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Being admitted tomorrow.

I made it to Jefferson headache center today and the doctor immediately wanted to admit me today. Unfortunately, they didn’t have a bed so I am going back tomorrow morning. I was there 2 years ago and he wanted to admit me but I was so afraid and then my health got side tracked with other things.i had hernia surgery twice and a reaction to immunoglobulin therapy twice. The reactions to the immunoglobulin product each set me back months. I needed to go on steroids for each reaction and had to do a slow steroid taper with each incident. That in itself was horrific and caused me more migraines. They actually told me the reaction to the IVIG was aseptic mengitis. They did not do a spinal tap but said that his sometimes happens as a reaction to the IVIG. The migraines were brutal.

Anyway, I thought I put that behind me and lived along with my daily right sided crushing headaches and weekly stabbing in the eye migraines but three weeks ago I woke with a killer headache/migraine/tension headache. I had a tough band across the back of the neck, into the traps, down the spinal colum , up the back of the head ,across the forehead and temple. In addition I woke feeling drunk and was off balance. I was told by a different neurologist it was vestibular migraine. Relpax helped the stabbing in the eye but the rest was a nightmare. I have yet to completely recover.
I had trigger point injections with lidocaine only in the neck and mid back and muscle relaxants to help. It’s been a rough 3 weeks and still struggling. Today was a straightforward decision by the doctor to admit me.
This has been going on so long and has gotten so worse. Of course I have my fears about the treatment but at this point don’t feel I have a choice. I cant live like this and need help. I want to get back to my normal daily headaches that still allow me to function. I know it’s
Complicated by the fact that I have different migraines/headaches going on at the same time and of course anxiety setting in when they occur or don’t go away.
I will try to post my experience while I am there. I

  1. Made it in today. PICC line in. After a long day finally starting the meds. Anxiety is high. Everyone here has been so kind, caring and considerate.
    I have a crushing headache and am praying this will help.
    I’ll keep you all posted.

    1. Praying for you, Mela14. Let us know how you are.

  2. I hope you are feeling better. I started getting cluster migraines when I was 21...32 years later....cluster headaches. No doctor has ever figured out what causes them, but I do seem to get more in the Spring, probably due to seasonal allergies.
    A year ago a neurologist introduced me to Zembrace. A sumatriptan auto-injector has been a tremendous help to me. I used one this morning because a migraine woke me up. I had to use 4 injectors over the past week.
    Cluster headaches are called suicide headaches....Clearly I can understand why.

    1. Skychick,So sorry to hear of your cluster headaches. I cannot imagine the pain you go through! Well... maybe I can. Anyway, the imitrex I use gets rid of most symptoms for around four hours. Then, usually I get most of it back with somewhat reduced pain. Since my attacks last 72 hours or more imitrex isn't really doing the job.Glad its helping you. I wonder if it's a different formulation than generic I am using????
      Something strange to me: my neurologist, to whom I go for botox, refuses to treat my depression . She wants me to see my general practioner! What's up? I know depression is considered psychological, not neurologic but they are comorbid.I have had to take anti depressants for many years.

    2. I'm sorry the shot don't help. I know how frustrating it is to have meds do nothing. I am using the prescription form of sumatriptan called Zembrace. I have found that it helps quickly and lasts quite long, sometimes from 12 hours to several days, depending I guess on what the triggers are and cluster headaches are so stinking unpredictable and unknown that they literally have no idea what causes mine. I can have the world at my feet, no stress, happy, and sleeping like a baby, then "BAM!!" I wake up in agony and that can last for several days to several weeks. It's happened in every season, in different states, and under various circumstances and life situations over the past 32 years. Nothing meshes....I just go day by day and pray for remission....whatever it is...it is lousy. I hope this message finds you feeling better.

  3. Hi skyychick
    I’m glad you found something that helps you. Cluster headaches are awful. I’m sorry you have to go through that. I hope your head feels better today. After injecting yourself.
    I woke with a killer right sided headache. My right eye was totally closed. I had righ side nasal congestion....totally blocked and pain right side of head. I felt pain now going to the left side. That started about a week ago.
    My face totally swollen. I think they gave me too much fluids. Which I just confirmed with my nurse and doctor. They said the first day they give you a lot to flush everything your system. Totay I will get a much smaller size infused more slowly.

    The doctors and nurses here are very attentive and come immediately when you call them. My experience with the staff has been good.

    My previous neurologist called that type of migraine Chronic Hemicrania Continua. At times it gets better but right now I am in a bad flare. It’s now 2.5 hours after waking and the headache has subsided. This is the way it goes for me when it’s bad.

    The crushing bright side is better. Maybe all the meds is helping. Who knows.

    Have you ever tried oxygen for your cluster headaches? I tried it years ago and it did not help me but I hear it helps cluster headaches.

    1. MDM
      I know what you mean about the depression. Unfortunately,I’ve never been able to tolerate them. I’ve tried about a dozen through the years.
      I used to take imitrex too but have switched to Relpax. Less side effects for me. Have you considered Treximet? It’s imitrex with Naprosen, an anti- inflammatory in it.
      Do you think you are getting rebound from the imitrex? My neuro said it can happen with the Triptans too. It’s so hard to figure out how to help yourself.
      Be well

      1. I read that rebounds can happen with over the counter medications, as well. It's difficult for people who suffer from chronic pain of any kind to know if the pain they feel is rebound pain from the medications or not. I know that I will only use my Zembrace when the headaches are so bad I cann't open my eyes for whatever light might get in or bear the sound of my own heartbeat because the sound is literally deafening. The struggle is real. I sure wish there were some clinics in my area that specialized in cluster headaches or some clinical trials of medications. I'd sign up!

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