It all started in Jan of this year wit ha pain behind my right eye. Went to the ER cause that's what my eye doc wanted. They did a regular CT found nothing. My eye doc sent my to a neuro eye doc and he sent to for an MRA w/ contrast. I walked in and I came out in a wheel chair. That evening I lost the feeling in my righside had slurred speech facial had dropped. My ct's mri's and mra's all were normal except I had 3 vertabrates that were hernated.My blood pressure was high then would drop very low. I had a very irregular heart beat. I had extreme pain in my head on the rightside of my head only and when they flashed a light or a bright light was in my eyes it would throw me into a seizure. I would have a full grandma the seizures would last 2-4 minutes. I had a eeg and that was normal. When they tried to do the PT on me I would only make it 2 steps and then the pain in my head we go off the charts and then I would have more seizures. I was like this for 14 days and in the hospital. The docs and 2 different nuerologists said that I had "Conversion Disorder" and they moved to a physc ward. They said that I was doing this to myself. So I didn't stay in the ward I removed myself. I found more docs and they also said the same thing again.
Then I went to Mayo and they said it was "Cluster Headaches". The funny thing there was they said I had mysterious inflammation. My sed rate was high. So they put me on Methiprednisolone(zpack). So I did good for 10 days on the meds topomax, verapamil and immatrex and oxygen. So when I started having seizures and really bad migrianes and not able to move and slurred speech and facial droppage again I went back to the ER and they gave me a the z pack and sent me on my merry way. So I had a month follow up she then said that I needed to have a physc consult cause all my test results are normal and there are no reasons for me to be having the symtoms. So I told her no I'm done I'm not crazy and I don't make this up and if I did I deserve an Emmy.
I've been threw almost every hospital in my area now don't get me wrong they are all in the same network. My family thinks they are covering for each other. I just need help and advice cause I know that there is something wrong with me and if I have to travel to get help I will at this point cause I can't take the pain from these headaches they claim I'm having. So I did some research and found another neruo/internist and she has now diagnosed me with " Complicated Migranes" and she has me on Verapamil, Topomaz and Butalbital. I haven't had a full blowen migriane but my head hurts all the time still. The pain just won't go away. Sometimes my face will drop and sometimes I have a hardtime speaking.
My symptoms are as follows my head hurts to the point where the pain is disables me, vomit, slurred speech, rightside weakness, facial druopage, heart feels like it's going to jump out of my chest, dizzy, no balance at all, and this last for days and sometimes weeks, hard time speaking
So I'm asking anyone and everyone for advice. I need guidence cause I'm 31 and I don't understand?? I don't want to be like this and I've never had a headache like this and for so long. I've also had my life turned upside down cause of it and I just want a doc or a direction that I need to make it better, So if anyone has advice or guidence please feel free to share. Thanks so much. I'm sorry for the long novel but I wanted to share my complete story
Welcome to the migraineur's support group. It's been quiet in here a long time, but I still try to check from time to time and saw someone actually did a new post!
So you say you have three vertabraes that are herniated- that definitely is not psychological- how do they blow that off? Which discs are herniated? Has anyone tried reduction or other conservative approaches for those specifically? This is an area you should latch onto to find out if it could be affecting you with any of the symptoms you are having. Have you seen a neurologist about the herniations?
They should not have risked your building a tolerance to antibiotics you may not be able to use when you need them on the strength of an elevated sedimentation rate alone, as this is a sign of inflammation. I've never heard of an elevated ESR being used as THE criteria for an infection that needs antibiotic- did they discover an elevated white blood count along with it? Or take a lab sample that grew back organisms like pseudomonas, streptococcus, or ? so they could pick the best antibiotic for your particular infection? I once had a doctor tell me a person could get an elevated ESR from a hangnail (don't know if they were exaggerating)! Did Mayo not suggest trying to locate the mysterious source of the inflammation process?
You spoke of your blood pressure being erratic... and your heart beat as well- have they done a holtor monitor on you? Have they taken your blood pressure and pulses laying and standing?
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