dehabel

Thank you! This is the craziest spell ever.

Hi fellow sufferers, I have a question. I’ve had five years of pain-free and all of a sudden I’m getting another cycle, but it’s super weird. Usually, I can tell during the day that it’s coming I get little twinges of pain that are different than normal and then the cycle will start. This one just started full on waking me up in the middle of the night with with a headache. So I started that vitamin D regiment and in the past two weeks I’ve had three that just wake me up in the middle of the night and that’s all that happens. I don’t get them multiple times during the day. I don’t get them multiple times in the night, it’s just one headache for about 30 minutes three times in two weeks has this ever happened to anyone, do I have cause for concern like this different than a cluster headache? I do need to say that my head does feel weird during the day. It feels like weak. I don’t know how else to explain it. It feels weak, and that is normal during a cluster spell. Thank you, Chrissy

Kat, I am so sorry. This pain is so much. I am assuming you did the steroids? What about Emgality? Y soell is over and I do not know whether it was the D3, the steroids, or end of cycle. Hopefully, he can give you something on Weds. fingers crossed for you. Chrissy

One capsule 240 mg extended release at bedtime. Neuro put me to 120 mg for one week then I can quit. No, I have not taken blood pressure, I do not get dizzy just the concrete in my head feeling.

I did not. I will call new neurologist this morning. Thanks.

Thank you! I am about to stop my verapamil I hate it!

OMG, so I remember hating verapamil, but I can't really remember everything I hated. Is it normal for my head to feel almost disconnected from the rest of me...not really sure if that is the way to explain it. It is almost like numb or something. Like I am not all there. I am going to stop it, I feel like my spell is done anyway and I just can't take the side effects. Tonight is my last 10 mg of prednisone and there has been no inkling of cluster in almost two weeks. When I was younger I remember I would start and stop verapamil at will, is there a reason I can't stop taking it? I am on 240 mg extended release and I take it at bedtime. Not happily, I might add.

Kat I am so sorry you are having a hard time. Can you tell me about the whole multi vitamin and verapamil thing? I take them all together. Thanks, Chrissy

I think it was just for protection from getting sick.

Batch told me to take Vitamin C with the D3 regimen.

My heart breaks for you enduring this pain. Luckily, you have stumbled upon such a wonderful group of helpful and kind people. My spellls come in like a lion and out like a lion. At both ends I get a couple of days of the clusters hitting me sporadically and short spurts with these weird like electric voltage jabs every so often in my head. It is almost like it is planting itself from outer space or something. Then they are majorly debilitating for about ten weeks, waking me anywhere from 1-6 times in night, I call it a migraine hangover during day, though that is bad terminology. Usually the last one extends into the morning/day and then it takes off for who knows how long. Eight years last time, two years the past two cycles and prior to that I got them once to twice a year. When I am in the spell and they hit me, I can also predict time and intensity. When they leave, they leave. No pain until morning when I feel hungover and pressure behind my eye that never quite develops. The injections work for me, but you can only take so many. I have an oxygen prescription but can’t find anyone to fill it. Thankfully, I am on Day 10 pain free, thiugh I am not sure why yet. I am on steroids, verapamil, D3, and having phlebotomy where a pint of blood is taken twice a week for a different issue. I feel like they are gone, there is not an inkling of a cluster. When I have taken preventatives in the past during a spell I remember still getting them. We will see, I guess I could try a margarita but it is not worth it until I quit the meds. I am at 40 mg of prednisone and 240 mg of verapamil. However, they stopped with my first wrong mg pack of steroids, I think I was on less than 20 mg a day when they stopped. Hope this was helpful and I pray You and everyone else gets relief soon!

Thanks! Hoping with my blood dosorder diagnosis they are gone forever. Apparently polycythemia vera can aggravate CH and the phlebotomy can relieve it according to my oncologist and neurologist. So at this point I am a bit thankful for my head l, it probably saved my life.

Let me ask you this. When you have taken the prednisone in the past did it make you feel completely normal, like the cycle had ended? I don't remember it doing that before when I took it like 10 years ago. This time, it is like it never happened. Totally normal.

Thank you! By the way, I have had Four!!!!! Pain free nights!

Thanks, then I won’t bother with it. You all have helped me so much! 240 mg of verapamil which is what I was previously on.

He said to use it with the oxygen if needed instead of Imitrex.

Today I went to a new neurologist and as I already knew the guy I hated did everything wrong. Thenew guy gave me twelve days of steroids, the correct mg of verapamil, oxygen, and Indocin...anyone used the Indocin? My oxygen should be delivered tomorrow. I had two completely pain free nights and then last night a glimmer of the pain came back. Head feels wonky today. My husband is picking up my prescriptions on his way home from work, so I am counting on the steroids to do the trick.

80 2x/day

I started the Verapamil two or three days ago and take Benadryl. My spell should be done naturally in a couple of weeks - like four...so, I am hoping this kicks it to the curb. Shockingly, when I got my bloodwork back the other day they found some blood disorder where I produce too many red blood cells. Something called polycythemia vera and yesterday I started what they call phlebotomy. Where they take a pint of blood out of me every week to get my hemoglobin and such where it needs to be - seems sort of medievel to me, but I wonder if this helped. Perhaps that is what made them come back after eight years. I also got melatonin, I did not like it though. I still got a bad headache and it made me feel weird. We will see what I do tonight. Everyone keeps telling me to get oxygen. Monday when I had an appointment with the jerky doctor I do not like, he told me I might have lymphoma because of my blood issue, so I got a little flustered and forgot to ask him. My appt with oncologist was much better yesterday and so, I have a new neurologist on Thursday and will ask him for the oxygen. I can't thank you enough for your help! ~Chrissy

No headache last night, first night of complete relief in seven weeks. Can someone tell me what dose steroids you all use? My highest day was six 4mg.pills. So, I see that some say when they get down to 20 mg it does not work anymore, I wonder if I did not get the right dosage. They were from a gp. Thanks everyone.

I am dying! I forgot just how bad this is.

No robo for this girl!

How much melatonin do I need to take?

Thank you and it is okay, there is no way to tell if we are boys or girls with these "stage names". My real name is Chrissy. Thanks for the info. Calling doctor in morning about oxygen. I dislike him immensely, but I will deal with it to get it.

I am with you Kat_92! Are you saying you are getting all those headaches because of the medicine?