Nervous about Appointment with New Doctor Tomorrow

Off to see a new specialist tomorrow; she's a diplomate in headache medicine. I made this appointment in April, so I hope the long wait means she knows what she is doing.

Thing is - I'm a nervous wreck. I feel like I have a lump in my throat. I guess it is the long wait for the appointment and the long drive to see her and the fear that my new hope will be dashed again as it has been so many times in the past. Even though I've been trying hard not to hope.

I'm sure nothing too important will happen - it is just the first visit.

Now if I can only fall asleep tonight.

Hope it goes well!

Headache docs should understand the emotions which comes with chronic pain

I hope this went ok for you - the build up can be so hard xxx

Do let us know how you got on. Finding professional that really understand what a migraineur goes through seems to be a common problem. It's nice to discover that there are some out there.

The new doctor spent about an hour and a half with me and her physician's assistant joined in. The interview lasted about 45 minutes and the doctor asked me questions I don't recall being asked before. I also don't recall any doctors spending that much time talking with me (and I've been seeing doctors for this since 2004). She then gave me a couple of injections of a numbing agent and steroids as a diagnostic test. No other doctor had offered this test to me. She told me to call her office the next day to report how I felt the previous evening and that morning (as a result of the injections). I left a message with receptionist listing my pain ratings. The P.A. called me back later to clarify and ask a couple of other questions. (The injections only provided only a very limited sense of relief for a few minutes).

I'm to keep careful records of symptoms on a form the doctor provided until I see her again on August 3rd. I told her that often my other non-pain symptoms seem more disabling than the pain itself. She wants me to rate my pain and my level of disability from the other symptoms separately in an effort to determine if the pain and the other symptoms are all part of one problem or if they are in fact two different problems. This is a new strategy for me.

I'm relieved that she seems to have some different tools and ways of thinking about my problem. Only time will tell if she can help me, but I'm willing to try. Also, she seems to have better social skills and conveyed more interest than other neurologists I've seen. That's nice in and of itself. Considering how much time she spent with me - I'm sure the bill will be huge - but maybe it will be well worth it.

Wow! that sounds like progress. I've never been able to convince the medical professionals that pain isn't always the most disabling part of my migraines.

I'd be interested in how you are to record the non-pain symptoms. I've been trying to create a form I can use that charts the non-pain symptoms and their severity, but I haven't come up with anything that satisfies me as yet.

As an aside, I did spent two hours over two sessions with a neurologist a few years back, but he was very adversarial and his conclusion was that the symptoms I described just couldn't happen.

Oh Laura that has so made me smile - she sounds like she cares which is 90% of the relationship you need to build with her......... I do hope she comes up with a plan that helps xxx

Do let keep us all informed.

pīwakawaka - The charting of non-pain symptoms is nothing complex. I'm just going to use a 1-10 scale to rate the level of disability I'm experiencing from the weakness, brain fog, dizziness and disconnectedness (wbdd). For instance today the pain has reached about a 7 and the wbdd is an 8. The pain exists continuously 24/7 - but varyies in intensity. When the wbdd arrives - that is when I think of myself as experiencing a migraine. Sometimes I need to add a third "d" to the mix - diarrhea - But that occurs only once a month or so. When that happens I'll add a note. I do need to track whether or not the pain intensifies when the wbdd hits. I'm trying to figure out how to note that.

If I wanted to get more particular I could try to rate the wbdd all separately with their own 1-10 scales - but I'm not getting that specific at this point.

Thank you all for caring!

Using a scale is where I fall down. During my recent hospitalisation, I was asked every 2 hour what my pain level was on a 1-10 scale. Sometimes I was able to give a reasonable precise measurement like between 6 & 8, but at other times the best I could do was more than 1 and less than 10. If they had asked me whether the pain stopped me from going to sleep or if it made me want want to throw up, I could probably have answered yes or no. But beyond that I couldn't be more accurate. Whenever I was pressed to be accurate I would simply choose a random number or answer yes to whatever number first suggested by the nursing staff. Not the best way of measuring pain I must admit.

I don't know whether this lack of self awareness is a product of the migraine itself, or whether it's an adaptive coping mechanism. But what ever it is, it makes measuring quite problematic. That's why I'm looking for ways to record the symptom I experience.

Have you seen this pain scale drawing before? It's supposed to be humorous - but I find it is also quite helpful.

http://hyperboleandahalf.blogspot.com.au/2010/02/boyfriend-doesnt-have-ebola-probably.html

Perhaps it's the Aspie (Asperger's Syndrome) in me, but the faces are even less meaningful than numbers. That's certainly the case at the moment when I don''t have a migraine. I think it would be even more so when I did.

Without the brain fog I can probably measure pain as accurately as anyone else. But once the fog descends, it's game over.

I'm Aspie too.

I find the pain scales very difficult. When I was last in hospital, each time they asked me to rate my pain, I said it was a 7 or 8, They were only giving me paracetamol, my care plan says I need intravenous morphine when I get to that level, I had almost shut down due to the pain. One time, my husband was there when the nurse monitored me. She asked my pain level, I said 8. She wrote '5' on the scale then, realising my husband was watching, she changed it to '8' and got some oramorph. My husband checked through all the records for that day and the pain recording was always a '5'. The pain chart says nurses have to treat the pain if the score is above 5 so we think they had ignored what I was saying because they couldn't be bothered to go and get the medication.
I discharged myself that evening because they refused to treat me and wrote a long letter of complaint. I never heard back though and have since refused to go into hospital if I'm likely to be admitted to that same ward.

That is so terrible! Where is that hospital? I want to make sure I never end up there. Did you tell the physician who wrote your care plan?

Yes, I sent a long letter to the person who had initially suggested the care plan. He said he would 'investigate' but I never heard any more. About two months after that, I had a 4 day migraine and needed urgent medical treatment. A doctor visited me at home and, on his second visit, said he wanted me to go into hospital but I said I would only go if he could assure me that I wouldn't end up in that same ward. He couldn't promise so I didn't go into hospital. It's in the south west of England so you should be ok