15 replies to this topic

[Hol]

Hi Everyone,

This is my first time ever joining a forum/support group. I hope that by connecting with others (I have already reviewed many of your posts); I will gain some advice and additional support. First off, I want to share that I do have a wonderful fiancé that understands the best he can. However, it gets tough and I want to focus on my life with him, not having to go through the same things every day.

Here is my story. I started Cymbalta after a car accident in August 2004. I cannot recall if I started that month, but you get the idea. I am an almost 35-year old women (but, I look young so at least I have that going for me...just trying to add some humor). I have suffered from fibro since the age of 17 and migraines and chronic daily headaches since 19. After my accident, I started getting cluster headaches so my primary at the time put me on 30 mg of Cymbalta. I ended up on 60 mg and stopped taking this drug in late April or early May 2010. I did not get tapered properly, but I do not blame my doctor because she is not a primary doctor or a neurologist, but she did the best she could to help me (At the time, she was the only doctor to try and manage my pain). I have some other pain issues, but I want to try and focus on the topic.

I want to maybe have a family one day and I no longer wanted to take this drug. I had no idea how awful coming off the drug would be. I did try twice on my own (mainly because I ran out) and I started to get sick so I went back on. Finally, I said, “I still have fibro pain, headaches all the time and severe hip pain so what good does this drug do.”

My tapering process went too fast – basically three weeks – 60 mg for a week, then to 40 for a week and then to 20 and then done. I did not listen to my manual therapist who said you should taper slower because I thought, “Why should I keep taking this drug that clearly causes harm?” I tried a few other doctors and no one could really help me. One told me not to go back on the medication.

So I went back to a pain management doctor I think in July and he put me on Savella. Well, that was even worse. I took that drug for eight or nine days and the zaps, vomiting, etc... were worse. I also developed an allergic reaction.

I had times that I thought things were better, but they are not. I find myself getting rashes all the time and I react to drugs that I had no previous allergies to. I am allergic to many drugs and have tried every drug like Lyrica, etc... However, the cognitive issues caused me to stop.

Now, I zap, tingle, fall down, I cannot eat (I am thin to begin with so this is not good). Earlier last week, I thought the zapping got better. However, on Saturday night, it started again – I vomited, cried, freaked my fiancé out and like many of you, I kept thinking I am dying. I got desperate so I took 20 mg that night and then 40 mg the next day. Then, I regretted my decision as my face and lips started to hurt and tingle even more. My rash also appeared to get worse. I also have the leg pain, shocks, etc... that everyone describes. I have not taken a dose today. I hope those two times did not mess anything up even more.

I have read that Prozac may help and I called my pain doctor today. However, he does not want to do anything until next week and after I get allergy tested. I am supposed to see an allergist this week because I keep reacting and getting rashes to other treatments. I should not have been put on the last drug I tried. That triggered another rash and worse zaps because it targeted norepinephrine and I had a known allergy to its sister drug. I even failed multiple courses of a Medrol Dose pack – which usually helped me in the past. I have a message into the allergist (a new doctor for me), because I do not know if the skin sensations will skew the tests. I hope to hear back tomorrow.

I have read the posts on supplements and I just do not know anymore. Initially, a different doctor (who I stopped seeing because she did not listen or call me back), put me on the following supplements:

• Magnesium Glycinate – I take it sometimes, but my stomach already hurts so badly and I cannot eat.
• B vitamin complex – I am leery of this one. My body does not seem to always process the energy.
• D-Ribose – I can only process this when I exercise which I used to do, but I have not had the ability to do anything for 3-4 weeks. I can barely leave my apartment because of all the shaking and weird OCD-like things I now do (which I never had before).
• L-Glutamine – With this one, I have not been taking it. I get weird nervous energy and because I cannot exercise, my body rejects it. Iwill get back to that – I worked too hard for the past few years.
• I was put on Vitamin D. However, after my blood work, my levels were too high. Therefore, I do not take this now.

Here is what I added on my own (the berry greens prior to all of this):

• I am a mostly vegan so I do not take fish oil. I started taking a flaxseed version and I sometimes take Probiotic Berry Green pills. Again, I am not too consistent right now because of the severe stomach pain.
• I added some Coenzyme Q10 during this process, but I remain confused on what to take.
• I sometimes take a vegan iron supplement that my body can absorb without too much stomach pain.

I do not know if my only option is to go back on Cymbalta (I realize it may have been a bad decision to try that without a doctor for those two days), but my pain doc keeps saying, “Are you sure you do not want to go back on it?” Well, I am sure, but I understand that I may have to start again and properly get off this medication. However, I am scared to start this process all over again. I do have anti-anxiety meds and sleeping meds, but they do not help too much.

I really appreciate everyone’s advice and honesty. I know my post is on the long side, but for those of you who do not mind reading this and providing me with some insight, I would appreciate it. I do agree that a lot of doctors just do not understand what happens when we stop this drug. Therefore, I have decided that I need to open myself up to the support of others. In the long run, I know that will help me.

Thank you everyone for sharing your experiences. I look forward to all of us living a wonderful, Cymbalta-free life!

[I am who I am]

Hello there!

Just wanted to write you and let you know that I do think you are on the right path. I've been weaning for 4 months now! It's been worth it- although now that I am down to lower doses- it has been much harder and the side effects are beating me up. I'm sure that what you are going through is much harder due to your fibro. I can't imagine what that's like, but do have a close friend with fibro who has gone through some of the same things and I can understand how hard that is. I think being a vegan on top of it all must make your weaning options hard. Keep up with the supplements though- they definitely help!!!

My postings are under this title if you want to check out all my progress and ups and downs...

"Please Help : weaning on my own and need advice and encouragement"

I wish you the best of luck and hope that everything goes great for you!!!

Take care!!!!

[cookie]

Dear Hol:
You are lucky to have a wonderful fiancé. It is important that you explain that you are going through a difficult period of time and this should pass.
I read that you´ve tried many times to quit the medication. However it seems that you have always done it pretty fast. That might have contributed to maximize the withdrawal symptoms.

It is curious that you mentioned that you are reacting to things you didn´t have previous allergies to. I am very interested to know how is the –Allergy test- is it a blood test??? How long does it last???

If you can´t take supplements the best you can do is to watch your nutrition and try to supply those same vitamins and minerals through food. I also eat flaxseed to obtain omega 3. Eating vegetables is great. However you´ve got to find sources of proteins.

I am not a doctor. But if I were you, I would go back to a dosage in which you feel stable, and start weaning from there.

Hugs
Cookie

[Hol]

Dear Hol:
You are lucky to have a wonderful fiancé. It is important that you explain that you are going through a difficult period of time and this should pass.
I read that you´ve tried many times to quit the medication. However it seems that you have always done it pretty fast. That might have contributed to maximize the withdrawal symptoms.

It is curious that you mentioned that you are reacting to things you didn´t have previous allergies to. I am very interested to know how is the –Allergy test- is it a blood test??? How long does it last???

If you can´t take supplements the best you can do is to watch your nutrition and try to supply those same vitamins and minerals through food. I also eat flaxseed to obtain omega 3. Eating vegetables is great. However you´ve got to find sources of proteins.

I am not a doctor. But if I were you, I would go back to a dosage in which you feel stable, and start weaning from there.

Hugs
Cookie

[Hol]

Hi Cookie and Everyone,

Thank you for your responses thus far. It is comforting to know I am not alone.

Unfortunately, I did not have a good experience at the allergist. She said she could not help me (I guess I need a different allergist who can actually perform testing for medication allergies) and she said we would just pretend the appointment never happened. I hope this means no bill in the mail.

I am still not doing too well and I followed up with my pain doctor today. He said not to restart the Cymbalta. He is putting me on a Clonidine patch. I am scared to try it, but I cannot sleep (even on Ambien). He also said to stop other meds. Hopefully, it will help - even just my headaches since I cannot take my pain medication.

I am still searching for a doctor, but I reached out to my old primary that put me on the medication. I had to reach out to someone and I really cannot wait to have a good meal. The nurse practioner spoke to me for around 30-45 minutes (the doc is not in the office until Monday) and said the patch was a good idea to try. I told her about everything happening - the rashes, withdrawals, etc... I do not know yet if I will retake the drug. At first she said yes, but after taking, advised against it right now. I have an appointment to see my old primary on Monday. At this point, while I search, I need assistance and she put me on the drug.

Cookie - Prior to all this reoccurring (or occurring – I was better five or six weeks ago), I did do a good job with protein - soy (not too much), beans, protein supplements (rice powder, hemp powder, a raw food powder). I just cannot keep anything down. I cannot explain shocking from other things - it happened when I took Anacin (used to sometimes keep me from getting a migraine; never had issue with Aspirin before). I also shock sometimes now from Hydrocodone. I have no idea anymore what is doing what, but unfortunately, I have had around three allergic reactions since June or July. My body just needs time to heal I guess.

As a follow up, has anyone had success from going to the ER (even to help with hydration)?

Thanks again everyone for taking the time to read my lengthy posts. I do not typically like writing about myself, but I am giving this my all.

Holly

[cookie]

Dear Hol:
I recently read something about the relation between food allergies/intolerance and mental disorders. I am very interested in doing a food allergy test to try to avoid that kind of food. I do not know about medication allergies though. It is important that you find what is causing the allergies

So you have to quit ALL your meds to use the Clonidine patch??? Wow, I couldn´t stop all my medicines at the same time, rather do it one by one.

Keep me updated once you go to the appointment with old primary doctor.

Hugs
Cookie

[depresseddaze01]

I recent decided to stop taking my 90mg daily dosage of Cymbalta. My thinking was that I will be see my doctor in a few weeks and would discuss another medication to battle my depression. I personally do not feel the Cymbalta is right for me and would like to try something different. I have been on the drug for about 2 years and the past week and half have been a challenge. Maybe I should have done some research or discussed it with my doctor, but that is my fault. Now these "zaps" that I see some people have are common and the dizzyness is also a side effect. My question is how long these and other side effects generally last.

[Hol]

Dear Hol:
I recently read something about the relation between food allergies/intolerance and mental disorders. I am very interested in doing a food allergy test to try to avoid that kind of food. I do not know about medication allergies though. It is important that you find what is causing the allergies

So you have to quit ALL your meds to use the Clonidine patch??? Wow, I couldn´t stop all my medicines at the same time, rather do it one by one.

Keep me updated once you go to the appointment with old primary doctor.

Hugs
Cookie

[Hol]

Cookie,

My old primary told me to go back on. I am having a very hard time adjusting. At first, I tried to stay at 20 or 25 mg. Now, I am taking 40 mg (for the last few days). Today I woke up with more hives and rashes. I feel worse and my withdrawals are not improving.

I have restarted my other meds. I am also going back to my old neurologist toward the end of the month because no one else seems to know what to do.

For everyone, I could really use some advice on dosing. Will I feel better if I go back to my original dose of 60 mg and then start a taper? I am confused as to why the withdrawal symptoms are not improving since restarting.

[I am who I am]

Hey Hol-

Man- you have been through the ringer this summer!! What a bummer! I'm glad you have medical help (although it doesn't sound like they are giving you enough good leads). I only have about 3 days left of weaning at this point.. but just to throw my two cents in for where you are at- I don't think you need to go back to 60mgs, but I would definitely stay at 40mgs for a while... I'd say at least 2 weeks. It takes our bodies a long time to kick this stuff out and I really think that you shouldn't rush it with some of the other medical things you have going on.

Keep us posted and definitely write lots of questions.. maybe something you write here will trigger a question that you ask your doctor that leads to more answers. You sound hopeful- and I really think that is the most important thing!! Best of luck!!

[Hol]

Hey Hol-

Man- you have been through the ringer this summer!! What a bummer! I'm glad you have medical help (although it doesn't sound like they are giving you enough good leads). I only have about 3 days left of weaning at this point.. but just to throw my two cents in for where you are at- I don't think you need to go back to 60mgs, but I would definitely stay at 40mgs for a while... I'd say at least 2 weeks. It takes our bodies a long time to kick this stuff out and I really think that you shouldn't rush it with some of the other medical things you have going on.

Keep us posted and definitely write lots of questions.. maybe something you write here will trigger a question that you ask your doctor that leads to more answers. You sound hopeful- and I really think that is the most important thing!! Best of luck!!

[Hol]

Thank you for your reply.

Part of my problem is with my skin now. I cannot keep any moisture in my skin. I tried to go to my dermatologist about a month ago, but I could not leave my apartment because I was so sick. It is hard to go anywhere like this. Anyway, my skin keeps peeling and nothing helps the itching. Since going to 40 mg, my rashes, hives and white spots keep getting worse. I do have very sensitive skin, but even my fiancé is alarmed at what he saw today. Has anyone had extreme skin issues?

Normally, a doctor or pharmacist would say that the rashes and itching are allergic reactions and to stop the medication. However, withdrawals do this. I did not shock when I first came off this medication, but I did read that it could happen 4-5 months after stopping Cymbalta. That is what happened to me. Is it possible that my body is rejecting the Cymbalta? I am having a challenging time reconciling staying on this med. I started it at least three weeks ago and I feel worse. I cannot get any additional relief from my primary or any of the other doctors (five I think) I went to since May.

[Hol]

Linda,

I forgive the post, but I must say that I do not understand why you would post that.

We are not complaining. We are all suffering and we have come to this forum for advice and suggestions. In my case, I have tried everything else. We are sharing our stories in the hopes that we can learn from each other to ease the pain.

I held out as long as I could, but I had to try something. Unfortunately, my body is not healing and it will not stay hydrated. Therefore, I wanted to see if anyone else had this happen.

I wish you the best of luck and I hope you have a successful taper.

[crashed]

this is sooo hard. we r all so desperate to find relief from pain or depression we just open our hand and trust the dr to provide relief from the med he drops in it.......until... we decide it is no longer good for us. i continue to be off Cymbalta having weaned down to 15 and then off 10-31. i saw neurologist and showed her my list of side effects from withdrawal. she said " you will have side effects but after 3 weeks it will be out of your system" she wants me to start Paxil 20 mg for 2 weeks then increase to 40 daily. i do not want to start this med especially while still having the side effects from cymbalta. i am a medical professional and it is very clear to me that they meaning neuro, pain management and f.p.mds are not familiar with our dilemmas. we need to be our own advocates!!!!!!! so i am taking the supplements and tramadol in the am. walking or bike riding helps with the brain zaps i get which r worse in the am for me for some reason. i use soma at night for sleep because of my back but tomorrow i will start with a CPAP machine for sleep apnea so it may be better or may be worse. i do not experience any GI problems, rage,or emotional extremes. thanks everyone for being here; i am new to this sight and fine your comments and experiences very helpful.

[Hol]

I thought I would post an update.

Unfortunately, the Prozac option is not working for me yet. When I started it (this Monday), I went down to 20 mg of the Cymbalta. The 10 mg of Prozac did not help so I went up to 20 mg (for two days now). I think I feel worse from the Cymbalta drop, but as I mentioned, my rashes, burning, tingling, etc… keep getting worse. Therefore, an increase again, may not be possible for me. I also get numbness and pain (at the same time) on the left side of my face. For me, restarting the Cymbalta did not alleviate any of my symptoms.

I know we are all different. I asked for advice on some of the other threads and I hoped to get responses, but I am still waiting.

I know it is hard to get on the computer (especially with the shocks).

[cookie]

I thought I would post an update.

Unfortunately, the Prozac option is not working for me yet. When I started it (this Monday), I went down to 20 mg of the Cymbalta. The 10 mg of Prozac did not help so I went up to 20 mg (for two days now). I think I feel worse from the Cymbalta drop, but as I mentioned, my rashes, burning, tingling, etc… keep getting worse. Therefore, an increase again, may not be possible for me. I also get numbness and pain (at the same time) on the left side of my face. For me, restarting the Cymbalta did not alleviate any of my symptoms.

I know we are all different. I asked for advice on some of the other threads and I hoped to get responses, but I am still waiting.

I know it is hard to get on the computer (especially with the shocks).

Dear d Hol:
Today I started itching badly on my forehead. I had not experienced that before. This was in the afternoon but then at night I developed a rash/redness on face. Right now I am very itchy. What do you recomend? Is there any danger if I do not take any pills for the rash???