Are medications causing some of your problems?

Discussion in 'Fibromyalgia Main Forum' started by Mike, Dec 20, 2002.

  1. Mike

    Mike New Member

    I'm beginning to believe that some medications can cause permanent damage for suffers of CFS or FMS. Also there is a possibility that the main problem may be a malfunctioning Basic Brain Barrier (the barrier in the brain that keeps undesired elements such as heavy metals, chemicals, fats, etc. from entering the brain as well as keeping brain chemicals such as seratonin, dophamine, etc. from entering the blood in the rest of your body). If the barrier to the brain is malfunctioning, permanent or sometimes temporary brain problems can occur and if the barrier from the brain is malfunctioning, damage can be done to organs in the rest of the body. In my case, I believe that I may have a problem with the barrier entering the brain.

    I think most of us have all experienced what I believe are temporary problems with the Basic Brain Barrier. I can think of many temporary problems such as headaches caused by medications but these do not necessarily indicate a Basic Brain Barrier problem. However it could be possible that the medication that you are taking produces chemicals in the blood of which some should enter the brain and others should not. If the chemicals that should not enter the brain do enter the brain, it is possible that headaches will occur.

    However I can think of at least three temporary problems that I have experienced that may point to a Brain Barrier problem. The first is the way Amitriptyline works. A healthy person will take 25 mg before going to bed and wake up refreshed in the morning while most of us will have the dreaded hangover for about 24 hours. One possible cause could be that some chemical that the drug produces that is not supposed to enter the brain does enter the brain and get trapped there for the 24 hour period.

    A second and more convincing temporary problem occurred during my first year of CFS when the symptoms were the most severe and I believe the Basic Brain Barrier was functioning very poorly. This problem no longer occurs and in fact will not have any effect on me so I'm assuming that the Basic Barin Barrier is now functioning some what better but is still not functioning 100% correctly. My doctor prescribed Promethazine 100 mg (an antihistamine) for sleep. When I took the drug, I immediately fell asleep and woke up 8 hours later. I said fianlly I found a drug that helps. However after being awake 1 hour, I fell back to sleep for 8 hours. Again, I woke up for 1 hour and fell back to sleep for 8 hours, This cycle continued for 36 hours and I was finally back to my normal fatigued self. Since the drug is supposed to be purged from my system in no more than 12 hours, one explaination is that some chemical that the drug produces got into my brain that was not supposed to get there.

    The final drug that caused temporary problems was ProAmatine. I was taking this drug to treat Neurally Mediated Hypotension which we thought may be causing the fatigue (information was sketchy as to why you would treat Neurally Mediated Hypotension). I now believe you should treat Neurally Mediated Hypotension only if you had either normal or below normal blood pressure and you are having dizzy spells (my blood pressure was high normal and I never experienced dizzy spells). So it appears that it was a mistake to try to treat the Neurally Mediated Hypotension in my case since any drug that treats this problem will cause your blood pressure to rise and mine was already high normal. Anyway, the drug caused severe nausea every morning for about 2 hours. After about a week, I quit taking the drug but for the next three weeks, I experienced severe nausea for 2 hours each morning. Again, why would the drug cause problems for 3 weeks after I quit taking it since it should be purged from your system in no more than 2 days. Did some chemical get caught in my brain for the three weeks?

    Now to the real problem. Can permanent dammage be caused by the drugs that you take? In my case, I can point to three instances where I believe that the drugs I took caused permanent dammage. I was lucky in that all symptoms other than fatigue and intolerance to drugs disappeared within the first year. So over the past 2 1/2 years, it was fairly easy for me to determine whether a drug caused side effects such as headaches, nausea, joint pains, etc. since I was not already experiencing any of those symptoms.

    All of the drugs that I took that I think caused permanent damage were drugs that regulated blood pressure. The first drug that I believe caused permanent damage was ProAmatine (the drug that I was taking for Neurally Mediated Hypotension). Two weeks after I quit taking the drug, my blood pressure shot up to stage 1 and remained there. Although this may be a coincidence, later experiences lead me to believe that this drug may have caused the problem.

    The second problem occurred when I took Toprol (a beta blocker to reduce high blood pressure). Prior to taking this drug, I was using Amitriptyline - Elavil to control my fatigue. Although Amitriptyline was not a perfect solution, I would take it for 2-3 weeks and remain in fatigue and as soon as I quit taking it I would pop out of fatigue for about 2 weeks. I had been using Amitriptyline for the previous year and it worked like clockwork. Anyway, I took Toprol for two days but it immediately dropped me into severe fatigue where I would have to nap 4-5 times a day and the previous week I didn't nap at all. After I quit taking Toprol, the Amitriptyline never worked again to control the fatigue.

    The third problem occurred when I took Hydrochlorothiazide(a diuretic to reduce high blood pressure). I only took it for two days since it caused flu like symptoms. I took my blood presure the day before I took the drug and it indicated stage 1. I also took the blood pressure that evening when I took the drug and it was up to stage 4. I kept monitoring my blood pressure over the next several days and it was always at stage 4. Two days after I quit taking the drug, I took my blood presure every hour during the day and it was always stage 4. In just one day, my blood pressure had shot up approximately 25/12. I am still fighting this high blood pressure problem.

    When I've talked to my doctors about these problems, they don't seem to believe that the drugs could cause such problems. They indicate that since the medications would long ago have left my blood, they couldn't have any effect on me. However if the Basic Brain Barrier was malfunctioning, the blood in my brain could contain chemicals (which cannot be tested) where as the blood in the rest of my body would indicate normal.

    Has anyone else experienced similar problems? I would think that some of you would not know if a drug causes headaches, joint pains, or nausea since you may already be experiencing those problems prior to taking a new drug.

    Mike


    [This Message was Edited on 12/21/2002]
  2. amilyne

    amilyne New Member

    hi mike , im not sure if you wrote the right drug there..Fluoxetine is Prozac or aka Serafem(?spelling) which is an SSRI or selective serotonin reuptake inhibitor , drugs of this class are anti-depressents and also work in other conditions,such as anxiety and other mood disorders and other condition as determined by your physician...im not being rude maybe you wrote the wrong drug name there which is understandable....also all drugs have side effects and all people react differently and all have different side effects;for me amytriptyline is awful and other people swear by it, i also know that people with cfs and fm are more sensitive to alot of medications...also after taking drugs for some time a person may not get the same effect as they have previously,and it is true that it may take several weeks for certain drugs to completely exit your system,and also when a person takes more than ane drug there are many drugs that containdicate eachother, they may not neccesarily be harmful but they may not work as they would when taken alone,also regular everyday things such as grapefruit juice can interact with some medications...dont get me wrong im not saying that this may not be true but everyone is different...i hope that i didnt offend you and as always thanks for information,all info is useful and interesting.
    ---ami
  3. Mike

    Mike New Member

    My mistake. It's Hydrochlorothiazide. I have too many bottles in my cabinet. I appreciate your reply. I know that everyone reacts differently to drugs and I wouldn't expect that anyone else would react to the drugs that I reacted to the same way. Primarily what I was trying to bring out was the permanent changes that drugs have (I expect that everyone reacts differently to different drugs). As an example, Amitriptyline which was once my miracle drug is now a terrible drug (I no longer use it at all) and Topril appears to have permanently changed the way it reacts.

    Also, I've been lucky in that I am usually only on one drug at a time and never more then two.

    Thanks again for your reply

    Mike
  4. missvickielynn

    missvickielynn New Member

    Mike, I think there could well be some logic in your theory that applies specifically to those of us with these "strange" classes of illnesses. While I have not had the experiences you have had with blood pressure meds, I have had similar experiences with other drugs and combinations of drugs, including Elavil and Flexeril. Even though I am having increasing problems controlling my blood pressure, I have not agreed to take any blood pressure meds.....yet. I hope I don't ever have to! I wish I could find a way to never have to take another drug of any kind!

    I just recently read something somewhere on the net about malfunctions in the blood-brain barrier......but I cannot remember where. However, since nearly all of the email newsletters I receive are CFS-related.......makes me want to do some more research. That will have to wait for another day, though.....I am finally getting sleepy after a night of not being able to sleep. Not sure how much of it is my attempts to reduce my Klonopin dosage by teenie tiny increments, and how much of it is the lingering effects of the full moon......but I have been wired all day yesterday, and all night!

    Interesting post, Mike!

    Vickie
    [This Message was Edited on 12/21/2002]
  5. amilyne

    amilyne New Member

    hey mike , thats cool , i know what you mean about meds making a difference, i suffer from chronic headaches as well and in the beginning i started taking amitryptyline for them and started out at 10 mgs and then went up to 50 and at that time i started to get bad side effects and hated it and stopped taking it but i figured that it didnt matter because the headaches went away and then a few years later i started taking paxil for really bad pms and low and behold the headaches came back full force and i havnt been able to get rid of them since also i had been working out at the gym alot before that and the paxil made me so calm and relaxed that i had no energy and i just got too fatigued to the point that i stopped working out and my cfs kicked in even stronger and ive never been able to get back to that point ever since( at this time i didnt know that i had cfs and fms) ;( and my doc now wanted me to start taking that horrid drug again for my sleep and i told him that i didnt want to and he insisted but i still didnt take it and because from my previous experience i knew that it wouldnt do anything for my sleep because it didnt before..i think that doctors think that they know everything..arghhh..maybe they shoud be called dictators instead of doctors ..lol anyhow nice chatting...byeee
    --ami
  6. Spoonerpaws

    Spoonerpaws New Member

    I think you could possibly have a point!

    I was taking Amitriptyline and was just EXTREMELY tired all the time and gained 20 lbs - (it did help with sleep, but what good is the sleep if you still wake up tired?)

    I now take Klonopin (.25 mg) for sleep and that is the only drug besides Allegra that I am taking - BUT

    I often wonder if I am getting more harm than good from the Klonopin - It does help me sleep, but I am still tired all day and especially about 7 in the evening.

    The fatigue problems started to get severe a year ago when then put me on Ativan (NO LONGER TAKING AND WOULD NOT RECOMMEND TO ANYONE)
  7. klutzo

    klutzo New Member

    I'm sorry you had so much trouble with Promethaizine aka Phenergan. I take it when I have bad headaches and get some much needed sleep. I love it.
    I think you may be on to something about the BP drugs. I was going to a cutting-edge Neurologist who treated FMS with nitroglycerin to open up blood vessels and get oxygen into all the muscles and brain tissue. It gave me awful headaches so I quit, but immediately upon stopping it, I developed stage 1 high BP. This could well have been a rebound reaction. However, I was at the right age to develop high BP, and all my relatives have it, so I can't prove anything. Now, 7 yrs. later, I'm in stage 1 even with medicine, and have to keep raising the dose. Bummer.
    If you find any more info about breakdown of the blood-brain barrier, please post it. It's interesting, and a topic we've not seen before.
    Thanks,
    Klutzo
  8. 1maqt

    1maqt New Member

    MIKIE,
    THIS IS 1MAQT. IN MAY I HAD A MAJOR SURGERY(5 IN 1) WITH THREE SPECIALIST. JUST A FEW WEEKS AGO I HAD A LYMPH NODE/ INLARGED SALAVARY GLAND REMOVED, BOTH UNDER ANESTHESIA. AT
    EACH SURGERY THEY DID AN EKG, WHICH BOTH WERE ABNORMAL.DUE TO MY WEAKENED CONDITION, THEY GAVE ME A STRESS TEST WITH INJECTION TO SPEED UP MY HEART, ONE TO BRING IT DOWN //WAIT 2HRS //THEN INJECTION OF RADIOACTIVE ISOTOPES TO TAKE PICTURES. HAVE BEEN SICK SINCE.
    ONE OF THE WORSE FLARE UPS IN A LONG TIME.MOST SEVERE PAIN AND INFLAMATIOM. THE POINT BEING, I GET THE SICKEST AFTER CHEMICALS HAVE BEEN INTRODUCED INTO MY BODY. I THOUGHT I WAS MAKING TOO MUCH OF IT, ESPECIALLY AFTER THE FLU SHOT THING. WHEN I SAW THE DR TO SET UP THE APPMT FOR THE STRESS TEST, I WAS RUNNING A TEMP. SHE SAID IT WAS PROBABLY BECAUSE OF THE SWELLING AND FLUID AROUND
    LYMPH NODE SURGERY THAT THE WOUND WAS INFECTED, WELL IT DID
    SWELL UP!! THEY DID HAVE TO OPEN IT UP AND DRAIN IT. THEY ASLO PUT ME BACK ON ANTIBIOTICS "AGAIN" .
    NOW MY FEET ARE BLISTERING AND PEELING, ETC, FROM UPSET OF ECO IN BODY.THE DOR'S MAKE IT LOOK LIKE YOU ARE A LITTLE
    BIT MORE THAN LEFT OF RIGHT, AND DISMISS YOU LIKE A CHILD WHO IS WHINNING FOR A COOKIE. I FEEL SO INSULTED. KNOWING I AM A 58 YEAR OLD WOMAN WHO HAS 6SUCCESSFUL CHILDREN(THAT DOESN'T TAKE KNOWLEDGE?)WE KNOW WHAT WE KNOW, WHAT WE KNOW.
    FRUSTRATION CITY....NOT BECAUSE OF ME, BUT THE GLAZED OVER FACES OF DOCTORS WHO DON'T KNOW WHAT TO DO.i HAVE TOLD EVERY DOCTOR I HAVE EVER SEEN THAT I HAVE A HIGH SENSITIVITY
    TO MEDICATIONS. THEY KEEP WRITING PRESCRIPTIONS, I KEEP NOT TAKING THE ONES I DON'T HAVE TO
    MOST SAY IT IS MY WEIGHT THAT IS THE PROBLEM. 260LBS/
    5'4"TALL. WELL DUH....WE ARE RETIRED LIVING ON DISABILITY.
    I WOULD LOVE TO GO TO THE WMCA. MY HUSBAND HAD A VERY GOOD JOB FOR 37 YEARS,WE LIVED WITH NO INCOME FOR 2 YRS!!STRESS?
    WE LIVE WELL WE HAVE ALL WE NEED. WE HAVE OUR FAITH, RICHLY SO, AND THE LORD IS MOST GRACIOUSLY GOOD TO US, BUT THERE ARE SOME THINGS WE JUST CAN NOT DO.THAT IS JUST SMART.
    WE GIVE TO OTHERS, WE TRY TO SET AN EXAMPLE OF WHAT JESUS REALLY WAS," HE WENT ABOUT DOING GOOD" THAT IS WHAT PETER SAID.WE HAVE A TREADMILL, EXERCISR BIKE,FAT LOT OF GOOD THEY DO ME.SO WHAT DO I TELL MY DR ON JAN 2ND WHEN I SEE HER AGAIN, AND SHE IS GOING TO GET ME SOME PHYSICAL THERAPY THROUGH OUR INSURANCE(IT IS 80%/20%) SO I HAVE TO MAKE THIS GOOD. FEED BACK PLEASE???
    FOREVER GREATFUL, AND HUMBLEY APOLOGISE FOR THE SOAP BOX
    YOU GOTTA WATCH OLDER PEOPLE, THEY TEND TO RAMBLE ON.....
    GOD LOVES US 1MAQT
  9. teach6

    teach6 New Member

    You mentioned that you have NMH, but didn't think you needed to be treated for it because your BP was borderline high. Then when it shot up after Proamatine you were put on Toprol which made your fatigue really bad. I believe that was your NMH talking to you loud and clear!

    I also have NMH. My doc's first choice to treat it was Toprol, but it turned out my BP was too low to handle it alone. I could hardly breathe after a few days on it, which can go along with NMH. So he put me on Proamatine to bring my BP up, along with Florinef and then added in Toprol. All this was done in tiny doses, like quarters of pills, increasing in similar increments.

    Before I began this drug therapy I was basically bedridden. Now, a year later I can stand for short periods of time, sit for most of the day, as long as my hips are higher than my feet, and function much more like a human being.

    What happened to you with the Toprol is exactly what happened to me when I started on it without the other drugs. Did your doc start you with small doses? Increase them in the same tiny doses? Just wondering. Sometimes things are not what they seem at first look.

    I've done a lot of research on this and so has my doc, so I trust him on this one.

    Barbara
  10. Mikie

    Mikie Moderator

    This is Mikie and just to keep everyone from confusion, this thread belongs to Mike. I think Mike is a he and I am a she :)

    Love, Mikie