Discussion in 'Fibromyalgia Main Forum' started by mtnfla, Aug 5, 2005.

  1. mtnfla

    mtnfla New Member

    This is a bit long,sorry..

    Have never experienced anything like this people,this pain was way off the 1-10 pain scale and paramedic said 12+ wasn't an option so I replied above a f'en 10.... On Wed I felt the best I had been in several months and boom right in the middle of grocery shopping with my Dad and Niece it hit me out of no where.First I had a stomach cramp and than got this instant pain in my head like a knife being jabbed in and out of the top of my head at the same time felt like it was in a vise grip being turned so tightly I could hardly see or breathe..Rescue was called by several people there that 3 abulances show up for me,thye worked as a team,wonder if I'll get a bill for all of them...I was so worried about my Dad because of his health condition and told my niece to drive him home ,but he insisited she rode with me in the rescue unit.My son didn't know what was going on and was at my Dad's place when he got home,so I felt a little better knowing he was alone..Let me tell you I'll never go back to Jax Beach hospital again,I got there at 11am and was finally saw by a Dr at 4pm.Granted they were running test,I wasn't given anything for the pain or nausea and my BP was high due to the pain and yes I did start getting a attitude I was is so much friggin pain,nothing like I had been through before.The nurse would come in ever so often and say is the headache better now and of course the answer was alway no "why do you give me something and than ask that stupid question" her reply was I have done everything I can do you have to be seen by the Dr and it shouldn't be much longer keep in mind we only have 1 on staff today..Finally after throwing up several times I finally got something for the nausea and than 30 minutes later I get seen by the dr that came in to relief the first Dr that was suppose have seen me..Right away she got me pain meds a small bag of phergen and dilauid and read all the results and said she was concern about the way the headache came on so she ordered a spinal tab,which she tried to do herself in the ER room that I was in and after the third try and no go,I was taken to radiology so they could do it and than had to lay flat for 4 hours after wards so i wouldn't get a spinal headache or have a spinal leakage.I had a total of 3 of the pain med IVs while there and than was discharged to follow up with nero Dr cause tehy don't know what caused it..(GO FIGURE,HUH?)So the next day I was on the phone all day back and forth with all my DR and of course they all are stumped by what is going on.I got the ok to go ahead with the second epadural, At that time the pain level was 5 so yesterday I went to the hospital to have it done so far everything was going ok than it took 4 attempts before they got an IV established and as I was walking into the OR and talking to the Dr,out of the blue it happened again out of no where,they had to help me on the table put me on oxygen and the dr asked if this is how it happen Wed and I replied with an ascurating yes the nurse asked me if I wanted to go through with the procedure at first I almost said no but I wanted relief.THe pain was off the chart once again 2 times in 2 days.They were trying to get me hooked up to the maching but with me moving alot due to the pain they went ahead and knocked me out and than hooked me up,I was told they has to restrapped
    my legs came out of the restraints.I woke up in recovery with an 8 on the pain scale and my BP was high(due to the pain I'm sure) I went in at 11am and should have been in and out no later than one,but was finally discharged at 4pm..Was told to cntact Dr if headache got like that again,mean while he called me in fiorcet to take between the methadone pills..I have no clue what is up with my Pharmacy I use,earlier this week they couldn't find my Zanaflex so the Dr office called it into another pharmacy.So when DH went to pick up the fiorcet(I called first to make sure it was ready) and I took one when he got home,I was half asleep when I took it..I woke up later to take another one and realized it wasn't fioricet it was zanaflex(now I have two bottles of muscle relaxzers and no in between pain meds)Back to the phone in the morning at least this time I was smart enough to ask the name of the person I was talking to)I woke up with a 6 headache and can't take another methodone for 3 more hours,have already tried the ice theraphy didn't help any...I had to cancel on a friend for this weekend,we were going to a bead show in Orlando(she makes her own jewelry)I thought it would be nice to get away but after having 2 acursating headache and not knowing when or if I'll have another one,plus I still have a headache and sore back from all the needles when the ER Dr tried to do the spinal tab before sending to radiology to have it done...I feel like a prisoner all I was to do it get out and do normal things again,I haven't been back to work since Monday but they know why,but I feel bad about not being there especially WED/Thurs they only had 1 cashier those nights since I wasn't able to be there.Maybe now thye will realize we need more than 4 cashiers overnight and not to give more than 1 person the same nights off..Well I know most of you are probably asleep by now by reading this,sorry I got carried away but this is the only place I know I can come and vent and people care..Take care and hope everyone is having a good weekend..Take care..Marianne
  2. 69mach1

    69mach1 New Member

    hi marianne,
    that was a rough couple of days, ihope the figure out what it was causing the problem, migraine? have those but doesn't sound like that so i wil remember you when i have another migraine and thank my lucky stars. take it easy and rest then maybe they can figure something out in the mean time. best wishes

  3. mtnfla

    mtnfla New Member

    I also suffer from migraines and hemiplegic migraines but this was far from what I go through with the migraines I have...I can usually tell if I have a migraine coming on adn this defenitely wasn't one of them..It baffles the heck out of my pain mgmt Dr yesterday to be having a perfect normal conversation and than wham out of no where I start screaming in pain and telling him here it comes again(of course there were a few cuss words muttered on my part) I was glad he sedating me right away,cause the more I try to explained the feelings I was having the more it hurt like HE**......Wishing you a good weekend..take care..
  4. How horrible for you. What else can they do about these headaches?
    I just was reading the post about the Buckeyes YUMMY! I make those at christmas all the time. Everyone loves them.

    I do hope those headaches go away and they find the cause of them.
  5. mtnfla

    mtnfla New Member

    LOL..I made myself hungry for some buckeyes,wish I felt better I would get in there and start making them..Hmmm maybe I can talk my son into making them with my help..(Doubt though) he just went to bed,he was up playing an online game with friends he met online..Maybe this afternnon if I feel better and shake this headache got about another hours before I can take my meds again..THANK GOD it not like the one had I had twicw already this week or I would be calling up the Dr..He told me yesterday after the epaduril not to hesitate to talk him if it comes on all of a sudden..It's a scary feeling,not one i would wish upon anyone.I'm almost scare to do anything,cause I don't get any type of warning that it is coming on.First time I was shopping,second was going into the OR and it was 2 days apart( about 50 hrs between them)I was suppose to go out of town today but he said not too just in case it happens again,he wants me to stay close to home..Well tahnks again,hope you have a nice weekend..take care..marianne
  6. smiffy79

    smiffy79 New Member

    my nuero reckons i am walking around w/migrains.
    i have constant h/aches sometimes they put me in bed and once in hospital.

    what you described is similar to what happened to me.

    couldnt see,tinitus was so loud i couldnt hear,no feeling in left arm,numbness and tingling in face mouth tongue,in coherant and didnt know where i was or even who i was!
    apparantly its called a 'thunder clap migraine' i also have a sight phenomonen which is caused by the migraines.
  7. mtnfla

    mtnfla New Member

    You hit it right on the head (sorta speaking)..That is the exact way it happen,out of the blue in less than 60 seconds..I'm been reading up on migraines,cluster headaches,rebound headaches but never hear of this thunderclap migraine..I already suffer from complex/complicated migraines and hemiplegic migraines and now it look as I can add this one to the list..How long have you been having this type of migraine?What type of test did you Dr do for you? I know so amny questions,I'm sorry I'm just scared and don't know what to do or think anymore..I see my Neurologist on the 16th and I will definetly ask him about this,he ok ed it for me go ahead to have my 2nd epidural (neck) done Friday..i guess i need to call him Monday and let him know it happened again just as i was going into the OR,maybe he'll see me sooner..In the ER they did a CT and Spinal Tap,blood work and say everything was ok maybe they should have done an MRI (even though I don't like them)..Thanks for what info you can share with me,cause this is really bothering me..Take care and hope you have a nice weekend..
  8. smiffy79

    smiffy79 New Member

    my nuero actually told me what it was but there is nothing i can do about it but to ride it out and try not to vomit :)

    for years i thought i had an anurism! andwas terrified.
    after the first one ~(i was only 16) the hospital wanted to keep me in and i wigged out big time and ended up discharging myself after being told it was anurism :(
    it doesnt happen that often to me anymore now as i know how to pace myself and know i am not being lazy so its looking up now.

    mum used to pile loads of guilt on to me,if i ever sat down she would yell "thats right sit on your fat f------- fan-y again (i was only a size 8) and i would do stuff like wash HER windows and vaccy polish wash up and so on :( life was miserable) it got to the stage where i rested at work i didnt work for me as she took 25% of what ever i earnt so she pushed me to do more and more hours :(
    with that amount of stress and was only 16 and still at school i never stopped moving or thinking and so would get really ill but have to keep going.

    now i look after me and so dont suffer as much but i dont really know that much about this form of migrain only thats what it was identified as,,sorry
  9. mtnfla

    mtnfla New Member

    I've been trying to do research on it,but not coming up with much except from what I learn from what you said..It hits the nail right on the head on how it happened..I'm kinda scared since it has happen twice in 1 week (2 days apart) and not knowing when it might happen again(hopefully it won't)but knowing my luck it will.THe last one was Friday just as I was going into the OR for the epidural in the neck procedure..They kept me awhile(about 1 1/2 hrs) in recovery due to the fact my B/P was up and when I left I still had a headache about 4 on the pain scale..The first procedure I had I was only in recovery for 20-30 minutes and had no headache when I left the first time..I still have the headache I left with but it just a dull achy feeling in the temporal area,but when I bend over to pick something up it starts to hurt in the top and across the front of my head(so I try not to been over much).I haven't driven my car since Wed morning,it is still at the Dad planning on going to get it today while out cloth shopping for my son he starts his job tomoorow and had to have certain color clothes and shoes(mechanic).He has been out of work since his car accident in 2002,he had part time job in between but he finding found a job he is good at he likes working on cars.He just brought himself a 93 Nissian 240 SX Convertiable (mint condition) and has a 84 Cadi with 59,000 original miles that he has put hydraulics on and a radio system with a gps and dvd player in it...I'm not sure about getting behind the wheel of the car,cause i don't know what might happen but I have to get my car back home so I'll have a way to get back and forth to work.I go back tomorrow to work and a bit nervous,last July I was life flighted from work due to a TIA and having stuff happen to me while out in public and rescue having to be called embarrassed me.I'm not sure why,but it does...Well guess I better get my butt in gear and get it over with,so i can get back home to my comfort zone..Hope you had a nice weekend,take care..marianne
  10. smiffy79

    smiffy79 New Member

    he probably just used a laymens term for it and not the proper medical term.

    i am sorry,maybe you could mention it to your nuero when you go?

    all the best,smiffy
  11. mtnfla

    mtnfla New Member

    Had another attack of the sudden headache again and my pain mgmt dr tells me if it happen after hours to go to the ER,so I did just that,that triage nurse was a *itch and a half.I was in extreme pain and she was telling me i had to calm down..what ever! she doesn't know how I was feeling,no possible way...THan made a smart azz comments to why are you here,you have a contract with pain mgmt that you will only get pain meds through them..Well thay are the ones who told me to come here is what I told her,my head was hurting so bad my was trying to hold it with my hands.She took my BP is was 206/98 oh that can't be right she said you have to sit still and not move so did it on other arm it was 220/102 and the alarm on the machine went off..Well got in a room,iv ,blood work, pain meds via IV and CT and than was told by Dr he couldn't give me any more narcotics since I was under the care of pain mgmt..He did say it was ok for him to give me ultram adn when i left the ER the pain was an 8 with regular sharp pain of 10..Was told it was a typical migraine..YEAH,RIGHT!!! I have migraines,complex/complicated and hemiplegic migraines and this was far from a typical one and the third one in a week..THey talked to the pain mgmt Dr on call and I was informed to go there today,but the dr called out sick go figure I see them tomorrow and the neuro Fr i(that was the soonest they could see me.
  12. Greenbean7

    Greenbean7 New Member

    I would like to read your posts but when they are all run together with no breaks I can't do it.

    Very interested in head ache posts because of my migraines.

    Please break up your posts into paragraphs so I can read them. A lot of us have this problem and usually when I see one like that I just move on. Then I miss a lot of information that could be of help to me, too.

  13. quigmoore

    quigmoore New Member

    I am new to the chat board and know little about CFS even though I've been diagnosed with it by two doctors. I have tried to live in denial of it for years, but all to my folly, as it doesn't get better.

    I suffered for 8-1/2 years with a chronic and severe migraine. I went to Virginia Mason Clinic in Seattle after battling with it for about a year. My doctor had tried everything he could think of to get rid of it. Discouraged by the gallon sized zip loc full of drugs that I gathered to take to Seattle, I hoped they would decrease my medications. Instead, they tripled them. To no avail. In a span of 8-1/2 years, I had at most, 3 weeks of intermittent days without the incapacitating headache.

    I was forced to quit my job. Anyway, after that duration of time, I experienced what I would call a miraculous healing after some friends prayed for me. I was in the middle of an escalated headache and they prayed and it left immediately. It was such a drastic change that I truly believed that I was healed.

    I never had a migraine problem for another 9 years. At which time I was forced into a work schedule that averaged around 16-19 hours per day. Additionally I was enduring an abusive marital relationship. Sometime after I was diagnosed with CFS, I had read that headaches were one of the symptoms of CFS. I often wondered if that was what started mine.

    Currently it is very touch and go. The stressors have been removed from my life, but there are so many triggers that I have to be careful of, e.g., light, smells, lack of sleep, etc.

    Has anyone endured migraines like this? After exhausting every medical avenue I could - I finally gave up. But once again, I'm thinking it would be wonderful if I could get some medication that could help. I have lost all confidence in doctors. When I was initially diagnosed with the migraines, it was during the period when they thought everything was psycosomatic.

    Thanks for your input.

    L Quigmoore

  14. mtnfla

    mtnfla New Member

    Sorry, you are right..I guess I wasn't thinking too clearly when I was posting,but after going back and looking at my posts I realized what you are saying..TY,again..

    I'm tired of hurting all the time and just wish there was a way none of had to endurn the attitudes of some of these health care proffesionals..It's not that I want to take more meds to feel better,I just want to find out what the cause of it is and make it better.

    There are people out there that truly need to be taken serious when they are in pain,but aren't taken seriously cause of the ones that are out there abusing the system to get high and it just makes it so darn hard for the ones that truly indeed need it...

    I have decided not to do the epidural injections anymore just in case that is what is triggering these sudden onset of headahes causing such intensed pain and sky rocketing my BP.(220/102 last might in ER)..

    Well going to try to lay back down for awhile and rest,I called out of work tonight.I'm just so tired and really not ready to face the stress of work tonight,hopefully tomorrow will be a better day..

    Thank you all for letting me vent..Take care and have a good night..
  15. mhammie

    mhammie New Member


    I'm very concerned about you, as to why they haven't done an MRI.

    My father-in-law 20+ yrs. ago had the same thing happen to him, as far as the high blood pressure and headaches. The 1st incident we lived in small town. Most people that still live there refer to the hospital as a bandaid station.

    Anyway his 2nd incident 1 week later, he had just gotten off a plane in New Jersey to visit with his sister. She could tell something wasn't right and took him to the ER right away. They admitted him right away, mainly because his blood pressure was high enough it should have killed him.

    Doctors did find an anuresym sp?. Because he had so much swelling on his brain where the anuresym was, they couldn't do surgery for a month. He was he the hospital flat on his back til after the surgery.

    I'm not trying to scare you. Sometimes I just don't think doctors look far and hard enough to find the answers. You may have to get the hospital patient advocate involved, if you think your not getting the care you need.

    Can you have someone go with you when these things happen. Someone who might speak on your behalf, if the doctors won't take you seriously.

    Please take care of yourself.
  16. mtnfla

    mtnfla New Member

    Finally got to see the Pain Mgmt doc today and he wrote me a RX for ACTIQ 800MCG LOZ,so when I got the RX it was in a ziplock bag not a pill bottle.Come to find out LOZ meant lozenger,they are about 3inches long and the diameter of a tampon.

    The instruction stated as soon as the serve headache starts to put the lozenger in your mouth between the cheek and lower gums and move it back and forth til it is dissolved and clearly states "do not crush,chew or swallow it" and if you have excess drowsiness or dizziness or slowed breathing before the lozenger is gone throw it away do not reuse it.

    I have a feeling this is going to taste nasty,(I pray it doesn't have a taste at all)but I guess if it work I won't be complaining about the taste..

    Just wanted to update you all on what going on,I'm off work til I'm seen by the neuro dr which will be Friday..Hope everyone is having a good day..take care.

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