 

good luck

Thank you. We will be looking into another Neuro. This one just happened to be the earliest, everyone else was between early September to mid October for availability (yay me)

I'll keep in mind the exercise and I'll get an energy drink to go with it, just in case. The regimen article you linked is what I'm on, though I'm on the lower end of doing it due to the aforementioned nausea. For now, we're not sure when it will start against with actual attacks or if at this point, something else could trigger it.

The Benadryl did help to subdue it from starting 'early', between 10pm-12am, but they usually ended up happening later, between 3am-9am since it couldn't always catch it.

I've tried icepacks for the pain during the attacks but they did nothing or made it feel worse. Same with a hotpad.

We did try melatonin (on it's own, google says not to mix it and benadryl) and melatonin did not at all help that night.  

A little more info is that in general, OTC meds don't tend to help me any and they never really have. Thank you very much though, we'll keep looking into this.

[snafu]

3 minutes ago, Aziren said:

he regimen article you linked is what I'm on, though I'm on the lower end of doing it due to the aforementioned nausea. For now, we're not sure when it will start against with actual attacks or if at this point, something else could trigger it.

you need to do the loading doses with the d3 and k2, it's one of the most important components. calcium has been taken off the list btw. for the nausea: never on an empty stomach. take a vitamin b multi and not b12. you need to be taking the whole list of supps for best results. and you need to keep taking it for more than just a couple of days. use the searchfuntion here for more info on it. it has been one of the biggest impacts on abortion/prevetion together with psychedelics.