FM Venting Migraines and Weight gain on meds

Discussion in 'Fibromyalgia Main Forum' started by Redwillow, Dec 12, 2006.

  1. Redwillow

    Redwillow New Member

    Yesterday was my yearly visit with my rheumatologist. I always arrive with a list of all my questions and concerns and give her a copy.

    My big issue this time was about the medication amitriptyline that I am on. I have been on it for over a year, having to increase my dosage once as well. I have gained a lot of weight with this medication. Also I am dealing with excessive sweating when I do any activity, even changing my clothes.

    I explained to her that this extra weight was really bothering me, and the sweating was terrible.

    She said the extra weight, sweating, dry mouth were all symptoms of the Amitriptyline that I am on.

    She said that the medication is working for me as I am sleeping and my migraines are being controlled.

    Unfortunately I also have ALL the side effects. If I stop taking this medication I have have to deal with no sleep and migraines again and I know I can't go back to that.

    She said that there was really nothing that she could do different for me. She said that amitriptyline doesn't work for a lot of people but that it was obviously working for me and there was nothing else she could put me on that would be a better alternative.

    She also said that it sounds like I am depressed because I explained that I find it difficult being around people and noise because it exhausts me. She suggested I talk to my GP about going on an anti depressant. I tried paxil one time and that also put weight on me I haven't been able to get off.

    As you can imagine once I got to the car and tried to explain what she said to my husband I started crying. I have gone up 2 full dress sizes since I started this medication. I am now in plus size clothes.

    My husband says that he can deal with it if I have to stay this size but is concerned that my life is already very limited at age 47 and that the weight is making me even more limited at doing what I enjoy.

    Do I just try and look at this as something I have to take and that like someone who has diabetes you have to take your meds because that is what your body needs and just deal with the consequences?

    I guess compared to many here I should be glad that I am able to sleep most nights with this med to help and I am certainly glad to have the migraines controlled.

    It just seems to me that I have gained in one area and also lost big time. With this weight and the way I break out in a full body sweat from any effort I feel like I have just traded some symptoms for other miserable symptoms.

    Thanks for listening friends. I really needed to vent.

    hugs Redwillow

    [This Message was Edited on 12/12/2006]
    [This Message was Edited on 12/13/2006]
  2. elliespad

    elliespad Member

    I'm not telling you to do this, but this is what I did. I had been on Doxepin 125 mg (also a Trycyclic) for many years, to help with sleep. Which it did. It also helped me gain a LOT of weight, like 100 lbs. I was on about 14 drugs total, for various problems, symptoms.

    I reached a point where I decided I was doing too much damage to my liver and made it my JOB to get off as many drugs as possible. I was seeing a doctor in California (actually had all my visits by phone) and he did VERY THOROUGH testing. He is an M.D., a Neurologist and Psychiatrist. He treats mostly with supplements, but does use drugs, if necessary. He did a LOT for me. But, the SINGLE best thing he did, was put me on L-Tryptophan. This is an amino acid which your body uses to make Serotonin. I was put on 1500 mg. along with P5P (Activated Vit B-6) and I took this with my usual dose of Doxepin. I took numerous other supplements, as well.

    I gradually weaned myself down on the Doxepin until I was only taking 10 mg. and stayed on that for several more years, thinking it helped a tinge more than going without any. About a month or two ago I decided, no more. I'm done. Just stopped. I am now Doxepin free and glad for it.
    Out of all the drugs I was on, the only one I still take is Tenormin (Beta Blocker) and as soon as I figure out a way to achieve with a supplement, that Tenormin does, the Tenormin is history too. I MAY be able to achieve this using the amino acid L-Theanine. I generlaly do these on my own, but I recommend others consult with a KNOWLEDGABLE doctor, preferably a Naturopath or Integrated Medicine Doctor. They are well versed in the use of many forms of medicine, not just "Western" medicine which is drug based.

    I lost about 6 lbs with no effort. Hopefully it's not a fluke and will continue.

    [This Message was Edited on 12/12/2006]
  3. naturebaby

    naturebaby New Member

    Hi redwillow,
    Another Ontarian the picture in your profile, looks like where I live!

    I was on amitriptylene briefly last year. I gained nearly 20 pounds in just a couple of months. It was awful, and I'm still trying to lose the last 10 pounds a full year later. Although it did help a LITTLE bit with sleep for me, the benefits were not worth the health risk of the rapid weight gain.

    Amitriptylene is an older antidepressent that is closely related to the muscle relaxant Flexeril (or so I am told by my doctor and pharmacist). One of my medical friends calls it a "dirty" drug, in reference to the unwanted side effects.

    There are so many other options out there...I think your rheumy is being unreasonable. Is he/she your primary doctor for the fibro? Is there any reason you can't talk to your family doctor about a better, newer medication option? If not, I'd try to get back in for a 15 minute appointment and tell your rheumy that you do not want to take the amitriptylene anymore (and yes, you can cite the health risks of your weight gain).

    It took me AGES to find the right combination and types of medication that work best for me, but eventually I did find a good balance, thanks to my former GP who was open-minded and willing to look for solutions for me. (Sadly, I've moved away and now am dealing with a much less understanding doctor.) Don't give up or "settle" for a treatment option that is not working for you!

    Keep us posted, okay? Wishing you well, nature
  4. PVLady

    PVLady New Member

    I promise you, there are better doctors out there. I would go back to square one, find a new Rheumatologist. If you like that doctor, have the records transferred.

    Everything is trial and error... this doctor is just not willing to take the time with you.

    If you see three new doctors, keep looking until you find someone better - they exist.

    Its true, all drugs have some side effects but you are unhappy about the weight gain also. That is not healthy for you either.

    It sounds like you wasted your time. Also, if you are on a prescription you should see the doctor every 3 months, not just once a year.

    You need a better doctor and you deserve it.
  5. MelaC

    MelaC New Member

    Hi Marion sorry your visit with the rheumy didn't go well. I often wish they could just have what we have for a few hours so they could be a little more compassionate.

    I can understand your distress at putting on weight.I have exactly the same problem and it is really not something that we can just sit down and accept. Sure hubby doesn't mind it but realistically it is not healthy and we don't need any other health problems.

    I don't know what amitriptyline is but I am on Trepaline which is for my CFS and also helps with depression and pain control it also helps me sleep. I have been on it for years and it works for me. It is what was used for depression many years ago and they found it also helped in other areas especially CFS.

    For my migraines the neurologist put me on Epilum which is actually an epileptic treatment and it has worked very well as well this has not only controlled my migraines but also helps me sleep.

    Sometimes I cant help but feel the treatment is worse than the illness.

    Personally I think if you are not happy with the rheumy or question the treatment she has you on go and get a second opinion. After all it is YOUR life and you have to live it.

    Hope you feel better real soon.
    Hugs Mela

  6. Redwillow

    Redwillow New Member

    Hi Everyone

    Thanks for the support. I am thinking of talking to my pharmasist in the New Year and see what he can suggest. I am totally discouraged about doctors.

    In my rural area of Ontario there is a huge doctor shortage. There are thousands of people who don't even have a family doctor so there is no way you can change doctors. I wish I had the option of changing doctors but it just isn't going to happen.

    My GP refers to FM as a basket diagnosis, he will only discuss sleep, pain and migraine issues, every other symptom about FM he ignores or says that is depression.

    He is the one who put me on amitriptyline. When we talk about weight gain he tells me to increase my activity levels. So I just don't think he gets it!

    The rheumatologist I see is a 2 hour drive for me. She seems very sympathetic and is easy to talk to but will only make recommendations to my GP as it is too far away for me to go to her regularly.

    In this case she says that the amitriptyline is managing my migraines and my sleep so .... she doesn't think there is anything else out there for me.

    I feel like I am boxed into a corner. Continue gaining weight, I am already wear a size 2X and started out on my FM adventure at a size 14-16 or go back to no sleep and daily migraines!

    I have been told that having a lot of migraines is bad for your health too so I feel like I can't win.

    Maybe the pharmacist will have a suggestion.

    Anyway thanks everyone for allowing me to complain. I never feel very comfortable doing that.

    hugs Redwillow
  7. Fudge43

    Fudge43 New Member

    Marion .. I haven't heard from you lately .. and I didn't want to pester you, so I haven't been e-mailing ..

    I can see you are in distress with the medication .. I am on amitriptyline and have been right from the start .. I am one of the lucky ones too .. it works for pain control more than I ever knew when I went to the "other" rheumatologist Brouillard (I would not recommend him) ... he cut me right back to 25 mgs in 3 weeks and I suffered so much it was unbelievable .. pain was screeching at me.
    So .. back to my GP and back on a 75mg dose and it helped so much once again .

    We are at a disadvantage here with few doctors and few choices for rhuemys .. I was going to see yours but we haven't heard a peep out of her office .. my GP was not impressed by her from other patients opinions ... and now I think I won't bother either .. my big concern is that I'm getting worse .. the weather plays havoc on pain levels but I guess I have to roll with the punches.

    I do have neuropathic pain .. I am not diabetic .. but this pain can happen to us with the fibro (going back to the cause of our nervous systems being out of control) .. I am on Lyrica now for that and it does help !
    I also take L-Tryptophan and that might be the key as to why I haven't gained a lot more weight (10 pounds .. but I had an extra 20 that I should have lost before that was added)
    I do have cravings for sweets ... but I have ALWAYS been like that .. so it wasn't a huge deal for me.
    I sweat like you do as well .. and it makes me crazy .. but I have a few good days in the cycle that keeps me sane.

    The next thing I'm going to suggest is that you are going into menopause and your symptoms do get worse .. they mimic the meds .. weight gain .. mood swings .. depression .. irritability beyond belief ..
    I am on a low dose birth control .. Min-Ovral .. and it does help ..
    Maybe you should bring that up with your GP and see if it might help you too ?

    I'm sorry you are so discouraged .. I have been too actually .. for the last 4 months I have been sick with either a cold or the flu ..I have a head cold from hell right now and I'm so SICK of being sick it is making me crazy ..
    The other point is thyroid .. before I forget to mention that (fibro-fog) .. it also causes havoc with weight gain .. I had Hashimoto's and went right into hypothyroidism .. with the internal goiter .. also drives me MAD .. I actually should be completely INSANE by now ! haha .. check that out with your doctor too though .. it could be a factor.

    I really hope you find some relief with it all. Hang in there .. believe it or not, better days do happen .. i know you are rather isolated out there .. if it helps, drop an e-mail my way and maybe I can suggest more things to help you ?

    Take care !
    Joy : )
  8. Gly

    Gly New Member

    Sorry to hear about your problems with the amitriptyline. I also experienced steady weight gain in spite of eating less (I counted calories before and during due to life-long weight-gaining tendencies, so I know for sure) and upping my exercise. Yes, the Elavil helped with sleep and pain control but the weight gain was unacceptable to me. My doctor switched me to Trazodone. It's not quite as effective but I only had some water weight gain on it. If I go off it, I lose about 3 pounds of water.
  9. Redwillow

    Redwillow New Member

    Aw hugs back my friend. The Canadian doctor shortage is really screwed up!

    Thanks for the sympathy and the hugs everyone. I surely needed them.

    hugs redwillow

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