My "episodes" are each becoming constant

[bbisweary]

Hi everyone, and God Bless you for being out there!  I get so depressed sometimes, and though I have a very supportive family, they just have no clue how I feel, but you do  Thank you for just being willing to help. That said, I have a question for you. Did your symptoms go from intermittent episodes to constant?  For instance, over a year ago when theses debilitating headaches started, they would come and go during the day.  Now, as of a few months ago, they are with me all day and night, never ceasing. The intensity is the only change.  Recently, my gait and coordination problems have started coming on more frequently and have started lasting all day. I look like I have MS or even CP.  I stagger, have to scoot my feet to walk, or scoot on tiptoes (don't have a clue why I do this), my eyelids and mouth droops, my speech slurs, and I have this dystonia or spasms in my neck that looks like seizures, (they aren't though) and my nose runs a clear liquid out of the right side. This is now going on several days a week.  Will these things and other problems start being a daily battle like the headaches? Dr. Di told me I would start getting worse by the day, I guess somehow he can tell.  But....my surgery isn't until September!!! I am still trying to work and it is getting harder and harder. I push myself because I need my insurance.

[DechenDolkar]

I am so glad you are all here too and that we have each other. It is not easy for someone who doesn't have this to truely understand what we are going through. I feel like I am getting worse by the day. I too mess up my words, I have tingling in my hands, feet and the back of my head at times. I can't stand this awful pressure in my head! I too feel that surgery is in my future and as much as that scares me, the thought of living out the rest of my days like this is just as frightening. I need to be able to function for my little boy, he is what keeps me going. Many blessings to you and your family!

[CorBrenSky]

I just want to say I have been reading all these comments you guys are righting and it makes me feel better to know i am not alone and  glad to know sone one is even close by (redkim). I mess up my words alot and im embaressed all the time cause people gigles and make jokes . But after 7 yrs I know why i am doing it . MY left arm has become partly Numb permenatly . I get so weak and Tired i just fall like some one kicked me in the back of my knees . My last hard episode was easter weekend spent sat. before in er I couldnt even move my left leg it was so bad . The pain in my neck and shoulder is all day every day now. headachs are of and on all day .  Cant sleep more then 2 or 3 hr at night. So i have decide to have the surgery before i have another bad episode . I have three sons and one has CP and if i am home alone i could not baer what that would do to them . MY two younger boys saw there big brother have a full blown sizurer for the first time a few yrs back now and they where so scared . I just cant let them be scared like that again . ...I am sorry for ramballing its just great to have people to talk to .

[DechenDolkar]

My headaches have been constant now for about three months and seem to be increasing in severity. The pressure in the back of my head is so awful it feels like it will blow. I am also so dizzy and tired. I have also been getting really bad lower back pain, but I don't know if this is related. I received my TENS unit yesterday and was instructed to use it 8 hours a day. The tingling is a nice distraction as I try to focus on that instead of the pressure. I have also been having a really nasty sensation in the back of my head, it feels like my brain is rubbing on a really uncomfortable fabric and I also feel that sensation occasionaly behind my eyes. Anyone else experience anything like this? The weather here has been awful, rain everyday. I am hoping I will get a little relief once it clears. Blessings to you all!

[redkim]

When my headaches come on I do notice that my speech is slurred, and it feels as if my throat or mouth is to exhausted to work properly.  I also notice I tend to drag my feet when walking a lot more now, and can only walk slow and have to ask hubby to slow down so I can keep up...

I am dizzy more often now and my vision blurrs and my eyes water, they will actually tear for no reason...weird.

I wish you the best, I did find relief of my headaches after surgery.  While I still get them and sometimes bad ones, they are not as frequent.

[*Stormy*]

Unfortunately...from my experience the answer is yes. Like Selma said, for years I noticed the headaches getting longer in length, when I would get them they would last up to a week or two and then go away. Then the "go away" time would keep getting shorter. When some more noticeable symptoms came on (limb weakness & tingling, pressure headaches, floaters, leg pain), for me it went from cycling to permanently disabling in about 4-5 months. I know I say this a lot but my quick progression had a lot to do with having no dx, told it was stress so I contined and actually increased my daily physical activities!! So hang tight, try to avoid triggering your symptoms as much as possible (I know how hard it is sometimes!!) and I pray that you get called in off of that cancellation list!

Carolyn

[WarriorMomma]

so glad you posted this.

I am feeling the "episodes" happening a LOT more often now too. That's what brought me to this site, which took me to the Cleveland Clinic after a disappointing event with Neuro here...

My left side is going numb a lot more often. lose my words. right now it is painful to type but only on my left side.

working on FMLA now. So sad...

[selmaS]

U r welcome...u r out of paid sick time, but u have FMLA time left..right?

How much of the FMLA have u used?.....U only get so much time and once u use it all u can not use it again until u work another 1250 hrs......and that takes 12 months working full time..... SO do be careful of the FMLA u r using now.

I was a HR manager b4 I left my job....so I do understand some of these things......


Getting on the cancellation list is a good thing....and I hope u r able to get in sooner.

I had 2 yrs of misery b4 I even got a dx, so I do understand how u feel.

Hang in there and go slowly : )

"selma"

[shanmomof3]

Unfortunately i know what you mean by getting worse by the day. I saw dr. Heffez in feb and i decided to wait until school was out to have surgery, but i have gotten so bad that for about 3 weeks i have been kicking myself for waiting so long. Anyway (sorry didnt mean to babble) what i was gonna ask was does dr. Di have you on a 'move up list'? I know a few people who were recently moved up by a month or more with dr. Di. Just something to check on. Blessings ~ Shannon

[bbisweary]

Thanks, Selma. I have tried to explain things to my work.  I have a working FMLA but have run out of sick time, so I drag in to build up more time for my surgery.  I am just miserable, and have been for at least a year, but the intensity of it recently is maddening.  I called Dr. Di's office last week because I was having intense pain with any tilting of my head while working.  They said I could wear a neck brace just when my pain was unbearable and that might help.  I asked to be put on the cancellation list.

[selmaS]

I am sure u will get many diff answers...but looking back, for yrs they were on and off....and then I had a drop attack and things just kept getting worse and more intense.....

There is no rhyme or reason as to when u will get worse...it could be a fall, a MVA, or a hard cough.....everyone will have a diff trigger and a diff response.

U have a good dr, and I understand needing ur medical insurance.....hang in there and try to rest as much as possible when at home so u can continue at work...and depending on ur boss, they may work with u if they know/understand what is going on....that is something u have to decide and may wait until u have no other options......


If u feel things r getting worse and u don't think u can wait till Sept....see if u can get on a cancellation list .

Hang in there

"selma"