I haven’t talked much about my headaches in a long time. I wrote a post about 10 weeks ago about my last Botox treatment for my migraines. I was thrilled at how well this treatment had been working. I SPOKE TOO SOON.
After the treatment I started having migraines that did not stop. I had a month-long migraine. After calling my doctor I was prescribed a short course of high dose steroids, this helped the migraines, but ended in a horrendous Vertigo attack, that caused me to be put on a month-long course of low dose steroids. Through out the month I was still having headaches. The break in headaches during the short course of high dose steroids didn’t last long.
I have been having not only migraines, but a lot of different kinds of head pain. The one headache my doctor agrees I’m not having is Rebound Headaches. also know as Medication Overuse Headaches. There are certain medications that you take on a regular basis that cause you to have rebound headaches, I do not take most of these medications, and the ones I do take I do not take on a regular basis. I am extremely cautious about this. I am very afraid of getting rebound headaches.
For weeks, months now, I have been having severe pain. It wakes me up at night, screaming, often yelling NO, NO, NO….with tears running down my face. I’ve been studying Mindfulness Based Stress Reduction to help with chronic pain and this has helped, but I can’t control the pain when I’m asleep. I dream about being in pain. I’m nauseous. I wake up so exhausted and I have no idea how to stop this pain. There have been two different types of headaches I’ve been getting that are different from the migraines. One is a sharp pain that feels like a poker stabbing me in the eye, my eye waters and I can’t open it all the way. It’s only on one side. It is the most intense pain I’ve ever felt. I have a much greater appreciation for the song Maxwell’s Silver Hammer by the Beetles, however I wish he would make sure I was dead at the time. (this is only the pain talking) I can only rock back and forth and pull my hair, I scream….it came at the same time each day for 5 days, it would last for about an hour or so, stop then return in about an hour…this would have for 4-5 times each day. Then they stopped, for 5 days, and started again, for 3 more days. To date, they haven’t come back so far…..Yesterday I was seen at Duke’s Pain Clinic, I saw my Neurologist’s (who is a Headache and Facial Pain Specialist) Nurse Practitioner, since this was an emergency appointment. I now have a new diagnosis. CLUSTER HEADACHES.
Cluster Headaches (have been called suicide headaches) occur in cyclical patterns or clusters, which gives the condition its name. Cluster headache is one of the most painful types of headache. Here’s a link to find out more about them at the Mayo Clinic site. Cluster Headaches via Mayo Clinic There are many other good resources on the internet too. Cluster headaches can go away for weeks, months, even years. They often return with seasons. I hope mine never return. If they do, I know they will end, and that will get me through it.
I’m also experiencing a lot of pain in my neck, this pain also comes on while I’m sleeping. It rarely happens when I’m awake. It does cause some of my muscles to tighten, but the main pain does not feel muscular. I must have a CT scan to try to find out more information. This pain started after the Walmart expedition. When I was in the car I was not in a very good position, my head and neck were at an odd angle. I don’t know, but I think this may have attributed to this pain.
So every night at 4 am I wake up in pain. EVERY NIGHT. I try to help it, change position, meditate, massage, anything…. and it will feel better, I will go back to sleep, and about 15 – 20 minutes later I’m awake again…..OH it hurts! and we start again….it goes like this until I give up. I try so hard not to wake Stuart. No need for both of us to lose sleep. I’m exhausted. Sleep deprived. Some days I can nap a little. Sometimes during these naps I will wake up screaming. It is terrifying to wake up screaming and crying. I know my husband is so frightened for me. I hope the CT scan will give us some answers. I also hope it is something that can be easily fixed.
Why suddenly am I having headaches that wake me up with so much pain? Why am I having headaches that are so different from headaches I’ve had before? We don’t know. There is no known reason why Cluster Headaches start, some studies suggest certain things, but there are no conclusive answers. My other headaches? We are working on finding that out. My CT scan is schedule for June 16th, and my return visit to the Pain Clinic is on the 19th. Hopefully, I’ll have some news then. How I’m going to sleep until then, that is a mystery……but one I’m sure I will unravel.
Bang! Bang! Maxwell’s silver hammer
Came down upon her head
Bang! Bang! Maxwell’s silver hammer
Made sure that she was dead
Picnic with Ants 
Hey Wendy
I’m so sorry you are having cluster headaches.
I hope they get it resolved soon !!
I’m going to do my Duke appointment update here.
I had the lumbar puncture Wednesday at Duke. I was soo scared !!! It went fine. They took such good care of me. I hardly felt anything during it ! Now later that day and still today I am very sore, but I can deal with it.
My spinal pressure was slightly high so the Dr. Drained some off.
I didn’t realize it til later that day when talking to Dr. Kaylie that I felt better. I wasn’t nauseated, I had been in fluorescent lights, in a crowd, around ceiling fans ! My husband had already noticed !!
He wrote me an RX for diamox.
I will get to take one tonite.
The pharmacy didn’t want to fill it bc it has sulfa in it. Dr. Kaylie overruled them !
I asked Dr. Kaylie that day “can I be a little bit excite??”
He, said “yes”
So hopefully we are on the correct path !!! If the med doesn’t help there are other things to try !
10 YEARS of being treated for Menieres !!! 10 YEARS !!!
Wendy I can’t thank you enough for telling me about Dr. Kaylie !!!
I now have hope.
Feel better !!
Carina
LikeLike
You are my reason for all of this. To help just one person. To give just one person hope.
May all the kind forces of the universe listen and make this happen for you.
The soreness doesn’t last very long.
did he write you a prescription for Klor-Con?
you need the potassium supplement, with diamox.
if not, remind him.
(I’m on it too.)
best to you always.
wendy
LikeLike
*Hugs* I hope you receive some answers and help at your appt. The last thing you, or anyone, needs is something else that needs treating.
Love the attitude of “one I’m sure I will unravel.”
LikeLike
always a good mystery! I had a doctor that once said…..can’t you ever have anything easy?
maybe not, but at least I’m willing to work with them to help figure it out.
When I went in to the pain clinic and saw the nurse practitioner, my neurologist told her…oh no…they are both so sweet.
She was so upset that I was having troubles. We’ll figure it out.
Tonight, a late night epsom salt bath, and a heat pack….different trial. crossing fingers.
(I’ve done epsom salts and heat but not late so maybe???)
LikeLike
Have you tried acupuncture? Chiropractic? Marinol?
I’m pretty sure you don’t live in a medical marijuana state. That often can help with severe headache pain. Marinol is a TCH pill approved by the FDA.
Just thoughts. I had cluster headaches. Chiropractic helped a great deal. So did acupuncture (don’t use together).
LikeLike
Have used acupuncture in the past for things…tried several times by several different practitioners, each time i got very sick. I think my body just doesn’t like it, or is too sensitive for it? Chiropractic I’m not allowed to do because of the spinal fluid pressure problems, but this will be discussed if this keeps up. No we don’t live in a state that has legalize marijuana, but I’m not going to say I haven’t tried it. With asthma a tincture of it works to some degree, but obtaining it is the problem.
I’m really hoping the cluster headaches will leave me alone…I know a long shot. The neck pain head aches that are waking me up at 4am are scary and I’m at a loss. Nothing seems to help!
thank you for the suggestions. all are welcome!
LikeLike
I used to have cluster headaches. Had them for about 8 years and then they vanished, never to return. I’ve had some bad headaches since then, but nothing like a cluster headache. Have you been to a pain clinic? Fingers crossed for you!
LikeLike
Marsha,
Yep, I go to Duke’s Pain Clinic. My neurologist is a Headache and Facial Pain Specialist. She is amazing. I just keep coming up with something new for her to tackle. I’ve been told numerous times, by different doctors as they get more confused, “Wendy, things don’t work on you the way they are supposed to.”
or as one doctor said….very lovingly, “you’re weird.” no, I was not offended, we had that kind of a relationship. I said, “I know that! Now what?” : ) I have no doubt that we’ll work it out and the pain will get better. If not, then I will learn to handle it better.
LikeLike
Probably you have something going on that they don’t understand or have not recognized. Sadly, sometimes it takes years and years to find the other cause(s). I’ll be holding you in my thoughts.
LikeLike
I have no answers but love you and wish for these headaches to permanently leave.
LikeLike
Lisa,
thank you my friend.
I know you do.
I also know you deal with a lot of pain yourself. that I would take away if I could.
This will get better, or I’ll learn to deal with it better. That’s how we roll right?
xoxo
LikeLike
I knew you were having new pain areas, but I didn’t know the frequency. It seems to me that having a pain event the same time each day might give the drs. some clues as to what’s going on. Never heard of anything so regular and regimented. My positional migraines happen between certain hours, but never the exact same time.
Interesting re cluster headaches — at least have a diagnosis and perhaps things that can be done to make them better. I had been told that men, not women, get cluster headaches, and women, not men, get migraines. So much for that theory.
Sounds like pain in the “really scary” category if you are screaming! So sorry.
Really hope the pain monster gets out of your closet, up from under your bed, and takes his suitcases and goes.
Thoughts are with you.
LikeLike