Hiya .Is anybody on amitriptyline for... - Hughes Syndrome A...

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Hiya .Is anybody on amitriptyline for migraine.

Adinina80 profile image
19 Replies

Hiya I need some help with advice about the amitriptyline .they gave me for my migraine and I don't know what to do about it because I know this drug is an antidepressant. Thank you very much for your help.

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Adinina80 profile image
Adinina80
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HollyHeski profile image
HollyHeskiAdministrator

Many drugs are given for other reasons than what they are designed for, so just being an antidepressant shouldn't put you off.

I've read your previous posts and see you were trying to get an APS specialist - have you found one now?

I really think you need further anticoagulation, as this is the key to so many of our symptoms.

Wittycjt profile image
Wittycjt

I was on it a very long time ago, they said it had a side effect if being a vasodilator so it would help with my headaches at that time. I know amy1808 takes it and it seemed to help her immensely, hopefully she will respond. All the best, Cindy

lupus-support1 profile image
lupus-support1Administrator

Amitripyline is an older tricyclic antidepressant. It is not usually used for depression because of newer drugs. Taken at low doses, it is a muscle relaxant, gives a restful sleep and is used in a variety of medical conditions other than depression.

I take amitriptyline, if that is of any help.

With good wishes,

Ros

TaraRae profile image
TaraRae

Hi,

I have suffered with severe and dibilitating migraines since 5 years old. I'm not sure if your Dr is treating you for typical migraines as the meds given for migraines are vasoconstritors. I've known this for years and if I forget my RX migraine meds, feel one coming on I try to shove as much caffeine as possible into my body. Therefore, I am confused.

Yes, I am on Elavil/amytriptaline at night as I have severe jerking of my muscles (myoclonus). As Elavil made me feel drug hangover my Neurologist started me on 25mg at bed time and I am only able to tolerate no more than what I am currently on, 50mg. As aforementioned, I'm curious why your Dr used that drug. Yes, like all of the comments prior to mine this drug has numerous not targeted for patients on it for a host of problems other than depression. Elavil has done wonders for my myoclonus bur idk why it would be RX'ed for the prevention of migraines??? Ask your pharmacist and Dr what the benefits from taking Elavil. As I'm 54, had true definition of migraines, I have been on too many drugs to list. Thank God that someone figured out Imitrex and other vasoconstritors to help with migraines. After menopause I stopped having migraines. That was awesome!!! As I continue to decline in health good Ole friend migraines are back again. Do you get them often? I'm curious to find out if they are working for you. Never feel bad about asking a lot of questions. I hope Elavil helps your migraines, I just don't understand why your Dr chose that drug? Hope this helps you?! Take care,

Tara

Wittycjt profile image
Wittycjt

Adinina80 are you still with us?

Adinina80 profile image
Adinina80

Hiya I am still with you.i was the all day in a dark room and sleeping with my migraine. I have migraine all day every day for the last 10 years. Took me this long for somebody to listen and send me to a specialist. She gave me this medication because she didn't know what else he can give me because she is not a head specialist and refer me to st Thomas hospital. I am scared to take this medicine because I am trying for baby and on the leaflet says is not indicated.

TaraRae profile image
TaraRae in reply toAdinina80

Yes, try the vasoconstritors like Imitrex, Maxalt, ect. Imitrex has side effects I don't like. Maxalt is amazing. If u walked into an ER I promise you they would give you a shot of Imitrex or some other vasoconstrictor. In this world of 100% manageable migraines there is no need for you to suffer like this. My primary care Dr prescribes this drug for me. Like you, Elavil did not help migraines. The meds aimed at JUST FOR MIGRAINES are the ONLY drugs that really help. Go to an urgent care if you can't get to an ER, these migraine meds aren't controlled substances and are ONLY TAKEN WHEN YOU HAVE A MIGRAINE!!! Please consider this as an option. I feel and share your pain. Please stop suffering and get some real help. Let us know how it goes. We care!

Tara

MaryF profile image
MaryFAdministrator

Hello, as mentioned clearly by lupus-support1 this drug has a use for many conditions, and also appears to help quite a few on here. I hope it makes a difference to you. MaryF

Tofino5 profile image
Tofino5

Amitriptyline is often one of the first drugs trialed for migraine prevention. I was on it for awhile but it made me super sleepy, and didn’t touch the migraines.

It may help you, I know there are some people it does help.

TJD2017 profile image
TJD2017

Hi there. I am also taking amitriptyline, at a really low dose of 20 mg evening only. Though at higher dosages it has been used to treat depression, it is also used for migraine prevention in lower dosages. I have been using it since April and it has been effective for me. I take Cambia if a migrain does slip through and hit and that has worked for me so far, but I have had few migraines since switching to amitriptyline. . I am quite sensitive to many drugs and used to take Topirimate for migraine prevention and though it worked wonders for that, I was one of the folks who experienced a number of unpleasant side effects so they switched me to amitriptyline and I still take low dose Aspirin daily. It does make you groggy ( for me about an hour after taking) so my neurologist has me take it evenings only. In my case, it also seems to tamp the twitching nerve pulses and pains I would get in my arms and legs so it has been a positive change for me.

I wish you luck in your venture. Each person is different so you and your doc may need to experiment with a few different drugs and dosage levels to find what works for you.

Kind regards,

Tamara

Adinina80 profile image
Adinina80 in reply toTJD2017

Hiya thank you very much for your response I will see what would happen after I am starting the drug .

Tinythepanda profile image
Tinythepanda

Hi,

I take 20mg of this a night. I was actually put on it initially for my herniated disc to help with the pain. As it turned out it lowered the amount of migraines I was having and the severity. Up to that point I had daily headache and migraines every other day with terrible auras.

My migraines then stopped all together when I was put on blood pressure medication. I now very rarely have a headache and have been 6 months migraines free.

I take them an hour before bed and did feel a bit woozy for the 1st week but everything soon settled.

Adinina80 profile image
Adinina80

Thank you very much for your response I am gonna start mine in 2 weeks time because I just started another med for my Reynolds syndrome and I need to leave a distance between for side effects to show for individual med.

amy1808 profile image
amy1808

Hi , it’s not an antidepressant if taken in high amounts. I take it for hemiplegic migraine and it is a little pill sent from heaven. It’s changed my life . Don’t get me wrong I do have flares but I’m so much better . I knocks you out so take it early in the evening otherwise you will wake up like a zombie. X

Adinina80 profile image
Adinina80 in reply toamy1808

Okay thank you very much. I fear is more about the side affect of being tired because I am already suffering of really bad fatigue and I have a really busy evening .I don't go to bed till 10 or 10:30 pm and I have to be up at 5 am the next day.i can't afford to be zombie. I work as a teacher long distance from home.thank you for your help.

KellyInTexas profile image
KellyInTexasAdministrator

I’m sorry if I’m asking a redundant question:

1. I assume you are properly anti-coagulated, and that you are indeed anticoagulated?

2. Who is your Hematologist?/ Rheumatoligist?

3. Who is managing your INR if on warfarin ?

4. I get migraines unless I’m at about 4.3 -4.5 by vein.

5. Please consider looking at histimine intolerance. Google low histimine diet. Many APS patients have a very strong adverse reaction to histimines. I did not have this problem until my mid 40’s, and APS ramped up very aggressively. It can help avoid these migraines many APS patients.

Migraines may be multi factorial, and needs to be addressed as such- but always with the thinness of the blood being paramount for safety’s sake.

Adinina80 profile image
Adinina80

Hiya

1.I am not an anticoagulant at all .I am on antipalet (clopidogrel)

2.my hematologist is Mrs Robinson from st Thomas hospital and I am waiting for my appointment with the rheumatologist from st Thomas hospital

3.I am fade up of the pain and nobody listens,but I am hopping I Will find somebody to listen soon.

4.I do not take antihistamine at all .

Thank you very much for your help.

KellyInTexas profile image
KellyInTexasAdministrator in reply toAdinina80

Try adding dye free Benadryl ( antihistamine) when you get a headache. Because the Amitriptyline you mention causes drowsiness, I’m reluctant to recommend this. You should check with your doctor first, of course. Benadryl will really cause drowsiness so be very careful.

Some APS patients are prescribed montelucast daily . There are some hematologists who are aware of its value. It has to do with certain mast cells. ( dr Lawrence Afrin in NYC , Hematologist, writer a book - Never Bet Against Occam- he actually told me mast cell activation syndrome can activate the clotting cascade. Heparin is produced in one type of mast cell. Heparin can become disregated . He said that it can even trigger the APS antibodies. I say I believe it’s still poorly understood, at least by me!

I think it’s very possible you are undercoagulated.

If you have not already done so, please look at Professor Hughes’ November Blog. It deals with better advancers in testing for sero negative test kits/ detection. ( small paragraph within article.) perhaps you can print out and take to next appointment? ghic.world

I assume ( always risky) that you are sero negative , at least from time to time or you would be on more than an anti platelet.

teadonna profile image
teadonna

I was started on Amitriptyline for migraines, I have bee on 100mg at night for the last 19 years. Its is used as an antidepressant but it is also used in migraines to help the etc. I was put on this by the Neurologist I am under. Because I have hemiplegic migraines. I still see the consultant and he has not send to come off them when I have had a medication review.

teadonna

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