Desperately need Support

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New Member

Date Joined Mar 2011
Total Posts : 2
   Posted 3/3/2011 9:36 AM (GMT -6)   
Hello All,
I've been a lurker here for some time.  Finally took the plunge and decided to post.
I'm having a terrible morning and need some support from people who understand what I'm going through.
I was diagnosed with pseudotumor cerebri 10 years ago at Mayo.  I'm on a number of medications that help with it and was giving Midrin with good results.  Now that Midrin is no longer made, I feel like I'm back at square one.  So far, I'm not finding much success with other medications, and, as my doctor says, "there is nothing else like it."
I'm really struggling today with a brain buster of a headache, along with nausea, and I'm feeling so alone.  A bit panicky.  Anxious.  And very tired of living with pain.
Help.  I need support today.  I've found that my family and friends are less understanding and supportive as time goes by.  In fact, I know that I've lost friends over having this disease.  I have a wonderful husband and one child.  Love them dearly and feel terrible for being a burden to them.
Anyone have some wisdom to help me get through today?  I feel so alone. 

New Member

Date Joined Feb 2010
Total Posts : 11
   Posted 3/3/2011 12:29 PM (GMT -6)   
Dear Bet,
I'm not familiar with that particular diagnosis, but I can totally relate to everything else - feeling overwhelmed by the pain, and loved ones seemingly distancing themselves.

I woke up with a migraine at 1:00 a.m. and am still reeling. Anyway, you are not alone and I know it helps me to realize that it's not that people don't care; they just feel helpless. Sometimes making a list of things I CAN do with a headache helps. I.E. listen to books on tape, go for a casual stroll, pick some flowers, bake some bread, do dishes (you may laugh at that but sometimes putting my hands in very hot water helps) water the house plants, do some gentle stretching. I also try to reach out to at least one person. Friends often think you want to be left alone when you're in pain, not realizing how isolating it feels. I find writing down my thoughts helps. I can write by hand sometimes even when reading or using the computer is too painful.

Anyway, you are not alone and i hope you feel better soon!

Veteran Member

Date Joined Jan 2006
Total Posts : 1308
   Posted 3/3/2011 12:35 PM (GMT -6)   
Hi Bet,

Welcome to Healing Well. So sorry to hear you are suffering with this especially today!! As this particular condition is difficult to treat I would suggest you keep going back to your Neuro for any medical advice you may need.

However, I know what it is like to live with constant headache as that is what my condition is and has been for 22 years! Hang in there, the only way I have coped on bad days is hour to hour and a day at a time for the rest of the time!!

Do you know what the cause of yours is? So sorry to hear the midrin is unavailable for you, is there anything else your Neuro can suggest to take its place, even if its a poor substitute? Please feel free to rant here as you are amongst people who understand what headaches can be like!!

take care

Co-Moderator of the Migraine/Headache Forum

DX: Hemicrania Continua, Chronic Migraine, IBS, Allergic Rhinitis and Heart Murmur

Meds: Imigran Injections, High Flow Oxygen, Mebeverine, Lansoprazole, Nasonex and Clarityn

New Member

Date Joined Mar 2011
Total Posts : 2
   Posted 3/3/2011 1:00 PM (GMT -6)   
Thank you.

I do need to remind myself to look at the glass half full, not empty. I do need to reach out. I do need to remember that people feel helpless. Thank you for the reminders.

They do not know what the cause of my disease is or was. I had spent 2 years searching, being told I was crazy, a hypochondriac, etc (I'm sure you know the drill!). I spent a week at the Mayo Clinic and they gave me a name for what I had. I almost skipped all the way to the parking lot. Finally, validation. With that said, it's been 10 long years of struggle. I find my world getting smaller and I hate it!

I remember when I was well, I took it for granted. I long for those days, as sometimes I feel like I'm invisible or that life is passing me by. Today has just been a rough day. I need to rest, but I don't want to.

My doctor has offered some muscle relaxants to take in combination with Excedrin. I take amitryptylline, Toprol, and Hydrocholorathiazide in the hopes of keeping headaches away.

I know that there is a hormonal component to it. The nausea and anxiety are new to me.

I need to get reading on this site. Appears to have lots of information.

Regular Member

Date Joined Mar 2011
Total Posts : 20
   Posted 3/5/2011 4:58 PM (GMT -6)   
Hi I'm new here and couldn't help but read your post. I am 19 and am not familiar with the diagnosis you mentioned. I do however suffer from migraines as well and went to a neurologist who tried many different pills as including midrin. I am now on amitryptylline and have some muscle relaxants as well. I take amitryptylline daily at bedtime as it is preventative medicine and the muscle relaxants when I get caught of guard with muscle pain along with the migraine. I can't say the amitryptylline has completely gotten rid of my headaches but I can really see a difference when I'm not on it. I been on it on and off for two years now and I am very happy with it.

Post Edited (losij24) : 3/5/2011 3:04:16 PM (GMT-7)

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