Jerri's story & Dr visit

I have posted some of my story elsewhere but just a brief recap. I am a 58 yr old wise, mom of 4 adult children a grandmother of 5. Blessed with many talents I also suffered from various types of migraines since my youth. After a necessary complete hysterectomy in 1994 my migraines took a turn. While I think I have suffered from Basliar, hemipplegic, occipital, and other migraines almost all my life, they were far and few between and on a small scale. Around 1995 I began having sudden drop to my knees headaches with what seemed like bizzar symptoms like tremors, double vision, jerky movements, paralysis, speaking problems and more. I saw a well knowno university "headach " neurologist and despite lots of tests and medication, etc, we did not find what caused the headaches. I began seeing a neuro-pain specialist for degenerative back disease and the headaches in 1999. He is a genius with medications, personal chemistry and finding combinations that work. It took a year but then went until 2008 with very few headache episodes. Suddenly one day during a sense of very well being, I suddenly felt a suge of vertigo come on and thought it was allergy related. Before I could go take an allergy pill, my legs became so weak and wobbly I could bearly stand up, followed by tremors, loss of bladder control, feeling like I could not breath as well as falling into a deep sleep. I was rushed to the ER thinking I was having a TIA / Ministroke. I was admitted lots of tests were run but nothing was found. I was diagnosed with Basliar or hemiplegic migraines. During the last few years I have had only a handful of migraines with very little of those being these rare ones. Onn Aug 23 of this year, 60miles from my home a 5.8 earthquake took place. At it's conclusion, I began to have inner tremors that lasted several hours before a long series of typical HM symptoms similar to those I had experienced in 2008 except more, stronger, and lasting longer. I don't recall much if any headache. What I did have was two weeks of lingering vertigo, weak legs, and speech problems. During that time and continuing to this time, I have had repeated similar HM and symptoms, sometimes several times a day, other times a few days apart. My neurologist that i met at the hospital in 2088 had been good at diagnosing these migraines but now in a time of need had few answers of what Medications or even information that could help me. I decided I needed more help and made an appt with a new neurologist. Not only is he close to home but his website claims he specializes in migraines. Yesterday I had my initial visit with him. While he doesn't have the armest personality, he asked lots and lots of questions, spent a lot of time with me, added some spot on ideas of things he thought maybe I had experienced in lfe, was very informative about his observations, areas I need to work on, and a list of things he may do test and treatment wise when all my medical records arrive. He gave me firocet to try and see if that helps abort this series.and explained that I am also having cericalgenic migraines which may be triggering the HMs. I walked out of there feeling like someone was really thaking me and my health seriously for a change. I will see him in a month or sooner if my medical records arrive and then he will call me in sooner. Can I just say I an thrilled and hope this is the beginning of some good things. His plan is for us to work on finding what my triggers may be and of douse avoiding them. Besides some further tests, to have some cervical (neck) injections od lidocane and cortisone, then some physical therapy to get my neck muscles to loosen up as it is rock hard up my neck and to the skull. I will keep you posted as to how things progress. Hoping all of you happy, pain and symptom free days.

Jerri in Virginia, USA

PS please forgive my spelling and other errors I am hen pecking From my iPad.

Just when I thought things were getting better.... You know how it goes. We had new cabinets made and this week a friend put them in during his free hours. The pounding and other noise, as well as the need to clear out everything from the kitchen, etc really were not needed. I would have left the house but there were others circumstances preventing such. Let's just say I am back at squares one.

Besides this my new neurologist called after looking at several of my MRIs and told me we wre going to start looking at multiple sclerosis as being another problem I am having. In conjuntion wiyh several kinds of migraines he feels i get. I will go for another MRI soon. Oh happy day, those things are not my favorite, and I am noy a wuz. I endure epidural cortisone shots with out sedation, etc.

Among other things all this week I have been unable to walk without aid. Some of my symptoms come and go along with the headache, but some other symptoms just never go away, and these seem especially bad in the morning . Does anyones else have this kind of pattern or MS as well as HM or BAM headaches? If this is the case it would be nice to hear that i am nounalone. And any advice woukd be wonderful.

Jerri wondering "what goes?

Hi Hunny

So sorry you have gone backwards

You are not alone. I have HM and the symptoms or pain and aura have only ever gone for a total of 3 days in 5 yrs. And they were weeks apart.

My levels to change, but never go. I always have a back ground headache and some aura... I have found that the more I do the worse it gets I too an worse in the mornings..... only to get at my best around 11pm - just in time to go to bed lol

Been a hard week, as I am trying to find a new school for my son and its taken a lot of thinking about.

As to advice - when you are back at square one - rest and rest and rest - then take a deep breath and fight again............ Sod everyone else and get some 'me' time. I do find Indian head massage of help - I am booked in for next week.

I am sorry to read about the possible MS and the MRI - but on a plus side at least they are trying to help- and once you know the full dignosis you can plan a way to fight it.

Big hugs - hope today is more restful for you

x

Dear Tee
Thanks for you comments that come from experience, testimonials, and honest caring to help others. It means a great deal as I am sure you have heard from others on the forum and others who support you. Bless you for all you do and put into this great site on top of your work as wife and mother.

I agree with you about the possible MS situation, and I have always said in the past that a diagnosis is only based on something that is already there. Finding the problem, coming to understand it, and working with it along with possible treatments can then be initiated and only improve our well being. So as you said, I am truly grateful for a doctor who is looking at the whole picture and seeking answers.

My crazy few weeks has drawn to a close and I can now give my body the rest it needs. In may we order for new kitchen cabinetry from a cabinet making school, purchased all the specialty wood, and drew up the plans. The new kitchen was to include many features to make it easier and more accessible. Two weeks ago they arrived a beautiful dream come true, something I certainly never thought we could afford. I paced my self and methodically removed everything from my old cabinets and drawers in preparation for the big change. What I did not think about was all the banging and commotion to change out the cabinetry. Mama-Mia! I am even more certain now that some of my triggers are to do with physical and audible vibrations especially those that follow a repetitive pattern. To make it worse friends were doing the job in their free time, so it spread things out for a whole week. The good thing is, they are done, my kitchen is beautiful and everything is put away again.
In late Aug we had planned and prepared for a big 50th Wedding Anniv for my husbands aunt and uncle. That was when the hurricane hit us, and so two days befor we cancelled, and thankfully all the food except the salad could be frozen. Among other thingd I had also cooked 7 trays of Chicken Marsala which I promptly frozen until we could reset the date. Today we hosted the party. Many in our extended family helped and it was a marvelous time. While I was there in body and got thru what I needed to do, I have to admit the brain fog was heavy. I am a very organized person and so when it was over, I was able to quickly gather up all my things and depart leaving the clean up work to others for once in my life. So in a sense I pulled the plug and am looking forward to a mental and physical health vacation now for as long as it takes.
The other day my husband finally saw my problem in action. My dog got out of our yard and ran after a dog being walked. I tried to stop her but my body would not move but very slowly. Thankfully my husband caught our dog andno one was hurt. However he could not understand why I was not rushing and why I did not apologize to the lady. Suddenly he realized that I could hardly move and could not speak. I rarely cry for myself, just usually over silly movies or touching songs. That day I just plopped down and sobbed and sobbed; not just for me, but for the trams the dog and walker experienced, as well as that my dog now senses my low energy and feels the need to defend me. Sometimes bad experiences are needed to help others and ourselves recognize the reality of things.
I have faith things will get better and as you have said the way it is going to happen is by a lifestyle change now. Thanks again for sharing your experiences and your warm hugs.

Jerri

Oh Jerri thank you so much for your opening paragraph - means a lot and had me chocked - needed it today - I am on day 3 of a big one, managed to make it downstairs today - but everything is so loud Why does our hearing turn supersonic when our head hurts so much lol

I am pleased the kitchen is in and now you can rest - we all do these things and knock ourselves out - Jane is for ever telling me off about the kitchen floor - it seems when ever I get a little better I see the mess on the floor more and get the urge to wash the floor - only to end up back in bed lol Today I cannot even see the floor lol

I understand the frustration and the good cry - I thought I did all my crying when on Topamax - then I was crying a river a day lol - but even I had a sob moment this week - when I had to retreat to the car hlaf way round looking at yet another school

My son is so understanding - but I do worry about the effect this all has on them........... he is doing a project on fairy tales at the moment - and at one task he was given 3 wishes - all the other kids where wishing for PCs, TVs, money etc............... Alex's first wish was for me to not have migraines (oh sod it crying again)

But yes you are quite right - life style changes is the trick to this - just sometimes life gets in the way lol

xx

I thought I updated yesterday but don't see it now, so will retry. Sorry if repeated. My neurologist went over my MRIs and has concluded the old lesion has never changed in the 15 years since it was first spotted. Further concluded that I do not have MS (Big whew!) and still feels I have multiple kinds of migraines. Gave me a headache diary to keep so we can better understand things. He put me on Topamax at a very low dose as it helped in the past when I had previous migraine bouts. Found it made me break out in an awful itchy rash so discontinued. Just prior to the neurology appt I came down with a UTI and my regular doctor put me on antibiotics. After a few days I felt FANTASTIC, only to find I went down hill again just as fast. A second then third course of antibiotics with same results. I am now on a fourth course along with a taper course of prednisone. The horrible pains and burning in my hands, forearms, and feet have almost completely deminished, I am finally getting some quality sleep at night, and above all am feeling much better. This also includes my headaches. I am still having some low grade headaches like a pressure on the right side but nothing like before. The other horrible symptoms I was getting with my migraines are deminishing but some noises and vibrations still are difficult to manage. I did find I was having problems speaking and walking the other night but that was just prior to starting the prednisone. This all makes me believe that I have some kind of bacterial infection problem. Also found a nodule on the side of my right temple between soft spot of temple and corner of my eye. It is sensitive to the touch and seems to ignite some headache activity. Will point it out to my doc. asap. Otherwise, I feel blessed to be feeling so well.

Jerri

no MS and no growth of lesion

The antibiotics is a real puzzle - I have never heard of them making migs better before - but they obviously do in this case - is there any tests a docs can do to check for bacteria?

Have you ever been tested for Lyme Disease?

Yes, they have tested for Lyme Disease a number of times in the past and I always show negative. However, it comes to mind in writing this that I should further investigate this as I have been known to provide false positive or negative readings to various medical tests. The doctors in my state are very conservative and even somewhat backward and I think if I were being treated in a different state they may have answers to my condition, somethings which I have suffered with far too long. As for why my antibiotics are working to reverse my migraines I can not fully say. Were they infectious related or did an infection or other disease make me susceptible and in a weakened state. I wish I knew the answers. Sadly due to all the levels of antibiotics in my system at this point we can't really know what the actual bug was. I will likely have to heal for now and then if the symptoms begin to return be tested to look for an infection from there, knowing this pattern seems to repeat itself. My concern is that if we don't find answers soon, that at some point I will not pull out of the infection. I hate to be negative and will continue to hope and pray this does not happen.
Best wishes, Jerri

Hi Jerri

I have had an interesting day ...... to cut a very long story, it was suggested today I should consider being tested for something call HaNDL - and once they talked me through it - you came straight to mind - it is a syndrome which is caused by an infection and gives headache and neurological symptoms! - talk about fate

I have never heard of this until today so my knowledge is limited - I am of course researching it now - but thought I should let you know..... Have you ever heard of it?

Wow! Now if that isn't timely or what? Thanks for shaing, I will look into it on my end but will be interested to hear what you learn too. With all the things that have been happening with me and my doctors not knowing what to do next, I am thinking of going to an immunologist next. It will likely take a long time to get in to be seen, as that is the typical problem as a new patient and specialists. Since I am not a doctor I can't say what really is the cause of all that I have gone thru leading to and including this infection. I just know that it is as I have said and how terrible I can feel at times. Now with the multiple courses of antibiotics and prednisone I have to wonder "will it stop now?" And if this does not work, what then? Faith is an important factor in getting well. Your response today feels like an answer to a prayer.

Thanks so much!
Jerri

Dear friends
I had two wonderful months with only a few minor migraines. However I also enjoyed lots of energy, and felt 20 years younger. My other medical issues took a vacation also. I sang, I ran, I worked, I played. It was a dream come true, the answer to many prayers, and I lived every day to the fullest! The old me was back! Gosh, I had missed that person.

It appears as I have mentioned before that there is something going on that creates infection in my body and my migraines are then eventually triggered. After a wonderful illness vacation, it sadly ended and on New Years Day They came back. I had noticed the tell tale signs of another UTI coming on but had not gotten to the doctor in time. The migraines came on full blast - no holds barred. This supports my previous connection of infections, migraines, antibiotics, and my feeling / getting better.

I have seen several neurologists since last Aug when this all came on ( again.). The migraines being in the Basliar or Hemeplegic Family and once they start it becomes almost a daily battle. They have tried meds but really are baffeled and not of that much help so far.

After my newest crash, I was put on another series of antibiotics, then another, then a combination, and prednisone. At first it helped then when the courses ended in a few days I was at square one again. My doctors are at a dead end of knowing what to do. I was sent to see an Immunologist Who is also a rhuematologist and /allergist, he was great! He believes I am actually suffering from a kind of arthritic disorder that has attacked my internal organs and also causes infections. He believes this kind of attack , inflammation, and infection is how my migraines are tied into this picture. We are waiting for the first set of tests and then more decisions will be made. I pray he is the doctor who can answer this messy problem and open the door to recovery.

For now it is a life of tremors, jello legs, poor dexterity, poor vision and all that jazz. Oh yes, that good old migraine pain as well. Additionally, my back pain, digestion, and osteoarthritis are in a rage too. It stinks, as you all know, but I am trying to keep a good attitude and do all the healthy living skills that I know really count.

Most of all, I have great hope and believe there are answers, and that things will turn around....those great two months proved that. Had not been to this site for awhile and I just wanted to check in and post an update. As things continue or change I will make further posts. Until things change for good, I will keep clicking the heels of my Ruby Slippers and believing good things are about to happen. Big hugs to all, Jerri

wow Jerri thank you so much for the update - that is wonderful news - it shows that you respond to mediation if nothing else - which is so promising as once they get it perfect you are going to be fine...... I do hope they find something in the tests....

Keep clicking those slippers hun - one day they will take you home

Thank you so much Tee! That is how I feel too and I remain hopeful. in fact those kind of thoughts are what keep me going. However it seems during times of pain, that it is harder to see as clearly since pain can seem to drag on for so long. So for now it is lots of rest and watching good programs like Dowton Abbey on Netflix and PBC. actually I am up to date now on Downton, so will have to find a new show for this afternoon. Can't wait to get season two of Sherlock. Hopefully next post I can deliver some really good news. jerri

Good morning....

Just wondering how you where getting on????

PS I love the new Sherlock